Anaemic?

[lizzziep]

I've been to the clinic today, my platelets were back in the normal range (hurray!) however I am anaemic, (102) and have been for months. I previously had iron tablets (with their wonderful side effects!) for several months which brought the level back up to normal (just) however as soon as I came off them it has gone right back down again, a bit each month. So today I have been put back on iron tablets. I have had the camera up and down to check for any bleeding but that was clear. Does anybody else have this problem? I saw the specialist nurse and she was going to mention it to the doctor and if he wanted to see me they will contact me.

[jointpain]

My wife is on Anagrelide and Hydroxy, and is often anemic, mostly due to these tablets, or at least one of them. Also has been having esophagus bleeds three times since her Portal vein thrombosis last year. A month ago after a bleed she had an iron infusion which worked well, until last Thursday when another bleed put her in hospital, she was operated on, on Saturday after having four bags of red cells. They banded some bleeding varices. She came home today. Though looks so white! Hgb is now 105 and platelets are at 250 even though she has been off the Anagrelide and Hydroxy since Thursday.

The trouble with iron tablets is the black poo side effects, which could be mistaken for a bleed, while the iron infusion does not give that problem. So if she had black poo having had an iron infusion it still indicates a bleed. Collapsing and vomiting blood is also a big give away😋. Shame A&E isn't particularly bothered and still makes you wait 14 hrs while she becomes unconscious.

[lizzziep in reply to jointpain]

Hope she's feeling better. I don't look pale, in fact I always look well - even though I often don't feel it. I try to eat healthy, green veg etc. I have severe arthritis in my knees, I don't know whether that affects it, or the pain killers I take for that.

[Helena303]

I had low iron before I started Hydroxy 1000. But when I was diagnosed with Et last November . My iron was so low. I had been on iron tablets over 4 years. But they had made me have awful side effects. I had constant diarrhoea lost over 2 stone weight. I never felt hungry. I had no energy sometimes slept all day. My Consultant took me straight off of them and I had a iron diffusion. I was scared I’d never had one. But it’s went ok. Then after starting the Hydroxy it went up after a few months. Last appointment it was normal. So that’s a relief for me. Can’t believe it has been so low all that time.

I still worry if they will go down again. No way I ever want to take them red brown tablets. I never know what going on until my next appointment. My platelets were good in January by my appointment in March they went up to over 500 again. So I’ve another appointment soon so who knows what’s happening in my body. It’s a bit worrying but as I’ll be having these check ups for the rest of my life it’s all a mystery to me and probably the Consultant cant tell until blood checks. So I have no control. I’m at there mercy. Just to think of my life before Et. Now I’m being monitored it does make me think differently.

[lizzziep in reply to Helena303]

As my check ups approach I always worry what the results will be. It is daunting when you consider it's going to be for the rest of your life, but better than not knowing and having a stroke! The iron tablets have the opposite effect on me - constipation and weight gain 😔

Best wishes

Lizzie

[Wyebird]

Yes my haemoglobin ranges from 106-103 one of the side affects of hydroxi. It really upsets me to have so little energy. I started tKing chai seeds on my breakfast cereal. However I stopped that as it seems I have a full load of iron and b12 but my body can’t make it. Iron tablets are no good for me because of that. Did your heamo prescribe iron? Has he/she checked your ferritin and b12 levels? . I’ve just dropped 1 hydroxi a week and am taking anagrelide in the hope that my heamoglobin will rise and my platelets will stablize. Early days .

[lizzziep in reply to Wyebird]

The haem had asked for B12 etc but the results weren't back, she said she'd phone me if necessary when they were back. My hg was ok when on hydroxy, it seems to have gone down since being on Anagrelide. I think we must all react differently to the various drugs.

[Wyebird in reply to lizzziep]

Wow! I'm hoping my next appointment will show my heamoglobin is up. Im bril on 10 anagrelide and hydroxi. A week.

However my body couldn’t cope with 14 anagrelide a week. I was very lightheaded.

Heamo. refused to give me iron tablets as blood test shows I have enough. Iron tablets could over dose me on iron.

[lizzziep in reply to Wyebird]

I'm on 28 Anagrelide a week 😔

[Wyebird in reply to lizzziep]

Confusing! I’m on anagrelide because my platelets kept rising when on hydroxi and apparently anagrelide attacks platelets only and nothing else.

It’s too early for me to tell yet but you must be an exception to the rule.

So at the moment I’m on 26 tablets a week. A combination of hydroxi and anagrelide. It used to be 33.

Have you tried magnesium tablets?

[lizzziep in reply to Wyebird]

I like to be different! Hydroxy controlled my platelets but I had a reaction to it and developed non-healing ulcers after 3 years on it. The Anagrelide seems to control my platelets well, I've had a couple of occasions where my platelets have gone back above normal levels but they usually come back down. I haven't tried magnesium yet.

[Cja1956]

I was diagnosed with anemia a couple of months ago and my hemo did not want me to take iron supplements. Everyone is different and I figure he knows best.

[Stephen399b]

I have same problem (ET 10xHU tablets per week) and couldn't tolerate prescribed iron tablets.

My haem suggested Pregaday and they have been much better. Hasn't raise HGB much but in mid 120s which is better. I also take vitamin C tablets which apprewntly helps to fix the iron.

Much amusement though as only male buying Pregaday for 2 years now - but chemist just nods now!

Stephen

[lizzziep in reply to Stephen399b]

I hope you haven't explained to the chemist and just left them to think about why you're buying it! I'll give vitamin c a try to see if it helps.

Lizzie

[Anag]

Hi Lizzie!

Was it just the iron in your blood that went up/down with the tablets or was it also your blood depot (ferritin)? If it was just your blood, could be that the blood test was measuring the tablet you had taken. It’s necessary to stop supplements about 2 days before a blood test to see what your body is really doing. Sometimes it’s a problem with uptake.

If you eat liver once a week (even if you don’t like it) it will probably help your iron an blood count more efficiently than synthetic substitutes worth a try

I am born with Mediterranean anaemia, therefore take Anagrelid, that doesn’t reduce red blood cells. HU does.

I am proud to say, I ate one organicliver steak weekly for 6 weeks and for the first time in my life, my red blood cells were in the range!!!

[lizzziep]

I'm not sure, just keep being told I'm anaemic, hgb is 102.