My gp has discovered she has haemochromatosis! What sent her searching for an answer was the discovery that she no longer has underarm hair, and I think, loss of some eyebrow hair.
Now we all know that loss of the ends of eyebrows is usually toted as thyroid problems, so that was her first test. All normal, at some point an iron studies was ordered. TS% 62, ferritin 309 which is more than twice as much that a menstruating woman should be. Genetic test concluded homozygous C282Y. Age - she has two young teenagers.
She has already had one venesection and was lining up for another. She is happy that she has discovered this while she is asymptomatic. But is she? Obviously degradation of the hypothalamus, or pituary gland or whatever in our willy wonka factory that is responsible the turning on of body hair growth has been degraded by haemochromatosis even at this early stage. What else is going on too? That is the big question.
I lost my underarm hair probably when I was about her age or earlier, many years before the onset of the classic symptoms, as well the ends of my eyebrows. My thyroid tests were normal even though I always felt like I had thyroid symptoms. I never complained about loss of underarm hair - what is there to complain about? One less job to do.
After thyroid tests were found normal, drs lost interest.
Now I know that many women on this forum have mentioned loss of body hair without being specific. I never hear men mention it. Is it a 'symptom' for everybody? Should it be included in a check up by gp's? I bet my gp will include it in her health checks. That is the good thing about having gp's who have discovered they also have haemochromatosis.
I doubt we will ever see a study on it. Research funding is too hard to come by. But maybe we can pre-empt that. Hands up everybody!!!
Hi Sherry. Both parents had HH genes - dad was never particularly hairy so only noticed him losing hair on head. Mum lost under arm hair & all body hair in a patchy way after her hysterectomy. My sister had late menopause but lost public hair in her forties. I lost lots of body hair as I was entering menopause - - including eye lashes & eyebrows. Brother says he hasn't lost hair. Strange. I wonder if others are noticing this pattern. Thanks for sharing your ideas :-)
There was research done on this a few yrs ago and all they said was the jury was still out.I have the link somewere if i find it i will post it to you on here.
Thanks, if the moderator does not allow it after a few days, PM it to me. As the first male to respond, do you mind if I ask you what your status is regarding underarm hair?
Hi shery I have no problem with hair lost but iv'e seen some posts on a facebook forums for HH FE and some men had lost hair from their underarm and chest ,legs and head.But i'm ok ,I have all the other symptoms plus a few that other people have 'nt as my levels are of the chart my doc said i should be dead with such levels.But what does he know,Still thinks i got it because of drinking but im not a big drinker as i worked on tall building and you can't do that if ur drunk.lol
Thanks. I was hoping one of them was obviously about the underarm hair study. I have met and spoken to some of those published researchers plus one from France and another from Ireland (not about underarm hair loss though - got more serious questions to ask).
If anyone else wants to click on the URL, after clicking, delete the stop after the U and anything else after the stop or it won't connect.
I knew a 22 year old male whose ferritin levels were >4000 when diagnosed. He was homozygous C282Y. He lived and worked on a cattle property and ate beef morning, noon and night and probably in between, as they do. Was not into drinking alcohol either - had to work too hard for that, and it was not his nature to do so.
Now, at the time, it did not appear to have affected him other than severe fatigue, etc. Maybe because he might have not been absorbing and depositing for a long time, or, just because we are different and there appears to be no hard and fast rules, although, through ignorance, some drs try to apply them, or make up their own.
As i have a mutation of both copies of the HFE genes C282Y and H63D homozygous my level was >26000 when diagnosed and after 4yrs has not really come down a lot as i'm all so classed as a heavy loader with a 99% sats level.
Patrick, that is indeed extraordinary! I have to wonder that you are expressing units different to the rest of us. Is it ug/L (not being able to type the u with a tail on the first stroke)? I had someone else tell me similar once, but the readings were actually differently expressed.
I heard of a man in the US (back in 1998) whose level was 10,000 and he made the news. My TS% is often 99, 100 and even 107% one time. Have you read Prof Pierre Brissot on TS%?
My son is compound heterozygous C282Y/H63D, my husband being homozygous H63D, and of course, I am homozygous C282Y (the most aggressive). Haemochromotosis researchers keep saying compound heterozygous rarely causes iron absorption, H63D being the least aggressive. However, our son was 772 when he was just 22 so I cannot agree with them, as I have come across others in the same boat.
If 26,000 is indeed ug/L then you may have something else going on as well and they should perhaps, search for another gene, not just stop at the HFE genes.
I have never been a particularly hairy person but about 5 years ago I started to get a bald patch in my pubic hair. I didn't really think much of it until I was diagnosed with this. I am compound and have a vast array of symptoms even though my levels are only around the 550 mark. Now having treatment but BP crashes immediately so have to be pumped full of saline before during and after. They are only taking 250ml every time so it's going to drag the whole thing out. Laura
Yes, we don't tend to worry too much about loss of body hair - but very much about head hair.
I am sorry to hear you have a problem with BP and venesections. Do you have a small body. There are others who have a slight body and need the saline drip.
Luckily, with compound genes, the iron loading is not very aggressive ... or so they say!
I like the way that we don't know what anyone looks like on here but put an image in our heads. I don't think anyone would ever think of me as having a slight frame. Thank you!! Haha. - I'm 5'11" and weigh about 13s and do carpentry and welding for a living made me smile tho.