Posted , 9 users are following.
In the past 2 months i had started on hydroxy 2 x 500mg and the last visit to the clinic i was started on iron as well....i asked if i was anaemic i was told NO but i was low on iron, so im a bit confused.
?Is there anyone else on hydroxy and iron?
0 likes, 14 replies
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Orseblue richard88690
Posted
Sorry, I'm still to go on the hydroxyurea.
Do you feel ok from taking them?
I'm a bit nervous about how the body will react to them, I understand we are different.
Please excuse me to chuck a question to your question.
richard88690 Orseblue
Posted
Some of the PV sysmtoms have improved especially the numb feet.
I have lost my appetite and trips to the toilet have increased, mainly because of the increase in fluids, i am trying to drink at least 5 pints of water a day.
Unfortunately I dont think i have a choice about taking hydroxy!!
Hope that helps
Richard
Scotslassie richard88690
Posted
My gp put me on iron and nearly killed me.
My haematologist went mad and said that my iron is supposed to be low and that I must never take iron tablets again.
richard88690 Scotslassie
Posted
1958_pele richard88690
Posted
richard88690 1958_pele
Posted
Thanks for replying....take care
Richard
keith28441 richard88690
Posted
In Primary Polycythaemia, the ferritin levels are typically low due to constant overproduction of red blood cells, thus causing increased demand for iron. In contrast the ferritin levels are “usually” normal in Secondary Polycythaemia. My Haematologist is suggesting I commence on Hydroxyurea but I am currently on a venesection programme only and take other medication for my platelets, which are also high. I have Polycythaemia Rubra Vera, (Primary) and my ferritin levels are very low. Although I am no Doctor, the venesection/phlebotomy also plays its part in reducing the amount of iron in the body so this is also a factor but as mentioned, the overproduction of your red blood cells also impacts on your iron levels too. Iron supplements I understand are a big no no. Unfortunately, most GP’s have little understanding of Polycythaemia, at least mine had the good sense to admit that and referred me straightaway to a Haematologist. Low iron levels though is not uncommon in Primary Polycythaemia.
Hope this helps and all the very best to you.
Keith
richard88690 keith28441
Posted
Many thanks for your thoughts. I have PV Primary with an increased platelet count which last visit to the clinic was 484 (apparently not too high).
It is the haematologist who has put me on iron supplement because of low iron, so you see why im a little confused.
I am back at the clinic in 10 days so I need to get some clarification.
All the best to you too
Richard
Scotslassie keith28441
Posted
I havent had to have any since then and it is over 2 years now.
andrew45678 richard88690
Posted
I'm not on hydroxy but do have phlebotomies about every two months. My iron (ferritin) is low, around 10, and this is the way my haematologist wants it. She has been adamant about no iron supplements, as the iron just allows the body to produce more red blood cells. And this is certainly what I have read many places. So it would be worth enquiring what your doctor's reasons are for suggesting an iron supplement. There are some negative effects of having low iron, but the idea is to try to keep the red blood cells closer to normal.
keith28441 richard88690
Posted
Further to my earlier response, I was looking at the blood journal website a little while ago and there was a paper written by a Haematologist. In it he makes mention of the following:
“Overusing phlebotomy, iron deficiency might be induced resulting in abnormal RBC morphology and eventually reactive thrombocytosis. In these cases, I generally do not supplement with iron, with the exception of very few patients with symptomatic iron deficiency who I treat with no more than 5 to 10 days of iron. I do not consider secondary iron deficiency as a reason for starting hydroxyurea (HU).”
So perhaps there are occasions when there is a need for iron supplements. I have reactive thrombocytosis as a result of my high platelet levels but as per the Haematologist writing in the blood journal, mine hasn’t prescribed me any iron supplements.
I am sure your Haematologist will be able to give you the answers you are looking for when you see him or her next but Polycythaemia being a complex condition, not all answers are necessarily that straightforward.
Hope this helps
Keith
clem19079 richard88690
Posted
It confuses me too. I am low on iron and my heamotoligist tells me not even to eat meat nor any product that contains iron. Itching to take a iron vitamin but can't .
Scotslassie clem19079
Posted
He made me message my Haematologist to find out why and when I told him that the gp had put me on iron he went ballistic and called him to rip him to shreds.
I started feeling better as soon as I stopped the pills
Scotslassie richard88690
Posted
I became very ill quickly...I called my haematologist after this went on for a couple of weeks and he went ballistic saying that I must never take iron again.
He deliberately keeps my iron low to control the pvr.
As soon as I stopped taking the iron I became well again.
I would check with your specialist 1st.
I always ask him by email now whenever I get prescribed any meds, just to be on the safe side.