Hugely varying TSH: I was diagnosed hypothyroid... - Thyroid UK

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Hugely varying TSH

Kacey12 profile image
4 Replies

I was diagnosed hypothyroid 11 years ago and have Hashimoto's. I recently saw a different GP at my practice who seems very open to looking outside the box a little, and during the consultation she brought up on the computer screen a list of all the blood tests I'd had in this time, which I've had printed out. (I had never, until my latest blood test, ever actually got a printout - never even thought about it till coming on this website!). I am due to go back soon, after another blood test - which will include T3 and TPO antibodies along with folate etc (at her suggestion).

Before going back, I would just like to know what people think of the way my TSH has varied in that time and the reason for it.

On diagnosis, it was 5.61 with free T4 14.38 (12-20)

Since then, it has ranged from:

0.067 with free t4 of 19.16 to

7.21(!)with free T4 of 12.21

but usually around 2 on average. Looking back, when it was 7.21 is probably the time my levo was put up from 50mcg to 75, but then, a few years later, after a blood test, I was asked to alternate 50 and 75, which I was on ever since. Again, looking back at the list, I think this was when the TSH was 0.224 and free T4 16.55.

In the last couple of months, I have put my own dose back to 75mcg which has helped me to lose some weight. I will be looking to increase this further, depending on the outcome of the next blood test, which will also test free T3. It was only in my last test that that this was ever done (at my request) and it was 4.50 (3.8-6.8), therefore only 23% through range. It will be interesting to see whether the slight increase in levo will have made any difference, and indeed the TSH and other results!

Would like to go back to her fully informed!

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Kacey12
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4 Replies
SlowDragon profile image
SlowDragonAdministrator

About 90% of all primary hypothyroidism in Uk is due to Hashimoto's

Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges. Post results when you have them, members can advise

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels. Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

This gluten intolerance is slowly becoming more recognised by medics

Ideally ask GP for coeliac blood test first, to rule it out, before trying strictly gluten free

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

Come back with new post once you get results and ranges

75mcg is still a low dose of Levothyroxine

TSH should be around one and FT4 towards top of range and FT3 at least half way in range. All four vitamins optimal, not just within range

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

NICE guidelines saying how to initiate and increase. Note that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine

cks.nice.org.uk/hypothyroid...

Kacey12 profile image
Kacey12 in reply to SlowDragon

Thank you for your prompt and comprehensive reply. I have started going gluten free which might have helped too. I am curious to see what my new results will be, and will let you know.

MaisieGray profile image
MaisieGray

Your thyroid function tests results will have no doubted reflected your autoimmune condition as it waxes and wains slightly over time. Another factor might be if you were swapping makes of Levo in that time, which resulted in returning differing results. I can't see any valid reason why your meds should have been reduced when your FT4 was only 16.55 (12 - 20), but I'm guessing it was due to your GP wrongly dosing by TSH. Your GP may ask, but the lab won't necessarily test FT3 if your TSH and FT4 are in range. Once you've tested positive for your AI condition, there's not much benefit for the GP to re-test, as they don't treat it, only the resultant hypothyroidism

Kacey12 profile image
Kacey12 in reply to MaisieGray

Thank you for your interesting reply, and I had in fact wondered myself if the varying TSH was due to the Hashimoto's. I also agree (knowing what I now do thanks to this site!) that my levo should never have been reduced.

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