Any advice on results please?

I was diagnosed with hypothyroidism 22 years ago, since when I have been on 125mcgs daily.

Eight years ago I began to experience joint and muscle pain and swelling, and pins and needles in my lower arms and legs during the warmer months, and these symptoms have become increasingly painful.

I have also suffered with overwhelming exhaustion and lack of motivation during this time.

Following a particularly stressful period two years ago my eyebrows almost completely disappeared, and the soles of my feet and palms of my hands became swollen and have remained so. They also redden and become uncomfortable with heat.

I have been regularly tested for inflammatory arthritis, but results have so far proved negative.

I do feel extremely unwell at times and it feels to me as if the medication is no longer working effectively. I also wonder if I am allergic to one or other of the levythyroxine ingredients, and I am aware that this medication can cause heat sensitivity.

I do wonder if adjustment to my thyroid medication may alleviate some of my painful symptoms.

I would add that I have found this site to be an invaluable source of information, which is why I requested the Vitamin D testing, and I now take a supplement for this.

My results are as follows:

TSH 1.42 mU/L (Range 0.30-4.00mU/L)

Free T4 20.0 pmol/L (10.50-24.50 pmol/L)

Free T3 4.2 pmol/L. (3.10-6.80 pmol/L)

Serum T3 (1) - Normal- No action

Serum vitamin B12 334ng/L. ( 191.00-900.00 mg/L

Vitamin D3 32 nmol/L (80.00-150.00nmol/L)

Serum Ferritin 62 ug/L (10.00-160.00ug/ L)

Serum Folate 9.3ug/L (3.80-20.00ug/L)

Any advice or comments would be greatly appreciated.

Many thanks


12 Replies

  • Welccome to the forum, Helena93.

    Ask for a Levothyroxine dose increase. Most people feel with TSH just above or below 1.0 with FT4 near the top 75% of range and FT3 near the top third of range. Read Dr. Toft's comments in Treatment Options in the link below. If you think a full copy of the Pulse article will be useful to show your GP email

    Low B12 can cause pins and needles so supplement 1,000mcg methylcobalamin B12 sublingual lozenges, spray or patches and take a B Complex vitamin to keep the other B vitamins balanced.

    Folate looks fine and will be boosted by the folic acid in the B complex.

    Low vitD causes musculoskeletal pain. VitD is optimal 75-200 so supplement 5,000iu vitD3 for 6-8 weeks and then reduce to 2-3,000iu daily or 5,000iu alternate days.

    Ferritin is optimal half way through range. Eating iron rich red meat and liver should improve ferritin. If you supplement iron take the tablet with 500-1,000mg vitamin C to aid absorption and mitigate constipation and retest after 6 months to check level isn't too high. Stop supplementing iron a couple of weeks prior to testing.

  • Many thanks for such a prompt and comprehensive response- Much appreciated.

  • I would sort out your vit D first, preferably with your doctor. Your vit D is very low, your GP should also check your calcium levels and follow it up if neccessary (including PTH levels if the calcium is low and doesn't respond). I would ask for a small increase in your levothyroine (to 150 mcg) if you are not any better once your vit D has been sorted.

  • Thank you very much for responding to my query- I shall certainly follow through on your advice.

    I think that I must have been very low on Vitamin D for some years, and I appreciate your advice on calcium levels which I shall ask my GP to check.

    It is very re-assuring to have access to the wealth of experience which is shared on this site.

    Thank you once again.

  • It's important to take K2 with high doses of D3 to make sure it goes to your bones and not into the arteries or tissues. I'd recommend the following books:

    "Vitamin K2 and the Calcium Paradox- How a Little Known Vitamin Could Save Your Life", written by Kate Rheahme-Bleue.

    "The Miraculous Results of Extremely High Doses of the Sunshine Hormone Vitamin D3...." By Jeff T. Bowles

  • Thank you very much

  • You're not converting very well, are you, your FT3 is only just Under mid-range, and most people need it up the top of the range to feel well. This could be due to your low nutrients : vit D, ferritin, B12... and that's only the ones we know about.

    That B12 is low enough to cause a lot of symptoms. When mine was that level, I'd almost lost the use of my right arm - and the doctor had no idea what was wrong with me, of course! It's completely recovered since I've been taking B12 suppléments. (With a B complex.)

    Low B12 can also mimic the symptoms of hypo, so what with that and your low FT3, I'm not really surprised you Don't feel well. I would think that rather than an increase in Levo, ask your doctor if he could add a bit of T3 (Cynomel), that would do you the world of good! If he refuses, ask for a referral to an endo. It's Worth a try!

    Hugs, Grey

  • Thank you very much for your interesting advice, which I shall follow through upon, and how fortunate that you somehow eventually managed to identify for yourself your low B12!

    It is both disappointing, and difficult to comprehend, as to why the medical profession seem to have so little knowledge and/or interest in thyroid issues.

    I only requested the Vitamin D, B12 and T3 (I had to request latter three times before a result was actually obtained!) because I learnt about them from this site, and previously I had asked for a cholesterol check because I had read that thyroid issues can affect these, and mine was indeed high.

    Anyway- I now feel very well equipped to consult with my Doctor further.

    Many thanks once again


  • No, it isn't difficult at all. Everything doctors learn in med school is controlled by Big Pharma, and it's not in their interest for us to get well. They just want to keep us alive so that we can take their pills for all our symptoms - statins alone are making them several small fortunes! and your doctor is getting paid to prescribe them! If we were properly treated and well, we wouldn't need all their dangerous drugs and they would lose a lot of money! We are their cash-cows, and they've openly admitted it!

    What is amazing is that doctors can't seem to grasp that what they've been taught isn't working. Why Don't they do some thinking for themselves? Or are they not capable? Or do they just not care...

  • Thank you for your response.

    It is certainly difficult to understand the ethical position of the Doctors in this respect, and, clearly, it should be mandatory for them to disclose to each patient when, and the amount, they get paid to prescribe a particular treatment.

    I am sure that they would be keen to know this if they were being prescribed any form of treatment themselves!

    However, with the overwhelming influence of the drug companies-as you have highlighted- this will never be likely to happen!

  • In many other European countries and Japan, Helena, your B12 would be considered low and "deficiencies begin to appear in the cerebral spinal fluid below 550 pg/ml." "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."

    Autoimmune thyroid disease and B12 deficiency are often interlinked and symptoms overlap, but severe fatigue and tingling in arms and legs are neurological symptoms of B12 deficiency and should be treated without delay, as "there is a critical window of opportunity before permanent cognitive changes or injury result".

    These links give lots of information and advice on writing to your GP, if you want to try for B12 injections, which would be the ideal treatment, or alternatively, you could try Jarrows methylcobalamin 5000 mcg., sublingually from Amazon, which have good results for these symptoms. Be aware though that, if you supplement, this will skew later results if you then decide to ask for injections:

    Cmim/BMJ document. " Summary:

    * Vitamin B12 deficiency is a common but serious condition

    * Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment.

    * There is no ideal test to define deficiency and therefore the clinical condition of the patient is of utmost importance."

    * There is evidence that new techniques, such as measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency.

    * If clinical features suggest deficiency, then it is important to treat patients to avoid neurological impairment even if there may be discordance between test results and clinical features.

    Severe deficiency shows evidence of bone marrow suppression, clear evidence of neurological features and risk of cardiomyopathy.

    It is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases, treatment should still be given without delay."

  • Thank you so much for taking the trouble to respond and for providing such a wealth of information on Vitamin B12, which I shall most definitely arrange to supplement.

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