I had a follow up appointment with my doctor, I have finished my loading doses and have been off them for 3 weeks now. I went back to say about new symptoms that have come on such as twitching which I didnt have before and other things like muscle aches and pains, weakness etc. I have a blood test in 3 days which will tell me what the levels are to see if they are working but the doctor suggested that a possible cause could be celiac disease. I do have a swollen lymph node which is a a sign, I was just interested to see if anyone else had uncovered this during treatment or knows anythint about it.
Thanks for any responses
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jacobwentworth
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I had a gastroendoscopy where they took a sample for biopsy to check for celiac (not had the results yet), but I think that was more to do with low iron than my low B12. Good luck with your tests.
I was dx coeliac 2yrs ago next month (++ positive blood result & biopsy). Mine were classic symptoms, but more & more people are getting tested and diagnosed due to either low Iron or neurological problems, so its good that your GP is testing. It took them years to test me for it.
I was feeling really rubbish when I was diagnosed, and I'm sure that a lot of that was to do with the low or deficient nutrient levels. I expect that your GP has tested your Iron & Folate, but what about Vit D? GP's are reluctant to test Vit D, as it is considered an expensive test.... so, now they just recommend that everybody needs to supplement. Deficient Vit D caused me to wonder if I had some kind of dementia. It is worth pushing to get tested.
by elimination when you have B12 deficiency symptoms .
if you are not vegan or strict vegetarian.
If you do not take Metformin or PPIs ( proton pump inhibitors e.g.Omeprazole ) any acid-negating preparations and other pharmaceutical drugs ( look up on the internet )
If you do not abuse Nitrous Oxide ( laughing gas)
If you do not have fish tapeworm
If you have not had surgery to your digestive system, then you probably have P.A. Then , also if you can tick 4 of the following ———
Low serum B12
Symptoms of B12 deficiency (Google to find out - and there are many symptoms.
Gastric atrophy restricted to the corpus and fundus
Intestinal metaplasia in the stomach ( can be caused by Helicobacter Pylori.infection
Macrocytic anaemia ( enlarged red blood cells) and not enough normal sized
Hypergastrinaemia (various causes including Helicobacter Pylori infection .) Of course a positive result for an Intrinsic Factor Antibody test( IFAB) is conclusive proof of Pernicious Anaemia, but , in about 50% of P.A. patients , the test comes back as negative.
High Homocysteine occurs in untreated or insufficiently treated Pernicious Anaemia patients , but there are also other causes for it .
High levels of Methylmelonic acid can also be indicative of Pernicious Anaemia.( In blood or urine )
Don’t forget that this information does not come from a medical source , but from someone who went undiagnosed with pernicious anaemia for many years , and has an irreversible symptom for that reason . By trial and error ( and gross financial depletion ) I have arrived at the above . I did get a conclusive diagnosis.I was lucky to get a positive IFA test , obtained through a private doctor ,which was acknowledged by my GP , but I could not get sufficient injections ( only allowed 1 every 3 months ) So now I self inject weekly, and keep well, but have to cope with the irreversible symptom .
Reading posts on the forum has been very informative. Best wishes .
You can have pernicious Anaemia even with a normal VitaminB12 reading . This is called functional deficiency , caused by Intrinsic Factor Antibody interference with the Assay .
PERNICIOUS ANAEMIA IS THE MOST COMMON CAUSE OF VITAMIN B12 DEFICIENCY.
Do you eat plenty of B12 rich food eg fish, meat, shellfish, dairy, eggs, foods that are fortified with B12?
I have read that being vegan or vegetarian may be a factor in developing B12 deficiency for some people.
You could write out a typical weekly diet, all food and all drink, to show GP and highlight any B12 rich foods you are eating.
If yes to a B12 rich diet, less likely that diet is a cause of B12 deficiency and more likely that there is an absorption issue in the gut eg PA (Pernicious Anaemia), Coeliac disease, H pylori infection, fish tapeworm infection and other internal parasites, Crohn's disease and others.
PAS can offer support and pass on useful info about PA.
PAS membership is separate to membership of this forum.
I have read that a pepsinogen test may also be useful.
The possibility of PA may not be on the GPs radar for you as it is sometimes thought of as a disease that affects older people. It can affect any age from babies through to the elderly. See PAS website.
Internal parasites such as fish tapeworm may lead to B12 deficiency.
Do you eat raw fish or have you stayed in an area where internal parasites are common?
One clue that there may be an internal parasite is a an increase in eosinophils, a type of white blood cell. Eosinophil results can be found in Full Blood Count (FBC) results.
Some other causes of B12 deficiency include
excess alcohol consumption
exposure to nitrous oxide
Nitrous oxide changes B12 into a form that the body cannot use so the person may develop symptoms of B12 deficiency.
If you have any neurological symptoms, my understanding is that you should have every other day loading injections for as long as symptoms continue to improve (could be weeks even months of them) then a maintenance injection every 2 months.
Some GPs may not be aware that there is a different pattern of treatment if neuro symptoms are present. Make sure your GP has a list of any neurological symptoms you have.
How many loading injections did you have?
How often are you going to get injections now the loading injections have finished?
NICE CKS (Clinical Knowledge Summary) B12 deficiency and Folate deficiency
You might find it helpful to track down the local B12 deficiency guidelines for your ICB (Integrated care Board) or Health Board. Your GP or any specialist is likely to refer to these when diagnosing and treating B12 deficiency.
Read the blog post below if you want to know why I suggest finding out what's in the local guidelines.
Seeing a specialist is no guarantee of better treatment but fingers crossed you get a good one.
Referrals are expensive for GP surgeries so they may be reluctant to refer. If your GP is reluctant to refer you then you could ask them to write to a local neurologist/haematologist for advice on how to treat you.
From my difficult experiences with medical professionals I would say that B12 deficiency is poorly understood among GPs and specialists. You may find you need to challenge what your doctors say.
I really hope you have someone to help you.
Some forum members resort to treating themselves if NHS treatment is not enough. I feel this is a last resort.
Symptoms Diary
If you have the time and energy, consider keeping a daily symptoms diary.
Pick up to ten symptoms to track, score severity each day. Note date/amount of any treatment. Note relevant blood test results. A diary could be useful evidence of any improvement or deterioration in symptoms.
If symptoms are getting worse, starting to return or new symptoms appearing then that might mean more frequent B12 injections are needed.
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
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