Thyroid..graves Disease

[cognos]

I have graves disease, a hyper active thyroid, and take tapazol. i feel pretty good.. My doctor and specialist advise to get the radiation knock out and have the thyroid partially destroyed, then it will be hypo and you will have to take other medication to knock the levels back up.

I am hesitant to do that. My wife's relative is a doctor in LOS, and she is also a teacher of doctors. She studied for 3 years in Canada, and by all accounts she knows quite a bit. She advises i do NOT get the thyroid radiation..

Questions 1. has anyone gone from Hyper to hypo, and if so, how did it go?

2. has anyone done the same as me, stayed Hyper, and refused thus far to go "hypo"?

3. any ideas in general how to proceed?

..from what I have read, a hypo thyroid is easier to manage than a hyper one, but I feel that once you destroy part of the thyroid, well its destroyed and you can't get it back. i am inclined to think that if I wait, as I feel pretty good, they will come up with some other treatment one of these days.

Thanks for any input or advice any of you may have. Sincerely, Dean

[Sheryl]

It is true that most people treated with radioactive iodine sooner or later become hypothyroid.

How long have you been on the tapazol? Because up to 50% of patients treated with antithyroid medication for a full 2 years go into a permanent remission.

If it hasn't been 2 years yet, and assuming that your symptoms are well controlled, I think it would be reasonable to wait to see if you can get remission without the radioactive therapy.

If you want a second opinion there is a very good specialist at Bumrungrad:

Dr. Rosanee Valyasevi

Specialty: Medicine - Endocrinology (Diabetes)

Language: Spoken: English,Thai

Qualifications: Medical School:

- M.D., Faculty of Medicine (First Class Honor), Siriraj Hospital, Mahidol University, Thailand, 1988

Board Certifications:

- Diploma of The Thai Board of Internal Medicine, 1992

- Diplomate of The American Board of Internal Medicine, 2003

- Diplomate of The American Board of Endocrinology, Diabetes and Metabolism,2004

Fellowships:

- Endocrinology, Howard University Hospital, USA, 1993-1995

- Endocrinology, Mayo Clinic, USA, 1997-2000

Special Clinical Interests:

- Thyroid Diseases, Parathyroid and Calcium disorders

Day Time Location

Tue 09:00 - 15:00 NS 16A (Endocrine/Neuro)

Wed 09:00 - 15:00 NS 16A (Endocrine/Neuro)

Thu 09:00 - 15:00 NS 16A (Endocrine/Neuro)

Fri 09:00 - 15:00 NS 16A (Endocrine/Neuro)

Sun 09:00 - 15:00 NS 16A (Endocrine/Neuro)

[eek]

Cognos, if you do decide to get a second opinion, Dr Rosanee is absolutely fantastic. Sheryl recommended her to me a couple of years back and she got my health on track and also recommended me a Doctor here in Chiang Mai. I only needed 2 visits (if i recall correctly). The first one she basically told me to get off all meds so she can see what is going on with my thyroid, the second visit some time later, she put me through a variety of tests. She sent my results to me via email so i didnt have to travel down again. It wasnt cheap..about 5000 baht, maybe a little over (for all the tests including an ultrasound on a goiter..so may not be as expensive for you..?), but 2 visits was all i needed. Those two visits saved me..and im serious...i was truly messed up.

I have a couple of threads on this forum about it if you wish to read up at all.

(I have Hashimotos Thyroditis btw and take 75 mg Euthyrox now to keep the levels stable.)

[femi fan]

In category of #3...

In case no-one's brought it to your attention, in the meanwhile eat the right diet. It can be a great support, and plenty of incidences of reversal of damage have been reported on, although i don't know about your condition in particular. But i do know that certain foods should be eaten, while certain ones be avoided.

Plenty of good drinks too, to get all the right nutrients into your body to help it fight your particular health complaint. Well worth getting decent dietary advice in my opinion.

Good luck with getting a decent recovery.

[cognos]

thanks to you 3 for your feedback, i really appreciate it.. been on tapazol almost 4 years.. started on 2 pills ( 5 mg) per day..weaned down to one pill, half a pill and off all medication, but symptoms came back.. now I'm weaning down gradually again and so far the numbers are okay.. i will try going off it again..

Sheryl,..next time I am in BKK I will check that doctor

Thanks so much

[fishhooks]

Think I will try to obtain an appointment with the above mentioned specialist as well.

My GP a couple of years back suspected that I had a Low Thyroid problem as I seemed to be putting on weight at a fairly fast rate.

After an ultra scan of the Thyroid (I think that's what it was called) and blood tests it was determined that I was Hypo, and was put on Oroxine 100 microgram per day. I am 64.

My mother was "Hyperactive"

This is the common medication prescribed in Australia for the condition. Unfortunately it needs to be kept refrigerated which is a real pain when traveling.

Of course the inevatible happened and I left a whole box in a hotel refrigerator in Singapore a month or so ago.

When I got to Bangkok a pharmacy gave me Euthyrox and said that is the common Hypo medication here and recommended just taking 50microgram a day until back home in Australia for another test. Apparently Oroxine is not known or used outside Australia??

My concern since taking the Oroxine, now for about 2 years, is that the weight gain, which my GP suspected was due to being Hypo, has not reduced and I'm getting concerned about that.

Recent blood tests in Australia show the figures are correct, but I think I have put on more weight with the same exercise and food intake, since being on Hypo medications.

[Sheryl]

Oroxine is thyroxine and Euthyrox is levothyroxine, a synthetic form of thyroxine. So they are virtually the same except that the Oroxine is not a synthetic.

Non-synthetic thyroxine is not available in Thailand although natural thyroid extract is.

As far as is known, the response to levothyroxine and thyroxine is the same. of course, you are now on a lower does than you had been on back home, which could result in undercorrecting your condition and hence continued symptoms. However if I read your post correctly you had a thyroid panel done in Australia afterr changing to this lower dosage that showed normal results, is that correct? If so then the lower dose not the problem.

Also if I read correctly, even on the higher dose your problem with weight gain continued. If so then 2 possibilities come to mind:

1) Factors other than your thyroid function are causing the weight gain. I don't know your age, but as people get older, the exact same intake and exercise that gave a normal weight starts to put on the pounds. Or, without knowing it you may be consuming more calories than before. If you eat out or get take out food a lot, these may contain far more oil and sugar than similiar foods did back home as Thais tend to be quite lavish with this. even something as simple as potato chips contain far more fat in Thailand than in the West and sugar to boot. Or, without realizing it, your portions may have grown. Also need to consider beer/alcohol intake if you drink, even a small increase will add weight quickly, and Thai beer is more fattening than most Western beers.

2) Other possibility is more complicated to explain. There are 2 thyroid hormones, T3 and T4. Both the Oroxine you got before and the Euthyrox you are taking now contain only T4. It is common practice to supplement with only T4 because in most people the body automatically converts some of the T4 to T3 in correct amount. However there are some people for whom this does not hold true and who therefore do better taking actual thyroid extract since that contains both T3 and T4. This issue is a bit controversial. There are websites claiming that everyone should take only thyroid extract, some sponsored by companies that manufacture it but also some set up by patient groups. Medical experts tend to disagree and to be concerned that use of thyroid extract may result in an excessive amount of free T3.

What is sure is that doctors need to test not only the TSH level but also the free T3 and T4, and that if replacement with thyroxine/levothyroxine alone is not producing normal values in all 3 parameters there is a case to be made for switching to thyroid extract.

It is also the case that there are people out there who insist based on their personal experience that despite normal lab values they had symptoms consistent with hypothyroidism which were relieved by low doses of thyroid extract but not by thyroxine alone. Make of that what you will.

Suggest you consult the doctor mentioned above, get a full thyroid panel (TSH, free T3/T4) and then take it from there.

[eek]

Edit: Posted this before Sheryls above reply. Ooh shes fast lol!

Good luck fishhooks. I hope you will get to the bottom of what is going on. Ive never heard of Oroxine, but thankfully Euthyrox doesnt need to be refrigerated. The pills are small and available everywhere and are very cheap. Maybe it will be a better solution for you, but obviously i recommend getting tests done rather than guessing amounts and substituting one medicine for another. Maybe Sheryl will know if its ok just to substitute in the meantime or not, or even knows somewhere you source Oroxine. But sounds like you really do need another opinion because you dont seem to be improving much (however, I was told that with thyroid problems its important to take a gentle approach to it and gradually increase/decrease medicine over a period of time and tests. But as you have been taking for over 2 years without improvement...well thats just too long! Very strange given your blood test results!)

Edited February 10, 2010 by eek

[fishhooks]

Many thanks for the prompt advice.

Re the change-over to Euthyrox, I did this on spec only recently following the loss of my 100microG Oroxine and with the advice of a Pharmacist known to me in Bangkok. He advised to start on the lower dose as it was a change to a slightly different type of medication and to get another series of tests when back in Australia in March. I "imagine" then I will go back on Oroxine.

I also emailed my own doctor who seemed mainly of the opinion to do the tests asap when back home.

What I'm not quite up on though: What are the practical affects of this Hypo condition. I understand the weight gain aspect if your system is not ticking over at a rate that it should be, but had my doctor originally a couple of years back not "suspected" the condition and ordered the tests, I reckon I would still be none the wiser as my general health is quite good.

As Sheryl points out, the weight gain thing could also be part and parcel of a not-too-strict diet and not exercising enough. I don't drink.

I am 64, my mother suffered from Hyperactive condition and I believe this is a more serious form of a Thyroid condition which has really to be kept in check.

So here goes what might be a stupid question...............What if my weight was fine and health good and this Hypo condition had never been indicated or detected?

Edited February 11, 2010 by fishhooks

[Sheryl]

Severe hypothyroidism by lab tests will simply not occur without symptoms. If it seems to, most likely explanation is lab error. Mild cases may be asymotomatic or have symptoms so gradual and subtle they aren't noticed. In addition to weight gain, these may include sluggishness in the morning, dry skin, thinning of the hair/more hair loss than usual, and trouble concentrating/forgetfulness. All, of course, things that could have other explanations. Sometimes in people with borderline lab values the only way to know if thyroid is the culprit is a trial of low dose supplementation.

Equally so, some people with lab values at the lower end of the official normal range may be symptomatic. Need to remember that the cut-off for lab values are a bit arbitrary, may vary slightly from one facility to another and also periodically get revised. People may vary in how they respond to levels that are near the cut off ranges.

All that said, it is important to know that in many cases of people with lab values indicative of hypothyroidism but no symptoms will over time progress to more severe, symptomatic hypothyroidism and that this is especially true of people with an autoimmune condition called Hashimoto's thyroiditis,a disease which can present as either hypo or hyperthyroid (and sometimes alternate between these states) and which seems to have a hereditary aspect i.e. it is more common in people with a family history of thyroid disease.

Since you say your father had a thyroid condition, it would be wise to see a specialist as previously advised. If you can get your prior lab results from your doctor in Australia before hand to show her this will help in the diagnosis.

[sleepyjohn]

Hi Sheryl

while we're on thyroids interested in your opinion.

I have a very enlarged thyroid, visible, and 6.3 x 5.4 x 4.8cm. Big enough to get a bit of a throttling feeling though that's receded probably as the nerves adjust. It's apparently tucking down just into my ribcage.

I have had three ultrasounds over 6 months which show it as fairly much homogenous so probably benign though it is still gradually growing.

Two sets of needle aspirations, the first suspicious, the second could not be read.

Unfortunately my stimulating hormone level is pretty normal, so no easy medicinal fixes or reasons for the tumour.

The attitude of the endocrinologist seems to be to monitor every 12 weeks with surgery as necessary.

Is this a good plan?

He talks about a 5% chance of a very malignant cancer, but as I see it that's across the board including those with a swelling due to hypo or hyper (easily most) which are generally much safer and more treatable, which doesn't apply to me. Thereby interested in how elevated my (bad) chances are and if he's taking this into account as it seems to me one should. I shall certainly talk about it to him at an appointment next week for a new biopsy result but interested in further good opinion.

thanx John

Edited February 11, 2010 by sleepyjohn

[fishhooks]

What I may do, if you think this is a reasonable plan...........Seeing I lost the Oroxine a month back and have only been taking a low dose of Euthyrox and will be in Asia for another 5 weeks, is try to get an appointment with Dr Valyasevi. I usually stay quite close to Bumrungrad.

Perhaps do the basic tests which are preferred at this end and take them back to Australia to compare.

Would you have a ball-park idea of the cost of an appointment and tests with this doctor at Bumrungrad?

Does one need to book days in advance or just front up at the times mentioned above?

I have good travel insurance, but I doubt they would cover the cost of me losing the Oroxine and getting tests done here.

I imagine it would be a good idea to go off the Euthyrox altogether for a period prior to the tests..........If that is the way to go!

I can't see me keeling over, I feel quite fine with this very low dose of Euthyrox that I'm taking now, as I did before going on any medication in the first place.

[Sheryl]

Would you have a ball-park idea of the cost of an appointment and tests with this doctor at Bumrungrad?

Does one need to book days in advance or just front up at the times mentioned above?

I have good travel insurance, but I doubt they would cover the cost of me losing the Oroxine and getting tests done here.

Best to book in advance, can do so online.

Consultation probably around 1,000 baht. For the tests, would imagine a few thousand baht but don't really know. Eek had them done there not so long back, maybe PM and ask her.

If your travel insurance includes outpatient treatment I don't see why it wouldn't cover this Of course if you have coverage only for hospital care then you'll have to pay out of pocket.

I imagine it would be a good idea to go off the Euthyrox altogether for a period prior to the tests..........If that is the way to go!

I can't see me keeling over, I feel quite fine with this very low dose of Euthyrox that I'm taking now, as I did before going on any medication in the first place.

Don't go off meds until you see her and unless she then advises it. It will otherwise confuse things especially as you have been on thyroid replacement for some time.

[Sheryl]

Hi Sheryl

while we're on thyroids interested in your opinion.

I have a very enlarged thyroid, visible, and 6.3 x 5.4 x 4.8cm. Big enough to get a bit of a throttling feeling though that's receded probably as the nerves adjust. It's apparently tucking down just into my ribcage.

I have had three ultrasounds over 6 months which show it as fairly much homogenous so probably benign though it is still gradually growing.

Two sets of needle aspirations, the first suspicious, the second could not be read.

Unfortunately my stimulating hormone level is pretty normal, so no easy medicinal fixes or reasons for the tumour.

The attitude of the endocrinologist seems to be to monitor every 12 weeks with surgery as necessary.

Is this a good plan?

He talks about a 5% chance of a very malignant cancer, but as I see it that's across the board including those with a swelling due to hypo or hyper (easily most) which are generally much safer and more treatable, which doesn't apply to me. Thereby interested in how elevated my (bad) chances are and if he's taking this into account as it seems to me one should. I shall certainly talk about it to him at an appointment next week for a new biopsy result but interested in further good opinion.

thanx John

John,

1. Before I get into your question -- are you on, or have you been on, any chronic medications? Because some drugs can cause this e.g. amiodarone, lithium etc

2. With one needle aspiration "suspicious" and the other unreadable it is really hard to say anything about your odds of this being malignant.

3. Malignant tumors of the thyroid are among the most curable cancers if treated early. You should therefore be aggressive about excluding the possibility of malignancy, and might want to consider getting a second open if there is still any doubt once you have the results of the new biopsy.

Good luck

[Levanter]

Going back to the original question about staying hyper or taking the iodine radiation and risk going hypo ...

I was diagnosed with subclinical hyperthyroidism several years back and kept track of things with a blood test every 6 months. When one blood test showed that I was borderline clinical, I was sent to the university hospital's specialist. We followed it up with an ultrasound and several blood tests, with the results often swinging back to subclinical. After two months of that, I finally decided to start taking medication (the doctor left the decision up to me). However, I was due to return to Thailand at the beginning of June, so we started talking about longterm treatment options (i.e. medication vs irradiation).

Basically, there isn't much difference between the medications for hypothyroidism and hyperthyroidism in terms of overall safety profile or frequency of medication. The only major difference mentioned was that thyroid hormone supplements were considered safer for women to take during pregnancy, so females in their fertile years may want to opt for the risk of going hypothyroid, rather than staying with hyperthyroid treatment.

In any case, I took the radiation treatment, and was finally able to stop taking my medication (propylthiouracil) about 3 months afterwards. I just had a blood test done a few weeks ago (about a year and a half after stopping medication), and all the indicators are at normal levels.