am i the only hh person with skin rash?

Allergies, blood and immune system
1

I'm 47, had symptoms since at least last summer, eventually got diagnosed in Jan this year, but can only get to see haematologist in June. Main symptoms fatigue, very itchy rash on neck and lack of sensation on neck skin, depression, joint and muscle pain. It takes a whole week to recover from one hour of exercise. Docs all say rash, depression and muscle pain not part of hh and more or less dismiss my symptoms saying my levels are not so high, although saturation levels about 85%. To be honest I am very confused about all the different levels everyone talks about knowledgably.

I feel shy about posting on a forum as normally v private person and never done so before. However I really want to know if docs are right or if anyone else has rash?

2

Hi moodyali, well your tsat level of 85% is very high indicator of haemochromatosis - what were your ferritin iron levels? I have not heard of itchy rash as being a symptom. However, if you have iron deposits in your skin, you could be having a reaction to it. I have iron deposits in my skin in the top part of my body from neck to decollage and same at back. I look like I have a fabulous tan there and there are no strap marks.

It was so long ago now that I don't remember if I felt itchy when it started as the fatigue and joint and muscle pain overrode everything. Depression is also part of the game and it is physical not psychological.

Are you in perimenopause, still menstruating, full menopause? If you have genetic haemochromatosis, you will have started iron overloading. However, I am in communication with a couple of young women in their very early twenties who got the symptoms, were diagnosed, even though they were menstruating.

Ask your doc for copies of test resuts, check out the website for Iron Disorders Institute, especially the forms section which will give you numbers to check against, take a copy to your doc, and if no positive reaction from him, change your doctor as he does not know enough about haemochromatosis.

And/or, if he still sees no reason to venesect, go to your nearest Blood Bank and start donating, at least every 3 months. It will still be good for you even if you do not have haemochromatosis.

Actually, just reread that he has referred you to a haemotologist, so that should get the ball rolling too. Can you wait that long now that you know a bit more?

Let me know how you go.

3

Hi Moodyali, welcome to the madness my friend.Dont worry about being shy etc, we are all in the same blood lol boat pun intended.

My first thoughts after reading your post is please try and see another doctor.

1)Muscle and joint pain is the main reason i went to my doctor before being diagnosed.

2.) My Doctor told me i had depression and it was a symptom of haemochromatosis.

I have since confirmed these symptoms as being due to haemochromatosis via other web sites and also from letters from my hospital.

And the Fatigue is part and parcel also.

I was even taking iron tablets a few years ago because i was told by a friend my fatigue could be due to low iron.Again this can be true but if you have been diagnosed in having the faulty gene(the celtic curse) i am suprised you have to wait as long to see the haematologist.

I am 41yrs old Scottish Male and i was diagnosed in May 2012 and within a month i had been to the hospital and had my first pint of blood removed.

I didnt even get to see a haematologist as i got referred to the Cancer unit but after worrying for 2 wks prior to my appointment, i realised it was only because thats what unit the Phlebotomist was available to see me.

However my hospital is 30 miles away and at the time i was working 12hr nightshifts 5 nights a week, so i asked if it would be possible to attend my local health centre once a fortnight to have a pint removed.I cant recall my saturation level but i remember being told my iron levels where about 868. It has taken me to have 13 pints removed to reach my target of below 50. Since hitting this target, i now attend my surgery every 3 months and i am finding my levels are creeping up to about 56. I then get another pint out and thats me for another 3 mths.

As for the rash, I recall my face and behind my ear`s getting a recurrent red rash, but my doctor reckons its Seborrhoeic Dermatitis and has given me cream called Nizoral.

I also have a very dry scalp and for someone who was never bothered with dandruff and who always used Head and Shoulders Anti Dandruff Shampoo suddenly has for the past 3 /4 yrs developed what looks like Dandruff. I am also treating this with a special shampoo from my doctor which is called Selsun, and it seems to be working very well although thats my 2nd attempt as the first shampoo was called Nizoral the same make as the face cream. I have other problems but still under investigation and awaiting resuls, so i wont bore you with that as all of us seem to be experiencing different things and lots of similar problems with this Celtic Curse, (somehow it seems to be a common blood disorder linked with irish descendants) I didnt realise my Dads side where linked to Irish descendants until i was diagnosed and done some digging around.

Did your Doctor`s tell you how important it is to inform Parents,Brothers,Sisters and if you have kids everyone should have a blood test to identify which side of the family needs to have blood removed. Dont worry i was told my kids need to wait until they turn 18yrs old before they can be tested. But its my Father who is the carrier and his iron levels are perfect,and he has no symptoms what so ever. But my younger brother 30yrs old is HH same as me and has hit his target recently and his iron levels are below 50 now. Also i passed the word to my cousins in Glasgow who are my Dads brothers sons, and low and behold one has HH and being treated as we speak and the other brother is clear. I hope i havent given you too much info at once to take in but i am only concerned for you and your family and this is only my own personnal experience that i am writing word for word, (typical Virgo) wont post anything unless a million times happy that it is the truth. The best advice i can give you is seek another doctor and do not eat breakfast cereals that have added iron.(i avoid them all) also cut out red meat and liver and google a diet for haemochromatosis. Even baked beans have high iron but i still eat them lol also smoking increases our iron levels and im trying to quit soon. Another thing to avoid is vitamin C in supplement form. ie health vitamins with vit C but you can still eat plenty fruit and vegetables that dont have a high iron content. (Spinach) is one to avoid although i`ve never tried it anyway.. Read what you can and i expect lots of replys for you from a wonderfull bunch of people on this site with the same blood as you and i (our blood brothers and sisters) love to you all. dj quick-fit x

4

Omg, our "blood brothers and sisters." Amazing lol

What exactly is your current iron/ferritin level? Mine was hovering around 600 for a period of six months before I was referred to a haematologist because I was about 21 at the time and they wanted to make sure that it wasn't just something else going on with me.

I don't recall ever having a rash that I could attribute to HH but for my whole live I have always had sensitive skin. Who knows, maybe that's a sign that you'll develop it in the future or something...? I'm really not sure. My specialist has never mentioned skin irritations as a symptom to me. But at the same time, I've also suffered from asthma since I was about 11 years old and when I was a baby I had eczema, something that is commonly linked to asthma (and so are skin irritations) so that could be all it is for me. So in terms of your rash, I can't be any help there.

In reference to QUICK-FIT wondering why it's taking you so long to be referred - that's how long it took me as well. I remember I was initially referred to a haematologist in September or something and my first appointment wasn't until the end of November. Do you mind if I ask where you live? I'm in Alberta, Canada, so maybe our systems are similar because even though iron overload is incredibly common, hardly anyone knows about it so there aren't as many resources available as in other places around the world (like Ireland).

When speaking to my specialist, he told me that depression and anxiety are not symptoms of haemochromatosis but that's s***. I think there just haven't been any studies done to confirm that but so many people on this board have dealt with it so that absolutely could be in relation to your iron overload, if that is indeed what you have.

The one thing I'm unsure about with you though is I don't really know why it takes you so long to recover from one hour of exercise. Even when my iron level was at it's highest, I could do an hour of exercise and yes, I would feel fatigued but I often found that if I had one of those days where I didn't quite "wake up" and I felt a bit foggy, the endorphins from exercising would perk me up a bit. I've exerised regularly for a few years now and while sometimes my fatigue makes it more difficult to even hop on the elliptical, it's rarely ever stopped me from exercising the 4 - 5 times a week that I do. However, extreme fatigue is definitely a symptoms of depression so perhaps you're getting the double-whammy there.

 

5

thank you so much for your reply - I have a wonderfully supportive husband, but have still felt alone with this. Thank you too for referring me to Iron Disorders Intstitute charts - all the stats look confusing, but I hope in time to figure it out. I've been told my serum ferritin levels are 250 and understand these, plus serum iron levels of 45, are not particularly high. However, I feel so fatigued and can no longer remember how it felt to feel healthy.

I am probably in perimenopause - have a coil with hormone so it's difficult to say. I originally went to doc back in October because I thought my symptoms were start of menopause.

I will be asking for copies of test results from now. It's really frustrating having to wait so long. I live in SE England and think the medical system in this part of UK must be seriously over stretched. The Gastro consultant I eventually saw beginning March referred me for a liver scan and was told then it would be a minimum of 9 weeks! Have not even heard about appointment date yet. I do believe my appointment with Haematologist in June will be to venesect, as that's what Gastro consultant said. I don't know how to get seen sooner. 

thank you for the support

 

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Hello, grateful for your animated sharing and advice. Docs I've seen said joint pain yes, but sniffed at muscle pain. I am a Scot too, but live in SE England and it seems we have to wait weeks and weeks for pretty much everything on nhs here.

It feels as if haemochromatosis is not treated as an impotant disease. Of course people with e.g. cancer should come first. But it is still hard to wait when every weekend is spent sleeping to recover from the week. I was an early riser always, but now finding it difficult to get out of bed before midday weekends. I am sleeping my life away. 

Yes, have been told to refer my brothers and sisters and children over 18 and am doing that.

I can glean from you and others that it's important to be proactive in this and it's certainly helpful to hear others' experiences.

Thank you

7

Hi moodyali, I can confirm to you that a member of my support group reported having a terrible itchy rash from his skin stored iron on his legs.  As you can see, everyone is different.  Drs are in terrible denial.  There is plenty of legitimate research studies done on various complications of haemochromatosis.  They just don't read it.  Google 'muscle pain and hemochromatosis' and see what you get.

I do vaguely remember clawing at the back of my neck in the early years - just did not connect it.  I also seem to have a dirty 'orangy' stain on my necklines even though I scrub my neck every day.  Now I know it is the 'rusty' iron coming out.  The itchyness did go away with venesections though, thank goodness.

Somewhere on this website - search haemochromatosis - I am sure they list the local haemochromatosis organisations.  You can make contact with them and get some help and advice from them.

There is often not a lot you can do about your symptoms except have those venesections, and don't miss any.  Perhaps search for an anti-histamine cream for the itch in the meantime, or an anti-inflammatory/anti-histamine tablet.  I have the same problem with fatigue and pain and just cannot do any exercise, and just doing the weekly shopping lays me flat for a while.  I used to be superwoman before the onset of HH which hit me like a tonne of bricks after a hysterectomy!

Even though your fe level is only 250, and probably increasing as you are in perimenopause, you are having severe symptoms for such a low level (bearing in mind that your TS% level is very high), it might do you good to get your levels down to less than 30 to get the iron deposits out of your organs.  Good luck with that, as I expect your dr will be resistant.  But as he has put you in the hands of a haemotologist, he hopefully knows better.

QUICK-FIT - I use Nizoral 2% shampoo to get my hair to regrow again.  Leave on for 5 mins and do not use a conditioner.  I find it has been successful.

8

HH can sometimes result in Porphyria cutaneae tarda (PCT) with skin lesions, abdominal pain and depression.

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Thank you for this. The rash on chest and neck had skin lesions, but now has moved to lower legs and is more like hives. Still waiting for venesection to begin. 

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hi all i am new to this as only got told by my doctor last week that i have haemochromatosis and i have  a rash and it is awful itchy but i get dizzy alot i dont know anything about bloods or levels they should be at and well o be honest i do not know what to expect as it keeps going on the doctor has not giving me anything for this and told me in a phone call she did say she would get back to me when she knows what she is dealing with but has not and i dont know what i can do

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Hi Sharon, I understand the new feeling well. I was diagnosed in January after unexplainable itching, rashes, joint pain, phenomenal fatigue, and blood letting only got underway over the past couple of months. I must say I feel psychologically so much better now - the haematology nurses are brilliant and again psychologically it feels good to be getting rid of some of the excess iron.  I don't know about dizziness, but from what I've heard and read, it seems perfectly possible that it's connected to your haemochromatosis. There's a programme that will discuss haemochromatosis scheduled for broadcast this eve on BBC Radio 4 at 9pm which could be interesting and informative. I honestly understand the turmoil you might feel and can honestly say that eventually you feel calmer about it. Happy to listen to your worries and share stories. 

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Hi moodyali,

my iron saturation levels are at 90% but my ferritin serum is at 195.  I'm post menopausal & for the last 2 years have had depression along with muscle weakness, joint pain, hair loss, and a terrible rash around my eyes & neck with swelling.

I've been complaining of symptoms to my doctor who just kept testing me for lymes disease which were negative. I chalked my symptoms to menopause & thought I was just having a rough time with the changes.

I finally went to an endrochrinologist for my excessive hair loss & he tested my iron thinking I'd be anemic, but to his surprise my levels were extremely high. 

My mother had passed away 2 years ago from liver cancer from her non alcoholic chirrosi.  She also had diabetes, high blood pressure and severe arthritis which didn't begin until her late 60's. We never knew why she had these health problems when she was always so heathy. We now believe she had HH that was undiagnosed. Perhaps she was my guardian angel that lead me to finally get the diagnosis when her doctors had all failed her & never even tested her iron. 

I'm waiting for my genetic test to confirm I have HH but the hematologist is certain I have it.   My siblings are all now getting tested as well & sister already got confirmation she is a carrier. 

I'm finding doctors have limited knowledge of all the symptoms since this isn't a common disease with lots of patients to compare symptoms.  

8 years ago I was diagnosed with Meneire's disease with symptoms of blurred vision, vertigo, headaches & foggy brain.  Ironically my mother had vertigo for years following menopause but doctors told me this disease is not hereditary.  Now I realize it was the HH that caused her vertigo as it has caused mine.

I truly feel that everyone is different, depending where the iron levels settle or react in your body, therefore symptoms can vary. I seem to find more common symptoms in these type of blogs between patients than from doctors. Listen to your body, you know better than the doctors do. 

Just curious if anyone has had any success with hair regrowth once treatment begins?

 

13

Hi

Please don't be shy, we are all in this together and we have all had some issues with healthcare providers, it would seem not enough is known about this condition. I have experienced a rash but it comes and goes. If it's not HH then your Dr should be able to tell you what IS causing your rash.

I have been too complacent and accepting of Dr's I assumed they knew it all now have damaged thyroid and other issues because they never considered HH.

14

New hair started regrowing after using Nizoral 2%, leave on for 5 mins, rinse and do not use hair conditioner.  A spray on after treatment is ok but not on the roots.

I usually do a prewash of hair cleansing creme.

I still lose lots of hair all the time, but it is offset by new growth.

 

15

Me too I have rash all over my body driving me crazy I am convinced it's to do with iron overload!

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I posted yesterday about HH. Will be seeing a specialist tomorrow. I have a rash on the inner joint of the elbow and on the wrist. Will tell you more on thursday good luck

17

One of my symptoms was itchiness for years without a rash.  Ferritin went from 1300 to 30 within 2 years with Saturation % from 0ver 80 to just 12 as of now.  I am confused as to whether 12 is too low for saturation %

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One of my symptoms was itchiness for years without a rash.  Ferritin went from 1300 to 30 within 2 years with Saturation % from 0ver 80 to just 12 as of now.  I am confused as to whether 12 is too low for saturation %.    I read that the only iron that one gets in spinach is the sand that might not have been washed out.  Also we need to remember that spinach is also high in magneseum which I believe keeps the iron down.

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Hello Blood Brothers and Sisters,

Diagnosis has been a treaty business.  I, too, went to doctor's for many years before getting the diagnosis of hh.  I never went specifically for my fatigue as I was in my early 50's and just thought it was part of menopause.  I had joint and muscle pain, also.  I was also seeing doctors for over 3 years for an itchy rash on my neck, chest and forearms.  Never received a diagnosis but after several venesections the rash got better.  It has left scarring from the blisters, etc.  When I returned to my dermatologist for my annual checkup and I told her about my hh diagnosis she told me she realized my rash was caused by PCT, Porphyria Cutaneous Tarda.  A rare condition that affects the blood and liver (you can find on google).  The treatment is also venesections.  Those with a rash, please check this out.  It can carry serious liver problems also if not treated.  The good thing is the hh treatment has been helping mine.  Also, now I know if I start itching it is definitely time for a blood draw.

Another thing I have noticed is if i drink alcohol I get the itching within 15 minutes.  Must have something to do with the liver processing.

Sincerely, ck