Evening All. I have just got back from the doctor as my daughter needed to get another certificate. I asked the doctor why my daughters B12 deficiency has not been looked into any further as all they have done is the GPC test which came back negative. She had 6 injections over a two week period to raise her levels, then 6 months later her levels were low again so the procedure was repeated. She did not get any reduction in tiredness after these injections or any improvement. As the levels had risen, that was it....no more treatment needed. She said that now she was in range nothing was wrong but didn't come up with any conclusion as to why they had fallen in the first place or why they had fallen again after the first lot of loading dose. I said that the only reason they had risen after the second dose was because she was supplementing herself. There was no explanation as to why her folate is high despite her not supplementing. Nor her pallor, hairloss , lack of concentration, clumsiness. I just couldn't get any answers at all. So we were told that her extreme fatigue was not being caused by B12 deficiency as she had never heard or come across someone with such extreme fatigue. It must be the depression was her conclusion! I then said that she has not had her D3 tested so she has agreed to it being done and is once again doing the B12, plus folate, crp, blood film, ESR, FBC, Ferritin, Glandular Fever. I am amazed I got her to agree to do any of these tests so i suppose I should be grateful!
And So....: Evening All. I have just... - Pernicious Anaemi...
And So....
Sorry it is so difficult dealing with medics because their understanding of B12 and how it works is, in general so poor.
You mention folate being high- one possibility is problems methylating vitamins - particularly B12 and folate. For some people this means that the folate stays in their blood because the body can't use it.
This is a reasonably balanced introduction to the genes that lead to methylation problems
Thanks Gambit. As she hasn't supplemented her folic acid for a few months I am hoping that her levels will drop. They aren't horrendously high but are over the range. Am I right that if she raises her B12 levels that it should help to lower the folate as well?
As far as I am aware there isn't any problem with having high levels of folate - my b9 levels are probably over range (were last time they were measured which would have been about a year ago) but wasn't flagged as something that needed follow up (B12 levels were the same as I supplement heavily.
The main concern with folate is that it can mask the macrocytosis caused by a B12 deficiency so not sure I would really worry about trying to find ways of getting them down.
There have never been any problems reported relating to dietary folate.
This is slightly different from wondering why they are high if she isn't supplementing - the only cause I'm aware of in these circumstances would be methylation problems but as I'm not a medic and haven't actually investigate it that doesn't mean there couldn't be other things going on .... just flagging it as it would also affect ability to use B12 as that also requires methylation.
Thanks once again Gambit. ~Its just strange that when she was first diagnosed with low B12 her folate was low but still in range so she supplemented with folic acid. Her folate levels rose so that they were over the range but since stopping the supplements they have not gone down but have slightly increased. I noticed that on all but one of her tests her mean corpus v haemoglobin was marked as low, only slightly below the 28, but still flagged as low which I think points to anaemia. I watched the video about the methylation problem which said to avoid folic acid supplementation which we will do and as she is dairy free that isn't a problem. Unfortunately she does have soya drinks and gluten which will have to be addressed to see if it helps. I personally avoid soya due to hashimoto's but I have never had a problem with dairy. Its so hard trying to do this on your own!
Hi Laura5
They didn't prescribe iron, her latest blood test done the end of November showed that her ferritin was 33 range (15-200). Although underneath that is written <15 IDA confirmed 15-40 IDA possible. On the FBC Mean corpusc.haemoglobin was 27.2pg range (28.0-34.0) "Low". I queried this with the doctor and she said that it was fine despite my daughter feeling dreadful and looking extremely pale. I then bought some over the counter iron tablets as I think she could do with her levels being higher.
Have you tried to contact the Pernicious Anaemia Society to get their advice. There is a phone number on their website, and I believe they can intervene where a doctor is not offering the correct treatment. Best wishes MariLiz
Hi MariLiz. I did contact P A Society when the problem first arose, so I will contact them again and see what they suggest. We had to go to an assessment (DWP) yesterday, and the doctor there was as dismissive as her gp. All they want to do is shove anti d's down her despite the fact that over the past 8 years they did absolutely nothing for her whatsoever. They just kept increasing the dose or changing them and all it did was make her a zombie. Her eyes were dead....no emotion, nothing.. She has been off them for two years and although she obviously does have problems she says that she needs to "feel" emotions. She also recognises that the fatigue she has is different to the depressive tiredness she originally had. She wants to be able to exercise and to be able to concentrate when trying to read but is too darn weary.
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