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.

Have you been ill in the last 2 years ?
A rheumatologist would be a good shout

Waz your parathyroid checked?

*edited to add I’ve just seen now that you are in fact a Celiac, so what I’ve written below definitely stands. In fact you may not just have intolerances to the standard celiac issues but there may be other intolerances at play which are flaring up the symptoms. Fatigue exhaustion aches etc could be common in Celiac disease unfortunately. I would begin monitoring your diet and keeping a food diary… (I’ve a friend who has had similar). Additionally go and find a celiac specialist to speak to. Unfortunately if you have struggled with malabsorption for some time this can place a stress on the bones (porential osteoporosis or other such issues) and you may want to check on that, particularly if you are around menopause age. I’m by no means trying to diagnose you, and I could be totally wrong as I am not a doctor but study in a science related field (about the body).

Prev note to say: I’ve literally just written a very very long and boring article on this (not published) however, just because we take certain vitamins doesn’t mean our body absorbs them. There are various things as part of our internal biology (as well as our habits and other things that we put in our body) that block the absorption of vitamins, for example. So you may well have a significant deficiency which isn’t getting better for that reason.

Certain disorders such as Chron’s and Celiac’s disease can affect absorption of Vitamin D and Iron, a few other examples (that are not disease related) ;

Inhibitors of iron absorption include phytate, which is a compound found in plant-based diets that demonstrate a dose-dependent effect on iron absorption. Polyphenols are found in black and herbal tea, coffee, wine, legumes, cereals, fruit, and vegetables and have been demonstrated to inhibit iron absorption. Phytates and fibres found in wholegrains such as bran can reduce the absorption of iron and other minerals. Inadequate vitamin A in your diet could lead to iron deficiency because vitamin A helps to release stored iron. Calcium and phosphorus reduce the absorption of plant-sourced (non-haem) iron.

That's depressing, most drinks and many foods.

Ah no, don’t worry most polyphenols are good for us, and it’s the handful that if over consumed can aggravate issues or cause malabsorption. Everything in moderation. This is why certain restrictive diets aren’t great because you can end up overeating things that are healthy in moderation (but not so healthy when a primary food source). That, and some people already have intolerances and differing degrees of reactions within their own body, which mean certain foods can trigger inflammation and other issues.

This explains it better:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6160559/

Apparently my low ferritin is caused by my heavy periods… except I don’t have heavy periods and non of the criteria my gp text me match my experience of periods yet clearly he knows my periods better than me. Refuses to refer me for further investigations because it’s my period and I refuse the coil.

I refuse the coil because I was raped years ago and the thought is horrific for me. If I genuinely thought it would help then I would consider it but putting myself through that trauma when I’m not convinced it’ll help is not happening.

This sounds very frustrating, OP, but I don’t think it is clear yet what specialist consultant you need. Although, for example, a neurologist and a rheumatologist can do tests that might lead to a cross referral, time would be wasted. Best to get it right from the beginning.

In addition to the possibilities given here the fact that you are a hiker leads me to wonder about Lyme disease or similar? Nerve damage is a key symptom.

PS Best wishes. This sounds incredibly frustrating

@poetryandwine I did suggest Lyme to my doctor but he said I don’t have the symptoms 🤷‍♀️

So your treatment plan is to ensure your vit d and iron gets to normal levels to see if this solves the problem?

This seems reasonable no?

The issue might be how or whether your body is absorbing the supplements, is there a concern that they might be in the wrong format? Do you need them in spray form perhaps?

How long have you been on the supplements, how long between blood tests and what was the increase in your levels, if any?

Well, OP, DH was eventually diagnosed by an excellent neuro at a specialist university hospital with an obscure autoimmune disease. (Since beginning treatment he is doing very well). She did blood panel after blood panel. His symptoms were not so different from yours and he had no memory of tick exposure or anything, but Lyme was one of the final contenders.

But he was referred to Neuro in the first place because it was clear he had neurological damage. That’s the contrast with your situation. Arrrrggggghhhhhhh

They have not been able to fix the problem themselves so they should refer!
I'm so glad I live in a country with direct access to specialists. This is ridiculous.

Are you having b12 injections?

My feretin has been found to be only 82

Lowest its been since april...

I have CFS

I have gallstones - ( can effect feretin )

I took a short walk this eve and struggled

Need to convince them to give me another iron iv

I paid for my daughter to see a neurologist, it cost me £200. The G.Ps we’re good though, they actually got knocked back by neurology, they were told my daughter didn’t fit the NHS criteria.

I have M.S and she was showing some strange neurological symptoms. I was originally diagnosed incorrectly by a locom Dr of having M.E, this went on for 7 years before the true illness was recognised. I wasn’t prepared for my daughter to suffer the same. An MRI was required , this was done by the NHS. Low and behold she has a benign tumour that they will monitor yearly with MRI’s, if it keeps growing it will have to come out.

She was also diagnosed with fibromyalgia several years ago by a G.P, when she asked who specialises in this the G.P said she does. Whilst the neuro surgeon was doing some reflex testing he discovered that one side was weaker, fibromyalgia doesn’t work like that . He disagrees with the Drs diagnosis, is shocked she wasn’t referred to anyone and has diagnosed a condition called Functional Neurological Disorder, I’ve never heard of it. He’s referring her to the neurologists.

If you can afford a private consultation I’d highly recommended it. Some of them don’t require a letter from your G.P with background information. Hope you’re successful getting it sorted, wishing you all the best 😊

See a private neurologist

B12 blood tests are not accurate. Burning and tingling are signs of B12 deficiency which is very common in. Ooeliacs.

If it came on suddenly it doesn't sound like a neuro issue. They aren't referring you as you aren't meeting referral guidelines, if they put you on a waiting list they are making it longer for someone who does meet them

Read the book mad Diet available on Amazon. Kindle is cheap as chips. You will learn everything you need to know about nutrition and supplements. Do your research and arm yourself! Good luck.

I have had the exact same symptoms as you for years and years, along with other symptoms. It wasn't until I got one specific worrying symptom where they sent me straight off to neuro. To be fair they were really good, rushed me in for 2 mris, CT scan, lumbar puncture , every test possible and got the all clear. When I mentioned all symptoms in general, neuro weren't in the least bit concerned about the symptoms you have described. Unless it's something that's literally happening all the time it seems to be classed as normal. There are certain things that will flag up and being a symptom of something bad, and others that obviously aren't.

My various neurological symptoms are still a mystery, but at least I know there's nothing sinister going on x

@miniegg3 thank you, that’s really reassuring.

Yes, especially the so-called 'active' B12 tests. They aren't worth the paper they're printed on. There's also 'paradoxical' B12 deficiency where levels of B12 appear normal, but it's non-functional due to Vitamin B2 deficiency. It's a complex subject.

While your B12 is at the low range of normal, it could still be low for your body. Many countries have higher threshold values; in addition, they recognize that a person can be within the threshold but still symptomatic if a deficiency. They treat the symptoms eg in the USA.

I have had a normal B12 result; normal but just hovering over the low end. The GP recommended tablets, starting at a higher dose then bringing it down after two weeks to a normal dose. I’m not saying this will work for you but it was beneficial for me. They treated my symptoms and not the number. Among my symptoms were nausea, headaches, fatigue, breathlessness, numbness, racing heart, muscular pain and weakness, brain fog, apathy.

B12 is water soluble so your body will get rid of what you don’t use. I think there’s nothing to lose by trying to up your levels.

I hope you’re able to get things under control and feel better