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There seems to be a correlation between AFF and:
1) Hemochromatosis
2) immunosupression
3) .....insert here.....
1) Hemochromatosis
2) immunosupression
3) .....insert here.....
General Medical issues thread
- Thread starter beefarmer
- Start date
Pushka
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Yeah. Tell me about it. Husband off to a sports med appointment this arvo. Leading to X-rays. Follow up appointment. Physio yada yada. Merry go round.
Post automatically merged:
I have one gene for Hemo. Son with full blown haemochromatosis is adopted!
. Don't blame me.
drron
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Yet not all that have 2 copies of the HH gene develope iron overload but some males with just one gene do. A fascinating disease to study.
I was diagnosed when i moved to QLD in 1992. As usual serendipidity played a part, In QLD the patho;ogy companies used to include iron levels when doing a multiple analysis. No other state did.
So I was required to have a new medical because of the change and It was found my iron levels were high and the gene test revealed I had Haemochromatosis. This was good for my subsequent health but not for life insurance. My policy was cancelled.
One of the first Australian experts in haemochromatosis was Prof. Laurie Powell at QIMR which basically why the pathology companies included iron in their MBAs. They don't now though. Not so long after the Australian wanted to do an article on haemochromatosis for the weekend magazine. I was active in the support society so they told the Australian to talk to me. The result was a 6 page article with my story prominent.
This led to 2 things that were interesting. First I was asked to give a talk and co chair a session at the International Bio iron conference in Cairns in 2001.
The other was a fellow who was a senior executive of a major US Prosthesis maker was on a prolonged holiday and at the time was sailing himself down the QLD Coast. He read the article so called in at Mooloolaba and came and saw me because they had noted the high percentage of those needing their knee or hip products had high iron levels yet his physicians told him he need not worry. He did have Haemochromatosis.
I was diagnosed when i moved to QLD in 1992. As usual serendipidity played a part, In QLD the patho;ogy companies used to include iron levels when doing a multiple analysis. No other state did.
So I was required to have a new medical because of the change and It was found my iron levels were high and the gene test revealed I had Haemochromatosis. This was good for my subsequent health but not for life insurance. My policy was cancelled.
One of the first Australian experts in haemochromatosis was Prof. Laurie Powell at QIMR which basically why the pathology companies included iron in their MBAs. They don't now though. Not so long after the Australian wanted to do an article on haemochromatosis for the weekend magazine. I was active in the support society so they told the Australian to talk to me. The result was a 6 page article with my story prominent.
This led to 2 things that were interesting. First I was asked to give a talk and co chair a session at the International Bio iron conference in Cairns in 2001.
The other was a fellow who was a senior executive of a major US Prosthesis maker was on a prolonged holiday and at the time was sailing himself down the QLD Coast. He read the article so called in at Mooloolaba and came and saw me because they had noted the high percentage of those needing their knee or hip products had high iron levels yet his physicians told him he need not worry. He did have Haemochromatosis.
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For me, it was about 1995 in Sydney aged about 35 and I had a blood test for something that included iron. Can't remember why. Straight off to a gastroenterologist and having venesections. Liver biopsy found no problem. I put up with seeing gastros for about 5 years then found I could manage levels in consultation with my GP.
When I went onto blood thinners about 6 years ago, the Red Cross sent me packing, so I arranged to have blood taken by my GP - but, strangely enough, the rate iron build-up has slowed, with no change in lifestyle, except maybe more exercise. Hardly ever need to be bled these days.
When I went onto blood thinners about 6 years ago, the Red Cross sent me packing, so I arranged to have blood taken by my GP - but, strangely enough, the rate iron build-up has slowed, with no change in lifestyle, except maybe more exercise. Hardly ever need to be bled these days.
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He played in a cricket team called "Liver Labs First XI"
JohnK
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I'm not sure everyone gets Osteoarthritis.
Dad has had Osteoarthritis and I now have it everywhere. Mum doesn't. Brother doesn't.
Mum does have ankylosing spondylitis and apparently if Im not mistaken its unusual for a female to pass to both sons.
Dad has mild immune issues and so does my brother. My immune issues are severe.
I think I'm the only one in family with gout. And Sacroiliitis. And tendonitis. And bursitis.
Trying to treat any of these conditions is challenging. Trying to treat all of them is almost impossible. I know weight loss may help but that's easier said than done. Forget exercise. If I was sitting around with nothing to do. I might do some light exercise and bear the pain with time to recover. I'm not going to exercise morning and night and try to work for 8-9 hours a day and be the family uber too.
You know that light at the end of the tunnel? It's very faint....
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Mr Terry was supposed to have another type of scan this week however unexpectedly cancelled by the hospital. I happened to be out at the time and was feeling a tad overwhelmed at the news. Anyhoo I went into a pharmac_ that I hadn't been in before to ask about Ensure for him . There was four banana ensure juice size boxes all with "Sample only on them , talk to staff "
Well staff person came, saw it said that and asked the person on the register to scan it , register person said I can't (by now I am getting rather upset not angry ) and so the staff member who was helping me said ok here you go. Just gave me this one juice box size of ensure, as a sample
. Funny what makes you feel a bit better in a very weird way
Well staff person came, saw it said that and asked the person on the register to scan it , register person said I can't (by now I am getting rather upset not angry ) and so the staff member who was helping me said ok here you go. Just gave me this one juice box size of ensure, as a sample
. Funny what makes you feel a bit better in a very weird way
tgh
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With a lot of time on my hands, I have written a little story about my recent medical adventure
I am innately a fairly private person but hope my story helps someone avoid my fate.
The bottom line is that I am extremely lucky to be still here and looking forward to resuming a normal life.
PART ONE Preamble
I am at the wrong end of my septuagenarian years but have been very fit and well with only minor issues.
The adventure started from a discussion with my GP about Statins , as the cholesterol levels had crept up just a little.
I had tried statins when first diagnosed with mild diabetes 20 years ago but found them disagreeable.
GP knows me well and suggested a Coronary Calcium test, offering that if it was low I could forget statins
The test is not covered by Medicare (and imo should be) so 10 min and $190 later the deed was done.
The result was not good at all and the biggest single hit to my tailfeathers in living memory ; especially discouraging
was that I had flown through a Stress echo less than 12 month earlier.
The GP started me on statins and opined that the only definitive test was an angiogram that was not without risk.
As I was asymptomatic, he said I should just keep up my active life with no exertion limits at all.
In hindsight this was not a great call by the GP.
Back in the traces I continued my re-grouting of acres of pavers around the ponderosa in preparation for sale.
I developed some mild chest discomfort but as I am always annoying some muscle or other, ignored it.
I do maintain a daily diary of waking blood pressure and a long slow upward trend was now escalating.
Another week or two passed and I eventually suffered enough discomfort to be woken at 3 am.
BP was 185 and the bells were now ringing although I felt quite well
After breakfast we set off for our GP practice who had a Sunday session for urgent cases only.
Calling to say we were on the way we were officiously told they were full and would not see me (full stop)
Here dear reader, the adventure began in earnest...
Presenting to the local hospital ER, a very snappy triage entry ensued after a bp test at 200..
I still felt completely normal and even then, thought I may have been “crying wolf”.
I am innately a fairly private person but hope my story helps someone avoid my fate.
The bottom line is that I am extremely lucky to be still here and looking forward to resuming a normal life.
PART ONE Preamble
I am at the wrong end of my septuagenarian years but have been very fit and well with only minor issues.
The adventure started from a discussion with my GP about Statins , as the cholesterol levels had crept up just a little.
I had tried statins when first diagnosed with mild diabetes 20 years ago but found them disagreeable.
GP knows me well and suggested a Coronary Calcium test, offering that if it was low I could forget statins
The test is not covered by Medicare (and imo should be) so 10 min and $190 later the deed was done.
The result was not good at all and the biggest single hit to my tailfeathers in living memory ; especially discouraging
was that I had flown through a Stress echo less than 12 month earlier.
The GP started me on statins and opined that the only definitive test was an angiogram that was not without risk.
As I was asymptomatic, he said I should just keep up my active life with no exertion limits at all.
In hindsight this was not a great call by the GP.
Back in the traces I continued my re-grouting of acres of pavers around the ponderosa in preparation for sale.
I developed some mild chest discomfort but as I am always annoying some muscle or other, ignored it.
I do maintain a daily diary of waking blood pressure and a long slow upward trend was now escalating.
Another week or two passed and I eventually suffered enough discomfort to be woken at 3 am.
BP was 185 and the bells were now ringing although I felt quite well
After breakfast we set off for our GP practice who had a Sunday session for urgent cases only.
Calling to say we were on the way we were officiously told they were full and would not see me (full stop)
Here dear reader, the adventure began in earnest...
Presenting to the local hospital ER, a very snappy triage entry ensued after a bp test at 200..
I still felt completely normal and even then, thought I may have been “crying wolf”.
tgh
Established Member
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- Apr 23, 2006
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- 3,505
Part 2 ER
This phase was seriously interesting stuff, external chaos with multitudes crowding to see a doctor and
Ambulances everywhere, transitioning to calm , quiet order in the treatment area.
I had an ecg within 5 min and an Xray within 10.
Another ecg and blood tests quickly followed, it was all calm , organised and impressive.
I ended up in my cubicle at er for 23 hours, still feeling fine but held in thrall at the comings and goings.
The hours ticked by and eventually a very cheerful young doctor diagnosed very mild angina but with a few ecg anomalies .
She said it was a close call but had decided to admit me.
I was offered admittance as a public patient and review next day by their cardio team , or alternately they would call the Brisbane area cardiologist
who was “on” for the weekend to admit me to a private hospital. Someone and Somewhere unknown was not inviting.
I had just listened to a patient next door with the same issue, who decided to take his chances with the on-duty area cardiologist.
We often live or die by our decisions and here luck was with me.
After consulting swmbo, I elected to go to a ward and chase options on Monday when everyone was back at work.
ER was an amazing place….
A little girl appeared ; to my eyes no older than 14 , escorted by a minder she was seated beside the nurse station
but was restless and eventually laid out on the floor.
She arrived in the cubicle beside me, was a bit whiny/difficult but not restrained, although under constant benevolent supervision by a security minder
Eventually the voices in her head dissipated and she was able to persuade them let her return to a local safe house where she lived.
Some time later a very attractive 17ish female was placed in a secure cubicle near me , again watched very closely by a minder.
The care by medical staff was magnificent, a cast of many entreated and cajoled her to have a shower, eventually she left and did not return
I was enormously saddened by this little cameo of the dark side of life, how a kid ends up like this is quite heart rending.
Part 3 FAWLTY TOWERS
All of a sudden, we are out of er and I find myself in a pleasant 2 bed room in the hospital coronary ward.
Reviewed next morning by their visiting cardiologist a few more tailfeathers vanished in a flash.
Your heart is fine, no heart attack or damage but you need an angiogram and probably a stent ,
I will refer you to Peter H who is Brisbane’s best Interventional Cardiologist. He will do you tomorrow….Oh….
He noted that my private cover was a fast lane ticket and that he had ward full of patients awaiting treatment
Expecting to be despatched early next morning to the private hospital for an imminent procedure…nothing happened.
Friendly staff were inscrutable, we know nothing…
Staff here were, as a broad generalisation, friendly and helpful but somewhat vacuous , reflecting the challenges of staffing a public hospital.
I rang swmbo and suggested prompt affirmative action; she called the surgeons rooms and action was immediate
Within an hour I was packed off to the transit lounge, replete with the elderly and infirm and staff who maintained the Fawlty ethos.
An ambulance crew eventually arrived, and I was on my way to the overt chagrin of the assembled multitudes.
Last Fawlty word…The other person in my room had been prepped before dawn for a transfer and a similar procedure.
He was still there when I left late morning, and nobody had any idea what was happening… the challenges of public medicine in action.
This phase was seriously interesting stuff, external chaos with multitudes crowding to see a doctor and
Ambulances everywhere, transitioning to calm , quiet order in the treatment area.
I had an ecg within 5 min and an Xray within 10.
Another ecg and blood tests quickly followed, it was all calm , organised and impressive.
I ended up in my cubicle at er for 23 hours, still feeling fine but held in thrall at the comings and goings.
The hours ticked by and eventually a very cheerful young doctor diagnosed very mild angina but with a few ecg anomalies .
She said it was a close call but had decided to admit me.
I was offered admittance as a public patient and review next day by their cardio team , or alternately they would call the Brisbane area cardiologist
who was “on” for the weekend to admit me to a private hospital. Someone and Somewhere unknown was not inviting.
I had just listened to a patient next door with the same issue, who decided to take his chances with the on-duty area cardiologist.
We often live or die by our decisions and here luck was with me.
After consulting swmbo, I elected to go to a ward and chase options on Monday when everyone was back at work.
ER was an amazing place….
A little girl appeared ; to my eyes no older than 14 , escorted by a minder she was seated beside the nurse station
but was restless and eventually laid out on the floor.
She arrived in the cubicle beside me, was a bit whiny/difficult but not restrained, although under constant benevolent supervision by a security minder
Eventually the voices in her head dissipated and she was able to persuade them let her return to a local safe house where she lived.
Some time later a very attractive 17ish female was placed in a secure cubicle near me , again watched very closely by a minder.
The care by medical staff was magnificent, a cast of many entreated and cajoled her to have a shower, eventually she left and did not return
I was enormously saddened by this little cameo of the dark side of life, how a kid ends up like this is quite heart rending.
Post automatically merged:
Part 3 FAWLTY TOWERS
All of a sudden, we are out of er and I find myself in a pleasant 2 bed room in the hospital coronary ward.
Reviewed next morning by their visiting cardiologist a few more tailfeathers vanished in a flash.
Your heart is fine, no heart attack or damage but you need an angiogram and probably a stent ,
I will refer you to Peter H who is Brisbane’s best Interventional Cardiologist. He will do you tomorrow….Oh….
He noted that my private cover was a fast lane ticket and that he had ward full of patients awaiting treatment
Expecting to be despatched early next morning to the private hospital for an imminent procedure…nothing happened.
Friendly staff were inscrutable, we know nothing…
Staff here were, as a broad generalisation, friendly and helpful but somewhat vacuous , reflecting the challenges of staffing a public hospital.
I rang swmbo and suggested prompt affirmative action; she called the surgeons rooms and action was immediate
Within an hour I was packed off to the transit lounge, replete with the elderly and infirm and staff who maintained the Fawlty ethos.
An ambulance crew eventually arrived, and I was on my way to the overt chagrin of the assembled multitudes.
Last Fawlty word…The other person in my room had been prepped before dawn for a transfer and a similar procedure.
He was still there when I left late morning, and nobody had any idea what was happening… the challenges of public medicine in action.
tgh
Established Member
- Joined
- Apr 23, 2006
- Posts
- 3,505
Part 4 THE POINTY END
Greenslopes Cardiac ward was an oasis of calm; caring and competent staff, eatable food and a humungous room with the prized car park view
I had coronary angiogram “for a look” very late that evening.
The surgeon explained next morning . The bad news is that the LAD artery is almost fully calcified, the good news is that the calcification is all in the one place and quite fixable.
He described the impending rota procedure as tricky and as he wanted to start the job rested and bright eyed , I would be rescheduled in a few days.
The room was a fog of falling tail feathers as the rooster morphed to a mouse at the prospect.
I made a little spectacle of myself, as the night before Armageddon I walked 4k’s up and down the corridors of my little prison wearing my wireless monitor
Suffice to say that all went well, and I am home recuperating, supported by a pharmacological “horn of plenty “ drug regime.
I hope these words have been both entertaining and informative
I was enormously lucky and was extremely close to recruitment as a daisy pusher.
Greenslopes Cardiac ward was an oasis of calm; caring and competent staff, eatable food and a humungous room with the prized car park view
I had coronary angiogram “for a look” very late that evening.
The surgeon explained next morning . The bad news is that the LAD artery is almost fully calcified, the good news is that the calcification is all in the one place and quite fixable.
He described the impending rota procedure as tricky and as he wanted to start the job rested and bright eyed , I would be rescheduled in a few days.
The room was a fog of falling tail feathers as the rooster morphed to a mouse at the prospect.
I made a little spectacle of myself, as the night before Armageddon I walked 4k’s up and down the corridors of my little prison wearing my wireless monitor
Suffice to say that all went well, and I am home recuperating, supported by a pharmacological “horn of plenty “ drug regime.
I hope these words have been both entertaining and informative
I was enormously lucky and was extremely close to recruitment as a daisy pusher.
- Coronary calcium scores could/should be free and emphasised as a heart health prophylaxis.
- Even the mildest angina in the fittest individual can be a message of impending doom.
- We have paid squillions in private medical insurance over the years but the performance difference
- between the publicand private systems may be one reason I am still here.
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JohnK
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Had rheumatology outpatients appointment yesterday. Was keen to see/hear the results of my bone scan in March. The rheumatologist I've been seeing for the past 18-24 months sounded very keen to try and help me. My surprise there's a new rheumatologist seeing me. Never saw them before. My regular rheumatologist is on leave.
"Where do you hurt?" Everywhere. "No where do you hurt? Everywhere. All joints, most tendons, muscles. Everywhere. I really don't have a good feeling about this doctor.
Apparently bone scan shows severe degeneration of the sacroiliac and L4-L5. The explains the constant pain in lower back/pelvis/groin/hamstring the past couple of years. I mean this was diagnosed 20+ years ago but we've not specifically done anything about it.
Osteoarthritis everywhere. Hips and now the knees are following suit. That explains the recent severe knee pain. Have trouble walking downstairs.
Now the fun part. There's no signs of any other arthritis. Huh? There's nothing he/they can do. He said "go back to my GP and panadol and exercise will help manage Osteoarthritis". Seriously? "And lose weight". Yeah that's really simple. "There are programs and medicine you can take to help".
By this point I'm in total disbelief. He actually discharged me. Rheumatology has been seeing me for close to 10 years with at least a 12 monthly review and this imposter is ending it. "If you need to see us again then ask your daughter for referral". LOL. So wait months/years to try and get back into outpatients? Thanks for nothing.
Just because someone has "qualifications" does not mean they know anything or even willing to help. I give up.
"Where do you hurt?" Everywhere. "No where do you hurt? Everywhere. All joints, most tendons, muscles. Everywhere. I really don't have a good feeling about this doctor.
Apparently bone scan shows severe degeneration of the sacroiliac and L4-L5. The explains the constant pain in lower back/pelvis/groin/hamstring the past couple of years. I mean this was diagnosed 20+ years ago but we've not specifically done anything about it.
Osteoarthritis everywhere. Hips and now the knees are following suit. That explains the recent severe knee pain. Have trouble walking downstairs.
Now the fun part. There's no signs of any other arthritis. Huh? There's nothing he/they can do. He said "go back to my GP and panadol and exercise will help manage Osteoarthritis". Seriously? "And lose weight". Yeah that's really simple. "There are programs and medicine you can take to help".
By this point I'm in total disbelief. He actually discharged me. Rheumatology has been seeing me for close to 10 years with at least a 12 monthly review and this imposter is ending it. "If you need to see us again then ask your daughter for referral". LOL. So wait months/years to try and get back into outpatients? Thanks for nothing.
Just because someone has "qualifications" does not mean they know anything or even willing to help. I give up.
Pushka
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There are some rubbish rheumatologists around, that's for sure. Sounds like you struck one. But I don't think they treat arthritis et al that isn't of rheumatoid origin. Because there's nothing they can do. So no blood markers for RA? Were there in the past?
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I have a very good rheumatologist in Brisbane (Kangaroo Point) but I see him privately, although I know he works at the PA but not sure about appointments there.
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That might be a contributing factor.
Read our AFF credit card guides and start earning more points now.
JohnK
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I don't think I've ever been diagnosed with rheumatoid. I have been diagnosed with HLA-B27 and other inflammatory markers are present in blood tests.
The previous rheumatologist said I am a strange case which I guess why he took interest. He said my issues are mostly mechanical which I do not agree with at all.
There are clear signs of inflammation daily. There are clear signs of (arthritic) degeneration in many joints. I've had issues with tendons. I've had issues with bursa. These are all inflammatory.
Pushka
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Yes but not within the specialty of rheumatology to treat. It sounds like the original specialist wasn't treating you as such, just found it interesting. And the new doctor isn't as interested.
You can have blood markers but without specific symptoms that doesn't convert to the diagnosis. eg You can have markers for blood clot development but until you have an actual blood clot or similar, then it is treated differently.
Inflammation isn't a specific marker for a specific diagnosis.
I see a Rheumatologist privately too. After the first dud one, this one is excellent but she does treat specifically according to the specifications set out by the professional society of Rheumatologists. She doesn't have a choice. She's on the board.
JohnK
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Dr Phillip Vecchio? He is the one that I've been seen at PA Outpatients. He's quite good but he's on leave and wasn't there yesterday.
@Pushka I do understand. It's not easy for specialist to treat when the symptoms are not by the book. This is where someone like Dr Vecchio was trying different things.
I've been suffering most of my adult life. I'm not expecting miracles but Sacroiliitis and ankylosing spondylitis are 2 of the worst conditions you can have without being seriously ill.
Lower back and groin severe pain. What do you do? Sit down? Still in extreme pain in backside and down the back of the legs. Lay down? Still in extreme pain. No relief possible that I can see. Sure rheumatologist cannot do anything about it but doesn't mean it's not a serious issue.
Wake up in morning and fingers are badly swollen with severe joint pain. Extremely uncomfortable. Can't make a fist. If driving a car it's difficult as cannot hold steering wheel firmly. Difficult to work. Playing golf cannot hold a golf club.
Some mornings wake up and thumb and forefinger have pins and needles. Difficult to type and a distraction trying to work. This can last up to an hour or more.
Chronic neck pain. Medicine does not usually help. The only relief I find is to make it hurt more by moving neck around.
There are other issues. Too many to list. Life is difficult. Life is torture but I've never given up. And then to have some quack telling me nothing he can do and to take panadol and exercise shows me he does not care.
I don't care either. If medicine can't help me then I'm self medicating. I don't want to take pain killers. Useless and only temporary relief. Arthrexin comes with issues. Naprosyn SR1000 doesn't always help. So I'll take 10mg-25mg prednisone when I decide I need it and yes it does provide some relief. I bought 100+ 5mg tablets in Thailand for 5 baht each.
And to top it off is the psychological damage all this is causing. It's so difficult finding someone that understands.
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