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Can anyone help me? GP not helping...

(59 Posts)
BlackInk Mon 27-Jan-20 16:42:45

(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 smile

OP’s posts: |
seekingwaxwings Mon 27-Jan-20 16:47:14

Have you tried an auto immune focussed diet? I can personally attest to the efficacy of The Wahls Protocol.

Btw I have MS and your symptoms sound nothing like that.

notangelinajolie Mon 27-Jan-20 16:55:35

I guess B12. How low? Are you in the UK?
Because in the UK the range for acceptable B12 level is very low. Treatment may not be recommended where as in other countries it would.

BlackInk Mon 27-Jan-20 16:58:22

Thank you for replying @seekingwaxwings.

I'm vegetarian since childhood, so I don't think that diet would be possible. I'm also reluctant to cut out anything as all my nutrient levels are low and I'm also borderline underweight. I do eat a decent diet, including dairy, eggs and good sources of protein and iron. Probably too much sugar though!

A lot of my symptoms are listed on the MS society website though -- pins and needles, twitching, spasms, weakness, tiredness, poor focus, dropping things, tripping up...

OP’s posts: |
CMOTDibbler Mon 27-Jan-20 17:01:00

Have you ever been tested for coeliac disease? Being chronically anaemic and deficient in B12 is pretty characteristic, and my main symptom before I was diagnosed was joint pain

BlackInk Mon 27-Jan-20 17:02:45

@notangelinajolie I've been kind of hoping it's low B12 too, but GP is adamant it isn't.

My levels over the past few years have been:
168
160 (prescribed oral supplements for 3 months)
122 (5 loading injections given)
218
208 (prescribed oral supplements for 3 months)
192

The normal range here starts at 180.

OP’s posts: |
BlackInk Mon 27-Jan-20 17:03:54

@CMOTDibbler Yes, I think they took a biopsy when I had an endoscopy a couple of years ago.

OP’s posts: |
PlanDeRaccordement Mon 27-Jan-20 17:04:03

The hiatal hernia will cause many digestion problems and acid reflux.

You said you are on HRT...much of what you list are known side effects of HRT especially the digestive issues, spasms/cramps/pins needles, feeling achy.

Your anemia will cause the tiredness, brain fog, dizziness/clumsiness...so are you taking any iron supplements?

The skin patches sound like simple eczema I’d do the usual food journal and checking ingredients of all washing soaps ingredients. Etc.

BlackInk Mon 27-Jan-20 17:08:38

@PlanDeRaccordement My GP said that the HH was small and wouldn't be causing any symptoms, and I had pretty much all of the symptoms before I tried HRT, although they are gradually getting worse.

GP prescribes iron every time my iron dips below normal range. It makes my stomach much worse and gives me hideous black diarrhoea! It always come back up just into normal range then falls again.

The sore/burning skin isn't eczema. There's no rash at all. My skin feels sunburnt but there's nothing to see at all.

OP’s posts: |
PlanDeRaccordement Mon 27-Jan-20 17:08:43

As you are a vegetarian+ anemic+ underweight, I would double check your diet. You most probably are not getting enough iron, B12 or essential amino acids. Feeling awful can definitely be caused by a nutrient deficient diet even if you have enough calories, grams of fat, carbs and protein.
Would the GP consider referring you to a nutritionist?

BlackInk Mon 27-Jan-20 17:13:02

@PlanDeRaccordement

I'm honestly not being difficult, but am sure I'm eating well. I eat well over the RDA for B12 in dairy, eggs and supplemented foods like cereal and yeast extract. I eat a full range of protein and plenty of sources of iron.

I've never ever dieted or calorie counted. My diet is varied and I also take a decent multivitamin (when I'm not taking prescribed supplements).

I've tried, and failed, to make any connection between stomach symptoms and what I eat. Although I definitely feel worse when I eat more.

OP’s posts: |
PlanDeRaccordement Mon 27-Jan-20 17:15:20

The thing with HH is that it is a leakage of stomach acid into the gut. It may be small, but over time that stomach acid can eat away at the lining of the intestine, causing various symptoms. I think the GP was most probably saying you would not get the major symptoms of a HH which often result in hospital stays when a large leak occurs or when necrosis sets into the intestine and some of it must be surgically removed. This doesn’t mean, that you can have a small HH with zero symptoms. It’s just the mild ones you are describing.

But, HRT also causes digestive issues and so it may be a bit of both.
Inadequate diet will cause digestive issues as well too. The iron supplements you are prescribed are very high dose and will cause the black stool and stomach cramps. You could consider a multivitamin with say 50% of your daily iron needs built in. It would be a lower dose and if taken with food should go easier on your stomach and avoid diarreha.

PlanDeRaccordement Mon 27-Jan-20 17:21:01

No worries, I know you’re not being difficult. I think your GP is the one being difficult tbh.

I think I eat well too, but not sure what a nutritionist would say if they saw a food journal! Lol. It was just a thought to get a professional eye on the diet and see if it might contribute.

Ah, I see you already take a multivitamin.
So assuming you are eating well, then the issue could be absorption of nutrients. Could GP refer you to a gastroenterologist to check up on the HH but also to see if anything else going on?

AlunWynsKnee Mon 27-Jan-20 17:24:20

The burning skin patches was one of my first MS symptoms in retrospect. That's not to say yours is though. B12 was definitely one potential cause.

Inthemane Mon 27-Jan-20 17:27:24

Can you ask for an investigation into whether it could be lupus - can be difficult to diagnose and the rash plus anaemia plus positive ANA suggests it could be. It can be difficult to diagnose so don't let your GP fob you off by suggesting it's in your head.

www.lupus.org/resources/common-symptoms-of-lupus

I'm also wondering why, with the joint pain and stiffness, you haven't had a joint aspiration or X-ray. Blood tests cannot diagnose all forms of arthritis. Ask for a referral to a rheumatologist.

Hope you get to the bottom of this and start feeling better.

Caramel78 Mon 27-Jan-20 17:29:01

I have the same symptoms and I’m anemic. It’s a minefield trying to get better as I also have IBS

BackInTime Mon 27-Jan-20 17:29:35

Symptoms sound very much like Coeliac was to me. You mentioned that biopsy and endoscopy was a few years ago, perhaps signs/ were not clear then if in the early stages. Some people have symptoms for years that are put down to other causes. Have you had a blood test for coeliac disease or more recent investigations? Do you have any family members that have coeliac?

notangelinajolie Mon 27-Jan-20 17:32:43

My B12 was lower than yours so after the initial booster doses of B12 I'm on injections every 3 months. I would say though that yours are low enough for you to feel the way you do. And think you should keep asking about this.

I had - and still have some of the same symptoms as you. Exhaustion, dizzy, vertigo, coordination, clumsy, balance, fuzzy, concentration, sickness, wooshing noise in ears, weak everything and pins and needles etc etc and now I'm on my injections my GP insists I'm now fine hmm

I'm surprised you were only given the B12 shots once. Surely the levels will fall again if you aren't topped up?

I'm still convinced my problems are B12 though and think I need monthly injections rather than every 3. I'm having some more blood tests next week..

Good luck OP - and I'm with you on the antidepressants thing. My GP has suggested them too. angry

twighlightsparkly Mon 27-Jan-20 18:00:10

Have a look into an autoimmune disease called Sarcoidosis. I had it years ago and lots of those symptoms sound familiar! It's rare and very hard to diagnose and there are different types, ie different areas of the body it effects such as neuro, skin, lungs etc. Feel free to message me if you want any more info. Good Luck x

Apileofballyhoo Mon 27-Jan-20 18:12:11

Sounds like B12 and coeliac to me, but they are the two I have experience of so the symptoms would be more familiar to me.

I also tested negative for PA. Had 5 loading shots December 2018 and have had shots every 12 weeks since. GP put it down to being vegetarian even though I haven't been vegetarian for a few years, it's still in my file, and he's fixated on that being the reason.

Annoying power hungry receptionist asked me to hang on for another week last June as my 3 months wasn't up and I nearly died of the tiredness - only to be informed by the nurse that the shots are 12 weekly, not 3 months.

I couldn't get an appointment until 3 days late in December and I was so nauseous and thought I had a bug. I had been feeling slightly nauseous prior to that. Also exhausted. I was telling the nurse and she said some people come in for their shots after 10 weeks because they know they need it! I felt fine once I was dosed up again.

My GP said he always does a year of shots when someone has been low, PA or no PA, to establish normal health for the person/eliminate B12 as an issue. I'm due my annual checkup now so I hope he doesn't decide I'm fine without my precious shots!

Did you feel in any way better after yours? B12 is a funny thing - you should have been getting enough from your diet but obviously you can't process it. This makes me wonder if oral supplements are of any value to you.

My DM and DSis also get regular B12 shots (DM since I had mine) and DSis for years, but I never asked her if she has PA. Neither of them are or were vegetarian. DM could be down to age.

Gluten- you could just eliminate it yourself and see if you feel better. If you do you should do a strict gluten free diet, avoiding cross contamination and so on, because you may not find out if it's really a problem or not otherwise. If it's a problem and you are still ingesting small amounts you might never feel better. You could get blood tested but it doesn't always show in blood tests. May as well blood test anyway though. If you do feel better you can reintroduce it and see if you have a reaction.

I hope you get sorted.

Dontdisturbmenow Mon 27-Jan-20 18:33:45

I had all these symptoms with a combination of low b12 but higher than yours and the perimenopause.

I am much better now with injections every 6 weeks ( after a long period of loading doses) and being totally menopausal.

BlackInk Mon 27-Jan-20 19:16:43

Thanks everyone for your replies -- I'll have a good read and do some more googling!

OP’s posts: |
KatyMac Mon 27-Jan-20 19:22:28

B12 is higher in other countries minimum levels between 500 & 1200 - I only feel marginally well over about 800 - spray from holland & barratt then it doesn't have to be digested
Vit D as well - large doses - check online and use the spray from H&B again

Between them they would account for:

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

jamdhanihash Mon 27-Jan-20 19:57:03

I read 'the body keeps the score' by Bessel van der kolk as one of my team was signed off with a wide variety physical symptoms similar to yours and also itching. He was told it was psychological so I read the book to understand this better. I realised I might be suffering from trauma. To test this, I did some psychotherapy and my physical symptoms disappeared. I don't know if he investigated the psychological route so it's only half a story, but thought it might help.

Egghead68 Mon 27-Jan-20 20:54:04

You could see whether you think anything on this website fits:
Www.neurosymptoms.org

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