please can u explain more i couldnt understand the issue.

if it was that Dr.s are giving you medications and accusing you of trying to suicide thats totaly terrible.. what u need to do my freind

1- get rid of all the fears nothing will happen yo u at all if you are having control on your ferrtioen levels and you will always be better with time dont worry

dont take medications unless you read in the ned about the side effects of it and even post to us maybe all we can help.

3- read but dont try to suffer from what you are reading cause that one time was going to get over me, everything i read i kept feeling just try to free your mind and let it go

i hope i did get anything right.

bith ways i wish u a good health and may god bless u.

ty for your reply. i was diagnosed with HH in 03 and since then it has been nothing but a nightmare, with no hope in site.

i refuse to go to the dr at all because of the treatment i have received.

at first, i took what the dr's gave me because i actually thought they were trying to help me. but when i went back and told them that i couldn't take their medicines, they told me that this was medicine that works over a period of time and it had to build up in my system.

well it did and i ended up in intensive care with a dr in my face when i came to wanting to know why i was trying to commit suicide. he said the levels of drugs in my system were lethal.

I found a new dr and told him what happened. he proceded to label me with having "drug seeking behavior" and in the end told me that if i wanted his help i would take what he gave me, which were the same drugs that put me into intensive care in the first place.

yes, i am bitter. because of the lack of compasion and concern, i have lost everything, home, job and family.

was just wandering if anyone else has been thru this?

Dear Scared, I am a little confused why your Dr prescibed drugs for HH. The treatment is phlebotomy plain and simple. As far as i can see no drugs are needed unless you are de-ironed and symptoms persist. What was your last ferritin count? What was it ar diagnoses in 2003?

Welcome Scared, I have never heard of anyone being perscribed drugs to treat HH. The standard for HH treatment is phlebotomy. Did the HH cause other conditions that you needed drugs for ? Have any of your doctors every used phelbotomy for your HH? Are you having labs done on a regular basis?

there are drugs to remove iron. but usually dr.s only do this step if someone isnt able to do phlebs

Do u have any organ damage, do u have any other issues rather than HH... if not be ware u need no drugs at allllllll be ware of these Dr.

we all have the same cases with little changes but we all have to do these tests always

make ur ferttein test
make ur hemoglobin test
make ur iron test
make ur saturation test
make ur liver enzymes test and
as well every six month the alpha peto protean test (important)

if your ferttien and saturation were little bit hight or high what u have to do only in donate blood if ur hemoglobin is good until u have a normal ranges then to monitor them only

medications will affect ur liver on long term.. read about any medicine that any doctor gives u over the net and check it and why it is used, if any issue on that dont take it.

do ur tests and donation and u will be fine

this issue didnt happen with me and at these days i dont take medications at all until i check them carefully, even my doctor tells me to keep out of them

wish u all the luck

ah fadih....you hit the nail on the head!!! i have tons of organ damage, including damage from a galbladder surgery and stomach erosion from my hemochromatosis not being properly diagnosed.

all of these tests and surgeries took place BEFORE i was diagnosed with HH, leaving me in horrible pain to this day.

NOW i'm being told that "i shouldn't be in pain from the hemochromatosis".

DUH.....i'm not in pain from HH....only the aftermath of the dr's incompetence and refusal to assist me with pain management.

now i'm left to pick up the pieces myself....i guess it was easier to make the patience appear to be incompetent instead of admitting fault.

btw....i am 49 yrs old and was not diagnosed until june of 03 and had never even heard of HH until the test was presented to me in 03.

my questions is....with all the visits to the er and the blood tests taken from those visits, why did it take a lifetime for it to be addressed.

http://hemochromatosis.blogspot.com/ .....the description in this blog was written by a person i have never met, but it appears that they were following me around, taking note of my life for the last 15 yrs. every word that is written is true....so heart breaking

Your situation is most unfortunate, so sorry to hear this.
It is clear now I think, that your medications were for pain, and the result of progressed HH? Do you now have adequate pain management? Have you been to a pain clinic? Are you located in the US? or a metropolitan area? There is no reason you should be suffering because of mismanaged medical care. There is help out there, you just have to find it.

Welcome scared...
What a scary time you've had of it! Do you have a gastroenterologist (GI) doc or hemotologist? If not, you might call a few, ask to speak to a nurse practitioner and then ask if they see other HH patients. Maybe then, you could have a little more faith in the doc. Unfortunately, many doc's still don't have a clue BUT the people in this group have YEARS of knowledge & can offer TONS of info & suggestions.

Good Luck!

zzzzzz

Welcome scared,
Try not to let one Dr stop you, there are lots of good ones . . . even a few that are good with HH!!! They may be able to help you with your current issues.

I only recently found out my uncle had some terrible problems most of his life that were never diagnosed, but from his symptoms and my diagnosis it seems certain he also had HH. For a long time they actually had him taking iron pills, when that didn't help they started injecting him!!!

The drugs used to treat HH are very strong and can have serious side effects, as HH affects the liver etc could it be that this already compromised organ allowed build up too fast as it did not remove any of the drug from your body?

What did they give you?

it wasn't just one dr......it was a multitude of dr's. never, never, never come to alabama for any kind of med treatment.....they will kill you if they can't help you.

i refuse to go back to the dr. what good is having my #'s read consistently if no one is going to help me.

as a result from me "letting the dr's take care of me", the veins in my arms are burned out, so i allowed them to put a cath in my jugular vein to do phelbs....it never worked and my body all but shut down on me.

later on i found out that i have vagul nerve damage.....the last dr i went to said i didn't know what i was talking about and completely dismissed it.

i had them take the port a cath out and i haven't been back. that was in 2008.

You have to be careful with drs. some are good and some are nuts. I started feeling run down and lousy almost 4 years ago, but I thought it was just burn-out. 3 years ago a lot of negative things happened in my life and I began to suffer from unbearable and non-stop anxiety. I sought treatment. Anti-depressants did not help, but anti-anxiety meds did.

I insisted that the anxiety had some connection to the fatigue I suffered. Tests were run, but nothing was discovered. My ferritin tests were in the 290s, which is in normal ranges for a man (i'm a menstrating woman), and they never checked the actual iron levels. However, I was allowed to continue on the antianxiety med. Meanwhile, I went to different drs. They checked my actual iron levels and found a 97% iron sat. The gynocologist also found a polyp. For whatever reason, the polyp seemed to prevent me from bleeding that much.

I had the polyp removed, went to a hemotologist who diagnosed me with HH and started phlebotomies. Without my polyp, I began to bleed very heavily each month. I reported this to the hemotologist. Apparently, he chose not to check my ferritin levels regularly and within 3 months my ferritin was down to 10. We stopped the phlebotomies and 3 mos. ago my ferritin had gone down to 9 on it's own. The hemo. dr. seemed happy about this, but 9 is heading down the road of being iron deficient.

Meanwhile, the dr. who was giving me antianxiety meds left the practice and I began to see another dr. in the practice. She was not happy with the antianxiety meds and refused to believe that I had been diagnosed with HH. Initially, she gave me the meds. She went out of town for one of my appointments and I saw another associate. The next time I saw her, there were needle marks on my arm from the phlebotomies. She accused me of being a drug-seeker and doing street drugs. She told me to see a psychiatrist. I did and in my file it is said that I am a drug addict most likely doing street drugs. I got no help from the psychiatrist.

Now, I'm afraid to see a dr. I am going back to the hemo.dr. in a few weeks to have my ferritin checked, but I'm not sure how to proceed from there. I think drs. have good intentions, but in the end, they don't really care about their patients. I feel as lousy as ever and my life situation has gone from bad to worse and the drs. seem determined to not help b/c they are too busy. Even my hemo. dr. pushes me off to the side. If they are overbooked or something, I get a call saying that my condition is unimportant and I can wait to see the dr. =(

hey hang in there! Seems like we have to be our own dr sometimes!

@zas.....
Whew!!!! Must be driving ya CRAZY! Wonder if we should universally carry a letter from our prescribing, phlebb'ing Dr (whether it's hemo/GI/GP)? Since sooooooooooo many in the medical community are TOTALLY clueless to HH & the treatment for it, maybe it would help.

AND, I think you should have your doc write a letter and send it to EACH of the other Doc's who have accused you of being a druggie/drug abuser/drug seeker! You need to get THOSE records corrected and their documentation rescinded!!

As I think more about it.... I'm going to ask my Doc for a note/explaination of my HH, on office letterhead, and laminate it as a wallet card. Yeah, I'll have to reduce the copy but I might be able to get it legibly, small enough to carry.

GOOD LUCK!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
zzz