Advice before I see doc needed: I am on 125mcg... - Thyroid UK

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Advice before I see doc needed


I am on 125mcg thyroxine. Have got my last blood results - TSH 0.56 (0.35-5.5), T4 (12.7 (7-17), B12 382 (150-900), ferritin 99 (15-300), ranges in brackets. I see doc next week to review them. I feel awful, crushing fatigue, pins and needles, mouth ulcers, muscle pain, the list goes on. I already take iron and that's keeping the ferritin level at 99, I know that can improve but don't know what else to do, I already have an excellent diet. Lab says B12 ok but seek further advice if suggestive features present, which they do. Any advice for when I see doc, how can I improve how I feel?

8 Replies

Apart from your B12, those results aren't bad - as far as they go. But, if you still have bad symptoms, then you probably aren't converting your T4 to T3 very well, and your FT3 will be low. You really need an FT3 test to know where you are. Unfortunately, doctors know nothing about T3. :(


For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

you need vitamin D and folate tested

Your B12 is below 500. It's common with hypothyroidism, especially if you have raised antibodies (Hashimoto's) to need B12 and folate towards top of range

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

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. When on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Is this how you did the test?

Essential to know if you have Hashimoto's by testing both TPO and TG thyroid antibodies, plus testing FT3 to see how well you are converting

Low vitamin levels are extremely common with Hashimoto's

Thank you. I already know I have hashimotos, doc wouldn't test them again because he said they just help with initial diagnosis. Folate was 13.6 (>3ug/L). Doc didn't test Vit D so will be ordering private tests. I also suspect I'm not converting well.

SlowDragonAdministrator in reply to magsywu

So as you have Hashimoto's are you on strictly gluten free diet?

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first

Literally thousands on here find strictly gluten free diet helps enormously or is absolutely essential

You also need folate and vitamin D tested

The pins and needles are suggestive of low B12. The best form of B12 to take is Methylcobalamin, not Cyanocobalamin. You can't overdose on B12 so it's worth getting a reasonably high dose supplement (1000mcg or so), or if you suspect you are not absorbing it well, you can get a spray or sublingual tablets.

I suspect you may have a conversion issue further exacerbated by low b12. The PA forum could help you there especially as you have some neuropathic symptoms.

"Hashimoto’s is, at it’s root, a disease of inflammation. And research has found that the inflammatory immune cells (cytokines) and proteins like IL-1, Il-6, C-reactive protein (CRP), and TNF-alpha will significantly decrease D1 activity and reduce tissue T3 levels. Any person with an inflammatory condition – Hashimoto’s – will have a decreased T4 to T3 conversion in the body and a relative tissue hypothyroidism.

These immune proteins will, however, increase the activity of D2 and suppress the TSH despite reduced peripheral T3 levels; again, making a normal TSH an unreliable indicator of normal tissue thyroid levels."

taken from

magsywu in reply to HLAB35

Thank you for the link, it was really helpful. I felt well last year and thought I had it all under control, but my employers moved me to a location a long way from my home, 90 mile round trip, and I suspect the stress of that has triggered the deterioration I have suffered since then. It's knowing where to start or what would be of most benefit. Is it diet, conversion, deficiencies, adrenal fatigue? Have got to the stage where I'm basically not fit enough to work but I have to, I'm the major wage earner and we have a mortgage to pay.

HLAB35 in reply to magsywu

Starting on adrenals is not a bad idea.. Think I did everything backwards though!

Elimination diet can cause detox reactions which can make Fatigue worse for a short while. Taking Magnesium can help conversion, help adrenals, is analgesic and works with B Vits to prevent nerve damage and reduce inflammation - so possibly a good place to start. Reading Carolyn Dean's book on Magnesium has helped with my energy issues. Also Dr Isabella Wentz and Dr Sarah Myhill are very useful resources..

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