new to peripheral neuropathy

[Caradoc1a]

I recently developed symptoms of this . This is not diagnosed. I am waiting to hear from my Endo as he ordered the blood tests and my GP says they can't intervene as the consultant ordered tests for thyroid and vitamins.

I fulfil the symptoms of:

Sensory neuropathy: pins & needles in feet; sharp burning or sharp pain in feet; impaired balance resulting from less ability to tell the position of my feet

Motor neuropathy: muscle weakness and cramp

Autonomic neuropathy: nausea; rapid heartbeats (last night 120bpm whilst trying to sleep); night sweats

Mono neuropathy: carpel tunnel symptoms ( which started in June)

When I looked at the causes of this condition on the NHS website, two things resonated with me: hypothyroidism and Vit B12 deficiency.

The NHS website Vit B12 deficiency symptoms which relate to me are:

• Loss of appetite

• Feeling nauseous at times

• Rapid heartbeats and palpitations

• Vision issues – I have had double vision on and off since July. I saw the optician who thought it may be ocular migraines

• Tiredness and weakness

• Brain fog and memory issues

• Balance and coordination problems - I keep dropping things and feel dizzy at times

• Pins and needles starting in feet and travelling up the body

On further research with the Thyroid UK forum on this platform, I learnt that hypoactive thyroid can lead to reduced stomach acid (hypochlorhydria) which inhibits the absorption of Vit B12 from food. (I have an excellent diet) It can also lead to indigestion, which I am also experiencing recently.

Anyway, I have taken high dose VitB12 sublingually for 12 days now and the symptoms faded and I was able to walk 3.5 k on Friday with no problem or after effects. I tried a experimental bike ride of 2K (!) on Saturday and that night in bed I had burning in legs and foot/ankle pain again, balance problems, rapid h/beats (120bpm), anxiety dreams. Is this to do with riding my bike for 10mins? Seems odd...

Any thoughts would be helpful.

Thanks

[Blackknight1989]

No most likely it has more to do with self-diagnosis and self-medicating instead of discussing with the doctor. From the Mayo Clinic in the US:

The recommended daily amount of vitamin B-12 for adults is 2.4 micrograms (mcg). Most people can get enough vitamin B-12 in the foods they eat. But people who follow a vegetarian or vegan diet should eat nutritional yeast and other foods fortified with vitamin B-12. Or they can take a low-dose multivitamin that includes 2.4 mcg of vitamin B-12. Higher doses are suggested only in those with a vitamin B-12 deficiency.

Link: mayoclinic.org/drugs-supple...

Maybe go back and have the initial discussion with the doctor as opposed to self-diagnosis?!??

[Caradoc1a in reply to Blackknight1989]

Thanks - I have now discussed with GP and will also discuss with the Endo next week as he was the one who ordered the tests after I wrote to him about my symptoms. Thyroid UK forum on this platform suggested self medicating in the meantime, due to the danger of neuropathy symptoms, whilst waiting for an appointment. As the GP said to me, there is no upper limit for B12 so no problem with using it, even without a confirmed diagnosis. Indeed that is what he has recommended to see if the symptoms abate.

This not a dietary phenomenon as I am neither vegan nor veggy and have a varied and nutritious range of food cooked from scratch. The most obvious (and only significant) variable in the past 10 months is having RAI for hyperactive thyroid, leading to underactive thyroid and the the resulting risk of low stomach acid and B12 absorption issues.

I avoid multi vits as they are not seen as useful for underactive thyroid - and they can be counterproductive. Instead, I take specific relevant vits/minerals.

[Blackknight1989 in reply to Caradoc1a]

Okay but I wasn’t giving my OPINION I was giving the Mayo Clinic’s opinion…If you now trust your care team that’s great and I wish you the best.

[Caradoc1a in reply to Blackknight1989]

Thanks - I appreciate your comments. I thought some context would be useful.

[Caradoc1a in reply to Blackknight1989]

For me, it's not necessarily about trust as such, it's about health decisions made within a shrinking public health budget. Health practitioners are limited in thier choice/offer at times. It's useful to be aware of this pressure in terms of one's own health choices.

[Esperanto]

When you engage in self-diagnosis, the same conditions apply that your doctors should also meet, namely testing your vitamin and mineral levels. Without these tests, which are certainly important for B12 and B6 (+B2) in the case of neuropathy, it is advisable to avoid taking supplements beforehand, as it can even be risky. An overdose of B6 can cause effects similar to those of a deficiency... First measure, then know!

🍀

[Caradoc1a in reply to Esperanto]

Thanks. I appreciate the concern. I was using information from NICE 2024 guidelines to guide my interim actions, having had results for serum b12 and folate blood tests.

[Esperanto in reply to Caradoc1a]

That is indeed the standard procedure. Were your values indeed too low? However, when there is a suspicion of neuropathy, it is even more important to measure your B6 levels. However this is not standard practice and often does not happen for that reason. If my neurologist had done this, I could have prevented a lot of irreversible damage….

[Caradoc1a in reply to Esperanto]

Thank you for this information. I will include this in my discussion with the consultant.

[Caradoc1a in reply to Esperanto]

Absolutely agree re knowing upper limits of any drug or supplement.