Can anyone help me? GP not helping...

[BlackInk]

(Also posted on Autoimmune board)

Hello, and apologies, because this will be long!

I've been feeling increasingly awful for the past few years with a long and growing list of symptoms. GPs have been almost completely dismissive and unhelpful. Something is definitely wrong but I have no idea what -- am worried about MS or dementia (I'm 46...) but maybe something autoimmune.

Symptoms:
Stomach pain, discomfort and pressure -- no bowel problems
Nausea, sometimes severe
Indigestion, acid, gurgling throat
Twitching and fluttering (all over), occasional weird muscle spasms
Joint pain and stiffness, especially in hands
Weird sore/burning patches of skin
Difficulty thinking and concentrating
Weakness, especially in hands
Clumsiness
Constant feeling of disorientation, like being a bit drunk
Blurred vision
Pins and needles
Head pain and pressure
Exhaustion

Test results:
Hiatus hernia, endoscopy otherwise normal 2 years ago
Chronic anaemia / borderline anaemia
Low B12 (but tests for PA negative)
Positive ANA (but follow up tests for standard autoimmune diseases negative)

I eat a pretty good balanced diet (when I can eat, gradually loosing weight) and don't have any major vices! Was totally healthy before all this started, but have a strong family history of autoimmune disease.

My GP thinks this is all in my head and has tried to push antidepressants on numerous occasions. I'm just so very tired of feeling awful all the time. I feel like a shell of myself. I was given 5 B12 injections just over a year ago. Since then levels have been just inside normal range (despite taking high strength supplements on and off) so GP says no further treatment.

Grasping at straws here, but does anyone have any idea what could be going on?

Given my age, I should say that it's not menopause related. I had a sudden complete menopause 4 or 5 years ago and HRT hasn't alleviated any symptoms!

Thank you smile :)

Symptoms of B12 deficiency don't normally go away until the level is over 300, so I'd say you need to increase and maintain your level higher than it has been. Have you had your ferritin checked?

I don't seem to be able to get my B12 much above 200, even with injections or high-dose supplements. I think I will try a spray if I don't get anywhere with the GP. And will take some vit D too.

It's possible there might be a psychological element, but the symptoms come out of the blue and are most definitely real/physical.

I will do some more reading and thinking based on all your suggestions.

Thank you all :)

Vit D can take 2-3 years to get up to the proper level if it's low

B12 can't be tested effectively once supplementation has started - it would be very odd to get a level of less than 500 within 3-4 months of an injection (but it's been a while since I did my research)

I've had similar symptoms from low vit d and ferritin. I'm a month ish into treatment and feeling tons better.

I have all those symptoms. Had numerous tests. Diagnosed with fibromyalgia,

Another one saying B12. Once you have started injections you should be on them for life - and you B12 should always be off the high end of the scale. IE above 2000. The normal range is different in different areas and in mine the lower end is 210, so you should definitely be on injections for life.

For many people the NHS usual routine of 1 injection every three months is nothing like enough and it is possible to buy it from abroad (I get mine from Germany so it isn't suspect) and inject myself every month. I always know if I forget as I start get the tingly feeling on the back of my left shoulder. (it's only about £60 for 100 vials and you can get needles and syringes from Amazon)

It has transformed my life, far more than the 3 monthly ones the NHS will give.

You do need to do your own research though.

My fibromyalgia and Chronic Fatigue are 'much more manageable' since I started B12/D but I also take methyl folate, potassium, Vit K, Magnesium and ubiquinol as they are complimentary t the B12 & D

Your GP is an ignorant, negligent arse & is putting your life at risk.

B12 deficiency needs treatment for life & frequent injections if you have neurological symptoms. None of the tests are 100% reliable, so you probably do have PA.

You also NEED to take other supplements with your B12 injections or they cannot work properly.

I've been through this 4 times over & recognised you as B12 deficient from your symptoms before even spotting your diagnosis & poor treatment of that.

This link below explains it al & has links to NICE guidelines, NEQUAS alert etc that back up that you have been poorly treat & your GP is negligent. There is a Facebook group in the links that I highly recommend as they were a godsend to us with this same fight for treatment.

Don't let them fob you off further. My DB had a stroke whilst this GP was withholding his B12 treatment, it's is THAT serious

https://www.b12deficiency.info/signs-and-symptoms/

Thank you @RockinHippy -- I just don't understand why they won't treat my b12 deficiency as per guidelines, even just to see whether that's the thing causing my symptoms. I know it's not an expensive treatment, but GP is so dismissive. He said in the same breath that my symptoms exactly match those of B12 deficiency and that he doesn't believe my symptoms to be caused by B12 deficiency. They seem to have me marked as a hypochondriac and I really can't understand it. I literally never went to the doctor's before all this, and I literally feel like I'm fading away.
I'll have a good look at your link. The area I live in also has new guidelines, and my treatment hasn't followed the recommended pathway:
g-care.glos.nhs.uk/pathway/867/resource/11?fbclid=IwAR2zxYDwYBqKdO-ZEtCKQ6viS8Kw2cwCE_wA7jvGntlKFDKgY9yzuxDV78k
Thanks again!

I feel for you as I've been through this, only in my own case I took my doctors word for it that I didn't have PA as I knew no better, even though I know it's rife in my family. I now realise that the anaemia they kept me in hospital for after the birth of my DD, was actually PA, but they didn't treat me & then pretty much treat me as you describe, until I was eventually fobbed off with a Fibromyalgia diagnosis. Doctors get 4 hours training in total fir all vitamins, hence the ignorance.

I'm registered disabled as a direct result of this lack of & delay in treatment & it badly affected my DD too. I had to study this stuff for years to be able to argue DDs case with ignorant, arrogant doctors, I was even accused of munchausens by proxy by one so called specialist, so unfortunately I understand too well how it can go, but they are WRONG & the law is on your side. DDs injections plus co factors got her out of a wheelchair in under 2 weeks.

If you look on the site, there are letter templates to your surgery. Send a letter to the practice manager citing your GPS negligence & the risk of harm it puts you at & do not hold back, have confidence that you are right & they are wrong, include NICE guideline & NEQUAS alert print outs as evidence of the negligence, next step would be an official complaint to PALs.

We had the additional problems of DDs blood results looking normal pre treatment, but NICE recognises that the tests are unreliable & we eventually won that fight too

& definitely join the group, they were a godsend to us, plus they have details on how to buy supplies & treat yourself too, as very few of us can manage on the NHS 3 monthly jabs

Good luck

Ivejust managed to read your link. That's a worry in itself as it contradicts NICE guidelines & not in a good way. Low normal should trigger more in-depth testing. 200 is the low upend of range, not 180 & that's just a start😏 NICE & NEQUAS override this though

Hi

Firstly I have IBS and chronic fatigue syndrome and have some similar symptoms although not completely identical. It sounds to me like your diet whilst being good is not optimum for you as in perhaps you might have intolerances or need higher levels of some vitamins because you're body finds it hard to absorb them. I would consider seeing a nutritionalist to see if they have any advice on how to help your body absorb nutrients better and see if there's any tweaks to your diet which could help you.

Secondly, psychological trauma does not been that the symptoms are not physical. There's been a lot of research to show that trauma can cause neurological disorders and autoimmune disorders. Think of it as physical damage caused by a psychological stress. If you think that you have experienced trauma I would definitely recommend counseling/psychotherapy but even with no issues counselling or CBT psychotherapy can really help your body cope better with physical symptoms especially pain, digestive issues and skin problems.

This firm might be useful to fill in & add to your complaint. It helped get treatment for my DD...

Napmum I suggest you read my link too, especially the frequent misdiagnosis page. You'll see it fits you too

These may be useful too. NEQUAS is a warning that GPS etc are meant to follow as urgent. The other is a screenshot from the NHS page on B12 deficiency. This is my DDs diagnosis as her blood results are in range, though we know it is PA as I have that & DHs sister does too, so genetically, she's more likely to have PA than not...

Have they checked your calcium?

Have you had your thyroid tested?

Standard first-line thyroid tests (TSH?) was normal but I can't remember what it was. Right at the bottom of the range I think, which I seem to remember is a good thing. It was a couple of years ago and I can't find it on my online notes.

Calcium was tested around the same time, see pic.

I would say under active thyroid. Call the surgery and ask for your results from the test or ask for a retest. In the UK the TSH is normal if between 0.00 and 4.5. In reality unless mine was under 2 I would feel like crap.
Crap would be double vision, aches, exhaustion, hair loss, stomach and head problems, dry skin with sore patches.
I worked with a lady who had every symptom but her TSH was 4.5 so her GP wouldn't medicate. She persuaded him for a trial 3 months and it's made a huge difference to her life.

My THS was 0.7 last time it was tested, and 0.8 a couple of years ago. That's too low to be a problem isn't it? I'm also struggling to eat enough to maintain a healthy weight, and I think under active thyroid leads to weight gain?

@BlackInk did your symptoms improved after the injections even if temporarily. I had the same symptoms and some more and my level was 71 when tested. Being a vegetarian it is very difficult to maintain correct b12 deficiency by diet. You said you are taking high value supplement so how high is it? After 5 injections my b12 level was around 500. The doctor still asked me to take 100-150 microgram supplement daily and I still get eye spasm sometimes. Some damages cannot be reversed.
Then there are medications which depletes your b12 like Metformin, birth control pills, hrt etc, so if you are already at low levels you keep getting worse.
B12 deficiency is a real problem and it does decrease your quality of life. I hope you are feeling better soon.

I’ve never ever dieted or calorie counted

Are you losing the weight without trying? If so I would mention to the dr as this can be an important symptom.

Change surgeries or see a different GP if you feel you're being dismissed.

In the 2/3 years before I was diagnosed with Graves (overactive thyroid). I had lots of episodes of indigestion/gastritis - had a suspected ulcer at one point. Exhaustion, sore patches on legs, oftenbfeeling a bit "unbalanced" re needing food and slightly disconnected.

Your TSH suggests that direction rather than hypo.

Thyroid & B12 deficiency are linked, so it makes sense that you could have both. Before my DD & I were diagnosed with PA & Functional B12 Deficiency, both of our thyroid results were off in a similar way. It corrected itself with B12 injections & cofactor vitamins. Liver results can be affected too.