Pernicious Anaemia Society
15,540 members10,928 posts

Just a little moan

So since being diagnosed a couple of months ago I have had all my loading doses and do feel a little less tired. Apparently my B12 was 70 and told I shouldn't have any symptoms by 1 GP!!!! The thing is I do feel a little bit better but not alot. I think I might have been putting a brave face on it for a while. Now I know what's wrong but having treatment I am still so tired. I was so fit a year ago but now can't climb the stairs with out struggling. Sorry for the moan 😟😁

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Hi RJGFiona you are welcome to have a moan, however 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.

If you can get to see a doctor please also ask him/her to check your Folate level as this and B12 help your iron to make red blood cells and to function properly.

Do you have any idea why you became so deficient in the first place?

I am not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years.

I wish you well.

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Hi no I have no idea why I became deficient, just know my B12 was 70 but had to ask for that result. Are you from UK because you are very well informed which we are not here. I was made to feel like a moaner with a condition that is easily treated, their words not mine x

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Anyone at any age, can become B12 deficient. However, certain people are at an elevated risk. They include the following:

Vegetarians, vegans and people eating macrobiotic diets.

People aged sixty and over

People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).

People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications, or infections such as h-pylori that can interfere with B12 absorption.

People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.

People with a history of eating disorders (anorexia or bulimia).

People with a history of alcoholism.

People with a family history of pernicious anaemia.

People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).

People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.

People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.

Women with a history of infertility or multiple miscarriages.

Can you see yourself in any of the above people?

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Sorry non of the above. Think I just need try and see the GP. Sorry to keep asking but which country are you from?

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I was born, bred and live in the U.K.

Do you eat plenty of meat, fish, eggs, seafood. poultry. dairy produce as these are the natural sources of Vitamin B12?

If the cause isn't dietary then it is an absorption problem so you need to find another way of replenishing B12 initially. Most absorption problems aren't treatable but a few are - notably h pylori infection - which would mean that once that has been dealt with you would be able to absorb B12 from your diet so wouldn't need maintenance shots for life.

Have you been tested for Intrinsic Factor Antibodies (IFA)?

Sadyt the IFA test is unreliable in that it gives false negatives in people with PA half the time. So a negative result doesn't mean that you don't have PA. However, a positive result is a sure-fire, 95% certain indicator of PA.

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Hi Clivealive, I've been told it's not dietary and it is due to me not having an intrinsic factor so will be on injections for the rest of my life. Think I just need to be a bit more patient but it's very frustrating. You're very knowledgeable and your posts are very helpful thankyou x

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Here is an explanation of Intrinsic Factor.

In a normal healthy person the stomach lining has what are called "Gastric parietal cells" which produce "Intrinsic Factor" which travels with food through the small intestine which is made up of three parts - the Duodenum, the Jejunum and the Ileum.. Iron is absorbed in the Duodenum, most other nutrients in the Jejunum and our friend B12 in the Ileum.

Here the Intrinsic Factor binds to the B12 and the "B12/IF Complex" enters the cells on the wall of the Ileum after binding to receptors on the surface of the Ileal cells, allowing it to enter the blood stream.

Sadly some people with "traditional P,A." either do not produce Intrinsic Factor or if they do, they also produce an antibody which destroys it and it is then called "Autoimmune Pernicious Anaemia".

In addition it can happen that we produce "Parietal cell Antibodies" and "Intrinsic Factor Antibodies" which totally wipes out any chance of absorbing the B12.

So you need not worry about B12 or Intrinsic Factor as you, like myself, are now on injections for the rest of your life.

Over 46 years ago my then doctor gave me "two years to live - unless I ate raw liver three times a day or had B12 injections every four weeks for ever after"

I chose the injections and I'm still "clivealive" now aged 77.

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Yes you're right , I took omeprazole high doses for about two years for a health issue, it damaged my parietal cells in my stomach and that's why I have PA....but that's just life x

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That is a perfect answer Clvealive. I am 7months into having a Pernicious anaemia and feel well.....by that, I don't mean perfect, as I get tingling in my toes and two finger and have off days and electric pangs in my head ha ha ha! so will have to see my GP. Yesterday I shopped fully for the first time in 2 yrs plus went to a 21st party for a short time and honestly felt good xx

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I'm so sorry to hear you have been struggling so long. My B12 was 180 when I went in with symptoms: crippling fatigue, loss of appetite, shortness of breath, dizziness, bouts of blurry vision, and unsteadiness when walking. Turned out I have pernicious anemia. Your B12 is much lower than mine was and your doctor should have taken you seriously. It took me a couple days to feel better after my first shot and a few weeks to start feeling normal again. Since your B12 was much lower, it may take more time to feel better? If you notice things don't get better I would definitely follow-up because I've read that long-term B12 deficiency can have perminant neurological issues in some people.

I hope things improve for you.

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Can I ask what country you are from because in the UK where I am from they only treat from the B12 being 115 with symptoms. It is nearly impossible to speak to a GP let alone see one. I think I need to insist to see a GP x

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I'm from the US. Here, below 200 is considered a deficient so they treat, at least thats what my PCP told me. I'm now being treated once a month for the PA. Does GP stand for general practitioner? I'm just trying to make sure I'm understanding. Also, it never hurts to follow-up.

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Hi yes GP stands for General Practitioner. It's interesting how the same condition is treated differently. Thanks for the reply x

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I think it depends on the doctor and results...and maybe country as well. The doctor I had before this one told me that every ailment I had was because I was overweight and refused to do any testing or anything. I recently switched and the doctor I have now is much more helpful. But is is very interesting the gap there seems to be in medical care and knowledge about the condition. You would think there would be some more communication in the medical world?

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Do you know your Folate level ? Also Ferritin and VitD as they too may be low and causing symptoms. As you have been told you will need injections for life then did you have PA confirmed ? Have tried reading through your earlier posts but could not find anything about PA. Hope you feel better soon ...

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Hi yes they have confirmed I have PA they did test my vitamin D and said that was ok. Think I just need to be abit more patient and if I still feel the same in a couple of weeks I'll contact the GP for advice. Thanks for the reply x

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Sorry I must have missed that ! Do you know your Folate and Ferritin levels ? When the GP says a result is OK - they usually mean it is in range - however it is where you are in the range that is the key to wellness. VitD needs to be at least 100 if in the UK.

Folate and Ferritin are good around mid-range.

You are legally entitled to have copies of all your test results so you can monitor your own progress and check what has been missed. Surgeries should now have records on-line and with enhanced access you can view your test results. Sadly many have not managed it !

Are you taking folate or a B complex with the B12 injections ? Folate and B12 work together in the body in an important way ...

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Hi marz, no I don't know about my folate or ferratin levels. I haven't even managed to physically see a doctor only spoken to them over the phone. My next injection is due in November but if I don't improve in the next few weeks I am going to have to attempt to see the GP. Thankyou x

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I still am prescribed folic every second day, yes it is so important x

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You can phone and request all results with ranges and say you will be along to collect in a few days ! Or phone to enquire about on-line access .

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Folate and vitamin D are important. When I went in, I had high folate but low vitD. Both can make you feel really crappy.

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Hi I'm the same my level was 48 ... 5 months later I'm still the same I can do things but when I do I can't walk the next day still very tired and feel sick a lot.. I've just returned to work but only doing 2 hours a day and I'm so tired I have nerve damage in my feet threw the illness x

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I know how you feel, it is so frustrating I used to be so active. I hope you feel better soon x

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Yes it's horrible I've had enough now thank you hope you feel better soon too x

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Oh Dawn, I forgot about the nausea. Strange how we all live with these symptoms and now that I feel well, I am forgetting that I feel sick some days, mainly in the morning. It's minor to everything else that I had prior to diagnosis. The tingling in my toes and fingers plus the Zappa in my head made me think I initially had MS and I even thought I may have had a brain tumor or Alzheimer's.....

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Yes my nausea is when I wake up too .. I knew straight away I had b12 but doctors stoped injections years ago x

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Hi RJGFiona,

I am sorry to hear that you have been struggling with B12 deficiency. You don’t say if you have any neurological symptoms ie tingling, numbness etc. If you do, then you should have alternate day injections until symptoms stop improving according to the NICE guidelines. GP’s don’t seem to have very much knowledge about B12 deficiency and believe that once your levels are in normal range that you are all better. Most of the people on this forum will tell you that isn’t the case and symptoms linger and may never completely disappear. It seems to depend on the person and how long you were deficient for. The 3 monthly b12 injections which seem to be the default position for gps is often not enough which is why in the absence of a good GP a lot of people seem to resort to self injecting .

If you haven’t already, I would recommend you have a look at the pernicious anaemia society website. It’s full of useful info and you can get advice if you join.

I hope your symptoms resolve quickly for you x

Padders12

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Hi Padders, I will definately take a look at the site 👍 I don't complain that's my problem. I had my ears tested a year ago and they were writing to doc, but I never followed it up! Thanks

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Hi

Padders12, My English is not much good so please try to understand me. I am also feeling same kind of symptoms as like you last two year, one year ago I found b12 deficiency(210) and my doc gave me 10 shot injection but no improvement my symptoms was getting worse. Last month checked my b12 level(340). and my symptoms getting worse than previous please help me out if you got any suggestion to me.

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I start to strugg!e probably about 6-4 weeks before my top up is due! My eyes become gritty and ringing in my ears more noticeable, also light headed. I get quite anxious when out and about if light headed! Which certainly doesn't help 😖 keep thinking one day 😏

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It's so hard, hope you get these symptoms sorted, must be soul distroying xx

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I need to ask questions, but sometimes the language barrier is difficult in my surgery! Thank you x

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RJGFiona, can I ask you why you have problems climbing the stairs. Do you have pain or stiffness. My husband who is newly diagnosed has lots of pain and stiffness. I'm just trying to see has anyone else his type of symptom. His B12 was under 50. He finds it hard to climb a stairs also, or get up our of a chair, all because of pain and stiffness. He's very tired also.

I'm wondering is it a long road for everyone. Thanks.

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Hi not pain but stiff and aches in my legs also breathless. My B12 was 70 at diagnosis. I can only imagine how poorly your husband felt at 50. I hope he improves soon and doesn't have a battle on his hands to get the correct treatment x

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