Posted , 5 users are following.
Has anyone - or their partners had the combination of being treated for Genetic hemochromatosis by venesection and then started with prostate trouble? This is not necessarily linked but any advice of information gladly received. Thanks.
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jwrhn1951 Guest
Posted
I'm a homozygous H63D.
There is a good article out there called something like "H63D the other mutation" that you might check out. It lists a number of other issues the mutation is associated with, would not surprise me that there is a link to prostrate problems based on my experience
I've had an elevated PSA since 2005 when the VA first tested, it has been 10(+/-) 2, interestingly when my Hemoglobin was the highest 18.6 the PSA was nearly the highest at 11.6 right before they did the genetic testing, but at least for me there is no clear correlation as I've also had a PSA of 11.5 and the Hemoglobin was only 15.5.
I have to self catherterize at least 2x a day due to the fact that my bladder does not work, most likely an effect of the iron deposition in the brain according to the docs but may be also due to BPH or PCa (prostate cancer). Did a mpMRI shows a PIRADS 4 lesion.
I think historically the CY mutation killed off those affected fairly young so HD mutation was more or less ignored, and thus the effects "other mutation" became separated but in my view both mutations if one lives long enough will cause a myriad of problems...
sheryl37154 jwrhn1951
Posted
If untreated, and treated too late after the damage is done.
We with C282Y are still around in plentiful numbers (1 in 200) so our ancestors were not killed off by it. In prehistoric and ancient times, people did not live as long as they do now. Although those with haemochromatosis were able to survive big blood losses acquired through all the battles they fought, which made them a stronger tribe. Think the Vikings (Scandinavians) and the real Celts who ended up in France, the C282Y was more prevalent in those people.
H63D is more prevalent in Ireland with 1 in 80 having it, and in the rest of the world where a bigger mix of DNA has been introduced, it is 1 in 100.
jwrhn1951 Guest
Posted
I'm a homozygous H63D.
There is a good article out there called something like "H63D the other mutation" that you might check out. It lists a number of other issues the mutation is associated with, would not surprise me that there is a link to prostrate problems based on my experience
I've had an elevated PSA since 2005 when the VA first tested, it has been 10(+/-) 2, interestingly when my Hemoglobin was the highest 18.6 the PSA was nearly the highest at 11.6 right before they did the genetic testing, but at least for me there is no clear correlation as I've also had a PSA of 11.5 and the Hemoglobin was only 15.5.
I have to self catherterize at least 2x a day due to the fact that my bladder does not work, most likely an effect of the iron deposition in the brain according to the docs but may be also due to BPH or PCa (prostate cancer). Did a mpMRI shows a PIRADS 4 lesion.
I think historically the CY mutation killed off those affected fairly young so HD mutation was more or less ignored, and thus the effects "other mutation" became separated but in my view both mutations if one lives long enough will cause a myriad of problems...
tom_70042 Guest
Posted
hello all again
had a blood test today Ferretin down to just 112 after two vs it was 113 last time
i was devastated as the nurses thought that with the two vs i should be around the 50 mark so back again on vs next week
only difference is maybe i had the off very small glass of red as i seemed to be doing so well
And my first pint of beer in a month last Monday
I am wondering if this skewed the tests
sheryl you might know or have a view the result hit me hard but maybe I am being overtly concerned over reacting but it was a huge disappointment today before christmas
sheryl37154 tom_70042
Posted
Hi Tom, don't despair - this happens. It is all due to our metabolism doing its usual changes. It doesn't go according to text books. Even when you get to <50, it could suddenly go up again. The nurses or even a haemotologist cannot predict nor should they make promises.
I don't think your couple of small reds, and a beer are a problem unless you have a problem liver. But if you did have a problem liver, your ferritin levels would be difficult to get down. Besides, red wine contains polyphenols and tannins which help reduce the uptake of iron. Just keep to the one small with food (particularly with a steak or other red meat!). Sometimes, with company, I have two not so small ones. But my ferritin is down into the 20s now and I still have vx every 3 months. When you get to a certain level (like mine), it does not go much lower and even sometimes rises.
As I have mentioned before, you might have had some infection, inflammation, etc (even a cold) at the time of the blood test.
If you are homozygous C282Y, you are up for vx for the rest of your life, so you need to make friends with it.
I am aways positive about vx because I want to get this toxin out of me. (I wanted to use much stronger words there!) A 9 year late diagnosis caused me severe problems - perhaps this is why I am always keen to have vx, although my veins are not - they have been objecting for a long while.
You never know, but maybe next blood test it could be 43 or thereabouts.
Let us know how you go next blood test.
tom_70042 Guest
Posted
thanks Sheryl
i feel lots better now having heard from you, and i love your humour as to the odd glass of red and the way you embrace vx
i dont actually mind the procedure now in a way too i look forward to it but i guess i was hoping for a lower result and time off for xmas ,
I will of course keep you posted i think you and hubby are in australia have lots of the irish cousins there and used to travel there lots on business
its funny how this hit me since i retired as we wanted to travel lots more for pleasure than business but the body aches and pains make that tricky
oh and yes i am on vx for life luckily good veins
have a great christmas
best Tom
sheryl37154 tom_70042
Posted
We have travelled to France (and Italy/Switzerland) (from Australia) for the last 3 years and we don't do it the easy way - but the most economical way.
In Italy I wish I had remembered I had packed some Endone as the pain of walking up steep cobblestone streets was extreme. I got left behind as my husband (also a Tom) walked ahead with a 70 year old chick. A 71 year old woman with a walking stick caught up with me and kept me company.
We hire a self-operated canal cabin cruiser (complete with accommodation and kitchen) in France for a couple of weeks, so a bit of agility is required or strong arms to haul one self up onto the decks and throw ropes over the bollards in the locks (that was my job while Tom did the Captain thing). This year, with the help of an Endone, we walked from the Loire Canal up, up, up 3.5 kms to Sancerre. I had to be pushed the last 100 metres. We collapsed onto a bench seat while an 'elderly' man who was behind us shuffling at a steady pace kept walking passed us without resting.
We are 67 and 71 years, and I had to give up work at 53 years because of the severe symptoms of HH, and although I did not really want to, it was such a relief being able to slow down. Although this was at the time my husband got Hodgkin's Lymphoma so my time and whatever energy I had was given over to looking after him. He never returned to work again either.
So don't write yourself off, you can do it if you really want to. I can walk a lot more in France then I can in Australia, for some reason. 😃
tom_70042 Guest
Posted
fabulous you ate truly inspirational Sheryl
my big aim is to be in Japan for the RWC to follow Ireland meet my Aussie cousins and mates from South Africa
i know i must keep moving and i will
lovely to hear about your boat trip oddly some friends of ours from Sydney do something similar every other year in France and we meet in Paris or London
Have a great Christmas pass on my best to hubby Tom
this end we are me 68 and anne marie 65
43 years together so must be doing something right