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 :)

What's your iron level currently and how do you get your iron? A vegetarian diet has to be planned very carefully to get the right amount of iron as haem iron is so much more easily absorbed.
For example you can eat 1 black pudding to get your RDA or 3 whole bags of Spinach!
I raise iron because some of your symptoms sounded a lot like me when I was anaemic. I felt bloody awful

Thanks again everyone. I'm building up the courage to go back to my GP and raise some of the points you've all suggested:

Cortisol
Full thyroid tests
Vitamin D
Referral to a specialist
Proper treatment for low B12

My ferritin last tested about 4 months ago was 15 (range 10-300). It is always on the low side and every now and then dips below. I eat lots of greens, peas, beans, lentils, grains, seeds, nuts, etc. and some fortified cereals. When I'm not taking prescribed iron or B12 supplements I take a good multivitamin, which contains both. I used to have heavy periods, but those stopped about 4 years ago (sudden early menopause).
GP didn't test ferritin when I had blood tests done last week, but haematocrits have come back low at 36. Rest of the FBC is all just within normal range and he has marked the results as 'normal, no further action'.

I've been taking a timed release 1000ug B12 capsule once a day for 14 weeks, and blood test came back at 192 (normal range here starts at 180). I eat lots of dairy, plus eggs, Marmite and fortified cereal -- I get over the RDA for B12 through diet.

I'm losing weight without trying, yes. I'm just over 8 stone and 5ft 6in so definitely look a bit too thin. Lost about a stone and a half over 2 years. It's hard to eat a perfect diet because I feel so ill so often. B12 is easy for me though because I can stomach buttered Marmite toast and milky tea if nothing else.

I really would ask about doing a blood test for coeliac disease in the context of losing weight so easily and having obvious malabsorption

Oh, and based on my DH being diagnosed yesterday, might be worth asking for an H Pylori test (its a simple poo test) which could also explain the nausea/indigestion etc

Echoing what @twighlightsparkly said, I have Sarcoidosis, and this sounds very familiar

182 B12 is officially low, whether your HCS agree or not they have to treat you with injections or they are officially negligent & yiu coukd sue them if you suffer worsened health due to their lack of treatment

192 serum B12 when you are on supplements will mean that your active B12 will actually be very low, probably dangerously so. Supplements will put blood results up, but not fix a deficiency as it's not going to be active B12 as you have an absorption problem & you're clearly not able to process inactive B12 into the active B12 your body needs to heal. Supplements usually put the test results up so that a deficiency is missed. The fact you are still low on supplements suggests something is very wrong with your B12 metabolism

B12 & Iron work together & low B12 often causes low iron.

Losing weight can be a symptom, my DD was skeletal before we managed to persuade doctors to give her B12 injections

It's really not difficult to get plenty of iron or B12 from a vegetarian diet if you are healthy & eat well. A vegan diet would be different though.

I agree with those tests but will add

Have you been tested for Heliobacter Pylori? I'd add that to your list.

I'd also look into thiamine & B6 deficiency too, B12, D & these often do go hand in hand due to inability to absorb properly

192!!

Just checking back in to update. I went back to see a GP and gave her a full written list of my symptoms, things tested so far and things I would like them to consider.

She was a bit flummoxed and left it that she would speak to a senior GP and get back to me.

She called me back today and said they are now happy to give me B12 injections (5 loading then 1 every 3 months for a year). She said they will retest B12 and review how I'm feeling 6 to 8 weeks after the loading injections.

Whilst in some ways I'm relieved that they're willing to treat my low B12, and hopeful that it will help with some of my symptoms, I still feel frustrated and at a loss.

The treatment offered is still not following NICE and BNF and local guidelines (to continue loading dose until no further improvement of neurological symptoms, and not to retest B12 once on injections) and I doubt that B12 will help with my stomach symptoms.

We shall see. All I can do is take the treatment offered and see whether I get better or continue to get worse...