RBC advice

[brenanddave]

Hi everyone! I hope you are all doing better than yesterday and that tomorrow will be even better. I have been SI twice daily and taking all cofactors for around 9-10 months now along with 1100mg of gabapentin (unfortunately)and though I am feeling alive again in so many ways I am still struck every afternoon with sudden exhaustion and eyelids that suddenly feel like they are too heavy to hold open. This fortunately passes after a couple of hours unless I have been pushing myself too hard. At this point, my neuropathy represents itself just enough to remind me that unless I want to take more gabapentine I have to just rest more the following days. I have noticed in my blood tests that my RBCs are still right at the bottom of the scale and about the same number as when I was first diagnosed. Why has this not gotten higher with treatment and is it why I get sooo tired? Also, would an extra b12 help sometimes? Thanks in advance for your help x

[Technoid]

Iron can also be something to check (ideally via an iron panel).

[brenanddave in reply to Technoid]

Thanks Technoid I have hemochromatosis which may complicate reading things as I have no idea how it factors in. Just that ferritin gets high with that and b12 inj lower it. my iron Saturation is high also

[brenanddave in reply to Technoid]

Serum iron 20 umol/L (10-30)

Transferrin 1.8glL (1.7-3.4)

Transferrin Saturation 0.60 (0.15-0.50)

Ferritin 278ugl (20-380)

[Technoid in reply to brenanddave]

I'm no expert on Iron but provided inflammation is not involved, that transferrin looks healthy enough to me.

[Technoid in reply to Technoid]

At 60% your transferrin saturation might be too high. (should be under 45% according to this Mayo Clinic article):

mayoclinic.org/diseases-con...

Too much iron can produce similar symptoms to too little so maybe you need to review your hemochromatosis management protocols.

FlipperTD may have some input.

[brenanddave in reply to Technoid]

Unfortunately the doctors don't seem to have the knowledge of how to treat it. The last time I had a venesection I had to request a third one for the same reason. They did not feel it was necessary aahh!! Thank you Technoid! I will read the mayo clinic article. I am aware that I have two chronic conditions and I feel that if one is not optimal that it might have a baring on the other. Once again the medical field are happy to keep us at a suboptimal level which inevitably means we need drugs to compensate. So frustrating.

[Nackapan]

I don't know why but even i stated b12 injections my iron / ferritin levels dropped.

I've never been anaemic.

Never needed iron supplements before this condition/ disease.

I now take a maintenence dose of iron.

I alternate between

Spartone

Solgar gentle iron 20mg

And ferrous fumarate 210mg.

After initial prescription of z higher dose mixed with folate ( I coulnt t tolerate )felt ill on it with diarrhoea .

I've had little guidance in what to take .

I have regular blood tests .

Were 3-= monthly

My first 6 monthly one due next month.

I've no medical knowledge as to why but when I was on EOD I needed more iron??

I also alternate multivits both with s low dose of iron.

14mg

Hopd you improve day by day too

[brenanddave in reply to Nackapan]

Thank you Nackpan I have hemachromatosis so iron is always high so I can't see how that will effect it to be honest. Just trying to work this last bit out aaahhh!! It is like a constant puzzle. xxx Serum iron 20 umol/L (10-30)

Transferrin 1.8glL (1.7-3.4)

Transferrin Saturation 0.60 (0.15-0.50)

Ferritin 278ugl (20-380)

[Nackapan in reply to brenanddave]

Oh yes it would be ! It's complex isnt it .

An expert eye is needed to go over your bloods .

Or at the very least give an explanation.

[brenanddave]

These are my other results, 14 feb 2024 RBC 3.91 29

mar 2023 my RBC was 397 (360-560) when diagnosed.

The following are 14oct 2024 Heamaglobin 125gL (115-155) HCT 0.37LL (0.35-0.46) MCV 94 (80-99) MCH 92.0 (27.0-33.0) Platelets 237 (150-400) WBC 5.6 (4.0-11.0) Neutrophils 2.8 (1.9-7.5) I would have expected my RBC to be higher. Any help spotting what might be going on will be very much appreciated. thank you

[Orchard33]

Check your ferritin level. Some of us need a higher level than guidelines indicate. As ever, one size does not fit all.

[brenanddave in reply to Orchard33]

Thanks Orchard33 my levels are Ferritin 278ugl (20-380) have hemochromatosis so usually high.

[FlipperTD]

Scientist, not medic.

The numbers would help! If you study your blood results, then there will be other indicators. If you started out megaloblastic, with a macrocytic picture [raised MCV] then on treatment your MCV should fall to within the normal range. Without the numbers involved, it's hard to add much; sorry!

[brenanddave in reply to FlipperTD]

Thanks Flipper! Yes I did start out megaloblastic with raised MCV and my level has come down with treatment SI twice daily b12

These are my latest results, 14 feb 2024 RBC 3.91

29mar 2023 my RBC 3.97 (3.60-5.60) when diagnosed.

The following are 14oct 2024 Heamaglobin 125gL (115-155) HCT 0.37LL (0.35-0.46) MCV 94 (80-99) MCH 92.0 (27.0-33.0) Platelets 237 (150-400) WBC 5.6 (4.0-11.0) Neutrophils 2.8 (1.9-7.5) I would have expected my RBC to be higher. after treatment. Why is this? I am wondering if it may explain my waves of exhaustion. Thank you again. x

[FlipperTD in reply to brenanddave]

Simple answer: Don't fret about the RBC count. It's normal. If the MCV has come back into range and your Hb is good, then you're fine. The Hb level is the key finding. Once that's within range, then your body just maintains homeostasis due to some very clever stuff managed by the kidneys secreting Erythropoietin. A higher red count or Hb wouldn't help unless you were competing in the Tour De France and abusing Epo. [they don't do that, or shouldn't.] It gets very complex with viscosity; as the Hct rises, so does the viscosity, and it gets more and more complex!

Good luck, btu it sounds like you're doing well.

[brenanddave in reply to FlipperTD]

Wonderful! Thank you for your time and explanation. That is very reassuring for me. We are very blessed to have your support in this group. x I wish you all the best x