Levo absorption issues: I went to see my Endo... - Thyroid UK

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Levo absorption issues

bajmon profile image
9 Replies

I went to see my Endo over a week ago and he was surprised (as much as I am) to see that my TSH goes up despite higher dose of Levo. I'm awaiting results of tests taken last week plus some celiac test.I've attached several tsh results for your to see. The 0.18 can be ignored as I was put on 75mcg 6x and 100mcg 1x from 50/75 This was clearly too big rise

When I went back on 50/75 after that, it went back to TSH 1.69 which for me is usually when I feel the best and that's what my Endo would like to maintain (1.5ish)

But then I started to feel worse in June, GP did minimal test of only TSH and T4 and it shows TSH 2.08 This is when I went on 75mcg daily but it keeps going up and the last results are even worse. I don't have results from last Wednesday yet but they should be not any better. I have a feeling that last Covid might have something to do with this. I had it quite bad at the beginning of August. I had some really strange symptoms where I was absolutely starving for 3 days. It didn't matter what or how much I ate, I just kept feeling extremely hungry, dizzy, hollow stomach 15-30 minutes after a large meal. I read about this and there's a large number of people with the same symptom. It went away but I have not been well since. There's really no one to turn to about this as I don't think Endo will be interested to do specific tests or refer me anywhere although I will mention it to him. I only just put those two together now as my stomach is really unsettled still, it feels hollow, I feel nauseous often and there's a lot of gurgling going on, I'm hungry but have no appetite often but other times it's fine. Has anyone came across such issues? I went gluten-free for about 6 weeks and could see a difference in any bloating but that's when I noticed stomach issues returned. I am back in gluten now as had to have those tests done. I'll be talking to my Endo soon hopefully once the results are ready but he also suspects some absorption problems. Just to note, I take levo anytime I wake up early hours then I get back to sleep and have coffee (usually decaf) 30-60 min after our longer and no food either.

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9 Replies
Artless profile image
Artless

Hi bajmom.I am currently trying a gluten free diet and I did feel slightly better by the 8th week. I by chance spoke to a helpful doctor who had me do some poo samples it turns out I have helicobacter pylori and currently taking two weeks of meds. Its just a thought you may ask your doctor to check ( if he hasn't already) or you can get a test cheaply on line which looks a bit like a covid test but with poo. If its positive then go to doctors.

bajmon profile image
bajmon in reply to Artless

Thank you. That's very helpful. I'll try that. What did the dr say about your gluten-free diet?

Artless profile image
Artless in reply to bajmon

Didnt mention it to him. Only went on it because of reading about a leaky gut on this forum will continue for now but hoping once the infection has gone I can return to a normal diet. Good luck

bajmon profile image
bajmon in reply to Artless

Good luck to you too 👍

SlowDragon profile image
SlowDragonAdministrator

Just testing TSH and Ft4 is completely inadequate

Most recent results show you are under medicated and in need of dose increase in levothyroxine…..if sensitive to increase….try 100mcg and 75mcg on alternate days initially

Have you had thyroid antibodies tested previously

What vitamin supplements are you currently taking

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

 

which brand of levothyroxine are you currently taking

Approx how much do you weigh in kilo

75mcg is only one step up from starter dose

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies 

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. 

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis 

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended on here that all thyroid blood tests early morning, ideally just before 9am and last dose levothyroxine 24 hours before test 

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and thyroid antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Only do private testing early Monday or Tuesday morning. 

Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism 

thyroiduk.org/wp-content/up...

bajmon profile image
bajmon in reply to SlowDragon

Hi, we spoke before and I have my tests done correctly in the morning. Those I posted are only to show the flactuation in TSH. This is really what I'm inquiring about. I don't have autoimmune my thyroid issues are a result of covid at the very beginning of the pandemic. As a result I ended with severe Subacute Thyroiditis which has damaged my thyroid. This illness lasts 2 years which has just past but the damage has been done and thyroid is much smaller resulting in hypo. I had a full list of tests done last Wednesday privately by my Endo and awaiting for results. I'm terrible with supplementing city I'll get on this asap. Except of vit D and B12, what others do you recommend. But still I'm no wiser with the question I asked about absorption problems.

SlowDragon profile image
SlowDragonAdministrator in reply to bajmon

we need to see vitamin D,folate, B12 and ferritin results in order to comment on wether results are good, average or poor

I would retest both TPO and TG antibodies if not tested in last 2 years and/or ultrasound scan of thyroid

DippyDame profile image
DippyDame

I would suggest that until you have a full thyroid test ( to include TSH, FT4, FT3, vit D, vit B12, folate, ferritin and antibodies TPO and Tg) accurate evaluation of your thyroid function is impossible.

If medics cannot do this then many of us resort to private testing. The tests are accredited and therefore reliable

thyroiduk.org/help-and-supp...

TSH is not a accurate marker for treatment.....it was devised as a test for hypothyroidism only and is now wrongly considered the "gold standard" test. It is only part of the story!

TSH is a pituitary, not a thyroid, hormone, it reflects the overall level of thyroid hormones ( FT4 and FT3) in the blood....but it does not give the level of each hormone and therein lies the problem.

On 6/10 your FT4 lab of 14.3 is 36.19% through the ref range (10.5 -21) which is low, so resulting in a high TSH of 2.32.

High TSH generally indicates low/ insufficient hormone level

This suggests you are undermedicated and this is underlined by the high(ish) TSH ....when correctly medicated TSH should be close to 1

We aim to have both Frees sitting at around 75% through the ref range.....at 36.19%

You need to find the actual point within the ref range where you feel well and 14.3 is clearly not it. To do this you need to increase your levo dose

The 0.18 can be ignored as I was put on 75mcg 6x and 100mcg 1x from 50/75 This was clearly too big rise

Why do you think this is too big a rise? Instead of ignoring that TSH 0.18 it is partly a clue to your problem given that your FT4 has risen to a better level!

On the contrary it looks as if that increase raising FT4 to 17.3 (64.76% thro' ref range) was getting closer to the dose you require

I suspect a test would show your FT3 is too low and that you may have impaired T4 to T3 coversion.....result low FT3

Low cellular T3 = poor health

It looks as if you need more levo/ T4 not less.....this should raise your FT3

A full thyroid test will answer you problem

Re hunger... Your thyroid is an important organ in the body and is responsible for your metabolism and other important functions. One of the signs of an underactive thyroid can be hunger.

Further....it is vital that the essential nutrients, vit D, vit B12, folate and ferritin are optimal in order to support thyroid function. Has this endo tested them?

I don't think your endo fully understands what is going on and relying on TSH is not the answer

That answer can be found in a full thyroid test

bajmon profile image
bajmon in reply to DippyDame

Thank you. I had full tests done last Wednesday but him. I'm awaiting results. I don't have autoimmune, my thyroid problems are a result of Subacute Thyroiditis which was triggered by covid in 2020. As a result my thyroid is smaller and damaged. Usually it recoveres within 2 years but endo decided to put me in levo back then to help me as I was feeling extremely unwell. The change to 75mcg 6x and 100mcg 1x restored in TSH 0.18 which is below recommended. I felt so unwell then that i had to take time off work. Extreme palpitations, fatigue, mid swings ect.

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