Increased symptoms on Thiroyd : I had recently... - Thyroid UK

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Increased symptoms on Thiroyd

Manjiajk profile image
31 Replies

I had recently started taking Thiroyd that was ordered online from Thailand, but in the five weeks of taking it, my TSH went from 35 to 76- has anyone else experienced anything like this? I did wonder if it was a dud batch! Thanks.

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Manjiajk profile image
Manjiajk
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31 Replies

What were you taking before and what were your results (with ranges) for TSH, free t4 and free T3?

Manjiajk profile image
Manjiajk in reply toAngel_of_the_North

Thanks for responding. I wasn’t on anything previously. My my TSH was originally 35 with a range of 0.35-5.5; my free T4 was 14.1 and range 12-22 and free T3 was 4.81 and the range was 3.1 to 6.8. My free T3 and T4 pretty much stayed the same but TSH rose to 76 on thiroyd.

Angel_of_the_North profile image
Angel_of_the_North in reply toManjiajk

So how come you weren't prescribed thyroxine when you were obviously so hypo?

How much NDT are you taking?

Are you taking any B vitamins?

Have you ever been tested for a TSH-producing adenoma?

It's just that your TSH seems very high compared to your thyroid hormones. How do you feel?

Manjiajk profile image
Manjiajk in reply toAngel_of_the_North

I had been prescribed levothyroxine but didn’t get on with it so stopped taking it, hence ordering NDT.

I’ve stopped the thiroyd NDT as it clearly wasn’t working. I had been taking two grains.

I take vit B complex, vit D, iron, calcium, magnesium and zinc. I felt dreadful.

I’ve had to go back on levothyroxine and have been back on it for three weeks, with bloods being due in another three weeks.

Manjiajk profile image
Manjiajk in reply toManjiajk

I have Hashimoto’s. I haven’t been tested for TSH adeneoma.

greygoose profile image
greygoose in reply toManjiajk

You started Thiroyd on 2 grains? Or did you work up to it slowly? How long have you been taking 2 grains?

Manjiajk profile image
Manjiajk in reply togreygoose

I started on one and then increased to two after 1.5 after two weeks then two grains after four weeks.

greygoose profile image
greygoose in reply toManjiajk

You increased a bit too fast. Normally, one starts on 1/4 grain, and increases by 1/4 grain every two weeks. It's best to pause at 1 grain and hold for six weeks, then retest to make sure you're not taking too much.

However, if you don't feel over-medicated, that's fine. I would think that high TSH is some kind of a blip. Do you take anything containing biotin? If so, did you stop it a week before the blood draw?

Or, it could be something called TSH antibodies, which arise sometimes, in some labs, and cause the TSH to rise sharply like that. But, it's a false result. It has nothing to do with your thyroid hormone replacement. The best thing to check it is if you can have it retested in a different lab. Seems like the most likely cause, because those Free results do not reflect such a high TSH.

Manjiajk profile image
Manjiajk in reply togreygoose

I’ve had a high TSH and normal T3 and T4 for quite a while; I’ve tried to sort it out naturally, but to no avail. I had to start taking thyroxine as it was just climbing. I didn’t feel any benefits taking thyroid. It was near its use by date so it did wonder if had lost its potency.

greygoose profile image
greygoose in reply toManjiajk

Thyroid hormones keep their potency for a long, long time after their use by date. Until a couple of weeks ago, I was taking T3 that was 2 years past it's use by date. I didn't notice any difference when I changed to the fresher stuff.

So, you've always had a disproportionately high TSH. Have you always had your blood tests done in the same lab? If not, then one has to look at the possibility of a pituitary problem. But, if you've changed from one type of thyroid hormone replacement to another, and it's still the same, then I doubt it has anything to do with the hormone you're taking - that seemed highly unlikely, anyway.

In any case, there should be some coherence between your TSH and your Frees. If there never has been, then your doctor should be doing more testing, to find out the problem. What has he said about your TSH?

Manjiajk profile image
Manjiajk in reply togreygoose

I’ve had tests done in a private lab as well and they showed the same thing. My doctor has said I need to take thyroxine as my thyroid is struggling. I’m seeing an endocrinologist in June, so maybe I’ll have more luck then.

greygoose profile image
greygoose in reply toManjiajk

Yes, and I agree with him, BUT that TSH is just not normal. It shouldn't be that high with the levels of FT4/3 that you have. It's too high in comparison. Therefore there's a problem somewhere that needs investigation. To have a TSH that high, your thyroid would actually be dead, not just struggling. :)

Manjiajk profile image
Manjiajk in reply togreygoose

It Is odd!

greygoose profile image
greygoose in reply toManjiajk

Indeed.

Angel_of_the_North profile image
Angel_of_the_North in reply toManjiajk

Your B complex probably contains biotin and may have affected the test results. I would get another test after taking NDT for 6 weeks as your actual thyroid hormones look reasonable for someone on NDT and stop taking the B vitamins at least 4 days before the test. It looks as though it was working.

jacrjacr profile image
jacrjacr in reply toManjiajk

did you take your meds 4 hours away from any vitamin or calcium or a 30 minutes away from food and caffeine

Manjiajk profile image
Manjiajk in reply tojacrjacr

Hi, it’s taken away from iron and calcium etc. My TSH has now risen to 105, so no idea what’s going on.

Manjiajk profile image
Manjiajk in reply toAngel_of_the_North

I have Hashimoto’s. I haven’t been tested for TSH adeneoma.

Angel_of_the_North profile image
Angel_of_the_North in reply toManjiajk

I think you need to be tested for pituitary problems as TSH is way out of sync with your thyroid hormones - see if you can get a referral to an endo who is not just a diabetes specialist

Manjiajk profile image
Manjiajk in reply toAngel_of_the_North

I’m seeing an endo in June. I’ve never had out of sync T3 or T4, it’s alwats been an out of range TSH. I do have hypo symptoms though such as hair loss, fatigue etc.

Angel_of_the_North profile image
Angel_of_the_North in reply toManjiajk

You are still a bit undermedicated with those results, but TSH is just not in sync with them at all. You expect underage thyroid hormones with that TSH or a TSH of about 1-2 with those thyroid hormones. You really need to see an endo. Hair loss and fatigue can also be caused by low iron and/or low B12 and folate. There is also something called thyroid hormone resistance which I know next to nothing about which means that you need very high levels of thyroid hormones in order to be healthy

Manjiajk profile image
Manjiajk in reply toAngel_of_the_North

B12, folate and iron are all normal. I’m seeing an endo in June so fingers crossed, they’ll know what’s going on.

jacrjacr profile image
jacrjacr in reply toManjiajk

keep us posted..i have a friend like that

Manjiajk profile image
Manjiajk in reply tojacrjacr

What happens with your friend? I’m at a loss. I’ve been on levothyroxine now for six weeks and my TSH is climbing, just like it did with thiroyd.

jacrjacr profile image
jacrjacr in reply toManjiajk

So u are not rsking biotin theweek of test right....

My frien d chose not to take thyroid meds snd to get as vitamins and thyroid support supplements instead and fine

This depends

DO YOU GAVE HIGH ANTIBODIES BEC THAT CHANGES EVERYTHING

WHICH MAY BE YOUR PROBLEM?

jacrjacr profile image
jacrjacr in reply tojacrjacr

But my friend only gad a tsh under 10 over 5..so not drastic

Manjiajk profile image
Manjiajk in reply tojacrjacr

Hi, yes, I have high antiperidoxase antibodies.

humanbean profile image
humanbean

helvella I can never remember the details, but aren't there some antibodies which can cause test machines to show an artificially high TSH result?

Manjiajk profile image
Manjiajk in reply tohumanbean

This is via blood tests. I’m definitely hypo as I have all of the symptoms and am progressively worsening, so I don’t think the blood test results are artificially high.

humanbean profile image
humanbean in reply toManjiajk

I'm not suggesting that you are not hypothyroid. I'm suggesting that your TSH result has been distorted by other factors. I had results for Free T4 and Free T3 which were worse than yours but my TSH didn't even reach 6. I've seen other people on the forum with Free T4 and Free T3 better than mine with a higher TSH of around 10 or 15 or 25 or whatever.

Now, I realise that we could both have problems - I'm not producing enough TSH and you are producing too much. I have a possible explanation for my problem - a damaged pituitary. But you don't have an explanation for yours. And I think that there are antibodies of some kind (I can't remember which ones) that can distort the result - it is an artefact of testing, not a true result - the test gets confused and measures your TSH + these antibodies that I can't remember the name of and gives a high result. In that case you would have to find out how the tests were done that gave you the high result then find a lab which tested in a different way. But sadly I can't remember ANY of the details.

I was hoping helvella would reply but maybe he hasn't been on the forum to see he's been tagged.

I wonder if diogenes can sort out my confusion?

Manjiajk profile image
Manjiajk in reply tohumanbean

Hi, I saw the endocrinologist today and he said it’s not unusual for the TSH to be so high when the thyroid is on it’s way out and because I’m under-medicated, so my meds dose has been doubled.

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