Dear God this is so wrong in every level, I have not been given a injection yet, I was told to go home and take a multivitamin and that I did not have PA as my partial cell antibody test came back negative, my vit B12 was 179ng was folate 1.4,
Iโm bedridden sever fatigue,cannot walk lost bladder function pins needles hands feet reflexes brisk some limbs absent others, personality change, Iโm so pale I look like a map! And I read your story and think omg even when and if I do finally get treatment, you got to go through what your going through and literally Beg and plead with them for your medication! Beyond disgraceful๐คฌ Iโm so sorry for you with all you have to cope with as well ๐๐ This should not be happening, Itโs negligence on every level
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Steph0077
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Thank you Iโm going to been on the Multi vits for almost 8wks on GPs advice, not sure if they doing anything but will now request another blood test and push for these injections ๐
Hi Nackapan June 25th 2022 my b12 was 179ng and folate 1.4, in March 25th 2022 my b12 was 250ng folate 2.2
I have been on shop bought multivitamin for 8wks on there advise (GP) and Iโm worse than ever now, I will be demanding bloods to be done asap now to see what levels are now and will absolutely be taking them to task about injections then will be changing GPs I have learnt a lot on here today absolutely amazing and so very empowering ๐๐ผ
Worth checking carefully what's in the multivitamins as some vitamins and minerals may cause issues if taken in large amounts.
How much b12 has the multivitamin got in it?
B12
March 250 ng/L
June 179 ng/L
I wonder what they expect your results to be in a few months time.
Symptoms diary
May be helpful to keep a daily symptoms diary which tracks changes in symptoms over time. Can be useful evidence of deterioration or improvement in symptoms to show GP/specialists.
Note when any treatment is received and how much.
Note any blood test results.
Family History
Is there a family history of PA , coeliac or other auto immune conditions?
If yes, does your GP/specialists know the family history?
Have you had any recent thyroid tests?
Forum members often report thyroid issues.
In UK GPs often only test TSH which won't give a full picture of thyroid function.
There are other thyroid tests that they or a specialist can order.
From personal experience, it is possible to have severe B12 deficiency symptoms with an in range serum (total) b12 result.
Functional B12 deficiency is where there is plenty of b12 in the blood but it's not getting to where it's needed in the cells so the person develops symptoms of B12 deficiency.
May be one reason why Vitamin D levels are low on this forum is because majority of b12 sufferers are housebound, lack energy to be able to get outside !
Its like a jigsaw bit by bit we connect the dots! And yes I hear your anger I feel it I have it! So we pay national insurance all our working lives to pay the wages of doctors big wages too to have them educated to know whatโs wrong us and such a easy thing to detect really if you are trained, unlike rare conditions or illnesses we are talking Vitimins here ๐and they fail miserably leaving us laymen to navigate and educate ourselves where they have failed๐ฃ and then they turn on us like a pack of dogs for knowing more than them ๐คฌ itโs beyond ironic itโs darn right disgraceful they are dicing with our lives literally! Yes like you my vit D was the first thing to point to malabsorption my vit b12 was also obviously low to those who knew what they were looking for, but unfortunately my GP didnโt have a clue! Still doesnโt even now whenโs theyve gone well below there deficiency table!
I been reading about functional b12 deficiency, Iโm not sure how it presents tbh, I am bit confused by the data on the net, My sons levels are 420ng b12 and folate 2.7 heโs got so many symptoms Iโm wondering if this the root cause to the them?๐ค
I just love you ๐ your truly amazing so precise and easy to understand, Iโm dyslexic incase you hadent realised lol and the way you explain things is so helpful for me, Iโm ready to take them on ๐๐ผ๐all you have written is what I have needed to understand My RDW on FBC is 15 it should under 14 has been steadily climbing, my MCV is 86, I am pale as pale can be look like a dead person ๐ณ I know my iron was low but they said nothing to worry about not anemic!
โIf a person has iron deficiency and B12 deficiency( and/or folate deficiency) then the red blood cells may appear to be normal sizeโ
I believe that is me ๐I went a&e and literally laughed at me told I wasent anemic and refused to test my b12! (That was the week b4 I Junes blood test once GP mentioned PA to me) Told me it was my ME/CFS I also had raised white cells which they could not find cause for and my heart rate was 140 bpm at rest I had no idea until they told me only went down when they gave oramorph! They discharged me and told me itโs sycosomatic!
Many forum members have a diagnosis of ME/CFS/Fibromyalgia somewhere in their medical history including me.
My experience was that once ME/CFS was diagnosed, investigation into the underlying cause of my symptoms more or less stopped. In my part of UK, a diagnosis of ME/CFS was treated more as a mental health diagnosis.
I felt it wasnโt this when the Rhematolgist diagnosed me, I was in and out of her office in record time ๐ณ Iโd sent her a list of symptoms prior to the appointment, the red flags for b12 deficiency that I sent her would of been *burning sore swollen tounge
*blurred vision
*white finger nails
*pins needles hands
*numbness hands
*Chronic dibiltating fatigue
*urinary incontinence
*yellow tinge to skin
*very pale transparent skin
*mood swings
*balance problems
*dizzyness
*cold arms and legs
*Sensitivity to light
*hearing rushing sound in my ears and heart beats
That was the majority of things but she diagnosed ME/CFS and fibromyalgia ๐ณ
Sleepybunny, my vitb12 dropped from 256 ng/l to 179ng/l in 3 months is that like normal to deplete so quickly do you know? with any of reasons for b12 deficiency like PA malabsorption etc, Have you heard of it going down that quick and do you know which cause would be most likely? thank you in advance, I am worried like you pointed out I wonder how low it will be now ๐ณ
GPs are too focused on numbers, if you have the symptoms of deficiency they should be treating you even if serum (total) b12 is within range.
Symptomatic but normal range serum B12?
Summary from BSH Cobalamin and Folate guidelines includes the statement
"In the presence of discordance between test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment"
NICE CKS guidance on B12 deficiency and Folate deficiency includes the statements
" Note: clinical features of vitamin B12 deficiency can occur without anaemia and without low serum levels of vitamin B12."
"For people with neurological involvement
Seek urgent specialist advice from a neurologist and/or haematologist.
Ideally, management should be guided by a specialist, but if specialist advice is not immediately available, consider the following:
Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months."
If GPs say an outright no to treatment, try to get them to explain why they are saying no. Knowing the reason makes it easier to fight against any refusal.
For example if they say "It's against the guidelines", ask them which guidelines and try to get exact title so you can find guidelines yourself and check for yourself.
One way you might get hold of your local guidelines is to submit a FOI (Freedom of Information) request to the GP surgery asking for a copy of local B12 deficiency guidelines they are using. Submitting FOI to GP surgery may irritate them.
Might be better to submit FOI to ICB (Integrated Health Board)/Health Board asking for a copy of or link to local B12 deficiency guidelines used in their area.
As you have submitted a complaint you may find that the relationship with GP deteriorates further so I hope you are able to change GPs soon.
As far as I know, GPs are not supposed to get rid of patients just for making a complaint, although I think it happens.
From personal experience, GPs can have very subtle ways of getting rid of people ......
Thats farcical. 179ng B12 with neurological symptoms is not a multivitamin situation, it calls for prompt treatment with injections to rapidly get B12 into the body to prevent further damage and start the healing processes. Your folate level is similarly disturbing. There is virtually NO RISK to an injection and they are insanely cheap to the health service. This is medical malpractice. I honestly think there should be criminal charges for medical personnel who treat B12 deficiency in this casual, offhand way. Like many others here, I was misdiagnosed myself and still suffer the consequences. This is totally unacceptable.
I once searched online for "legal cases B12 deficiency UK" and came across a UK solicitors firm that had a case study of someone who had suffered from delayed diagnosis of B12 deficiency.
Thanks yes it definitely seems that way, I canโt actually believe they can justify this after all the information I have now read, I so exhausted but I have done 2mnts since my last appointment on multi vits, they didnโt even tell me which ones to buy, but Iโm now going to ask for another b12 blood test and push for injections and hopefully find another surgery ๐
Thatโs so kind of you what wealth of knowledge you are โค๏ธ Iโm going to do that Friday๐๐ผ tomorrow though I will demand a another vit b12 folate ferritine and FBC blood test and an explanation in writing of why I was not given the injections reading all the things you sent me (which are invaluable by the way) I cannot believe they have actually done this to me it is so wrong, I am still going through all the links you have sent they are brilliant, I have practically all the neurological ones and swollen burning tounge, they treated me oral thrush 6 times this year but it wasent oral thrush, then said I have glossitis ๐ my vision is blurred 24/7 and I have suffered bouts of virtigo for which they said theyโd give me pills I declined as I said you donโt know what your treating!im also booked into have a coronary CT scan on Monday because of angina ๐ณ It all makes sense now, shocking in todays age a DR cannot work out that this could be B12 deficiency! I watched a film today it was a real eye opener I put the link below incase you have not seen it brillliant m.youtube.com/watch?v=OvMxJ...
That film struck such a chord with me! There's a part where a B12 deficient patient was diagnosed with "essential tremor" - that's exactly what a neurologist said when I showed her my own hand tremor. So true to life ha.
Doctors receive 30 minutes of training on B12 in medical school. Yet B12 absorption is one of the most complicated processes in the body and has multiple causes and roots.
It's never just diet. Unless you were a vegan for 10 years with no supplements.
What range are they using?
If you have to, go and get a private injection from a cosmetic health clinic. Then learn to self-inject every other day for the next year.
Do it soon before the symptoms get worse or you stop thinking straight.
Agreed but its also possible to become deficient on a vegan diet if you are supplementing but not supplementing adequately, as I know too well. For example if one does not know much about how B12 is absorbed you might look at the daily requirement, which is ~2.5mcg and think oh that is so low, I can cover that with a 250mcg tablet once a week, since thats 100 times the daily requirement. Totally logical right.... if you don't understand B12 absorption. That was me 7 years ago.
Quite recently a doctor and a vegan dietician even told me this was an adequate dose. But its not , because of the tricky nature of absorption- roughly 1.5-2mcg from intrinsic factor + ~1% passive absorption. At best, through unknown mechanisms you might get 6mcg, enough maybe for 2-3 days at best, but not for a week! And then after 5 years and getting neurological symptoms, you encounter doctors who, after testing, advise you to reduce this dosage to once a month, because they understand even less! Voila, deficiency with serious neurological damage.
Vegans actually need a chart like this one to understand how to dose correctly to avoid deficiency : veganhealth.org/daily-needs... . By no means is it straightforward.
I know dietary discussion is off limits here so will just share this if it's of interest.
In 2019 an international coalition of 'Medical doctors and nutritionists' supported an EAT Lancet review that is suggesting the world reduces meat and fish intake to reduce the effects of climate change. But their calculations of that reduction came in at around 15mcg per week - around 2mcg per day.
Then this was peer reviewed and said "This review showed that a total intake of vitamin B12 from the diet between 4 and 7 ฮผg/d is associated with normal plasma vitamin B12 and MMA and thus appears to be adequate to maintain body vitamin B12 status in adults."
So EAT Lancet were way out if they think 15mcg a week is enough meat to consume. When true scientists suggest we need 4-7mch PER DAY to be healthy.
And my comment is to suggest that it's not just diet but the impact of lack of intake on the gut, including the stomach. I belive lack of intake can contribute to autoimmune disease.
Pickle500, agreed, i think 6-7mcg is the right target to hit, that's what I found digging through papers myself, I think the low numbers like 2mcg a day are misleading/dangerous, even discounting the complexities of absorption processes. No reason to aim so low with something where life and good health hang in the balance.
Thanks completely agree after all I have read today, wish Iโd read all this a couple of months ago e we vff Ed n though I donโt think they would of budged then, not sure even if they will now tbh feel like the relationship has broken down and they are closing ranks, they are now being really difficult to my son, literally feel like I need another doctors surgery, problem is this lot where I live have amalgamated with each other so they are all linked ๐ฎโ๐จ
Just to add that there are other possible causes of B12 deficiency, some of which are listed in table I here : onlinelibrary.wiley.com/doi...
Although investigation into the cause should continue, what is NOT in doubt is that you have a serious B12 and folate deficiency which requires immediate treatment (and that means B12 injections according to virtually every medical guideline I'm aware of).
Critical bodily functions require adequate B12 and Folate to function. Without this system running correctly the body will have problems with DNA and RNA synthesis, red blood cell formation and maintenence of the myelin nerve sheath that protects nerves (this will cause nerve damage if not corrected). Neurons which include the nerve cells of the brain are also affected and this will cause psychiatric symptoms- memory problems, depression, anxiety etc. Most doctors don't understand this and often diagnose psychiatric problems that are most likely caused by the B12 deficiency itself!
Ultimately almost every important process in the body is dependent on this system working. Without it's smooth functioning there is a risk of irreparable damage. The body considers B12 so important it stores a supply of 3-5 years worth in the liver!
But if nerves are damaged to the extent of axonal death they do not recover. This is as serious as it gets! I hope they do not get away with this and that they see sense to treat you promptly and adequately!
Point 1 is about under treatment of B12 deficiency with neuro symptoms present.
In letter, may be worth mentioning that untreated or under treated B12 deficiency increases the risk of permanent neurological damage including damage to spinal cord.
PAS article about SACD, sub acute combined degeneration of the spinal cord
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Thank you so much for your reply so very helpful and so informativeI have been reading the links you sent me all day thank you โค๏ธ, I am having a really hard time with my GPs currantly they have labelled me as health anxiety nut nut, I canโt find it in myself to be nice to them anymore, I just have no tolerance of them, they literally lie, and conveniently do not put serious things on my notes I have said to them and that they have identified in the consults, which I have had to follow up with an econsult clarifying exactly what happened in the f2f consultation, they even lied and said they did a neurological exam which they did not, I have a problem with my spine also, I have seen the spinal specialist last week who labelled me as having PTSD lol Iโd never met him before in my life! Nor have I got a diagnosis of PTSD and he said my pain was all psychosomatic , heโd read my notes prior to seeing me which on my significant history says paracetamol overdose, that was 8years ago and I have totally moved on from that low time of my life, he probed into why Iโd taken it saying something very traumatic must of occurred, but he already knew because he had read my notes! It was due to abusive relationship and I was very uncomfortable with his questioning asking me how long ago it was and how long Iโd been with my partner for he even asked him if he knew ex partner!! My partner couldnโt believe the assumptions questions and diagnosis he was coming up with, and my partner was clearly annoyed at his questioning , and seeing as we were only there for my spine, after 40 mins of psychoanalysis stripping, he eventually examined me to discover brisk reflexโs and absent reflexes, and weakness in my limbs which constantly go numb and pins n needles, he then asked me if Iโd had any injury to my spine or neck spine, which I have not he then mentioned I may have a spinal cord compression or impingement and that he would MRI my spine in 7-8 wks, I told him about the vit b12 and folate deficiency but he said my GP knows what they are doing! and ushered me out of the office, Iโm now wondering if this could be combined subacute cord degeration, he has since wrote to my GP saying the findings of reflexes and weakness and he was going to do a mri to rule anything out, he also mentioned my previous abusive relationship and he stated I clearly have health anxiety! The receptionist read me the letter I asked for a copy of it but they said I had to put that in writing! So sorry for the long post but this is a little of what Iโm dealing with, Iโm so exhausted tbh, but reading what you sent has given me hope, I have found a dr in Cambridge DR K Cambridge iron clinic who I sent blood tests to he said there is no doubt I have pernicious anemia and heโd treat me and teach me or my partner to self inject and that Iโm iron deficient also and will needs an infusion but canโt see me for a month but the cost is ยฃ850 plus travel and hotels etc I live 250 miles away from him so it would work out at around ยฃ1350 we just cannot afford that, so itโs bk to the drawing board, I am now taking multivitamins I had to buy them myself they gave me no prescription, so only hoping they are right for me, I been on them 8wks, with no change in symptoms feeling like Iโm getting worse tbh, but I done it to appease them , I think now they should retest me and see if I gone up or down then maybe they will offer me injections ๐
"conveniently do not put serious things on my notes I have said to them "
If I wanted to ensure something was put in my notes I would put the info into a brief letter to the doctor and include a request that a copy was filed with my medical notes.
It's my understanding that in UK, letters to doctors are supposed to be filed with medical notes.
Have you considered asking to record appointments/conversations with doctors.
Best to request this prior to appointment in a brief letter to GP/specialist along with clearly stated reasons why you need to record it eg fatigue/memory/cognitive issues.
They are unlikely to be keen but you should be allowed to on disability grounds.
For a face to face appointment, ask (in a letter) if you can take someone with you and make sure it is someone supportive who understands B12 deficiency.
It's my impression that doctors are likely to be kinder if a witness is present.
You are not alone sadly in your experience. I was told my symptoms were psychosomatic, that I was a hypochondriac and that my symptoms were due to depression and anxiety and I was sent down the mental health route.
This is despite me having many typical physical symptoms (over 50) and a previous low B12 result, think it was 140 ng/L serum B12.
I was depressed but health professionals didn't listen when I said the depression was reactive eg I was depressed because my physical symptoms were stopping me living the life I wanted and that the depression was not causing the physical symptoms.
I said to every specialist I saw that I thought there was one underlying issue causing the majority of my symptoms. I asked virtually every one whether it could be B12 deficiency.
I was also snapped and shouted at by a GP and a specialist when in a very vulnerable state.
If there is any chance in the future of you making a formal complaint. I suggest you get a full set of your medical notes now.
I know of two people who made formal complaints against NHS (not B12 related) and both said that things they expected to be in their notes weren't.
More about writing letters to GPs/specialists
(See letter writing link in my first post on this thread)
1) Letters avoid face to face confrontation with GP/specialist and allow patient time to express their concerns effectively.
2) Keep letters as brief, to the point and polite. Harder to ignore a letter in my opinion.
3) When a letter is sent to GP, worth including a request that GP practice sends written confirmation to letter writer that they have received letter. Proof a letter was received may be useful if there is a need for a formal complaint in the future.
4) My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are a record that an issue has been raised. I included a request in letters that a copy of letter was filed with medical notes. Useful to have a paper trail in case there is a need for a formal complaint. Keep copies of any letters sent or received.
5) Letters could contain some of the following
relevant test results
date of diagnosis
relevant family/personal medical history
quotes from UK B12 documents
requests for referrals to relevant specialists
The shorter the letter, the more likely the GP/specialist is to read it in my opinion.
"Iโm now wondering if this could be combined subacute cord degeration"
If your MRI is delayed, can you consider going privately for an MRI?
NHS doctors may not accept results from private doctors but something significant from a private doctor may be enough to nudge them into doing something.
Might be worth joining PAS and asking them for useful info to pass onto your doctors.
2) Get hold of the local B12 deficiency guidelines for your part of UK and compare them with other UK guidance eg BNF/NICE CKS/BSH
Search forum posts for "local guidelines" or submit a FOI (Freedom of Information) request to ICB (Integrated Care Board) /Health Board.
CCGs (Clinical Commissioning Groups) were replaced by ICBs (Integrated Care Boards) in July 2022. It is likely that they will take on the clinical guidelines of the CCGs they replaced.
There may be useful quotes from articles/documents below that you could include in a letter to GP.
UK B12 documents
NHS article about B12 deficiency (simply written, lacks detail in my opinion)
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment (over 40 pages).
In someone with both folate and B12 deficiencies, B12 treatment would usually be started first.
Treating a folate deficiency without treating a co-existing B12 deficiency can lead to neurological problems.
See Cautions section in above link which says that folic acid should never be given on its own for PA (Pernicious Anaemia) or other megaloblastic anaemias caused by Vit B12 deficiency as this may lead to SACD, subacute combined degeneration of the spinal cord.
Hi yes he does he does, diagnosed me himself with peripheral neuropathy, and glossitis is sending to urology for incontinence, and neurologist but has failed to mention all the neurological symptoms he has identified ๐ณ
Maybe you could write a short letter to neurologist stating your neurological symptoms and asking for a copy of the letter to be placed in your medical notes.
This should ensure that the neurologist has a list of your symptoms prior to appointment, take a copy of symptoms to any appointment.
If you have concerns over possible SACD then you may want to mention this in letter. May also be worth mentioning any concerns you have that treatment has not started yet.
When you have an MRI, you could ask (in writing) for a copy of any report that hospital sends to GP. You could hand the request in at Reception when you arrive for MRI.
As you have a diagnosis of health anxiety, you may find that some health professionals are dismissive of your concerns.
You may also find that writing letters irritates your GPs, other doctors. Weigh up the risk of irritating doctors with the risk of what could happen if treatment is not started soon.
Keep copies of any letter written.
I had pressure put on me to leave one GP practice so be prepared for difficult relationship with GP .
If you are now on folate treatment and your B12 injections have not started worth discussing (maybe in a letter) with GP that starting folate treatment without treating a co-existing B12 deficiency may lead to neuro damage including SACD.
See Cautions section in above link which says that folic acid should never be given on its own for PA (Pernicious Anaemia) or other megaloblastic anaemias caused by Vit B12 deficiency as this may lead to SACD, subacute combined degeneration of the spinal cord.
There may be private GPs in your area who offer B12 jabs.
Treating yourself can make it tricky to get treatment from NHS especially if you get B12 injections privately and NHS tests your B12 again before starting treatment and finds B12 levels have risen.
I was forced to treat myself after all chance of NHS treatment ended.
"my partial cell antibody test came back negative"
About 10 - 20% of people with PA test negative on parietal cell antibody test (PCA).
Have you had a test for IFA (Intrinsic factor Antibody) and a gastrin test?
Any chance of internal parasites eg fish tapeworm?
One potential sign of internal parasites is a raised level of eosinophils, a type of white blood cell. Results for eosinophils can be found with Full Blood Count (FBC) results.
Amazing stuff thank you again ๐ they gave me a fit test (fecial) and autoimmune test for celiac a h pylori again negative, but no IFA or Gastric? Are they blood tests? Did any of yours ever come back positive? I will check these out now, your brilliant thank you so much
There is a window of opportunity in B12 deficiency to avoid permanent damage.
NHS refused to treat me as all my serum B12 tests apart from one were normal range and IFA test was negative. I asked questions, wrote letters, gave info to GPs and was still forced to treat myself.
I've already mentioned some of my spinal symptoms.
I had also developed dementia symptoms including
forgetfulness
couldn't get right words out
lost ability to do mental arithmetic
strange behaviour eg car keys in the fridge, boiling the kettle without any water
couldn't follow complex stories in books, tv etc
ability to learn to use new technology affected
When I realised I was heading for permanent dementia and spinal damage, I realised I needed to treat myself.
Apologies for exhausting you with all the links and info but I wanted you to have everything in one place.
If you update the forum at some point on what's happened it may be better to start a new thread as responses on older threads sometimes get missed.
Misconceptions
GPs, specialists and other health professionals sometimes have misconceptions (wrong ideas) about B12 deficiency.
I think it's helpful to know some of the common wrong ideas about B12 deficiency among health professionals so you're prepared in case you meet ignorance.
B12 article from Mayo Clinic in US.
The Many Faces of Cobalamin (Vitamin B12) Deficiency
No please donโt be sorry I love them so brilliantly informative, you have empowered me to go and literally save my life, I was feeling so low and insignificant, before getting on here, sadly Iโm in bed most of the time so my phone and iPad are literally my lifelines, itโs terrible to except this is your fate, I said to my partner a few weeks back by the time they actually understand whatโs wrong with me it will be too late, negative thinking I know but I feel that poorly itโs like Iโm in palliative care, I know how these doctors work when you start complaining, my son about 10 years ago had all these lymph glands come up on his neck they were literally the size of golf balls, I took him to the GP on so many occasions he was losing weight and so tired, I ended up bringing my mother with me, for support because the Gp was getting worse with every visit, I took him to a&e to be told to go bk to my GP ๐ฎโ๐จwe saw another GP in the practice she was worst than the first so patronising saying that she thinks Iโm the problem, enough was enough, I ended up taking him to see a private haematologist explained all his symptoms and he took his blood, within 24hrs he called to say do not let him go to college as he has acute glandular fever, EBV, but also has antibodyโs to EBV so wanted to do a biopsy, on his lymph nodes as itโs quite rare to get it twice, I was shocked,he took the biopsy under GA where he stopped breathing, he neeeded way more oxygen than anticipated and they had to administer drugs to get him bk up, very scary when they told him and myself this ๐ณ he also explained his spleen was enlarged and could rupture if he fell ,so he had to rest,it was a long recovery for him he already had ME/CFS and under active thyroid diagnosis prior to this, he was just 16, I ended up looking at his notes I wasent allowed a copy, I had to sit in the room with the practice manager, so degrading! But what was on his notes horrified me, on practically every visit at that time weโd been attending it stated โCHILD WELL MOTHER SICKโ ๐กunbelievable, I got a letter of apology from the GP in the end, but we still moved GPs, The haematologist new the GP who failed to diagnose my son and said to me oh donโt be hard on him things happen! I was greatful to the haematologist for his help with my son, but was annoyed that he was defending this GP who had belittled my sons symptoms and me, making out that I was nuts, wrote those things on my sons notes and missed completely a illlness that is so easily diagnosed putting my sons life at risk! Not mention the vast amount of money I had to spend which was worth every penny but could of been totally free on the nhs! I was a single mother on a low income at the time.The GPs are now making my sons life difficult so much to write but the long and short of it is they are messing him around terribly he gets social anxiety and is a very polite unassuming lad, I have tried to help him as his health is not so great at present either, he was diagnosed with microscopic colitis last year but is still having stomach problems despite the steroids they gave him, heโs belching constantly and has very painful joints, heโs had covid twice in 4months pretty bad too, after the GP messing him about 3times I went with him poorly as I am I couldnโt watch him suffer, we organised to see a certain GP (which heโd organised on previous visits as we avoid 2gps there, there are 8 in total so no big deal, but on both occasions he went theyโd switched him to seeing the GP he did not want to see because of past bad experiences with them) I confirmed his latest appointment with the practice manager who guaranteed heโd be seen by a different GP we got to find yet again theyโd switched him bk to the GP he requested not to see ๐ฎโ๐จ unbelievable tbh, 3 times in a row and this time with a guarantee from the practice manager!! We had no choice to see this GP who was so dismissive as per usall, my son also has something with his testicals so I left the room for him to be examined, when my son came out he said that was awkward when I was the leaving the room the doctor said donโt worry itโs difficult as I know thereโs problems with your mum!! Iโm now debating whether to make a formal complaint! We have access also to our medical records now online system online itโs called so we logged in the next day to see what the doctor wrote in his notes but there was nothing there! Not even that heโd attended ๐ค
If you do have any concerns about your son's b12 levels, I would suggest joining and seeking support from PAS. Parents of children with suspected B12 deficiency are not always listened to.
There have been cases of parents, of children with suspected B12 deficiency, being diagnosed with Munchausen's by Proxy, a serious mental health condition.
Articles about Children/Teenagers and B12 deficiency
If you have time, look at values and mission statements on your ICB (Integrated Care Board) or Health Board website. There should be something about patient experience.
Sleepybunny, just read the above, is colitis another thing that affects B12.
You are not alone with awful treatment today steph0007. Best you take someone with you when you go to the doctors. It's a credit to you looking after your children while feeling poorly yourself.
I have read that too, my son has a tremor in hands also now like me has back problems too, his knees are really painful too, what I forgot to mention is my grandmother had pernicious anemia and was injected regular and all my dads sisters have Pernicious anemia ๐ณI found that out the other day! Heโs 24 lol still living at home him and GF saving for deposit for a flat, he suffers with anxiety so doesnโt really like phoning the GPs himself, but I know what your saying about munchousems, the thing is every time I have advocated on his behalf it comes back with something wrong, Iโm a worrier by nature and they know this, but I know given our family history that we are indicating a genetic condition maybe a couple, but itโs how to get it checked out without sounding like Iโm neurotic lol I just want him to have energy to live a normal healthy life where heโs not struggling, and if finally we have worked out whatโs wrong with us and Vit b12 shots will make us better Iโll take the Munichousens label all day long ๐๐
"my grandmother had pernicious anemia and was injected regular and all my dads sisters have Pernicious anemia "
Are all your doctors and your son's doctors aware of the family history of PA?
I suggest you mention the family history of PA in any letter to GPs/specialists and when talking to doctors.
Has he had a test for Intrinsic Factor Antibodies (IFA)?
It is still possible to have PA if IFA test results or PCA (Parietal cell antibodies) test results are negative.
About 50% of people with PA get negative test results in IFA test.
About 10 - 20 % of people with PA get negative results in PCA test.
I found one set of UK local B12 deficiency guidelines that suggested a few people with PA may get negative results in both IFA and PCA tests.
"that I did not have PA as my partial cell antibody test came back negative"
Is it definitely the PCA test you had?
The reason I'm asking is that the PCA test is not recommended as a diagnostic test for PA in UK.
The IFA test would usually be the first line test for PA in UK.
If you have the time and enough energy, try to access older medical records.
There was at least one forum member who had a positive result in IFA test and PA diagnosed in the past but was never told at the time and they only found out when they accessed their medical records.
Did you know that birth/maternity records are kept until the youngest child of mother is 25. At some point I may access my own birth/maternity records as I suspect I was low in B12 during pregnancy and not told about it.
Hi Sleepybunny thank you again as always, your advice and information is the best, I am in the process of changing the GPs we sent a letter of complaint yesterday for my Son, especially for the fact the GP has failed to put anything on the notes like his last appointment never even happened donโt think they can even do this? Iโm in the process of doing mine also, I have been looking into getting someone to advocate on our behalf, who knowledgeable on b12 I have seen in one the links you sent that PA society does that is itโs a desperate situation, I have just paid to join them so will be phoning to ask for there support, Iโm not sure what the GP is playing with regards to my son but I have a gut feeling they are trying to create something and I have made them aware of this in the letter put togeather, itโs a very stressful time one that I donโt want or need ๐
Thank you so much I will try her as well ๐๐ผ I am very poorly today Iโm debating going to A&E but after my last experience itโs such a gamble, I am scared itโs going to be a terrible ordeal with no result at the end ๐ณ
Sorry just wanted to again say thank you for the links they are so very helpful, And have given us a great deal of encouragement to move forward with this ๐๐ผโค๏ธ
Aah thank you heโs 24 lol but has anxiety issues so I advocate for him when I can, his Girlfriend is great too she knows he struggles with anxiety sheโs a trainee solicitor so that helps too sheโs great with laws and protocols ๐
I am on another PA group on Facebook, and I've been told to also be checked out for things like coeliacs because absorption issues aren't only caused by PA.
I wonder how many people are diagnosed officially v's a process of elimination? I have self diagnosed but doctor is digging his heels in re my negative IF result. won't perform any other kind of PA test as says there is no other he can do in the surgery setting. I am now awaiting a second opinion from the consultant haematologist.
I had a partial antibody test that came back negative so they said I donโt need injections just take a multi vit? My level was 179ng vitb12. and 1.4 folate both below our labs threshold of b12 200ng and folate 2.1 what are your levels are they similar?
Did they do a instrinic factor test or the MMTHFR test? It took a long time for me to get a diagnosis, but once I did, treatment was fast. My b12 was 90 but can't remember what my folate was. My intrinsic factor test was suppose to be 0.0-0.1. Mine was 98.00. That clinched the diagnosis. Be careful of what you take before bloodwork. Vitamins can mess up tests. I was lucky it was my oncologist who thought to run a b12 test. My primary took over from there. Make them listen to you. If not, find a doc who will. I was down to 80 pounds, couldn't stand up without falling over, couldn't remember simple words and was pretty close to agoraphobia. It was awful. Best of luck to you
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