What is Hemochromatosis
Haemochromatosis, also spelled hemochromatosis, is a hereditary disease characterized by improper processing by the body of dietary iron which causes iron to accumulate in a number...
Join Now
|
Hemo and Me
|
Watch this |
| View More Posts Ignore |
Hi guys, just wanted to say hello - have finally joined after lurking for a while.
I was diagnosed with hemo about a year ago, but went undiagnosed for years, as I underwent all sorts of tests for severe arthritic pain until the docs gave up and prescribed me Tramadol and sent me away. It began to manifest when my periods stopped at age 45 due to chemo treatment for breast cancer and was spotted, quite by chance, during tests for Other Things, by a student at the hospital! My ferritin started at +900 and I went through the fist de-ironing process but despite the fact that I have no fear of needles (just as well, given the chemo!), my veins are very thin and deep and my body doesn't like being leeched, so if I don;t pass out or throw up (or both) during phlebo, my veins run away and hide, so often only a small amount of blood can be drawn despite their best efforts. For the first year I saw a different 'specialist' every few months (strgange system, they are mostly final year students who move from hospital to hospital) until I eventually insisted on a regular doc. However (and I've only seen him once thus far) I'm not sure he knows much about the illness (he's an internist) and am pretty sure I know more than he does, My ferritin was down to 17 (and I felt (slightly) less ill) but he now insists that is too low and refuses to give me a bleed for 4 months. Imo this is way too long, I have another 4 weeks to go and I feel wretched. He also was pretty dismissive when I told him the symptoms come back. I feel dreadful, chronically tired (no matter how long I sleep), abdominal pain, heart palps (every night, sometimes for hours, beta blockers don't work), nausea, severe abdominal bloating (and I hardly eat), breathlessness, severe pain in every joint, from head to toe, and on top of all that I am becoming severely depressed. I also have a peptic ulcer and have just managed to 'cure' (read kill) an HPylori infection (although stomach lining is still very inflamed) with herbal remedies after the antibiotics they gave me almost did for me (I had to stop taking after 2 days)! Anyway, all in all I'm feeling pretty miserable (as you may have gathered :-)) but am trying to keep a still upper lip as I have a 20 year old student living at home who does his best, bless him (shops, cleans, etc), but who also needs a life and not a constantly whinging mother :-) Apologies for having waffled on so, but I've never spoken to any fellow-sufferers before, just read up the (scientific etc) facts, so I suppose I want some tea and sympathy :-) Posted on 11/05/09, 10:11 am |
| 13 Replies | Most Recent | Add Your Reply |
| View More Posts Ignore |
Well you have my sympathy. I guess I was lucky because I have never had half of all that you are suffering through. The only problems I experienced was depression and lack of appetite. My ex-wife noticed the change and had me go to an internist who was knowledgeable about the disease. The excess iron was settling in my liver and creating cirrhosis which is what my father died of so I do believe he was the one who gave me this.
As far as the tea hope you keep drinking it. My grandmother was an herbalist and believed strongly in the powers of teas. I can still hear her saying " tea has tanic acid and that is what they use to tan deer hides so if it can do this it can get rid of anything that ails ya." Good luck in your treatment and the only suggestion I would offer you to ponder on and consider is going to a hematologist or an oncologist as they are usually way more knowledgeable about Hemochromatosis. 
|
|
|
|
||
| View More Posts Ignore |
Thanks very much for your reply and advice, Santa. Both your parents must have had the faulty gene for you to have inherited the illness.
I have an appt with the internist on the 16th and will ask him to refer me to a hematologist I think. The expression 'tea and sympathy' is a Brit one - you know how we like our cuppas - cures all ills, it seems!
|
|
|
|
||
| View More Posts Ignore |
Hi Andrea,
So sorry to hear about your situation. I'd dump the internest and find a good hematologist or or gastro specialist. They seem to be better informed about the disorder. Stay with the teas. Wish your phlebs were easier since they are so vital in improving your health. I don't think there is any way to know now, how you will do in the future. Many people experience better overall health and diminishing arthritis. Four years after my aggressive phlebs, my arthritis worsened. I've had my hips replaced, I'm a candidate some time for a left knee replacement and the ortho guy wanted to fuse my ankles. No thanks! I guess a lot of damage had been done before the iron was removed. I have good days and not so good days. As I've mentioned before on the site, I found, after 9 years of excruciating ankle pain and three rheumatologists later, that I have pseudo gout, which seems to accompany HH. He started me on colchicine, one of the oldest meds on record, and it has vastly improved my ablility to walk. I don't pretend to know whether it would help, but mention it because it was so helpful for me and missed for so long. Best of luck and keep the ferritin low.
|
|
|
|
||
| View More Posts Ignore |
Hi tuistone, thanks so much for your 'tea and sympathy'.
I'm not sure where you are, possibly in the US? Anyway, I'm not sure either, how the health service works there (I;m in the Netherlands), but it's not really possible to 'dump' the internist (it's not private care) - there are whole processes to go through and sometimes it can be quite a fight - and of course when you're as tired and painful and depressed as Hemo can make you, it's all a dreadful effort. I have now insisted on an appointment on 1th Nov, as he didn't want to 'see' me (and then only phone contact!) until next Feb, with just one phlebo in-between! My last phlebo would then have been after 4 months - wayyyy too long, I feel awful already. I am preparing a document to print out and give to him, as I don't think he's too well-versed in the illness and, as I mentioned, didn't seem to believe me when I told him my symptoms came back the longer I went without a phlebo - and as the phlebos don't go too well either, it's not as if I look forward to them! I must look up the colchicine - I've tried glucosamine for the joint pains, but it doesn't seem to work (been using for more than 6 months now) but think I will stop as it contains ground shellfish shells and, as you probably know, people with Hemo must not come into contact with raw shellfish at all, even to the extent of wearing shoes whilst walking on the beach. Mind you, it's a long time since I walked on a beach...:-)
|
|
|
|
||
| View More Posts Ignore |
Andrea,
Sorry for the delay in getting back to you. I've been involved in hell this past week, with a hard drive crash and a corrupted back up drive. Anyway, that's another story. I'm sorry, also, to hear about your predicament with your internist. It is not unusual. Many MDs seem reluctant to remove blood, and err on the side of too much caution. Learning as much as you can about the disorder and then being your own advocate is about the best you can do. Are there blood banks in the Netherlands that would occasionally take your blood? There is nothing from the iron disorder that you could transmit to someone else, and your blood is probably loaded with young red blood cells. I live half way around the world in Hawaii. I'm on the U.S. Medicare system which so far has been wonderful in my experience. I hope that with impending new legislation in the U.S. that they don't mess with it too much, but I won't hold my breath. Hope the colchicine works. Not enough folks know about it. It does have a limited use, but it seems many of us with HH also suffer from pseudo gout. Fifteen years into maintenance and fatigue, my low energy and arthritis complaints still rule my day. I have tried everything from nutritionals, siberian ginseng, rhodiola and small doses of ritalin to try and get back to normal on the energy meter. I sometimes marvel at "normal" folks around me who can nonchalantly plow through the day without naps. I feel narcoleptic at times. This site has been a great assist to me, because I don't feel as solitary in my experiences. For what the professionals profess, it is academic to them. Those of us burdened with high amounts of iron loading, seem to experience similar symtoms. Reading others experiences have helped me to feel less alone. I have loving family and friends, but unless you've experienced the daily struggle with pain management,fatigue, etc. it isn't quite the same. Keep the feritin low and have some fun today. Aloha, tuistone
|
|
|
|
||
| View More Posts Ignore |
That's ok, Tuistone, I don;t expect an instant reply - I;m just grateful anyone's listening at all!
The only bloodbanks here, as far as I know, are in the hospitals. Besides, before accepting me they'd check out my records and I'd be rumbled! In any case they throw HH blood away, or at least they do mine, probably because of other meds I'm using and it would be too pricey and/or complicated to clean. I'm compiling a WORD document to give to the 'specialist' when I see him Monday 16th, containing a lot of info not only about me and my symptoms, but about HH in general, and have included links to various HH sites - I can only jope he decides to do some research. I truly, truly sympathise re your joint pains and chronic fatigue. These are the two things which are the worst for me, and I now walk with a stick. And it's so difficult to fight for proper care when you're completely exhausted most of the time and all you feel like doing is crawling into bed...I'll do some more research into herbal remedies to combat fatigue and let you know if I can come up with anything. Thanks for listening, anyway, I'm very grateful and will keep you informed re the doc if you like! Say hello to some mountains for me... Andrea At least in Hawaii you (hopefully) have lovely views to look at!
|
|
|
|
||
| View More Posts Ignore |
Andrea,
Best of luck in maneuvering through the medical maze. When I first found out I had HH I,mistakenly, thought that my MD would get excited about treating something 'outside the box' of his normal schedule. I couldn't have been more mistaken. Aside from being a journey in self discovery, these past 15 years have been a practice in dealing with my frustration at the medical industry. Botched surgery. Mersa hospital infections. Missed diagnosis etc. Here in the states, they are very well compensated, regardless, it seems, of the quality of their work. I usually don't mention this beyond the ears of friends but there it is. I was hoping for some improvement in the overhall of our system, but I now have grave doubts. Jaded. Am I becoming cynical, oh no. Maui is da best! Winter is fast approaching and the days are now in the low 80s and high 70s. Getting a chill in the air. I have Haleakala outside my window and the sun has just peaked over. Best of luck. Keep pushing them to where you want them. Tuistone
|
|
|
|
||
| View More Posts Ignore |
Thanks again Tui - you'd think they would wouldn't you? I thought that's what medical bods did!
I have a friend on Maui, a Viet-vet, although we've lost touch now, he's something of a recluse. It sounds wonderful though! Best I can do is the Belgian Ardennes for a few days next week :-) Specialist later today - will let you know. Chin up! Andrea
|
|
|
|
||
| View More Posts Ignore |
Hello Again Andrea (on a new thread)...
I'm a tea lover too BTW. I used to have trouble with throwing up and/or passing out too (and also have no fear of needles). Isn't it odd how it happens all of a sudden? I'd have no warning. After 15 years of phlebotomies, I've figured a few things out that help my body. If I'm horizontal while having the phlebotomies, it really helps (or at least in a chair with my feet up). I also started getting IV fluids with the phlebotomies a couple years ago. I used to get blood out of one arm and fluids in the other. Now I have a port and I get the phlebotomy and then get fluids through the port afterwards (my veins no longer cooperate). Have you tried either of those? Might help you too...
|
|
|
|
||
| View More Posts Ignore |
Thanks Butterfly - I;m not entirely sure what a port is - is it the same as a shunt? Anyway, I'll try your suggestions, thanks very much!
Andrea
|
|
|
|
||
| First | Previous | Page: 1 2 | Next | Most Recent | Add Your Reply |
