8 years of anemia despite PA diagnosi... - Pernicious Anaemi...

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8 years of anemia despite PA diagnosis and consistent treatment

Bandit224
Bandit224

This will be quite long as my history with anemia has been ongoing and frustrating for years (as well as confounding to my doctors). I was diagnosed with PA 8 years ago with "marginally low" B12 (US 212 with range 200-900), positive intrinsic factor blocking antibody test, and macrocytic anemia. I was also diagnosed with G6PD deficiency at the same time (though I have never tested positive for a hemolytic event contributing to anemia).

Since that time I have been anemic despite B12 loading doses, monthly injections (cyano), folic acid supplements, and the occasional iron infusion (my iron levels are generally normal but have had a few low times over the years and I am now on supplements for that as well). In the last year I have also had on and off neutropenia (low WBCs), consistent low red blood cells, and low mean platelet volumes. Other history: I have maintained a very low Alkaline Phosphatase and have never had the typical high level of homocysteine or MMA since testing started.

Most recently (the last month and a half) I have started experiencing quite a lot of bone pain in my legs and burning feet along with numbness in my fingers (primarily in my outer fingers - pinky and ring). The bone pain has progressed to now including sharp pains and I sleep each night with a heating pad and some days I am completely immobile. I can only wear tennis shoes now as the shock of walking is too much without thick rubber soles.

I am on D3 (10000 ius per day) due to deficiency, and I take all relevant cofactors - magnesium, K2, methyl folate, etc. My doctor has switched me to hydroxy and put me on an every other day SI schedule of 1000mcg. I have been on this regime for over a month with no relief and no change in the anemia or neutropenia. I also now have a low reticulocyte count despite now high results for B12 (>1900), Folate (>18.2) and increasing D levels and the anemia remains normocytic and macrocytic.

I know I am luckier than most to have doctors actually listening and I count my blessing for that. I will say that learning my body, my normals, and keeping track of all blood work has made a huge difference in their attention so I beg all of you to continue to be your own advocates. I have also never hesitated to find new doctors when I find myself getting the runaround.

As of now, I am scheduled for a neurology appointment and a bone marrow biopsy (presumably to rule out myelodysplastic syndrome?) next week. I know this has been long, but this is the most knowledgeable group I could find and I wanted to be sure to answer what seems to be the most common questions.

I would love any other advice, thoughts on the bone pain (they have given me tramadol which I can only take on weekends due to the brain fog) and I also take regular Epsom salt baths and use a magnesium topical lotion.

What am I missing? Has anyone been through similar? What helped you deal?

Feel free to ask me any questions, I have all test results and will answer anything that might add more insight.

9 Replies

Hi! I'm impressed by what you say and the level of care that you have received.

There are quite a few of us who cannot manage on even 1000 mcg (1mg) hydroxocobalamin every other day and need much more than that before we get any improvement.

For the last 3 years I have used stronger 1.5mg in 1ml Pascoe brand ampoules for my every day injections and I know of several who need two jabs every day to give them either 2mg or 3mg hydroxocobalamin daily. There are some people who have successfully been on daily jabs for decades.

If our B12 is ever tested it's off the scale and the health professionals are convinced we are killing ourselves and should have died! No one can explain how come that's the only way we can not only survive but actually minimise the symptoms and continue to improve, with slow but steady improvement of our neurological damage.

Most of us need unfeasibly large amounts of the supporting supplements too. I need beyond theoretically toxic levels of most things every day just to stay alive and even more if I want to continue to improve. If anything upsets my intake of the other supplements all my B12d symptoms return and I struggle to survive... But as soon as I can get my levels up again I'm able to live nearly normally!

I'm sorry this is all anecdotal but it doesn't seem that there is much hard copy information available. The information leaflet with the ampoules does mention every day injections so the pharmaceutical companies must have done some trials work on it and have some knowledge but I haven't been able to get access to it.

I am not a doctor buy maybe there is another reason. Please check your active vitamine D level, your PTH level and calcium to check if you do not have hyperparatheriode.This causes bonepain etc. Most doctors do not check active vitamine D (1,25) but if the value of this active vitamine D is high and your vitamine D (250) is low, you never may take vitamine D pills.

Gambit62
Gambit62Administrator

Was the G6PD deficiency diagnosis the result of a comprehensive genetic panel? If so did that throw up any other genetic anomalies.

Have you been tested for Hashimotos recently? 40% of patients with PA go on to develop hashimotos thyroiditis and there is a huge cross over with the symptoms of PA.

Thank you all for the replies , if nothing else it feels good to have other folks validating and looking at this with me. deniseinmilden I am beginning to believe that will be the case with me. I am willing to give it a try and up the injections to daily and further increase some of the other vitamins as well (D3, Magnesium, Folate). Anecdotal is better than confusion! Linde19 I did have hyperparathyroidism ruled out recently (we checked D, Calcium, and PTH in a single draw). Those results were all within normal range but did show an increase in Vitamin D over the prior draw proving the supplements were at least helping in that regard! Gambit62 No, that's the odd thing. My genetic workup does not show any indication of G6PD Deficiency (at least on 23 and Me which I know does not test all variants). It was diagnosed due to serum testing showing practically no G6PD enzymes in repeat draws. I was tested again for hypothyroidism in August (I am tested annually) and TSH, Free T3 and T4 were all within normal ranges. We did not repeat the AntiTPOs at that time.

I was diagnosed many moons ago with both PA and vitamin B12 and D deficiency and also anaemia due to lack of iron. Currently not anaemic at the moment, but I do have burning sensation in my feet, but I put that down to the oedema - having you any swelling in your feet etc?

I also get a lot of pain in my fingers which is arthritis and a long ongoing and crippling problem with my back. (Unfortunately that falls on deaf ears). It is affecting my hips too. I did have a bone density scan, but my risks were low regarding fractures or problems in the near future.

Out of interest Bandit224, have you been checked for thyroid conditions? Sometimes the symptoms are very similar and they can walk hand in hand with B12, Vitamin D deficiency and PA.

Take care :)

have you been breath tested for h pylori? it is a known cause of b12 and iron deficiencies. i had it without the classic symptom of heartburn. i only had nausea and feeling full quickly. my b 12 was 169and D was 20.

i had to go through 2 rounds of treatment as the first didnt work.

it took 8 months after h pylori eradication before i could finally get off injections. i guess that is how long it took for my stomach to finally heal. i had been getting injections every week or 2 prior to 7-6-18 and each test showed my b12 was continuing to drop. but after that injection i haven't felt the need for an injection and on 8-28-18, appox 45 days since my last injection, my b12 had increased to the highest ever, by far, of over 1300.

it was strange because i tested one week after injection on 7-13-18 and it was 1072, which was my highest ever, to that point. usually in 800s after 2 weeks.

best of luck and health.

JOLLYDOLLY I do get swelling in my feet but it does not seem to be connected to the burning sensation (they occur separately and together). I have been tested for rheumatoid arthritis which was also negative and I have no physical indications of arthritis beyond the burning and numbness in my fingers. And yes, see my responses above, I am tested annually for thyroid conditions and those results continue to show in the normal ranges. If your concerns are falling on deaf ears, can you find new doctors? I don't hesitate to "fire" someone from my medical team if I feel they are disinterested in my concerns. Hugs to you! KimberinUS I have not had the hpylori breath test though I did test positive for Intrinsic Factor Blocking Antibody which is the presumptive reason for my b12 deficiency. I understand that both could feasibly be happening so I will ask my doctor about it.

Just updating here as I have now had a Bone Marrow Biopsy and it did not reveal much of anything new. There were minor changes in my bloodwork that indicate some destructive process but nothing that is diagnostic of cancers of the blood or marrow. The Hematologist thinks I am just a slow responder to the B12 and that this is still my issue. I am not convinced that this makes sense as everything I have read has indicated that if B12 was the issue, then the counts should have rebounded by now but they have not. My search for answers continues and if I find out anything new I will update again because I do hate when I read a thread that sounds like me but has no closure!

Hidden
Hidden

Νocinection g6pd with all that, bur are you avoid the triggers??? If you eat or drink or any think fron avoid list you always anaimic withinotmeithout serous hemolysis. Avoid any supplements before you check ingredients.G6pd can't lead to other problems, don't read nonsenses

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