I am wondering if anyone is able to help please - following my previous posts when I have had some really helpful advice - I am wondering if there might be someone else who is experiencing similar problems please.
I have been suffering Parathesia in my feet and legs since January 22
After advice from this forum I have been taking B12 Drops since 8/10/22 and B Complex 2 per day since 2/11/22 these also contain Folate.
My B12 Blood results showed an increase from 1/10/22 when it was - 249 - to 567 on 18/10 after having been on B12 Drops for 18 days - looking back at your advice I see that you have suggested stopping the B12 when I reached 500 - so am now wondering if this might be having an affect on my burning feet ?
But over the past few weeks the burning pain in my feet - particularly my right foot has increased to the extent that I am woken by this and am having very disturbed nights which is quite distressing.
I am now on an increased dose of 100mcg dose of Thyroxine since 1/11/22 - and three weeks later have just sensed a lessening of the numerous symptoms that I have been suffering for the past 16 months which is very exciting !
I would be very grateful for any advice regarding my burning feet so that I can get back to having undisturbed nights and more settled sleep.
Many thanks Lemondrizz.
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Lemondrizz1
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We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes:
Males 16-60: 30-400 ug/L
Female's: 16-60: 30-150
Both >60: 30-650
The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘
Thank you Slow Dragon - My GP has been asking for full TSH T4 and T3 tests on each occasion - but the laboratories have either just done TSH or on the last occasion TSH and T3 but realise that all three are necessary for full Thyroid Picture - so do intend to get private testing of all three at end of December when needed just to be sure.
My consultant had TSH 5.6 and T4 9.1 when I was first started on Thyroxine but I have never had all three tests
I have had Thyroid Peroxidase test which came back as 4.25iu/ml 0 - 24.9 - so should I get this done again please - I have not had the TG test as far as I know.
When I was on 75mcg Levo - it was 50 Accord and 25 North Star
I am now on 100mcg Levo Accord
No appointment with Hematologist as yet - GP has referred me for PET Scan to be sure that nothing has been missed as no one can account for Raised Ferritin and also to speak with haematologist ??? Possibly another long wait - although consultant now saying Raised Ferritin nothing to worry about as I have had so many tests/procedures ??
I am also wondering now if the symptoms that I now have might be as a result of the Raised Ferritin - as looking on a NHS site for RF there is a list of symptoms very much as I am experiencing - ??
No one really seems to have any answers or can understand why I am still feeling so unwell.
There are two different antibodies linked to autoimmune hypothyroid disease
TPO and TG antibodies
NHS currently refuses to test Thyroglobulin antibodies if TPO antibodies are negative. Significant minority of Hashimoto’s patients only have high TG antibodies….obviously they struggle to get cause diagnosed.
Elevated TgAb levels are associated with symptom burden in HT patients, suggesting a role of thyroid autoimmunity in clinical manifestations of HT. Based on these results, we recommend screening for TgAb antibodies in HT patients with symptom burden
Medichecks or Blue horizon can test TSH, Ft4 and Ft3 plus BOTH Thyroid antibodies together
Northstar 25mcg is Teva brand
Teva upsets many people….best avoided unless lactose intolerant
Accord make 50mcg and 100mcg. Also boxed as Almus via Boots or Northstar via Lloyds
Accord don’t make 25mcg tablets
Higher ferritin levels are to be expected post menopause.
Raised ferritin common with inflammation.
GP should do full iron panel test to see if iron is also high….or only ferritin.
After exclusion of hereditary haemochromatosis, investigation of elevated serum ferritin involves identifying alcohol consumption, metabolic syndrome, obesity, diabetes, liver disease, malignancy, infection or inflammation as causative factors. Referral to a gastroenterologist, haematologist or physician with an interest in iron overload is appropriate if serum ferritin is >1000 µg/L or if the cause of elevated serum ferritin is still unclear.
I have high tendency for high ferritin…..almost certainly due to Hashimoto’s and being post menopause.
I had already done genetic test via Ancestry….and had results evaluated for health cheaply via
Thank you Red Apple - I wouldn't say that they are swollen - but they do feel tight - I have felt this was because of the Parathesia - I always describe it as crackly feet ? Yes they are discoloured - red/purple and yes they only burn at night - when I get up the pain goes away. Often I am forced out of bed by the pain.
Do they feel hot if you touch them with your hands?
A couple of suggestions:
The fact that this only happens at night could be a clue to the cause being connected to food. Histamine intolerance can cause burning feet. So, you could try taking an OTC anti-histamine such as cetirizine when you go to bed. If this helps, investigate histamine intolerance further. It's not uncommon in people with thyroid disorders (I have this myself).
Try using some cooling Aloe Vera gel on them before you go to bed, the sort that's often sold for sunburn relief. This moisturises the skin, which can dry out when they burn, causing additional pain.
Hello Red Apple - Thank you so much for your suggestions regarding my Burning Feet at night - and your suggestion, about taking a cetirizine tablet at night - I have been doing this and it has worked like magic !! - and is such a relief !!
The only thing that I am now finding is that I am constantly oversleeping and find it really difficult to wake up and feel half baked for half of the day - I tried just taking half a tablet - but then started to get the burning pains by the morning - so now I am experiementing by taking them earlier in the evening say 7pm so that they are still working throught the night. Still oversleeping I will try to see just how much further forward I can bring them during the day - but still getting the relief at night.
Sorry for the delay in getting back to you - but I have been recovering from Covid -my first time - having escaped it all this time it finally caught up with me!! I hope that you are keeping as warm and well as possible.
Lemondrizz1, Cetirizine is supposed to be a 'non-drowsy' anti-histamine, so I'm surprised if that is causing you to oversleep. It doesn't do that for me, but of course people can react differently to medicines. Very pleased it's helping your burning feet though. I'd consider whether anything else could be causing the oversleeping. Too much or too little thyroid hormone, or a Covid symptom that has yet to resolve perhaps?
Jaydee - this is very helpful - strangely I will check tonight - but although my feet are burning - I think that my feet are actually cold - and sometimes I put socks on because of this - I think that i have some antihistamine tablets - so may try this tonight to see if it helps - is your condition now under control and are you now free of the burning pain ? It is so hard to realise just how painful and disturbing it is especially when it is preventing your sleep.
I have a very long way to go being only 1 month into treatment. My symptoms are slightly different to yours so cannot compare. I see minor improvements in some things and others like the terrible insomnia got worse, although not so bad past few days.
Just expect things to be worse for a few months. It’s called reversing out.
Unfortunately my burning feet is a permanent thing. I have both the histamine intolerance and erythromelalgia. Antihistamines and aloe vera gel live on my beside table. Both were worse when my thyroid levels were not optimal, so that is important. The erythromelagia is the worst. I have a drawer full of socks that I've not been able to wear for many years. Bare feet in sandals all year round for me, excpet in the worst of weathers when I wear ankle boots for protection, but without socks.
So sorry Red Apple that you are having such a difficult time - I feel hearing others problems that I have little to complain about - but the main thing I have learnt is how little help or support there is from th NHS or even any understanding with any Thyroid problems .
if you have been b12 deficient then it’s possible symptoms can get worse before getting better.
This is similar to what happened o me when I started the B complex. I had awful tongue and sleep issues. In the end I decided to self inject b12. After 1 month the insomnia is now improving.
Thank you Jaydee - I had asked for B12 injection treatment - but on the last reading of 567 my consultant said this wasn't necessary - this reading was only on B12 Drops and I have since added in the B Complex so am not sure what my reading is now. I have had some burning in the past - but nothing like it is now -
^^^^The above could be of possible interest to you. Also you mentioned your b12 results but didnt share the range. I wouldn't be feeling great if my b12 was 500. For reference, mine hovers around 1000. If you go on the pernicious forum on healthunlocked, you'll find that most would say that your 500 is on the low side unless the range ends at 500.
You're very welcome. Your results are showing as 64% through the range. Just slight above halfway. I'm not really well versed on b12 so hopefully the pernicious group can help guide you. Wishing you better health. Hopefully getting your folate, ferratin, b12 and thyroid optimal will put you at a better place. All the best.
I had burning skin sensation for a pretty long time after I had my thyroidectomy and numerous doctors and neurologists couldn’t come up with a reason why this was happening eventually the neurologist settled on small fiber neuropathy for no know reason ( I call bull on no known reason) In my opinion I believe it came down to hormonal upset and eventually it went away it took 2 years …. I combated my issue by wearing clothing to bed to keep my skin from touching anything and socks …Sorry I have no real solution because my doctors were useless in this matter.
Simple solution which has helped me for years is to take a hot waterb ottle frozen in the freezer, with a cover on it, to bed, and when your feet get hot you soon cool them. Your feet will not stay on the bottle all night, as you move so will they, but if I wake up, i find the bottle in the bed and return comfortably to slumber.
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