Pernicious Anaemia

This may be of no use at all, but DH has iron deficiency anaemia and is unable to assimilate dietary or supplementary iron. He has a weekly blood test at our local hospital and if his Haemoglobin is 80 or less he has a blood transfusion the next day at the Planned Care Unit. He also has monthly Ferinject infusions and a monthly ferritin check.
Would your dr or the hospital at least agree to more regular blood tests? Maybe a Haematology referral to re examine your needs?
I know that DH cannot walk the length of his own shadow when he is low and his ability to think clearly seems to disappear into "brain fog"
Wishing you well

Thank you MawBroon, different kind of anaemia. I so know how your husband feels though with regard to "brain fog" and tiredness. Don't know why the docs is sticking to the maintenance dose and no one at the surgery wants to talk about it. Oh well if it takes me becoming unwell then so be it, someone might then do something. Keep smiling.

I have pernicious anaemia and I have been having injections every 12 weeks for the last couple of years. I have been told by the nurse to keep a diary to see if I should reduce the gap between injections to 10 weeks. I certainly get more tired in the last few weeks before the injection. Maybe you could try the diary idea and show them the evidence and negotiate going to 10 weeks then 8 weeks. You do have my sympathy it is very draining. I well remember my father had to have 4 weekly injections most of his life, he had been very ill with it when I was a young child.

Yes Lyndylou I think that idea of the diary is a good one and I will give it a go. I was told by one nurse at the surgery that I was NOT ALLOWED the injection every 8 weeks as this was some sort of guideline by the NICE. Errr I don't think so! The thing that gets me is that some celebrities have B12 injections and don't have pernicious anaemia, so ok they pay for it, but surely their levels of B12 in their liver is a lot higher than mine or yours. I have offered to pay, but nothing doing. For the time being I have to go along with this as what else can I do. I have said that I am tired all of the time and maybe for a day or so, once I have had the injection I feel quite well, but for the rest of the 80 odd days I just don't want to get out of my bed.
Thank you for your advice.

Hi Grandelly, I have PA diagnosed about 14 years ago and I've only ever been given my B12 injection every 12 weeks. It may vary in different parts of the country but 12 weeks is standard. I also get very tired plus many other symptoms and have asked for my jabs more often without success. Recently I have joined a Pernicious Anaemia B12 Support Group on Facebook run by Pat Kornic. (Sorry I am not very techy or I would post a link). It has many members and we chat about our problems, I find it very helpful. When I first joined this group I was surprised at the amount of people who self inject Hydroxocobalamin which they buy online, this is perfectly legal by the way. I haven't resorted to this myself but I'm not saying I never will. We are fighting to get PA/B12d recognised as needing more regular injections and there is a petition you can sign if you haven't already. Also the main group has a sub-group called Communal Chat on which we talk about all sorts of other topics as well as PA. Hope you find this helpful xxx

Hey tiffaney thanks you for your message, I shall look up the support group online and join. I was thinking about self injecting but I would think this would have an effect on the blood tests that the surgery does. If you are storing B12 (thats what I was told by docs) then the levels would be high and the docs would stop giving me b12 altogether. Im still tired and feeling knackered but heyho short of screaming and having a hissy fit what else can be done.

Do you have a hospital specialist? Can you get him on side - my DH had severe pain and his specialist prescribed a new treatment. When the GP practice refused, they were visited in person by the specialist who told them in no uncertain terms that when he recommended treatment, they abide by it - no further problems!

I too suffer from PA and have injections every 12 weeks. However, I don't really notice the fact that I am low after 10 or 11 weeks so I can only think that it is the sublingual methylcobalamin I take that helps? I know that those of us with PA cannot absorb much through the stomach but with the sublingual I believe part of it is absorbed through the skin (you keep it under your tongue for 30 seconds before swallowing) so that may help?? You can buy them on Amazon. However, regarding the question about whether your body will store B12 so you can overdose as it were - I remember reading that when there was the discussion concerning Bovine TB, one of the solutions considered was giving badgers huge doses of B12. I am not aware of why that would protect against TB but do remember that the paper concerned stated that B12 is 'pee'd' away if you have too much?? It might be worth reading up on B12. I am only given a blood test once a year (and then only if I ask) so stop taking the B12 sublingual a week or so before in case, as you say, they take away my injections.

if you are happy to pay for treatment maybe consider arranging a private consultation to see if they will give B12 on a more frequent basis?

Have u asked other practices if this is their standard length of time between injections?

From what you have said sounds as though the 12 weeks is what has been decided by the Commissioning Group in your area.
Have you tried discussing your concerns with your Practice Manager - they should at least be able to tell you if it is a financial issue rather than a medical one.
I am afraid that nowadays we have to be more forceful (in a nice way) to achieve what we know we need but there will always be constraints if the local Commissioning Group have set a particular standard.

I have pernicious anaemia and get the injection every three months. The nurse noticed that two of my unused injections had gone out of date. She joked "me and the other nurses will use them on ourselves to get some energy". Then she realised she shouldn't have said that so she made a big show of throwing them away!As to the three monthly question I think three months is the policy and you would be hard pushed to get the medics to change it.

cks.nice.org.uk/anaemia-b12-and-folate-deficiency#!scenario

Treatment for B12 deficiency....
For people with no neurological involvement....
Maintenance dose (where the vitamin B12 deficiency is not thought to be diet related): administer hydroxocobalamin 1 mg intramuscularly every 3 months for life (standard dose). Note that the manufacturers' licence is FOR EVERY 2–3 months.

if you look at these guidelines you will see there are two different outcomes for treatment:

www.buryccg.nhs.uk/Library/Your_local_nhs/CCGPlanspoliciesandreports/Treatment-vitB12-deficiency.pdf

Print this pdf off.

Outcome 1
Maintenance treatment for those
with neurological symptoms:
IM hydroxocobalamin 1000mcg every 2
months for life
Oral cobalamin is not recommended

OR

Outcome 2

Maintenance treatment for those
without neurological symptoms
where the underlying cause is not
dietary:
IM hydroxocobalamin 1000mcg every
3 months for life
Oral cobalamin is not recommended.

When the underlying cause is dietary,
please see overleaf for maintenance
treatment:

It seems that your original doctor was treating you as some one who had neurological symptoms
Treatment
For patients with neurological symptoms
Initial treatment:
Intramuscular (IM) injections of hydroxocobalamin 1000mcg every
second day until no further improvement
Maintenance:
IM injections of hydroxocobalamin 1000mcg every 2 months for life

The current doctor is treating you as if you had no neurological symptoms.

I think you need to establish what these neurological symptoms were etc. Did you see a consultant? I don't think yo have see a consultant recently as you have had this for such a long time. Whey not ask for a referral. Then check out on google the symsptoms so that any you have you remember to mention at the consultation. he will then write your new GP a letter.

These are some of your symptoms

Symptoms of pernicious anemia may include fatigue, shortness of breath, rapid heart rate, jaundice or pallor, tingling and numbness of hands and feet, loss of appetite, diarrhea, unsteadiness when walking, bleeding gums, impaired sense of smell, and confusion.

i assume some of these are neurological.

All the best.

This won't be helpful Grandelly54 but in my experience, most doctors hate the patient knowing anything or contributing any knowledge about their own condition. They seem to think they are the only ones who know how the body works. They can be quite touchy about it. My own GP was embarrassed when he tried to draw a diagram of the internal organs and I said, don't worry I'm a biology teacher. He screwed up the diagram and admitted I might well be able to do a better job of it!

Grandelly54 - with Pernicious Anaemia you have to take control of your own health, because very few doctors understand how you feel

I think that Loobs had the best suggestion - try taking a daily soluble tablet of "sublingual methylcobalamin". Search for that on Amazon and see what you fancy

I take the B12-Methyl from Bio-Tech every and it works for me

I agree with what others have said - you need to see a consultant physician/haematologist to establish the correct treatment regime for yourself. Ask, no, demand a referral. You know how you feel and that's more important than your GP's pettifogging protocols.
I get quite exercised about this sort of thing - rule number one in medicine is that a patient should be listened to! Best of luck, and I hope you are feeling more lively very soon!

I would say 'Change your doctor'! Ask for a second opinion. Maybe it is that in your area they are bound by what the CCG says they can do. If you are feeling that you cannot get out of bed then something is obviously wrong and you need it sorted out. Maybe it is not pernicious aneamia you have got but something else?

You could also enrich your diet by eating liver. That might help. Other food sources:

•Red meat, pork and poultry.
•Seafood.
•Beans.
•Dark green leafy vegetables, such as spinach.
•Dried fruit, such as raisins and apricots.
•Iron-fortified cereals, breads and pastas.
•Peas.

It all helps doesn't it.

Grandelly if you have Pernicious Anaemia your gastric parietal cells are compromised so you cannot absorb B12 through the stomach. B12 is water soluble so you cannot overdose on it, what you do not need (if any!) you pee out. I went for my B12 jab this morning and told the nurse how I feel and she has advised me to go back again to my gp, tell him exactly how I feel which is fine for a few weeks, tired for a few weeks, then knackered for the last 4 - 6 weeks before my next injection. Truly we should not have to live like this. I have tinnitus, no energy, shakiness and worst of all AMAG (Autoimmune Atrophic Gastritis). The actual phial of Cobalamin costs around 55 pence. Honestly if I could pay someone to inject me once a month I wouldn't hesitate. I am now seriously considering self injecting. Please join the group, you will be surprised how many of us are in the same boat and cannot get any joy from the NHS.

Grandelly if you have Pernicious Anaemia your gastric parietal cells are compromised so you cannot absorb B12 through the stomach. B12 is water soluble so you cannot overdose on it, what you do not need (if any!) you pee out. I went for my B12 jab this morning and told the nurse how I feel and she has advised me to go back again to my gp, tell him exactly how I feel which is fine for a few weeks, tired for a few weeks, then knackered for the last 4 - 6 weeks before my next injection. Truly we should not have to live like this. I have tinnitus, no energy, shakiness and worst of all AMAG (Autoimmune Atrophic Gastritis). The actual phial of Cobalamin costs around 55 pence. Honestly if I could pay someone to inject me once a month I wouldn't hesitate. I am now seriously considering self injecting. Please join the group, you will be surprised how many of us are in the same boat and cannot get any joy from the NHS.

Grandelly if you have Pernicious Anaemia your gastric parietal cells are compromised so you cannot absorb B12 through the stomach. B12 is water soluble so you cannot overdose on it, what you do not need (if any!) you pee out. I went for my B12 jab this morning and told the nurse how I feel and she has advised me to go back again to my gp, tell him exactly how I feel which is fine for a few weeks, tired for a few weeks, then knackered for the last 4 - 6 weeks before my next injection. Truly we should not have to live like this. I have tinnitus, no energy, shakiness and worst of all AMAG (Autoimmune Atrophic Gastritis). The actual phial of Cobalamin costs around 55 pence. Honestly if I could pay someone to inject me once a month I wouldn't hesitate. I am now seriously considering self injecting. Please join the group, you will be surprised how many of us are in the same boat and cannot get any joy from the NHS.

Grandelly if you have Pernicious Anaemia your gastric parietal cells are compromised so you cannot absorb B12 through the stomach. B12 is water soluble so you cannot overdose on it, what you do not need (if any!) you pee out. I went for my B12 jab this morning and told the nurse how I feel and she has advised me to go back again to my gp, tell him exactly how I feel which is fine for a few weeks, tired for a few weeks, then knackered for the last 4 - 6 weeks before my next injection. Truly we should not have to live like this. I have tinnitus, no energy, shakiness and worst of all AMAG (Autoimmune Atrophic Gastritis). The actual phial of Cobalamin costs around 55 pence. Honestly if I could pay someone to inject me once a month I wouldn't hesitate. I am now seriously considering self injecting. Please join the group, you will be surprised how many of us are in the same boat and cannot get any joy from the NHS.

Grandelly if you have Pernicious Anaemia your gastric parietal cells are compromised so you cannot absorb B12 through the stomach. B12 is water soluble so you cannot overdose on it, what you do not need (if any!) you pee out. I went for my B12 jab this morning and told the nurse how I feel and she has advised me to go back again to my gp, tell him exactly how I feel which is fine for a few weeks, tired for a few weeks, then knackered for the last 4 - 6 weeks before my next injection. Truly we should not have to live like this. I have tinnitus, no energy, shakiness and worst of all AMAG (Autoimmune Atrophic Gastritis). The actual phial of Cobalamin costs around 55 pence. Honestly if I could pay someone to inject me once a month I wouldn't hesitate. I am now seriously considering self injecting. Please join the group, you will be surprised how many of us are in the same boat and cannot get any joy from the NHS.

Grandelly if you have Pernicious Anaemia your gastric parietal cells are compromised so you cannot absorb B12 through the stomach. B12 is water soluble so you cannot overdose on it, what you do not need (if any!) you pee out. I went for my B12 jab this morning and told the nurse how I feel and she has advised me to go back again to my gp, tell him exactly how I feel which is fine for a few weeks, tired for a few weeks, then knackered for the last 4 - 6 weeks before my next injection. Truly we should not have to live like this. I have tinnitus, no energy, shakiness and worst of all AMAG (Autoimmune Atrophic Gastritis). The actual phial of Cobalamin costs around 55 pence. Honestly if I could pay someone to inject me once a month I wouldn't hesitate. I am now seriously considering self injecting. Please join the group, you will be surprised how many of us are in the same boat and cannot get any joy from the NHS.