Question on behalf of my mum. she’s had a thyroid issue for 50 years, and constantly battles the doctors as looks in range for bloods when in fact has all the typical underactive thyroid. Has been taking 100 mg / 125 mg alternate days Levothyroxine for many years.
She’s recently had a flare of symptoms which doctor has screened for many different things, but TPO antibodies are showing high (not got results personally as yet) but GP claims they are high because she’s over medicated and needs to drop to 75mg.
Considering she’s always feeling underactive, is understandably worried about dropping, is this the correct advice from the GP.
All advice welcome, thanks in advance,
Kate
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Kate261
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Does your Mum supplement low vitamin levels caused by low stomach acid from being hypo?
I'd recommend she gets ferritin, folate, B12 & D3 tested. Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost.thyroiduk.org/testing/priva...
There is also a new company offering walk in (includes free blood draw) & mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
We really need to seea c opy of these results to comment further other than obviously high antibodies happen quite naturally and have nothing at all to do with how much Levo you take.
What time of day is she getting blood tests done? 9am or earlier is recommended for highest TSH result. On the day of test, fast and only drink water, take Levo after the blood draw that day.
Thanks so much for getting back to me. She’s in the process of asking for the results to be sent over to her so will post when she gets them.
She’s had all those levels tested I believe and the gp today has said ‘normal’ but to be honest, he also told her she was diabetic and then said ‘oh sorry I’ve read that wrong’ so we aren’t full of too much hope that he’s on the ball.
She’s physically and mentally exhausted, and does have ME too, but after 40 odd years of understanding her body, she knows when it’s thyroid vs ME.
But I am right in thinking that the TPO antibodies being high bears no relation to the level of thyroxine you take?
If you're in England I'd recommend getting the NHS app then asking permission to see results on that at GP reception.
But I am right in thinking that the TPO antibodies being high bears no relation to the level of thyroxine you take?
You are correct. TPO antibodies vary from day to day, week to week etc regardless of anything including what dose of Levo you are on. GP is talking out of his/her hat.
Start a new post when you have the vitamin results. Likely as not she has low/deficient vitamin levels which are very common in hypothyroidism. We need OPTIMAL vitamin levels for our thyroid hormone to work well.
Has she had a full thyroid panel done at all? Would likely need to be done privately. Would be interesting to see where her FT3 is if she has CFS.
Thank you, she is awaiting the permissions for the NHS app.
This is what I thought, this constant confusion by GP’s is so dangerous! Thank you for the clarification. She’s at a loss as she’s constantly dismissed and just told ‘your overdosing on thyroxine’ but without any alternative suggestions.
I will suggest the private testing and share a new post when we have the results. Thank you so much.
Yes thyroid antibodies are not affected by your dose level and they don't cause symptoms.Once they have been tested as high you know that you have autoimmune thyroid disease also called hashimotos. Thereafter there is little to be gained by testing them as levels fluctuate anyway.
With autoimmune thyroid the immune system attacks the thyroid. This damages the thyroid and the damage causes extra thyroid hormones to be released. Antibodies are there to clean up the debris left by the attack.
Tell her to look at her results when she gets them. Explain that the numbers in brackets after your result are where your result should be but add that it's no good just being in range - you need to be at the right place for you within the range. Like shoes. A normal size range for shoes could be 3 to 8. You wouldn't wear a size 5 shoe if your feet were a size 7. It's the same for thyroid hormones. The level has to be a perfect fit for you.
No there's a lot of trial and error.Generally we look to tsh being around 1 with ft4 somewhere over 50% through range. Ft3 normally sits a few percentage lower through its range. So you are looking for not much difference between ft4 and ft3 percentage wise.
If there is a large disparity then you begin to question conversion t4 to t3.
For example my TSH was low, my ft4 result was 60% and my ft3 17%. These results showed that my body was not converting efficiently.
TPO antibodies are showing high (not got results personally as yet) but GP claims they are high because she’s over medicated and needs to drop to 75mg.
That’s absolutely rubbish
High thyroid antibodies show cause of her hypothyroidism is autoimmune thyroid disease (hashimoto’s)
NEVER agree to dose reduction UNLESS Ft3 is over range
NHS rarely tests more than TSH (and Ft4 if you’re lucky)
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
Does she always get same brand levothyroxine at each prescription
For full Thyroid evaluation she needs TSH, FT4 and FT3 tested
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
What vitamin supplements is your mum taking
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test 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
Testing options and includes money off codes for private testing
Thank you for coming back to me. Yes it’s a confusing message isn’t it, he said if she keeps taking a higher dose she’ll ‘destroy her thyroid’. At 75 she has a good grip on what is right for her.
She’s gluten free, dairy free to a certain extent and eats really well.
She takes vitamin d3 and b12, she’s on HRT and Sertraline which no one ever considers at the GP. She’s seen an endriconologist who told her ‘something is obviously not right but I can’t see it’s thyroid’ and fobbed her off to wait for repeat bloods in 6months and be referred to a ME clinic which is unlikely to ever happen.
What I am reading is that she should get her own thyroid panel and vitamin levels done and then challenge the GP? If they won’t administer the correct dose of Levothyroxine, does she have any recourse? How would she know if she’s got an absorption issue?
he said if she keeps taking a higher dose she’ll ‘destroy her thyroid’.
She won’t “destroy “ it. But it will reduce/stop making thyroid hormones
Once any patient starts taking replacement thyroid hormone the feedback mechanism means almost everyone will end up on full replacement dose
Levothyroxine doesn’t top up thyroid output, it replaces it
guidelines on dose levothyroxine by weight
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
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