Burning feet and hands update, advice please. - Thyroid UK

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Burning feet and hands update, advice please.

FW23 profile image
FW23
45 Replies

Burning feet and hands update.

Hi all, thank you so much for your really helpful replies. I managed to get an appointment with a GP who I hadn’t seen before and was disarmingly young. She looked at my recent bloods but I’m not sure she knew what she was looking at. I’m not totally sure how but she asked if I would be willing to see a private endocrinologist since she said she knew an excellent one in London and has given me a referral for him. I said I would go private if they really did specialise in the thyroid and not diabetes. I asked for a trial on T4 but she thought it would be better to see the consultant first.

I asked if she would arrange for me to have full blood test beforehand and below are the results. I can see there are a few problems, but I’d really like your advice on where to start, since I trust the opinon of the community.

Also the consultant my GP suggested works at the Physicians Clinic in London and I wondered if anyone had experience of going there? Also does anyone have a good endocrinologist in London they could recommend?

Thanks for all your support

Blood NHS 17th November 2023

Test Results Range Percentage

TSH  2.51 mIU/L (0.27 - 4.20)  57.0%

Free T4 (fT4)  19.8 pmol/L (11.9 - 21.6)  81.4%

Free T3 (fT3)  4.0 pmol/L (3.10 - 6.8)  24.3%

T4:T3 Ratio 4.950 

Folate - Serum  9.7 ug/L (2.9 - 50)  14.4%

Vitamin D 51 nmol/L (51 - 250)  0.0%

Ferritin 139 ug/L (40 - 250)  47.1%

Serum vitamin B12 578 ng/L (160 - 925)  54.6%

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FW23
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45 Replies
TiggerMe profile image
TiggerMeAmbassador

So looking at those you need to get yourself a decent B Complex such as Thorne Basic B or Igennus Super B to get your B12 and folate up nearer the top of range and also a some D3 with K2-MK7 Nature provides does a good sublingual (aiming for 100+).... these things will give you a better chance of converting fT4 into active fT3

You might find this will make all the difference 🤗

FW23 profile image
FW23 in reply toTiggerMe

Thank you, I'll do that tomorrow. Can I start taking them together.

TiggerMe profile image
TiggerMeAmbassador in reply toFW23

Yes not a problem, always recommend taking B's in the morning as they can be stimulating and sub lingual Vit D won't interfere with anything

Some say to start one thing at a time if you are sensitive

FW23 profile image
FW23 in reply toTiggerMe

Thank you.

Star13 profile image
Star13

Better You Vit D oral Spray is recommended - comes with or without K and you can get different strengths. Prob the 3000 or 4000 would be best to get yours up.

FW23 profile image
FW23 in reply toStar13

Thank you, will do 😊

Mixteca profile image
Mixteca in reply toFW23

I got my vit D up fairly quickly when I doubled my dose of 2000 iu to 4000.

Star13 profile image
Star13 in reply toStar13

Just seen they have 20% off for a couple more days only - betteryou.com/collections/v...

FW23 profile image
FW23 in reply toStar13

😊👍

TiggerMe profile image
TiggerMeAmbassador in reply toStar13

Cheaper on Amazon but they do add stuff like xylitol and a few other excipients 😕

FW23 profile image
FW23 in reply toTiggerMe

I think Boots have a deal on Better You. I'll have a look around. Just read that there are Vit D injections. Would this be useful to raise my levels quickly.

TiggerMe profile image
TiggerMeAmbassador in reply toFW23

I don't know about those? Perhaps pop a new post up for feedback

I didn't find it hard to get levels up with sublingual, I double dosed the first couple of weeks 😏 you'll need magnesium to make good use of Vit D... and so the list grows 😁

FW23 profile image
FW23 in reply toTiggerMe

Thank you

RedApple profile image
RedAppleAdministrator in reply toFW23

'Just read that there are Vit D injections. '

Not advisable in my opinion as some people cannot tolerate large doses all at once, and you won't necessarily know that you're one of them until it's too late! Better to raise your levels steadily by taking oral supplements. Vitamin D can also be applied to the skin instead (transdermal). Just open a liquid gel capsule and rub the contents into a fleshy part of your body.

FW23 profile image
FW23 in reply toRedApple

Yes maybe slow and steady. Thanks

JGBH profile image
JGBH in reply toStar13

I understand that the ratio of VitD3 to VitK2MK7 isn’t enough. So no, this brand in not really recommended. I am a member of the Vitamin D and cofactors group and they have devised a protocol. Anyone can join. Worth looking at on Facebook. Hope this is helpful. I used this product in the past but have now stopped using it as there isn’t enough VitK….

TiggerMe profile image
TiggerMeAmbassador in reply toJGBH

Thanks the that, great knowledge... which current products do you use or recommend?

Does this sound right?...

The best ratio of vitamin D3 to K2 is 1000:10, meaning you should take 10 mcg of vitamin K2 for every 1000 IU of vitamin D3.

JGBH profile image
JGBH in reply toTiggerMe

I stopped using VitD3 when I finished my the bottle before I had a hip replacement operation in February. It took me a while to recover and I didn’t restart taking VitD3…. However, I will try naturplus VitD3 (my choice is 4000 IU but you ca decide 5000 or 3000 and adjust to a higher/lower dose later after testing). The link I was given is:

htpps:/naturplus.uk/collections/vi...

Then , apparently, the best VitK2 is:

Bro son vitK2 as VitK2MK7 (as Menaquinone)100 mcg , GMO free 120 capsules This product as superior quality bioavailability and a trusted brand. Magnesium is also required as a cofactors helping with VitD absorption and absorption of calcium. Research is important.

I might use a VitK2 with only 75 mcg.. Will do further research before placing an order.

I am not medically qualified, taking advice from people who have been researching this subject for a long time and the VitaminD and cofactors group.

Please do your research before deciding what you need. Good luck.

JGBH profile image
JGBH in reply toTiggerMe

Where did you get this ratio from?

TiggerMe profile image
TiggerMeAmbassador in reply toJGBH

drberg.com/blog/best-ratio-...

RedApple profile image
RedAppleAdministrator in reply toJGBH

JGBH 'Anyone can join. Worth looking at on Facebook. '

There are plenty of people that prefer not to join FB for all sorts of valid reasons. Those people might appreciate it if you could give some clues about this protocol here on the forum?

JGBH profile image
JGBH in reply toRedApple

This group is similar to HealthUnlocked group. Many people choose not to use Fb, which I understand. One needs to be careful and sensible and taking responsibility. Their interest is in VitD3 and cofactors. The administrators have done intensive research (just as people do on HU) on use of VItD and cofactors. They have also researched the prices (they don’t have any financial interests) giving several options. Like on HU it is only advice of course and people need to check for themselves, doing their own research. Best wishes.

TiggerMe profile image
TiggerMeAmbassador in reply toJGBH

I'm with RedApple I don't really get on with Facebook... what ratio do they suggest?

JGBH profile image
JGBH in reply toTiggerMe

Please where did you get the ratio you mentioned from ? Am interested to know.

TiggerMe profile image
TiggerMeAmbassador in reply toJGBH

Sorry we are crossing paths... Dr Eric Berg link posted above 🤗

He does some very clear explanations on most things

JGBH profile image
JGBH in reply toTiggerMe

Thank you for the link.

Having read it and I note he said 90 mcg VitK2 per 1000 IU VitD3…. Then goes back to state 10 mcg/1000 IIU Vit D3… hum confusing.

It’s up to you to decide what might be best for you, we all need to take responsibility for our decisions of course

I have decided to to take 45 mcg vitK2 per 1000 IU VitD3 to start with. I wil monitor closely and will let my GP know. If necessary I shall increase/decrease accordingly.

TiggerMe profile image
TiggerMeAmbassador in reply toJGBH

I think the 90mcg is referring to RDA?

This made sense from the NHS as it addresses weight...

NHS

nhs.uk/conditions/vitamins-...

Vitamins and minerals - Vitamin K - NHS

Adults need approximately 1 microgram a day of vitamin K for each kilogram of their body weight. For example, someone who weighs 65kg would need 65 micrograms a day of vitamin K, while a person who weighs 75kg would need 75 micrograms a day.

Star13 profile image
Star13 in reply toJGBH

Well I can’t use Vit K so Better You is fine for me and took my Vit D from 50 to 100!

RedApple profile image
RedAppleAdministrator in reply toStar13

Star13, ' I can’t use Vit K '

That's interesting, are you able to explain why?

Star13 profile image
Star13 in reply toRedApple

Because I also have a clotting disease so it’s contra indicated. Anyone who has had a clot or who takes anticoagulants can’t take Vit K as far as I understand.

JGBH profile image
JGBH in reply toStar13

Indeed that is correct. Anyone on anticoagulant must not use VitK.

humanbean profile image
humanbean in reply toStar13

Vitamin K1 is the one that is associated with clotting.

Vitamin K2 is relevant to bones and calcium. K2 helps to regulate calcium to reduce the risk of it ending up lining your arteries.

I haven't heard that K2 increases clotting but then I haven't studied the subject that much. I do have this link which I bookmarked so long ago I can't remember much about it, but it has over 1200 comments too.

chrismasterjohnphd.com/blog...

Edit : clotting and anticoagulants are mentioned in the link, so do a search within that link to see if K2 could be problematic for you.

Star13 profile image
Star13 in reply tohumanbean

I’m going on the advice on the Better You website which advices anyone on anticoagulants or blood thinners not to use that option.

APAscot profile image
APAscot in reply toRedApple

Warfarin?

JGBH profile image
JGBH in reply toStar13

Well, that’s the idea, we all need to find what suits us since we’re all different. The ‘recommendations’ are guidelines. Therefore we need to take responsibility for our decisions. We need to find what is working for us, as individuals.

jamesal0 profile image
jamesal0

take a day or two off levo and see if your hands and feet stop burning

FW23 profile image
FW23 in reply tojamesal0

Thanks jamesal0, how will this help me. 😊

jamesal0 profile image
jamesal0 in reply toFW23

If you are taking too much Levo, one of the symptoms is peripheral nerve pain. Very easy to test. Just have a break. You are carrying 5-7 days worth in you, so a few day doesn't hurt

SlowDragon profile image
SlowDragonAdministrator

vitamin D is much too low

How much vitamin D are you currently taking

GP will often only prescribe to bring vitamin D levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via NHS private testing service when supplementing

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.

There’s a version made that also contains vitamin K2 Mk7.

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average

Vitamin D and thyroid disease

grassrootshealth.net/blog/t...

Vitamin D may prevent Autoimmune disease

newscientist.com/article/23...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Interesting article by Dr Malcolm Kendrick on magnesium

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

SlowDragon profile image
SlowDragonAdministrator

Was thyroid test done 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)

Is your hypothyroidism autoimmune

Have you ever had thyroid antibodies tested?

Which brand of levothyroxine are you currently taking

Do you always get same brand at each prescription

Are you currently taking any B vitamins ?

Low folate

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)

This can help keep all B vitamins in balance

Difference between folate and folic acid

healthline.com/nutrition/fo...

B vitamins best taken after breakfast

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)

Thorne currently difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay

Other options

healthunlocked.com/thyroidu....

Igennus B complex popular option too. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

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

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg)

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

helvella.blogspot.com/p/hel...

Improving vitamin levels should help improve conversion rate of Ft4 (levothyroxine) to Ft3 (active hormone )

Retest in 8 weeks

FW23 profile image
FW23 in reply toSlowDragon

Morning SlowDragon. I did the blood test following the protocol of the forum advice. I was taking Cytoplan D3+k2 and Pure B- complex Plus up until July but since there didn't seem to be any effect I stopped.I've bought Thorne Basic B Complex and intended taking it once my test results came back.

Should I wait a week before adding the folate and can I take it at the same time as the B complex?

I'm now taking mercurypharma which I've just change to from Teva. It doesn't seem to make any difference to me but I'll stick with this one now.

The last private test I had done showed my antibodies had gone up.

I had a full mineral blood test done about 7months ago and my mercury level was 0.98 (0.65-1.05) all other test were a little below average.

Do you think it would be worth having Vit D injections.? Also should I see the endocrinologist my GP recommended or try raising all my vitamin levels first? Thsnk you so much for giving me such detailed advice.😊

SlowDragon profile image
SlowDragonAdministrator in reply toFW23

How long have you been taking Cytoplan

Presumably this one?

cytoplan.co.uk/vitamin-d3-v...

Are you taking it with food, preferably a high fat content meal…..and 4 hours away from levothyroxine

I would get some vitamin D mouth spray and add another 2000iu daily

You should not need a separate folate and vitamin B complex

Just take a separate folate in the week before any blood test when you need to stop vitamin B complex

Are you on gluten free/dairy free diet

If not get coeliac blood test BEFORE trialing strictly gluten free

2-3 months later try dairy free

FW23 profile image
FW23 in reply toSlowDragon

I finished the Cytoplan a while ago, I took it 4hrs after meds with food. I've had a coeliac test which was negative. I'll try dairy free and see how that goes.

SlowDragon profile image
SlowDragonAdministrator in reply toFW23

Vitamin D

How long ago is “a while “

Many (most?) thyroid patients need to supplement continuously to maintain good vitamin D

Suggest you go back on 4000iu daily and retest in 2-3 months

coeliac negative

So are you now trialing gluten free

Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential

Santolina profile image
Santolina

I haven't gone through all 44 replies as they all seem related to supplements to re-dress the issue. However, it wasn't until I was diagnosed with peripheral neuropathy which included your symptoms as well as foot drop which was shocking, was I told this was due to DECADES of thyroid mis-diagnosis. In other words, there wasn't one UK GP/endocrinologist who thought there was a major problem with generics / the 'availability' issue which means short-changing the dosage by the unscrupulous; nor the issue of T3 which isn't provided by levothyroxine. And, medics didn't know how to prescribe 'natural' or even T3.

Getting the thyroid right was vital - Dr Sarah Myhill's book was a lifesaver. The GUT issue was also crucial - 'leaky gut' means vitamins don't get where they're supposed to be. So I changed my diet too. The GUT is the key to so much of what is a toxic environment and it's here that supplements are necessary, BUT only with the proper lab work.

BIG PHARMA is forecasting a demise of real food in the near future so eating & supporting local farms is necessary to ensure our children survive.

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