What are the chances of hemochromatosis?

Allergies, blood and immune system
1

Hi all... I live in Canada so the measurement may be different here for iron, TIBC and saturation index.

in 2011 my test results were as follows :

iron  *32

TIBC 50

saturation index *0.64

For the last ten plus years I have been going to the doctor with varying symptoms including hair loss, extreme fatigue, hormonal imbalance, variety of aches and pains, brain fog.  They said it was depression, tried me on a variety of anti depressants, which I ended up sleeping 18-20 hours a day. Regardless of me saying I'm not depressed, something is wrong. I soon started to believe it was all in my head! I lost my will to fight and argue. 

Now the last 3 years...I have had nothing but joint issues, stiffness, inflammation , head aches, nausea, stiff thumbs and pointer fingers and extremely tender feet. Thing is the joint issues come and go over a 3-5 day period , but it's immbolizing pain. I haven't been able to figure out triggers. 

So my current doctor referred me to a rheumatologist. She diagnosed palindromic rheumatism and fibromyalgia. She also ordered the hemochromatosis HFE test . 

I guess I'm asking if it's possible that I have it?

HFE test results take up to 3 months to process here in Canada.

Thanks a bunch for any speculative guess! I'm just so fed up and exhausted.

😏.

 

2

Hi debbie, from my perspective and experience, it certainly looks like it.  Your TS would read 64% in my country which puts you well over the 45% which is indicative of genetic haemochromatosis.  You don't say what your ferritin iron level is.  Do you mind telling us how old you are?

I am now 66 but my symptoms can on when I was 39 immediately after a hysterectomy.

Your symptoms are all listed as symptoms for haemochromatosis too and I suffered all of them during the 9 years I was left undiagnosed after a hysterectomy which meant I was no longer losing blood, and loading iron big time instead.  I was diagnosed when my hips broke up from osteo necrosis - my blood was so thick with iron it was blocking the fine capilliaries which fed the bones, so my hip bones died and broke up.

I am very interested to hear that you have tender feet which is something I have been suffering for the last couple of years, although I think they sneaked up on me slowly.  It became too painful to walk and put my feet on the ground, and they even throbbed, burnt, spearing pain, tingling, sometimes loss of feeling when I was in bed.  Sometimes I have stood up and not been able to feel my feet, so I have toppled over.

Had almost every test going, except seeing a neurologist even though it was suspected I had neuropathy (I don't have diabetes), paid $500 for orthotics which did not work because it was decided I had metatarsil problems.  The only two things which have helped is epileptic medication which is given for neuropathy (an immediate reduction in pain), and using mary jane sneakers with a rocker style sole.  I can walk anywhere with them.  They take the pressure off the ball of the foot, and I walk heel to toe like we are meant to.

Unfortunately, they are too hot in summer when I need sandals, and while they were a craze for a while (they were supposed to give shapely calves), they are now very difficult to find.  A website MBT sells some but they are very clumpy - their soles are too thick.  Skechers have something slightly similar, but not in dressy or sandal styles.  You might have a better choice in Canada or the US.

What is interesting is that I have not heard of anyone with haemochromatosis complain of this before, and it is not listed as a symptom.

 

3

Hi Sheryl thank you for your prompt reply. I meant to mention my age which by the way I am 58. The doctor said I went into early menopause and that was why my hair fell out. 

My symptoms seem to come out of nowhere...one day Im fine , still brain foggy, but relatively pain free and then I'm fłat on my back in excruciating pain and discomfort.

As for feet...I too had orthotics  made, I developed a mortons neuroma after  I used them and was basically hobbling around for about 3 weeks.  Then I had a different set made

, which doesn't make any difference when a flare happens...and the pain you describe is exactly what mine feels like. 

Unfortunately I only have those test results I have already provided. I'm just so sick and tired of being sick and tired. And now having to wait possibly 3 months or longer , I guess I'm just reaching out.

i truly appreciate your prompt reply . I hope your feet get better soon , sorry to hear about your hips. I can't even fathom the pain and discomfort you must have endured. My great aunt had osteoporosis so bad her bones literally turned to chalk. 

Ya...life is a journey...I wish you good health and pain free feet. Thank you again. Deb 

ps: thank you for the shoe recommendations, I'll definitely check them out. 

4

If you have the HH genes, then the onset of menopause (ie. no longer menstruating) will allow you to load iron.

You get a double whammy of menopause because a lot of the symptoms of HH are the same as menopause.  So both need to be treated.

My hrt (oestradiol) does not seem to be working properly now and some  of my symptoms have returned, including hair loss and head sweats (and sometimes all over night sweats).  It is hard to work out what is the culprit - HH or insufficient oestrogen.  However, I am supposed to be de-ironed now with a ferritin level after venesections every 3 months of about 30-34.  So therefore, theoretically, it is insufficient oestrogen.  It is just hard to get it across to my dr.

I am telling you this because at your age, you do need to have both treated before you will feel normal again.

Best of luck with it, and feel free to ask more questions.