Endo thinks I haven't been taking my medication - Thyroid UK

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Endo thinks I haven't been taking my medication


Hi I am new and diagnosed hypothyroid 4 years ago, my endo has been saying he doesn't think I've been taking my medication. I take 150mcg Levothyroxine and my symptoms are still hypothyroid ones. Why would he say this when I know that I have been taking my medication and leaving it a few hours before/after supplements? Thanks in advance

TSH 7.2 (0.2 - 4.2)

FREE T4 13.8 (12 - 22)

FREE T3 3.4 (3.1 - 6.8)

TPO ANTIBODY 704.5 (<34)

18 Replies

Because your results are so bad. Your TSH is far too high for someone on thyroid hormone replacement, and your Frees are very low. And, as they know so little about thyroid, they blame the patient, rather than trying to find out why your results are so bad.

So, firstly, do you take your levo on an empty stomach, with a large glass of water, and leave at least one hour before eating, tea, coffee?

What supplements are you taking?

Are you taking any other medication?

Have you had your nutrients tested - vit D, vit B12, folate, ferritin?

Do you have any digestion/gut problems?

Dinahj in reply to greygoose

I take levothyroxine on an empty stomach with a large glass of water and leave 2 hours after tea and eating and coffee and I take no supplements or medications and I have digestion and gut problems thanks

greygoose in reply to Dinahj

OK, so you have an absorption problem. You really ought to see a gastroenterologist to get this investigated. And you absolutely should get your nutrients tested because they are going to be low, causing more problems.

Dinahj in reply to greygoose

Thanks I had vitamins and minerals tested 3 months ago and GP has agreed to check me for coeliac

greygoose in reply to Dinahj

OK, so would you like to post your results, for comment?

Coeliac tests are notoriously unreliable. As you have high antibodies, it might be a good idea to try a gluten-free diet, no matter what the results. :)

Dinahj in reply to greygoose

Ok will do this on another post

greygoose in reply to Dinahj

OK :)

TPO antibodies 704 = Hashimoto's disease, your body is attacking your thyroid. Your symptoms will be very up and down. I went on a gluten free diet and that made a big difference. Later I also went dairy free and that helped some more.

With Hashi's you will very likely have low vitamin and iron levels. You need to find out what your levels are for Ferritin, iron, folate Vit B12 and Vit D.

You can do private finger prick tests and also include TSH, T4 and T3 levels through medichecks or Blue Horizon. Do the test first thing in morning and fasting except for water. Do not take your levo for 24 hours befoe test.

Post your results on here. We usually need to be near the top of the ranges to feel good! Seaside Susie on here is a mine of info re vitamin levels.


Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease). About 90% of all hypothyroidism in Uk is due to Hashimoto's

With Hashimoto's, until it's under control, our gut can be badly affected. Low stomach acid can lead to poor absorption of vitamins. Low vitamin levels stop thyroid hormones working.

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

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 significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

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

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







Low stomach acid can be an issue

Lots of posts on here about how to improve with Apple cider vinegar or Betaine HCL




Other things to help heal gut lining

Bone broth


Dinahj in reply to SlowDragon

Thanks Slowdragon, GP is testing me for coeliac because of low vitamins and minerals and poor absorption and why thyroid levels aren't going down.

SlowDragonAdministrator in reply to Dinahj

Regardless of the endoscopy results you will need to try strictly gluten free diet for at least 3-6 months. Strongly suspect you will find it essential (it's much easier than it sounds!)

Improving your dire vitamins, being strictly gluten free and helping gut heal will all help.

Bone broth is good

But you need Levo dose high enough to get TSH right down too.

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the article by emailing louise.roberts@thyroiduk.org print it and highlight question 6 to show your doctor.

Once you get TSH right down and FT4 right at top of range, FT3 may remain too low. With Hashimoto's our conversion can be poor because a lot of conversion should happen in the gut and gut doesn't work properly. Catch 22

May need addition of small dose of T3, but not before do all other things first

Good daily probiotic. Fermented foods like kefir etc etc

The gut is key

Great film


vocalEK in reply to SlowDragon

Here's a link to an abstract of a study where euthyroid state was restored in Hashi patients via supplementation with myo-inositol and selenium. I clicked the link to see the full text, because I wanted to know how they determined "euthyroid state." I was pleased to see that they included a reduction in subjective symptomatology. (I'd venture to guess that for us victims (ooops, I mean patients) that a reduction in our symptoms is ALL we are concerned about. Who gives a big whoop about lab tests unless they contribute to more effective treatment? Not always the case. Sadly, more like rarely the case.)


full text PDF: europeanreview.org/wp/wp-co...


You may have some malabsorption as 150mcg is quite a high dose to have TSH so high. Ask your GP to test tissue transglutaminase (tTg) to rule out coeliac disease which is the most common cause of malabsorption.

Dinahj in reply to Clutter

Thanks Clutter, GP has agreed to test me for coeliac disease

Clutter in reply to Dinahj


In the meantime, Levothyroxine dose needs increasing to raise FT4 and FT3 and reduce TSH.

If you have coeliac disease and adopt gluten-free diet Levothyroxine dose will probably need reducing as absorption improves.

SlowDragonAdministrator in reply to Dinahj

Regardless of tests results, even if get negative result for coeliac, very many of us find gluten free diet essential

Push to get endoscopy date as soon as possible

Make sure you eat loads of gluten containg foods before you are tested. The test won’t work if you go GF first. Then I’d do what the others say and go completely gluten free anyway.


All interesting.

I have Coeliac disease, been diagnosed over 40 years. The history is longer than that too. I've actually been diagnosed twice which might sound bonkers. But many years ago when I was a baby (I'm 62 now) there were no tests at all for Coeliac and the doctors went by symptoms alone. My father took me on lots of visits to our GP (was just one family doctor then) and they despaired of knowing what was wrong.

In desperation, my father took me to Great Ormond Street hospital and asked to see a doctor there. I was seen by Dr Wilfred Sheldon who was at that time doctor to the Queen's children. He took me on his lap and I was promptly sick on him! He was not bothered in the least and told my father he could see what a poorly child I was. From symptoms they recommended going gluten free and this was much more tricky in those days. But also at that time Coeliac was assumed to be a childhood illness which you 'grew out of'. Of course this is not the case now, diagnosis is for life. But when I was about 6 or 7 'normal' food was reintroduced. My childhood years were not very happy ones as I was often unwell (can see why now of course!) and my teenage years were quite turbulent too. In my late teens early 20s I noticed quite prominent stomach symptoms after some foods and this was at the time when lots of 'foreign' foods were becoming very popular, such as spaghetti. So eventually I took myself off to the doctor and they agreed to do a blood test. The blood test was in it's infancy in those days and notorious for inaccurate results and I would add that the blood test today can still show negative when you actually have Coeliac disease. My blood test then was negative, but because my medical history showed the issues I'd had when I was small, I was sent for an intestinal biopsy. The tubes used then were much bigger than they are now, so it wasn't a very pleasant experience!

But the diagnosis was conclusive, presence of Coeliac disease clearly detected in the gut. This is the only definitive test for Coeliac disease.

Also Fruitandnutcase is quite correct. It's no good going gluten free then going for tests as some gut healing will have taken place and Coeliac may not show up. You need to be eating gluten for 6 weeks before any test.

Just my take on that side of things.

In later life around 9 years ago I was diagnosed with hypothyroidism. I found out for myself I have hashimotos from private blood tests. Levothyroxine did not work for me very well at all and I eventually switched to NDT in October 16 via a private doctor.

I wouldn't say everything's fine, but I'm much improved from where I was.

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