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[Gladys23]

Hi I have had haemochromatosis for 10 years and have always had venesections but now my ferritin is very low 14 and no venesection for over a year. Been suffering for constipation for 2 years. Anyone had ferritin drop no blood letting please ?

[SonsyLass]

Hi Gladys, the same thing has happened to me. I am 70, and I have not needed venesection for nearly four years now.The haematologists ask me if I have heavy nosebleeds, passing blood in stools, or am losing blood in any other way, and I have had three bowel screening tests, which have been negative, showing no trace of blood there. They are convinced there is something wrong there, and want me to have endoscopy, but I have so far refused that. I have no other symptoms, no weight loss, no tummy pains.

I have been trying to find out a bit more myself, and I've discovered there are other factors which may be inhibiting my iron uptake..

I take daily calcium tablets for osteoporosis,

I take daily naproxen for arthritis

I eat a lot of green vegetables e.g. Cabbage, broccoli, sprouts, spinach

I drink strong black tea, no milk or sugar, with or just after each meal and throughout the day.

There are a few researchers who have found each of those items inhibit the uptake of iron, and I think this is the cause of my almost normal levels.

[Gladys23 in reply to SonsyLass]

Hi SonsyLass

Many thanks for your kind reply. Very interesting to hear that you have the same issue. The consultant asked me all the same questions, even if I had become a blood donor. She said to eat all the high iron foods even red meat and have further blood tests in January to see if my ferritin had improved.

I have always eaten a healthy diet but no red meat or red wine. But usually ahve a cup of tea with milk after meals.

I take Blood pressure tablets, Delofine xl, statins, trimbow inhaler and omeprazole. Also laxido and docusate for my ongoing constipation .

She has also mentioned a CT scan and a endoscopy if my ferritin does not increase after eating iron rich foods.

Its very reassuring to Know that you have the same issue, as I started to worry that I may have colon problems.

Thanks again for you very informative reply

[SonsyLass in reply to Gladys23]

Hi Gladys,Yes, we seem to have the same situation!

I also take omeprazole daily, and three different blood pressure pills, and a laxative Lactulose for constipation.

I have questioned the doctors in the hospital haematology department if this combination of so many different medications could be having some effect, but they just dismiss my concerns.

However, I must say I'm relieved not to need venesection, I hate having it done

[Gladys23 in reply to SonsyLass]

Hi SonsyLass

Yes its very strange situation as the consultant did not know why ferritin had dropped so low.

I did read that omeprazole could stop some iron absorption.

Yes I agree glad not to be having any venesection not the nicest of procedures

[Autumn_Leaves in reply to SonsyLass]

Many people have said that PPIs like omeprazole keep their iron levels down.

[isi123]

It is very interesting; in my family, we have hemochromatosis. I have to undergo venesections at least 3 times a year, and my mother, who has the condition, used to have to do it at least twice. Since she turned 71, her ferritin level has been rising very slowly, and she has gone almost 5 years without a venesection. Right now, her ferritin is at 180, with serum iron and saturation levels within the normal range, albeit slightly on the lower side.

[Gladys23 in reply to isi123]

Hi isi.123

Yes my ferritin level was over 3000 ten years ago and had to go twice a week for venesections.

I was told to keep the ferritin below 50. Amazing that your mum has managed to go 5 years with a venesection.

Many thanks for your interesting reply

[isi123 in reply to Gladys23]

One month ago, they quantified the iron in my mother's liver using an MRI, and the result was 18 umol/g, indicating that it is within normal parameters without overload.My doctor monitors me to keep both my ferritin and saturation below 50. However, right now, if I weren't undergoing venesections in less than 6 months, my values would be well above the limit.

[Gladys23 in reply to isi123]

Hello isi123

Yes that is so interesting could be when we get older our ferritin values can drop for no adverse reason.

Yes I have been previously told to keep ferritin below 50. Until this year I have needed a venesection as mine would be above the same as you,