Help with direction

I've been suffering for over 6 years with extreme tiredness, tingling hands, dry skin, IBS, night terrors plus more. Approx 3 years ago I was diagnosed with B12 deficiency and have been on injections every two months. Was advised that I had depression and even tried Sertraline / CBT for a couple of years but no improvement.

Dec 2015 my symptoms got worse and I started to get irregular periods. Quite a few blood tests later and April 2016 GP referred me to endocrinologist as consistent T4 'slightly low' and TSH 'normal', antibodies negative. I had a scan that showed polycystic ovaries.

I started taking 50mgs Levothyroxine in May and my symptoms dramatically improved - energetic, no IBS, sleeping well and even my eyebrow grew back!

My first endocrine hospital appointment was in Oct and the consultant ordered an MRI and blood tests, he said there was scope to up my thyroxine.

In Oct / Nov effect started to wear off and now really struggling with day to day life, feeling worse than before.

I had my second endocrine appointment today and had a new doctor, I explained my situ and that my symptoms had all gone but come back. MRI & bloods came back clear apart from EBV positive. Not a very good appointment, doctor does not think thyroid related and was told to look into Chronic Fatigue and ME.

My blood test results from last week are:

- TSH: 0.85

- Free T4 : 14

Based on this, doctor did not want to up my thyroxine at all, but managed to get up to 75mg per day. She talked about osteoporosis and heart attacks. I asked for a T3 test and got a lecture on T3 prescriptions not really working. I've also been booked in for an advanced cortisol test.

The lab flagged other results - corrected calcium level 2.1, mean MCV 102.4, MCHC 312 - but the doctor said that was normal.

Looking for advice on what to do next, should I give up on this being my thyroid or be considering other things?

Felt like I'd finally started to get somewhere but now back at square one :( :( :(

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3 Replies

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  • Melanie170,

    TSH 0.85 is normal and FT4 seems low but without the FT4 ref range I can't say for sure. I suspect FT4 14 is low which makes it likely your FT3 is low too. My advice is to order your own thyroid test to check FT3. thyroiduk.org.uk/tuk/testin... It's a pity your endo couldn't test FT3 without jumping to conclusions that you want a T3 prescription. She's wrong by the way, T3 works very well for those who need it. She's wrong to imply increasing your dose to 75mcg will cause osteoporosis and heart attacks. If she really thought that was true she wouldn't have increased your dose.

    If the lab has flagged some results they are NOT normal. Whether they are a matter of concern to your doctor is something else. Again, there is no lab ref range so I can't tell whether your results are below or above range but I suspect calcium 2.1 is below range which may have an impact on bone health.

    If there is no improvement on 75mcg after a couple of months it would be worth ordering a private thyroid test and perhaps ferritin, and vitamin D too. I assume you have B12 and folate tested periodically as you are having injections.

  • Thanks for quick reply - more detail of results below.

    TSH 0.85 (0.30-5.50 mlU/L)

    FT4 14 (9.00-25.00 pmol/L)

    Corrected Serum Calcium 2.1 (2.15-2.60 mmol/L)

    MCV 102.4 (77-95.00 fL)

    MCHC 312 (320-370.00 g/L)

    Vitamin D 60 (50-150.00 nmol/L)

    Serum Ferritin 64 (20-200.00 ug/L)

    Serum B12 401 (180-1100 ng/L)

    I will make sure to get T3 and speak to my GP about the other results.

  • Melanie170,

    FT4 is quite low in range so there is plenty of scope to increase Levothyroxine dose to improve it.

    I think low calcium should be followed up in 3-4 weeks. If it remains low your GP should prescribe a calcium supplement.

    Vit D is optimal around 100. I would supplement 5,000iu D3 daily for 2 months and then reduce to 5,000iu alternate days and retest in June.

    Ferritin is optimal halfway through range so you might want to supplement iron with 1,000mcg vitamin C which will aid absorption and minimise constipation.

    VitD and iron should be taken 4 hours away from Levothyroxine.

    labtestsonline.org/understa... will explain the high and low MCHC and MCV evaluations.

    B12 401 is unlikely to be deficient.

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