I've recently been to a private GP here in the UK (primarily because I was getting nowhere fast with my own). After describing my symptoms, he was pretty certain I was suffering with an autoimmune disorder. After having a whole host of tests done, he's advised vitB12 injections, folate and vitamin D.
Now, while he's not specifically said PA yet, I'm assuming this will be his diagnosis once I see him next week. But, in meantime, I wanted to just get your views on the symptoms I've been suffering for the past 12-18 months.
So, I'm 37, quite fit and healthy. Other than my symptoms, which can often be pretty crippling on a day to day basis:
Head - Brainfog, wooziness, often wake up feeling 'hungover' and my eyes and ears often feel very sensitive to light and sound. My neck often feels quite weak, head subsequently feels really 'heavy'. Often get twitches or ticks in my eyelids and have blurry vision/affected vision. Lately, I've had to see an optician re: my eyes, who confirmed my eyesight is generally very good. Was referred on to neurologist who said it was migraines, despite the clear lack of any sort of headaches (other than occasional ones that we all get).
Chest - Breathing issues which have come on gradually over the past 4-6 months. Thought it was caused by high BP, or hayfever. Got really bad and was on a course of steroids, which helped slightly. Bizarrely, taking Wind Eze (Simeticone) seems to help more. The breathing issues come and go, but lately I've been having a lot of trouble doing my usual exercises (running, lots of brisk walking) without getting quite out of breath and feeling really.. exhausted afterwards.
Stomach - Increasingly worse gastro issues for the best part of 10 months now that has become worse. To the point where I've taken to going 'Free From' (i.e. gluten, wheat, milk) as much as possible. This does help the stomach issues but not completely. I'm experiencing more discomfort than pain, per se. Lots of bloating, wind, and some 'silent' reflux. I don't know whether this is associated to the breathing issues, as I often get a tightness in the bottom of my throat, which comes along with the breathing problems.
Generally - I feel really tired, borderline completely exhausted a lot of the time, which worsens most of the other symptoms. Initially, I put this down to having stopped drinking caffeine, fizzy drinks after having had an ablation for my atrial fibrillation last year but no matter how much rest/sleep I get I'm always so tired.
I've not noticed any tingling or pins and needless, although I did suffer with this about 10 years ago for about 6 months, strangely. I have noticed lately though, that my fingertips and toes often feel really cold, while my core body is usually very warm.
I have some issues.. 'downstairs' too but I'm not so sure that's related, so I'll save that for another forum.
Thanks in advance, all
DT
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DaveT81
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Yeah, I have been increasingly feeling worse over the past few months and seem to start developing new symptoms all the time. Thanks for your response!
Your symptoms have sound similar to mine Dave, the brain fog and memory loss made it very difficult to function at work! I’ve been self injecting daily and the worst symptoms have gone although I still have general tiredness, tiredness on exercising, some pins and needles and stomach issues, as well as diarrhoea- drinking water with a lot of lemon juice helps with this as does protein digesting enzymes. There is a slower improvement with these!
It’s interesting you mention surgery as nitrous oxide depletes B12. Had you had a surgery prior to your earlier episode 10 years ago?
Good luck! The best advice I can give you is to find out as much as you can as many doctors can be dismissive of B12 Deficiency and as you know it can be very debilitating.
Hi retrofunk, no surgery prior to that episode 10 years back. I can't remember a lot about that time, but I did see my doctor and a neorologist I believe. Neither could explain it and, eventually it just passed.
I agree wholeheartedly with Retrofunk 's comment to find out as much as you can about B12. Sadly B12 deficiency is not as well understood by some GPs and specialists as it could be. Some forum members have found it helpful to take a supportive person with them to appointments.
Best piece of advice I ever got was to always get copies of all my blood test results. Some forum members get complete set of medical records.
Is there a family history of b12 deficiency, Pernicious Anaemia, other auto-immune disease? If yes, does GP know?
Have you ever been tested for PA (Pernicious Anaemia). In UK, this would be an Intrinsic factor Antibody test. IFA test is not always reliable and it is still possible to have PA even if IFA test result is negative or normal range but some GPs may not be aware of possibility of Antibody Negative PA. See BSH link below for info about Antibody Negative PA.
Coeliac Disease?
This can lead to b12 deficiency due to effect on gut.
In UK, two first line tests are recommended.
1) tTG IgA
2) Total IgA
My experience is that Total IgA test is not always done in UK. Total IgA test shows which patients have IgA deficiency (an immunoglobulin), people with IgA deficiency will not make the antibodies that the tTG IgA test checks for and so will need other tests for Coeliac disease.
One potential symptom of fish tapeworm infection is an increase in eosinophils, a type of white blood cell. Eosinophil result can be found on Full Blood Count test results.
NICE CKS link above recommends that GPs seek advice from a haematologist for a patient with b12 deficiency with neuro symptoms. Has your GP contacted a haematologist if you have neuro symptoms?
More B12 info in pinned posts on this forum, including a useful summary of mainly UK b12 documents in third pinned post.
B12 books I found useful
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies.
PAS (Pernicious Anaemia Society)
Based in Wales, UK. Offers support and info about PA. Might be worth joining and talking to if PA is suspected.
3) I gave my GPs a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and B12 Deficiency".
I hope you get the help and treatment you need. Emphasis in UK B12 documents is on treating people who are symptomatic for b12 deficiency even if the B12 levels is within range.
Unfortunately, the private GP I've been to doesn't have my complete medical history and it wouldn't be easy to get hold of it. But, to be honest, I doubt it would help him much as my family GP spent far too long barking up the wrong tree(s) and not sending me for the right tests. I had to force a lot out of him at that time.
I may have struck lucky with this GP, as he says autoimmune diseases are his specialty and that he 'treats symptoms, not results'. I had a lot of different bloods done and when they all came back as 'normal', I was a little disappointed as I felt that it didn't stack up with what he'd told me. But on closer inspection, he still wasn't happy because my B12, folate and vitamin D are all still very low so I'm having my first injection next Thursday. He also said I'll be taking folate and vit D as well.
There isn't a family history, as such but my sister has suffered with many of the same or similar symptoms for a long time. Sadly, she had to leave work eventually and is now supported by her partner who is - thankfully - great with this. She was told she may have had a stroke, then diagnosed with ME, then told something else. Eventually, she was just brushed under the carpet and forgotten. She's got a handle on most of her symptoms and manages to 'cope' but if this GP can help me, he may be able to help her too.
Also, I believe my gran suffered a lot of similar symptoms too.
I have been tested for PA, but I am going to mention it to him when I see him next week. Luckily, I work in a hospital with a bunch of nurses so I may see what the chances are that they could order the tests for me. I'm already a patient, so.. Also, I will check out those links. Thanks!
Several case studies in B12 books I listed in post above about people with B12 deficiency being misdiagnosed with ME/CFS. I cried when I read "Living with Pernicious Anaemia and Vitamin B12 Deficiency" ... it was as if I was reading about myself.
"Luckily, I work in a hospital "
Have you been exposed to nitrous oxide? See link on Nitrous Oxide in my post above.
You mention gut issues...have you ever been given PPI drugs?
Some forum members have been diagnosed with high stomach acid only to find out later that they had low stomach acid (hypochlorydia). Symptoms are similar.
Have you been referred to a gastro-enterologist? An endoscopy might show sings of gut damage from PA, Coeliac disease, H Pylori infection etc.
"He also said I'll be taking folate and vit D as well."
I've read that it is important to treat any co-existing B12 deficiency at same time as treating folate deficiency. See Management section in next link for more info.
I suffered with similar particularly the gastro ones and tried changing diet and cutting out foods which had minimal effect. General fatigue not being able to do what I normally would. Having to stop to breathe walking uphill.
Tight throat feeling. Brain fog. Forgetfulness.
Weird pounding/whooshing in the ears. Weird spate of recurring boils on the thighs.
BUT I was first diagnosed with hypothyroid and treated for it which I still have. And the symptoms didn’t completely go. I still felt generally unwell. Further testing discovered the B12 deficiency and I’ve been OK since treatment. That’s more than 10 years ago now.
As they’re autoimmune problems the symptoms overlap and are common so if you still feel ill after treatment investigate. If you’re prone to autoimmune diseases then it’s possible you may have more than one like me.
Also, as of the last 24 hours I've had 2 new symptoms that I'd not completely experienced before - walking home from work last night (a good 1 1/2 hour walk), I started suddenly feeling very weak in my arms and legs. Felt very tired and shaky by the time I got home.
Then, this morning, I woke up and sat up.. the room was spinning. Have these got anything to do with B12 deficiency and/or PA?
I should also point out that the GP I've been in contact with is giving me my first B12 injection next week. The lab results showed it as in normal range, but a little research (and fbirder) tells me that, although it was within normal range, it was actually really low. As is my folate and vitamin D. Both of which he wants me taking as well.
Both of these yes, I had very weak legs felt like they were jelly. And if I did any kind of exercise I felt very light headed and head spun, and ended up with a severe throbbing headache and nausea. Thankfully after self injecting 3 times a week for past 4 weeks all symptoms are very much on their way out and I'm able to start reintroducing exercise again. Unfortunately if I miss an injection at this early stage some symptoms do seem to rear slightly again but this should improve with time...
I have, I'll definitely post them. They appeared in normal range but you never know with these things.
Hi,
Your breathing issues are reminiscent of a problem I had from 2000. I would suddenly find myself gasping for breath even to the extent of collapse. I had difficulty in talking as I would run out of air after a couple of words. Salbutamol inhalers worked fine. I also had reflux which was treated with PPI’s. It began when I was 56. Eventually the inhalers were no longer effective and I ended up with a gastroenteroligist who was determined to find out what was going on.
It turned out to be a hiatus hernia which was allowing a miasma of gasses to rise up and partially suffocate me. The treatment for that was a laparoscopic Nissan fundiplication when I was 65 and the breathing, talking and reflux problems disappeared over night. They have never recurred over the past 8 years.
B12 deficiency appeared after 5 years, probably as a result, but that is dealt with by injection.
The most upsetting thing I had said to me when looking for diagnosis was when consultants commented “I see you have a problem, I have no idea what is causing it and cannot be bothered to find out.” Hence my admiration and respect for the wonderful man who said “I have no idea what is causing your problem but I will promise you I will use all of my knowledge and contacts to find out and get you a solution” he did just that. Best of luck. (My consultant has retired)
Your symptoms sound very similar to mine. I had problems with throat tightness, breathing, wind, I haven't been able to eat gluten or dairy for the last 24 years. I thought it was reflux, but it turns out these conditions reduce your acid, so at least acid can't be refluxed (although I believe other substances can be). I have been very tired, achy with muscle twitches and then right around being diagnosed some pins and needles. I always had tingling all over on and off, which I had put down to anxiety. I now know I have PA and autoimmune atrophic gastritis. You can apparently have one without the other, but they do often come as a pair. Whichever you are diagnosed with first, you need to be checked for the other. A low FODMAP diet has sorted me out stomach wise in the main, but others don't seem to be that limited. Probiotics may also help.
Let us know what you get diagnosed with. I'm just off to the GP to get a third week of B12 loading dose. I don't feel much better yet (aches, tiredness some tingling), but better than I did, and I think it could take a while to recover.
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