Next step in solving the mystery of my burning feet, but need a little bit of advice

[FW23]

Hi all I’m in need of some more advice. As suggested, I’ve tried raising my vitamin levels since Nov 2023 and although not perfect, they’ve gone up. I’m still having burning in my feet so decided to go to a consultant. Below are my most recent bloods.

7th Feb 2024 Medichecks

Blood tests Result Range

Free T3 4.1 pmol/L 3.1 – 6.8

Free Thyroxine 19.7 pmol/L 12 - 22

TSH 2.980 mlU/L 0.27 – 4.

Ferritin 135.00 ug/L 30 - 650

Vit B12 - Active 132.0 pmol/L 37.5 - 188

Vit D 134.0 nmol/L 50 -250

Thyroglobulin Antibodies 159.0 kIU/L 0-115

Thyroid Peroxidase Antibodies 17.7 klU/L 0-34

Folate (not able to process)

Last week I had a Zoom appointment with a consultation which, I think went well. It was a bit of a shock to have some take me seriously and ask questions about my issues. Really none of the ten GPs that I’ve seen at my surgery have ever questioned me about the burning. Long story short, the consultant suggested I have a trial of T3 (Liothyronine Thybon Henning) 5mcg twice a day. 5mcg with my T4 in the morning and 5mcg halfway through the afternoon. He is also suggesting that I take my usual 50mcg T4 Monday, Wed, Friday and Sunday and reduce my T4 to 25mcg on Tues, Thurs and Sat.

I’d really like your advice please. Are these instructions ok? I thought adding T3 would reduce my T4 level? If so, is it wise to add T3 and reduce T4 all at the same time? Should I start with adding T3 and then gradually reduce my T4 medication? How long before and after taking the mid-afternoon dose of T3 can I eat. Thank you for taking the time to reply, really grateful.

[RedApple]

FW23, Can you clarify what your current dose of thyroid hormone replacement is. I think you're still on 50mcg levothyroxine only, and that's what you were taking at the time of those Medichecks test results. Is that correct?

[FW23 in reply to RedApple]

Yes 50mcg.

[RedApple in reply to FW23]

I'm wondering why the zoom consultant suggested adding T3, rather than an increase in levothyroxine dose, which would be the normal course of action before resorting to T3. Have you previously tried a higher dose of levothyroxine at all?

[FW23 in reply to RedApple]

I'm not sure. I'll look at my doctors referral again. I don't think she mentioned T3. I asked my doctor to increase my T4 to 75mcg but she didnt want to do this. Her comment to the consultant in my referral letter is " she feels she is not medicated appropriately." I didn't mention T3.

[FW23 in reply to FW23]

What he actually said to me was that he felt I might be a poor converter and would try me on T3.

[RedApple in reply to FW23]

The usual course following diagnosis is to start on 50mcg levothyroxine and increase in 25mcg increments, until symptoms resolve, or TSH drops too low. If you've not trialled an increase in levothyroxine, then the consultant has no basis on which to suggest that you're a poor converter. Your body cannot convert what's not there to be converted.

From personal experience, I strongly suggest your burning feet are quite likely to be a symptom of under medication of T4. This is not an uncommon symptom of under medication.

TSH at 2.9 is too high for someone on replacement hormone. Your GP should already have trialled you on increasing doses of levothyroxine until TSH is around 1.

[FW23 in reply to RedApple]

I spoke to my Gp and she wouldn't increase my T4 to 75mcg, her response was to say I should see a consultant. What's my options now, should I query his decision or maybe change doctors.

[RedApple in reply to FW23]

Ideally, ask your GP again to increase your dose to 75mcg, with a re-test of your levels after 6-8 weeks.

Point out to your GP that she is not following the usual protocol. To back up your request, show her the Nice Guideline for treatment of hypothyroidism. Specifically, the section headed Initiation and titration on this page cks.nice.org.uk/topics/hypo...

---

Initiation and titration

The dose of levothyroxine (LT4) should be individualized on the basis of clinical response and thyroid function test (TFT) results. Treatment must be monitored regularly to determine an adequate dose and to avoid both under- and over-treatment.

The NICE clinical guideline recommends:

Consider starting LT4 at a dosage of 1.6 micrograms per kilogram of bodyweight per day (rounded to the nearest 25 micrograms) for adults under 65 years of age with primary hypothyroidism and no history of cardiovascular disease.

Consider starting LT4 at a dosage of 25–50 micrograms per day with titration for adults aged 65 years and over, and adults with a history of cardiovascular disease.

The British National Formulary (BNF) recommends:

For adults aged 18–49 years — initially 50–100 micrograms once daily; adjusted in steps of 25–50 micrograms every 3–4 weeks, adjusted according to response; maintenance 100–200 micrograms once daily.

For adults aged 50 years and over, with cardiovascular disease, or severe hypothyroidism — initially 25 micrograms once daily; adjusted in steps of 25 micrograms every 4 weeks, adjusted according to response; maintenance 50–200 micrograms once daily.

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If your GP still won't increase your dose, then you need to see a different GP.

[FW23 in reply to RedApple]

Thank you so much for your advice. I'm constantly shocked how little the medical profession knows about hypothyroidism. We're so lucky to have you all to consult with. I'll contact my GP tomorrow.

[RedApple in reply to FW23]

Do let us know how it goes 🤞

[FW23 in reply to RedApple]

Thank you RedApple, I will., Sadly the doctors in my surgery seem petrified of thyroid hormones, I think it's the lack of knowledge.

[RedApple in reply to FW23]

There's no excuse for their lack of knowledge, the information is there and it's not a rare disease! The aim is to resolve your symptoms and {hopefully) restore you to a normal quality of life. They should be working with the patient to achieve this, not just bringing blood numbers into range so that it looks good 'on paper'.

[SlowDragon Administrator]

Free T4 (fT4) 19.7 pmol/L (12 - 22) 77.0%

Free T3 (fT3) 4.1 pmol/L (3.1 - 6.8) 27.0%

was test early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Which brand of levothyroxine are you taking

How long have you been on just 50mcg levothyroxine

Approximately how much do you weigh in kilo

Exactly what vitamin supplements are you taking

[FW23]

Yes I followed the testing protocol you suggest. I've been on 50mcg since I was diagnosed 3 years ago and'm about 62 kilos.I've been taking BetterYou Vit D 3000+k2 and B12 but have now switched to Thorne Basic Complex. I was considering taking floradix but thought I might need to do a full iron panel first.

[FW23 in reply to FW23]

Im taking Mercurypharma and was also given Eltoxin which I think is the same.

[McPammy]

I wouldn’t lower your T4 medication just yet as your TSH was too high while only on T4 levo. I’d take the 5mcg T3 twice a day as well. Then see how your TSH is and levels in 2 months time. Take T3 5mcg 8 hrs apart. You don’t really need to avoid T3 from food like T4 levo. T3 is much more potent. It lasts about 8hrs but you build up a half life too. So within a week your t3 should have built up its half life. You could feel the benefits after a week.

A TSH over 2.5 you’ll feel symptoms. Aim is TSH of 1.00 approx. Aim is also to be symptom free but this is difficult with this chronic disease.

[FW23 in reply to McPammy]

Thank you McPammy I thin I'll return to my GP and discuss all these things with her,

[Rita-D]

I had burning feet syndrome when I was under medicated. My GP was clueless! Said she had never heard of burning feet syndrome. Told her to check Google. Sure enough when my meds were increased it went away and has never returned. Please insist on an increase, As RedApple says, your GP is not following protocol by leaving you on a starter dose and ignoring your obvious symptoms. It really is shocking how little GPs know! Good luck,

[FW23 in reply to Rita-D]

Thanks Rita-D Yes, I agree, I'll go back to my GP with printed information. Thank you for your advice.

[am111]

Burning feet can mean nerve damage due to B12 deficiency. Generally, nerve damage has a particular type of sensation and at least I can feel it.

If this is the case and you were previously B12 deficient and this has been corrected only recently, it will just take time and a change in thyroid meds won't help.

I am not an expert, but I take 50mcg levo and a B12 supplement and saying based on my personal experience.

[Lilian15]

About 23 years ago I had many debilitating symptoms. It was discovered I had low T3 and low B12. I went to private doctor to get T3 and my own GP diagnosed pernicious anaemia and started me on injections. All symptoms went, or improved 90%. As both conditions have similar symptoms I could not say which treatment was doing what. However 3 years ago GP stopped the B12 injections. Certain symptoms did not come back (obviously T3 as I am still taking that) so the other symptoms must have been B12. The worst recently coming back is the terrible burning feet at night. I have recently started having B12 injections again, but as yet it has not done anything for my burning feet, but I have only just had the loading doses, so I am hoping they have not left it too late to do permanent damage. So my burning feet was obviously my deficient B12. A note of warning, if you want to ask your GP to test for B12 do NOT take any supplements for at least 3 months. Are you vegan or vegetarian? I am not so my deficiency was absorption problems not dietary.

[RedApple in reply to Lilian15]

am111 Lilian15

As FW23's B12 test results show Vit B12 - Active 132.0 pmol/L 37.5 - 188, it's far more likely that her burning feet senation is a result of being undermedicated for hypothyroidism.

Getting the thyroid hormones to a sensible level is the first course of action in this case.

[FW23 in reply to RedApple]

Thank you all, much appreciated it's a complex area and no medical expertise in either of these areas in my surgery. I'll bear both of these in mind. With all the help on this site I'm hopfull of eventually being pain free.

[coppeen]

When I had burning feet it was a sign that I was pre-diabetic and not connected to the thyroid at all. Have you considered your blood sugar levels? Even now it would return if I were to eat something very sweet.