Further help please.

[Simplesista]

Hi,

I’ve used this forum previously and really valued the advice given; it’s been very helpful. I’m not sure how to add links to my previous posts.

These are my latest blood results (done by the NHS so incomplete I know!)-

TSH 0.06 (0.2-4.0)

T4 18.1 (10.0-20.0)

B12 669ng/L (211.0-911.0)

Ferritin 27ug/L (10.0-322.0)

Folate 17.2ug (5.4-24.0)

Vitamin D 106nmol/L (75.0-250)

My antibodies are above 1300 and I am completely gluten free. However this hasn’t made any difference to my antibodies and they have stayed at that level in each test.

I take all the supplements recommended here and follow the excellent advice by Seaside Susie re eating chicken liver and my ferritin levels are going up slowly.

I am currently taking 62.5mcg of levothyroxine, reduced from 75mcg about 6 weeks ago. My main problem was weakness in my left arm and shoulder and this seems to have improved slightly with the reduction. However, the weak feeling does now spread to my legs, which I’m finding stressful and worrying.

My question is do I reduce my levothyroxine to 50mcg to see if this will help reduce my feeling of weakness? I know this is a low dose but I’m a very tiny person (5ft, 46kg), not sure if this makes a difference really.

Thank you for your help.

[greygoose]

I would say that before you do anything, you need to get your FT3 tested. When you reduce your levo, you also reduce your FT3, and if you're a poor converter, that's not something you can afford to do. It would be best to get your FT4 and FT3 tested privately at the same time, so that you can see how well you convert.

[Simplesista in reply to greygoose]

Thank you grey goose. Could you please recommend which private tests I should have as I get quite confused by the many available!

Also I’m not quite sure what being a poor converter means so I would appreciate an explanation of that, if you could. Thank you very much.

[greygoose in reply to Simplesista]

Levo is T4, which is a storage hormone. It has to be converted to T3 before it does anything. That is done by removing one of the four iodine atoms on the T4 molecule. T3 is the active thyroid hormone needed by every single cell in your body. It's low T3 that causes hypo symptoms.

Not everybody converts very well, so we need to check it. Private testing is not something I've ever done, because I've always managed to get it done by my doctor, here in France, although I know it's next to impossible in the UK. But, Ideally, you would want to test

TSH

FT4

FT3

TPO antibodies

Tg antibodies

vit D

vit B12

folate

ferritin

to get a full thyroid status picture. You will find details of private testing here :

thyroiduk.org/tuk/testing/p...

[Simplesista in reply to greygoose]

Thank you, you’re a star. I’m going to France next month, I’ll wave in your direction;I’m sure you’ll sense the weak armed wave of a hypo girl wherever in France you maybe-😆!

[greygoose in reply to Simplesista]

lol I'll wave back!

[SlowDragon Administrator in reply to Simplesista]

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid or Blue Horizon are the most popular choice.

Suggest you just get TSH, FT4 and FT3 tested

DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. If on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

[Simplesista in reply to SlowDragon]

Thank you, I have ordered the thyroid check plus test from medichecks. I always follow the advice above prior to blood tests.

I’m wondering if I’m over medicated and displaying signs of hyperthyroidism? The reduction from 75mcg to 62.5 has improved my symptoms somewhat and I’m quite tempted to try 50mcg.

[SlowDragon Administrator in reply to Simplesista]

Only do blood test after 6 weeks minimum on constant dose

[Simplesista in reply to SlowDragon]

The above results are from a blood test done after 6weeks on 62.5mcg levothyroxine, I’m thinking of reducing based on the results above. Thank you.

[SlowDragon Administrator in reply to Simplesista]

Well your ferritin is still much too low and will not be helping

I would run test now to see if FT3 is already too low.

You are now on very small dose of Levothyroxine. Most need somewhere between 100mcg and 200mcg, though I note you say you're tiny

Presumably you supplement vitamin D?

Do you also supplement magnesium? Gluten free diet is notoriously low in magnesium and with thyroid problems we are often low in magnesium

[Simplesista in reply to SlowDragon]

Hi, yes I supplement magnesium and vitamin d.

I have ordered the medicheck tests to check FT3. Do you think I should carry on taking 62.5 until the results of those tests come through?

[SlowDragon Administrator in reply to Simplesista]

Yes - you can do test on Monday, you will have results by Wednesday most likely

[Simplesista in reply to SlowDragon]

I will do. I appreciate you taking the time to respond, thank you very much.