Recently diagnosed - and I have some questions...

[Tasker]

Hi all,

I was diagnosed with hypothyroidism last month, and have now been on 25mcg of levothyroxine for nearly five weeks. I've already found this forum hugely helpful in terms of understanding the condition and knowing what else I can do to help care for myself. But I have a few questions and would be grateful for advice.

First of all, here are my blood test results:

Serum TSH level 6.89mi/L [0.27-4.2]

Serum free T4 level 11.1 pmol/L [12.0-22.0]

Thyroid peroxidase antibody level 220 U/ml [>34 U/mL = positive]

Serum vitamin B12 503pg/mL [197.0-771.0]

Serum ferritin level 22ng/mL [13-150ng/mL]

Serum folate level 7.1ng/mL [3.9-26.8]

Serum 25-Hydroxy vitamin D3 level 58.4nmol/L [50-75nmol/L is adequate, > 75 is optimal]

I am taking one ferrous sulphate tablet a day, 200mg; 2 x selenium 220mcg; vitamin C 500mg; Vitamin B complex which includes B12 2.5 mcg, folic acid 200mcg.

I have already changed to taking my levo at night (two hours after food) as taking it in the morning meant the fog was lasting until early afternoon and I couldn't stand that. I am feeling much better taking it at night. My energy is still low, and variable, and also my mood; I still don't feel as strong as I used to and I am forgetful and struggle to concentrate. Weight gain, hair loss, etc - but on the positive side I feel much less cold than I did! My carpal tunnel syndrome hasn't really improved yet.

So, my questions:

- are there any other supplements I should be taking to help myself?

- my GP has said that they won't repeat the bloods for three months - he suggested that was actually the local policy not just his decision and that if I went earlier the hospital wouldn't do them. That seems longer than the 6-8 weeks others speak of; has anyone else encountered this three month wait?

- once my levo (eventually) gets up to the right level, will my carpal tunnel symptoms resolve, or should I seek a separate referral for treatment for that? I see an osteopath which helps, but the pain gets very severe at times.

I think that's enough questions for now... thanks for your help!

[jimh111]

Often carpal tunnel resolves when hypothyroidism is sorted, so I'd hold off on that for at least a few months, especially as the only treatment I know of is surgery.

Waiting three months for a blood test just after diagnosis is against guidelines, I suspect your GP is misreading the local rules. I would go back and ask for an increase in your medication, that 25 mcg is a dose for the elderly and your GP can monitor your signs and symptoms until the next blood test is available (which will probably suddenly become available). Point out that you still have symptoms and your fT4 was very low, you have autoimmune hypothyroidism which will progressively worsen so it doesn't make sense to dither. In a non-elderly person without cardiac problems it is reasonable to start them off on 100 mcg levothroxine, although most doctors will start on 50 mcg.

I wouldn't take selenium supplements, or certainly cut back a lot, we don't need high doses of selenium. I wouldn't bother with more supplements other than vitamin D through the winter months.

The blood test results you gave, were these from when you were diagnosed or now that you are on 25 mcg?

[Tasker in reply to jimh111]

Thanks for your advice.

The blood tests were from when I was diagnosed, before starting treatment. At present the doctor says they won't repeat them until the start of December, but I will go back and challenge that.

[jimh111 in reply to Tasker]

In which case your TSH is rather low for an fT4 of 11.1, in most patients it would be much higher. I would ask you doctor to increase your levothyroxine for now and at the next blood test insist on TSH, fT3 and fT4 being tested or a referral to an endocrinologist because your pituitary seems to be underperforming. This can often happen if you have a period of over-activity some time ago which you may not have noticed. The problem is it tends to lead to low fT3 levels, hence the reason why they should test it.

You could give your GP a copy of the NICE Guidelines cks.nice.org.uk/hypothyroid... . Note the comment 'Review the person every 3–4 weeks after initiation of LT4'.

[SlowDragon Administrator]

Seriously consider changing to gluten free diet to see if this helps too

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

[Tasker]

Thank you all for your replies.

I will go back to the doctor and push for an earlier re-test of bloods, or failing that, for them to increase my levo dose anyway on the basis that my symptoms are not yet fully resolved.

I'm interested in the suggestion that my pituitary gland may be causing, or adding to, my hypothyroidism. I had assumed that the high antibodies pointed to Hashimoto's disease as the cause; is the pituitary part of that problem or is it a different cause of hypothyroidism? Can the pituitary problem itself be treated, or is the treatment still going to be levothyroxine?

I had been taking ferrous sulphate as I was prescribed that many years ago when I had iron-deficiency anaemia, but if ferrous fumerate is more effective I'll switch to that instead, and will up the vitamin C too - and try to develop a taste for liver!

I thought selenium helped thyroid function which was why I had started taking that, but if it doesn't, I'll stop - I've no wish to take supplements I don't need.

I will wait and see how the carpal tunnel goes, and will also look into going gluten free (gulp - that will be hard! But worth it if it helps.)

Thanks again, and if anyone can shed any more light on the pituitary issue, that would be v helpful.