Intolerance to thyroxine ? : Hi there, I have... - Thyroid UK

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Intolerance to thyroxine ?

Hannah5273 profile image
6 Replies

Hi there, I have Hashimoto and have been taking Levothyroxine/eutirox for 5 months. My issue is that I keep having to lower my dose of thyroxine because it causes the onset of diabetes symptoms (excessive thirst, hunger, polyuria, weight loss, night sweats) however my TSH level remains high and my t3/t4 in normal range. My diabetes tests keep coming back negative however I do have antibodies against the pancreas.

Each time I lower my dose of thyroxine the diabetes symptoms disappear for a few weeks, and then I become intolerant to the lower dose and need to lower it yet again. So I’m continually lowering the dose because my body cannot seem to tolerate it, and all the time still experiencing the symptoms of Hashimoto because I am not taking enough thyroxine.

Any suggestions would be very much appreciated. I have seen 3 endocrinologists and one of them is very kindly researching this for me however no solutions so far.

Thank you.

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Judithdalston profile image
Judithdalston

I have diabetes, hypothyroidism, Hashimoto’s, fibromyalgia....and find they are inter-linked. In trying to control / maintain them I find that the diabetes is easier to monitor ( with instant blood sugar test) and ‘control’, but it’s the hypothyroidism, particularly the Hashi, that is more difficult. If your endo can’t find diabetes, or pre diabetes, could you be misinterpreting your symptoms as diabetic...when they are more to do with Hashi and hypothyroidism? Ie what if you get your TSH down to about 1 or under, by increasing the levo. , and experiment with gluten free ( even dairy free) to also limit your thyroid autoimmune antibodies to reduce Hashi flares. It sounds like as you raise your levo. you then reduce it again, as you say you ‘are intolerant to the lower dose’, how about trying to increase it instead?

Hannah5273 profile image
Hannah5273 in reply toJudithdalston

Thank you very much for your reply. It is an interesting idea and I will look into this. I’ve never actually increased the dose, I’m continuously decreasing. My blood sugar is out of normal range when I’m experiencing the bad reaction and then returns to normal when I decrease the dose, it’s very strange!

I’m trying gluten free and lots of supplements.

Thanks again!

Judithdalston profile image
Judithdalston in reply toHannah5273

I happen to have read some other very old posts about blood sugar and hypo. and the link between the two: how there appears to be a vicious circle between insulin intolerance and poorly ‘medicated’ hypo ie one wrong puts other out. But the dr. can easily check blood sugar , either longer term , say last 6 weeks, with HBa1C test, or immediately with blood sugar monitor, or fasting morning test where you consume a sweet drink and blood tested some time 1-2 hours later. You didn’t mention your folate, ferritin, b12 and vit D results....it is certainly a priority to get these up to optimal levels, at upper end of ranges, for good thyroid health...so this could be a good priority ( see below you have them tested...you got the results and not just an ‘ok’ from surgery?)

Hannah5273 profile image
Hannah5273 in reply toJudithdalston

Thanks very much for bringing this to my attention - I’ve checked back at the results and they were all only just in the normal Range. I’ve been talking supplements for 3 months now so hopefully these are helping to bring all the levels up.

SlowDragon profile image
SlowDragonAdministrator

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Do you have any recent blood test results and ranges to add?

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Vitamins need to be optimal, not just at bottom of range

Night sweats can be low B12

bmj.com/content/349/bmj.g52...

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

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

Ideally ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

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

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

restartmed.com/hashimotos-g...

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

personally I found incessant thirst diminished as vitamins improved and once strictly gluten free

Addition of small dose T3 may be necessary too once TSH is around one and FT4 towards top of range

Vitamins need to be optimal FIRST

Perhaps look at DNA testing

thyroiduk.org.uk/tuk/testin...

bluehorizonmedicals.co.uk/t...

Hannah5273 profile image
Hannah5273 in reply toSlowDragon

Thank you very much for your reply. My vitamin levels have actually been fine and I’m also taking supplements and not eating gluten. The only other bloods out of range were low folic acid (which is now ok following supplements), low prolactin, and high ADH.

Thanks again for your suggestions, I will look into all of this.

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