H H with constantly lower scale serum ferritin readings?
Posted , 2 users are following.
HI Everyone,
I have HH ( C282Y x 2) which when first diagnosed started off with serum ferritin at 221 in September 2017. After having a few venesections my SF lowered quite quickly. My problem is that since May 2018 my ferritin levels never seem to get any higher than in the mid to late 20's?? I haven't changed my diet and still eat red meat and iron rich foods as I've always done. My latest reading last week was 29.4I feel constantly weak in my legs, get bad cramp in lower legs and feet whilst lying down and feel poorly most days with headaches, nausea and fatigue which has been going on for a while now. I am told by the GP office when I phone for my blood results that they are ' satisfactory'?? What I do wonder is if there is anybody else having HH getting consistently lower end SF readings like myself? This has been going on for over a year now and I don't understand whats going on? I'm beginning to think I don't have HH at all even though genetic test confirms it?! If anyone else is the same please get in touch as any help/advice is much appreciated. Thanks Everyone x
0 likes, 3 replies
sheryl37154 Chelle69
Posted
Hi Chelle,
I am homozygous C282Y too, diagnosed 21 years ago, and for a year or more have been keeping my ferritin levels in the low 20s with no side effects. I still have 3 monthly vx and they have finally brought my TS% down to normal range, while my ferritin barely moves.
You do not say if you are still having maintenance vx, nor do you say if you are still menstruating which would help with lowered ferritin. Unless your Hb is too low, you should not be having issues caused by low ferritin. I have checked with my haemotologist a couple of times for assurance that such low ferritin levels would cause any issues. He said no, you can keep it at that level. Even when a phlebotomist phoned him to enquire about it, he assured her that it will do no harm to me. However, I am going to try extending past 3 months by a week, then by 2 weeks etc now that my TS% is in normal range to slowly test the waters.
If I jump to 4 monthly, as I did many years ago, my ferritin shot up to 80 (not high) and I had arrythmia and chest pains. Then I had to go back to 2 monthly. I do not want to go back to that again. I still have body pain and fatigue, and short days, but no where as bad as I did in early years, particularly in the 9 years before I was diagnosed.
If all other Iron Studies levels are ok as your dr says (do you ask for copies of your results?), then perhaps look at other reasons for your issues.
You can have HH genetically but not load iron and as your level was not high in the first place, then as you have now been de-ironed, you are not loading again. My husband is the same. His level stays at about 34. Drs have worried that he has internal bleeding and order colonoscopies but they are clear. His Hb is good - this would be low if he did have some form of blood loss. And he loves his red meat too.
How is your Vit D? If it is low, try a practitioner's brand of Vit D3 forte drops. Tablets are a waste of money. Also you might benefit from Vit B12 injections. My levels are in normal range but my gp believes that there are benefits of B12 injections are worth doing. Read up on both and see if deficiencies in these are consistent with your problems. Everyone mentions Magnesium for leg cramps and aches.
Let us know how you go.
Chelle69 sheryl37154
Posted
Hi Sheryl,
Thanks so much for replying and the information which is invaluable at the moment as it seems I've just been left to deal with HH and put on what they call a 'remote service' in Scotland.
The last time I had any interaction with the heamatologist was in November 2018. I am due to go back this November. As for Vx I have not had any since April 2018 and don't have any maintenance Vx or get any form of maintenance check on a regular basis.
I don't know what my TS% is?? it was at 18% in May 2018, then when it was last done in November 2018 it went up to 34% which was the last reading I had done.
I am in my 50's so have very light bleeding, if any at all, on a monthly basis. So it's not due to menstruation. I did used to have heavy bleeding when I was younger but had ablation treatment in my 30's for that. I just tend to worry as recently found due to a US scan that I've got an Hemangioma in my liver and a small cyst also on liver, as well as a small gallbladder polyp. I do worry that these are taking the blood/iron and keeping it at low levels and causing my problems. Probably me just over thinking things and worrying!
Thanks also for the info also on the leg cramps I shall look into getting some magnesium for those.
Thanks again for all your help and info Sheryl and I hope you and your family are keeping well
Best wishes x
sheryl37154 Chelle69
Posted
As your TS% is within range, it means you don't have aggressive haemochromatosis, so I would not worry about that - just keep being monitored and 12 monthly is not too bad for such low numbers as you really are within normal range.
You are probably not feeling well because of your other issues. I would focus on these if I were you, and ask what can be done about them. I don't know if they are a serious sign of anything, but if they are making you feel well below par then you want them treated.
Good luck with it all, and let us know how you go.