b12
Posted , 8 users are following.
well everyone i had my last chance today to do something about my 22 year old sons b12 , we had a apt with the neuro guy , he does not think his tiredness and lack of concentration has anything to do with b12 as its not that low, so am now at a lost what to do next, i know we could SI , but i would like it documented somewhere that he has low b12 any ideas gps not interested either ,acitive b12 - 28 (range 25.1 - 165) serum b12 176 range 191 - 663) these are private labs readings the neuro was not interested in looking at them x
1 like, 17 replies
debbyog1 jazzyanne
Posted
My son went thru a period of listlessness and i am afraid he was using cannabis and other drugs.
Luckily he is now very fit and healthy.
Good luck.
lesley05589 jazzyanne
Posted
The neuro is getting thousands each week to not be interested in b12 ! Of course your son has a low b12 level at 176 . His active b12 is just over the line at 28 on a range that goes up to 165 . I would go and buy a methylcobalamin b12 spray for him . Just put " methylcobalamin spray " in your search engine and you should find a few different ones . Methylcobalamin is an active form of b12 which is not available on the NHS and was reserved for the private sector .
clivealive jazzyanne
Posted
Hi Jazzyanne, I'm not a medically qualified person but am interested in all things to do with B12 as I've had P.A. for 45 years.
Given the ranges quoted your son's active B12 is very much on the low side and his serum B12 is definitely too low. Was his Folate level checked?
You don't say why your G.P. hasn't or won't run a serum B12 test.
What other symptoms beside tiredness and lack of concentration does your son have that would be indicative of B12 Deficiency?
What sort of diet is he on?
B12 can only be got naturally by eating red meats, fish, poultry, eggs and dairy products etc. Some cereal products are being fortified these days.
Who’s at greatest risk for B12 Deficiency?
Anyone at any age, can become B12 deficient. Thus you need to be tested immediately if you develop the symptoms described in this chapter. However, certain people are at an elevated risk. They include the following:
Vegetarians, vegans and people eating macrobiotic diets.
People aged sixty and over
People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).
People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications that can interfere with B12 absorption.
People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.
People with a history of eating disorders (anorexia or bulimia).
People with a history of alcoholism.
People with a family history of pernicious anaemia.
People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).
People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.
People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.
Infants born to and/or breast fed by women who are symptomatic or are at risk for B12 deficiency."
Sorry it's such a long list but can you "see" your son in any of these?
jazzyanne clivealive
Posted
lack of energy (lethargy)
feeling faint
headaches
clivealive jazzyanne
Posted
If it's not your son's diet, he not on any medications like antacids, he's not had surgery or dental treatment involving nitrous oxide, he's not into extreme sports or exercises, not an alcoholic nor is there any family history of Pernicious Anaemia then you must look for other reasons why he is not absorbing B12 from his good diet.
It's also possible that in addition to B12 Deficiency he could be Iron and Vitamin D deficient as both manifest pretty much the same symptoms (as too does magnesium deficiency and Type 2 diabetes) and I would respectfully suggest that you ask your son's doctor to do a full blood test to rule all these out plus serum B12 and Folate level tests before starting any supplementing as this would "skew" the results.
I wish you and your son well.
jazzyanne clivealive
Posted
clivealive jazzyanne
Posted
You say "am sure my gran and mum had undiagnosed PA , my uncle has PA he's is on b12 injections" which points toward your son perhaps also having P.A as it can be "inherited" - does his doctor know the family history?
Although I'm not medically qualified I understand that the "IF" test is at best only 50% accurate and malabsorption of B12 through the stomach can be for different reasons.
I was 13 years between having gastric surgery in 1959 at the age of 17 and eventual diagnosis of P.A. after two Schilling Tests - one in 1968 which was "inconclusive" the second in 1972 - by which time I was a walking Zombie so I've been on B12 injections for over 44 years and I'm still "clivealive" at 75.
marion29181 jazzyanne
Posted
This was my level when my GP began loading doses. I can't understand why your son isn't being treated with those results. Have you tried contacting The Pernicious Anaemia Society for help and advice? They deal with all reasons for low B12, and can intervene when a patient is struggling to get treated. You will need to join the Society, but it can certainly help. Marion
kelly09968 jazzyanne
Posted
I understand why you are focusing on readings and figures, but go with your gut feelings of what is wrong, and buy some high strength methylated B12 lozenges and folic acid from one of the well known websites in the UK, they do work so much so my GP said stop supplementing!? Also continue collecting as much evidence and figures as possible.
Don't leave the poor lad suffering any longer my teens and twenties and my early thirties have been a absolute mess because I wasn't diagnosed until quite recently. Heaven forbid your son ending up in hospital for any stomach issues or blood issues, this would be the time to present your information, and believe me the medics will be all over him! I have just escaped from hospital for the second time in a year for a gut/stomach flair up even though my B12 issue may not have anything to do with it!
Good luck
Kelly
clivealive kelly09968
Posted
There is a danger that supplementing before a diagnosis of B12 Defeciency or Pernicious Anaemia is established will skew the results, the doctor will read them as "NORMAL" and refuse treatment.
kelly09968 clivealive
Posted
Very true! But in this poor lads case it sounds like they already have a lot of blood results before any treatment, and by the sound of it they keep on hitting their heads against a brick wall! So maybe as the old saying goes "the proof is in the pudding" is appropriate I.e self treat on the assumption of you know what's wrong. It's just a option so that this poor lad can move forward with his life.
Interestingly I have seen on various forums that Doctors seem to go a bit nuts if you have high B12 levels and tell us B12/P.A suffers to stop supplementing/treatment, I think there's a couple of reasons why they do this (a) Basically anything extra at high doses can cause side effects, how many times have you taken medication to have side effects, so you end up taking another medication!? (B) doctors don't like high B12 levels because there's a chance that if they are looking for a particular cancer that high B12 serum level is a indicator.
But these reasons are believed to be a little tenuous because B12 is water soluble so any excess the body does not want is flushed out, also in the case of cancer, the high B12 serum levels are only one indicator of a problem, and does not make a whole diagnosis.
I absolutely agree that you have to be cautious when supplementing folate, and I would always inform docs what you are doing, to prevent any panic.
clivealive kelly09968
Posted
I agree entirely but I was alarmed when Jazzyanne said "am sure my gran and mum had undiagnosed PA , my uncle has PA hes is on b12 injections" so if there is a likelyhood that her son has P.A. then it's for life, he should be treated by the NHS and self supplementation will be for life too if his doctor refuses treatment on the basis of high B12 levels
jazzyanne clivealive
Posted
kelly09968 clivealive
Posted
Im totally with you on getting NHS treatment, but as we all know the NHS and doctors are not perfect, and everyone gets stuck on facts and figures, that's why it is very hit and miss if you can get NHS treatment. As I well know and others know it's a real pain in the arse getting a blood test to tell you what you already know (your levels are low) then getting the results, followed by the inconvenience of getting the injections, that's only if you are in those magic figures! Unfortunately it doesn't leave those who get caught up in the "magic figure conspiracy" with much choice to self medicate, also sometimes its more convenient to do it this way.
But don't worry Im not having a moan at you because I know your a sensible educated gent, I'm just having a bit of a winge about the denial of life improving vitamins from people who need them!
Thanks for all the useful information you put on the forums!
clivealive kelly09968
Posted
It took thirteen years after removal of two thirds of my stomach due to a perforated peptic ulcer at the age of 17 until I was 30 before I got a diagnosis of P.A in 1972 after two Schilling Tests (one "inconclusive" in 1968) and then I was "threatened" with a diet of raw liver three times a day or cyanocobalamin every four weeks for the rest of my life.
Down through the years I noticed a return of symptoms prior to my next B12 jab but when I mentioned this to my doctor he simply smiled and said "It can't be your P.A. because your getting the injections" and basically told me "it's all in your mind - now go away".
So I joined the Pernicious Anaemia Society and my first question on their (then) forum was "Am I the only person in the world to feel... etc". The response was incredible and No! I was not alone.
It has taken me the last six years up to July this year to "persuade" my "one size fits all" G.P. to at last increase the frequency of my injections to every three weeks because of the return of neuropathy in the run up to my next injection.
I always "resisted" suggestions of self supplimentation because I wanted to "educate" my doctor so that he would be more sympathetic to the next P.A. patient who "felt the need"
Thanks for your kind comments and I wish you well for the future.
kelly09968 clivealive
Posted
Hi again, you truly have had a extremely bad time of things to put it mildly, and it does seem every time you make progress of sorts, you get kicked in the guts again! (Exscuse the pun) and apart from the ocassional doctor who listened it sounds like no one assisted you.
My story starts over 20 years after yours, where you would of thought doctors would of been more open minded!? Basically I was a loopy, depressed teenager and I guess well meaning GPs at the age of 17 had me on Prozac, which sent me even more loopy, this was before Doctors were warned that Prozac type drugs should not be given to under 18s , and this cycle continued until my late 20s all the time I was knackered and I couldn't hold down jobs, but all I kept on getting is you are depressed so that's why you are knackered and can't do this in your life ect. Then finally at 28 a psychiatrist diagnosed my type of depression as dysthymia and put me on a medication which chemically is related to amphetamines, so no wonder I seemingly got better, I certainly was not depressed anymore but I was still tired, but it wasn't a problem lifestyle wise because I decided to go to university, so for 3 years being disorganized and knackered was kind of a accepted norm, then I had to re-enter the real world so the cycle of trying my best to function restarted and some how I started my nurse training, and I eventually crumbled to bits again and had to leave my training. At some point after this a bright spark G.P worked out that I was B12 deficient, I owe them a lot for this! But little did I realise that like you it was the start of another struggle to get treatment! I just think it's sad to think what I could of been, and now that I know what's wrong I still have to fight along with thousands of others to get this Vitamin, which could change the course of so many people's lives.
clivealive kelly09968
Posted
It truly is a vicious pernicious circle at times. I too went down with depression during the late1960s for which I was prescribed the then ubiquitous Valium, plus Librium and Tofranil. In addition I was given an anti-spasmodic antacid containing Belladonna so you can well imagine what that did to my already compromised (from surgery) B12 absorption problems.
I can't remember but I nthink I posted "My P.A. Story" on my profile page.