Back of legs & feet

[Florah]

Good morning,

I'm currently experiencing aching and discomfort to the back of my legs. And like pins/needles to my feet?

Does anybody know what causes this?

How can it be treated?

Any information, would be appreciated?

Thank you

[SeasideSusie Remembering]

Florah

Looking at your post from a month ago when you posted your results, what's happened about your poor ferritin level of 11? Did you get iron panel done to see if you have iron deficiency? It even mentions iron deficiency on your results report posted before.

Did you get Vit D tested - muscle and joint aches and pains can be low Vit D.

Pins and needles can be low B12. I see your B12 level was 363ng/L (ng/L is the same as pg/ml below). According to 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."

Some people with a result in the 300s have been found to need B12 injections. Do you have any signs of B12 deficiency – check here:

b12deficiency.info/signs-an...

b12d.org/submit/document?id=46

If you do then list them to discuss with your GP and ask for testing for B12 deficiency and Pernicious Anaemia. Do not take any B12 supplements or folic acid/folate/B Complex supplements before further testing of B12 as this will mask signs of B12 deficiency and skew results and if you have B12 deficiency is not detected and treated then this could affect your nervous system. B12 deficiency should be treated before starting folic acid because folic acid can sometimes improve your symptoms so much that is masks B12 deficiency.

If you don't then you could supplement with B12 sublingual methylcobalamin. Use one bottle plus a good quality bioavailable B Complex to balance all the B vitamins. When the bottle of B12 is finished then just continue with the B Complex to continue to improve then maintain your new B12 level.

Suggestions for B12 supplements which include two forms of bioactive B12 - methylcobalamin and adenosylcobalamin which you might want to check out:

Cytoplan sublingual B12 lozenges

cytoplan.co.uk/vitamin-b12-...

Nature Provides sublingual liquid

amazon.co.uk/Bioactive-METH...

Note that the Nature Provides supplement contains a much higher dose than the Cytoplan one.

For B Complex I have used Thorne Basic B for a long time and always been happy.

If you look at different brands then look for the words "bioavailable" or "bioactive" and ensure they contain methylcobalamin (not cyanocobalamin) and methylfolate (not folic acid). Avoid any that contain Vit C as this stops the body from using the B12. Vit C and B12 need to be taken 2 hours apart.

When taking a B Complex we should leave this off for 3-7 days before any blood test because it contains biotin and this gives false results when biotin is used in the testing procedure (which most labs do). See

[Florah in reply to SeasideSusie]

SeasideSusie Thank you for your comment- I have now been prescribed Ferrous Fumarate 210mg and will then have a blood test in 3 months. I believe that's for iron

[Buddy195 Administrator]

Have you recent thyroid blood tests to share Florah? Have you tested key vitamins (ferritin, folate, vitamins B12 and D)?

I get achey legs if either thyroid medication or Key vitamins are not optimal. A good B Complex helped me (I use Thorne) but please don’t supplement until you have tested levels first. I find magnesium salts in the bath plus a daily magnesium supplement also helps relieve aches.

[SlowDragon Administrator]

previous post

healthunlocked.com/thyroidu...

Did you see endocrinologist this week?

Are you now taking daily vitamin B complex and separate B12 supplements?

Have you coeliac blood test and vitamin D tested yet?

Low vitamin D tends to contribute to plantar fasciitis

Pins and needles low B vitamins especially B12

Has GP/endo done full iron panel test for anaemia yet

Ferritin is extremely deficient at 11

Likely to need daily iron supplements or iron transfusion

All four vitamins need to be OPTIMAL For levothyroxine to work well

[Florah in reply to SlowDragon]

SlowDragon Thank you for your comment

I saw endo last Friday, I asked her about taking Vitamins, she only said Vitamin D.

No coeliac test

Im now taking Ferrous Fumarate 210mg tablets (GP prescribed after bloods), im not anaemic but low iron

Next blood test will be antibodies

[humanbean in reply to Florah]

Im now taking Ferrous Fumarate 210mg tablets

How many a day?

[Florah in reply to humanbean]

humanbean 1 x

[humanbean in reply to Florah]

That's a very low dose. The BNF (British National Formulary) suggests a dose of 1 tablet, 2 - 3 times a day :

bnf.nice.org.uk/drugs/ferro...

If you don't get on well with ferrous fumarate 210mg there are many other optionsd available:

healthunlocked.com/thyroidu...

Another thread you might find of interest is this one :

healthunlocked.com/thyroidu...

Make sure you take iron tablets four hours away from thyroid hormones, because iron can drastically reduce absorption of thyroid hormones.

[Florah in reply to humanbean]

humanbean I think I was given that dose as I was border line not fully anaemic. Should take blood tests after 3 months of taking it.

[Florah]

Buddy195 Thank you for your comment. I saw the consultant last friday. i've now gone down to 50mcg from 100. She explained i've gone more over now and offered to reduce my dose or come off all meds (Levo). I'm confused as to why she asked me that. I still haven't got my results yet!

[Buddy195 Administrator in reply to Florah]

A reduction of 50mcg is quite significant…. I would go more slowly with a 25mcg reduction at first. My personal experience leads me to increase or decrease Levothyroxine super slowly in increments of 12.5mcg (using a pill cutter!)

Was your endo basing the need to reduce on your TSH going under range? If your FT3 and FT4 are within range, you may not actually need the (full) reduction.

[adin]

Maybe I am wrong, but the causes can be too high doses, diabetes, or vitamin deficiency.

[Florah]

adin thank you for your comment.

Haemoglobin A1C level- IFCC standardised 38 mmol/mol

HbA0; HbA1c <42 mmol/mol: Which said not consistent with diabetes mellitus

Dose has been reduced from 100mcg to 50mcg on Friday - 2/9/22

Told to take Vitamin D

[Regenallotment Ambassador]

That’s a big drop in Levo dose, that would make my legs ache too. I take it your Endo doesn’t take Levothyroxine and has no clue what halving your dose in one go might do. You may have to take things into your own hands and accept the ‘experts’ are not that knowledgeable about your condition. Being deficient in all those vitamins mentioned will mean you aren’t absorbing your Levo very well. I’d be worried this latest change in treatment will leave you feeling worse not better. Hope you can get the help you need 👍.

[Florah]

Regenallotment , Im thinking the same, she said to either drop it to 50mcg from 100mcg. Or to come off completely, and gave me that option. My legs are hurting, I will be calling the doctor Monday. I feel so unsupported or and fed up.

[SlowDragon Administrator in reply to Florah]

suspect this was a diabetes specialist

Would recommend staying on current dose or only reducing a tiny amount (eg 12,5mcg ) per day

Extremely low ferritin will have lowered TSH significantly

Low vitamin levels suggests inadequate dose levothyroxine or poor gut absorption

healthunlocked.com/thyroidu...

Your extremely high TPO antibodies confirms your definitely have autoimmune thyroid disease

no ranges ….but TSH over 5 confirms you should be on levothyroxine

TSH- 9.88

FT3- 3.7

FT4- 13.9

Come back with new post once you get thyroid results after 6-8 weeks on 100mcg

Endocrinologist told you to take vitamin D

how much?

What was vitamin D result

[Regenallotment Ambassador]

good for you, be firm and explain Thyroid UK (not the forum) have advised you a drop like this is likely to make you very unwell and that you need print outs of your results and testing for your vitamin levels (you may have to do this privately) then get on top of this low ferritin business. Could you force down a bit of liver weekly or pate?

For context my GP says ‘do nothing’ if any of my bits levels are close to normal. In contrast the amazing info from Seasidesusie above tells us that in reality, with our diagnosis we are going to need much higher levels of supplements in range to feel well. E.g. 4000iu of vitamin D K2 spray for 12 weeks has increased my D from 47 to 75. GP thought taking 1000iu would be excessive. I’m not even over 100 yet after 3 months on the higher dose! We have to take charge ourselves 🦋💚🦋

[Florah]

Regenallotment thank you for your message.

I’ve contacted 111 hoping I can get some support, waiting a call back. I agree we need to support ourselves. This is all new to me just over a year. It’s so confusing and feel really alone to be honest. I don’t know where to start.

[Regenallotment Ambassador in reply to Florah]

that’s where this forum is so great isn’t it. Sorry you feel so dreadful, do you have enough Levo stocks to go back up to to your previous dose? Or part way? I think that would be my approach. It’s ok to cut a pill in half and do it gradually. Yes I’m new to all this too, I’m only as far as 75mcg and taking it slow. Getting on top of the nutrition and vitamins has had a massive impact. But saying that, I still get achey days. Sending you all my best wishes 🦋💚🦋