Thyroid UK

Experiencing symptoms despite being within range

Hello everyone, I'm new here - due to the presence of a nodule (follicular neoplasm, 2cm, turned out to be benign) I had half my thyroid removed in September last year. Op went well, recovery was uneventful, felt more or less fine for the first few months. I moved to Germany in March this year, went to the doctor in May feeling tired, they did blood tests, and since my T4 was slightly below range (7.82 in a range of 8.90-17.6) they put me on 50mg levothyroxine tablets which also contain iodine (Henning Thyranojod 50). I do not have Hashimoto's, it just appears that what's left of my thyroid isn't keeping up with demand.

Since May I have felt progressively worse. I am constantly exhausted, have muscle aches, shortness of breath, and my hearing seems to be getting worse. It is a very physical tiredness - I am exhausted and my muscles feel heavy, and it is starting to get me down. I got tested again in July and results were as follows:

Ferritin = 20.1 (range: 13.0 - 150)

B12 = 221 (range: 211 - 911)

TSH = 0.85 (range: 0.55 - 4.80)

FT4 = 9.49 (range: 8.90 - 17.6)

The doctor told me to keep waiting and that I would start feeling better, so I gave it a few months but last weekend I found a bald patch on my scalp (about the size of a 10p coin) so I made another appointment and saw a different doctor today. She told me that my thyroid levels are optimal - she didn't appear to agree with me being on levo in the first place - and that there is no thyroid-related reason for me to feel bad. She said that my B12 is low, so I should just take some vitamins and that's that. She was pretty dismissive and didn't really seem to take my symptoms into account - she just focused on the blood work and basically implied my symptoms were psychosomatic.

My question(s):

Should I push to get my FT3 tested, or is the doctor right in saying that the current levels are optimal? Is there any possibility that my symptoms are thyroid related despite these results?

Re. B12 - I do not eat red meat, but I do eat fish, eggs, and dairy products regularly, so it seems odd that my B12 levels are so low. The doctor told me to take supplements and was reluctant to investigate this further - is it possible this isn't dietary related?

Grateful for any help or advice you can offer!

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All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH and most consistent results

Was your test done under these conditions, your FT4 is pretty low

You probably need dose increase

Your ferritin and B12 are too low.

You also need to test folate and vitamin D.

Low stomach acid due to being hypo reduces gut function causing reduced absorption, lowering vitamins

Lots of posts on here about how to improve with Apple cider vinegar or Betaine HCL

thyroidpharmacist.com/artic...

drmyhill.co.uk/wiki/hypochl...

You will need to supplement B12 and good vitamin B complex. To improve ferritin you might find liver once a week enough, if not then will need iron too

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

See SeasideSusie detailed vitamin advice

healthunlocked.com/thyroidu...

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Thank you for the advice, I thought the FT4 was seemed low - will go to another doctor to get retested as this one was unwilling to do it (she said I would have to pay for it).

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rer2904 Unfortunately doctors seem to know very little of the importance of optimal nutrient levels where our thyroid health is concerned. For thyroid hormone to work we need all our vitamins and minerals to be optimal.

Ferritin = 20.1 (range: 13.0 - 150)

For thyroid hormone to work (that's our own as well as replacement hormone) ferritin needs to be at least 70, preferably half way through range. Yours is very low and I'm not sure whether your doctor would be prepared to prescribe iron tablets, or even guide you to how much you need if you provide your own. I don't like recommending iron tablets because there's more than just ferritin involved, so I think you should ask your GP to also do a full blood count and iron panel then look at the whole picture.

In the meantime, you can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, and including lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in...

If you do start taking iron tablets, then take each one with 1000mg Vitamin C to aid absorption and help prevent constipaton. Always take iron 4 hours away from thyroid meds and two hours away from other medication and supplements as it will affect absorption.

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B12 = 221 (range: 211 - 911)

Because B12 and folate work together you need to have your folate tested.

Do you have any signs of B12 deficiency b12deficiency.info/signs-an...

You should post on the Pernicious Anaemia Society forum when you have your folate level, then quote that, your B12, ferritin and any iron panel/full blood count results, together with any signs of B12 deficiency you may have healthunlocked.com/pasoc

I have read (but not researched so don't have links) that BCSH, UKNEQAS and NICE guidelines recommend:

"In the presence of discordance between test results and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."

And an extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

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As all nutrients need to be tested and be optimal, you should get Vit D tested too.

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TSH = 0.85 (range: 0.55 - 4.80)

FT4 = 9.49 (range: 8.90 - 17.6)

Your thyroid levels are not optimal unless you are feel well and without symptoms. She is going by the fact that your TSH is low in range (which is exactly where it should be).

From thyroiduk.org.uk/tuk/about_... > Treatment Options:

According to the BMA's booklet, "Understanding Thyroid Disorders", many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above.

The booklet is written by Dr Anthony Toft, past president of the British Thyroid Association and leading endocrinologist. It's published by the British Medical Association for patients. Avalable on Amazon and from pharmacies for £4.95 and might be worth buying to highlight the appropriate part and show your doctor.

Also -

Dr Toft states in Pulse Magazine, "The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the article by emailing louise.roberts@thyroiduk.org print it and highlight question 6 to show your doctor.

So I think you should have an increase in your Levo to get your FT4 up, you need to see where your FT3 lies so get that tested, and you need to work on getting all vitamins and minerals optimal.

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This is very helpful, thank you! Will ask for a full blood count but I think I will see a different doctor next time.

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