Achy, pins and needles, terrified!

[Sugarcoatt]

My body has been achy for nine months since I had a very stressful episode. It’s getting worse, my arms and legs are really achy and weak, and I have pins and needles. I have an upset tummy too. GP has noted that I seem very anxious.

Blood tests: My B12 is 271 ng/L, they said this is normal. Borderline low folate of 3.2 ug/L so they gave me pills which aren’t helping. Ferritin 12ug/L, they said normal is 15 so I’m low but they said not low enough to cause symptoms. Iron pills aren’t helping. Vit D was 24 in Feb, they gave me pills which raised it to 77, perhaps it’s fallen again because they gave me more pills.

Terrified I have some sort of muscle or nerve disease like MS or whatever. Has anyone had these symptoms and what caused it?

they said normal is 15 so I’m low but they said not low enough to cause symptoms
Rubbish. Low ferritin causes anxiety for a start. Ferritin needs to be above 70 to support healthy hair growth. Nice guidelines say to treat under 30. I have palpitations and shortness of breath at 22. I managed to get mine up to 35 taking this. It was recommended by a midwife on here as it offers more bioavailability than ferrous fumerate.
https://www.amazon.co.uk/gp/product/B08SKKL9TS/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

B12 levels in this country are set ridiculously low. I thought I had MS when my levels were 170, which is ‘normal’. My symptoms mostly vanished once I started having hydroxocobalamin injections. You can pay at aesthetics places for injections at around £15. You would likely feel loads better if you had a loading dose of b12 injections. I self inject as I order online from Germany, I do have it on prescription as well but top myself up in between. It’s not something you can overdose on but the top end of normal is 750 for our lab, you would feel loads better if yours was higher.

If they have given you another prescription of vitamin D it’s likely low again which can cause horrendous symptoms. Ask the receptionist if you can have a printout of your latest blood test results, or even the last few, that way you will also have the lab reference range for your tests, which is important as not all labs are the same.

Did they test thyroid function?

TSH is 1.43 (normal range 0.3-4.5). So they said I don’t have a thyroid problem.

Hi, did you find out what this was please?

OMG, I could be your twin with symptoms. I’m deeply worried with all sorts of scenarios going through my mind. The only thing I had abnormal on my previous tests was low iron. Hoping and praying that it’s the reason for pins and needles. Next appointment for further blood tests is in two weeks. Two weeks of mental tormenting.

Still no diagnosis. They’ve ruled out literally everything. Not autoimmune. Not MS or neurological. Not thyroid. No rheumatoid inflammation markers. No liver or kidney or bone problems. No blood problems. Ultrasound ruled out any tumours or gall bladder issues, my organs look fine. Endoscopy ruled out digestive issues or cancers.

At this point I still have tingling and burning pain and twitching in my muscles, and I tire easily. My iron and Vit D are technically in the normal range but borderline so they’ve given me pills, but it’s not fixing the problem. Their best guess at this point is viral myositis, which means a virus has attacked my muscles. Possibly Covid or maybe a parvovirus or something.

That folate and ferratin is well below normal.
My folate got flagged at 7.
Ferratin of 12 I definitely “felt it”.
(saw the other day that actually anything below 30 should be treated and under 100 if you have any inflammation (WHO guidance I think).

Upset tummy needs investigating especially with those low folate and ferratin which can point towards a digestive issue - however if your anxiety is causing the upset tummy then it’s a catch 22 sometimes.

I am not saying you should worry, but I would totally see a more competent GP 😬. Or get a second and third opinion.

Thanks for the update. Have you tried magnesium? I'm trying that at the moment along with omega x

One good thing is that the tummy upset has resolved. That was anxiety due to worrying about what was wrong with me. I had some CBT therapy to deal with anxiety and I took up meditation, and the tummy upset went away. It took months because the stress had caused gastritis which needed time to heal. The burning tingling pain in my muscles hasn’t gone away though. It’s incapacitating and they literally have no idea because it doesn’t match any known disease.

Have they retested folate and it has increased?
Because I think about 40% of people can’t absorb folic acid so would need the methylfolate supplement (natural form).

Same with ferritin. Needs to be higher.

They got my folate up to 8 (normal is 4 to 26) but it hasn’t fixed the problem. They tested my magnesium and it’s normal so that isn’t the issue. My iron and Vit D are still borderline so they’ve given me super strength pills just in case that’s the problem.

They’re just totally puzzled. I have burning pain, tingling and twitching but it’s all over not localised, and I have no loss of strength or sensation. They said the fact it’s all over points to a general problem like vitamin deficiency or maybe a virus. I don’t have the blood markers or additional symptoms that would point to any specific disease they know of.

It can take months for nerve damage to be healed.

The pernicious anaemia society on health unlocked is great.
I don’t know if you will be able to see this without registering: https://healthunlocked.com/pasoc/posts/145289648/severe-folate-deficiency

https://healthunlocked.com/pasoc/posts/149803653/blood-results-and-one-mthfr-variant-help-please

should be treating the symptoms not the numbers too.

Sorry - last one.
Nice guidance https://cks.nice.org.uk/topics/anaemia-b12-folate-deficiency/diagnosis/interpreting-investigation-results/

Thanks that’s really helpful. My pain suddenly became so bad in September that I could barely walk, then it slowly started to get better but isn’t going away. So maybe I do have muscle or nerve damage that’s taking time to recover.

Hi there,

Do you have any update ? I also have had similar symtoms for months , pins and needles , twitching etc ? My gp said i have low vit b and d but i have been taking supplements for months now and I still have symtoms ? Hopefully you feel a lot better .

Your ferritin is very very low - different areas have different markers . In my area I was 28 and that was considered low as threshold is 30. It can make you feel really rubbish .

Oops thread from last year - hope all well now