Producing new red blood cells

[B12newby]

I have Haemochromatosis with mild iron overload which requires regular blood letting (venesections) until my ferritin reaches an optimum level of 50 with a transferrin saturation of below 50%. The venesections should be weekly but for some reason my body can’t tolerate this so I am having monthly sessions. It takes me well over a week to recover I feel dreadful with breathlessness, fatigue and palpitations. My question is could it be my low B12 that is causing the issue? My haematologist and GP say not and say it’s just one of those things; but I am otherwise healthy. I have NOT been diagnosed with B12 deficiency, my B12 levels have been consistently around 200 for at least 10 years

Recent blood tests below

Appreciate any advice

[crushing]

Not sure why they’d want you all the way at the bottom of iron range. I would think mid point would be fine and then watch it and have blood letting done when it gets closer to upper range. Not a dr. Though.

[B12newby in reply to crushing]

That’s standard treatment for people with haemochromatosis 50/50 target. The ferritin has to be reduced dramatically before the transferrin saturation will start to reduce. Although I’m no where near this. I’m really interested in whether my B12 levels could be impacting my ability to replace the red blood cells and hence causing my dreadful symptoms after each venesection

[crushing]

Certainly possible. Can’t hurt to take injections. I’m on my 2nd week of injections and I feel worse since taking them. I’m hopeful it’s just the loading phase. Really hoping it my breathlessness and dizziness will subside soon. Good luck and sorry you are feeling rotten.

[Buttercup1283]

My blood levels are high but they won’t do any blood letting or any treatment. They just leave it.

Haemoglobin 164, platelets count 463, red blood cells 5.22, heamocrit 0.519, mcv 99.4 and sedimentation rate 44

My b12 was 170 but usually floats around low 200. I don’t think b12 makes my high iron. My folate was low if I remember.

I have rheumatoid arthritis and they just blame everything on the immune system

[suztango]

Do an MMA test? As I understand it, this would give an answer. And also intrinsic antibodies test (however this is only positive in 50% of cases). Both should be done before starting B12 injections. Don’t take any B12 supplements of any Kind until you are properly diagnosed

[Cherylclaire Forum Support]

This is a strange dilemma.

There is obviously a routine treatment for haemachromatosis with very different targets. We are not medical experts, and haemachromatosis an unusual condition, especially on this forum I would imagine as if anything, the opposite is true: difficulty keeping ferritin levels up. Is this hereditary ?

My B12 was considered as below range at 196 ng/L (local range being, luckily for me, 197 - 771 ng/L).

I often have low-range ferritin and folate despite daily multivitamins and minerals tablet and diet and have to supplement on top of supplement to raise it. Vitamin D on prescription due to osteoporosis of spine, Thyroid checked regularly too as this can start to struggle. These are the most likely accompanying problems associated with B12 deficiency and, with PA especially, other autoimmune conditions .

The target set for my ferritin (by Oral Medicine consultant) was 80ug/L (range: 13-150ug/L) - ideally for ongoing tongue/throat/lip problems, but struggling to raise it even with additional ferritin tablets. GP says generally can be symptomatic for iron deficiency if less than 60 ug/L. Of course, none of this applies to you.

MMA test may provide an answer for you however.

I have been having trouble with getting rid of some symptoms, even when self-injecting frequently for a couple of years. My MMA was found to be raised at 350-400 nmol/L (range: 0-280nmol/L): this was not considered high enough to be an indicator of B12 problem- so has been decided that this is my normal level.

Significantly higher levels can indicate a B12 deficiency confirmation as long as renal function checked as being fine . SIBO (small intestine bacterial overgrowth) can also raise MMA, but that is also likely to cause a B12 deficiency in any case, as the bacteria steal it from you !

I'd also check a comprehensive symptoms list such as that on the Pernicious Anaemia Society or B12 def websites. GPs seem to have a very much shorter list to work from and do not always recognise symptoms that are quite familiar to most people here.

I wouldn't wish it on anyone, but visible symptoms help, over time, GPs to become more aware of how you are doing ! It helps in that case to stick to the same GP so make sure you have a good one (one who looks at you, not just the screen !)