| thyroiditis | : a personal story of graves' disease

Questions & Answers

I made this page because I started receiving a good deal of questions via e-mail, but I decided to share them with other visitors as it makes the site more comprehensive. If you want my opinion on an article of sorts, please cite your source (like a URL) or the actual journal itself. I can't guess what you're referring to specifically. Thanks.

Also, if you're looking specifically for Q&A on surgery questions, please visit the surgery page.

autumn: Hi, just came across this site, very inetereting. i am 28 and was diagnosed with Graves 3 years ago, had radiation iodine treatment. Haven't been normal since. I switched to hypo, and since then my numbers have flipped flopped all over the place. i have only had a normal tsh 3 times in 3 years. I have also suffered from a lung condtion called brobchiolitis obliterans since i was 14. that requierd home oxygen for 3 years. i also have fibromyalgia. my doctor seems to think all my flip flopping tsh numnbers are simply due to not having the right dose of synthroid. i was wondering if it couldn't possibly be because my body has to work overtime for the other contiditons that i have. I have also read that even though your thyroid is radtiated that Graves Diseaes stays in your system and you can have episodes throughout your life. Is that true? i have also tried armour thyroid, that only made my tsh jump to 110.1. it did nothing for me. my last tsh showed a normal reading or 0.94, but i go between feeling chilled, and shaky, to hot and exhausted. any of this sound like it could still be my thyroid? t4 and t3 were o.k. this last time to, although the time before that, or 3 months ago i was hyper again. any suggestions?
date: 6:18 pm - Friday, 26 August 2005

Hiya Autumn,

Glad you found the site worthy of a visit :)

Your idea about your other health conditions are quite valid, and I would suggest seeing someone for a second opinion. It's probably some messy work trying to understand where other conditions overlap with thyroid disorders, but I'm sure an empathetic specialist would be able to help you out with that.

Graves' Disease is an auto-immune disorder, and yes, even when hyperthyroidism is treated, you will still have Graves' Disease; it will only be in remission. Auto-immune disorders are rather complex to explain, but basically, it's when your immune system confuses healthy cells for the unhealthy ones, and deploys your own defense systems on yourself. There's a lot of good information about this in my links as well as on about.com, if you look under Graves' there, you'll receive a plethora of info.

I'm sorry to read that you're experiencing a lot of uncomfortable side-effects. I think we've all been there at some point when trying to find a euthyroid state, so I can understand your frustration. Definitely look into seeing an endocrinologist that can give you a second opinion about your medication if you've already addressed your concerns your other health conditions with your current doctor (I assume from your post that you have and she/he was not very responsive?). Sorry I can't be more specific in answering your questions, I don't know much about Fibromyalgia to say whether your symptoms sound like they're thyroid-related or not, but they sound like thyroid symptoms to me. I hope you find some answers in finding a second opinion though.

Best,

Jaclyn: did you gain weight after surgery?
date: 8:07 pm - Tuesday, 12 July 2005

Hiya Jaclyn,

I didn't gain weight right away, but I did because I eventually went the other way with my thyroid results, into a hypothyroid state, and the common side-effet of hypothyroidism is weight gain.

All is not lost, though. Exercising reglarly and eating a healthy diet does make a huge impact, if you stick to it. I've written quite a bit about exercise and diet when replying to Jennifer's entry, so have a look there for more information.

Just remember that if you do gain weight, it isn't a life sentence. If you're patient with yourself and stick to a realistic regime, the weight will come off, and I'm not talking about eating nothing and exercising like mad ;) It takes time, I won't lie. But the results will be there in the end.

Best,

marci helms: i have been tested for allot of neuological diseases-i'm very confused with allot of bad test results without and definate diagnosis- can you please tell me what anti thyroglobn <0.3 and tpo auto ab <1.5 mean? both test results are below normal-i hope this is not a stupid question-but i have not had any luck with doctors for the past five years-thank-you
date: 7:13 pm - Sunday, 10 July 2005

Hiya Marci,

I'm sorry to read that you've been struggling to find some answers with your doctor.

Antithyroglobulin antibody test is to help identify wether or not you have an auto-immune disorder with your thyroiditis. A negative reading means that there are no antibodies, and therefore a normal reading. Here's a link with more info about that: http://www.nlm.nih.gov/medlineplus/ency/article/003557.htm

From what I gather, high levels of Anti-TPO Ab should be found with individuals with untreated Graves' Disease. I can't seem to find much information about this one though, but I would think that the same with the antithyroglobulin, if it's negative, then the level is normal. This is something you'll have to ask your doctor about I'm afraid, sorry.

I would, however, try to find another doctor though that you feel confident in working with. There is nothing more frustrating, and I can empathise because I've had to deal with doctors who didn't want my input at all. I know this can be rather complicated, but I hope you do find someone you're more comfortable with who will take the time to discuss what tests are being done and the implications of their results.

Best,

Jennifer: Hi. I am 23 and at the age of 19 my thyroind developed a nodule and the doctors had to remove it B/c of Papillary carcinome. Since the surgery i have been taking synthroid. However, i am struggling with my weight and moodyness. I am normally a very thin person but i have gained about 20 pounds in the last year.Is there any thing special that i should be doing to help my body out? Like a special diet or exercise regimen?
date: 10:07 pm - Wednesday, 30 March 2005

Hiya Jennifer,

I can empathise with the weight-gain, it is a common side-effect of hypothyroidism. Is your medication being regulated regularly on around a 3 month basis? Regular blood tests? Hopefully you'll want to keep following up to find the right adjustment of thyroxine (Synthroid in your case) to help you feel more like yourself again.

Whilst you're working on your medication, you should try to eat as healthy a diet as possible, including lots of fruit and vegetables and exercise regularly. Exercise should include cardio-vascular training (treadmills, exercise bike, cross-trainer, rowing machine, step machine, swimming, running/jogging, etc.) and when you're feeling up to it, see if you can have an appointment with a fitness instructor at your local leisure centre/gym. They can help you find a programme that will suit you best and take your health condition(s) into account.

There is no special diet to stick to, but I understand that soya and soya products and vegetables of the Cruciferae group (swede/rutebega, broccoli, cauliflower, brussel sprouts, cabbage) can inhibit your body from uptake of your thyroxine suppliment. It doesn't mean you shouldn't eat any food containing these food items, but you should just make sure you don't go over the top and eat too much of them, or they can have an effect on your thyroid levels. On the contrary, Cruciferae are part of the cancer-fighting veggies, so you shouldn't stop eating them altogether. Soya can be a problem if you're vegetarian or vegan, but there are more and more alternatives out there, which i'm sure you'll find in a health food shop if this is a big concern for you.

Best,

paula: Just found your site, WOW, very pleased I found this site.
date: 9:09 am - Saturday, 26 March 2005

Hiya Paula,

Thanks! Glad you found it interesting and informative :)

Best,

Tammy Thompson: I am 40 years old. In Oct. I was having chest and back pains. I was told that I had an ulcer. At that time an ultra sound was performed and a 2.5 by 1.6 nodule was found on my thyroid gland. My husband is in the military and we are stationed in Germany. The American doctors sent me to a German specalist. On my first visit he took blood samples and performed another ultra sound, on my second visit he sent me to have a thyroid scan then performed an FNA. I was told that the results would take 10 to 12 days. On the third appointment, which last maybe 10 minutes, we were told that the results were inconclusive. We were told that the needle had jammed due to skin and that the nodule was hard and that due to this the test was also deemed inconclusive. The doctor now wants me to come back in June, which is five months away, to see if the nodule have grown in size. My husband and I asked a lot of questions, but did not receive answers. At this point the only thing we were told is that the other test were normal and the FNA was inconclusive. Also the series of blood work conducted was not the same as what I've researched. My blood work only consisted of having the potassium, sodium, glucose, reactive protein, T3, T4, and TSH tested. Most of the sites I visited mentioned more test than this being conducted. My question is whether or not I should leave everything as it is or request another doctor? I know that thyroid cancer is rare and slow. Am I being overly concerned about this?
date: 1:42 am - Wednesday, 2 February 2005

Hiya Tammy,

Just to warn you, if you are looking at thyroid function ranges and comparing them between the US and Germany, the scales might be different. It seems every country has a different range for normal in TSH, T3 and T4, so just beware of this when you're looking around the internet on different sites -- atleast I know there's a difference between the US and the UK scales. This may be the answer to your question regarding the tests that have been conduction on your thyroid function, but the most important ones seem to be there, so I wouldn't be too overly concerned with that matter.

Secondly, my FNA results were inconclusive, too. My nodules were too small to obtain enough fluid from them to run any tests. Did your doctor tell you whether they were hot or cold nodules? Hot nodules are active ones, cold are inactive. That might give you more of a clue as to whether to be concerned about the situation or not. In any case, if you are concerned, I would get a second opinion. You are entitled to this, it is your health, and if you're concerned or just want to see if someone has a different opinion, it's okay. Five months is a long time to wait, I would imagine I would be getting antsy with that long of a pause between my next appointment and such.

Best of luck to you, and hope you find some resolution soon.

Lorraine: Hi there. Thanks for putting all this info on your site. At times, it is hard to find thurough personal stories about Grave's. I was just diagnosed, and am now on tapazole and beta blockers. I have heard mixed things on whether the anti-thyroid medication will shrink my goiter at all, or just cause it to remain the same size. My endo seems to think it will shrink. But in the 1 and 1/2 months since I've been medicated, it appears that the goiter has actually grown. Perhaps it is my perception? I was wondering, do you know why your goiter grew after you were being medicated? Was this the result of the nodules? Therefore, did the thyroid grow diffusely or lopsided? Thank you in advance for your reply. -Lorraine
date: 11:30 pm - Friday, 28 January 2005

Hiya Lorraine,

I was on Tapazole for a good several months, and yes, my goiter continued to grow to the size of three-times larger than a normal healthy thyroid gland. I knew this because the ultrasound technician noticed and because my favourite necklace didn't fit around my neck any longer. To my knowledge, my nodules did not grow, which makes sense as they were cold nodules, or inactive nodules, but my goiter was becoming worse, that was certain; it was a diffuse growth, by the way.

Tapazole and beta-blockers do not always shrink goiters, that I can tell you from personal experience. They always try them first though as there's a chance that they might work for you (they work for some, as you might notice by reading others' posts here). RIA and surgery are long-term solutions, but they are rather invasive and costly, so they are unlikely to skip right to the punch with these options when you are first diagnosed with Graves'. Give them a chance, but continue to write down your concerns and address them when you see your doctor, it's important to communicate your perspective and let them know what you're experiencing.

Best,

Irene Warren: Hello.. After a trip to the emergency room for rapid heart beat and three days in the hospital (6 six years ago) I was diagnosed with Graves. The thyroid gland was very large and due to my heart issue radioactive Iodine cound not be used...so surgery was the only option. Therefore in order to "shrink" the thyroid, I was put on Tapozol for 9 months. Surgery was done, leaving only a tiny, tiny part of the thyroid to hold the para-thyroid glands. Anyway, that was 5 1/2 years ago. Since that time I have struggled with thyroid levels. I have a great physician who is a specialist who has been working with me closely. My problem has been the small part of the thyroid that is left is still producing such a large amount of hormone that my hyperism has kiced back in and I keep crashing. We have tried all sorts of treatment...tapozol only..to lower hormone levels...when I crash, then we add thyroid replacement which increases me back into hyperism. What a ride I have had. For the past two years we have treated me with both tapozol and thyroid replacement drugs just to keep me regulated. You can imagine that I have blood work every three months and that sure gets tiring. This treatment has been working and I have stayed balanced. However, I am very tired of taking Tapazol and the possible damage it can do to my liver. Therefore, since September, I have been off tapozol and am only using Thyroxin. My recent bloodwork has indicated that my thyroid is still overproducing, therefore, we will be once again trying to find a level of replacement drug that will not cause the hyperism or cause me to totally crash. It has been quite a journey for me. I am hopeful that sometime I will be regulated. I do find that eating right and daily exercise is helpful to me. Hopefully, if anyone else out there is having these issues..this can be of encouragement to them. Irene - Yellow Springs, OH
date: 9:58 am - Thursday, 13 January 2005

Hi Irene,

I'm sorry that you've had such a struggle to endure with finding balance with your thyroid levels. This same issue was a concern for my surgeon, that if I had the surgery that I must have as much removed as possible without causing damage to the parathyroid glands and leaving me enough to possibly ensure I wouldn't be completely without a thyroid gland. Unfortunately, my parathyroid glands have never really righted themselves, so I'm taking Rolcaltrol daily to help with my calcium phosphate levels.

As irritating as it may be, have you or your doctor considered having another surgery to remove the rest of your thyroid gland so you can just take thyroxine alone and not have to bother about this business of taking both beta-blockers and thyroxine in hopes that it will work? Surely only having one issue, hypothyroidism, is easier to treat than both at the same time? I realise that it's not an easy decision and that the parathyroids will be at risk again, but life can't be any easier for you now that you have to worry about swinging to either end of the scale, and the surgery should have helped make things easier for you.

Couldn't agree more with the exercise and healthy diet, I need to update this site as I've been exercising regularly now to try to manage what hypothyroidism has done to my metabolism. I hope you can have a frank discussion with your doctor about finding a better solution for you, no wonder you're frustrated :/

Best,

ANNE: I WOULD LIKE TO GET SOME INFO. I HAD MY THYROID REMOVED 5 YEARS AGO AND HAVE HAD NOTHING BUT TROUBLE SINCE. I AM ON SYNTHROID NOW AND HAVE BEEN HAVING SIDE EFFECTS BECAUSE OF IT. I AM ALSO TRYING TO HELP SOMEONE I KNOW IN EDUCATING HER MOM ON TAPAZOLE AND OTHER MEDS WHEN TAPAZOLE GIVES HER SIDE EFFECTS. IT HAS BEEN YEARS SINCE I WAS ON TAPAZOLE AND NOT SURE WHAT MEDS ARE OUT THERE OTHER THAN TAPAZOLE. PLEASE ADVISE. IN YOUR SUBJECT AREA PLEASE WRITE THAT THIS IS IN REPLY TO MY QUESTION. ALSO HAS ANYONE ELSE HAD LONG TERM TROUBLE WITH BEING ON SYNTHROID. I HAVE BEEN HAVING PANIC ATTACKS SINCE I'VE BEEN ON THIS, WHERE BEFORE I'D NEVER HAD ONE. THANKS
date: 6:03 pm - Friday, 7 January 2005

Hiya Anne,

I would ask your doctor about other substitutes for Tapazole. I am aware that there are several on the market, but I'm not a specialist and I don't know your friend so I can't advise you as to what might be a good alternative. I'm sorry.

However, panicky feelings, heart-racing, etc. sound like symptoms of hyperthyroidism, so I would go have a thyroid function test for yourself to see if you are taking too much Synthroid. Taking too much thyroxine suppliment can send people into hyperthyroid states, just as if your gland was producing too much naturally. Definitely have it looked at ASAP. I haven't heard of this as a common side-effect to Synthroid, but like I said, sounds like an effect of taking too much Synthroid.

Hope you see someone soon regarding this issue, and best of luck to you and your friend.

Joan: I have been on tapazole for 7 years and in the past year I have been only taking 5 mg a day. the most that I have ever taken would have been 15 mg and that was for a short time maybe 6 months. My question is what would be the long term effects of continuing on this dosage permanently since I feel great and would like to continue taking the medication insteat of rai.
date: 3:15 pm - Monday, 8 November 2004

Hiya Joan,

Some people can manage their hyperthyroidism with medication, like Tapazole. Lucky you! ;)

Medicinenet.com sites these side effects:

Methimazole is generally well-tolerated with side effects occurring in 3 out of every 100 patients. The most common side effects are related to the skin and include rash, itching, hives, abnormal hair loss, and skin pigmentation. Other common side effects are swelling, nausea, vomiting, heartburn, loss of taste, joint or muscle aches, numbness and headache.

Less common but serious side effects have occurred with methimazole therapy. A decrease of white blood cells in the blood (agranulocytosis) may occur. Symptoms and signs of agranulocytosis include infectious lesions of the throat, the gastrointestinal tract and skin with an overall feeling of illness and fever. A decrease in blood platelets (thrombocytopenia) also may occur. Since platelets are important for the clotting of blood, thrombocytopenia may lead to problems with excessive bleeding.

There also have been rare occurrences with methimazole of hepatitis and death of liver cells (hepatic necrosis). Failure of the liver due to hepatic necrosis may lead to severe brain swelling, gastrointestinal bleeding, and death.
http://www.medicinenet.com/methimazole/article.htm

However, Rxmed.com suggests that long-term use of Tapazole may cause the thyroiditis to go into remission -- which is great! Here's the link (abbrv. as it's huge): http://www.rxmed.com/

From what I understand, it sounds like you can have any of the side-effects during your treatment/use of Tapazole, whether short-term or long-term. I stand corrected!

Any further questions you have, I would say you should ask your endocrinologist as they specialise with beta-blockers.

Best,

Janice Alpough: Hello all, I previously posted on October 6, 2004 that I was having surgery on November 1, 2004. Well I just had the surgery and everything went fine. I was very afraid for my self and for my husband but nothing eventful happened and no complications with the surgery for which I am very grateful. I arrived at the hospital at 6:45am to prep for my surgery which was to begin at 7:30am. I was instructed to take off everything and put on the hospital gown. After that I was hooked up to an IV and spoke with the anesthesiologist and found out that he had 20+ years of experience. I had not been able to speak with him prior to now. After the prep my husband was called in for a kiss goodbye and I told him I would see him a couple of hours but they told my husband the surgery would take about 3 hours. I was then told they were going to 'put me out' and I remember them putting the oxygen mask over my face and don't remember anything else. I woke up it seemed like short time later but I knew the surgery was over. (Actually the surgery only took 2 hours) I checked to see if I could move my limbs and if I could hum I knew I still had a voice. I was very sleepy and finally was taken to my room and my family was called in to see me. They all said I looked good and I gave them the thumbs up that I was okay and I was just so happy the surgery was over with. I had a drain in the front of my neck in the stitches but it was not painful, probably because I was on pain medication. The nurse had given me some morphine but evidently it was making me nauseated. After they had given me two shots of it, they did not give me any more because every time I threw up my blood pressure and heart rate would rise. The Nurse started giving me oral pain meds and finally I was able to keep it down and the terrible headache I had (probably from the anesthesia) went away. Then I could tell that I really felt better as most of the hyperthyroid symptoms were relieved. Except my pulse was faster now than before I had the surgery so this worried me. When I mentioned it to the nurse she didn't seem concerned. This is a teaching hospital so there was a small parade of Drs.all day and part of the night. Finally the next day, another Dr., anassociate of my endo, came by to see how I was doing. I mentioned my fast heartrate to him and he said it was probably due to my body adjusting to the trauma of the surgery. He also said I should continue to take the Propranolol (a beta blocker) as needed for a few days to stop the tachycardia. He then said to wait 3-4 days to take the Levothyroxine prescribed. So to make a much longer story shorter, I am amazed at how good I feel after the surgery and how relieved I am of the hyper symptoms, including the tachycardia, the profuse sweating and shaking and always thinking I'm near death or heart attack. I haven't started the replacment thyroid yet but was prescribed 0.075 MG of Levothyroxine. I will take my first dose tomorrow and see how I feel. Also I have an appt to see my endo Dr. in two weeks and an appt to see my surgeon for follow-up in 10 days. For two days I have gone up the steps to our upstairs and have not even been winded. I could never do this before the surgery. I am cautiously optimistic.
date: 5:10 pm - Thursday,4 November 2004

Hello, Just wanted to give you an update. It has now been 8 months since my total thyroidectomy. I continue to feel 100% better than I did before the surgery. I have had my replacement thryoid medication (levothyroxine) increased one time very slightly from 0.137 to 0.150 MG about two months ago. I started to feel a little sluggish and decided to go in for bloodwork and this is when my dr. adjusted my medication. Overall, I am very happy with the results of my surgery. I have my life back, my husband is no longer worried about me dying every day, and the scar is minimal, which was the least of my worries anyway. I did gain about 15 pounds but I'm not worried about that because I feel so much better. I do not feel 100% normal but I do feel 100% better than I did before. This whole ordeal has made me appreciate life so much more than I did before and I approach everything I do now in a more balanced way. I truly feel that I was very close to death and I feel blessed to be still here. The only advice I have is if you are considering surgery for thyroid removal due to Grave's Disease is 1) Read and learn as much as you can about it, 2) find an endocrinologist who is open minded and listens to you. It took me over three years to find the right endo - one who believed in me and supported my decision gave me the confidence to go through with the surgery 3) find the absolute best surgeon you can, one who specializes in this type of surgery. This will lower the risk of damage to your vocal chords and parathyroid glands. Good luck and God bless to all.
date: 1:51 pm - Monday, 4 July 2005

Janice,

I am extremely pleased for you that everything went well and that your hyperthyroid symptoms are gone. Surgery is a huge shock to the body, but with rest and understanding that it takes a while for your body to adjust, recovery should be sorted :)

Well done!

I also completely agree with your 3 points you've made in the later entry. I had to 'shop around' until someone understood that I wanted to be part of the decision-making process in my treatment. It's so important, not just for the physical treatment, but psychologically for feeling comfortable with a decision that will make an impact on the rest of one's life.

Thanks again for your updates -- my apologies for not getting back to you for so long; it was nice to have the 'before and after' picture of your progress though. All the best to you,

Bobbi: I was diagnosed 1/2003 and still feel awful. I am on tapazol and went hypo, so slowly cut back to nothing and then went hyper. I am back on tapazol, trying not to go hypo and still fee awful. Awful, meaning exhausted, eyes are irrated (dry). When I went hypo I gained weight, fAST! Now I am maintaining. I use to walk, aerobics and then BAM! No energy and my heart beat so fast, I coudlnt' breath. My breathing is labored when i walk up the stairs to bed. My heart beats fast in the middle of the night. My husband says my breathing is heavy at night. I am sleeping though! I met a woman at work, my age (51) that was diagnosed about 3 years ago and did not want radiation. The meds were affecting her liver, so the doctor said..."go off" and see what happens. WEll!!! she went into remission! I am lost and feeling as though if I stay where I am at, I will have no energy, will not be able to work at a new job because I can't concentrate...and my heart will beat so fast, I will die prematurely. Any thoughts?
date: 9:03 pm - Saturday, 30 October 2004

Hi Bobbi,

Are you being treated for Graves' or just hyperthyroidism? Understanding which diagnosis you have will probably shed some light to your situation. They are similar in some ways, but since Graves' is an auto-immune disorder, you'll need to take more care. I would suspect that by now you've given Tapazole long enough of a go in order to make the next step towards more permanent treatment.

I'm really sorry to hear you're in such a state, and I can sympathise.

If you don't want to undergo RIA, and I can completely understand if that's the case, I would suggest you make an appointment with your endocrinologist with a view to discussing surgery and setting up a referral to an ENT surgeon. I would suggest writing down everything you want to discuss and why you feel surgery is a better option for you, just so you don't forget anything you wish to bring up.

Before you have your appointment, try to do as much research on surgery as you can. The more you learn about your options, the more confident you will feel that you are making the right decisions for your health, and statistics prove you have a better recovery for this as well. Keep in touch if you need any extra support, I know I've got to update my links section, but there are a few there that are absolutely priceless.

Best,

Veronika: Hello, I am a 55 year old woman. I was diagnosed with Graves a week ago. I found this website very helpful. I don't know much about this disease. I don't have any symptoms at all. My doctor prescribed me a tapazole. Can anybody answer what they think about it. I am not sure what to do to start taking it (for good?) or pass. This year I changed my lifestyle and started swimming in the pool twice a day. Lately I read about an Olympic swimmer who was diagnosed with Graves. May high level of chlorine in the pool cause an abnormal thyroid function? Thank you, I would really appreciate a reply.
date: 10:18 am - Monday, 11 October 2004

Hiya Veronkia,

Thank you for the positive remarks; it's what I've hoped this website would do!

Tapazole is a beta-blocker that is meant to decrease the amount of thyroid hormones you are currently overproducing due to Graves'. It is the first step in treatment with a form of hyperthyroidism, but it is often not a good long-term solution. I discuss all the options available on this part of the site: https://thyroiditis.tripod.com/hyper.html.

As to your other half of your post, I have never heard of any scientific studies that correlate chlorine as an attributing factor in Graves' disease. Graves' is an auto-immune disorder, meaning that your own immune system is attacking your body; it is usually a genetic inheritance from a parent or relative who also has an auto-immune disorder, usually on the maternal side, as I understand it. If anything, swimming is an excellent thing to do; please don't quit due to fears of chlorine.

PS: thanks for waiting for the reply, been a busy month for me(!)

Best,

Janice Alpough: Hello, I'm a 47 year old female. I am scheduled for thyroidectomy Nov. 1, 2004. I feel good about my decision and finally found a dr. who agreed RAI was not for me due to my eye problems. I have had 2 endocrinologists opinions and they both agree surgery is the best option. I live in the US and yes Dr.s usually do recommend RAI as first choice. I just kept searching for a doctor I believed. I am very skeptical about Drs so I couldn't believe I actually found two who agreed with me. I also could not tolerate the medications, the natural remedies didn't work and I am just sick and tired or being sick and tired and I'm really hoping I will eventually feel better after surgery but I know it will take time. I will write again after my surgery to let everyone know how it went.
date: 1:38 am - Wednesday,October 6, 2004

Hiya Janice,

Excellent, good luck with your surgery next month :)

Just remember to bring/have someone bring you some cough drops to soothe your throat after intubation. People generally do better (in any surgery) when they know as much as possible beforehand and feel they've made an informed choice.

I'm sure you'll be fine with a positive attitude and good repore with your endocrinologist and ENT surgeon. Thanks for telling us about your progress and i'll be looking forward to your updates afterwards.

Happy healing ;)

heather: hi, i'm wondering if you had any other symptoms prior to diagnosis, other than the ones you described? in particular, did you notice a goiter, or is that something that came on later in the process? thanks so much.
date: 6:49 am - Monday, 27 September, 2004

Hi Heather,

It looks like I managed to forget to mention my goitre in my hyperthyroid section -- thank you for inadvertantly pointing this out.

My thyroid was nearly three times the size of a normal gland, and I had several ultra sounds to confirm the nodules that were found in the thyroid uptake scan. Goitres are part of the signs/symptoms for a diagnosis for Graves'.

Best,

Gabrielle: Hi, I just found your site & wish I could have found something this informative when I was first dx with Grave's. It sure would've helped me make a wiser treatment plan. I assume that you are from the UK. I'm from the US and my MD wouldn't even consider surgery. He said it was to risky & hardly any surgeons would be willing to perform it because of hemorrhaging, damage to the parathyroids. I was dx'd on Christmas Eve 97. As you know, when you are so hyper it's hard to make good informed decisions. I wanted the Sx because I did want to preserve some gland function but I also wanted to get better fast. I had just started a new job , had an 8mo & 3yr old. I mistakenly had 2 RAIs & became & within 1 mo gained 30lbs. I had a host of other problems associated with hyper then developed new ones due to being hypo. I still don't feel "right" even though my MD says my labs are "normal". I have also been on insulin for 33yrs & take 4-5 injections a day. I tell people that I was a healthy normal person with Diabetes living a life when something totally unexpected hit me over the head & knocked me out. I am trying to except but I can't that I will never feel or look the same again. I can't even work anymore. I do take Synthroid & Cytomel (levothyroxin & T3) I heard that Armour thyroid replacement was better & I thought about giving that a try. Have you ever heard of this? I do everything I'm suspose to but I just can't get better. I tell people if I had to choose, I'd take Diabetes anyday. Grave's has totally destroyed my life.THANKS for sharing your own journay with us. Your website & the info you share is a blessing.
date: 7:08 pm - Monday, 30 August, 2004

Hi there Gabrielle,

Many thanks for the supportive comments about the site.

I was treated in the US for my hyperthyroidism/Graves', but my post-surgery/hypothyroidism has been treated in the UK.

I know the frustration of working with an MD who won't consider surgery. My first endocrinologist in the US did not want to send me off to a surgeon, claiming that over 99% of patients with hyperthyroidism have RIA as treatment and that it would all be quick and easy. He even claimed to have 'lost' my letter to my surgeon, trying to delay or even stop me from my surgery(!) I just persisted by finding another endocrinologist on my HMO to see for a second opinion; she was extremely helpful and listened to my concerns about why I felt surgery was a better option for me. Obviously there are risks to be had, as there is with any surgery, but I still feel it was the best choice for me. I did not like the authoritative manner that my feelings were dismissed with from my previous endocrinologist, and I hear about people with doctors like these quite frequently. We, however, do have the choice to work with our doctors, and it just takes some informative decision-making to make this possible.

I am sorry to hear about your situation. It must have been a really difficult time for you.

I have heard of Armour, as there are many American members of the thyroid group on Livejournal, click here to visit or find it on the links page. I understand that it's manufacturers are halting production?

(For other readers) Basically, Armour is T3 hormone replacement, one of the hormones that the thyroid gland normally produces. I take replacement by the generic version, known at liothyronine, and I feel it's made a dramatic difference in how I've actually felt. I've managed to lose weight again since my thyroidectomy, and more importantly, I'm feeling more like my former self again. I'm sure there is an equivalent version of liothyronine in the US (other than Armour and Cytomel), have a word with your endocrinologist about this. It may not work for everyone, but it's something that was never mentioned to me when in the US, it's always been Synthroid, Synthroid, Synthroid.

Hope this has been some help to you, and feel free to keep in touch if I can help you in any way. Thank you again for your positive remarks, it's greatly appreciated :)

Best,

Lisa Strickland: Hi, I have just had surgery a couple of weeks ago and in researching i found your web site. My doctor did a thyroidectomy and neck dissection but left a very small piece of my right thyroid to hopefully produce enough hormone to not take medicine and so far my levels are still normal but i do not feel well at all. I have talked to my doctors about this and this is what prompted the blood test but because they came back at normal levels she does not seem concerned but i feel horrible. I can't sleep without having awful nightmares and i am always tired no matter how long i sleep. I cry at the drop of a hat for no reason. I have extreme feelings of loneliness and depression. I know that they are going on blood tests and what looks normal to them but i have felt bad for years and now feeling bad is worse. I am scared that i will continue to come up normal but feel like this. How do i solve this or is this normal? I am finding it very hard to function. My children have brought things to my attention....i have a very low tolerance for noises such as fans running or the whine of a computer....things that did not bother me before....i feel like i sound insane but desperately need answers. Can you tell me if any of this is normal? Your sight is very informative so i am hoping maybe someone will know what is going on and at least put me at ease that i am not actually going crazy....haha. Thank you so much for taking the time to help others. Its nice to know people like you so exist. Have a beautiful day, Lisa
date: 6:41 pm - Tuesday, 10 August, 2004

Hullo Lisa,

Glad to hear that your surgery itself has gone well. I had a subtotal thyroidectomy instead of a total because I was hoping that what was left behind would produce enough thyroxine in order to keep me in a euthyroid state as well. Unfortunately, it didn't work out that way, but my ENT surgeon warned me that the leftover tissue might just die off on its own and the likelihood of having just the right amount to produce euthyroid status is very slim.

Although surgery seems like a very distinct and immediate action that should have immediate results with your bloodwork, it often doesn't. It might take months for your bloodwork to show any changes (if any), and as I've learnt myself, your bloodwork isn't the be all and end all of how your thyroid problems should be managed. If you feel horrible, can't sleep, feel sluggish and depressed, than this information should not be discounted. My bloodwork was 'in range' after a year of post surgery adjustments with medication, but I still felt like I was running at 40%. The problem with the ranges for the thyroid function test is that they generally only measure them when things go wrong(!); therefore, the endocrinologists never know what number on the range we normally would 'run' on before problems with the thyroid gland. Luckily my doctor has been very understanding and guessed that because I still didn't feel right that I must have run on the 'high end' of the scale and adjusted my medication accordingly.

Lisa, do you think you can possibly wait until about one month post surgery and see what your bloodwork results say? Usually by then the endocrinologist has a good idea of your outcome post surgery. In the meantime, I would look for another endocrinologist to see when your month's time is up, just to have a second opinion when the time has come. It certainly sounds like you are experiencing symptoms of hypothyroidism, but I'm not a healthcare professional so I can't give you any more advice than what I've suggested above. I know another two weeks sounds like an eternity, especially when you're not feeling well, I can empathise with that as I've been there (a few times). Another suggestion is to keep a diary of what you're feeling. Write down what you're experiencing and especially other people's observations (like your children), so you don't forget to mention all of this in one months time post surgery to both your current doctor and the one you're going to see for a second opinion.

I know this sounds cliché, but hang in there. At least you've sorted out one side of the problem (hyperthyroidism), so think of it as halfway to sorting this mess out, yes? Thyroid disorders seem to be excellent at testing people's patience ;)

And thank you kindly for the compliments, it's good to know that someone has run across this website and found the information helpful on any degree.

Best,

CJ: Hi, Just found your site and whilst it seems to be a fascinating view of the condition and it's treatment in the US (I'm just assuming), as a European who was diagnosed with Graves Disease two months ago I am wondering about the different choices offered and taken. In your story you say that you were offered medication to bring the condition under control. I'm wondering why you went for surgery instead of trying this option? From what I've read it seems to be very common in the US to go for the more permanent methods of "cure" whereas in Europe we seem to be given medication. I had assumed that this was a choice of the doctor, but now I'm wondering if this is a choice of the patient. Myself, I'm taking Carbimazole, soon to be paired with Thyroxine and may have to have surgery in a year to 18 months time, but only if I don't react well to the medication. Frankly I have already started to panic about the prospect of surgery but this site has been fantastic in giving much searched for information. Thankyou.
date: 6:00 am - Sunday, 8 August, 2004

Hiya CJ, Yes, I was treated pre-surgery to surgery in the US, although my post-surgery and current treatment has been carried out in Europe (UK). Indeed, I was offered medication to see if it would bring my thyroid levels under control as a first option, and it is the option that I took -- which you can read about on this site here, https://thyroiditis.tripod.com/hyper.html or you can just click above on the menu under 'hyperthyroid', where I discussed the 3 options that are available for treating hyperthyroidism and my experience with Tapazole:

I was put on Tapazole (methimazole), a medication used to block thyroid hormones (thyroxine), seeing as I would need to stablise my thyroid levels before choosing either of the two more permanent options. I felt better that the testing was over and that something to relieve my condition was finally being done.

If you read the page I've linked, you'll see that although medication temporarily relieved my symptoms, I suffered from the side-effects of Tapazole and unfortunately, my hyperthyroidism was unable to be controlled through the use of medication. I therefore had the other two options for hope of remission/euthyroid status. I actually read many European sites to learn more about RIA (Radio-active Iodine Ablation) and why it is so heavily criticised outside of the US; hence why I changed my mind and decided my mother (an RN) was probably right to be wary of RIA, although my first endocrinologist was very persistent in promoting it as the next step in my treatment.

Also, I feel I should correct the misconception that endocrinologists in the US always try to use "a permanent cure" rather than medication as a first option. It has to be taken into account that the US is not part of a public health system like much of Europe; therefore, many patients have to use health insurance companies to afford the medical treatment they require. Health insurance is usually part of an individual's employment, and probably the most common type of insurance is an HMO. HMO's (and possibly any other type of health insurance agencies) do not want to pay more for their user's healthcare than necessary, and RIA or surgery is far more expensive than medication alone. Unfortunately many things about US healthcare are based around costs and figures, but this fact would disprove any claims that 99% of patients with hyperthyroidism are sent off immediately for RIA (and 1% or so to surgery). However, this understanding of the US healthcare system might also shed some light as to why RIA is so preferred as a second option over surgery, as a quick dose of radiation costs less than having to check someone into hospital and keep her/him there for a few days time.

I'm glad you've found my information on thyroid surgery very helpful. The best thing you can do is to learn as much as you can before your surgery (if you indeed need it), as you will know more of what to expect afterwards and hopefully will recover and cope more quickly. I still believe surgery (and all it's risks) is a safer option than RIA, and it was certainly the best option for me.

All the best with your undergoing treatment, and if you have any more questions, I'd be happy to help out as best as I can.

Diane: Hello, I am a 35 yr old woman who had a left throidectomy 3 weeks ago. I also had 2 inconclusive FNA and the nodule that was once small became the size of an adams apple - yuck! Surgery removed all the nodules and the left half of my thyroid. Everything went well and I was home the next day, recovery was pretty easy too. Questions: How long after surgery were your thyroid levels checked? I am normally slender, but the last few days I seem to have blown up. Also, how would I know if my parathyroids were damaged? I never had a blood test in the hospital and have not had any blood work since the surgery. Any information would be appreciated - thanks so much
date: 11:01 pm - Sunday, 2 May, 2004

Hi Diane. Glad to hear your surgery was successful in removing all your nodules.

I would say that if you are gaining weight, it sounds like a symptom of hypothyroidism, which is the common aftermath of a thyroidectomy. My levels were continuously monitored in the hospital, which was why I ended up staying an extra day so as to check on my calcium levels, which were low after my surgery due to problems with my parathyroids. (Shocked actually that they didn't do this for you at the hospital!) I think I had another blood test done within the following month from my surgery, if not two weeks afterwards; I would generalise this within the month afterwards if not sooner.

The best way to test your parathyroids is again with a blood test. With your thyroid function test, you should also have your calcium levels measured (because that is what your parathyroids control). Your results will contain a scale for high to low levels for each part of the thyroid test, including T3, T4, TSH and calcium. If your parathyroids are not working properly, and this could be the case for life or just temporarily, you should be prescribed a suppliment to help boost your vitamin D and calcium levels and continue to have them checked regularly with your thyroid function tests.

I would suggest that you give your doctor's office a call to ask for a lab and an appointment to follow for when the results come in. When you have your bloodwork done, do make sure the nurse/phlebotomist has calcium on the paperwork or they will not run the test, and I've found they've forgotten nearly every time when I've had a lab(!) Hope your situation is sorted out soon -- Best,

Linda: I am a 47 year old woman that was diagnosed with Graves in 2000. I have been on Tapazol since Jan. 2001. I am scheduled for surgery on May 7, 2004. I found your website was exactly what I was looking for. First hand experience with surgery. I chose surgery for some of the very same reasons you did. I am interested in how much weight gain you had after the surgery. Were you able to lose it through exercise and healthy eating? I gained 10lbs since I have been on Tap. I exercise and count the calories but losing weight it a battle. I was wondering if this battle would be worse or better after surgery. Your input is appreciated.
date: 3:40 pm - Monday, 19 April, 2004

Hullo Linda, I'm glad you've found my website to be the ultimate resource! :)

I did have weight gain after my surgery. The problem was that I moved country, so I wasn't being looked after by my endocrinologist I was seeing pre-surgery. I gained about 2 stone in about 6 months; I was not best pleased! However, I've been slowly working it off.

I've had my medication adjusted to a combination of liothyroinine (T3 in pill form) and thyroxine, and I've taken up a keen hobby of swimming weekly and hill hiking on tortuous coast paths! I've also cut out a lot of supermarket meat and meat as much as I can without leaning too heavily on soya-based products (which actually inhibit thyroxine production and the ability for oral thyroxine to do it's job).

It may seem the impossible task, but the weight will come off if your persevere. What I have noticed is that it isn't necessarily the weight that is noticable, but the way my clothes fit better and my overall feeling of balance. You might actually gain pounds because muscle weighs more than fat, but you'll be fitter and toner. Best of luck to you Linda!

"hemyray": I'm a 31 year old girl, I've been on thyroid medication since probably 6 yrs, right now I opted for natural medication but some days I get so frustrated because my throat gets so swollen and my symptoms get very strong(hypotyroid), my question to you is,after been diagnosed and be on treatment for so long is there a way i could get surgery and be happy w/o putting more weight? I am very sad, frustrated and fat!
date: 4:44 pm - Monday, 12 April, 2004

Hiya - I can sympathise with your situation. It is very difficult to shift weight when you are hypothyroid, and it sounds like your symptoms are quite severe.

I would say definitely, you should consult an endocrinologist to run some thyroid function tests to see where you are at. You should be able to receive treatment whether or not you have had a 'break' from traditional medicine.

However, surgery is generally part of treatment for hyperthyroidism (an over-active thyroid gland) and not hypothyroidism. Unless you have nodules which need to be removed, you will generally be prescribed with a dosage of thyroxine (in one of it's many forms and brands), which will be slowly increased to bring you into a more stable setting and hopefully euthyroid status (balanced!).

Either way, I'd book an appointment with your doctor to start the wheels rolling. All the best,

Sandra Hedges: I have a question for you. I had a thyroidectomy in August. Unfortunately it was cancerous but I was told that I was cured. I went for radioactive iodine in November 2004. This is my question. My surgeon damaged all four parathyroice. Its already 7 months after my surgery and he claims that they still may work. My endocrinogogist tells me that they'll never work. I am taking 14 pills a day which may be for life. I'm not a pill taker and find all these pills very difficult to tolerate. What do you think about my parathyroids. Do you think that they eventually will work.
date: 8:22 am - Monday, 12 April, 2004

Hi Sandra, I too have had my parathyroids damaged after my subtotal thyroidectomy. Mine were left completely intact, but perhaps it's a case that they don't function properly once the thyroid is disturbed.

Since my surgery, I've been taking 25mg of Rocaltrol (Calcitriol) once/day to help me with my calcium and vitamin D levels. I don't enjoy pill-popping either (I don't think anyone does!), but I've tried to make it less of a hassle by taking daily vitamins with my medication or spacing them out through the day. I take my thyroxine one hour before I intend the pursuit of actually 'waking up', and I take my Rocaltrol with my vitamin C at tea time. It doesn't seem like I'm taking a whole chemist's drawer when I space pills out(!) and it also helps when you have someone else in the household take pills of some sort with you (if they aren't on medication, they can take some daily suppliments instead).

As for your actual question, I'm afraid I cannot answer that, but I would have thought it was unlikely that they will return to function 6 months post-op. It is good to keep having your calcium levels measured with every blood test that you have for your thyroid function test, and I still do that myself just to ensure that I am at a safe level. All the best Sandra,

Linda Percy: Hi I used to have an over active thyroid and was taking Carbimazole for 6+ years I repeatedly asked my GP to wean me off but he insisted I should stay on it. After taking Carbimazole for about 3 years my joints started to become stiff and painful but my GP insisted it was nothing to do with the medication. During the year 1999 my joints were becoming more painful and I began to feel very old. I was referred to a consultant at my local hospital and had various tests,x-rays etc i don't know what the results were apart from Spondilitis which many people get because of wear + tear. I also developed asthma in October of that year I had a spotaneus pneumothorax and whilst in hospital I asked the Doctor if I could come off of Carbimazole and explained that I had been taking it for many years and was worried about side effects of long term use he told me to stop taking it immediately which I did I have now been diagnosed with Fybromyalgia and an under active thyroid gland this is quite common after an overactive one according to my GP so I am now taking thyroxine. The best treatment for my Fybromalgia is Ibuprofen because it reduces muscle information but it irritates the lining of my stomache and I have just found out that I have gallstones which I know can happen to anyone. I would like to seek legal advice with regard the long term use of Carbimazole and would really like to know if there are any other thyrooid patients with similar problems. I realise I must sound like a real old moaner I am not really but I feel I should be at the prime of my life and able to enjoy my grandchildren but right now I am struggling to cope with a full time job. thank you for your time Linda
date: 2:35 pm - Friday, 2 April, 2004

Hiya Linda, I'm sorry to hear that you've had a long history of medical problems all starting with an over-active thyroid! Your doctor is right, the common outcome of hyperthyroiditis is hypothyroiditis; however, I'm always a keen advocate of second opinions, and if you are able to financially afford it (I'm not sure where you're based), I would always have someone else have a go at assessing your situation without disclosing what your first doctor has said.

In further to your post, I'm not sure that taking legal action will actually solve your matters. In what I've been reading,

A rare side effect is bone marrow depression which can present in 1 in 1000 patients. This presents as a severe sore throat, mouth ulcers, fever. If it occurs cease the drug and contact your doctor immediately. The suppression of the bone marrow is often temporary with the bone marrow recovering after 1-2 week.

is the most hazardous of three side-effects listed from the site I've linked in your original post above. Perhaps I haven't looked deep enough, but I haven't seen any direct link between Carbimazole and Fibromyalgia in a quick search, and I should think this will need to be the pinnacle of your case if you are to endeavour upon a legal battle.

If I know of anyone else who has the same symptoms as yourself, I shall direct them to contact you by the e-mail you have left here. Best of luck & health,

colleen: thank you for the great website. just had surgery 7 days ago, and pretty much feel the same. i cannot stay focused for the life of me. the doctor doesn't want to see me for another 3 months. is that common? i'm on Synthroid 100mg, for only 6 days now. also have alot of racing heart stuff, so still on Aetenol 25mg. everyone is expecting me to feel great, so i feel the expectations of all of them. anyway i don't know if i did the right thing, but didn't have much of a choice either, rai wasn't an option for me either. i would love to hear from you, since i know no one who has this. thanks alot for listening, colleen p.s. the surgeon assures me that the graves disease is no longer in me, except maybe some thyroid serum for about 3 weeks, what do you think?
date: 2:49 pm - Saturday, 7 February 2004

Hiya Colleen, thank you for the feedback, it's greatly appreciated!

To be honest, I'm not sure how long it took me to feel 'different' after having my sub-total thyroidectomy or any major change with my thyroid because it is very much a gradual process when things do change. Even something as eventful as removing most of the thyroid gland took time to make an impact on my levels. If you are experiencing heart racing though, I think it's important to mention that to your doctor if it carries on.

I suppose some doctors work differently; I think I had an appointment to see my endocrinologist in a month after my surgery with a blood test to review my thyroid levels post-surgery. If you feel you need to see your doctor sooner, why not give her/him a call and tell them what is going on? Even if it's only one of the other doctors within the surgery (practice), it can be reassuring to have someone tell you things will be okay and that it is the common protocol of your doctor.

Expectations, as far as my experiences have been, can be dangerous things. Try not to get to caught up about feeling better right away; however, you are half way through the woods, so all is not lost. Finding the right dosages after a surgery can take anything from six to twelve months (or possibly longer); this is still less time than when an individual undergoes RIA. I would suggest the following:

a) be proud of yourself for reaching this far -- surgery is a big option and it takes a long time to recover from (up to a year)

b) develop a regular exercise schedule (one that's realistic, and do things you enjoy doing, not just because it's a fad regime at the moment) as it does have psychological and physiological benefits

c) eat a thyroid-friendly diet; I plan on expanding my site on this issue, but basically, keep it balanced, use the food pyramid for a guide, and try to avoid eating too much soy-based products, as they can have a nullifying effect on thyroxine (whether your body produces it naturally or you're taking it via pills, like yourself)

and finally d) be patient with yourself. Like I've stated above, your body isn't meant to go through sudden and immediate changes, as your thyroid affects many other systems in your body. Write in a journal specifically for your thyroid, tracking your diet, sleeping, and your general mood for each day, and also taking note of anything you notice that you want to mention next time you speak to your doctor. Is your skin feeling dry/itchy? Are you tired most of the day? Are you putting on or losing weight? How are your clothes fitting? Have a friend you can talk to about this, just to offload it off your chest, someone you can tell your frustrations to or just have a cry when you feel it isn't fair and things seem to never be going right (I have some communities linked on this site that would be suitable for this purpose if you don't feel anyone you know personally suits this position).

re: Graves' Disease gone?

Well, as far as I know, Graves' is an auto-immune disorder, meaning it's something that you live with for life; it basically means that your body is attacking itself. Graves' can be controlled and thus "cured" by keeping the thyroid levels down either with suppression from medication (like Tapazole), ablating/killing thyroid tissue with radiation (RIA), or by surgical removal of thyroid tissue. Therefore, you never really 'get rid' of Graves', it just goes into remission. So, what I gather your surgeon was trying to say is that yes, she/he believes that enough thyroid tissue has been removed to control Graves', so your surgery has been very successful.

Best of luck to you, Colleen. I hope I've managed to help you with your queries, and if there's anything else you think I can help you with, let me know!

Jane: Thank you for responding to my query that I sent you in July - it was much appreciated. I kept my appointment on 6 Oct and, even though I didn't have any of the symptoms on the doctor's checklist, I was prescribed Carbimazol. After the appointment I was given a blood test. Yesterday (24 Oct) I received a letter, advising that the results of the blood test showed my thyroid was no longer overactive and I should stop taking the medication. I read that over 25% of cases go into remission within one year without any treatment. Apart from the fact that it took the hospital nearly three weeks to alert me to the fact that I was taking a drug unnecessarily, I feel angry that doctors do not appear to take account of the fact that hyperthryoidism can "go away" and seem to hand out drugs wtihout properly assessing the situation. I have been warned by my GP that it may come back. Is this so? Do you know if there are any figures for this? Is it not possible that it can go away for good? My own view is that hyperthyroidism is caused by stress, having lost my father suddenly and then four month later finding my husband dead. Sorry this is quite protracted, but I would appreciate your thoughts on all this please.
date: 1:33 pm - Saturday, 25 October 2003

No worries, Jane. I'm glad I can be of some help.

First off, I'm really sorry to hear about your father and husband. I can't imagine what you've been going through. I hope you're doing OK.

It's possible that overactive thyroid glands (hyperthyroidism) can simply go into remission, but even if 25% of hyperthyroid sufferers were in this situation, I wouldn't have considered it worth the risk to the other 75% of people who develop chronic thyroid disorders. How was your doctor to know you weren't to be part of the majority? I think they did the right thing by trying to control your levels at the time with the information they had, seeing as it wouldn't have been morally right to let you carry on with your hormone levels out of balance with the greater possibility of a chronic illness.

Yes, hyperthyroidism can return. Medication used as thyroxine suppressants, like Carbimazole, are only a temporary solution with chronic thyroid disorders, unless it permanently goes into remission. The point of using them as a first method of treatment is to assess whether or not the thyroid imbalance is indeed a chronic disorder and to control the symptoms and signs of an overactive thyroid; it's a method that can be easily controlled as opposed to radiation (RIA) or surgery. Your doctor's checklist may not have been comprehensive. The list I have on this site will be no where near comprehensive either; I've seen them as long as an A4, or as short as what I have, which are the common symptoms. I should think they had reasonable evidence for putting you on Carbimazole. I don't know any specific figures for the population who go into complete remission for life, but I know that those cases are small; all of my endocrinologists have confirmed those situations are a slim minority. It is possible that it will not return, but you'll probably have to go through some regular bloodwork to determine if this is indeed the case.

Perhaps your thyroid hormones have gone out of normal ranges due to stress, but I haven't come across anything of that nature just yet. I understand how you've come up with that theory, and it makes plausible sense if indeed your case of hyperthyroidism is transient, but there's no way to validate this until time passes and your bloodwork remains in a normal range. In the meantime, just try to be as patient as you can be. Unfortunately there's no way to rush this and have an answer, but I hope you don't have to go through any further chaos in the future whether with your thyroid or your family.

All the best, and again, you can always write me. Take care.

ast: =) great site, found it from LJ just had my surgery (but not because i was hyper)... Q: i see you mentioned vitamin E..when did u start applying it? i just finished with 5 days of antibiotic cream the dr gave, feels too early to start applying vit E now..
date: 9:44 am - Monday, 29 September 2003

Hiya ast, thanks for the feedback on the site; it's always appreciated to know if what I've published has been helpful in any way. :)

Yes, vitamin E is excellent for helping the skin to heal back smoothly after an incision. I'm having to really struggle to remember just when I started applying vitamin E, but I remember having a plastic strip over my stitches for a week after my thyroidectomy. After my stitches were removed, I cleaned the incision two times per day with hydrogen peroxide and applied vitamin E (after my morning shower and then again before going to bed). So, that would be one week post-surgery aka: after stitches are removed. You wouldn't want your skin to heal too quickly around your stitches or you'd have another problem on your hands, eh? ;)

All the best with your recovery.

Erica Wille: When you say it took you a year to feel better, what does this mean? I am in law school right now and have a month long break over Christmas. Is that long enough to feel basically normal by the time classes start? Should I wait until summer? Why did you decide against RIA?
date: 10:08 pm - Tuesday, 9 September 2003

Hiya Erica - After my thyroidectomy, it took time to recover from the surgery itself, and it took a year to find a balance in thyroid hormone medication (thyroxine) with my doctor. Unfortunately, there is no guidebook other than to place the minimum amount as a prescription dosage for four to six weeks and see how the patient reacts. If more thyroxine is needed, the dosage is increased, usually by incraments of 25 micrograms, and then followed by another four to six weeks to see how the blood levels measure.

Thyroxine levels are measured between ranges of what is considered normal level ranges for a population. You may find that you're on the upper part of that range, or in the middle or slightly lower, but the aim is to have your results in range with you, as the patient, feeling better.

There is no quick fix to this. I had to go through it all through both universities I attended as well, so I can fully empathise. It doesn't make things any easier, but I'm afraid the only things you can do is a.) be patient with yourself b.) exercise regularly and keep a healthy diet so that you're doing the best you can to keep your body responsive to the thyroxine and c.) keep an open line of communication with your endocrinologist--this is easy, because you can always keep a list of things that you think you need to address when they actually occur, then you'll be ready when you have an appointment next.

Why did I opt against RIA... that's a long story! ;)

Basically, I feel that since the 1950's when RIA was first adopted as a means of treatment for Graves' and hyperthyroidism, nothing much has progressed since. It's been an open and shut case in America, and yet not many people seem to have had a satisfactory experience. I'll try to keep this simple by bulleting my reasons:

- I like to limit my exposure to radiation to an absolute minimum. Radiation cannot be contained to only one part of the body, although it is consumed to destroy thyroid tissue. It causes side-effects, such as difficulties with the salivation glands, extremely dry itchy skin, and the dictation that you are to avoid becoming impregnated one year after a dosage. Kind of creepy to me.

- The US is gung-ho on RIA because it's cheaper than surgery, doesn't take as long (according to the way it's done there), and they gloat about how 99% of all hyperthyroid cases are treated with RIA as reason why everyone should have it done. You go in, you swallow your tablet, you leave, you come back for re-assessment, you have your blood levels checked in a few weeks and you're advised not to remain within 3 metres of another being. In the UK, it's performed within the hospital over a week, where the individual is completely quarantined in a lead-walled room, where the individual is monitored regularly. Not to mention that Europe cannot understand why the US will not move beyond this technique to safer realms or stop using it altogether due to the lists of side effects. There's a lot of debate about Europe's critiques on the internet, and I really ought to link them up here. Check back soon and I'll hopefully have them up when you visit.

- I had two cold nodules in the lower-left lobe of my thyroid gland; this particular location has been cited in literature as being highly prone to cancer. I felt that I would benefit to just have the nodules removed and not have cancer hanging over my head.

- I didn't like the way my endocrinologist was unwilling to discuss the matter of having a surgery instead. I felt that as a patient, I should have all my options discussed, not just what was preferable by my medical insurance. I'm convinced that doctors in the US convince people that the only measure to take is RIA because of medical insurance not willing to pay out for the surgery. My medical insurance didn't have my best interest at heart, and I didn't want to work with a doctor that was taking the same stance. I switched and found an endocrinologist that wanted to work with me, especially so I knew the risks of both procedures and what we thought was best for me.

Phew - sorry, there's no easy way to condense this! I could go on for ages, but those are the main points. Please let me know if this was sufficient or if I've struck more questions for you.

Jane: Having recently been told that my thryoid is "slightly overactive" I have been searching for more information prior to a hospital appointment. What I cannot understand is: If someone is hyperthyroid, it appears treatment given invariably results in hypothyroidism. Having read the details of both forms, I think I would rather stay hyper. What are your thoughts?
date: 4:19 pm - Tuesday, 29 July 2003

Hiya Jane,

I would tend to agree that hyperthyroidism appears to be the better of the two evils; however, hyperthyroidism is not something one can live with indefinitely.

An overactive thyroid produces an overactive metabolism, which means your body starts to actually 'eat' itself. The weightloss that occurs so rapidly is due to a loss of lean muscle and tissue, and as you might have guessed by now, you can't go for very long in that state. Likewise, having irregular heartbeats and breath as well as insomnia is not a good way to live either. After not sleeping properly for almost a year, it was great for spending more time in the books, but I felt absolutely horrible every single day.

If you go on for too long with an overactive thyroid, you'd eventually have to be admitted to a hospital. I'm afraid going to hypothyroidism before finding a happy medium is an inevitable process, although sometimes it takes less time than the estimated year to find the correct dosage for your normal levels. The trick is to be patient with yourself and your specialist, and remember that it isn't a life sentence. If there's anything more I can help with, please let me know!

kristine: I was just diagnoised with graves disease. and i also have cold spots on my nodules. iam going to be receiving radioactive iodine can you tell me why you didnt choose that method
date: 5:10 pm - Wednesday, 14 August 2002

I didn't choose RAI for a few reasons.

1. I personally do not handle radiation very well.
2. I don't like the idea of having radiation. It does have side-effects which I thought outwieghed those of having surgery.
3. My FNA results were not conclusive, and I wanted my nodules physically removed and not chemically dissolved.

I did discuss this with both my endocrinologist and my surgeon though; they needed to make sure that I was aware that surgery had it's con's too.

Lynda Geymonat: Hi there. I would like to know if you have heard of taking Fucus spp. as a substitue for low thyroid. My thyroid seems to be low as I have all they sysmtoms of hypothyroiditis. Thanks so much
date: 7:28 pm - Monday, 19 August 2002

I've had to do some research on that one. I found "A 100% natural diet patch that acts as a mild thyroid stimulant it's active ingredient is iodine, extracted from sea kelp fucus Vesiculous," which leads me to believe it's only being used as something to help the never-ending diet scheme.

Have you actually been diagnosed with hypothyroiditis? If you haven't and you believe you're symptomatic, you really need to see your GP and have a thyroid function test done. If you have been diagnosed, I would suggest speaking to your GP about it anyway, as it is a stimulant and not a substitute for thyroxine.

saleh: follicular cells, some of which are with mild nuclear atypia and hurthle cells change.Cyst macrophages are also seen. what do tink of this microscopy FNA" powered by SMARTpages.com
date: 9:48 am - Thursday, 22 August 2002

Saleh, could you please give me the direct URL to which you are referring to please?
Cheers.