Help understanding latest blood test

Once I started on L-Carnitine and my TSH rose from less than 0.01, it has been all over the map, depending on whether I take acetyl-L-carnitine or not and whether I take my daily dose of 5 mg of Methimazole and I have to say that no matter where my results are now, I do not feel any different. For instance a couple of wweeks ago, my TSH was in the 1.4 range and today it is 2.4 and I feel no different. My T3 and T4 are always within the normal range, sometimes at the lower end of it and sometimes in the middle of the range but always within range. It's just the TSH that varies depending on what I do, so I am not too worried about it.

I don't remember, was it you who said you have both Graves and Hashimoto's? That may be a factor.

Linda

Linda - I only have Graves and not Hashimotos (as far as I am aware). I have managed to speak to my doctor today who says he will refer me to an Endo. I was actually a bit surprised he did not do this sooner, but anyway, he is going to do it now, so that it is fine. He did say that the Endo will probably try and push for me to have RAI but he knows that that is a big NO NO with me. I know from looking at the Thyroid UK site that destroying your thyroid and having to take thyroxine for the rest of your life is not quite as simple as they would lead you to believe. I would just be swapping one set of issues with another.

I also agree with glynisrose, that we do know how we feel, and not the doctors, despite what the test results might say. I know I am feeling well at the moment and nobody could convince me otherwise. I am currently trying to source acetyl-carnitine which Holland and Barratt were supposed to be getting for me last week. I thought, having read some of Linda's other posts, may help lift my TSH a little bit, so it might be worth a try.

Is that true though that carbimazole costs more than levo? Is that why doctors are so keen to give you RAI and swap you on to levo!

Tracy

I don't know if Carbimazole costs more than levo but I don't think that's why docs promote RAI more. It is just that at one time, that was the only way they knew how to treat the effects of hyperthyroidism and they felt that the alternative was better than hyperthyroidism. Because docs are so indoctrinated and "follow the herd" it is difficult to teach them new things. My doc mentioned RAI and surgery AFTER all my thyroid results were normal. Go figure.

I am in the US where they typically treat with Methimazole (generic for Tapazole) instead of Carbimazole, which I believe converts to the same drug in the body. But actually they are just as RAI and surgery happy here as in the UK. Generic is cheaper than name brand.

For hypothyroidism Levothyroxine (LT4) is trusted more than Cytomel (Liothyronine, or LT3) because Levothyroxine is supposed to be converted to T3 in the body, but LT3 is fast acting and fast diminishing and that is a little too scary for responsible doctors to want to leave in the hands of patients. I don't think the price is an issue except for what I said before with generics being cheaper.

I think they really don't want to deal with thyroid problems and if they know for sure you are hypothyroid they think they can just check your doses once a year and be done with it. They don't concern themselves much with your symptoms anyway. I think that is because they really can't tell from the symptoms if you are hypo, hyper, or have some other unrelated condition.

I feel like having adequate thyroid hormones circulating in the bloodstream is one of the essential factors for general health. More basic than that is adequate Carnitine. Since emphasizing carnitine in my diet and taking 500 mg Acetyl-l-carnitine twice daily, I feel better able to cope with hypothyroid symptoms.

April 1st I am scheduled for my next thyroid blood test, so I just have to see if what I am doing affects it. I have also been taken off my 25 mcg levothyroxine and had to reduce my liothyronine from 7.5 mcg to 2.5 mcg since my last blood test.

My thyroid test last November showed my TSH at 0.009 which was the first time in 2-3 years it has been below range, and neither my free T4 nor my free or total T3 have been above the range in the same amount of time. So after last November's results, I reduced my LT4 from 50 mcg to 25 and LT3 from 7.5 mcg to 6.75 mcg.

Still, I was referred to my 4th Endo and saw him at the end of January when I had another blood test showing my TSH had improved to about 0.18, I think, and my free T4 and total T3 still in range.

A year ago last December, (2012) I was able to go off the methimazole but my FT3 went off the bottom of the range, then hoovered around the low end of the range until I was treated with the LT3.

I really believe it would be easier to manage the thyroid myself if I were prescribed the levothyroxine and liothyronine necessary to do it. I think my 0.009 TSH in November was a fluke caused by having increased the LT3 by a quarter tablet (1.25 mcg) less than a week before the labs. That was the mistake I made, when I should have realized I needed to stay on the same dose for at least 4 weeks before having the lab work done.

I was on a low dose of T3 from 1993 to 2007 with no change in the normal values of my thyroid tests. I was not given it for thyroid but rather to enhance the antidepressant I was on (Tofranil) as it helps it work better at a lower dose and avoids side effects. One of my gynecologists tried to give me a combination T3/T4 pill and my psychiatrist (a psychopharmacologist) told me to tell him to call him because he said T3 converts to T4 in the body but not the other way around. He should know, he studied the pharmacology of drugs and their effects on the body.

Then in 2007 when I developed Graves I stopped the T3. Perhaps my lowering the dose before I stopped it contributed to my getting Graves, I don't know. For the brief couple of weeks or so that I tried the T3/T4, I hated the way T4 made me feel. I felt normal on the T3, faster pulse and heart rate but still quite comfortable and had lots of energy. I would not want to have to take synthetic T4 and I think that's why most people with no thyroid never feel good on it. So I would imagine people who have both Hashi's and Graves could get by merely on T3.

I just spoke to my Endo. Told him my lab tests are all well within the normal range, I feel fine and I would like to try to decrease my 5 mg daily Tapazole dose which he told me I could try to do. Cutting it to half is difficult though because it is a small little sucker of a pill and half is almost nothing, lol.

Sorry, I am a little confused, why would you need to take levo if you are hyperthyroid? Wouldn't that make you hypo instead?

Yes I think Methimazole acts in exactly the way as carbimazole, so there should be no difference. I am sure if one was better than the other, both the US and the UK would adopt the same drug. I just prefer to stay on carbimazole and keep my thyroid intact unless something changes and I have little choice than opt for one of the more drastic options.

I desperately want to try the acetyl Carnitine, but am struggling to get hold of it. I am taking l-Carnitine which, I believe is making a huge difference to how I feel. Even the brain fog has diminished, but it does not seem to be bringing up my TSH, though Linda did say that the L-Carnitine did not really increase hers much either, yet mine has gone lower. My doctor did say that my antibodies have come right down but I forgot to ask him the figure. Hopefully I will see the Endo fairly soon and maybe get a better idea of what is going on. The main thing is that I feel really well and will take that as a good sign and not worry too much about the results.

I just spoke to my Endo and he has agreed that I can cut my Methimazole down to 2.5 mg a day with a view to discontinuing it altogether. I will have to get tested again after I have been doing that for about 2 weeks and see what the values are then.

Linda

In a certain amount of cases people become hypothyroid after treatment for Graves' disease (GD). I have also had the two types of antibodies: both for GD and for Hashimoto's Thyroiditis (HT.) My understanding is that the GD antibodies can stop being produced and the patient will go into remission, but even if the HT antibodies decrease, the effect of destruction of the thyroid is permanent, so the hypothyroidism is permanent unless the GD antibodies return making you hyper again.

Really the endocrinologists #2, #3, and #4 are/were all opposed to treating the hypothyroidism (or not calling it that) but between #3 and #4, I began treatment by my Primary Care Physician who viewed my situation as "not the textbook case" ... then my TSH dropped to zero-ish and I was sent to Endo #4.

I'm sorry, but I seriously question that your psychiatrist / psychopharmacologist actually knows what he's talking about. The endocrinologists are quite clear that they usually expect the Levothyroxine (LT4) to be converted to T3 so there is no need to give a patient the LT3. Also, I read about the deiodinases that convert the T4 to T3 or reverse T3 by subtracting one of the iodine molecules from the T4. [I'm less sure about the reverse T3, but I know that it comes from a different deiodinase which works against the regular T3 so you won't expend too much energy in times of crisis like during a famine...

I know how difficult it is to cut the small LT3 pill even smaller, and think they should really make smaller size doses. Maybe it depends on the source of the generic version but mine is small and fat. I cut it one way in a pill splitter, turn it around and cut it again to get quarters, then if I want eighths I just do my best with a knife, turning each fat quarter on its side and splitting it that way.

Also, many patients who initially were given T4, then a T3/T4 combination preferred the latter.

On the other hand, I admit to having ideas that are contrary to what endocrinologists accept, also. I believe that treatment with LT3, in very small incremental doses, can and will help the Graves' antibodies to relax, thus causing the TSH to go up instead of down. That is my experience.