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(16 Posts)
Patsy70 Wed 20-Nov-19 16:47:29

A few months ago, my OH was taken to A&E by paramedics after experiencing symptoms similar to a stroke. Further to various scans it was thought that he'd had a TIA, and has since been prescribed Statins and aspirin. Subsequent blood tests revealed that he has a high red blood cell count and over the past few weeks has had four venesections (a pint of blood is taken) to reduce the blood count. Is anyone familiar with this condition and treatment? He has not been given a diagnosis.

EllanVannin Wed 20-Nov-19 17:26:29

Polycythaemia would be one diagnosis where venesection is required. If the body is making too many red blood cells the blood becomes thick and struggles to circulate as it should so there's always the risk of a heart attack or a stroke. Aspirin and of course statins are given. If the blood problem persists then warfarin is exchanged for aspirin, but not both.

With the right medication and regular checks there's no real need to worry.

Floradora9 Wed 20-Nov-19 17:28:31

My BIL has this condition and had frequent blood taking. He is a very fit 82 year old and does not seem to have suffered any ill effects of the condition. Other members of the family should be tested too .

LadyGracie Wed 20-Nov-19 17:39:50

My son in law has hemochromatosis, a high iron count, which can lead to build up around major organs. He has venesection periodically, twice in the last three months, but had gone about nine months before that.

Doodle Wed 20-Nov-19 20:32:31

Patsy I think EllanVannin has given you a word perfect answer. That’s exactly what your DH has been given and why. They need to reduce the red blood cell count and to make his blood thinner so he doesn’t have another stroke, hence the aspirin too. My DH has polycythaemia too.

blondenana Wed 20-Nov-19 21:40:14

Patsy i have Haemochromatosis, which is an overload of iron. i have venesections, but i am not too badly affected
My twin sons also have it, and one of them has had 2 TIAs, as his blood is very thick and his ferritin very high,he is on a lot of medication, including blood thinners, Thiamin, and a few others,
Both sons were diagnosed at about 18 i think, both are 47 now, but they are both drinkers and it doesn't help, as the ferritin lodges in joints, and other organs ,like the heart and kidneys, anywhere really,just like a bike with rust and they can seize up the same
Your husband may have to have regular venesections, until his iron drops to around 100, mine rises slowly but drops quickly so i only have about 2 in a year,
Haemochromatosis is a genetic condition, if this is what it is, and his siblings will need to be tested also any children
It could of course be something else,but with treatment he will have a normal lifespan
Usually if children have it then both parents must also have it or be carriers .or 1 parent and 1 carrier
It is called HH for short, hereditary haemochromatosis
Strangely people with it are usually only diagnosed by accident,through some other illness, or as your husband by some other problem cropping up, as there is no regular test for it
One of my sons has bad arthritis, the other not so bad but had the mini strokes
Warfarin wasn't given to my sons they take Ckopidogrel,blood thinners

blondenana Wed 20-Nov-19 21:41:45


welbeck Wed 20-Nov-19 22:16:24

my brother has this condition, haemachromatosis, discovered by chance when aged over 60.
he has regular blood-letting to reduce excess red blood cells.
blood thinners have not been suggested, I think that is for a slightly different condition, blood that is too sticky.
anyway, it's good they are on to it, but keep asking questions.
my brother's GP wasn't going to keep sending him for blood-letting, despite still having the condition, I wonder if it was a cost reason.
brother spoke up and said he wanted it and hosp where it's done expected he would continue to need it.
also we were told all the near relatives should be checked.

Patsy70 Thu 21-Nov-19 11:48:08

Thank you for your responses. He is currently taking Clopidogrel (antiplatelet), Antivastatin and Lansoprazole (stomach protector). He has an appointment on Monday to have a bone marrow aspirate and trephine test. The abdominal ultrasound didn't reveal anything sinister, a small cyst on the kidney and a slightly 'fatty' liver. He has a further appointment on 11/12 to discuss an alternative medication to the Clopidogrel, which will require his agreement before being prescribed, apparently. We will ask whether this condition is haemochromatosis or polycythaemia. He has 2 daughters and 2 grandsons, so presumably they will have to be checked if this is genetic. Are there any other questions you think we should raise? Incidentally, he has no ill effects from this and is continuing to play golf once a week, swim twice a week and go to the gym, which was recommended to relieve pains in his knees. He is overweight (always has been) and only occasionally drinks alcohol these days.

blondenana Thu 21-Nov-19 22:08:09

Welbeck the clopidogrel for my son is because he had sticky blood and has had mini strokes
Are you in the UK, if so i can't understand why your brothers Dr wasn't keen on sending him for venesections it could be lifesaving
Have you and other family members been tested, ?

blondenana Thu 21-Nov-19 22:19:07

* Patsy* i hope the relies helped, if it is Hamochromatosis,it should have been seen in his blood tests, but maybe he has only had normal blood tests,he needs one to specifically for HH he should have been
Your brothers Drs should be able to tell immediately if he has it
I have no ill effects from it either,but both my sons have
One son has had an endoscopy today but they say nothing bad was found, just a bacterial thing,H Pylori which needs antiobiotics and lansapazole or Omeprazole together
Hope he gets a diagnosis soon
Fatty liver is quite common by the way,it can be caused by alcohol or sometimes just the food we eat, especially a lot of meat

Patsy70 Mon 09-Dec-19 18:25:58

Thank you blondenana and I'm pleased to hear that nothing bad was found from your son's endoscopy. My OH had a bone marrow biopsy and fluid taken last week with the results due in 2/3 weeks. The Clopidogrel has been replaced by Rivaroxaban. He has an appointment with the consultant on Wednesday.

Patsy70 Wed 11-Dec-19 14:01:11

Just to update you on the outcome of my OH's consultation with the Haematologist. He has been diagnosed with Erythrocytosis and the medical team is meeting next week to discuss and agree the best course of treatment. He is continuing with the venesections, possibly monthly at this stage, and the Rivaroxaban, together with the statins. It would appear that if he hadn't had the TIA earlier this year, this condition wouldn't have been discovered, until maybe he had a stroke or heart attack. The consultant said that this condition is not genetic, although I think it would be wise for OH's daughters/grandsons to have a blood test anyway. He was told that the occasional glass of wine etc. is fine.

Jane10 Wed 11-Dec-19 15:52:41

Well at least you know what's going on. You must have had a worrying time. I hope next week's meeting comes up with a practical treatment plan.

Patsy70 Thu 12-Dec-19 15:12:01

Thank you, Jane.

Doodle Thu 12-Dec-19 15:38:35

Good to hear all is being taken care of. My DH has regular checks where his medication is adjusted according to his test results. Hope all goes well with your DH.