Hello helpful peeps! I’m needing a bit of advice before seeing my GP again tomorrow. Sorry this is a long post!
Having been on Levo since August (50mcg, then up to 75mcg) I finally saw an Endo a few weeks ago. He told me that a blood test done in 2013 identified that I had Hashimotos - but I’d never been told this! I was told for ages I was ‘ borderline hypothyroid’ without any further explanation,
My GP prescribed Levo because my cholesterol was high - and it was me who asked for it to be checked.
I’ve also had pretty bad acid reflux for a few years which I was prescribed lanzipranzole for a few years ago. I only take it when needed but I’ve read that this can be a symptom of Hashimotos and also that Lanzipranzole is not good for thyroid.
I also get a very dry tongue and am generally still exhausted so haven’t felt much benefit from the Levo.
The endo wanted my cholesterols checked again and also B12. He didn’t want T3 checked as he said this is only done for hyperthyroid. (Oddly he asked if I wanted to come off Levo, which I wasn’t asking...)
My last thyroid bloods were considered ‘normal’ at
TSH 0.47 mU/L (0.35-5.00)
Free T4 15.0 pmol/L ( 9.0-21.0)
My cholesterol has come back at
Cholesterol 7.6 (was previously 8)
Triglycerides + 2.8 ( 0.2-2.3)
HDL 1.2
LDL 5.1
VLDL-Cholesterols 1.3
Cholesterol/hdl ratio 6.3
No result was given for B12.
I’m seeing my GP tomorrow to discuss all this. Any advice on what I should be asking or thoughts on all much appreciated.
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It's not that Lanzipranzole is bad for the thyroid, it's that it will impair your ability to absorb your thyroid hormone replacement (levo).
When you are hypo, you often develop low stomach acid. The problem is that the symptoms are exactly the same as high stomach acid. Doctors know nothing about low stomach acid, and just assume that you have high acid because of the symptoms, and prescribe Lanzipranzole, which lowers your stomach acid even more, causing poor absorption of nutrients and thyroid hormone. So, it is bad for hypos, rather than bad for the thyroid.
Having said that, PPIs are bad for everybody, long term. They can cause all sorts of complications and problems, and should only be taken as a short-term stop-gap whilst stomach problems are being investigated.
I imagine your endo is a diabetes specialist, isn't he? With scant knowledge of thyroid. He may only test FT3 for his hyper patients, but he is totally wrong in his believe that it is not equally useful for hypo patients. It is the most important number, because it is the active hormone. And, if it is still low, you will still have hypo symptoms. You cannot guess at the FT3 just from testing the TSH and FT4, you need to test the FT3 itself.
So, two things you need - although I don't know if your GP will be able to help you with either of them: you need to know if you have high or low stomach acid, and you need your FT3 tested - not just to know the level, but also to know how well you convert the levo (T4) you are taking.
If your GP won't even try to get FT3 tested, then it would be a very good idea to get it tested privately. But, no point in testing FT3 in isolation, you will also need to get the TSH and FT4 at the same time - they all need to be seen together to get the full story.
Also, have you ever had your antibodies tested? TPOab or TgAB?
For stomach acid, this article tells you all about testing - there's even a home test at the end. But, not much point in testing while you're taking PPIs because obviously your stomach acid will be low.
Just back from the GP - think I was asking too many questions so she’s referred me to the Endo again!
Got my B12 result though - 331 on a scale of 200-883,
She says this is normal.
My cholesterol has improved slightly but she didn’t know why it had been checked. I explained that it was a high reading which led her colleague to put me on Levo in the first place.
They can’t check low/high stomach acid but they’re going to check for helicobacter.
She says the lab checks for T3 if they think it’s appropriate ??
She says to increase my Levo to 100 (currently 75) but since she didn't seem to know much about Hashimotos (or me!) I don’t feel too confident. Should I do this?
When a doctor says 'normal', all they mean is it's 'in-range'. They don't know enough about it all to know that that isn't always good enough. It's where in the range your result falls, that counts, because the ranges are much too wide.
Your B12 is rather low. I had a lot of low B12 symptoms when mine was at that level. If I were you, I'd supplement that - especially if you have low B12 symptoms.
I didn't think they would do the stomach acid tests, because they're rather expensive, I believe. But, you could do the home test for yourself.
I'm afraid that she's right, in the UK the lab rules! A unique situation that you'll only find in the UK, where a lab technician that knows nothing about you, can over-rule a doctor's requests for tests. And, the weird thing is, doctors do not protest! If labs tried to do that here in France, the doctors would down tools and take to the streets in protest!
I think you should try the increase, yes. Your FT4 is only mid-range. Most hypos need it higher than that.
It's very, very rare to find a doctor that knows anything about Hashi's. But, in any case, the treatment is the same as for non-Hashi's hypo: thyroid hormone replacement. The problem is, finding the right dose.
Better in some way, worse in others. What you gain on the roundabouts, you lose on the swings, sort of thing. But, doctors are just as ignorant about thyroid here as anywhere else. What's more, it's far more difficult for us to get private tests. At least you have that advantage.
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 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?
Ask/insist on GP testing vitamin levels
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all 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
Medichecks currently have an offer on until end of May - 20% off
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH well under one) and FT4 in top third of range and FT3 at least half way in range. All four vitamins need to be optimal for good thyroid function
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. 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
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
If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.
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