My Haemochromatosis diagnosis is kind of a relief
Posted , 4 users are following.
I have literally just been diagnosed. Not started treatment yet but have been told what to expect. My Fibroscan today was normal, I have an Ultrasound scan next week. The high Iron levels were picked up through routine blood tests i'm required to have because of medication I take. For quite a while i've felt abnormally tired,weak,depressed,painful joints etc. I never visited my GP because a lot of the problems I have been experiencing I just put down to the aging process , (i'm fifty) and well frankly,because i've felt too depressed to.. I understand the treatment will prevent further more serious health issues,but can anyone who has similar experiences tell me whether the treatment will help with my existing issues, tiredness,lack of motivation,lack of sex drive,painful joints etc etc
0 likes, 5 replies
selina58849 carol28050
Posted
I keep watching to see if anyone replies to you because I'm new to hh too and wish to know if my tiredness and joint pain will cease as well. Some days are worse than others for me. I've so far only done two blood donations which I do once a month and am still menstruating. 42 years old. I'm yet to find out if my ferritin levels have gone down and have an appt next week with the hematologist which I've had to wait 4 months to see. There seems to be so much information on anaemia but very little on iron overload in comparison. Doctors only know so much as well so it is very frustrating. Also every individual is different with symptoms and there are a huge list of possible symptoms. I know this doesn't help but maybe just to know there are others in the same boat as you may make you feel less alone.
carol28050 selina58849
Posted
Hi Selina,thanks for responding. It's weird really, apart from the obvious and noticable symptoms I am noticing less obvious things now. I've never been gorilla hairy but I noticed that my forearms are now virtually hair free and that I rarely need to shave my legs.. I never thought anything about it before, just added it to my list of things that must be a result of my age.
I have an Ultrasound scan this week,i'm guessing after that I will see the hematoligist who will be able to answer some of my questions,treatment will start after that appointment I guess. At this point my thoughts are that with the joint pain,the damage is already done and maybe the best I can hope for is that treatment will prevent or slow down further damage. The scary thing to me is the lack of awareness generally. I would never have visited my GP concerning the symptoms,because they present themselves ,for me anyway at an age where I just think 'it's part of getting older' I do really hope the treatment will help with the tiredness,for me it is the most debilitating.
I dread going to work because I feel exhausted before I even get there,the physical demands I really struggle with,I just don't have any strength,even on my days off I have no energy/motivation. Your right, everyone is aware of Iron deficiency but nobody is aware of Iron overload. Ironically, my sister was diagnosed with severe Iron deficiency last week and had to have blood transfusions,we had a bit of a giggle about that, I told her she could have some of my blood !
The guy who did my fibroscan told me I can expect weekly blood donations for at least a year or longer , that seems a lot to me and i'm wondering if I can expect to feel worse before I start feeling better. I too am still menstruating,sporadically,something I assumed was to do with my age. Working out what's age related and what's 'something else' is a minefield...Please let me know how you get on with the hematologist , what answers you get. Sorry for rambling on, so much stuff to get my head around.
nickkubricht carol28050
Posted
carol28050 nickkubricht
Posted
Hi Nick. I start treatment in a couple of weeks,it will be weekly Phlebotomy , the pill isn't licenced in the Uk and only given when Phlebotomy isn't a realistic option. Expecting a long slog SeFn 1450 TS 100% How far into treatment are you?
sheryl37154 carol28050
Posted
My symptoms started within 6 weeks of having a hysterectomy in 1989. The fatigue (slurring and staggering) and body pain were unbearable, fuzzy brain, chest pain, etc. Somewhere along the line I too stopped growing underarm hair and leg hair but that was the best part of it. I was diagnosed when my hips broke up in 1998 because my blood was so thick with iron it could not get into the finer capillaries that fed the hip bones.
Because I had been undiagnosed for so long with such severe symptoms, my fatigue and body pain lingered for years despite being 'de-ironed' and I have been on maintenance of 3 monthly venesections for years.
I eventually had to stop working (it was killing me but I wanted to keep going) when my husband got Hodgkin's Lymphoma and it was the best thing for me to stop working. I still can't do a full day and I am in bed about 7-7.30pm not necessarily to sleep but because my body does not want to stay upright any longer. However, I feel better now during those day hours and get more done.
Haemochromatosis also can cause early menopause, and the early symptoms of HH are the same as for menopause. (And andropause for males.) So improvement in how you feel can also happen when you investigate your hormones and take hormone supplements.
Not everyone is the same so don't go thinking that this is how it will be for you too.
There is a LOT of information about haemochromatosis online - but your dr and even haematologist is not likely to be bothered enough to look for it and read it.
Just google whatever is troubling you and iron overload. E.g. "tired, weak and iron overload". There is so much research out there. Yes, you might have to read some mind bending academia but the answers are there. My favourite researcher is Prof Pierre Brissot, Rennes, France - he has researched most things about haemochromatosis than others have.
Ask for your Vit B12 and Vit D to be tested - deficiencies in these can cause major problems. If low in Vit B12, then injections are the best way to go, and in low in Vit D3, look for a practitioner's brand Vit D3 drops. They are proven to work. Tablets just don't work for some of us.
Good luck with it.