Hemochromatosis Support Group

Hemochromatosis is a hereditary disease characterized by improper processing by the body of dietary iron which causes iron to accumulate in a number of body tissues, eventually causing organ dysfunction. It is the main iron overload disorder. Hemochromatosis is notorious for having symptoms that are often initially misattributed to other diseases.

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deleted_user 08/15/2011

Hi All

I have just been diagnoised with Hemochromatosis.

I am 26 years old (female). My level was 368.

I had my first blood letting a month after diagnoises and my level was 327 at time of draining.

Even though my levels arn't really that high, I am having very extreme symptoms.

I am ALWAYS tired. Very often I will sleep 10 - 14 hours but have been known to sleep 20hours straight.

I also drink 4-6 liters of water a day (and pee every bit of it out too LOL). Generally after 12 midday my pee is clear as water and you wouldn't even know I'd peed in the toilet bowl.

I am very frustrated! My GP has no real idea what to do with me and can't really give me a firm answer as to if I should go for another blood letting. Aparently something is pretty low (12.4) and should be above 13 before any more blood is lost.

I don't see the specialist until the 24th of this month.

The fatigue is really affecting my work and home life. My boss has suggested I go part time and my other half is having trouble accepting I am ill and not just being lazy.

He finds it hard to look at me and believe I am too exhausted to walk the dogs or clean. He sees me with enough energy to watch tv or play games on my lap top so I should be able to do other stuff. He doesn't understand I am conserving my energy to ensure I can go to work the next day.

When my brother was found to have it also (before me) his level was over 1600. He was tired but did not suffer the fatigue that I do or the excessive thirst.

I just feel really alone with all this. I don't know what to do with my work situation or my OH...

He really is a supportive guy, just I have been 'lazy' for so long (over a year) that it's hard for him to belive I'm not using this as a get out of jail free card....

HELP!!

deleted_user 08/15/2011

Welcome msimp,

In addition to this great support group of 'proof', here are a few websites that might help your husband understand our situation. Good Luck!!

http://www.youtube.com/watch?v=jn5IBsm49Rk

watch the video before sharing it with him. It was presented at Lupus conference but applies to us, too.

http://www.invisibledisabilities.org/what-is-an-invisible-disability/

http://www.cdc.gov/ncbddd/hemochromatosis/facts.html

http://www.ygyh.org/hc/have08.htm

http://www.youtube.com/watch?v=jn5IBsm49Rk

watch the video before sharing it with him. It was presented at Lupus conference but applies to us, too.

zzzzzz

NicolaToms 08/15/2011

Hello msimp, so sorry you are feeling so poorly. Im afraid a lot of us on this site have the same symptoms so you are not alone.I should imagine the 12.4 level is your haemoglobin level in your blood.I too get a low level after phlebbing and have to put them on hold until the level rises again. Its nothing to worry about just means it might take a bit longer to get your ferritin level down. As to your extreme thirst I would ask your Doctor to test you for diabetes as hemochromotosis can cause this. Nic. X

deleted_user 08/15/2011

I agree with Nicola Toms, get tested for diabetes. H.H. can cause diabetes. My husband does not have H.H., but he is a diabetic. When he was diagnosed, he was exhausted and could not quench his thirst. He couldn't stop peeing either. The body's thirst and consequential urination is it's way to flush the excess glucose from the body.

My husband feels the same way your's does...I'm lazy. I've been de-ironed, I still feel beyond exhausted and the docs say that there is nothing else wrong with me and that I may never feel better no matter what due to the H.H. Since there are no medical reasons for my fatigue, my husband is frustrated that I am not full of energy, working and dealing with our household and 4 kids. I think his frustation is a result of his not being able to deal with and not wanting to deal with our life situation either. People tend to blame other's for their deficiencies.

Hold your head up and perservere. You are not alone!

NicolaToms 08/15/2011

Zas4, I had same type of hubby as you. I was working full time, had a daughter with a liver disease and another with depression ( not easy) to deal with when she wanted to be dead all the time. My husband was very unsympathetic when his normal full of fun wife became a shell of her former self. In the end I could take no more. My divorce should finalise this week. Look after yourself and you msimp. X

deleted_user 08/15/2011

Zas4, get your thyroid checked. Hashimoto's Thyroiditis can be caused by HH and chronic exhaustion is a symptom - I have it and it's extremely debilitating

deleted_user 08/15/2011

Thanks for all the replies!

I have been tested several times for diabete's (blood and urine) and am told I do not have it.

My thyroid has also been checked and aparently normal.

I see the specialist Wednesday week, and am bringing my OH with me (yay!).

I am glad others are in the same boat... Not happy for you guys or anything... Just makes me feel less alone :)

My biggest concern is the fact we are saving for a house and in a year or two I want to have kids.

How am I meant to save for a house if I have to start working part time? And how am I going to raise a kid from the couch/bed?

I feel like I am not looking like a good future for my OH and he might start to rethink our future plans together (get married etc).

A month ago I didn't realise how life changing this would be. It's just hitting me now :(

NicolaToms 08/16/2011

Hopefully you will feel better when you are de ironed. Get your other half to read other topics on this site to try and put your point across how poorly you can feel with this disease. Marriage is meant to be "in sickness and in health" and its not your fault you are feeling so bad. We are all with you. X

deleted_user 08/16/2011

Along with a couple of other people I am concerned that you might have diabetes. HH causes a special type that seems to be the worst of both worlds because it has features of both Type I and Type II. I wish I had been diagnosed earlier because it would have given me better control and kept some symptoms away. On the positive side, if you are diagnosed with diabetes it can be controlled and you will feel much better. It is hard to learn about this at any age, but I would have had a better life for years had I known earlier...please accept a hug.

deleted_user 08/17/2011

I feel that I am in a very similar boat. I was just diagnosed back in January, and my levels weren't very hight either. I am the first in my family to get diagnosed, but I suspect there are others. I have since been deironed, but I am tired all the time. It has affected my work, but I've been able to stay on full time. I also have the thirst and peeing thing, but I too do not have diabetes or thyroid problems. I've also had a sleep study done with no results. My doctor is sending me to get a second opinion from a critical care doctor, just to see if there is anything else going on. He thinks that there still might be something pertaining to the quality of sleep I'm getting, but I'm not convinced that's what it is. I'm getting somewhere between 8-12 hours a night. If the other doctor figures anything out, I'll let you know.

deleted_user 08/18/2011

Thanks, Nicola and Andrea for the support and advice. Nicola, my hubs has come around a little but still pushes me to go to docs and continue my pursuit of finding answers to my extreme fatigue. The only problem with that is that I've been down so many avenues that there's little left to explore. The hubs just wants straight-forward answers and a pill that will make me feel better. However, he's become a little more emotionally supportive in my plight.
Andrea, I've had my thyroid tested so many times it's not funny! As with all other medical testing, my thyroid tests perfect. I am a picture of health! ;)
Mslm, perhaps de-ironing is the key for you. Ironically, my neighbor has taken on a roommate who has HH. She gets theraputic phlebs every 6 weeks. The week before her phleb., she's wiped out. The week after her phleb., she's wiped out. But the 4 weeks in between, she feels great. I wish I was her!
Stay strong with your partner...it sometimes takes a while for them to see the light. =)

deleted_user 10/14/2011

I hope that you have resolved this by now, but if not, this might help: I was told by my phlebotomist that too much water affects the hemoglobin concentration by diluting it and that their highest deferral rates occur during the summer because of this. It is possible to be too hydrated so try cutting back your fluid intake the day before and of your draw to see if it changes. Good luck. I go every other week because I'm getting scar tissue in my draw sites and the fatigue is almost debilitating now so you are not alone. Hopefully yours comes down soon and you start feeling better. It's good that you caught it soon. Mine was almost as high as your brother's when I was diagnosed 2 years ago.

deleted_user 10/15/2011

the thirst hing: check for diabetes, the fatigue thing; check your thyroid, the husband thing; i have no advice! Sorry. I know that I have four different doctors who are all extremely curious about my case because my levels were so high. I have a weekly phlebotomy unless my hemoglobin levels are below 10.5 which has never happened. I have an endocrinologist which I highly recommend because she is the one who really helps with the hormone problems which i had a lot of. I was in early menopause, had thyroid problems and severe depression and anxiety...all which caused extreme fatigue and lack of motivation. My hematologist does my regular blood work and I have a my hepatologist is there to let me know what i can and cant take to keep my liver safe. Ask your doctor for referrals to these types of doctors for extra help.

Good luck!

FeralFerritin 10/25/2011

I've had/got the always thirsty/peeing thing, been tested for diabetes twice but negative both times.

I know they check thyroid on some of us for reasons mentioned previously. I also know the thyroid is part of a control/feedback system (ie. endocrine) with the hypothalamus & pituitary glands (as well as other important glands like the adrenal etc.) However reading up on it this week it seems we likely have "Diabetes insipidus", caused by pituitary & kidney issues, which is unrelated to other diabetes conditions ie. Type1 & 2. Though no doubt "our" version will be slightly different and fall through the cracks. (note: HH does also cause diabetes mellitus)

Also, Hypopituitarism also has many of the sypmptoms we typically have, though as far as I know it's not attrubited to HH by the medical community (don't have time to research this properly at present)

lots of info on the net (this just from last site I visited)
http://www.pituitary.org.uk/content/view/41/
http://www.pituitary.org.uk/content/view/42/

Most of what I've read seems to suggest it's the pituitary gland that is the root cause. Is this why they check the thyroid (as a 1st step in diagnosis or is that specifically related to thyroid issues?). I don't recall anyone mentioned having their pituitary or hypothalamus glands being tested.

Will have to research this more some time

FeralFerritin 11/02/2011

Have done a very little more research

There are several types of Diabetes Insipidus (all of which are completely UNRELATED to diabetes mellitus, which is more common in the general population and is related to insulin) they are
Central DI
(cause: damaged pituitary gland affects ADH)
Nephrogenic DI
(cause: kidney doesn't respond to ADH)
Dipsogenic DI
(cause: thirst mechanism due to hypothalamus ADH suppression)
(& Gestational DI)
More info here
http://kidney.niddk.nih.gov/kudiseases/pubs/insipidus/

There has been a very little research done into the link between HH and DI, e.g.
http://www.ncbi.nlm.nih.gov/pubmed/12148115
Quote from this paper "More attention should be paid to latent NDI as another complication of hemochromatosis."

http://www.ncbi.nlm.nih.gov/pubmed/8808119
Though the value of this study is unclear as it is not genetic and was done with rats ...... but it may suggest iron will have a similar affect on humans with HH ........

Both these relate to Nephrogenic DI (kidney does not respond to ADH) but excess iron could possibly cause the others as well, I'd guess, as HH has been linked to the the pituitary & hypothalamus.

(Note: ADH = antidiuretic hormone)

deleted_user 11/02/2011

feral.... good look up!!! Thanks for doing the research!

zzzzzzzzzzz

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