Neuropathy, any remedies please

[Grenard]

I’ve been on levothyroxine for about 20 years, now seem to have neuropathy in legs, any

help or remedies appreciated.

[TiggerMe Ambassador]

Have you had your B12 tested recently? B vits are important for nerve health

[Grenard in reply to TiggerMe]

thank you for your reply. My Dr. Says they are fine but I’ve just ordered some supplements to see if they will help.

[TiggerMe Ambassador in reply to Grenard]

If you could request your results (they are legally obliged to provide a printed copy if you don't have patient access set up) to share with us, Dr's have a very low bar when it comes to healthy levels of vits and mins!

[SlowDragon Administrator]

previous post a year ago

healthunlocked.com/thyroidu...

Showed low Ft3

Did you get dose increase in levothyroxine?

Suggest you retest full thyroid and vitamin levels annually

Are you now taking a daily vitamin B complex

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 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)

Thyroid always 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)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Only do private testing early Monday or Tuesday morning.

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

Monitor My Health (NHS private test service) offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65

(Doesn’t include thyroid antibodies)

monitormyhealth.org.uk/full...

10% off code here

thyroiduk.org/testing/priva...

[Grenard in reply to SlowDragon]

Yes, I re tested in July this year with m edichecks

Results- B12 - 150 pmol. Folate 16.8nmol. Vit D 141nmol.

TSH .546.. T3. 546. Free thyroxine 19.5.

[13vc]

I have also been on 100mcg of Levothyroxine for over 10myears , I nearly always have tingleing in my feet and lower legs also my feet get very hot at times and I have to stand in the shower and blast them with really cold water other than that I don't do anything about it.

[Grenard in reply to 13vc]

So it hasnt got any worse, that’s what I’m worried about.

[Vvap]

I have neuropathy too. I don’t think there’s any treatment for it. It’s very uncomfortable.

[helvella Administrator in reply to Vvap]

There are treatments for neuropathy.

cks.nice.org.uk/topics/neur...

The question is rather more whether you would be willing to take any of those medicines. I tried amitriptyline but hated it. And tramadol is unlikely to be prescribed on a long-term basis - and has limited effectiveness. And I'd keep well away from Pregabalin, Gabapentin and Duloxetine - my choice and you might decide otherwise.

Hence I use capsaicin cream. But there are great difficulties getting it prescribed and it is not actually approved for long-term use in all neuropathy. Further, you cannot apply it everywhere - it is horrible if it gets in your eyes or other delicate areas.

[Vvap in reply to helvella]

Thank you for that information. I’ll look at all of those drugs you mentioned - I didn’t think there was anything you could do about it, so I just put up with it. I’ve tried a cold spray, but that only provides temporary relief.

[Grenard in reply to helvella]

Thank you Helvella for all the information

[helvella Administrator in reply to Grenard]

There might, of course, be other approaches. Such as ensuring good levels of B12 and folate. These are the approved approaches to pain alone.

And a pretty sad state that we don't have any medicines which don't have potentially significant side effects. And that is the main reason I rejected all the systemic options and only use capsaicin.

[Grenard in reply to Vvap]

Thanks Vvap, that’s what I thought 😟

[Vvap in reply to Grenard]

See Helvella’s reply above- it seems that there are things we can try.

[humanbean]

 Grenard

 13vc

 Vvap

One cause of neuropathy that has affected me in the past is low levels of vitamin B6.

It isn't straightforward though. Too little vitamin B6 can cause neuropathy but so can too much.

B6 Deficiency : en.wikipedia.org/wiki/Vitam...

B6 Toxicity : en.wikipedia.org/wiki/Megav...

Peripheral Neuropathy : en.wikipedia.org/wiki/Perip...

I took a high dose of B6 (as part of a B Complex) over 10 years ago. My neuropathic pain disappeared after a few weeks. I continued to take the B Complex and all was well for a few more weeks or months. Then the neuropathic pain came back. Since the B Complex was the only thing I was taking at the time it didn't take long to find out that too much B6 can also cause neuropathy. I stopped the B Complex and after a while the pain went away.

I discovered later that the B Complex I had been taking was an awful one. It was called a B-100 product and all the ingredients were present in 100mcg or 100mg quantities. This was far too high a dose of B6. I avoided B Complex for a few years after my overdose of B6, but eventually I bought a much better quality product which contained all the active B vitamins in sensible doses. I haven't had issues with B6 since.

The article on Peripheral Neuropathy I linked above mentions that B1 and B12 deficiency can cause neuropathy too. But very high levels don't, as far as I can find out. B6 Is the only one I've found that can cause neuropathy at both ends of the scale.

These days I wouldn't buy a B Complex product that contained more than 25mg of B6, and I'd be happy with one that contained 10mg for long term use.

Another thing to take into account is the quality of the ingredients as well as the quantity. There are inactive and active versions of B vitamins, and conversion from inactive to active isn't guaranteed in everyone, so buy active vitamins rather than inactive.

jigsawhealth.com/blogs/news...

It isn't just B vitamins that are affected. There are inactive and active versions of vitamin A too, and too high a dose of vitamin A should be avoided, particularly in females who could get pregnant.

organicconsumers.org/differ...

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[silverbelle51]

My back story is I believe I was mis diagnosed with hypothyroid and was on Levo 4 3/4 years right from the get go I developed sx of hyperthyroid when I had experienced essentially great health prior . Within a year I developed low grade hypertension and was placed on a 2 drug combo and to be honest I don't know which of the drugs did more damage . I weaned myself 2017 - 2018, I have done a ton of reading, plus a You Tube site devoted to thyroid health . I have viewed quite a bit . I have come to believe nutritional deficiencies cause most of our dysfunction. I recommend get a small spiral note book I am fond of Mead Brand "Fat Books" and keep record of your dietary intake , your symptoms and research what can possibly cause your symptoms . Truthfully it is trial and error. Myself after trying to balance myself I have decided to give a thyroid nutritional supplement a 2 month try . I have since 2017 been taking Dandelion Root 1 capsule daily to keep my BP in check and dandelion root has a whole lot of other benefits as well. I have been left with a ton of joint and muscle issues from my experience and go to a massage therapist who specializes in Lymph massage ( lots of people who have cancer find this helps them. I don't have cancer, but with all the toxins in food, environment, ect our bodies are impacted and with decreased activity I believe the massage helps). Lymph Massage and low impact exercises might just help you. Best of luck

[Grenard in reply to silverbelle51]

Thank you Silverbelle51