Took daughter for some blood tests this morning and had a discussion with phlebotomist, B12, auto immune stuff, etc. I have told her about HealthUnlocked and asked her to look it up as there are lots of forums. What saddened me most is how anxious she was about B12. I mentioned PA and she said she was told as a child she had PA , and did have treatment but now has been told her B12 is over 3000, no more treatment, they have told her this will cause a stroke and possibly heart attack. She has also been told that NHS don't test for Sjögren's, there's no help so she is looking to travel to London and pay for tests help which she has been told will costs her thousands.
Don't know why I posted this but just hope she gets help and hope she finds her way here.
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Polo22
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"but now has been told her B12 is over 3000, no more treatment, they have told her this will cause a stroke and possibly heart attack."
I think it's more likely that lack of B12 will cause a stroke...B12 deficiency can lead to raised homocysteine and raised homocysteine increases the risk of stroke.
I really hope she finds her way to this forum.
Stopping B12 treatment could put her at risk of developing permanent neurological damage.
PAS article about SACD, sub acute combined degeneration of the spinal cord
Lots more info in pinned post "Various PA/B12D resources".
I think forum members here can't bear to think of others suffering in the same way they have. It was very kind of you to reach out to her and try to help.
I have pointed her in this direction , mention PA society , did say try not to worry you can't OD on B12, she responded but they told me it's too high and dangerous I just said that's not true, that PA needs treatment for life and said what they had measured was serum and only a tiny % of that can be utilised. She probably doesn't earn a fortune yet she has been told by her Dr's that she'll have to sort out Sjögren's tests diagnosis etc herself, she only recently found out her Nan has it , her Mum doesn't want to find out because she has MS and said there is no point. Doubt I'll bump into her again but I did try to impress on her the importance of the support and information she could access here. I hope she joins
I had blood tests and a lip biopsy to test for Sjögren's on the NHS. It was going back a few years (maybe 10) and it was done through Rheumatology at the hospital rather than the G.P. So unless things have changed in the meantime, yes it is available on the NHS, as is treatment!
I had one Doc at the surgery tell me that they can't test for vitamin D deficiency on the NHS. A short while later, a different Doc at the same surgery tested my levels. So it might be worth asking a different doctor, as their right hand often doesn't know what their left is doing, in my experience.
If she has PA, it would be a lot less expensive to self-inject like so many others on this forum. It is common to have very high B12 when people are supplementing but it does not mean that the PA has gone away. I hope she gets help before she starts getting irreversible nerve damage.
Bear in mind that anxiety is or can be a symptom of B12 deficiency. Perhaps not well understood by many GPs, but certainly familiar to people here: concerns making a person anxious where previously they would have not been worried. Easily stressed.
"....she said she was told as a child she had PA.."
Pernicious anaemia has no known cure.
The treatment is to address the lack of B12 resulting from PA, and cannot eliminate PA which is a lifelong condition. Furthermore, there is no conclusive way of testing for a PA "cure" since the test used for detecting PA in a patient (IFab: Intrinsic Factor antibody) is likely to show a positive result 40-60% of the time in patients with PA. Once a positive result has been found, it is 95% accurate: that must be sufficient proof if proof was needed.
Has she ever had this test (IFab) return a positive result ? It might be important for her to get a copy of this. If not, perhaps diagnosed by GP experience, enlarged blood cells or Schilling test : worth finding out.
helvella has spelled out clearly in her post above that retesting is NOT advised. My GP monitored my folate, ferritin, vitamin D and thyroid -but not my B12: "pointless" she said. Also the opinion of any of the UK medical guidance bodies.
Sleepybunny has given some very useful links. We are often forced to study the medical research, to make our own case. Even with memory/cognitive issues.
I just have a story- so forgive me if you have already read this. I have repeated it often:
I have a lovely Oral Medicine consultant, who was treating my angular cheilitis, and who became concerned about my "sky-high" B12 levels. Despite not making any connection between my angular cheilitis or my burning tongue and my B12 deficiency, he became distracted with his worry, which was this: if my frequent self injections were taking my B12 serum level above the measurable amount (here anything over 2,000 ng/L), how could he be sure that these levels were not escalating ? Well, yes, he had a point - but by the time he'd made it, I had been self-injecting frequently for years. I liked him, and so I tried to reduce the injections slightly, perhaps just to allay his fears. It did not work: symptoms returned quickly and this was evident to others. So not just me !
Still, this bothered him and so he asked in his report to my surgery that a GP help me gradually reduce my frequency with monitoring and guidance. He got no reply and I got no phone call. Then covid hit the UK.
A year or two later, after covid, I saw him again and he said (in front of his students) that he had completely changed his mind. He had discussed me with experts and he was wrong: I should not reduce my injections as my body would not function properly without them, and that tablets would be useless.
[....which has been my experience.]
Good. Back to the angular cheilitis and burning tongue, then. My angular cheilitis (sore, splitting and bleeding lips especially in the corners) can be controlled by applying nipple cream (100% lanolin) but also reappears within days if I stop, despite cultures not revealing anything. The daily burning tongue is apparently nerve damage. Cause unknown.
My particular B12 problem had been diagnosed early on by my GP as functional B12 deficiency - not PA. If DNA specialists find an hereditary cause for a problem with one or other of the processes necessary to transport B12 to cells/tissues, guess what the recommended treatment is ?
2 injections a week.
...which was the frequency given to me by the GP for six months and one I still continue, years later, to use myself. Despite this, my methylmalonic acid (MMA) remained raised for three years. The DNA specialists however did not find a cause in my case - for which they apologised.
Strangely , it was the phlebotomist who was upset/anxious because she had had her treatment stopped, not my daughter, However just minutes ago had a call from GP surgery Doctor says she is concerned re my daughters low B12 and folate, that she is concerned re HBa1c of 41, very high apparently for a 15 year old. and very high Lipids so i asked for numbers total is 4.5 triglycerides 2, think she said HDL 2.4, think she might not know what she is talking about. Told her it ill probab ly be an absorption problem , as she is just like me, she then said oh have you been diagnosed, no because if you diagnosed then you ould have to treat
GP that is dealing with daughter is newish, not seen her before, mind you I don't go anymore unless I have to. She has referred her to a rapid access clinic at local children's hospital, Alder Hey. Apparently they will contact for her to be seen within a week. I am up the wall at the moment, so will be leaning on you all for info and guidance , head is having a complete sustained wobble. Up most of last night as youngest, designer gene darling is quite poorly, had her at out of hours at 9 pm, temp just over 39 , spiking up wards even with calpol/ibuprofen every couple of hours. Doc there was lovely, sensible and he listened and actually listened to me and LO. Rather bad chest infection, always worry when this happens, she can go from snotty nose to hospital on O2 very quickly. She had pulmonary hypertension when little on sildenafil and O2 till 3. Waffling now but need to get all my balls in a row. Start sorting out pennies, well pounds for tests, hope to get as many as poss from NHS, apparently repeats are required on B12, folate and ESR because they are so deranged, the note from lab on results says " B12 results should be interpreted in the clinical context. If pernicious anaemia is suspected please send serum sample to Immunology for intrinsic factor antibodies"
Yes, HBa1C is used in children. (both my children have type 1 diabetes) They have it checked regularly to make sure they are well controlled. (The diabetes, not the kids 😆)
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