Any Long Timer's out there 28 years with HH

Does 25 years since known onset but undiagnosed for 9 years count?  I had to have a hysterectomy so therefore stopped menstruating and started loading iron immediately.  I knew something was wrong.  Kept complaining of severe fatigue and body pain but ignored.  Then slurring and staggering, can't remember anything, can't focus, i.e. brain fog.  Then one day while stepping sideways out grocery shopping, my hip broke up (I had been complaining of specific pain in that leg and hip for a long time).  Radiologist knew what it was.

My gp said she did not think I had it because "I did not look like I had it".  What was I supposed to look like - the end result, needing a liver transplant?  I ended up having to have both hips replaced (osteo necrosis because my blood was so thick with iron that it blocked the finer capilliaries that fed the bone).  But one was a botched surgery so a further 12-13 years of pain standing, sitting, walking, sleeping, etc and lost muscle.  Almost needing a wheel chair.

I also had pain in left side chest but cardiologists could not 'see' anything leading up to diagnosis.  Once I started venesections, the chest pain dissipated but if my ferritin iron increases for any reason, the chest pain and arrythmia comes back, and that has happened as low as ferritin iron level of 56.  So heart damage has definitely happened.

I am still suffering fatigue and body pain despite being 'deironed' for 14 years.  I just keep being told I should not have any more problems cause I am deironed.  Cancerous tumours, multinodular half thyroid, pituitary gland adenoma have all occurred since.  Severe loss of oestrogen despite using HRT, Helicobactor pylori because it thrives on iron, as does cancer.  It never stops.

My husband and son were also diagnosed with it after I was diagnosed.  My husband went on to have Hogkin's Lymphoma too but there is no evidence that it is connected.   He survived.  When I was given beta blockers because of severe arrythmia, it dilated my blood vessels and let the iron into my brain causing fog, could not think, articulate, brain not talking to bladder, and when I tried to drive to dr could not remember where I was going, then another attempt reminding myself I was going to dr, I could not remember how to get there, then I realised that I could not read the traffic lights - I did not know what to do.  I have not driven since.

Yes, it does cause severe depression, among many other things.  The hypothalamus does not have a blood brain barrier, and allows the blood in to 'taste' it, then the iron is deposited into the hypothalamus and pit gland, as well as into other parts of the brain.

It is interesting you mention high humidity.  Do you find the heat affects you worse than others?  That happened to me for 6 years - severe sweating of head and face - prior to someone finally sending me off to an endocrinologist.  That was where it was found I had the prolactinoma.  High prolactin was making my oestrogen ineffective sending me into severe menopause.  That problem dissipated when I was put on Cabergoline to reduce the prolactin.  However now that my prolactin is in the normal range everytime I try to reduce the medication the sweating begins again.  I just can't stand the heat ... and I can't get out of the kitchen!!!

But then, sometimes, up to four times a night I wake up frozen to the core.  I think it is because the hypothalamus, which is supposed to regulate our temperature, is not now working properly.

I found I can't digest sugars and starches and since eliminating them, my digestion is much better.  Research has found that we with HH do not digest sugars and starches very well so I am on the right track.

The fatigue and body pain was still shortening my life.  Bed immediately after dinner at 5.30pm.  My body just has to become horizontal.  Sometimes my blood is so thick and black they can't venesect me properly.  I tell them to keep going and get this s... out of me.  (Still better than having chemo though.)

I began to realise that if my blood is so thick and black, no wonder I feel like I am dragging a huge chain and achor around with me and my body was so painful.  With no answers from the medical profession, I decided recently to try aspirin (100mg per day with breakfast).  What a difference it is making!  I feel lighter, walk faster, and I WANT to do things.  I started going to the gym to try to strengthen my muscles again as I was heading for a wheelchair.  Although I still crash and burn, it is because I am now pushing my body harder and harder.

I find I can take stuff to bed with me to do while lying propped and therefore extend my day a little more.  My next venesection is mid June.  I can't wait to see how that goes.  If aspirin is the answer, then I have wasted a lot of years unnecessarily.  I can't advocate it, and it is still under personal study, but so far it is working for me.

Up to now, my optimal ferritin iron level is about 34.  I go up to about 60 at end of 3 months, then a proper venesection of 450-500 mls brings me down to about 34 again.  But my transferring saturation % is often up to 100%, recently it went to 107% (how can that be?!), and my serum iron is still quite high.

If you don't do this already, ask your dr for copies of all your blood tests so that you can keep an eye on your levels too and check back on how you went in the past.

HH is hard to explain and people don't comprehend.  Even long term friends and relatives think it is just a temporary thing and don't understand why I rarely go anywhere, my house is a mess, etc. etc.  I just have not been able to keep up with life for a long time.

I recently read about fatigue and MS.  They too are very affected by heat and are weakened by it.  I think that describes a lot of us with HH.  Maybe people will understand this complication more if we say it is like having MS.  But then a lot of people don't know what MS is either.

I was superwoman before my hysterectomy which started all this.  In Australia, we are fighting to get everyone genetically screened for it at a young age, at least 18, if not younger.  The cost has always been used as an excuse - said to be $100+ a person.  However, I found out that pathologists only charge about $36.  And $27.95 for an Iron Studies test which is the minimal that should be done on a regular basis.

Do you connect with an HH organisation?  The Iron Studies Institute looks very good in the US. I have bought a couple of their books and often check their website.  In the absence of a support group, I started one myself because I was so fed up with hearing about people with the symptoms and being ignored by their drs.  At least I can tell them what tests to ask for, and if their dr not cooperating, then which dr to go to who does know something about HH.

We would not have all these health issues if we had been diagnosed and treated early.  It has cost me thousands of dollars, as well as the government health budget.  I had to give up work years ago.  A $36 genetic test would have saved all that.  If you can, contact your HH assoc and see what you can do to spread awareness and fight for genetic screening.

Keep talking if you are not put off by my rant!!!

PS:  I can't understand why medical shows like Dr Oz and The Doctors never mention HH.  After all, one in 200 have it, one in 80 in the Irish community, and one in 7 are carriers.  These are the figures for Caucasions, but numbers are rising in other cultures because of mixed marriages.  And some other countries have their own version of haemochromatosis.

I really love your description 'feeling like a box of rocks'!  Before diagnosis, I would say I felt like I had lead in my veins - I was not far wrong.  I still do!

I totally agree with you on the un interest doctors on this side of the pond have when dealing with HH. I have been going to the doctor for the past 6 years since my hysterectomy with most of the symptoms of HH and have always had them blamed on other things. Low Iron (at one point I was perscribed iron pills.  Everytime I took one they made me sick to my stomach), pre menapausal, obesity (short and a little chunky), Arthritis, depression, and the list goes on and on.  Finally I got Ticked Off (not what I was really thinking but hey, this is public).  I goggled high Iron in women and when HH came up and I noted all the symptoms It was definitely an AH HA momment.  Since then I've been trying to get the testing done but have been given the run around by my previous doctor (as of last week).  I went and had the testing in December and as far as the doctor could tell the results were either never received or was misplaced.  I live in rural Newfoundland, Canada and our health care system is the pits and it wouldn't surprise me in the least if they got lost. We have a hard time getting referrals to any specialists because rural doctors don't stay long around here and if they refer out they lose out on fees.  Now I have a new doctor who has done further bloodwork and if Levels are still high he is going to re do the DNA testing.  He actually knew what I was talking about. (he's not from Newfoundland)  I know my ferritin levels are low compared to some people on here (mines only 277) but the correlation of symptoms is unbelievable.  I'm so glad I found a community who understands!  Seeing how long you have had this what are your recommendations towards diet, getting children tested, coping (this is a big one for me)...etc

 

Did you or any of your family ever get diagnosed with NAFLD(Non Alcoholic Fatty Liver Disease) or diverticulitis?  Just wondering if these could be related to HH.  I was just told I had both of these after getting a CT scan for abdominal pain.