Update: The Gastroenterology Doctor telephoned and with my help, my daughter's memory is bad, we outlined the last 4 years. He will organise a small bowel mri, an endoscopy and PA antibody test (although these are not necessarily reliable) it is a relief she is being taken seriously. Previously she took too much folate and was told to stop, is it possible that taking B12 supplements, she needs to introduce folate again?
I am fortunate enough to be able to self inject at home each month. My 28 daughter has spent 5-years fighting her GP had neurological appointments brain scans etc and still no diagnosis. Tomorrow she has a gastroenterology appointment on the telephone. I'm at a loss now how to move things forward and what to say, she wants me to sit in on the phone call with her.
She is now suffering hair loss on top of peripheral neuropathy, optical neuritis and no help from GP. He said her bloods were normal (300) she takes supplements but not helping.
I have written a letter to her GP, she won't send yet.
What will the gastro be looking for?
I just want her to have a trial of therapeutic B12 to see if it helps.
The gastroenterologist can do very little over the telephone.
Ask him/her if it would be worth doing a gastroscopy to look for signs of gastric atrophy. Or a test for H pylori infection. Or a test for gastrin levels*.
Does your daughter have any gastrointestinal symptoms that are common with gastritis? Heartburn? Diarrhoea? Bloating?
A course of B12 injections is the gold standard for a B12 deficiency. It's harmless and should tell you in a couple of weeks if B12 is the problem.
*If you have Pernicious Anaemia then your immune system attacks certain cells in the stomach. These make a protein called Intrinsic Factor (needed to absorb B12) and stomach acid. When these cells are destroyed you can't absorb B12 (no IF) and you don't make stomach acid.
When you eat something your body makes the hormone gastrin. This does various things - including switching on production of stomach acid. The acid lowers the pH of the stomach - which switches off gastrin production.
With PA there is no acid producing cells, so no acid, so pH is not lowered, so gastrin production is not switched off.
Thanks for your reply. No, she doesn't have gastric issues, I do. My PA test came back negative but I am still treated for B12 deficiency. Sadly her GP refuses the PA test, although it's only probably 50% accurate. I really don't feel it necessary for such invasive procedures when having b12 injections may just be the answer. My next suggestion was a private GP appointment and then paying a 'beautician' for her first injection. Just wish I could do it for her. It's changed my life!
Do consider self-injecting B12 . No harm done even if it’s not the answer . so cheap , easy and convenient . You cannot overdose vitamin B12 . Cost ? About £1.60 all inclusive .
I inject my own B12, but am not qualified to inject her. I think her first injection should be in a clinical setting. She was told stop folate tablets as her levels were too high. She's been told she is depressed and is definitely not. It is definitely neurological as first thought it was MS.
This auto-injector is supposed to be very helpful for anyone who is needle -phobic. Obtainable at —UnionMedico.com A Danish company This device is for I,M. injections and sub-cutaneous . .
I agree that her first injection should be in a clinical setting - just in case she has a bad reaction. If that goes well then you could inject her if she will not do it herself.
One of mg daughters having a long struggle too .Her hairless waz due to low ferritin. Low fokare very low b12 with megobalastic anaemia was eventually found wgen j blocked her discharge from hospital until more investigations were done after years of Brain scans lumber puncture tested for Addisons. Endoscopy was clear despite bad digestive issues
Self help. Fodmap and swimming . Pilates
Rheumatologist discharged her after ruling out lupus ect
Heart monitors 24 hr urine tests by 24 hour cuff on.
Then give label of fibromyalgia and chronic fatigue . Symptims night a diagnosis.
A pain clinic helped with the joint pain.
Fjnally diagnosed af The National Hospital London. I asked for her ti be referred to begged actually when I finally went in with her to a consultation.
Initially she was told no.
Some consultants made wrong assumptions about lifestyle and weight gain.
Has your daughter had thorough thyroid tests?
Hypomobility and POTs
Eglers Danlos are the awful diagnosis but a label to work with and proved not in ger head as sent tol many times down the mental health route . I I fact think yoh have to be very string mentally tk cope !!
Worth riuling out an autonomic disorder
I think get b12 deficiency started years ago but was never tested.
Ag least your daughter has a level.
Has she tried oral b12 folic acid viti d ect
Get every referral possible.
Its ruling things out.
Meanwhile push for b12 injections if oral ard not absorbed. Ask for a trial??
If theh cant find anything else?
Just keep going
It was a hospital general doctor that helped my daughter in a and e.
Thank you. MS has been ruled out now due to brain and spine scans. Thank goodness. Not sure about thyroid. But as I have a family history of B12 deficiency I don't understand why GP is refusing to.inject. he thinks she is absorbing tablets, maybe so, but it's not converted into anything useful for her.
If the B12 from tablets is getting into the blood then it's exactly the same as if it were injected. Perhaps lower dose tablets three times a day might work better than high dose once a day.
Hi, my understanding is that it is entirely possible to have normal B12 blood results when taking supplements. The Vitamin B12 levels in your blood do not necessarily correlate with the levels needed to maintain normal function of the nerves, so even if the blood levels are high that is NOT an indication to rule out PA or B12 deficiency... according to my neurologist at the hospital.
Yes. It is possible to have high blood levels and still show signs of a deficiency. That's why so many of us need very frequent injections.
But whether those high levels of B12 get into the blood by oral absorption, or by injection is irrelevant. However, high levels from oral B12 does rule out PA. Because with PA you cannot absorb oral B12.
gosh this is confusing, her levels were 300 after a year of supplements, does this mean she can absorb? So maybe not PA, but still have functional B12 deficiency. 5 years of going round in circles and no answers is so upsetting.
The image has been cropped, so cannot read it all. However, I can read your daughter's name. So you might want to edit the image to blur that out.
It looks as if the gastro has asked for an MRI of the small intestine and a gastroscopy. The latter will look for problems with the stomach (gastritis) and also the duodenum (coeliacs). The MRI will be concentrating on the lower end of the small intestine - the jejunum and ileum looking for anything that might cause absorption problems,
Update . My daughter had blood tests taken yesterday which included:Ig profile (Igm, Iga, IgG) intrinsic factor antibodies, Liver autoantibody screen, coeliac screen.
FBC
Ferritin, B12 and Folate
Liver function Test (profile)
Magnesium,
bone profile
It was also noted that one of her fingers was warm to touch and loss of feeling. She has had peripheral neuropathy in hands and feet for 5 years , but this was a new finding.
We now await small bowel mri with contrast and endoscopy to take biopsies.
Well, it looks to me like you did very well on the phone consult, which is not an easy task. 👍
I too have a daughter of a similar age with health issues, and understand your involvement and worries.
I hope that you don't have to wait long for all the tests. The blood tests at least should be pretty quick, Hang in there, it appears that you are finally getting somewhere.
Sending you best wishes.
Hi Teresa.sorry this is continuing like this for you both.I’ve just had private bloods done by medichecks which has confirmed what I suspected all along,Lupus.I now have to have further blood testing to see exactly which type of lupus or other A.I diseases I have as my titre number was just in range for lupus,it seems this ANA testing just acts as a pointer,I do have confirmed P.A which I inject every other day for.
I have done the rounds of consultants as I’ve been so unwell with so many symptoms and yes my shots of b12 did help a lot but I’m still having many other issues.
I have a private neurologist appointment on Monday so fingers crossed he’ll either do tests or refer me to rheumy for further testing on nhs if not then it’ll be a private rheumy I’m not messing about waiting ,gps useless.
At least I have another direction to focus on now so might be good for you to ask gp to check daughter for lupus.best of luck
• in reply to
thanks for replying, sorry to hear your have Lupus, I only know a little about that disease as a distant cousin happens to have both lupus varieties! What are your symptoms of lupus, aside from the B12 symptoms?
• in reply to
Feeling drained of energy a lot of the time weird rashes,pain in various joints at various times,head pain from back of ear right across top of head,my lungs get attacks of terrible burning pain from bottom right up both lungs to shoulders,very hard to deal with when it happens,today I have severe hip pain on rhs.horrible kidney pain ,I have stones it seems to just go in and on with so many symptoms.I thought that increasing my b12 shots to every other day ,it’s been a year now would help and it has to an extent, but I knew I still wasn’t progressing the way I’d hoped so I researched again as we all do and thought I either had Sjögren’s or lupus so arranged private bloods which positive pointed to lupus,it’ll be another long round of testing again now but at least I’m progressing again.it’s the constant frustration of knowing your not you and the random pains you get on a daily basis that no one wants to hear any more,I wish you both well it’s no fun for either of you xx
• in reply to
I am so sorry to hear this, and wishing you all the support you need x
• in reply to
Thank you Teresa and fingers crossed for you both,your a great mum to fight her corner like this x
I know from my own personal experience how difficult and demoralising it is when your gp doesn't seem to want to take your issues seriously.
You just feel like you are continually hitting your head against a brick wall and it doesn't make any difference which direction you go in.
Your daughter must be completely worn out after five years of this! I can imagine it must be very upsetting for you to not be able to help your daughter get the treatment she obviously needs to regain her health.
Obviously as suggested by fbirder a trial of B12 injections would clarify if B12 deficiency is your daughters' problem.
It would also be very useful to get thyroid tests done too as the symptoms often overlap with a B12 deficiency or PA.
If you go on the ThyroidUK part of healthunlocked you can read the posts and it'll tell you when to test (as time of day is very important) and which tests are the necessary ones for your daughter to get as this is another health condition that is 'misunderstood' by GPs!
Also the NHS don't do the full range of necessary thyroid tests so it would probably be best to go along the private route; again lots of information regarding this and discount codes on ThyroidUK.
Also when you send the letter make sure you also send a copy to the practice manager! I've found this really helpful and have got a better outcome from doing this.
You can find out the name of your practice manager by looking on your surgery's website if you don't already know their name. Also if possible take the letter into the surgery if you're able to so they can't say they didn't receive it. ☺
I've also been told it's mental health problems causing my issues so yes I'm still hitting my head against a brick wall, but I won't give up!
Thank you for taking the time to response. I am so disappointed to hear the same story over and over again in regards to B12. When will our GP's learn? I spent 10 years working for the NHS, many as a complaints officer, I have seen good and bad sides. I now work in medico legal assisting solicitors with court cases for medical negligence, hence why I am so passionate and of course it is my daughter. Good luck in your fight too.
Update: The Gastroenterology Doctor telephoned and with my help, my daughter's memory is bad, we outlined the last 4 years. He will organise a small bowel mri, an endoscopy and PA antibody test (although these are not necessarily reliable) it is a relief she is being taken seriously. Previously she took too much folate and was told to stop, is it possible that taking B12 supplements, she needs to introduce folate again?
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