Just checking I am not going mad. Diagnosed 1 year ago after collapsing with whole body cramp, fatigue +++, eyesight juddering, amongst others. Nothing found on scans mri brain and spine but am a bit suspicious as they didn’t see vertebral loss of height diagnosed 6 years previously. Heart ok on angiogram ct, osteoporosis diagnosed b12 and d deficiency low iron and folate. Did my own thyroid tests as my tsh was nearly 4 and my t3 is low but trial of levothyroxine made me so ill I haven’t pursued. I still can’t make it through a whole day without flaking out. My eyesight is awful and still very wobbly first thing chronic headache and the very first symptom of severe localised back pain is still there and increases with the fatigue and headaches. I get weird blood clots in my hands and feet, I have all the symptoms of anaemia, tachycardia breathless clammy and sick. I’m also extremely irritable and miserable but not clinically depressed. I have been to homeopath, chiropractor, I’m on all the supplements as well as self injecting up to 3 times a week but I have seen no real improvement. My gp says she is baffled and doesn’t know where to send me next. I have an orthopaedic appointment for the muscle weakness in my left arm but I imagine it’s part of the overall picture. I tested myself for h. Pylori- negative and for low stomach acid- positive. I tried oral b12 and got worse so although I am negative for if antibodies it seems I don’t absorb b12.
If I were to see a specialist would it be haematology, gastroenterologist or rheumatology (because of the muscle and joint issues things like fibromyalgia have been mentioned in passing)
I feel like I have done everything I can to get back to my old self when I worked, kept house clean, had a social life and my animals but it’s nearly all gone and I am nowhere near able to function so whilst I say I’m not clinically depressed I am pretty fed up with life. If it weren’t for my husband holding things together I dread to think where I would be .
This is a lengthy post so thanks to anyone who stuck with it. Any suggestions for things I have missed gratefully received.
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Mag999
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I am so sorry you are and have been so poorly. You have been very thorough. The fact that you have to take ALL supplements echos with me. (Coeliac disease here - I managed 26 years being undiagnosed).
What is your appetite like ? Any gastrointestinal symptoms and stools (sorry but they are a good indication of health). Are you taking anything for low stomach acid ? Some people on here take probiotics (which can be a good or bad thing).
Thanks for replying, I used to have ibs symptoms quite frequently but generally better, I eat a very healthy diet but have wondered about taking digestive enzymes I tested negative for coeliac but my gut is calmer without gluten so tend to avoid Just frustrating as I am running out of things under my control I can change yet still feel quite disabled
UK guidelines on B12 deficiency indicate that people with the symptoms of B12 deficiency should be treated even if their serum B12 is within normal range.
I suggest a neurologist if you haven't seen one before if you have neuro symptoms plus a haematologist, and a gastro enterologist if gut issues present.
Might be worth putting requests for a referral into a short , polite letter to GP as harder to ignore. Try to include some brief info/evidence that supports your request.
Is your GP aware B12 deficiency can cause damage to spinal cord?
I am not saying you have this, I am not medically trained.
I am saying your GP and any specialist doctor you see, should be aware that SACD, sub acute combined degeneration of the spinal cord is a potential consequence of B12 deficiency.
Mentioning SACD may be a way of getting them to take more notice of your symptoms.
Besides the symptoms below, do you have any others that might be considered as neurological?
chronic headache
severe localised back pain
Has your GP got a list of all your symptoms especially all your neuro symptoms?
See Symptoms Lists at top of this reply.
Be well prepared for any appointment with a specialist in case you meet ignorance about B12 deficiency.
I saw plenty of specialists including neurologists, endocrinologist, rheumatologist and only one thought B12 deficiency might be a possibility despite over 40 typical symptoms.
I was never referred to a gastro enterologist despite me suffering years of IBS type symptoms. I wished I'd seen one as they could have taken a look at the health of my gut and spotted signs of gut inflammation etc.
I don't know how they got away with not referring me to a gastro as I always thought changes in bowel habits were supposed to be investigated.
With no help forthcoming with gut issues, I cut out gluten, cut down on sugar and things improved. Gut issues eventually disappeared after I started B12 treatment .
"things like fibromyalgia have been mentioned in passing"
Misdiagnosis of B12 deficiency as other conditions
Fibromyalgia is discussed on a forum thread about 17 days ago called "Who has Fibromalgia diagnosis?"
Nackapan suggests keeping a diary which I also think is a good idea. If you track changes in symptoms over time and if and when any treatment is received, it could be evidence of improvement or deterioration in symptoms and may help you and your doctors to work out how often you need jabs.
If you have been suffering B12 deficiency for a long time it could take weeks even months to see some improvement but don't give up.
I am still seeing some improvements 8 years after starting treatment
Thanks very much, will check those links and a letter sounds like a good plan as telephone appointments just fly by without me coherently summarising, I just feel like a hypochondriac listing all my woes and none of the doctors from gp to neurologist have attributed them to b12. It has been dismissed basically once the loading doses were done it was like that problem was done. It amazes me that what is known about b12 deficiency isn’t more widely appreciated by doctors when it must be simpler to resolve than send people for endless specialist scans, at least in the first instance. Will also restart diary thanks for reminder.
GPs and specialists don't always respond well to finding out a patient is self injecting B12 and some forum members in UK have had their NHS B12 treatment stopped when their GP found out.
"It has been dismissed basically once the loading doses were done"
I can empathise, it can be real fight to get doctors to take B12 deficiency seriously. Some GPs find it hard to cope with assertive patients who ask questions and GP/patient relationship can become strained.
I was diagnosed with hypochondria, psychosomatic symptoms, functional neurological disorder (FND), depression, ME/CFS/Fibromylagia etc etc despite me saying I felt there was one underlying issue that was causing the majority of my symptoms and asking if it could be B12 deficiency.
For me it was rather traumatic to go through that. I did learn a hard life lesson and that was that sometimes the only person who is going to help you is yourself.
To try to be fair to the doctors, there is very little in their training about B12 deficiency although that does not excuse unkindness to patients.
There are far too many people on this forum who have had difficult experiences with GPs and specialists who have misconceptions about B12 deficiency. I suggest you arm yourself with info and evidence to refute any misconceptions about B12 deficiency you meet.
Misconceptions
Blog post that mentions misconceptions about B12 deficiency
I've put links to threads where I left detailed replies on here (as well as on your other thread).
Forum threads with detailed replies, lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, B12 websites, B12 articles and a few hints on dealing with unhelpful GPs.
Hi Mag999, Look up a gentleman called Clive De Carle on the internet, he has a wealth of knowledge on deficiencies. He may be of help. I have taken his advice before and had positive results.
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