So we went to GP this evening, the antibody tests are back as negative. The GP was sat there with my complaint letter in front of her and was abit funny with us to be honest. I quoted the NICE guidelines and asked why my partner was not being treated for neurological symtoms. She informed me these are the guidelines for b12 deficiency anemia not b12 deficiency. She said my partner does not have b12 deficiency anemia as his blood count was perfect, she said he may have slight iron deficiency without anemia. She went on to inform us that he has no problem absorbing b12 and when I mentioned the fact he's on acid tablets she didn't really have a solution for that. She said that she doesn't believe his symptoms are coming from b12 deficiency as loading doses will have solved that. She then went on to say he's been back and forth to drs for years with same symptoms and they've not found anything. Is it right what she is saying about b12 deficiency anemia and b12 deficiency being different? I don't know where to go from here and its not often I'm stumped. I'm feeling abit of a failure to be honest before my daughter was born I ran a charity advocating for disabled persons, I was known as a force to be reckoned with and I think iv lost my touch because I cant even help my partner who's being gaslighted at every turn. Every time I present drs with guidelines they come back with something and because I don't know enough despite the fact I feel like I know more than they do as I don't believe a loading dose of b12 has manically fixed anybody in a week. Really needing help and guidance
B12 deficiency and b12 deficiency anemia - Pernicious Anaemi...
B12 deficiency and b12 deficiency anemia
Apologies for really quick reply as busy.
"She informed me these are the guidelines for b12 deficiency anaemia not b12 deficiency. She said my partner does not have b12 deficiency anaemia as his blood count was perfect,"
I think when she says B12 deficiency anaemia she is referring to megaloblastic anaemia or macrocytic anaemia.
It's possible to have B12 deficiency anaemia with normal blood count.
B12 or folate deficiency can lead to enlarged red blood cells (macrocytosis).
Iron deficiency can lead to smaller red blood cells (microcytosis).
If a person has both iron deficiency and B12 and/or folate deficiency then their red blood cells may appear to be normal size on Full Blood Count (FBC) as effects of iron deficiency can mask effects of B12/folate deficiencies.
Link about FBC
labtestsonline.org.uk/tests...
Quote from NICE CKS B12 deficiency
"Note: clinical features of vitamin B12 deficiency can occur without anaemia and without low serum levels of vitamin B12."
Quote from NHS B12 article
Some of these symptoms can also happen in people who have a vitamin B12 or folate deficiency but have not developed anaemia.
nhs.uk/conditions/vitamin-b...
Maybe other useful quotes in these articles.
B12 article from Mayo Clinic in US
The Many Faces of Cobalamin (Vitamin B12) Deficiency
ncbi.nlm.nih.gov/pmc/articl...
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.
Misconceptions about a B12 deficiency
(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)
stichtingb12tekort.nl/engli...
Diagnosis and Treatment Pitfalls
(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)
b12-institute.nl/en/diagnos...
Have you had any luck yet finding the local B12 deficiency guidelines for your ICB/Health Board?
This may mention that anaemia is not always present.
"Really needing help and guidance"
Might be worth talking to PAS if you're a PAS member.
pernicious-anaemia-society....
B12 Info has supported some forum members.
The person who runs the website may be interested in blogging about your partner's case.
Great response !👍
It's okay sleepy bunny I always appreciate you making time for replies. It's early hours and iv been up with the baby and im just trying to think where to go from here with GPs. My partner is concerned about the acid tablets he takes now and wants to stop them the only thing is I don't think thats going to solve anything just create more problems. Hes been on acid tablets about 2 years now but hes had b12 symptoms for nearly 20 years so unlike GP I don't think they are the cause. Iv requested access to all his test results online as from what we've been told old tests said b12 was low but not by nhs standards if that makes sense. His folate count is good however his iron levels are on low side 34 I believe. The thing I'm wondering is and you might be able to help with if the b12 was caused by acid tablets would it stop him absorbing other vitamins aswell? I will definitely see about joing pernicious anemia society and im going to write another complaint to drs. I think what may not have helped was when we walked in room she had my previous complaint letter on desk in front of her and i don't think she was very happy about it, I referred to medical gaslighting in it. She then proceeded to medically gaslight us more. I will also go on b12 website. Its very frustrating I just want my partner to get the right treatment i don't understand why the GPs are so reluctant to prescribe b12 injections.
Been away for a few days...hope you're okay.
There are forum members who were diagnosed with a high level of stomach acid who found out later that their problem was actually a low level of stomach acid.
The symptoms of hyperchlorydia (high levels of stomach acid) are very similar to those of
hypochlorydia (low levels)
achlorydia ( no stomach acid)
Has his GP looked into whether he has low stomach acid?
Articles about low stomach acid
drmyhill.co.uk/wiki/Hypochl...
avogel.co.uk/health/digesti...
This next article mentions a simple home test that may give clue as to whether low stomach acid is present.
avogel.co.uk/health/digesti...
Being on PPI drugs for an extended period of time is a known risk factor for developing B12 deficiency. Search online for "B12 deficiency PPI drugs uk".
A negative IFAB test doesn't rule out PA.Your doctor has fallen for treatment pitfall no.1 as explained by the B12 Institute:
"1. B12 deficiency often occurs without anaemia.
When there is a suspicion of symptomatic B12 deficiency it is important to measure the B12 serum determination (in addition to excluding other diseases, such as thyroid diseases and Lyme), even if anaemia has not been diagnosed.
The still widespread misconception that there has to be anaemia for a diagnosis of ‘real’ B12 deficiency causes many unnecessary misdiagnoses (Iqtidar, 2012), often resulting in a lot of suffering (and expenses). Please take a look at our preliminary research results into the relationship between B12 deficiency and anaemia (n=161.541): b12-institute.nl/data-macro...
from :b12-institute.nl/en/diagnos...
I don't know the guidelines for your region but in general the treatment paths differ not based on the presence of anaemia but on whether neurological symptoms are present.
The idea that loading doses would instantly "cure" symptoms of B12 deficiency where the deficiency symptoms existed for some time is a mind-blowingly stupid idea.
Serious neurological damage may take months to years, and if untreated for long enough, may not be fully recoverable. B12 is not magic. The damage incurred to the body while B12 is deficient in the body is very serious and takes a long time for the body to heal and recover from.
Loading doses for most patients with a serious deficiency are the BEGINNING of the healing process, NOT the end.
I also agree that it's a mind blowingly stupid idea to think loosing doses have fixed everything. I think the GP was unwilling to accept my partners symptoms come from b12 deficiency. Not only is there a long family history of this and anemia he currently has a scalloped swollen tongue and a mouth full of ulcers, I mean honestly perhaps the Dr can argue with symptoms such as tiredness and off balance feeling but you can't argue with what you can see right in front of your eyes (not that she bothered looking. She said b12 deficiency is the red herring and that his b12 deficiency was new. As iv pointed out to my partner though you can argue with other symptoms but he's had mouth ulcers several at a time monthly or twice a month for the 3 and a half years iv been with him and he tells me even prior to this. The GP in question we say a few months ago we mentioned mouth ulcers at the time and she seemed convinced his symptoms due to anxiety and prescribed sertraline. I'm unsure if it's a case of general lack of knowledge and ignorance or a case of not wanting to admit she missed something. I'm trying to talk my partner into self injecting the thing is after having this so long he does have abit of health anxiety which is understandable after being ill so long and is nervous about injecting himself incase of air bubbles and also putting an unknown substance in his body. I will definitely refer to this information in next complaint letter also temped to put in the mind blowingly stupid comment might have to resist though
Hiya. I don’t understand the concern about air bubbles, b12 is administered INtra muscular or sub cutaneously. Air bubbles are only a problem for intra venous surely.
"Not only is there a long family history of this and anemia he currently has a scalloped swollen tongue and a mouth full of ulcers, "
Apologies if I'm repeating questions (bit foggy as overdue a B12 injection) but does the GP know about the family history?
Worth taking photos of visible symptoms such as mouth ulcers, scalloped tongue etc if your partner is happy about photos.
Has your partner talked to his dentist about these symptoms?
If dentist thinks they are due to B12 deficiency and/or folate deficiency then your partner could ask dentist to write to his GP.
If you write another letter to GP, you could include
1) a list of all his symptoms (could use PAS list below with extras added)
pernicious-anaemia-society....
2) list of all his risk factors for B12 deficiency
pernicious-anaemia-society....
3) maybe photos
4) maybe info about SACD
pernicious-anaemia-society....
In the end after developing dementia symptoms and spinal symptoms and my NHS GPs refusing on several occasions to start B12 treatment, I had to start treating myself.
B12 deficiency/P.A. is poorly understood, poorly treated and mistreated. Doctors receive very little training on the subject. I was with a friend yesterday and they quoted that doctors receive 2 hours education on nutrition.
Most of us have no choice but to treat ourselves.
Sorry to read you are feeling a bit of a failure. Once you start reading and understanding P.A./B12, you will realise the magnitude of this subject. You soon will be a force to be reckoned with again.
Knowledge is power.
🐳
I am reading up on it all the time so hopefully soon I will know more. You would be amazed how little they know about alot of things. I myself am diagnosed with a rare genetic condition that I was born with ehlers dhanlos syndrome. Iv just recently had a baby and during my pregnancy the Dr at hospital told me he was prescribing me asprin. I asked the reasons for this as I was reluctant to take anything during pregnancy and he told me it was due to my auto immune condition, confused I asked him what my auto immune condition was he responded with ehlers dhanlos syndrome. I was speechless it's a genetic condition I was born with. Those of us with the condition are known as zebras and the reason for this is drs are taught in medical school if you hear hoof beats don't bother turning around and looking as it will be a horse. They always look for the most common solution. I think those with b12 deficiency are also zebras
EDS is a known risk factor for B12 deficiency so I hope your GP is looking after you.
Found some articles when searching for "ehlers danlos b12 deficiency uk".
Yes they are different. A vegan can have B12 deficiency for example without having pernicious anemia. The problem with the antibody test is that it has a high rate of negative test results even when someone has pernicious anemia. So a negative result does not mean someone does not have it. This sounds like another failure of the health care system and that you may have to join those of us self-injecting (my husband gives me injections).
Useful information thank you, i am wondering if my partners iron deficiency is cancelling out his red blood cell size. I am trying to convince him to self inject but sadly years of being ill have caused him to have health anxiety and he's nervous about air bubbles and putting a substance into his body. He did say if I get some advice from yourselves on this forum he will consider it
I've just started SI sub cut. The needle I'm using is just 6mm long and the width of a hair. I can hardly see it. It stings a bit as you have to learn technique, but I'm getting better.
I extract the fluid from the ampoule with a much larger needle, which sucks up the fluid and some air. I push most of the air out with the plunge, switch needles and then push very slowly until a tiny drop of fluid pops out the top of the needle. At that point there is no air in the mixture. And it helps that the B12 is bright red so you can see it easily and see there is no air in it. Tell him I said it's a bit "fingers and thumbs" the first couple of times, but then you start to know how to do it and it gets more efficient and its over before you think about it.
If he has health anxiety he should be desperate to get the B12 he needs.
I found some useful articles when I searched "nhs subcutaneous injection".
In UK, I think B12 ampoules are only licensed for IM (intra muscular) injection, some who self treat their B12 deficiency in UK use sub cutaneous injections.
I think it's wise to have first couple of B12 injections carried out by a medical professional.
There is a rare but possible risk of a severe allergic reaction, anaphylaxis.
Forum members cannot give medical advice, only comments from their personal experiences.
With an election in UK likely to happen in next few months, maybe he could talk about his difficulties to his MP also MS (Member of Senedd) in Wales/ MSPs (Member of Scottish Parliament) in Scotland as health is a devolved issue in Wales/Scotland).
"i am wondering if my partners iron deficiency is cancelling out his red blood cell size. "
Have you/he asked his GP about this?
Will try to post documents/articles below when I have time.
I was shocked when I read your mention of gaslighting: I had read the entire account of the interaction without recognizing the gaslighting behind the doctor's response. It brings to mind the Grateful Dead line from Casey Jones:
The trouble with you is
The trouble with me
Got two good eyes but
We just don't see
Sadly, gaslighting can be hard to recognise while it's happening. Sometimes you need time out and a clearer head to process this.
My partner didn't see it at first but he's feeling so ill and had people gaslighting him so long. We got out the room and I pointed out to him if he doesn't have symptoms and isn't suffering from this why on earth does his tongue look like a pie crust and swollen and his mouth full of ulcers, she didn't understand his off balance feeling either. This GP missed the mouth symptoms signs months ago and didn't test for b12, I then made my partner another appointment with a different gp and we actually asked for the b12 test. I dont know if she's ignorant or just not wanting to admit she missed something
The pie-crust scalloped tongue is also a sign of hypothyroidism. Has he had that tested and if so what was the result?
It's perhaps noble to try to educate a recalcitrant doctor. But, as in the song "Turn Turn Turn", "To every thing there is a season," and perhaps it's time to move on, from medical system recalcitrance, to supplementing B12 in the proper way when B12 is not absorbed through the digestive tract, which is to say, injections. That actually is the proper medical course according to the article (from the peer-reviewed medical journal "Mayo Clinic Proceedings"), "The Many Faces of Cobalamin Vitamin B12 Deficiency". When neurological symptoms are present, and not otherwise explained, the proper procedure is injection of B12 every other day, or twice a week, or no less than once a week, for two or three months; if symptoms improve, that validates the diagnosis of B12 deficiency. ("Improve", not "resolve", since continued medical recalcitrance in providing proper treatment can result in serious neurological damage that, at best, will not resolve quickly.) B12 is an essential nutrient sold over the counter in countries such as Germany and Canada. In patients who cannot absorb sufficient B12 through the digestive tract, B12 must be supplemented in a way that bypasses the digestive tract, which is to say, via injection. That is true with or without the medical understanding of an intransigent doctor.
Unfortunately with recalcitrant and egotistical people, for me it doesn’t have to be a doctor.
In situations like that, a flick is switched in my head, sarcasm mode on. It’s 277/480-voltage and I really have to bite my tongue. I will slow my lip pattern down, hoping the person can watch my lips, hear my words. Then that is transmitted and it resonates in their minds. They ain’t even plugged in or switched on. 🤷♀️
My gran calls me a sauce box, she started it though. I’m just carrying it on. 🤣
Love it you sound just like myself, I do the same thing with sarcasm I learnt it from my dad and my son is exactly the same now lol only got myself to blame. I have no tolerance for ignorance. I like to have knowledge as I believe its power, I will hold my hands up when I'm wrong and learn from it, sadly others don't or can't accept. I try to educate as it frustrates me thankfully always got sarcasm to fall back on when this fails 🤣. Thank you for making me laugh during a stressful situation
Oh I have a whole repertoire but I am adding to it. I like you listen to others. My mind is asking to be educated, I crave knowledge. Yes, I get some brain fog, so, use notes for new words.
I’m autodidactic, it’s quite similar to a pterodactyl. 🤣😂 Self-educated but I am a real carnivore. Although, I don’t eat people alive. 🤪
Great to hear it’s a family trait.
Your probably right im just very stubborn and I don't back down easily, I can't stand ignorance. I'm trying to talk him into self injecting he's nervous though any of your own experiences you can share would be most useful so we know where to start and I can hopefully give him the reassurance he needs. Hes been gaslit by GPs and his family for years im so sick of people not believing him iv watched him suffer for years and I just wish others could see what I can
Once he has done it, he will wonder why he was so apprehensive.
You know all the What ifs - what if this? What if that? blah blah blah.
I put them by a pharmacist,before I started. She went through them one by one and in general explained things are in place for supreme safety BUT if they do happen Oh the _____ well. Her sentence is my rendition of it. She did not go rogue & so wonderfully unprofessional on me! 😁
It will be fine. And he will be gifted by the wonderful feeling of freedom.
Hi Nic,
Been thinking about you both & meant to reach out.
I am the one who left you a screenshot of my symptoms.
I don't think it is stupid or unreasonable of her to talk about symptoms disappearing quickly with supplementation. In my opinion, she is right that many symptoms can alleviate during loading doses or within the first few months. But she is holding on too much to it. Every single body is different. And some symptoms can & do take years. I was literally thinking about that yesterday when I kept burning my fingertips a bit, while cooking. Doing things that the lack of healthy nerve endings allowed me to do without thinking, for a long time. My deficiency was found in 2019, so that long.
It is time to let go of the fight with her to educate. It is time. This is the recipe. Concentrate on getting him what he needs. Go every other day for an extended time period, with shots. See if that brings improvement. Enjoy your wee one. Look after yourself. And then when you are on the other side of all that, use your skills & personality to give it a further go. Then and only then, if you are up to it.
The irony of her mentioning b12 deficiency with anemia - besides how it can be hidden as sleepybunny described - is that one of the more highly regarded doctors in b12 research has stated that that is at times the state when things are way more serious, a la not no hope but when irreversible factors can indeed show themselves.
I showed you all the symptoms I suffered with for years. I did have a period of super low hemoglobin (in the 60s /6. 2?). But when my deficiency was found I did not have anemia. It does not matter. And the fact that she does not know that means it is time to look after yourself, your baby and your partner right now.
Sleepybunny probably left this one, just highlighting it.
stichtingb12tekort.nl/engli...
(it is probably mentioned in your Misconceptions about b12 Dutch link from las time, as well.)
It might be good to read some positive outcomes, at this point -
Also Nic, in the book Could It Be b12? there is a case study in there that I am wondering if it might be inspirational for your partner.
If my memory serves me well, it is listed under 'David'.
He too had suffered for decades & was even admitted to a hospital for mental health, twice I believe. Imagine how easy it would have been to give up.
Once he found the correct information he injected daily (I believe) for over a year & made a miraculous recovery.
Being a male case study and the fact that he had a boatload of misdiagnosis and erroneous information thrown at him - while suffering, well it might be beneficial to read.
Macrocytosis (enlarged red blood cells): some quotes from Martyn Hooper's book, where he quotes from research
"Low serum cobalamin levels in the absence of megaloblastic anaemia is also encountered. In a study of 70 consecutive patients with pernicious anaemia, only 45 (64%) had very low cobalamin levels (under 100 pg/m). Anaemia was absent in 13 (19%) and macrocytosis was absent in 23 (33%)." W S Beck, 1991
There are three other quotes there, one comparing using megaloblastic changes to diagnose cobalamin deficiency as akin to using jaundice to diagnose liver disease.
I have always hated injections. But they are such a small price to pay to not feel overwhelmingly tired all the time and to get rid of the tingling and pain in my toes. I was sleeping about 16 hours per day before it was discovered that I had a B12 issue. I have no heard of anybody doing themselves any harm. If you can get them to try every other day for a few weeks and there is an amazing improvement, then it will be easy to convince them to keep going. Just be aware that as the nerves wake up, some people seem to feel worse before they get better. The problem with not getting treatment is that people can end up with irreversible damage to the nerves.
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