My mum is being ignored by her doctor, TSH 7.5 (0.5-4) and very poorly. What can I do?

As you may know, I self treat with NDT having been symptomatic of hypothyroidism for years and finally reaching a TSH of 5.4 (2.2-4.8) and FT4 of 10.4 (12.5-28.5). I'm feeling heaps better on 2.5 grains of NDT and my GP is accepting of my decision to self-treat rather than try a low dose of levo to get me back under 4.8 TSH.

My mum recently got back from a sunshine holiday, where after the flight, her legs and feet swelled up dramatically, causing great concern. She is 72, and sufferes from Parkinson's disease and Atrial Fibrilation, and so was sent for a series of blood tests to check her heart, kidney and liver, along with a full blood count. She too has been symptomatic of hypothyroidism for years, but some symptoms mimic those of Parkinson's and AF so it has always been hard to distinguish which causes what.

She phoned for the blood test results this morning and as told her TSH was 7.5 (0.5-4) and that she would need to come in for more tests in a month to see whether or not there was a problem with her thyroid. She has been certain that her thyroid has been a problem for the last 5 years, with very extreme symptoms of choking attacks, stiffness, intolerance to the heat and cold, fatigue and slow movement and slurred speech, non of which seem attributable to her medical conditions.

She is too afraid to self treat as I do, but clearly they aren't planning on treating her now, when her TSH is already 7.5. They haven't tested her antibodies either, so it seems pretty careless to take a wait and see approach with that reading. I'm not sure what I can do, or what I should advise her to say to her GP. Can anyone advise please?



5 Replies

  • Jigsawcat, Your mother's GP isn't ignoring her. It's standard practice to retest within 3 months in case elevated TSH is due to non-thyroidal illness or lab error. As 90% of hypothyroidism in the UK is caused by autoimmune thyroiditis (Hashimoto's) many doctors don't see the value in testing thyroid peroxidase antibodies (TPOab).

  • Sorry Clutter, I should have said that she's had a TSH of around 4-5 for 10 years or so but feeling much iller in the last 5 years, so it's not the first high reading, it's just the first over the 'magic' number. my GP offered me Levo the minute mine went over range, my mums is a different man from the same clinic, hence why it seems odd to me that he is taking a different approach x

  • Can your Mum see your GP? GPs do differ in their approaches which is why we often suggest people see another GP at their practice or change GP surgery.

  • I haven't got your mum's other medical condition, but can let you know that with TSH 8, felt awful, extreme fatigue, sudden energy slump, 14 hours of non energising sleep, intolerant to hot weather, but cold feet all the time, dizzy, brain fog, impaired memory. After 7 years of hypothyroidism, not diagnosed by GP, only discovered TSH 7.5, from 7 years ago, when got print out of blood tests to show private specialist, finally self-medicating with NDT after increasing B12, folate, iron, feritin, Vit D3 levels and followed: for how to start taking NDT. I was tested for TPO antibodies, but negative.

  • She has what the doctors would call, subclinical hypothyroidism, but of course she has symptoms so needs to be treated. When she has her next blood test, make sure she has it as early in the day as possible, say 8 - 8.30, or earlier if the lab is open earlier. This way, the TSH results hopefully show that she is Hypo.

    Has she had her B12 tested?

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