Should I trial levothyroxine/NDT? (Years of odd results but new to this!)

[Lutra88]

Hi everyone,

I was diagnosed with M.E./CFS in 2009, after my GP ran basic blood tests. Unfortunately I don't have a copy of those results, but I do have results going back to 2013 (I've had tests several times due to worsening/new symptoms). The only thing that repeatedly comes back abnormal is my TSH. In the latest results (last month), this was 4.9 (0.2-4.5), and my free T4 was 13 (9-21). These results are much the same as they were in 2013. I have had slightly better TSH results on two occasions since, but only once below 3, and I didn't know to fast at that point.

The GP adopted a wait and retest approach, and since the results didn't get worse, they didn't offer me medication. I was told that we should wait for TSH>10 and/or T4 out of range. In the meantime, my fatigue has worsened to the point where I've had to give up my part-time job. Other symptoms dating back to the ME/CFS diagnosis include brain fog, muscle pain, sore throat, and (since 2010) IBS. Over the past couple of years the symptoms have worsened and new ones have emerged, including dry/brittle hair, hair loss, skin problems (acne, which has improved with zinc/diet changes, and itching/dry skin on legs), some irregularity in periods/heavier periods, and loss of libido.

For a while I attributed some of the new stuff to coming of the pill, and waited it out, but it's been two years now. Also, the hair and skin issues started before I stopped taking the pill. I was investigated for PCOS but my ultrasound and androgens were normal, and the irregularity is fairly minor (LH was slightly elevated though). I had regular light periods and no PMS before going on the pill, so I expected to have reverted to this by now.

I have had free and total T3 tested once, and both were at the bottom end of the normal range. T4 is consistently in the lower half of the normal range too. I'm wondering whether most, if not all, of the symptoms fit hypothyroidism? Also had antibodies tested once and they were fine, apparently. My ferritin, B12 etc. were all ok in last round of tests. I don't have any issues with weight gain, despite healthy appetite.

I'm going back to the doctor armed with NICE guidelines on subclinical hypothyroidism, but I wanted to find out whether I should trial levothyroxine/NDT myself if they refuse treatment again? Could anyone PM me with a possible source for either, if so? (Nervous that the international pharmacies I've found will be scams!).

Sorry this is long, and thanks in advance for any help

[SlowDragon Administrator]

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies.

Plus extremely important to test vitamin D, folate, ferritin and B12. These often need to be optimal, not just in range

Essential to test thyroid antibodies, FT3 and FT4, plus vitamins to get whole picture

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 plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. 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. This gives highest TSH and most consistent results. (Patient to patient tip, GP will be unaware)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances too, especially gluten. So it's important to get antibodies tested.

If antibodies are high then getting coeliac testing recommended before trying strictly gluten free diet

With high antibodies it is recommended to treat with Levothyroxine with a TSH as high as yours

[Lutra88 in reply to SlowDragon]

Thanks very much for your informative reply. I did the Medichecks thyroid tests last year and antibodies were low, but I'll do them again with vitamins before treatment, just in case that's changed. I've been gluten free for extended periods of time to see if it made a difference to my health generally, but can't say I noticed much difference. I started eating it again last year in order to have a coeliac test, which was negative. I didn't realise the odds of hypothyroidism without Hashimoto's were so low, thanks!

[SlowDragon Administrator in reply to Lutra88]

You can apparently have Hashimoto's without high antibodies, just to complicate matters

thyroidpharmacist.com/artic...

Have you ever had thyroid scan? Can confirm Hashimoto's or abnormally small thyroid

[Lutra88 in reply to SlowDragon]

Wow, interesting, thanks! No, I've never had a scan, it's always been a wait-and-see approach (and then a do-nothing approach because the results haven't yet progressed beyond subclinical hypothyroidism). Interesting about the LDN, I'd been considering that for ME/CFS before I started to wonder if that's a misdiagnosis anyway...

[Jazzw]

You should know that a negative Coeliac test doesn’t mean that you don’t have gluten sensitivity. Just thought I’d throw that in there...

I would push to (a) get an FT3 result and (b) have your Vit B12 levels tested. I’d lay money on both numbers being either below range or very low in their ranges.

[Lutra88 in reply to Jazzw]

Thanks! Managed to find the last results I have for those, and B12 was 382 (180-2000) and FT3 3.5 (3.1-6.8), so looks like you're right I'm not vegetarian now though, so hoping B12 might have gone up. I'll get the whole lot retested if affordable!

[SlowDragon Administrator in reply to Lutra88]

Both are far too low

B12 should be at least over 500.

FT3 over 5.

Vitamin D needs to be around 100nmol

Folate and B12 at higher end of range

Ferritin at least half way in range

Heavy periods are classic sign of being hypothyroid and also tend to lower ferritin

Gluten is a big and hidden issue for many many people

[Lutra88 in reply to SlowDragon]

Thanks, have ordered Medichecks tests