General Medicine

» princesssoft - Graves' Disease and Side Effects

Hi there
I'm a 22 year old female living in the UK, I was diagnosed with thyrotoxicosis in December 2007 and there was a 4 month waiting list to see the thyroid specialist. After seeing the specialist I was diagnosed with Graves' Disease.
From December-March I was treated with Carbimazole (by my GP), my thyroid level was 58 (I think it should be 24?) to start with and I was started on 15mg of Carbimazole and 160mg Inderal LA. After 1 month my GP upped the Carbimazole doze to 20mg and within 1 week of that I had really unbearable joint pain. He halved the doze to 10mg because my thyroid level was now 24, then the next week halved it to 5mg because the joint pain was still really bad. Within 2 weeks of this my thyroid level was back up to 36 and he increased the Carbimazole to 10mg again.
In the middle of March this year, I finally saw the thyroid specialist who diagnosed me with Graves' and upped the Carbimazole to 20mg again and has said I should stay at this doze for 6 weeks.
Now I'm having really bad problems, the joint pain isn't so bad this time, but I've started getting headaches every day, I got them when I was taking 10mg but now I'm on 20mg they're almost unbearable. I really don't know if I'm best to try to stick them out, alter the Carbimazole doze myself or see my GP?
I'm also finding that I'm cold all the time, feeling a bit emotional, really really tired and I don't know if this because I'm stressed about the side effects, or if these symptoms are coming from the thyroid.
If anyone has any advice or has a story similar to mine to tell I'd be really grateful for some input - the world can seem like a lonely place when you have Graves'!
A

-- posted by princesssoft

» nurseheatherone - Avoiding Iodine

In response to Avoiding Iodine posted by daisyelaine:
Hi Elaine,
I just got my first thyroid panel since I have been pregnant and wanted to run the numbers by you. My TSH is 1,FT4 1.12,FT3 303 this is at about 5-6 weeks from my LMP, just wanted to see if these are pretty normal.
Thanks again, Heather

-- posted by nurseheatherone

» fivebreaths - re: low TSH

hi Elaine,

I haven't posted in a long while. I tried going back through the postings to find the answer to my question, as I know you've answered this before, but I couldn't find one.
I was dx'd w/ Graves a year and a half ago. I've been on a low dosage of methimazole for mostly a year now. My last labwork last week shows my T-4 and T-3 are in the normal range, but the TSH is low. My doctor tells me the low TSH is an indictor that I am still hyperthyroid, and she wants me to continue taking the methimazole(5mgs). I have already gained 25 lbs( i'm one of the freaks that gained weight w/ a hyper-thyroid), have hair which has thinned by half (thank God it was thick to begin with), etc and I'm not even hypothryroid yet.
Can you share with me, what exactly it means to show normal levels of the thyroid hormones, but to still have a low TSH, and would my dx still be Graves ? Am I out of the woods, I wonder??and also--why I should stay on the meth? is that important?
Lastly, do all Graves patients have a thyroid that is just inevitably burning itself out, and inevitably becoming hypothyroid?
thank you. I look forward ot your reply. And thank you for all your help .

-- posted by fivebreaths

» Elaine Moore - RAI treatment next week yet ...

In response to RAI treatment next week yet ... posted by wendyc20:

Hi Wendy,
I had trouble accessing the discussion board and hope I'm not too late to help you with your decision. I agree with your parents that you should wait. Graves' disease is a self-limiting disorder and most everyone can achieve remission using anti-thyroid drugs (ATDs) like Tapazole. Unfortunately, not all doctors know how to use it.

Most importantly, meds can't be used for a certain timeframe, for instance a year or two, because we're all different. If we're exposed to certain environmental triggers (such as stress, high levels of dietary iodine in fast and processed food, cigarette smoke, aspartame, etc) remission takes longer. Studies also show that long-term (average 4 years) use of a low dose ATD is associated with the highest rate of permanent remission.

And while ATDs will lower your thyroid hormone levels, low levels don't mean that you're in remission. The idea is to reduce the dose of meds over time until you're using a very low dose, like 1.25 mg daily. If your TSH level is normal after 6-8 weeks on this dose or if your TSI antibody level is low, then remission is suspected. Even then, you'd wean off meds slowly so as not to stimulate your immune system.

Radioiodine is a potent toxin and the effects of RAI are long-lasting, with thyroid function continuing to decline for more than 10 years. Also, because it's a toxin radioiodine stimulates your immune system to produce more thyroid antibodies. This increases your risk of thyroid eye disease, pretibial myxedema, and other autoimmune diseases. Best to you, Elaine

» Elaine Moore - Tapazole & dizziness

In response to Tapazole & dizziness posted by Sheperdoodle:

Hi,
I should have mentioned before that it's normal and expected to have transient hyperthyroid symptoms whenever you increase your dose of replacement hormone or decrease your ATD dose. This doesn't mean that you're hyperthyroid. When levels have been too low for your body's needs, your cells stockpile thyroid hormone to help prevent future deficiencies. This causes the temporary symptoms. They generally resolve within a week unless you truly are hyperthyroid.

For example, when I first started Armour I was on a very low dose (1/4 of what I'm on now and very hypothyroid). But for a week I had palpitations and hot flashes within an hour of my dose. These naturally resolved and over time I increased my dose. Had I not been warned that this could happen I would have thought I was hyperthyroid.

This is one of the reasons changes in ATDs and doses of replacement hormone should always be made slowly. Thyroid hormone is very potent, and even tiny changes can make big differences. Your levels look fine and a 1.46 FT4 isn't too high. It's about where you want to be. And as you know, TSH is often misleading since it's falsely decreased in Graves' disease. Best, Elaine

» Elaine Moore - Graves' Disease and Side Effects

In response to Graves' Disease and Side Effects posted by princesssoft:

Hi,
It sounds like your dose of carbimazole is too high and is causing hypothyroidism. Common symptoms of hypothyroidism include joint pain, depression, mental fog, hearing loss or rather a slowness in recognizing verbal commands, constipation, weight gain, etc. As in hyperthyroidism, most people have a few predominant symptoms rather than all the symptoms.

Sounds like your range for T4 is around 12-24 although this could be an FT4 or a T3/FT3 level. The ranges are different in the U.S. except for TSH, which is the same worldwide. The usual starting dose is 10-30 mg daily.
The problem is that some doctors look at the TSH level and don't realize that it can take a very long time to rise. If your doctor is looking at your TSH level or measuring T4 instead of FT4 your results can be misleading. Both T4 and T3 levels are falsely increased in women because of estrogens. If you happen to be on oral contraceptives, T4 and T3 are easily 1.5 times higher than usual as these tests measure thyroid hormone that's linked to protein molecules. Estrogens cause a rise in the levels of binding proteins, which falsely increases the result. Linked to protein, thyroid hormone is inactive. Ideally, you would be having FT4 and FT3 levels.
I'm mentioning this because it's the usual cause of people being overmedicated with carbimazole or other anti-thyroid drugs. And this is why symptoms are more important than thyroid hormone levels. Your dose of Inderal is also fairly high for a young person and could also be contributing to symptoms. Inderal is used to reduce cardiac symptoms like heart rate and blood pressure. Too high of a dose can cause your vital signs to fall too low. Also, propranolol mildly reduces thyroid hormone levels by reducing conversion of T4 into T3. On a high dose like you're on T4 could rise while T3/FT3 falls dramatically.
I'd see if your GP can help you. You don't have to be seen by an endocrinologist to manage Graves' disease.
And you don't want to be on high doses of meds that are causing new (iatrogenic--caused by medicines or treatment) symptoms. Your thyroid hormone levels were only moderately elevated to start and your goal is to be on the lowest dose of meds needed to reduce them. The full effects take 6 weeks and it seems you may have had levels tested before you had a chance to see the effects of one dose.
Read some of my articles on dietary and lifestyle changes that can help you too as these will help you reduce the amount of meds you need to keep your levels within range. Best, Elaine

» Elaine Moore - Avoiding Iodine

In response to Avoiding Iodine posted by nurseheatherone:

Hi Heather,
Your levels are pretty normal although you wouldn't want them to fall much lower. They'll probably rise a bit and stay up during the first half of pregnancy. By mid-pregnancy they can start to fall so it's good to have your labs tested every 4-6 weeks. Hope you're feeling great and enjoying your pregnancy. Best, Elaine

» Elaine Moore - re: low TSH

In response to re: low TSH posted by fivebreaths:

Hi,
TSH can be totally misleading. This is because both stimulating and blocking TSH receptor antibodies can lower TSH. Stimulating antibodies (TSI) cause hyperthryoidism and blocking ones cause hypothyroidism. Many people with GD have both stimulating and blocking antibodies. When stimulating ones predominate, we're hyperthyroid. When blocking antibodies predominate we move into hypothyroidism. It's this autoimmune effect rather than burning out that causes about 20 percent of people with Graves' disease to spontaneously move into hypothyroidism.

Anyway, people with about equal amounts of stimulating and blocking antibodies will have normal thyroid hormone levels since the blocking antibodies prevent the stimulating antibodies from reacting with the thyroid cell receptor. But the antibodies are recognized by the pituitary gland as if they're TSH. (discovered in 2003 when Brokken learned that there are TSH receptors in the pituitary--I think you found this article last time we were discussing this on the board). Recognizing these antibodies as if they were TSH, the pituitary thinks our blood levels of TSH are fine. So the pituitary slows down on TSH production.

A low TSH on its own doesn't do anything but keep your thyroid gland from producing too much thyroid hormone (normally, TSH stimulates thyroid cells to grow and produce more hormone). But because in most people TSH reflects your thyroid status with a low TSH seen in hyperthyroidism, this result is misleading. Many, but not all doctors, realize that a low TSH in people with Graves' disease doesn't necessarily mean hyperthyroidism. The ATA had an article on this in 2004 after the Brokken article came out.

In your case, a very low ATD dose would help your immune system heal and reduce thyroid antibody production. But it could also cause your levels to fall too low for your body's needs, causing symptoms of hypothyroidism. To avoid this, some doctors will use block and replace therapy (adding thyroid replacement hormone to the ATD). In your case, this would work and with this protocol the ATD is eventually stopped and people stay on a low dose of thyroid replacement hormone to slow the gland down, which stops thyroid antibody production. Best, Elaine

» Elaine Moore - Discussions for Me

In response to re: low TSH posted by daisyelaine:

To ensure a faster response, please send discussions in which you would like a response from me to the spa topic. Spa services are an important feature in any autoimmune disease healing plan. Thank you.

» princesssoft - Graves' Disease and Side Effects

In response to Graves' Disease and Side Effects posted by daisyelaine:

Thank you, Elaine

I saw my GP and he agrees that the dose of Carbimazole was too high and causing hypothyroidism. He thinks the specialist was looking at a set of blood test results from before the dose was increased the first time and that's why she increased my dose. Either way, he has reduced my dose to 10mg and the symptoms subsided within 48 hours. Also, yes I was taking oral contraceptives, I've stopped taking them for now to see if that makes a difference to the next set of blood test results.

Thank you so much for the information, it really helped.

-- posted by princesssoft