Visit to hematologist for pernicious ... - Pernicious Anaemi...

Pernicious Anaemia Society

23,985 members16,854 posts

Visit to hematologist for pernicious anemia

Greena51
Greena51

Hello folks,

It has been ten months since my PA diagnosis (positive IFA test). After loading doses and tracking symptoms I have increased my injection frequency from once every 14 days to 10 days to 7 days to 5 days. Last month, I switched primary care physicians. My new doctor immediately knew of PA and was happy to prescribe injection vials for me to self administer every 5 days. Still, he was concerned at the frequency of the shots and referred me to a hematologist.

Today I met with the hematologist and was told that because my injections exceed the recommended treatment for PA (which he quoted as weekly injections for one month, then monthly injections), my anemia is cured. He said that my B12 levels are his only concern and that I should be careful to avoid toxic levels (which he admitted were thousands of times higher than any measured B12 level I have had). He also mentioned that any neurological damage is repaired. I asked him how he knew that, and he said something to the effect of "it's not like your whole nervous system is damaged". I asked if there were other tests we might run and got a firm "no". The bottom line is that

I don't doubt that there are knowledgeable hematologists out there, but PA was clearly not this doctor's strength. I only wish he were better informed or willing to refer me to someone else rather than saying untrue things. Thank goodness for my primary care doctor who freely admits that the PA patients he sees have a range of needs in terms of B12 shot frequency.

I have posted a few times on this forum and I'm always glad to read of other's experiences, especially with doctors. I hope my story is a reminder that you must keep searching for physicians who understand PA.

23 Replies
oldestnewest

What a shame . Like you I've eventually got Gp to try and understand

She let's me at present have b12 injections on when I think needed. I'm still unsure of that! I'm presently on a week or 2 weekly. I alsi had a neurologist who said I was psychologicaly addicted to

i them and I would be ill having too many! ! My Gp clearly has little understanding but at least an open mind. She says she is learning from me.

Greena51
Greena51 in reply to Nackapan

I'm glad your GP listens and gives you the injections you need. It is disheartening when someone suggests it's in your head. Thanks for the reply.

Nackapan
Nackapan in reply to Greena51

That's is how the doctors started with me. I've been offered /prescribed antidepressants as seemingly first line of treatment . Countless oyhet drugs.I was refused a refferal to an ear and nose specialist by one doctor as I didn't take his ptrscribed drug when I had vertigo. I got it just incase but didn't need it. Unbelievable. True though

I just kept persevering. They might have agreed on B12 injections to shut me up?

?? The Gp I've chosen to stick with still asks how often I'm having them and referring to a B12 blood test picked up by lab computer to do as not on blood form just after one so level+1500. I have to be like a needle stuck and simply say but yes that was done on error and dosent mean anything. Keep going to get a doctor to believe you and treat you and work with you.

Keep your pecker up

I have had injections every three months for several years My levels are always massive when tested but my GP says that's fine!

Greena51
Greena51 in reply to rosyG

Yes, the levels are of course high once you start injecting. I think this hematologist recognized that I was nowhere near a toxic level, but I found it odd that was his only concern. Thanks for the reply,

Nackapan
Nackapan in reply to rosyG

I wonder why they bother then!

I would write tothe idiot haematologist and ask for a reference to the papers that describe the toxicity of B12

Greena51
Greena51 in reply to fbirder

To be fair, he did point out that I was still many thousands of times below a toxic level. Where he came up with this toxicity level is something that he should be asked, but I don't intend to return to this doctor anytime in the future! Thanks for your response, it made me smile and feel comforted!

Oh my......whats the nonsense about toxicity with b12-clearly hes not very well informed at all. Poor you! Glad your GP is very supportive.

Greena51
Greena51 in reply to waveylines

Thanks - I am lucky in my new GP. Glad I found him and will let him know this referral did not pan out.

I was diagnosed with PA 9 years ago now still on injections 12 weekly

Learnt to cope with the fatigue and all that comes with it I suffered with quite a lot of numbness which has never got any better but not any worse my Specialist is very sympathetic and very understanding I was told years ago that increasing injections would have no beneficial affects and I personally am happy with my treatment x

Hope you find the answers you are looking for x

Greena51
Greena51 in reply to lilly60

I feel like all I've been doing the last 10 years is learning to cope with the fatigue and symptoms. Now that I am injecting more frequently, I am able to return to more activities I love and even feel like my old, happy self. I wish you the best.

If you are positive to an I.F.A. test , you have Pernicious Anaemia. If you have P.A. it cannot be cured and you must be on life-time injections of B12 , according to your need . That an haematologist could say that your PA is cured , defies belief ! That is more than shocking . P.A.is incurable ! But you can lead a normal life if you get the correct treatment . Of course getting the right treatment can be difficult ( to put it mildly !) By trial and error I found the right treatment - which I self administer - a weekly B12 injection . We all have different requirements . But we need enough B12 to keep symptoms at bay . For some , this is once in 3 months , for others once a day ! And any figure in between. . Always remember that you need a good supply of vitamin B9 -called folate in vegetables, and folic acid in tablet form . This vitamin acts together with B12 .

Of course , if you suffer symptoms for a long time without getting the right treatment , you can be left with irreversible symptoms .

Greena51
Greena51 in reply to wedgewood

I agree - the last thing I expected to hear was that from an anemia standpoint, I am cured. What he also said was that my hemoglobin and B12 results confirm that. I've never had an abnormal hemoglobin test and my B12 was never below 200 pg/mL so what he said makes no sense on any number of levels. I just think he must have no other patients with PA.

I've been diligent about taking folate in a multivitamin for the last few months. Thanks for your replay and best wishes to you.

Cherylclaire
CherylclaireForum Support

Like you, I have heard some appalling statements from haematologists: that B12 is toxic, carcinogenic, highly addictive - all at the same major hospital ! I did ask several times for research evidence ...… which of course does not exist.

Luckily, I too have a well-informed GP.

I was sent there because we were unable to find a frequency that could improve symptoms long-term. She was concerned at that, and said that it had gone beyond primary care level which is why I was sent to haematology initially. She had already diagnosed, and had confirmed by a laboratory (at the same hospital !), functional B12 deficiency due to raised MMA when B12 levels over 2000ng/L, and had ruled out any renal problems. She'd done a good job but was uneasy about the amount of B12 I seemed to need and wanted support on that.

This was 2 years ago.

If these haematologists really believe the tripe they are presenting as fact, they must have research evidence that contradicts any previous papers, and should be absolutely desperate to present that to an ignorant public.

If not, and they are attempting to fob us off with lies, they are not only insulting our intelligence and deliberately misinforming us about B12, they are reporting back to our GPs - in my case telling her that she should certainly not be giving me more that one injection every 8 weeks "as per guidelines". Despite the dire warnings, and the high level of active B12 in serum (not altogether surprising), they were not sufficiently confident to stop the injections altogether:

why is that then, if it is so toxic/carcinogenic/highly addictive ?

Give me strength !

At this point, I started self-injecting every other day and finally am getting gradual improvements. It felt like giving up at the time, and something I was forced into. It felt way more dangerous to self-inject with no medical guidance that it did to up the frequency to a level that stopped me from deteriorating more. Now I'm glad that I am no longer reliant on others for my well-being.

I don't have to worry about whether I am meeting a consultant who knows nothing at all about B12 but who can influence my lifelong treatment. Or worse: stop it altogether.

At least, as someone with a PA diagnosis, you should be in the enviable (?) position of guaranteed injections for life as it is incurable. Luckily you have a supportive GP who is far more educated about B12 that your haematologist.

Imagine how many people are waiting for months just to be told rubbish like this, day in and day out. Wonder how many of them believe it ?

I"m so glad to hear you took matters into your own hands and self inject. Even more unbelievable than his statement about "your anemia is cured" is that my neurological symptoms are cured. How could he know that? He didn't ask me a single question about my neurological symptoms or how long I have been experiencing PA symptoms in general. Unfortunately, I am in the US and so must have a prescription for the B12 vials, though I do self-inject.

Thanks for your reply. It helps to hear other stories. I wish you a speedy improvements!

Cherylclaire
CherylclaireForum Support in reply to Greena51

He couldn't know that. Even neurologists need to test and investigate.

Don't let the experts grind you down, Greena51 !

Good for you. As I said before the NHS neurologist I saw told me I was psychologicaly addicted ti b12 injections. I would damage my health with toxic levels my symptoms from b12 deficiency have been dealt with . I could have injections 3 monthly possibly. I'm suffering from unconscious anxiety. Have post concussion syndrome and variant migrains.

As you say. Interestingly theses comments were not on the letter to Gp. (Thank goodness.)but I wonder why. He also didnt put in the letter to stop poisoning me with b12 injections .

I will never forget that consultation it's the closest I've got to needing antidepressants. Not being believed (the worst feeling)and being told nonsense by a medical consultant you have waited 4 months to see Addles with an already not so clear thinking brain! I had the worst ever migrain that night . The emotional stress and highly lit hospital environment all too much.

Reading the above posts brought all that back.

Cherylclaire
CherylclaireForum Support in reply to Nackapan

Sorry for that reminder, Nackapan - hope I haven't brought on a migraine !

Just shows actually I've moved forward with b12 injections.

Also not on antidepressants to date

Still trying to stay open minded though to anything thar might help

Hallo, please dont believe this H. I was diagnosed with level of 50 B12 three years ago with peripheral neuropathy. After some months and shots my level went to more than 2000. H. say no more shots! It was good that i continue making shots and my improvement is real now. Still now i had more than 350 shots. In 2016-17 i could not walk alone, now i am playing tennis on court. Dont stop. Wish you well !

Greena51
Greena51 in reply to zorrotenov

Wonderful! I'm so heartened to hear of your improvement. Thanks for your reply.

CarlaEP
CarlaEP in reply to zorrotenov

Thanks for your post Zorrotenov your life changing results are keeping me positive

You may also like...