i am here supporting my daughter who has been struggling with low B12 and folate for about 18 months.
She was, before diagnosis, very poorly and ended up in hospital age 17 years. Her B12 levels were about 180 and her folate about 1.8.
Despite this she was not treated for the condition until we moved to a different GP practice and our new GP picked it up straight away- started treating her with loading injections and folate then injections every 12 weeks- increased to every 8 weeks then every 4.
She said she thought she had PA even though the intrinsic factor test came back negative. My husbands aunt had PA with difficulty controlling her folate levels too.
Daughter has a good diet and is not vegan.
My daughter has beeen on 4 weekly regime for B12 jabs for a few months, though she is getting symptoms (fatigue, pins and needles and sore legs primarily) after 3 weeks.
The GP told her to leave off folate for a while and see how she went. On 5mg a day, folate got to 18mg after 2/3 months.
However, after stopping it for 9 weeks, level was low again at 2.6)
More problems have followed, as the GP(who was very supportive) has retired!
New GP said she needs a boost of folate but no more B12 jabs as B12 is 2000.
We have a meeting next week with the GP who is a new partner, but I get the feeling that he does not want to offer any further injections (we have everything ready to SI if not).
The only other thing high on blood test was prolactin at 644, which GP wanted to do after asking about family health- my husband had a pituitary tumour before daughter was born, but I’m not sure this is hereditary anyway.
Sorry for such a long post, but can anyone offer any advice and confirm that this 2000 level is ok to carry on with SI if needs be.
Any advice would be gratefully accepted.
13 minutes ago
Written by
hhelen
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Once treatment begins blood tests for B12 are irrelevant. What matters are the symptoms. The BCSH guidelines say that no further testing is required... onlinelibrary.wiley.com/doi...
But trying to persuade your new GP to carry in with 4 weekly jabs is likely to be difffcicult. B12 injections are only licensed for administration every 8 weeks. There’s nothing to stop a GP from prescribing more often (mine does 2-weekly) but some are very reluctant to do so (it’s called prescribing off-label).
So you may have to resort to self injection.
After the new round of 5000 mcg of folate it would be a good idea to try supermarket folic acid (400 mcg a day). This is what is recommended for all women of childbearing potential.
In UK, two first line tests are recommended. Unfortunately some UK Gps do not do second test. Total IgA test checks which patients have IgA deficiency ; these patients will need different tests for Coeliac disease.
1) tTG IgA
2) Total IgA
NICE guidelines Coeliac Disease (2015 version) recommends that anyone with unexplained B12, folate or iron deficiencies should be tested for Coeliac disease.
Has she been ever been checked for internal parasites eg fish tapeworm?
One possible sign of fish tapeworm infection is an increase in eosinophils, a type of white blood cell. Eosinophil level can be found on Full Blood Count (FBC) results.
"We have a meeting next week with the GP who is a new partner, but I get the feeling that he does not want to offer any further injections "
Might be worth joining and talking to PAS prior to this meeting. Basic membership costs £20 for a year. PAS can sometimes intervene directly on behalf of PAS members. See blog post below.
I do hope your new GP is helpful. I'm not sure that GPs always realise just how severe B12 deficiency can be. Info below may be helpful, may be upsetting to read.
Many on this forum also have thyroid problems. Has she ever had thyroid tests? In UK, GPs often only do TSH which won't give a full picture of thyroid function.
Might be worth putting any thyroid results on Thyroid UK forum on HU. Marz who posts on this forum knows about thyroid issues, may be worth looking up some of her posts.
"started treating her with loading injections and folate then injections every 12 weeks- increased to every 8 weeks then every 4."
What pattern of loading injections did she have?
Does she have any neurological symptoms eg tingling, pins and needles, tremors, balance issues, memory problems, word finding difficulties, confusion, brainfog, migraine, tinnitus plus other neuro symptoms?
1) UK recommended B12 treatment for B12 without neuro symptoms is ....
6 B12 loading jabs over 2 weeks followed by a jab every 2 or every 3 months.
2) UK recommended B12 treatment for B12 WITH neuro symptoms is ....
A B12 loading jab every other day for as long as symptoms continue to get better (this could mean loading jabs for weeks even months if improvement continues) then a jab every 2 months.
I'm thinking that if she only had 6 loading jabs over 2 weeks originally (for those without neuro symptoms) and she has neuro symptoms then there may be a case for asking new GP to give second pattern of loading doses ( every other day for as long as symptoms continue to get better). I wonder if she had enough loading injections at start of treatment?
Yes- she had a lot of neuro symptoms with leg weakness, numbness, pins and needles and dizziness, unable concentrate for long, headaches etc....
She has joined the PA- thank you - and we have Martyn Hooper’s book which we are about to go through-Maybe I should get a second copy for the GP!
Coeliac test negative.
Not tested for H Pyroli nor fish tapeworm (though she doesn’t eat fish)
The nitrous oxide - yes- she had toe surgery on both feet in 2012 and had general anaesthetic 4 times, so not sure of exposure then, but when she was ill this time and ended up in hospital, ironically, they gave her nitrous oxide several times for back and leg pain!
We need to work through the info. we have now - just seems so strange - and very frustrating!- that’s most GPs have little knowledge of this.
I learnt from bitter experience not to trust what I was told unless I had a copy of results in my hand. On more than one occasion I was told everything was normal only to find abnormal and borderline results when I got copies.
Has your daughter checked that both the tests I mentioned were done; tTG IgA and total IgA? If total IgA test was not done then I don't see how GP can be sure she does not have Coeliac disease.
As I said above, Total IgA test checks which patients have IgA deficiency. Patients with IgA deficiency do not make the antibodies to gluten that the tTG IgA test checks for so they will test negative on tTG IgA test even if they have Coeliac disease.
Coeliac UK helpline 0333 332 2033 may be able to answer general queries about Coeliac tests.
Does she have gut issues? Has she ever seen a gastro-enterologist?
a gastro specialist may be able to spot signs of gut damage from Coeliac, PA , H Pylori infection etc.
Sometimes Coeliac disease can present just with neurological symptoms.
"The nitrous oxide - yes"
Nitrous oxide inactivates B12 in the body. If hospital knew she had low B12 then did they give her a B12 injection after surgery?
After nitrous oxide administration, it would take time to build up levels of B12 again unless B12 injection/B12 supplements given. The body cannot use the inactivated B12.
There have been cases of people suffering spinal cord damage after being given Nitrous Oxide. See links about SACD in above post.
This is a lot of information to take in and the number of health experts who are lacking in even basic knowledge regarding B12 deficiency quite unbelievable. Scarey. Especially when it is related to their chosen field !
It sounds as if you had a very good GP who was aware of the need to be quick and be led by symptoms in treatment. She also knew that PA cannot be ruled out by an unreliable testing method. If it had been otherwise, there would be no Pernicious Anaemia Society, because Martyn Hooper (founder) had to have this test several times before proving to have PA.
Was your daughter's MMA (Methylmalonic Acid) tested? The reason I ask is that, when I was deteriorating badly when put on a one-every-three-month regime, the GP had my B12 retested and MMA checked: B12 at over 2000 ng/L (from 196ng/L originally) but crucially MMA raised, leading her to diagnose functional B12 deficiency, confirmed by the laboratory where the bloods were sent. MMA levels should normalise soon after injections but mine didn't. This was the deciding factor for justification of an increase in B12 injections to loading levels (2 per week).
It takes some of us quite a while to see improvements. It is worth noting down symptoms on a chart, so that minor improvements or setbacks / length of improvement period in relation to injection/ severity of symptoms can be recorded. My folate, ferritin and vitamin D levels were also affected. This can be important because while some GPs may not recognise all of the symptoms as being B12 deficiency, some highly visual and persistent symptoms eg; hair quality/loss, or sores at corners of mouth might be attributed to either folate/ferritin deficiency. Vitamin deficiencies present in some similar ways visually- eliminating some of these may get you to the answer quicker.
I also take photos sometimes, just in case they don't believe me if I'm having a rare "good hair day" ! Very good luck. Let us know how your daughter gets on.
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