Too much thyroxine causing terrible stomach issues - Thyroid UK

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Too much thyroxine causing terrible stomach issues

Imi1 profile image
Imi1
9 Replies

Hi hoping for any fellow sufferers for some advice. I have an under active thyroid and have been taking for a long time now 200 of thyroxine a day. I have been having regular blood tests but the doctors never looked at my results. Last week the GP said that I should only be on 50 a day. The problem is I am experiencing terrible abdominal pains, swollen stomach and general IBD symptoms. The doctor did say that taking too much thyroxine can cause problems like this. Has anyone else experienced this. I had an endoscopy a few months ago and they diagnosed a hiatus hernia and also slow gut. Feeling so low at the moment 😢

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9 Replies
cjrsquared profile image
cjrsquared

It would be extremely unlikely that you would only need 50 mcg of levothyroxine having been on 200mcg. Doses are normally reduced in 25 mcg increments, hold at this dose for 6 weeks then repeat bloods before changing dose again. Do you have your actual results plus the ranges to post so others can comment. Just another thought, slow gut is an underactive symptom and overactive causes, or over medication causes fast gastric transit with loose stools and frequency.

Chickenlady2009 profile image
Chickenlady2009 in reply tocjrsquared

Agreed. How can doctor possibly tell what dose you need. Dosage is determined by changing up or down in 25 mcg increments.

greygoose profile image
greygoose

Your GP sounds like a dead loss! But, to help us help you, it would be better to post your results and ranges - we'll look at them, even if your doctor doesn't!

Sounds to me as if you probably don't convert very well, and are still hypo - i.e. low FT3. Which would probably mean you have low stomach acid, which is causing the problems. But, doctors don't understand low stomach acid, because the symptoms are the same as for high stomach acid. But, have a read of this article, and try the home test at the end:

healthygut.com/articles/3-t...

:)

jgelliss profile image
jgelliss in reply togreygoose

You have me in stiches GG with your sense of humor . It's Great to laugh.

If it wouldn't be so sad we would laugh harder. You can't make up these stories with our dismal treatments with some of the Dr's. You wonder many times where they got their license to practice .

silverfox7 profile image
silverfox7

Did your doctor say why you should only be on 50 mcg a day? Is that your regular GP or a new one? I’m just trying to work out what he is thinking as that is a huge drop! He may be thinking you need to start again and that would make some sort of sense but that’s not the way to do it. Looking at your previous results though could help with what to advise.

Also have you ever looked into maximising Vit D, B12, folate and ferritin? They help your thyroid to work better and that can also help conversion issues.

SlowDragon profile image
SlowDragonAdministrator

Never reduce dose of Levothyroxine by more than 25mcg at any one time

Highly unlikely GP is correct.

Before even considering changing your dose you need FULL Thyroid and vitamin testing

First thing is, do you have any actual blood test results? if not will need to get hold of copies.

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

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

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Add results and ranges if you have them

Ask GP to test vitamin levels if not been done

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood 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)

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

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

For thyroid including antibodies and vitamins

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

Cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

Gut issues are extremely common with hypothyroidism, especially with Hashimoto's - this suggests that your treatment is currently incorrect....likely poor vitamins and poor conversion of FT4 to FT3

Poor gut function can lead to 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

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

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...

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

restartmed.com/hashimotos-g...

Come back with new post once you get results and members can advise on next steps

Chickenlady2009 profile image
Chickenlady2009

My husband has a hiatus hernia and his symptoms are acid reflux and( upper) stomach pain. He does not have bloating in the gut or IBS. IBS is often caused by food sensitivities triggered by leaky gut, which is caused by low stomach acid. Low stomach acid also results in low vitamins and minerals.

I feel like you have two problems, a hernia and leaky gut. Google AIP and try that elimination diet to heal your tummy.

SlowDragon profile image
SlowDragonAdministrator

Looking at previous posts from 8 years ago ....vitamin deficiencies seem likely

Request GP tests vitamin D, folate, B12 and ferritin

Definitely poor gut function, meaning you have poor absorption of Levothyroxine

And/or dairy intolerance can be reason for needing high doses of Levothyroxine

If dairy intolerance is likely then lactose free Levothyroxine tablets (Teva brand) or liquid Levothyroxine may be better absorbed

You should request referral to endocrinologist.....do NOT agree to dose decrease in Levothyroxine before seeing an endocrinologist or BEFORE getting FULL Thyroid and vitamin testing

Email Dionne at Thyroid Uk for list of recommended thyroid specialist endocrinologists

thyroiduk.org.uk/tuk/About_...

Marz profile image
Marz

Any feedback from you after all the helpful Replies ? Does anything sound possible to help your progress ?

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