Possible newbie

[Chris1980]

Well my ferritin has fallen again which is good. 1464 to 1040 to 861 so some nice drops there. Did not handle the venesection too well, started feeling really sick, blood pressure went down real quick and started sweating something shocking. Hopefully the next one will be a bit more peaceful!

My ast and alt levels are still up which is worrying me but hopefully they will drop down soon.

[Chris1980]

Woohoo, all ct results normal!!

Going to get my blood rechecked today just to see what the levels are doing, cause without the stress I reckon I would feel great!

[steveF]

Chris... bad luck, but it's great that you now know.

I know I am a fan of the gastro, but do yourself a favour...  LEARN AS MUCH AS YOU CAN about it.

GPs rarely know much... your gastro will know lots, but probably not tell you.  I have had to plan and ask as many 'inteligent' questions as I can.  I get looked at like an idiot some times like he's thinking "who's the doctor?".  If you read my thread on self management you will see it has been a good thing for me.  Marg Rankin from the Haemo Society pushed me to learn and manage... its the best thing I did.

Remember... the gastro will probably give pathology referals...  I think blood bank is friendlier and better experience (and the blood is useful).  They won't test blood though, so any tests will mean a seperate visit to pathology.

Have you joined the society?  There is a newsletter and its as good a source of info as I have found.  

Learn and manage it... you will almost certainly be fine.

Steve F

[Chris1980]

Well I went and got my results tonight and yes I have Hemo.

I tested hetero for C282Y and H63D.

My doctor performed an immediate vennesection and has referred me to a gastro as well as for a ct scan of my liver.

On a good note my ferritin level has fallen from 1464 to 1040. My gamma gt, ALT and AST are all up but like the ferritin have all reduced and two are almost within normal range. I guess more to come soon.

[MatthewK]

Chris

My symptom was arthritis of my hands which had become much more severe in the previous 12 to 18 months and my SF at diagnosis was about 1250.  It dropped pretty quickly to about half within 8 months on venesections every 2 weeks, but with no venesections for about 6 weeks in that time while I was overseas.  After that it was bit up and down taking another 18 months to come down to about 100 although i extended to monthly venesections once I got to 300. 
Like you I read up a fair bit on the internet and the association booklet.  I did stop eating cereals and minimised orange juice especially around mealtimes but didn't make a lot of other changes to my diet.  Was probably a bit more careful with alcohol intake especially until cleared of any liver damage but that hadn't been excessive anyway.  My specialist indicated that he didn't think diet was a major issue for me once I started the venesections. 
I have mentioned elsewhere that in hindsight I probably was a bit fatigued prior to diagnosis but that wasn't what I went to GP about. 
Hope that info helps
regards
Matthew
 

[Chris1980]

Hi guys,

Thanks for your responses. I called the bloodbank on Saturday and they said given what is going on that I will need to wait before coming in to either give a donation or to start the de-ironing process. Time will tell.

Have found a lot of information on the Internet, maybe too much. Have stopped all alcohol intake and have tried as best as possible to eliminate food that is high in iron. I have also read that calcium and black / green tea helps to lower iron absorption so am giving that a try.

Matt what were your symptom
S thy led to the diagnosis and did it take you a long time to lower your iron level?

[MatthewK]

Hi Chris

It might pay to check with the Bloodbank before booking in.  My understanding is that that they won't take blood as a normal donor while you are still having tests done because they won't know if blood is ok for them and if you are confirmed as a therapeutic donor they will need a doctor to confirm frequency of donations before they start. 
From memory I had to stop my 3 monthly normal donations when my GP gave me a potential diagnosis until I'd had the gene test and seen a specialist to clear me of other damage. 
As you might have noticed from other messages the blood donations can also be a bit tiring if at high frequency which was why my specialist put me on 2 weekly venesections instead of weekly with a count just a bit lower than yours. 

cheers
Matthew

[steveF]

Chris

Your take on this is pretty right.  It is what it is, and at your age the chances of organ damage are slim.  I am impressed that your GP seems to have nailed it that fast.

Next step will probably be a gastroenterologist to give the liver & panceas the once over.  Your GP will sort that for you I'd have thought.

Wait for the confirmation with the gene test.  It still could be something else.

As for the blood bank... never hurts.  For the record, the GP might send you to pathology for venesection... Blood bank is a better & friendlier option, they just wont do analysis of blood.  You need a seperate pathology test regularly to sort that.  When you get that far you can get the referal forms from this link.

http://www.manual.transfusion.com.au/Transfusion-Clinical-Practice/Therapeutic-Venesection.aspx

Good luck and keep in touch.  You will need lots of thought clarification on this subject if you are affected.  You will need to understand and manage it yourself, don't leave your trust in the medicos.

StaveF

[Chris1980]

Hi all,

Well I might be joining the Haemochromotosis group. Will know by next week.

It seems it has all happened very sudden. I am a 29 year old male in fairly good health and just felt run down for a couple of weeks. Thought what the hell I will go to the doctor who ordered a whole batch of blood tests. Went back to get the results and everything was good bar my iron level which was at 1464 ug/l.

He immediately said this "H" word that I had never heard of which got me massively flustered and prompted me to do some research which has led me here. He ordered another blood test to check my ferritin level again and also to look for the HFE gene or whatever it is.

Reading through the various posts on the forum on the one hand I am hoping that it is Haemo..... as there seems to be a light at the end of the tunnel, on the other hand I am also hoping it could just be acute hepatitis. I guess I will know more next week.

Am still a little unsettled with the whole thing but also happy that it is being checked as it seems this is something that can go undiagnosed for quite some time.

Funny thing was that when I had my first lot of blood tests, which was something like 5 or 6 viles, I actually felt really good afterwards and it seemed to pick me up. That being said I am wondering whether I should go down to the bloodbank today and make a donation, cant help but lower the iron?

On a final point, as I am in Brisbane, should this come back as Haemo.... can anyone recommend who I should see, specialist wise as the next step?

Chris