Symptoms worsened by alcohol??

Hi steveyraff, although you did not say what your ferritin iron and trans sat % levels were it sounds like you are sucking it (the iron) in at such a young age. Homozygous C282Y? You should have also had your Liver Function Tests done straight away and at least every 6 months since.

It sounds like you do have liver damage and this must be addressed immediately. You probably may not be able to drink alcohol again till your liver repairs, or you are a dead duck!

Are you on 3 monthly maintenance? Did you bring your fe levels down to <30 before you went on a maintenance schedule, and do stick to it. sounds problematic i know. is there a blood bank nearby - you might need a letter from your dr to give them the go ahead to venesect you. or perhaps a local pathology - once again a referral from your doc. i am speaking from australia though, so things may be different where you are.

after i was diagnosed (after a delay of 9 years which destroyed my health because my doc was in denial) (homozygous c282y), my son was tested at 22 years and found to be compound c282y/d63h with fe level of 772, then husband was tested and he was homozygous d63h.

if your liver was damaged, and there seems to be no doubt it is, you should be referred to a gastroenterologist. be assertive about your treatment.

and yes, fatigue, weakness, anxiety, depression are all part of the story. soon, loss of libido and impotence which i am sure you don't want, diabetes, heart disease, dementia, cancers, cirrhosis of the liver, liver cancer. is that enough to make sure you get regular venesections?

cancer thrives on iron, so we are prone to all sorts of cancer, helicobactor pylori (the bacteria for ulcers) thrives on iron. don't wait for your dr to find things, be assertive and ask for tests. check out the websites for 'haemochromatosis' and also the us spelling "hemochromatosis" - they seem to have more info. if necessary, find a young irish dr, they seem to be more up on haemochromatosis as 1 in 80 have haemochromatosis in ireland. one in 200 in the rest of the world.

please ask for a copy of your blood tests so that you can keep on top of it yourself, find your optimal level when you feel best, and constantly ask questions.

keep talking to us, as haemo people care.

before="" you="" went="" on="" a="" maintenance="" schedule,="" and="" do="" stick="" to="" it.="" sounds="" problematic="" i="" know.="" is="" there="" a="" blood="" bank="" nearby="" -="" you="" might="" need="" a="" letter="" from="" your="" dr="" to="" give="" them="" the="" go="" ahead="" to="" venesect="" you.="" or="" perhaps="" a="" local="" pathology="" -="" once="" again="" a="" referral="" from="" your="" doc.="" i="" am="" speaking="" from="" australia="" though,="" so="" things="" may="" be="" different="" where="" you="" are.="" after="" i="" was="" diagnosed="" (after="" a="" delay="" of="" 9="" years="" which="" destroyed="" my="" health="" because="" my="" doc="" was="" in="" denial)="" (homozygous="" c282y),="" my="" son="" was="" tested="" at="" 22="" years="" and="" found="" to="" be="" compound="" c282y/d63h="" with="" fe="" level="" of="" 772,="" then="" husband="" was="" tested="" and="" he="" was="" homozygous="" d63h.="" if="" your="" liver="" was="" damaged,="" and="" there="" seems="" to="" be="" no="" doubt="" it="" is,="" you="" should="" be="" referred="" to="" a="" gastroenterologist.="" be="" assertive="" about="" your="" treatment.="" and="" yes,="" fatigue,="" weakness,="" anxiety,="" depression="" are="" all="" part="" of="" the="" story.="" soon,="" loss="" of="" libido="" and="" impotence="" which="" i="" am="" sure="" you="" don't="" want,="" diabetes,="" heart="" disease,="" dementia,="" cancers,="" cirrhosis="" of="" the="" liver,="" liver="" cancer.="" is="" that="" enough="" to="" make="" sure="" you="" get="" regular="" venesections?="" cancer="" thrives="" on="" iron,="" so="" we="" are="" prone="" to="" all="" sorts="" of="" cancer,="" helicobactor="" pylori="" (the="" bacteria="" for="" ulcers)="" thrives="" on="" iron.="" don't="" wait="" for="" your="" dr="" to="" find="" things,="" be="" assertive="" and="" ask="" for="" tests.="" check="" out="" the="" websites="" for="" 'haemochromatosis'="" and="" also="" the="" us="" spelling="" "hemochromatosis"="" -="" they="" seem="" to="" have="" more="" info.="" if="" necessary,="" find="" a="" young="" irish="" dr,="" they="" seem="" to="" be="" more="" up="" on="" haemochromatosis="" as="" 1="" in="" 80="" have="" haemochromatosis="" in="" ireland.="" one="" in="" 200="" in="" the="" rest="" of="" the="" world.="" please="" ask="" for="" a="" copy="" of="" your="" blood="" tests="" so="" that="" you="" can="" keep="" on="" top="" of="" it="" yourself,="" find="" your="" optimal="" level="" when="" you="" feel="" best,="" and="" constantly="" ask="" questions.="" keep="" talking="" to="" us,="" as="" haemo="" people="" care.="">

after i was diagnosed (after a delay of 9 years which destroyed my health because my doc was in denial) (homozygous c282y), my son was tested at 22 years and found to be compound c282y/d63h with fe level of 772, then husband was tested and he was homozygous d63h.

if your liver was damaged, and there seems to be no doubt it is, you should be referred to a gastroenterologist. be assertive about your treatment.

and yes, fatigue, weakness, anxiety, depression are all part of the story. soon, loss of libido and impotence which i am sure you don't want, diabetes, heart disease, dementia, cancers, cirrhosis of the liver, liver cancer. is that enough to make sure you get regular venesections?

cancer thrives on iron, so we are prone to all sorts of cancer, helicobactor pylori (the bacteria for ulcers) thrives on iron. don't wait for your dr to find things, be assertive and ask for tests. check out the websites for 'haemochromatosis' and also the us spelling "hemochromatosis" - they seem to have more info. if necessary, find a young irish dr, they seem to be more up on haemochromatosis as 1 in 80 have haemochromatosis in ireland. one in 200 in the rest of the world.

please ask for a copy of your blood tests so that you can keep on top of it yourself, find your optimal level when you feel best, and constantly ask questions.

keep talking to us, as haemo people care.

>

Thanks Sheryl.

I don't need to be scared into going for a venesection. I have researched all about it and I am fully aware of all the side effects and complications. I got a liver function test done at the start of my treatment a few years ago (when I had been drinking a lot more carelessly) and it came back perfect. No problems there. It may be different now of course.

I had been going every week or so to a drop in centre they set up. As my various levels would drop, it'd be every 2 weeks. Then when they returned to normal I'd get a month or sometimes 2 months break before starting up again. I'd been doing this for about 2 years.

I've only stopped completely 6 months ago as they stopped the drop in centre with out warning and kept saying it would return shortly. So I kept waiting, and it never did. They keep sending me reminder letters to go get it done in a hospital that is 2 hrs away. Its hard for me to organise this with work etc. But I am trying my best now that I have been having problems.

Yes, every week that I went I would take my records book with me and they've all my levels in it. As far as I recall, ferritin levels etc weren't sky high or anything. They were always quite above average. My mothers was always much worse. I will have to find my record book tomorrow. It's late here.

I think this week I'll just go to my local docs and get a blood test taken - I think they can send it away for me to have all the necessary levels looked into.

I do remembering seeing that anxiety discussion - if it's the same one that I think you're talking about I participated in that one.

I also suffer from anxiety. I have since I was a child but it worsened during my second year of University. A lot of it had to do with my practicum, but that was the same year that I first went to the doctor complaining of fatigue.

That was when I was 20/21 and I'm 24 now. I ended up going on medication for six months because I just needed immediate help with it, and that also correlated with when I was getting them every two months or so, so my levels were still pretty high. My anxiety is much more manageable now, and now I'm at the every 4-6 month mark. I was very lucky that I'm proactive when it comes to going to the doctor when something is wrong with me or else who knows how long it would've taken to get a diagnosis of Haemochromatosis.

And now that you mention it - when I was 18 I could pound back drinks. On my grad night I had 7 different drinks in a matter of about three hours and I didn't even get a hangover the following morning. I didn't feel sick at all. Now I don't drink as much but I find that I can feel it even if I've only had one drink. So now I wonder if having iron overload, whether you already have liver damage or not, affects your ability to drink.

I do know that you are meant to watch how much you drink because the more alcohol you have, the more your body absorbs iron, which is the opposite of what everyone on this board wants to have happen. So sheryl37154 is definitely right.

And yes, please do go get your next phlebotomy soon and get everything tested again to make sure that your alright. And with your horribly "hangovers", definitely mention that to your doctor/specialist. You need to make sure that your liver and other organs are fine. But please also note that some damage can be reversed, so don't freak out unless you have reason to. As an anxious person myself, I sometimes cause myself more anxiety when I think about all of the things that could possibly be wrong with me and that isn't helpful.

Just take it one step at a time. First, book your next phlebotomy asap and go to your doctor. Then take it from there.

And yes! As sheryl37154 said, we Haemo people care. So if you need to talk more about this, or hell, even your anxiety, talk to us

Stevey, I hear your problem and coming from Australia I probably do not understand it so much. Do you live in a small village where there is not too much in health infrastructure? I know in our small towns, people have to travel hours to a hospital, blood bank, (local pathologist won't do venesections unless a dr present), some gp's will do venesections.

Given the problem, will your local doc do your venesection?

Talking to Megan in another discussion, I asked her if her anxiety could be arrythmia. Haemo causes damage to the heart and arrythmia (rapid/irregular) heart beat. I have it often when my fe level goes up to 56 now (horrifyingly). My optimal level is 34.

You may not actually feel it, as a cardiologist told me most people do not feel real arrythmia. But you could feel your heart banging away or even just fluttering very rapidly when you lie down, esp on your right side with your arm across the left side of chest. Beta blockers and calcium channel blockers are disastrous for people with Haemo - it dilates the blood vessels and allows the iron particles into the brain. (Experienced it!)

However, other signs I have noticed are a pinching mid chest (not a big pain), sometimes a 'ping' when the heart skips a beat, and feeling of queasiness. This feels like anxiety. Not necessarily all at once. That is when I put on my heart monitor which confirms my feeling. It is a strap put around the chest, which transmits your heartbeat/count and irregularity to a wrist watch device.

Adrenal glands can also be damaged and cause rushes of adrenalin. A reduction in testosterone will cause arrythmia, fatigue, weakness, too.

Who monitors your levels? Were you deironed right down to at least less than 30? I don't understand the irregularity of your venesections (when they were happening). They should be much more regular - not a couple every couple of months. The idea is to build up to a maintenance program of once every 3 months after you have had all the iron removed from your organs.

Perhaps the clinic only visited every so often and you had to fit in with them.

But if you knew it was only once every three months, that could allow you to organise a day off to go to the nearest centre (2 hrs away) to have a venesection, rather than lots of days off because you are so unwell (maybe you have not had to yet but it will come).

I hope something in this helpful to you. After years of experiencing Haemo, as well as hearing other experiences, I am still learning. We are all still learning as it is so different for everyone and sometimes, we can only learn from experience.

Cheers

Sheryl, this is very interesting that you mentioned the chest thing. I am finding the more I read about this condition, the more seemingly unrelated issues I've went to the doc about over the years actually seem to all have Haemochromatosis is common. Just recently, I went to the doc about occasional, but persistent chest pains. He checked me out, and everything seemed fine so he concluded it was probably just muscular pains. I have a very healthy, low cholesterol diet. I guess my condition would make sense.

I was speaking to my mother today about it as she was diagnosed around the same time. I told her how I never put two and two together because I never complained about any of this before I was diagnosed, so why should it be my condition that is responsible now? She laughed! She said since my early to mid 20's I've been complaining about fatigue, weakness, lethargy etc.

Lately I've definitely felt worse than ever though. This last few weeks its been horrible. My limbs are all weak and like jelly. I also wonder - if I feel it more now since being diagnosed as maybe my body was becoming used to the lower, normal levels of iron offered by my treatments, and now that I stopped its a more noticeable difference? ?

To answer your questions:

Yes - I live in rural Ireland. In the countryside. But I have a very good local health centre in a village about 10 minutes away. It is just GP's though, no specialists. My local hospital is in the nearest big town, about 30mins drive away. They set up a venesection clinic specially for Haemochromatosis patients due to increased awareness in recent years. After my initial diagnosis I was referred to the hospital to speak to a specialists on Haemochromatosis. He came from the city once a month I think. He just gave me a very quick run down on what I had etc. Gave me a leaflet - thats about it.

When I go for my venesection they are very good. They ask me how I've been feeling, they do a blood test and check for liver function, iron levels etc, blood pressure checks. When they find my levels the head nurse determines how often I must keep coming back until my levels are down to a satisfactory level where I am allowed to go on a break for a month or two I think it is.

From my record book I can see I started 28th Dec 2011. Throughout 2012 I had about 15 venesections.

2013 is when the problems started. My mother and I are considering going to my local doctor first thing Monday and complaining. Try to get him to send the complaint up the line. I've only been about 4 times. As I said, last time I went the nurse said my levels were all quite high so I'd need to come back a few times in quick succession to get it down to a safe level. I went once only. Then the clinic kept being put off. Then once or twice I was referred to a hospital over 2 hours away with little notice and couldn't make it. Now, apparently, its back on but they haven't been sending me letters to come in like they normally would.

I am taking your advice and going for the firm approach, making sure I get my treatments started up again- especially since this is the first time in my life I can safely say I feel terribly under the weather, with symptoms that seem to be associated to Haemochromatosis.

I'm still not totally aware of the language and what the results are. I can see at my first ever treatment at the end of 2011 my log book says: "Hb: 14.6,SeFn: 408, TS: 46" in the notes it says R/V 2/52.

Unfortunately, for my last visit, the one where she said my levels were very high, I forgot my log book! So I have no idea how high they were sitting when I left it. One of the lowest readings I had a few months prior to stopping was : "Hb: 15.0SeFn: 132, TS: 62" r/v 3/12.

Thanks for your help Sheryl.

Stevey, I am so glad to hear that you are your mum are going to see your local dr to get some action. This is an ongoing national tragedy for Ireland if this lack of available treatment is everywhere.

The stats I have seen is that one in 80 have Haemochromatosis in Ireland. About one in 200 elsewhere. A lot of you must be dying young if left untreated. It can be nothing serious, if diagnosed young and treated young (and forever) before iron stores in organs and does serious damage.

There must be a some others in your area who have haemochromatosis and therefore having the same problem with treatment. Your boss may even have it, and if he does, you would get some empathy about having to take time off for treatment.

Is your dad still in the picture? He has passed down one of his Haemo genes to you as well as your mum. You don't mention it, but have you had a genetic test, and do you know what faulty genes you inherited to get Haemochromatosis.

Ask around and maybe you can find or start a Haemo Support Group. It is good to discuss as you will learn from each other. Drs usually only have general info. I advertised in the "Community Clippings" part of our free newspaper, tv, radio, posted flyers to hospitals, drs, pharmacists, pathologists, health shops, local shops, any noticeboard I came across. The most successful ad is the one in the newspaper. (All free by the way). I also searched out a free venue that could be used - in our case a library.

There are strength in numbers to support the cause to get local treatment.

Your levels are not extremely high, but your lowest reading is not low enough to deiron you. In Australia, it is not a nurse's responsibility to decide how often you should be venesected. I have found that my haemotologist is the most aggressive, but even gps who take it upon themselves are not aggressive enough, and do not deiron to a low enough. It is easy enough to do, just keep an eye on your Haemoglobin (Hb). If should not go lower than 12.5. As a pinprick reading is usually done before venesection, it is easy to keep any eye on it.

First ever Serrum Ferritin (SeFn) 408 high for your age, and normal TS% should be <40. so="" yours="" was="" a="" telling="" high="" level="" then="" too.="" r/v="" sounds="" like="" every="" 2="" weeks,="" which="" sounds="" right="" for="" your="" sefn="" level.="" but="" it="" should="" have="" been="" exactly="" that,="" every="" 2="" weeks="" -="" not="" left="" for="" a="" month="" or="" two="" then="" do="" it="" again.="" your="" lowest="" reading="" sefn="" 132,="" was="" getting="" down="" but="" should="" have="" been="" brought="" down="" to=""><30, or at the very least for a less aggressive operator 50-75 according to the iron studies institute. ts% had risen to 62% which means you were absorbing a higher percentage of available sefn into your body. however, a r/v of 3/12 which sounds like once every three months was too soon to do that as you had not be properly deironed.

i will try to attach a link to a haemochromatosis clinical manager guideline for you to print off, read, and take to your doc. it is a us document issued by the iron disorders institute, and this was issued to me when i joined the haemochromatosis australia organisation. page 2 is the most interesting page for you.

http://www.irondisorders.org/websites/idi/files/content/854256/hhc%20all2011.pdf

if it is not successful, go to www.irondisorders.org/forms and click on hemchromatosis reference chart (2.27 mb). of course other charts are interesting too.

i may not have said it before, but it is often difficult to get a diagnosis for this in australia, despite its prevalence. drs are often in denial, not conscious of it, or just plain ignorant. i get a lot of phone calls asking for help, and then i direct the people to drs who are conscious of this disorder, and not only that, they don't try to treat it themselves but refer people to a haemotologist (who now has a waiting list unfortunately and myself and my husband have been squeezed out to go private). some are already diagnosed but getting unsuitable treatment.

if they cannot get a diagnosis, i have advised people to go and donate to the blood bank just to start getting the ferritin iron out of them. one fellow who lives in a rural area 2.5 to 3 hrs away, jumped in his car and went to the blood bank in my town. afterwards, he said it was the best he had felt in 22 years, and went home and washed his car which he had not done so for many years because he had been dragging himself around, extremely tired with body pains. he has since found he has liver damage from years of not being diagnosed and treated.

as i cannot go around telling drs what to do, the next best thing is to educate the patients about haemo so that they can educate their drs.

your mother must be having some awful symptoms too. let me know how you go.

cheers

or="" at="" the="" very="" least="" for="" a="" less="" aggressive="" operator="" 50-75="" according="" to="" the="" iron="" studies="" institute.="" ts%="" had="" risen="" to="" 62%="" which="" means="" you="" were="" absorbing="" a="" higher="" percentage="" of="" available="" sefn="" into="" your="" body.="" however,="" a="" r/v="" of="" 3/12="" which="" sounds="" like="" once="" every="" three="" months="" was="" too="" soon="" to="" do="" that="" as="" you="" had="" not="" be="" properly="" deironed.="" i="" will="" try="" to="" attach="" a="" link="" to="" a="" haemochromatosis="" clinical="" manager="" guideline="" for="" you="" to="" print="" off,="" read,="" and="" take="" to="" your="" doc.="" it="" is="" a="" us="" document="" issued="" by="" the="" iron="" disorders="" institute,="" and="" this="" was="" issued="" to="" me="" when="" i="" joined="" the="" haemochromatosis="" australia="" organisation.="" page="" 2="" is="" the="" most="" interesting="" page="" for="" you.="" [url=http://www.irondisorders.org/websites/idi/files/content/854256/hhc%20all2011.pdf=""]http://www.irondisorders.org/websites/idi/files/content/854256/hhc%20all2011.pdf=""[/url]; if="" it="" is="" not="" successful,="" go="" to="" [url=www.irondisorders.org/forms=""]www.irondisorders.org/forms=""[/url]; and="" click="" on="" hemchromatosis="" reference="" chart="" (2.27="" mb).="" of="" course="" other="" charts="" are="" interesting="" too.="" i="" may="" not="" have="" said="" it="" before,="" but="" it="" is="" often="" difficult="" to="" get="" a="" diagnosis="" for="" this="" in="" australia,="" despite="" its="" prevalence.="" drs="" are="" often="" in="" denial,="" not="" conscious="" of="" it,="" or="" just="" plain="" ignorant.="" i="" get="" a="" lot="" of="" phone="" calls="" asking="" for="" help,="" and="" then="" i="" direct="" the="" people="" to="" drs="" who="" are="" conscious="" of="" this="" disorder,="" and="" not="" only="" that,="" they="" don't="" try="" to="" treat="" it="" themselves="" but="" refer="" people="" to="" a="" haemotologist="" (who="" now="" has="" a="" waiting="" list="" unfortunately="" and="" myself="" and="" my="" husband="" have="" been="" squeezed="" out="" to="" go="" private).="" some="" are="" already="" diagnosed="" but="" getting="" unsuitable="" treatment.="" if="" they="" cannot="" get="" a="" diagnosis,="" i="" have="" advised="" people="" to="" go="" and="" donate="" to="" the="" blood="" bank="" just="" to="" start="" getting="" the="" ferritin="" iron="" out="" of="" them.="" one="" fellow="" who="" lives="" in="" a="" rural="" area="" 2.5="" to="" 3="" hrs="" away,="" jumped="" in="" his="" car="" and="" went="" to="" the="" blood="" bank="" in="" my="" town.="" afterwards,="" he="" said="" it="" was="" the="" best="" he="" had="" felt="" in="" 22="" years,="" and="" went="" home="" and="" washed="" his="" car="" which="" he="" had="" not="" done="" so="" for="" many="" years="" because="" he="" had="" been="" dragging="" himself="" around,="" extremely="" tired="" with="" body="" pains.="" he="" has="" since="" found="" he="" has="" liver="" damage="" from="" years="" of="" not="" being="" diagnosed="" and="" treated.="" as="" i="" cannot="" go="" around="" telling="" drs="" what="" to="" do,="" the="" next="" best="" thing="" is="" to="" educate="" the="" patients="" about="" haemo="" so="" that="" they="" can="" educate="" their="" drs.="" your="" mother="" must="" be="" having="" some="" awful="" symptoms="" too.="" let="" me="" know="" how="" you="" go.="" cheers="">

i will try to attach a link to a haemochromatosis clinical manager guideline for you to print off, read, and take to your doc. it is a us document issued by the iron disorders institute, and this was issued to me when i joined the haemochromatosis australia organisation. page 2 is the most interesting page for you.

http://www.irondisorders.org/websites/idi/files/content/854256/hhc%20all2011.pdf

if it is not successful, go to www.irondisorders.org/forms and click on hemchromatosis reference chart (2.27 mb). of course other charts are interesting too.

i may not have said it before, but it is often difficult to get a diagnosis for this in australia, despite its prevalence. drs are often in denial, not conscious of it, or just plain ignorant. i get a lot of phone calls asking for help, and then i direct the people to drs who are conscious of this disorder, and not only that, they don't try to treat it themselves but refer people to a haemotologist (who now has a waiting list unfortunately and myself and my husband have been squeezed out to go private). some are already diagnosed but getting unsuitable treatment.

if they cannot get a diagnosis, i have advised people to go and donate to the blood bank just to start getting the ferritin iron out of them. one fellow who lives in a rural area 2.5 to 3 hrs away, jumped in his car and went to the blood bank in my town. afterwards, he said it was the best he had felt in 22 years, and went home and washed his car which he had not done so for many years because he had been dragging himself around, extremely tired with body pains. he has since found he has liver damage from years of not being diagnosed and treated.

as i cannot go around telling drs what to do, the next best thing is to educate the patients about haemo so that they can educate their drs.

your mother must be having some awful symptoms too. let me know how you go.

cheers

>

stevey, I have responded but because I included a link to another website, it is still awaiting for approval. It hs been about 36 hrs now I think.

No worries. Its frustrating how long it takes comments to approve. I can see that its awaiting approval so its all good though. Thanks for letting me know

Hi both,

If a comment is posted at the weekend with a link it will take until the next working day to get approved. If you don't want to wait you can send each other urls by using the message facility.

Regards,

Alan

Emis Moderator

Thanks Alan, I appreciate knowing that.

HI Stevey, just had a skim through this thread and just wanted to go back to your original point about alcohol.

One of the myriad of things that initially brought my HH diagnosis to the fore was that I really couldn't tolerate alcohol, or more specifically spirits and to a lesser extent wine. I felt really very odd with any spirit, the jelly limbs is a decent description of this, I had palpitations and I think for some reason it alerted me excessively so that I could not sleep after any spirits. Having stopped all alcohol for 8-9months now (as soon as "haemochromatosis" came into the differential diagnosis) I realised that all alcohol was doing the same to me, but just to a lesser extent with wine and such.

I don't seem to have any biochemical liver damage, and having had a liver biopsy it seems to be histologically fine too, but I wonder if I was not processing alcohol well through my liver, and getting odd intermediate metabolites which made me feel decidedly odd.

Not sure I have a definitive answer for this, as my hepatologist says he doesn't know, and I've not found any journal papers that have looked at this. Sometimes we have to accept that medicine doesn't necessarily have the answer to all our questions. As a result I take a pragmatic approach and just don't drink any longer.

Glad that you have managed to get back into a venesection program. You are fortunately to have had an early diagnosis so that you can address your iron overload at an early stage.

Just by way of nomenclature r/v is medical short hand for "review" - not sure how things work in Ireland, but in the UK (in hospital care at least) r/v 3/12 means 'plan to review in 3 months' but in practice ends up being "review any time after three months, when the patient phones up asking when the appointment is, because more than three months have passed with no sign of an appointment forthcoming"!

I think my point is don't let things slip, as your doctors are quite likely to wait until you let them know things aren't right (that's a UK perspective, and doesn't necessarily apply to Ireland or Australia of course)

I guess also that once you have a diagnosis , are on venesection program and don't have end organ damage your consultant has fairly limited interest in you, as their job as diagnostician and initiator of treatment is done.

Also nice to hear from a guy on the forum.

Regards to all in the HH community