symptoms

I was diagnosed after a pregnancy last year and started treament in Feb 09. I am 3o. I feel worse now then i have ever in my life. I have veneysections done every other week. I am continually run down and drained. I have been told that this will be a long process. Everytime i go and have my previous level results printed it comes back that they have goneup then down a little and then back up even higher again. It seems a vicious circle which is never ending. I have been told that this is 'normal' . ANyone have the same experience? Fed up!

Hi after years of symptons, i was eventually diagnosed with HH i,ve done 4 months of weekly veneys, and my iron levels are now back to normal, but i still feel lousy,fatigued, drained etc i also feel quite breathless aswell, infact to be honest i feel much worse since i got the blood removed than i did previously,im hoping that things may improve in a few weeks or months time, after all it was quite an ordeal having the veneys, it floored me every week, and i felt ill. I just hope i cant get back to some normality soon, and live an active life again...ps i,m also Fed Up! new mum & Ady.

Frankie

Hi all, just had my 8th pint of blood removed, just turned 40 and was diagnosed in april/may 2012. my father is the carrier and suffers no symptoms and his iron levels are fine, i have 2 younger brothers 29yrs and 35yrs, one has it and the other is waiting to be tested. my levels were 859 and i was told the target is to reduce to 50 via 12 pints out. i get a pint out every fortnight and i drop a pint in less than 5mins. the hospital tell me to avoid breakfast cereal as its loaded with iron, however like frankie and new mum & ady i feel worse every week. i have lost nearly 2months wages due to this faulty gene but if it saves premature death i should be gratefull. i have now got really sore legs and my back aches wen i sit down and im so weak im struggling to open a pkt of crisps or spark a lighter or remove plug sockets. feel about 80yrs old and depression is worse than before.i heard that a b12 injection will make me feel like a new man but my doctor is not entertaining me wen i mention it. i bought b12 tablets at £7 for 100 but the only change i notice is urine that glows in the dark lol. my last blood result was 113 so thats another 2 pints out so im expecting to feel 18 again soon. good luck all and i hope you all feel better soon. b12 injections are what im fighting for so if i get any luck tomorrow 21st sept 2012 at the doctors i will let you all know,

quick-fit

isnt it IRONic

Good Luck quick-fit today, i didnt know anything about the b12 injections, so yeah please let us know how you got on. My doc said i have Compound HH and that i received a dodgy gene from each parent so seems i was doubly unlucky and that im quite a rarity,hope i live long enuff to tell the tale, my feritin levels were 1700 to start with, then oddly after 1st veney they went up to 2100 and then plummeted quite sharply, after 12 pints the hospital actually left me slightly anneamic and i,m now down under 100.My brother and sister were tested and both are fine, i go back to the hospital first week in November for a blood test to see if its creeped back up and if i gotta be drained off again, workwise i,m now on sickness benefit, i had a manual job and i just could not hack it anymore, not a chance,i gotta go to bed a couple of times a day for a lie down especially mid afternoon to recharge my batteries so its been a life changing experience for me, im now 51 and sometimes feel 100. i,m also suffering from anxiety, depression and this seems to be a common sympton also, this really is a nasty illness, lets hope we all get sorted soon and can get back to living a normal life,

ATB Frankie

Hi frankie, thanks for your reply and sorry to hear how much its hitting you, your levels were double mine, Well the doctor told me my b12 levels were fine in march but she has totally disregarded that i have had 8pints removed between may till sept so no joy again. must cost to much lol im due back to work on wed and i dont feel im ready but i am being threatned with eviction due to rent arrears so i have no option but to return to my 60hrs a week constant nightshift job, its all driving so tiredness is not an option. i dont think i will last long if im still feeling so goosed. Trying to get housing benefit arranged but not sure if i`ll qualify.

good luck to you in november and im sure this iron is better out than in. things will get better so keep the faith and keep in-touch.

ATB quick-fit

Hi quick-fit, Really do hope you get things sorted, i dont know how you could even consider working 60hrs nightshift, I,m goosed just strollong up to the local shop for a morning paper, but suppose, if your inbetween a rock and a hard place, your options are somewhat limited But i,m sure if you went on sickness benefit you would be entitled to housing/council tax benefit etc etc, after all you are ill and the system is there for people like us (workers) who through no fault of there own have become too sick, to be able to continue in their employment . Take it easy mate, im sure things will work out o.k in the end.

Best Frankie

Are you guys still going? If you have blood type A, you will probably have a problem with B12 as you will have problems absorbing it from food and supplements. B12 injections are the go. But you will need to get a blood test first to get them.

Also, what is the lowest you were venesected to? A haemotologist will bring you down to <50 to get all the toxic iron out of your organs. drs, and it seems nurses have a say in the uk, are usually not aggressive enough. you should be asking for copies of all your test results so you can find when you felt best. my optimal level is 34. at fe level of 56, i am super fatigued, every bone and muscle aching, and suffering arrythmia, as my ferritin iron seems to make a bee line for my heart.

whoever monitors your ferriting iron and ts% levels should be monitoring your hb and do a test first to make sure you have rebuilt up your red blood cells before the next venesection. that will stop you getting anemic.

go to iron disorders institute org, go to forms, click on hemochromatosis reference chart (2.27mb), pag2/2 will tell you what your levels should be brought down to, and a list of organs that haemochromatosis affects. print it off and take to your dr.

we have to educate ourselves in order to educate the drs. good luck.

let us know how you have gone. do not give up. the rest of us care.

to="" get="" all="" the="" toxic="" iron="" out="" of="" your="" organs.="" drs,="" and="" it="" seems="" nurses="" have="" a="" say="" in="" the="" uk,="" are="" usually="" not="" aggressive="" enough.="" you="" should="" be="" asking="" for="" copies="" of="" all="" your="" test="" results="" so="" you="" can="" find="" when="" you="" felt="" best.="" my="" optimal="" level="" is="" 34.="" at="" fe="" level="" of="" 56,="" i="" am="" super="" fatigued,="" every="" bone="" and="" muscle="" aching,="" and="" suffering="" arrythmia,="" as="" my="" ferritin="" iron="" seems="" to="" make="" a="" bee="" line="" for="" my="" heart.="" whoever="" monitors="" your="" ferriting="" iron="" and="" ts%="" levels="" should="" be="" monitoring="" your="" hb="" and="" do="" a="" test="" first="" to="" make="" sure="" you="" have="" rebuilt="" up="" your="" red="" blood="" cells="" before="" the="" next="" venesection.="" that="" will="" stop="" you="" getting="" anemic.="" go="" to="" iron="" disorders="" institute="" org,="" go="" to="" forms,="" click="" on="" hemochromatosis="" reference="" chart="" (2.27mb),="" pag2/2="" will="" tell="" you="" what="" your="" levels="" should="" be="" brought="" down="" to,="" and="" a="" list="" of="" organs="" that="" haemochromatosis="" affects.="" print="" it="" off="" and="" take="" to="" your="" dr.="" we="" have="" to="" educate="" ourselves="" in="" order="" to="" educate="" the="" drs.="" good="" luck.="" let="" us="" know="" how="" you="" have="" gone.="" do="" not="" give="" up.="" the="" rest="" of="" us="" care.="">

whoever monitors your ferriting iron and ts% levels should be monitoring your hb and do a test first to make sure you have rebuilt up your red blood cells before the next venesection. that will stop you getting anemic.

go to iron disorders institute org, go to forms, click on hemochromatosis reference chart (2.27mb), pag2/2 will tell you what your levels should be brought down to, and a list of organs that haemochromatosis affects. print it off and take to your dr.

we have to educate ourselves in order to educate the drs. good luck.

let us know how you have gone. do not give up. the rest of us care.

>

Hi Sheryl, thanks for your message. My B12 levels where fine so it was back to the drawing board. I found on-line that low testosterone can be linked to HH. So being a male and reading the symptoms i immediatley became concerned.

My doctor laughed wen i asked to have my testosterone level checked but a week later told me i was right, my levels where very low. So 3 mths later, i can confirm that my own personnel circumstances have greatly improved by using testogel on a daily basis.

As i said earlier this is a male hormone so i advise females to perhaps get estrogen levels checked ??. Maybe i have other problems in my endocrine system caused by this iron overload thats made my testosterone levels low. I believe it was low testosterone that i have had all along but the doctor found the high iron levels and acted accordingly. So a bit of luck at my end and also i should report 2 other family members on my dads side have now been confirmed as HH. one is my younger brother 30yrs old and the other is my cousin 35yrs old both being drained fortnightly at present. Hope you are all well and any replys will be answered. take care and dont give up.

Hi Quick-fit Braveheart - (did you ever watch Mel Gibson in the Mad Max movie series?)

I am glad you cottoned on to testosterone. I usually go on about it and end up writing a book. As my husband is homozygous H63D and also got Hodgekins Lymphoma, he suffered very low testerone symptoms, and tried to put it down to his age which I disagreed with - ending up growing man-boobs so off he went to dr. Low levels of testo do cause fatigue, weakness, depression too. Some of this was alleviated but B12 made the most marked difference. He did need both, so maybe when he was finally taking both, it all came together. After trying the gel, he has now moved onto an injection every 3 months.

And yes, when I talk about Haemochromatosis with women, I do go on about reduced oestrogen too. Most haemo symptoms start after menopause whether natural or surgical, but rarely would a dr think of perimenopausal symptoms being caused by Haemochromatosis because maybe their ferritin irons levels are yet not high enough to make a dr look - that is, if the drs have done that test!

I was reading long posts about some women's perimenopause and menopause symptoms, their symptoms sounding too much like Haemo. I posted "Please everyone - ask to be tested to Haemochromatosis" and did a short explanation of it. I think it went over like a dead balloon and no one has picked it up.

I hope Frankie has discovered this.

Hi folks, very pleased to have come across this discussion, particularly the testosterone issue raised by Quick-Fit. Not only do men not really seem to discuss HH - perhaps that's just a gender thing - but when you do get guys on the subject, we are exceptionally coy about the libido side of things. Again that might be both a gender matter as well as it being a very personal matter that reveals a vulnerability and exposure to being less of a man.

Nonetheless I have been scratching around trying to find out how much low testosterone contributes to symptoms of HH. Certainly one of the myriad of things that initially took me to my doctor, after convincing myself that 6 months of excessive fatigue, joint pains, muscle aches, low mood, irritability were not just the result of overwork and age (just short of 50), was a profound drop in sexual interest, amongst other things (as it's a public forum perhaps better to keep the discussion broad based).

My GP did do a T level at the time, which was "low/normal" i.e. not below the low end of normal but in fact was just 0.2mmol/l above it, and therefore "normal". However the whole HH matter took off, inevitably, and of course important to have got that side of things addressed. Having mentioned the T result I was told to wait until we had a formal diagnosis before addressing this. I really got the impression that we were never going to relook at this, as the result was "normal", despite having a very dramatic change in sexual functioning. Naturally I have wanted to get a formal diagnosis of whatever, and turned out to be HH, and then to start treatment - and that took 6 and half months to get to this point, and have been having venesection for 2 months.

I spoke with my hepatologist about libido, and he said it will get better. Sadlly he had no time frame for this, or at what level of ferritin 'things' would get better. Moreover there was no "this will get better, but if it doesn't in x months or by by the time your ferritin is y mcg/l, then there is something we can do". I am all for optimism, but optimism with an action plan would be preferable.

I am going to go back and get a repeat T level but do have a distinct feeling that I will get a mild rebuttal, as Quick-Fit mentioned he had. I guess my fear is that the level will again be just in the normal range, and thus I will get told it is fine and not be offered any treatment, or be told it will get better in time. Quite aside from the libido side of things, I just want to feel well again, and i can't help thinking that my T levels are implicated in this.

It seems that testosterone replacement is a touchy subject with doctors who it seems are brought up on the notion that it is all to do with body building steroid abuse and aggression, when really it is all about well being, being and feeling masculine, assertiveness and confidence, as well as some biochemical parameters. There still seems to be a fear about instigating a prostate cancer, though I think there really is little evidence for that now. Also I think there is the perception that this is all about lifestyle and a declining T level is part of getting older, so we should just put up with it. Furthermore as treatment is life long there is an NHS cost implication. My perspective is that if I were hypothyroid, or had subclinical hypothyroidism, there would be a desire to follow that up and get me treated even though again that would be life long treatment as well.

Very aware that an open forum is perhaps not a place where guys wish to discuss certain personal details of their HH, but would be delighted to to know of other guys' experiences of dealing with the libido etc side of HH, whether /when it gets better or whether they have had to resort to TRT, and any improvements they have had from that, also any difficulties they have had getting their doctors to get on side with dealing with T levels or libido symptoms. It seems hard enough getting doctors to understand HH let alone the matters peripheral to iron overload.

Very happy to be direct messaged about this as well.

{Q-Fit: Would you mind a message?}

Regards to all in the HH community

I can't believe i have found this forum and it is actually active!! I'm so happy to finally have someone to talk to about this, my friends and family dont understand how bad things are and act like its nothing to worry about.

My name is Mark i am 32 and i was diagnosed about 4 weeks ago i have had one pint of blood removed so far and i will be going back every three weeks. My iron saturation was at 85% and my ferritin was 850. My symptoms have been fatigue to the point where i could literally sleep anywhere at any time, my wife won't let me drive anymore as i start to fall asleep after about ten minutes! Aching joints, breathlessness, mood swings can be terrible, anxiety and more recently which worried me slightly i have been having what feels like strong palpitations followed by feeling dizzy. Obviously before i was diagnosed i was scanned, xrayed, and prodded and poked so i'm not worrying about it being anything else as everything was clear. Can this all really be down to HH?

Hi Mark, pleased that you have found this forum; I've used this patient website for ages and never knew or thought to look for discussions or a forum. But really, like you, I have been trying to make sense of it all, and in many respects wanting some idea that what you are feeling is what everyone else is feeling. I very much get the impression that HH is a disease of variable severity within the context that there are common symptoms that most people suffer with, just some worse than others. Much like you it seems I have been through the medical mill of every investigation under the sun, even a short period when there was a search for a hidden cancer to explain blood tests and symptoms.

Finally we have landed with HH, and I guess good that there is a diagnosis rather than unwell for an unknown reason.

Everyone is different and the approach of doctors seems to be different. I see a hepatologist and am having quite aggressive venesection - weekly with an initial plan of 20 weeks, depending of blood progress. Have had 7 x 500ml so far with a missed week as I was too anaemic for them to be happy to do that week. My initial ferritin was over 1000, which seems to be the magic number in terms of end organ damage, particularly cirrhosis. That may be the reason for going in so aggressively with venesection. While it is difficult to make a judgement about your own treatment but with your numbers venesection every 3 weeks seems quite relaxed. Mind you weekly is quite a trial, having to cancel work and getting to the hospital and the rest of the day being wipes out with more exhaustion. It is too soon on my own treatment experience to give you an informed opinion about the pace of recovery - there are others here who are far more personally knowledgable about their own experiences so hopefully someone might post their experiences for you.

You don't mention about symptoms I was alluding to in my earlier post, but if some of those symptoms are pertinent to you then you might want to ask about doing a testosterone test, which your GP can arrange. If you do I'd be interested what the response was, and indeed whether you were offered treatment or like me told that it will get better! If you don't wish to discuss in open forum would be very happy for you to direct message me.

Do hang in there Mark; no one knows what it is like, and I'm told it does get better.

Still early days for me too, so will keep you posted.

Regards

CF

Hi Clay, you have written 2 very good posts and i am more than happy to share my HH experience with you all. After all we are all blood brothers and sisters, so to speak lol.

I would say you Clay are in the same boat as me. ie going to the doctors with a health issue and before they got to the main reason,found the HH and believed all our problems would go away once our iron levels were reduced to below 50. Well after 14 pints to date removed,i should be feeling 18 again lol ok 41 instead of 80yrs old.

I was referred to the hospital last week to get my adrenal glands checked by doing a synacthen test.

A synacthen test uses a special chemical to test how well the adrenal glands make a chemical (hormone) called cortisol. It involves stimulating the adrenal glands and then checking to see if they respond. Synacthen is another name for tetracosactide, the chemical used in the test.

I need to wait 6 weeks for the results so i will keep you all informed as soon as i find out.

I was also examined down below for any problems but this turned out all ok.

The doctor told me that because of my HH i would need to use testosterone replacement indefinetly. She even suggested an injection every 3 mths and also spoke about viagra.

I am still using the gel , oh dear forgot to use it today lol.

Ok thats that done, it only takes a few minutes(ring any bells) pun intended.

So Clay if and when your iron levels get below 50 i would pursue another test for testosterone if i were you.They say as we age it does drop and i also read that taking co/codamol over a long period of time also effects our testo.This applied to me as i was taking solpadol for about 6yrs due to the type of job i done i was always in agony.

Although i am now unemployed and i stopped taking solpadol to see if they where perhaps holding me back and adding to my fatigue.

Again that was a month ago and still feel as though i want my old blood back.

oh the doctor at the hospital advised me to stop smoking as im at more risk due to the HH and also because (T.R.T) think she means my blood will be thicker and more prone to strokes and heart problems. Not stopped yet but for once have taken the warning on board and i plan to attempt to stop in the near future. Again this may help my energy levels and my wallet, so need to make an effort.

thanks everyone who reads and posts, as the doctors dont give much away so we need to keep each other updated.

yours faithfully Quick-Fit.

Hi Q-F, thanks for the post and the supportive words. It does sound like you have had quite a time of it all, 6 years of needing solpadol can't be at all fun.

Really sorry you have lost a job due to HH; it is one of those illnesses where no one can see what is happening to you, a bit like depression I guess where you look fine on the outside and people think "just pull yourself together and get on with it". Easier said than done...

Also HH is one of those illnesses that people haven't heard of (generally) even as a concept let alone the symptoms. If you explain it to them there is the possibility that they just think you are workshy and putting it all on. If only they knew!

Glad that you have perked up with TRT though, but sounds as if they are concerned that iron has shot your pituitary gland and hence the synacthen test.

There are a few things I wanted to ask / discuss but they are really peripheral to HH and so in the spirit of keeping forum posts on topic perhaps I should message you. (I did start earlier but was trying to do on a hand held device and I am not sure if I sent it prematurely - it disappeared anyway, and I don't know if I can tell if I did send? Technology getting the better of me! I'll start over anyway)

Clay

Hi guys - I hope you don't mind a female butting in - see my earlier posts (4 & 5 Feb). Speaking from the experience of being a coordinator of a support group through which I counsel other HH people and have access to consult with drs and specialists , my personal experience with HH and also that of my husband who has HH, there is a fair bit of knowledge that I have acquired that I can pass on.

A good dr should test for HH when presented with low libido and impotence. It is a sign of HH, along with atrophy of testicles. Unfortunately, however, good drs regarding HH are far and few between. Infertility is possible as well. A male might have no other symptoms, but when an Iron Studies test is done, ferritin iron and TS% can be in the HH levels, as well as low testosterone. If you do not have any problems like prostrate to prevent it, good drs will also prescribe TRT as it is necessary for your good health. Prostate tests every year will keep any idea of any possibility of that event.My husband's father died from prostrate cancer which would put him in a high risk range, but regular testing keeps an eye on that. As relationship intimacy is also very important for people's health, a good dr will also prescribe viagra or cialis.

I have asked two different drs what does HH do to cause this problem. One answered iron overload effects the hypothalamus and the pituitary gland, and the other referred to the scarring in the cellular structure of the organs. Don't forget, although microscopic, iron is actually particles of metal with sharp edges which cuts its way through the cells and out again when venesected.

If your dr does not show any sympathy, empathy or respect for your problem, look for one that will - easier said than done of course. Word of mouth is the best - see if there is a support group near you, and contact your country's Haemochromatosis Organisation and ask them. Ask them if they can send to you some brochures that you can pass around to medical centres, pharmacies, health shops (very important for them to learn not to suggest iron tabs when a person complains of fatigue!), sports clubs, associations, etc that might open some windows of opportunities to you to discuss it with strangers and perhaps learn something new, e.g. best drs, etc.

I agree with Clay that Mark's venesection timing is not aggressive enough for his levels. My experience is that it should be at least weekly for a while. With reference to an earlier posting, see "Go to Iron Disorders Institute org, go to forms, click on Hemochromatosis Reference Chart (2.27MB), page 2/2 will tell you what your levels should be brought down to, and a list of organs that haemochromatosis affects. Print it off and take to your dr."

Sorry about long description but if I put in the URL it takes a few days for it to be approved before this response is posted. This information will help you take control of your treatment and know what is appropriate and what is not.

It is common for those who have not been diagnosed with HH to be totally disinterested in our plight. I am one of 5 children and only I scored the double mutation (homozygous). All the rest are heterozygotes and have no idea of what they are 'missing out on'.

Quite often in women, symptoms do not arise until peri/menopause when they stop menstruating (another form of venesection) and their bodies start iron loading. They are complaining of fatigue, reduced memory, brain fog, depression, joint pain, low libido, etc. and they are told it is just 'normal' menopause symptoms but it is NOT. Trying to tell some women to get checked for HH is just as difficult as they do not want to know. Eventually they will present with liver function problems or worse. If the females in your life have these complaints, please drag them off to the dr to get checked too!

Happy to answer any questions.