Help understanding latest blood test

Hormones
1

I have just got the results from my latest blood test and am totally gobsmacked! I have been feeling really well and comfortably energetic with no symptoms of being hyper, yet my result suggests a rather different story. My results are:

TSH 0.01(0.35 - 3.50)

T4 23.6 (7.8 - 17.0)

T3 6.3 (3.4 - 6.0)

My last results 3 months ago were:

TSH 0.12

T4 13.0

T3 3.8

I just cannot understand my results do not seem to match how I feel. I only requested a blood test because I felt so well in myself and was expecting my TSH to have risen. Three months ago I did not feel half as well as I do now but those results suggested I was almost spotty dog perfect.

Last July, when I was first diagnosed, I was really unwell, and even then my TSH was slightly higher at 0.02, so I really do not understand why it should be so low now when I have no hyper symptoms at all.

Has anyone else experienced this or are able to explain why this should be please. I have not been able to speak to my doctor yet.

2

My TSH is the same as yours. 0.01 my range is 0.4 - 4.0. I've only had 3 blood tests and each time it's been the same. My other results have come down and my GP said I was ok and to reduce my carbimazole to 5mg daily and I've to get bloods done again middle of April. It wasn't til I came home that I realised my TSH hadn't altered so how can I be in normal range as she said. Someone mentioned on another site that it takes longer for TSH to go up to within normal range. I feel okish I think!

3

Hi Screwball121

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

4

Ignore the blood tests, if they were a part of your diagnosis and care they might be useful but in the UK they are the be all and end all so go by HOW YOU FEEL!! It is not your doctors body, its yours! You know what works for you and if you are not having Hyper symptoms then do NOT let your docotr reduce your meds, simply do not agree with him/her. My endo prescribes for me and he is desperate to reduce my meds because they cost more than levo but I always say, 'No thank you I am fine on the level I am on'.

5

Hi All ad thank you for your comments. I actually reduced my own meds at around Christmas time because I started to feel somewhat hypo instead but since I reduced one of the carbimazole and l-carnitine I have felt absolutely fantastic. I was actually expecting my TSH to have risen because of the l-carnitine and my current well being, so I was a bit shocked to see that it had dropped so much.

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

6

Hi 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.

7

Tracy,

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.

8

Hi Fern

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.

9

Hi Fern

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.

10

I did feel better when I took first the regular L-Carnitine and only noticed slight increase in TSH from less than 0.01 to 0.05. I felt so much better that I was able to decrease my Methimazole though. I took regular L-Carnitine and lots of it (up to 3,000 mg a day) until I could regularly obtain the Acetyl-L-carnitine. I really have to watch that dose because as I said, it skyrocketed my TSH.

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

11

Tracy, I don't blame you for being confused. I suppose I should have explained better.

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.

12

Linda,

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.

13

My psychiatrist's words about conversion on the cellular absorption level of T3 to T4 was borne out by many endos quoted in Mary Shoman's site as well. From a body feeling perspective, I did not like the way T4 made me feel but T3 felt normal. As a thyroid replacement, I would vote T3 any day over T4.

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

14

I agree about how it is better, even essential at times to take the LT3 instead of LT4, or a combination of both, but the normal thing is that the body will convert T4 to T3 and even if that doesn't happen or is inadequate for some reason, it never happens in reverse with T3 converting to T4. I also know that Mary Shoman sometimes says things that are not accepted as factual by endocrinologists.

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.

15

I'm no scientist so I can't tell you for a fact how any of these meds work in the body but I did believe my psychiatrist when he told me that about the conversion. Based on my taking both drugs separately and how I felt on them, I felt normal on T3 but not on T4. I did not feel good on T4 at all and wouldn't thank you for it. My cousin who had thyroid cancer and had her thyroid removed is not getting energy from T4 despite taking a higher than average dose. I can understand that. Her Endo made her decrease the dose and will not give her T3 because he says it acts quickly on the body and then goes. That was not my experience on T3. I did not feel jolts and then less energy but mind you I had an active thyroid with my own hormones at the time and no Graves.

I had to stop the T3 completely when I got diagnosed with Graves. I checked with the psychiatrist who prescribed it originally if any of his patients got Graves from taking it and he said not at all.

My thyroid antibodies are gone now and that happened with the addition of the L-carnitine.

16

Linda, how much T3 were you on when you got the Graves? and did you get to taper off, or did you have to stop it all at once?

I had the Graves' before I was diagnosed with any other thyroid problem. It was very difficult to get treated for the low free T3 and hypothyroid symptoms I had after going off the anti thyroid treatment. Now that I go to an Endocrinologist again, it is the same thing. I am told to get off the LT3, (as well as the LT4.)

I wanted the T3 because I knew it was fast acting, and fast leaving. I noticed it acting practically immediately when I started, but it may have been because I was very low to begin with. And even knowing it has a half-life of about 24 hours, my symptoms were not nearly so bad 48 hours after taking the first 1/2 pill as they were before I ever took any. (I liked it, and felt I needed it, but thought 2.5 mcg was overkill, so I let it go longer before taking another dose, which was 1/4 pill that time.)

I believe there are patients and conditions when the T4 is not well converted if at all, including myself and my sister, but I have never heard of T3 being converted to T4, and know that the T4 to T3 conversion is what is mostly talked about in the scientific literature I have read and what the doctors expect to have happen.

17

I was on 2.5 mcg but when I got my lab results showing elevated T3 and T4, I stopped it altogether.

18

Linda, I see. You are right, that would not be too big of a step down for most people.

Why were you on T4 and then T3 if you weren't hypothyroid after Graves'?

19

I was never on T3 or T4 AFTER I was diagnosed with Graves. I took a small dose of T3 for many years when I had a normal thyroid. It was given to me to boost the action of the antidepressant I was on. This particular antidepressant had horrible side effects if you took a therapeutic dose and by combining the T3 with a low dose of it, you got the desired effects without the side effects.

At one point when I was on it, my gynecologist suggested I take a T3/T4 combination or Synthroid. He may have tried both but I didn't take it for more than 1 or 2 days. When I did, my psychiatrist/psychopharmacologist told me "Tell him to call me", that T4 worsens depression and that T3 converts to T4 but not the other way around.

20

Ok, I guess I remember you told me that before. sorry.

I guess the side effect of the antidepressant was to lower the thyroid... ???