My life is spiralling down and down and out of my control.
My GP and now neurologist have washed there hands of me an I think they think I am crazy. I have shown them the new guidelines from last year and neither are prepared to follow them. The neurologist last week (unbeknownst to me when I was getting other blood tests) retook my b12 and was "unmeasurable" ie off the chart (I had 9 loading doses of hydroxocobalamin so no wonder, hence why I didn't authorise it). I am now "cured" and it has been in my head. They refuse to diagnose on original bloods (in grey zone but dropped by 180 in 2 weeks) or despite a massive improvement in my symptoms and treating on clinical symptoms. I am living in hell.
I tested my kids privately, my 15 year old is in the "grey zone" 382 (250-725 range) ferritin 22.7 (20-200) way too low if you ask me.
My 7 year old is even more worrying, she is showing signs of neurological issues. Pains/weakness in legs, numbness, fatigue (all unprompted). Long term issues with chronic constipation but never has a firmed stool as on laxatives. Ferritin 17.5 B12 234 - Drs notes said this was not severely deficient by "insufficient" and should be investigated further. Her folate is also elevated at 43.13 (10.4-42.4) guidelines state that "true cobalamin deficiency can show a normal or elevated folate".
We don't eat dairy as I don't like it and we have hardly any B12 rich foods. My ex is a nightmare as he is a doctor and I haven't said what's wrong and he says I need to get a diagnosis.
I have been in touch with PAS and b12d.org who have been amazing. I have some methylcobalamin with I started today.
Does anyone have a similar story? I AM DESPERATE to get a diagnosis. I am prepared to see someone privately but it seems that haematologists also seem to ignore the guidelines.
I am prepared to travel anywhere in the UK - I am in Glasgow.
Get this - my dry here are REFUSING to follow the guidelines as they are for THE UK and I am in Scotland. err... Isn't Scotland still in the UK? What the .... (Fill in the blanks) Apologies for the offensive language...
I cannot trust Drs any more and have zero respect for my GP now. I am a practice nurse and my boss thinks it's in my head. I am at risk of loosing my job. How can I treat patients when I am so unwell? I need to well to support my kids, I have a mortgage to pay. I want to live again. The psychological toll is unbearable. What kind of world is this? This is 2015 for God's sake! I am so worried about my girls.
I am seriously worried about my mental health.
Please, please help.
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Babygodmother
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Believe me, you are not alone. I'm in the same position as you, as are many others in this forum. We end up treating ourselves because our doctors won't listen. I am in NZ and it's exactly the same here. Have you heard of Dr. Sarah Myhill? She is in the UK and although initially working for the NHS, now work privately. I am fairly certain she would be able to help you. There are many links in Google about her. here is just one of them. i hope this helps.
Thanks LadyNZ it is hell going through this. The doc from the B12 charity here talked at length to me on Friday night and he said that they must not crack your spirit.
He said that I must forget about these doctors as, no matter what you say to some people an so-called experts, they will never listen. Despite the fact that I am an experienced nurse and know what I am talking about.
He is very concerned re my 7 yr old and I am hoping she can fare better than me. Her peadiatrician did listen and is organising some tests on the NHS. I really want a diagnosis so that they will take her health seriously and treat her.
I don't know what is wrong with this world. My only objective is to get better ans see my children happy & healthy and put this behind me.
I'm sorry to hear that things are so difficult for you.
"They refuse to diagnose on original bloods"
I can certainly relate to this. I had B12 deficiency a few years ago and the results were under 150. Since then my results have been in normal range and are now in the 2000s as I felt forced to treat myself. IFA tests negative.
"we have hardly any B12 rich foods"
I read that fish and shellfish are rich sources of B12. Liver is a rich source as well plus eggs.
Is your diet rich in folate and iron containing foods? People need good levels of folate and iron to maximise uptake of B12.
I gave up most dairy due to IBS symptoms but I use a rice milk brand that has added B12. I have noticed that there are quite a few vegetarian and vegan products that are fortified with B12 as it's a vitamin those groups can find difficult to obtain. Some health food shops can give useful advice on vitamin content of products.
My bloods were all in "grey zone" and now I am "cured". I realise now I have had this for years. After the loading doses stopped my neuro symptoms started to come back. I told this to my GP but he trusts the neurologists decision (who is a professor, can you believe that?). Of course my B12 will now be "unmeasurable"! The joke of it is that no other patient gets retested after loading doses so why do they need to retest us? They would all have the same results!
He told me I need some support for my "mental health problem" and I said I would not have a problem if you just treated me and believed me.
If it were just me I would tell them all where to go but my children's health is at stake here. I am looking into other avenues for diagnosis, otherwise my ex will not believe me and will be putting his 7 yr old daughter at extreme risk.
I have all your links but will focus on getting better just now. Then I will be getting in touch will my MP (actually, it's MSP here as health is devolved, he's a bit crap! I think I'll wait til after the Scottish elections).
I've think it profoundly ironic that doctors accuse patients of having "mental health issues" when it comes to B12 deficiency, when mental health problems are one of the red flag symptoms of the illness.
As someone who is currently going through the EXACT SAME THING, my advice is this:
1. Take responsibility for your own health. These [insert expletive of choice here] are not going to do this for you. It's more important to be healthy than it is to be right. Change your diet, take supplements, do whatever you can to help yourself.
2. Get a private second opinion if you can. The PAS may have names of doctors they can recommend. Do your homework. I asked for an appointment with a private GP who understands B12 deficiency and it made all the difference. I'm in the process of getting help. If you want to PM me, I'll send you his name.
3. Complain! That's why the process is in place. You have zero respect for your GP, so you have nothing to lose. Report him. Write to your MP. Make some noise.
4. Have your thyroid checked. People with PA often have thyroid issues or other autoimmune issues as well.
5. Hang in there. Know that you are not alone. You are not crazy. Other people might not know what you are going through - but there are many of us who do.
Hi that is so helpful if you were beside me I would be hugging you!
I just don't know what the hell is wrong with this world! The B12 charities have been awesome and spoke to me on the phone at length. They have said exactly what you have.
I am new to here and not sure how to PM. I am doing it now, so can you let me know if it doesn't come through?
So thankful for you all. I would likely be dying if it were not for this information on here. Feeling way more positive.
My doctors knew for yesrs that I had PA but no one ever said anything about B12. I had all the symptoms. Neuropathy, depression, anxiety etc. It's been going on for over 15 years. It was until I quit making blood that anyone noticed.
Thanks for your reply. It seems that this is the Cinderella of all diseases and no one cares a jot about the misery it can inflict. The irony is it is so cheap and easy to treat.
There are so many horror stories about GPs not listening, not understanding and being downright obnoxious, but I need to say there are good GPs about- I now realize just how lucky I am to be registered with a GP practice where all the partners have the same ethos of listening.
I just wanted to say there are some good GPs out there, don't give up hope!!!!
Thanks Callo56 my neighbour's friend is a GP but I can't register with her as I don't live in her area. I talked her through everything and she believes me!
I am feeling much better as I've restarted injections which I got via the charity. I am already noticing a difference. I just need to focus on getting well.
I am very disturbed that Drs know zero about this. I went to my GP with increasing palpitations, migraine (had these a long time as well as chronic IBS and gastritis) then burning feet & pins and needles. Also confusion, memory issues, blurred vision, balance problems, drop foot. I told him I was getting better from hydroxocobalamin injections. Now he says I have a mental health problem! My poor mother has been at all my appointments. She is 75 and does not need these.
I have a very rare hip condition that was fobbed off for years and "was all in my head" - my hip socket was repositioned 2 years ago and I had an awful time afterwards. I was told there was "nothing wrong with my hip" despite being in constant agony.
Seriously, I would be on my way out if I hadn't come to you all. Or languishing on some hospital ward with a bunch do inept doctors scratching their heads.
I am hoping to see a couple of doctors privately so I can move forward. For my 7 yr old sake I need a diagnosis.
If you had surgery that involved nitrous oxide at any time in the last few years that could have inactivated the B12 in your body. Nitrous oxide is present in "gas and air" given to women in labour. Do you know if you had "gas and air" during your labours? Some people have suffered spinal cord degeneration after exposure to nitrous oxide.
Sally Pacholok's book "Could It Be B12" mentions the dangers of nitrous oxide as do Martyn Hooper's books
"I am looking into other avenues for diagnosis"
Sometimes other health professionals can spot signs of B12 deficiency eg an optometrist or opthalmologist might spot signs in the optic nerve during an eye test at the optician's, a dentist might spot a swollen, sore tongue or ulcers in the mouth.
Hi I don't know if I had nitrous oxide during my surgery. I had it a bit during my first labour but it made me feel sick so didn't want it. I had terrible post natal depression after labour no 1 and it is likely it triggered by my B12 - I am convinced I have had this for years.
I am working my way through Sally Pacholock's book - I have quoted this to my GP and said I have been getting wonderful support from the B12 charities. He is not one bit interested.
I have a couple of private options that seem to be hopeful.
The horror of this is that these doctors are being negligent - I handed this diagnosis to them all on a plate, even if they were not sure then they should've tried to do this and see what happened. My GP's answer "we don't know if high quantities of B12 are harmless". I said that he has a duty of care and the hypocratic oath is about doing no harm - by not treating this, he is doing me harm.
My recent eye check was fine. I explained to my optician the issues and he was great. He could see how ill I was.
I teach birthing classes (privately, which I have to give up just now which is heartbreaking). When I am back to health, I will make sure all my ladies are aware of the dangers of low B12 & using gas and air. I had no idea.
My gp wanted to stop me having my injections anymore as my level was above 2000
I found a private endocrologist and she was brilliant. Because I suffer with a lot of neurological symptoms after about 2 months, she has told my gp I need them every two months and they are not to check my level as it's irrelevant.
It's taken me three years of useless gps who are clueless.
Don't give up! Try to find a specialist who knows about low b12 and they will hopefully help you. Don't listen to some gps, they haven't got a clue! I was told I was "inappropriate" wanting an injection even though I was white as a ghost, numb hands and feet and exhausted! Useless.
Thanks for that. Where is your endocrinologist? Does he/she know about B12 deficiency? I am willing to travel/pay to see sympathetic doctors. Honestly, the service in Glasgow is horrendous! The two times I have been sick (major hip surgery and this) I have been treated like dog dirt on a shoe.
I am a health professional and am disgusted at the way I have been misdiagnosed & as if I have a mental health problem. I am a practice nurse with 20 years experience and treat patients with this disease every day. I need proof that I have PA as I want to show my boss, who doesn't believe me either! My seven year old has it too.
My patients need their B12 more often than they do. I have a little old lady who keeps getting terrible anaemia (she has to get blood transfusions) and she has an awful tremor. She gets an injection once every 3 months and the last time I saw her she asked "why can't I have it more often? My friend in Spain gets hers every week!"
Patients with neuro symptoms are supposed to get b12 every 2 days until there is no further improvement in their neurological symptoms, then 2 monthly after that. These are in the new guidelines and it says it in the BNF (drug formulae book doctors follow).
B12 levels are completely irrelevant. It doesn't reflect response to treatment. It says that in the guidelines also.
"these doctors are being negligent - I handed this diagnosis to them all on a plate"
I can totally relate to your comment...I sent articles,e-mails, letters etc nothing worked.
"disgusted at the way I have been misdiagnosed & as if I have a mental health problem"
I ended up with depression because of the way I was treated.
"I am working my way through Sally Pacholock's book"
Martyn Hooper's books are also good. I cried when I read "Living with Pernicious Anaemia" as I could recognise myself in the descriptions. He has a third book coming out later this year in Oct "What you need to know about Pernicious Anaemia and B12 Deficiency"
"I will make sure all my ladies are aware of the dangers of low B12 & using gas and air."
That's great you'll mention it. No-one ever told me about the dangers of nitrous oxide. I suspect that nitrous oxide during labour was a trigger for the start of major problems. I had post natal depression and wonder if gas and air had something to do with it.
I was shocked to look at NHS Choices a few months ago and find in the link below that they state there are no harmful effects for mother and baby. I wanted to shout what about the mothers with low B12? I also wondered if gas and air could affect a baby during labour if the baby has low B12.
The above link says that neurological effects of nitrous oxide can occur in people with normal serum levels of B12. That's really scary....it's not just those with low levels of B12.
I am getting good & bad days and the worst thing is leg weakness and no appetite. I hope this is not permanent, I used to walk everywhere and cycle. I am loosing weight - I'm not that big to start with.
I have had a breakthrough this morning. I have had a letter from a haematologist (my GP forwarded my letter re false normal bloods and that IF neg doesn't exclude PA, plus all the stuff I mentioned about guidelines). He basically agreed with this and says that I should continue long term on B12 injections and then 3 monthly once my neurological symptoms stabilise! OMG! I just cried when I read it...
I am getting support from lots of avenues and from my little girl's doctor/school nurse/after school care.
I am still going to see a private GP who is "on the ball" according to another member. I am travelling 400 miles to see him but it will be worth it. If you want his name, PM me....
I will be changing my GP...
Your support, and everyone on here, is amazing. I will say this again.... I am in no doubt I would be dying in hospital if it wasn't that I stumbled upon this forum, as I have severe PA and not a single doc would realise what the hell was going on.
I am hoping to be well enough to go to the PA annual meeting on 31st Oct. Anyone else going?
"He basically agreed with this and says that I should continue long term on B12 injections and then 3 monthly once my neurological symptoms stabilise!"
Just to note that the BNF (British National Formulary) says patients with B12 deficiency and neuro symptoms should receive maintenance injections every two months (not every three months) after their loading doses have finished.
Good luck with the private GP. I'd be very grateful if you could let me know how you get on by sending me a pm. I need someone who will look really closely at symptoms rather than blood test results as my B12 levels are very high.
I'd like to go to the meeting.
The great thing about having a diagnosis yourself is that it should make it much easier to help any relatives who have similar problems. I have relatives I worry about but in my case I have found it impossible to get a diagnosis for myself.
Will let you know how I get on at private GP - just want a back up. Really want this firm diagnosis so my 7 year does not suffer. Having more scans etc over next few weeks then can move forward.
The haematologist said doing more bloods was irrelevant as I am now supplementing.
Apologies if this came through twice, not sure if posted last time.
Xx
You may be vegetarians, but if not Pigs liver (best for B12), make a pate if you don't like it with onions, it also stroganoff's, and marmite try on toast, best wishes
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