I was diagnosed with B12 Deficiency with Pernicious Anemia in 2018. I was given the six loading doses and injections every 12 weeks. After about two years I was able to get them changed to every 8 weeks. Although that did seem to help I am still not feeling myself.
I keep track of all of my blood test results. Once I noticed the red blood cells were above the limit and when I asked about that I was told I didn’t have any other symptoms of anemia and nothing was done. A few months ago I asked for a basic check of my bloods because I do a lot of walking and just can’t seem to tolerate it. I get tired and slightly out of breath and really grumpy afterwards. I thought exercise is supposed to make you feel good, lol. Also more often than not I feel short tempered and disconnected somehow.
I asked specifically for my ferritin to be checked as it has never been checked at all. It came back as 21 where the limits are 15 - 300. Everything else was more inline with limits except for the usual high bilirubin count. I’d appreciate any thoughts or advice as I really, really want to feel normal again.
Thanks in advance. 🙂
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rubyone
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Thanks for your response, Nackapan. It’s been a very long road but I am determined to help myself as much as I can. I’ve given up dairy and gluten but do cheat now and then because it’s really hard. I gave up red wine and smoking about five years ago too. I’ve found I am very sensitive to preservatives so don’t eat many prepared foods either.
I always have a very slight vibrating feeling in my legs and chest and sometimes feel a little shaky in the morning. The scariest thing that happens during the four or five weeks before my injection is due is while I’m out for a walk and stop in a shop or to talk with someone, I feel like if I don’t hold on to something, I’m going to fall over. I end up walking around feeling like people will think I’m drunk or something. That feeling goes away after a bit of rest.
To add to all of that, my thyroid is apparently as large as it should be before intervention but all bloods always within range. I have tinnitus that I don’t expect to get any better from what I have read on here, Raynauds and Gilbert’s syndrome too. I take 1000 mcg of cyanocobalamin daily in hope that it does something good .
I suggest that you get more regular B12 injections. You have been diagnosed with P.A.
P.A. Most P.A. patients cannot absorb any B12 in their stomachs , so your taking Cynocobalamin daily will not be beneficial. A modest daily b9 tablet ( folic acid ) is advisable as it works together with B12 . If you cannot get more regular injections from your GP. , then I would consider self injecting . Like most of us are obliged to due , to keep well. Best wishes . .
Hi there, I agree with Wedgwood. It sounds like you might need more regular injections. I take heme iron supplements to keep munition and ferritin up. I can’t seem to absorb regular iron and this doesn’t have any side effects at all for me. I monitor my bloods every 4 months to check my levels. Heme iron has really helped raise my iron and ferritin and couldn’t recommend it highly enough. But it seems to me that you will also need to supplement your b12 injections by self injecting.
I'm a [retired] scientist, not a medic. So, I can't give advice, however, I can try to fill in some of the gaps.
You mention the 'usual high bilirubin'. Has it ever been down in the 'normal range'? Likewise, you mention your red cells being 'above the limit', but which limit?
Bilirubin is a breakdown product of Haemoglobin. We often see a mild increase in PA at diagnosis, and this is generally due to megaloblastic changes in the bone marrow, as your marrow tries its best to make good red cells, but is a bit 'flaky' due to the deficiency of B12. [Same thing can happen with folate.] This will normally be cleared on effective treatment of the deficiency, and it should not take too long either.
To absorb iron efficiently from your diet, you need an acid environment in your stomach, but this is reduced or lacking in PA.
Some idea of what your blood results are, and how they've changed over time, might help to shed some light on the subject. There are other causes of raised bilirubin that aren't associated with PA. Life's complicated.
That's a tricky one. It would be fair to assume that you were able to absorb iron from your diet. However, it's easy to interfere with iron absorption anyway. A cup of tea at the same time can impair the absorption, whereas a glass of orange juice would probably help in absorption. It's all far too complicated! Claims that cereals contain iron is another confusing one, as cereal-bound iron isn't as easily absorbed.
I realise I'm going off topic, and I probably annoy folks by constantly reminding them that iron tablets MUST be kept secure, and out of the reach of children. I've seen one fatal poisoning of a child from mum's iron tablets, and consequently, I'm not giving in any time soon on that one. This one happened within about an hour of mum picking up her tablets.
I'm not medically trained but suspect you might need B12 injections more often.
Do you have recent results for folate, ferritin and other iron tests and Vit D?
Forum members often report deficiencies in these as well as B12.
It's also common for forum members here to have thyroid issues. Might be worth putting any thyroid results on Thyroid UK forum on HU along with an outline of your story.
If you had or have neuro symptoms, I would expect you to be on the treatment pattern for those with neurological involvement in link below. See Indications and Doses section.
Thank you so much to everyone who responded. I’ve attached pics of past bloodwork results which will give more info. I do have an appointment with the practice nurse regarding cholesterol, which honestly was a shock to me as I eat pretty healthy, but will go and learn what I can. I’ll take that opportunity to discuss what I learn here and see where it takes me. I did mention to the doctor last time I was there that if nothing was found in my bloodwork, I would consider injecting myself but didn’t get a response.
Fascinating. You have a constant very low grade raised bilirubin, and I suspect you've always had that, and always will. Your Hb is maintained very well indeed, so there isn't much of anything going on. Don't panic, and don't worry.
Thanks for that, FlipperTD. My doctor once mentioned something called Gilbert’s Syndrome when talking about the elevated bilirubin but I honestly don’t know if I have been diagnosed with it or not.
There are others. Hereditary Elliptocytosis isn't uncommon, and that can manifest itself with a very mild jaundice, but a smart haematologist with a microscope can spot it with ease. Like Gilbert's syndrome, these are just bits of genetic polymorphism, rather than 'diseases'.
My ferritin hovered around 30 for two years and I had all the additional symptoms of ferritin deficiency (very similar to B12D) I had been SI EOD for over a year and had reached an improvement ceiling. I concluded it was ferritin from blood tests over a period of time. On a haematology specialist website 30 is regarded as borderline deficient. There was my answer. I had a ferritin infusion and have been improving ever since (now 10 weeks in). My motto: always question primary care ranges. One size does not fit all.
A ferritin level of 21 is very low and suggests iron deficiency, with or without anaemia. I'd get a full iron panel done and seek advice from a specialist who will understand the results.
More B12 sounds like a good idea too, so good iron stores will be even more important. Mine dropped steadily after EOD injections started and 5 months in I needed an iron infusion.
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