GP won’t refer me?

[Sirian]

I have muscle twitching, burning and tingling, aching and pain. The GP has done loads of blood tests and the specialist GP did neuro examination like checking muscle strength and reflexes etc. They believe it’s vitamin deficiencies, but I had 3 months of supplements and I’m not cured.

I asked for a neurology referral. The GP said she can’t refer me because I don’t have any specific symptoms of any neuro disease like unsteady gait, loss of balance, tremors, abnormal reflexes, vision abnormalities, confusion, etc. I said nerve pain and twitching are neuro symptoms? She said no, they have many causes and most likely anxiety and vitamin deficiencies, I see no symptoms that warrant a neuro referral. And if I do refer you the neurologist will just reject the referral because you have no neuro symptoms.

So what do I do now? The GP can’t fix me but I can’t get referred. They’ve just given me more supplements and offered me meds for anxiety and depression.

Yes folate was checked, it’s fine. Sugar was checked too, it’s not diabetes.

The whole thing came on very suddenly. On 2nd Sept I did a five mile hike (which I did regularly) then I started to feel achy and by 16th Sept I could barely walk. Since then I’ve slowly got better but 40 mins is still the most I can walk.

@Desperate2023 even a private GP will have to refer under the same criteria as an NHS GP, unless they’re referring into a private provider.

Save your money OP and ask the GP about B12 injections. A level of 255 would be ok for most people but might be worth boosting yours and see if it helps. No point taking higher doses orally if you have a malabsorption issue.

I second this

My vit d was fixed over 4 - 6 months

Dya know your vit d number ?

If you take 1000 iu of vit d daily in supplement tablet

And drink actimel which has 1 third of vit d in - should help.

Iron - feretin - daily iron rich cereal , peas , blue berries , kale , chick peas etc often

Agree re vit d and anxiety

Getting my vit d to 79 helped me

This is similar to what happened to me after my Pfizer vaccine. Came in 1 week later.

Def ask for rheumatologist

I went private - 250 gbp

Got a cfs diagnosis

In consultants words
" cfs / fibro - how they are treated is the same "

Nhs here was 6 month wait
4 rheumatologist
Hence private

With cfs - yes i have cfs
But i make extra effort to keep my b12 - vit d and feretin ok
As that all helps

Try taking high dose B12 and folic in addition to what has been suggested. Both are water soluble so if you don't need, the excess is excreted in urine, ie you can't overdose. Deficiency of vitamin B12 and folate does cause the symptoms you have; ask your GP for a blood test specifically for those levels. If they are seriously low a course of injections is required but if not very low, tablets/capsules are effective. In your place, I would buy some now and start straight away, Amazon sells them from reputable brands (Zipvit, Healthspan, etc), and goods arrive quickly. You also need magnesium.

Make sure your diet is varied and healthy, drink lots of water and don't drink alcohol or smoke.

Good luck.

i had similar symptoms a few years ago and a french doctor prescribed a course of magnesium which I thought was ridiculous. It worked though. I now take a course once a year. If nothing else it will help you sleep. They call it nature's sedative.

Four weeks ago before I started the high dose supplements, my Vit D was 39. Normal is 50-175. So I am pretty low. But I’ve been lower in the past and not had these symptoms?

My ferritin is 14. Normal is 15-150. So again very low. Hence why they’ve said they won’t investigate any further until those numbers go up. The GP said taking the supplements for four weeks isn’t enough, they wouldn’t expect me to be fixed yet and they want me to take them for at least 3 months.

Not sure being a man would of made any difference

Are you vegetarian ?

Have they offered a Qfit test // poop test ? - some people with feretin that low have bowel polyps

What iron do u have in your diet

Youd feel better if your iron was 100

Nice guidelines say deficient if under 30

Have peas - fibre rich cereal - blue berries , dried apricots etc daily

I had low feretin - low vit d
And low b12 @ same time

And had bowel polyps etc too

Felt horrendous

Have you ever had a colonoscopy to check for bowel polyps

Or gastroscopy to check for stomach bleedd ?

Need to find cause of low feretin

@Sirian they slapped me with a ‘functional neurological disorder’ diagnosis which basically means ‘there’s nothing wrong with you that we can find, but we accept you have symptoms that bother you’

the tingling did go, but now it’s back. I think it’s due to iron in my case. I need to get my levels back up, but been derailed from that with other issues. It’s on the list though.

@worldwidetravel2017 it’s being a woman. My level was 19. I eat red meat including beef mince and steak at least twice a week, I eat broccoli every day, my diet is varied and healthy. And I still needed a course of iron to get up to 79. It didn’t take long and I’m back down to 27 at my last check. I don’t have heavy periods, I take a multivitamin and i eat well.

being coeliac causes absorption issues so that’ll be OPs problem. I’m not coeliac but I am gluten intolerant. Don’t know if that causes similar issues in that regard, I doubt it as there’s no physical damage done to my body if I’m glutened.

No I’m not vegetarian. No they haven’t offered a poo test. I have coeliac disease which means I don’t absorb vitamins well and I regularly have deficiencies. I’ve never had these symptoms before though, I generally just feel tired and achy if I’m deficient. This is the first time I’ve had burning pain and twitching.

Because I have coeliac I was prioritised for gastroscopy in case there was a stomach problem that was causing my symptoms. I got seen really quickly within a few weeks, but my stomach is fine.

Standard wait on supplements for a second blood test after a prescription is 3 months, have they done this for you?

My friend has an injection every three months for her anaemia, stomach issues like @Sirian . She said she knows when it's due because she goes down hill.

This sounds like my friend, she has a rare complication of coeliacs which attacks the immune system. There is a specialist somewhere (maybe Sheffield?) who is the leading doctor in the condition.

It can take a while for vit supps to correct the deficiency and then for symptoms to stop.

Just because the levels tested is within “normal range” does not mean you are not having symptoms of deficiency.

Check B12 and folate.
Ferratin and full iron study.
E.g. My ferratin of 15/20 was considered normal but I’ve since found that anything under 30 should be treated and anything under 100 should be treated if you have an inflammatory condition.
Not all people can absorb folic acid.
etc etc.

This is why i am paying for private insurance - seen too many friends fobbed off by GPs and not sending for routine tests and turn out to be fatal - 1 friend died - and the other is on palliative care as they didn't investigate her symptoms - ie ct scan/endoscopy and just gave her omeprazole !

Have you ever had a qfit test ?
Bowel polyps cause inflammation / bleeding 4 some
( bleeding - low iron)

I was offered a Qfit test with low iron

Poop test = qfit test was positive

Then had urgent colonoscopy
Had bowel polyps

They’re fairly certain my low iron is a combo of heavy periods and malabsorption from coeliac. Really this has been an ongoing problem for 20 years, every now and again I need supplements because of coeliac.

I’ve been especially struggling with low iron and Vit D for the past two years. They give me supplements, I feel well for a bit, then I slide back into fatigue and get more supplements. But it’s usually just feeling shit, not actual pain or burning or twitching like I have now.

You can get
Better you
Oral iron

Spray direct into your cheek
Take orange juice with it

By passess the gut

Have they considered iron iv ?
I had that when feretin was v low - my body is v bad @ absorbing iron