General Medical issues thread

[tgh]

Do you monitor your BP, FM ?
Standing joke with my GP, white coat syndrome drives up the labile bp in the mercurial patient.
Regular home monitoring tells the tale and I suspect that a large percentage of diagnosed hypertensives are just cannon fodder for the drug companies

 

[Flying mermaid]

Do you monitor your BP, FM ?
Standing joke with my GP, white coat syndrome drives up the labile bp in the mercurial patient.
Regular home monitoring tells the tale and I suspect that a large percentage of diagnosed hypertensives are just cannon fodder for the drug companies

yes I do - unfortunately it fluctuates terribly without medication. I get appalling readings as soon as I go anywhere near a doctor. At home in summer without medication I would get really good blood pressure readings, but as soon as the cold weather starts it goes silly as in 180/110. I don’t have any side effects from Amlodipine and 5mg is a low dose. I generally don’t monitor too much in summer, but I try to take it every couple of days in winter

 

[scubabe]

A lot of my family has Factor V Leiden, I've been tested though and managed to bypass that one....

You lucky thing! I only found out when I got a DVT after a flight, so now I have to take anticoags every time I fly. Small price to pay for the ability to not have it happen again.

My aunt many many years ago was a wonderfully adventurous soul. She travelled the world solo and actually died on an aeroplane on her way to South America to trek in the Andes. We didn't get a complete autopsy done (like I said it was a long time ago) but it was suggested to my uncle at the time that she may have died from a PE. She'd been complaining of a sore leg for a few weeks before her trip but thought she'd just pulled a muscle... so she rested before her flight... we'll never know, but now that we know it's in the family, it's a safe bet. I'm now ultra cautious and even take thinners on quick jaunts within AU/NZ.

 

[Pushka]

You lucky thing! I only found out when I got a DVT after a flight, so now I have to take anticoags every time I fly. Small price to pay for the ability to not have it happen again.

My aunt many many years ago was a wonderfully adventurous soul. She travelled the world solo and actually died on an aeroplane on her way to South America to trek in the Andes. We didn't get a complete autopsy done (like I said it was a long time ago) but it was suggested to my uncle at the time that she may have died from a PE. She'd been complaining of a sore leg for a few weeks before her trip but thought she'd just pulled a muscle... so she rested before her flight... we'll never know, but now that we know it's in the family, it's a safe bet. I'm now ultra cautious and even take thinners on quick jaunts within AU/NZ.

DVT as well but in jugular vein. APS which is blood clotting issue too and am on permanent ‘thinners’. Thankfully Xarelto and not warfarin. Mum had a stroke on warfarin and died. My niece who is 33 is testing positive for one of the factors but because she’s not had an event she hasn’t been put on ‘thinners’ yet.

 

[Denali]

@drron i have haemochromotosis too! And lucky me, it gave me diabetes!!

I’ve just signed up for a medical trial for synthetic hepcidin which sounds really interesting. I’ve had an intake interview and 10 gazillion tests and scans, and just waiting now to see whether I’m the right kind of rusty person they’re after (I think they need min or max sf or tsat or something levels to qualify).

Funniest part is, I have the double gene for HH and when I broke the news to my birth parents (who I’m very low contact with) my father swore black and blue that he couldn’t have possibly given me the “dirty gene” (!!!), and I had to have inherited both halves from my mother. Yeah, DNA doesn’t work that way! LOL

I recently found out that I also have Factor V Leiden and I’m wondering if there’s any link between the two. Haven’t been to see my specialist in a while but must ask him!

Can I asked how specifically you had haemochromatosis confirmed?

I ask because just returned from Dr with hubby and have pages of numbers but Dr says hubby is diabetic and we really want to get a 2nd opinion but dont know where to start.

thanks,

 

[tgh]

Your husband is not alone Denali , the world is in the grip of a diabetes epidemic according to my ophthalmologist…he is an oldie like me and is inundated with folks on referral monitoring their eyesight as a part of an overarching watching brief for diabetes complications.

 

[tgh]

This raised a smile in this mornings paper..800 calories a day and you are cured

Diabetes can be 'cured' by diet of 800 calories a day

 

[Pushka]

Can I asked how specifically you had haemochromatosis confirmed?

I ask because just returned from Dr with hubby and have pages of numbers but Dr says hubby is diabetic and we really want to get a 2nd opinion but dont know where to start.

thanks,

It’s a specific genetic test. If his iron levels are normal plus another one I can’t remember then it’s unlikely. Only when those levels are high is the genetic test done.

 

[scubabe]

Can I asked how specifically you had haemochromatosis confirmed?

I had some terrible liver results in routine blood tests. My doc thought I was an alcoholic. We re-tested 6 weeks later and they were still bad. We re-tested once more, and doc put a note to the pathologist saying "investigating recurrent issues, recommendations for further tests gratefully recieved" or something like that. And path lab came back with "test her for hereditary haemochromatosis". So she did, and I have the double mutation.

How/why was your hubby diagnosed with diabetes? eg what started those investigations? And type I or II? It's a lot to get your head around!

 

[Denali]

I had some terrible liver results in routine blood tests. My doc thought I was an alcoholic. We re-tested 6 weeks later and they were still bad. We re-tested once more, and doc put a note to the pathologist saying "investigating recurrent issues, recommendations for further tests gratefully recieved" or something like that. And path lab came back with "test her for hereditary haemochromatosis". So she did, and I have the double mutation.

How/why was your hubby diagnosed with diabetes? eg what started those investigations? And type I or II? It's a lot to get your head around!

Thanks, Type 2.

I dont understand all the medical gibberish but looking at the paper,
Haemoglobin HbAlc: 15.1 (doubled+ in 2yrs)
Iron Ferritin: 1205

Hubby is 57, weighs 90kgs (lost 20kgs in the past year), exercises daily, doesnt drink booze, smoke ect but dad had diabetes (died at 94yrs).

Hubby not accepting this well at all. Seeing another doctor tomorrow for a different opinion and to ask questions we were too frazzled to think about.

 

[Pushka]

I had some terrible liver results in routine blood tests. My doc thought I was an alcoholic. We re-tested 6 weeks later and they were still bad. We re-tested once more, and doc put a note to the pathologist saying "investigating recurrent issues, recommendations for further tests gratefully recieved" or something like that. And path lab came back with "test her for hereditary haemochromatosis". So she did, and I have the double mutation.

How/why was your hubby diagnosed with diabetes? eg what started those investigations? And type I or II? It's a lot to get your head around!

I just had the single trait not double thank goodness. But iron levels are a little strange.

 

[scubabe]

I dont understand all the medical gibberish but looking at the paper,
Haemoglobin HbAlc: 15.1 (doubled+ in 2yrs)
Iron Ferritin: 1205

Yeah, that hba1c is higher than a non-diabetic.
And the Iron studies - was that blood taken after fasting?
Did they do a full iron study? If so, what is the SF and TS%?
This is good reading : https://haemochromatosis.org.au/wordpress/wp-content/uploads/2018/04/HYQA2017-web.pdf

 

[Denali]

Yeah, that hba1c is higher than a non-diabetic.
And the Iron studies - was that blood taken after fasting?
Did they do a full iron study? If so, what is the SF and TS%?
This is good reading : https://haemochromatosis.org.au/wordpress/wp-content/uploads/2018/04/HYQA2017-web.pdf

Yes, fasting test.

Transferrin? 2.82
Saturation? 51
Iron 35.80

Again, all gooberlygook to me.

 

[Flying mermaid]

Yes, fasting test.

Transferrin? 2.82
Saturation? 51
Iron 35.80

Again, all gooberlygook to me.

if you are interested, google is your friend - typing the various things in will tell you what they are and what a high/low reading means. It helps because when you go to a doctor you then have some idea of what the implications are, so you can ask relevant questions.

 

[Denali]

if you are interested, google is your friend - typing the various things in will tell you what they are and what a high/low reading means. It helps because when you go to a doctor you then have some idea of what the implications are, so you can ask relevant questions.

Was trying to avoid the rabbit hole of Dr Google.... its much better to get medical opinions from random strangers on the internet

Going to see different doctor tomorrow and ask specific iron questions and then maybe a 3rd opinion but hubby has to accept the numbers are there but they dont have to be like that forever. Hes 100% anti meds for himself and struggling badly so Im hiding at work for a few hours.

 

[JohnK]

Diabetes isnt only restricted to fat people. A friend is only 60kgs, hardly eats any carbohydrates, and has recently been diagnosed with type 2 diabetes and will be on medication for life.

 

[love_the_life]

Was trying to avoid the rabbit hole of Dr Google.... its much better to get medical opinions from random strangers on the internet

Going to see different doctor tomorrow and ask specific iron questions and then maybe a 3rd opinion but hubby has to accept the numbers are there but they dont have to be like that forever. Hes 100% anti meds for himself and struggling badly so Im hiding at work for a few hours.

It's not long till you leave for Iceland so he better get it sorted quickly.

 

[Denali]

It's not long till you leave for Iceland so he better get it sorted quickly.

Yep, although its on paper now so Im amending our travel insurance for just in case. No plans on having to have to use it but wont risk it.

 

[scubabe]

Those numbers don’t look quite right. Transferrin saturation is one test should be one line. It’s a %. Like I think mine started at 86% and if it gets down to 50% then we jump for joy. But you listed transferrin as one number and saturation as another? So I don’t quite understand that part of your results.

The ferritin at 1200 is certainly high, anything over 300 in males is high, so it is definitely worth a chat with someone and have them explain every number on his paperwork.

Completely agree with not using Dr Google - fiancé and I have a rule not to use it at all while dealing with his cancer stuff.

Hope tomorrow brings some more answers for you guys

 

[scubabe]

Oh and I also wanted to mention there are lots of reasons for iron overload and haemochromotosis is only one of them. So there will be lots to explore...