I'm 18. I finished my six B12 loading doses around three weeks ago. I initially asked to be tested around a year and a half ago for it to be shaken off by my GP so I can only imagine my level has been drip-dripping down since then - I was tested to find my B12 level was only 128
I felt worse immediately after starting the injections and I certainly don't feel a whole lot better. My main problems prior to diagnosis were terrible concentration and bad bowel/digestive issues and I had a big anxiety relapse just over two years ago, potentially caused by b12 although I'm on antidepressants for this anyway. Now I'm just so much more fatigued. I can lie down in broad daylight and with the TV going and easily fall asleep. It's incredibly out of character for me. I might have been able to do that before only if I had a bad virus or something
I understand that it takes a while to feel better but I wasn't expecting to feel literally no improvement, especially not to feel even worse. Its depressing because while undiagnosed it screwed up my A level exams and now I'm reaching the point where I really should be at least part time employed and I just don't think I'd be able to handle it. It's killed my ability to function which hurts as I was a high achiever prior - I got 9 As and 3 Bs at GCSE
As far as I know my folate came back normal, as did my blood count. I'm vitamin D deficient and am supplementing for that
Any ideas/advice?
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joannu
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how are you doing now Nackapan? You have been in my thoughts a lot as my struggle with this awful disease is similar to yours....I hope you are seeing improvement. x. J in Ireland
Missed this! I'm still struggling . It's a month since loading doses have stopped. The first 2 weeks were awful very ill with neurological symptoms which were scary and awful headaches. Now I've got proper exhaustion. Been in bed all day . Instant again. I've a strong will and beeb
Natalie walking about doing very gentle pysio. Am fed up though as mind quite bright but body very unwilling. I've got an injection due in January (2 months)
It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.
I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.
A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.
Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.
It may mean you need more B12 injections so make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even re- start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"
If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.
You say that as far as you know your "folate came back normal"
There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.
Symptoms of a folate deficiency can include:
symptoms related to anaemia
reduced sense of taste
diarrhoea
numbness and tingling in the feet and hands
muscle weakness
depression
Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.
Initially, replacing B12 will lead to a huge increase in the production of blood cells and platelets (which occurs in the bone marrow) and can lead to rapid depletion of folate and iron stores; this can then limit the expected recovery of Haemoglobin. Both iron and folate may be needed so please have these levels checked by your doctor.
I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 46 years.
There's a lot of info in my post. Might be worth getting some help reading through it.
I'd suggest getting copies of all your blood test results. In relation to B12, I look particularly at B12, folate and ferritin and full blood count (FBC).
I am not medically trained.
What does GP think is causing your B12 deficiency?
Do you eat plenty of B12 rich foods eg meat, fish, eggs, dairy, shellfish, foods fortified with B12? A vegan or vegetarian diet can be a risk factor for B12 deficiency.
If yes to plenty of B12 rich food then diet as a cause becomes less likely and the possibility of an absorption problem in gut eg PA/Coeliac disease etc increases.
Have you been tested for PA and Coeliac disease and other possible causes of B12 deficiency?
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies.
If finance is an issue , there's a good chance that your local library service will have at least one of these books.
Do you have any neuro symptoms?
UK recommended treatment pattern for B12 deficiency WITH neuro symptoms is....
A B12 loading jab every other day for as long as symptoms continue to get better ( could mean weeks even months of loading doses then a jab every 2 months.
Your GP appears to have put you on treatment pattern for those without neuro symptoms eg
6 B12 jabs over 2 weeks followed by a jab every 2 or 3 months
"As far as I know my folate came back normal, as did my blood count"
The reason I always get copies of all test results was that on more than one occasion I was told everything was "normal" and when I got copies I found abnormal and borderline results.
More B12 info in pinned posts on this forum.
Do you have someone supportive who can go with you to appointments? Even better if they have read up about B12.
Help for GP
1) There is a section on PAS website for health professionals. They can join PAS for free.
In UK, two first line tests are recommended but GPs sometimes forget to do second one, Total IgA.
1) tTG IgA
2) Total IgA
tTG IgA test checks for a particular type of antibody to gluten. Total IgA test checks for which patients have IgA deficiency. Patients who have IgA deficiency are unable to make the antibodies that the tTG IgA test checks for and so will test negative on tTG IgA test even if they have Coeliac disease. Patients with IgA deficiency need different tests for Coeliac disease.
Have you checked your records/test results to see if you have had both above tests for Coeliac disease? Some UK GP surgeries have online access to a summary of medical records/test results. Access details should be on your GP surgery website. Remember it is just a summary and may not have all the info required. May be worth asking for access to paper records if something is missing.
Above link only mentions online access to records but my understanding is that you can access paper records. May need a formal written request to surgery for this.
If you need to ask questions about Coeliac disease, Coeliac UK have a helpline number.
Coeliac UK Helpline 0333 332 2033
H Pylori infection
Have you ever been checked for H Pylori infection?
One of the potential signs of fish tapeworm infection is an increase in eosinophils, a type of white blood cell. Eosinophil result can be seen on Full Blood Count results.
There are other parasites that may lead to low B12 eg Giardia Lamblia.
Have you ever eaten raw or undercooked fish or travelled in an area where internal parasites are common?
As I said in above post, correct level of treatment is vital. There is a risk of further deterioration if inadequate treatment is given.
Neuro symptoms include tingling, pins and needles, tinnitus, tremors, memory problems, balance problems, brainfog, confusion , restless legs, periodic limb movements plus many others possible symptoms.
If you have any neuro symptoms, my understanding is that you should be on pattern of treatment for those with B12 deficiency WITH neuro symptoms, see BNF, NICE CKS and BSH links for info on UK B12 treatment.
Link about writing to GP if under treated for B12 deficiency with neuro symptoms
One thing your GP may not be aware of is that BNF (British National Formulary) guidance on treatment for B12 deficiency has changed recently. Guidance now says that people without neuro symptoms can have jabs every 2 or 3 months. GP may think it has to be every 3 months.
Got a blood test booked for friday testing Coeliac (not sure which test) and for magnesium too.
When I asked about pernicious anemia the GP was quick to say that it would have shown in my full blood count. I thought it was a separate test but maybe I'm wrong?
I've struggled with ADD like symptoms but not sure if thats neuro? I also occasionally feel like my tongue is a little numb as well as a slight tingling next to my nose on my face but those might just be a little random and they have been very infrequent
"a blood test booked for friday testing Coeliac (not sure which test) "
Make sure that you are having both tests tTG IgA and Total IgA and I suggest getting actual copies of the results. I learnt not to accept being told everything is fine unless I had actual proof.
If GP is reluctant to do both tests, you could point out that both tests are recommended in NICE guidelines on Coeliac disease (and have a copy with you with relevant bits circled - relevant section is 1.2.2 )
Might be worth talking to Coeliac UK about tests before blood is taken.
Coeliac UK Helpline 0333 332 2033
"When I asked about pernicious anemia the GP was quick to say that it would have shown in my full blood count"
1)GP was probably looking for signs of macrocytosis (enlarged red blood cells) in your FBC. Macrocytosis can be associated with PA/B12 deficiency and also with folate deficiency. Many people with PA do not have macrocytosis. Ask PAS about this if you're a PAS member.
2) This flowchart from BSH guidelines indicates how PA and Antibody Negative PA can be diagnosed in UK. Might be worth having a copy of this with you.
Flowchart from BSH Cobalamin and Folate Guidelines
Flowchart indicates that people with non-dietary B12 deficiency should have an Intrinsic Factor Antibody test and also makes it clear that it is possible to have PA even if IFA result is negative.
The Intrinsic Factor Antibody test is not part of the Full Blood Count. It is a separate test.
Have you asked GP directly if you have had an IFA test? And seen the results? If GP has not ordered an IFA test have they explained why not? IFA result may give a false positive if blood taken close to a B12 injection.
The only reason I can think of not to order an IFA test is if GP is convinced your B12 deficiency is due to diet.
Do you eat plenty of B12 rich food eg meat, fish, shellfish, dairy, eggs, foods fortified with B12?
If yes to diet rich in B12, might be worth writing down a typical weekly diet for GP so he can see you are eating plenty of B12 rich foods.
I also suggest reading the summary of mainly UK B12 documents in third pinned post on this forum.
"Jabs will be 12 weeks apart."
If you have any neuro symptoms then following pattern of treatment is recommended in UK...
A b12 loading jab every other day for as long as symptoms get better ( could mean weeks even months of every other day jabs) then a jab every 2 months. See BNF, NICE CKS and BSH links in my other post for more info on UK treatment.
Might be worth writing a list of any neuro symptoms you have for GP .
Neuro symptoms may include tingling, pins and needles, memory problems, tinnitus, tremors, restless legs, numbness, clumsiness, balance problems, migraine plus many others.
There is a risk of neurological damage if B12 deficiency is under treated so it's very important to have right level of treatment. I hope you have someone to go with you to appointments.
I'm fortunate that my mother also has a b12 deficiency. She was diagnosed when her level was 60 - her hair was literally falling out of her head. She was scared she had early onset dementia. As a result I'm lucky to have even known about it because otherwise I would have just deteriorated like she did.
I'm starting to gain some confidence to turn around and suggest things but im quick to get scared of backlash! I'll try and bring her in with me for back up for any appointments following.
I'm also having my b12 level checked again. My natural assumption is that this will just show up very high because of the loading doses but is there any instance where despite the injections I will still be low? I thought testing me for it again seemed silly and just an ignorant GP decision but maybe there's something I don't realise?
In UK, letters to GP are supposed to be filed with a patient's medical records and are therefore harder to ignore than things said in an appointment which might get forgottten or not recorded in notes.
"im quick to get scared of backlash! "
I think you are right to be concerned...I found that being assertive irritated some GPs. If you feel your GP may react unhelpfully then it makes sense to take someone with you to appts as a witness. You need to weigh up the risk of "backlash" with the risk of what might happen if you don't get correct level of treatment.
I gave up worrying about upsetting GPs etc when I realised I was heading for dementia type symptoms and possible spinal damage if I didn't get treatment..( I always tried to be polite even when snapped at by medics).
Family History
Does GP know your mother has B12 deficiency? If not , I suggest putting this in writing to GP as it may help GP. Does your mother have a PA diagnosis? If yes, does your GP know about PA in family? Probably worth mentioning any other blood relatives with PA /B12 deficiency to GP.
There is a risk that your blood levels will show as being well within range and GP thinks everything is okay and stops treatment. See letter writing link I mentioned if this happens. Also this blog post...
makes it clear that if a person is symptomatic for B12 deficiency (keep a list of all your symptoms) they should be treated even if B12 levels are well within range. BMJ is generally well respected by GPs so may be worth giving copy to GP.
Have a look at summary of documents in third pinned post on this forum. It mentions the issue of testing B12 after treatment has started. It's the last link in third pinned post.
PAS membership
Perhaps you or your mum could join PAS. If your GP is unhelpful, you may benefit from their support.
They can support people seeking PA diagnosis. PAS can sometimes intervene directly. At very least they can pass on useful info. You do not need a confirmed diagnosis of PA to join PAS. Basic membership costs £20 for a year.
Blog post about how PAS can support people seeking PA diagnosis.
Some people have found it helpful to keep a diary of how symptoms change over time and in response to B12 treatment. Some have found this diary is useful evidence when arguing for jabs more often as diary may show symptoms deteriorating with time after a B12 jab.
I have young adults in my family circle and have drilled them with what to look out for to recognise B12 deficiency...they think I'm nagging...I can't bear the thought of them or any other person going through what I went through. It took me many years to get the problems recognised.
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