I had bloods done, and pharmacist phoned and said I should visit GP as haemaglobin was low. I was diagnosed 18 months ago with ET, Jak 2. Does anyone know what would cause this.
I have heart problems now and now taking Bisoprolol and Tramadril and I’m feeling quite depressed as there no one I can discuss my issues. There is no specialist nurse.
I take six Hydroxycarbamide pills weekly.
Any advice would be appreciated.
Thanks to all members for support and help.
Happy Christmas to everyone, sending love and hugs xx
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Hannah2308
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hi Hannah I have just had my bloods done and my haemoglobin is just under normal range. I have et jak2 and take hydroxy 1000mg for 5 days and 500mg for 2. My nurse said she was happy to leave it until the next bloods, which is March, to see if it settles. As far as I know it is low iron, although I eat a lot of green veg and a healthy diet I think the hydroxy stops the iron being absorbed. I am in N.Ireland. Could your GP help you with advice? It is important to get the proper advice with regards to all your meds. Hope you get the help you need stay well and have a lovely Christmas.
Thank you Pauline, I’m going to GP tomorrow. My surgery closed and I’ve been moved to a new practice, I’m a bit apprehensive as I was at old practice all my life. I’ll let you know how I get on x
Roxy, green vegetables can have lots of iron but it's not the type of iron that absorbs well. For iron absorption you need to eat red meat or dark meat of turkey (not turkey breast or chicken). By the way, in order to equal one iron tablet you'd have to consume 10 steaks. I was told not to take iron tablets but not to worry about red meat.
I’m just picking up on your quote ‘I take six hydroxycarbomide pills nightly’. I’m hoping that’s a mistake and you mean weekly?
Good that you’re going to the GP in the morning. Let us know how you get on.
Such a shame that you don’t have a CNS within your haematology department. However, in that case you should be able to discuss any issues that arise with the haematologist.
Low HGB can have a number of causes. In the context of having a MPN, this is an issue that needs to be reviewed with your hematologist. While hydroxycarbamide can cause hemolytic anemia, that does not sound like what you are describing. The anemia could be the result of iron deficiency, which needs investigation. Your GP can help sort out what is going on. but best to consult with your MPN care team.
Thank you Hunter, I’m feeling worried as when I’ve got any health issues I wonder if it is the ET, the medicine, or something else not connected.i don’t have any support, and I’m trying to arrange an appointment with MPN Specialust. Thanks again and best wishes for Christmas and 2024.
hi you don’t say what your haemoglobin is. It could be low enough to make you feel low mood. You are on a low dose of Hydroxicarbomide but it affects everyone differently so it could be the cause.
If your pharmacist says see the GP I would follow his advise.
Thank you Wyebird, the pharmacist didn’t say what haemaglobin was, just said low. I don’t get any written info about bloods. There is no specialist nurse or MPN specialist available. I don’t feel very good this morning, don’t know if I’m just worried about what is happening, and the unknown. Thank you for replying, I’ll let you know how I get on . Happy holidays .
It could be a mixture of everything. I’ve been there! Luckily enough I’ve a Bril specialist nurse. Honestly before diagnosed I bought my own iron supplements because I felt lousey. See your GP and explain everything. Just knowing your bloods help you understand how you feel. I keep a copy of all of them. Are you in the UK?
First and foremost I would say - do not panic! I have ET for 13 years now (and a few other conditions such as Atrial Fibrillation, Coeliac, and Pancreatic insufficiency - all requiring accommodation - but under control).
So I also take Hydroxycarbamide (500 per day + extra on two days) and this means I have numerous side effects including fewer and enlarged Haemaglobin and all the indications of Macrocytic Anemia - indeed all of my regular blood count analyses show every level is outside the 'normal range'. My Haematologist says "That's fine! Nothing to worry about" "Completely normal on this medication! Keep taking the capsules, giving the blood samples, and we will see you again in due course"
So, - keep talking to your contacts, if still concerned ask about B12 & Folate levels (I supplement with both just to be on the safe side)
As I always point out - it could be worse .... I might not have woken up this morning!!!!
Thank you quangletangle, you have made me feel a bit better, I don’t know what I’d be like if I didn’t have the support of this forum. I’m usually a ‘think positive’ person, but pharmacist telling me that made me very worried. I’ll post how I get on a docs and hospital. Thanks again, happy holidays x
Hannah is there anyway you can get hold of your CBC reports? I think it is important that we know and can follow the results. I rely on mine to see how I’m getting along, so when I see my platelets have gone down it’s very positive. If it’s the opposite I ask questions.
Thank you Shoichet, I asked the pharmacist what the reading was and she said it was 113. I’m going to ask if I can get a copy of all my blood results in future as I need to get more knowledgeable . Hope you stay well and have a lovely holiday.
You have a right to access your medical record at request. There is no saying "no." You can definitely request not only the current but also the past blood test results. Every electronic medical record I have ever seen can print a historic view, showing many results on a single page. Here is a sample from my own records.
Morning to you. All this news combined with feeling poorly will have thrown you into a bit of a panic. This group is AMAZING for getting you through those middle of the night moments so keep in touch. I know this having been there myself. Hunter is right as always; try to get hold of the numbers and inform yourself about what they are saying. Then try to get refered to someone who knows what they are talking about and has heard of our condition. However, starting now start to look after yourself and get family/ friends/anyone to support and do the Christmas dinner until you feel a bit more like it. Take care and stay in touch.
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