Feeling so frustrated now

Thank you

I haven't even seen my specialist for the first appointment

Also I don't even know what any of my levels are

I've just been diagnosed , had three blood tests & been on waiting list to see my specialist .

With all the symptoms & with not knowing anything is causing more stress

Maybe I should book to see my GP & ask questions about my levels

I had to google prilosec - it is for too much acid in the stomach, heart burn, etc.  Can you explain why taking this is good for haemochromatosis please.  It was not prescribed to me and Brummiegirl has not complained of this symptom.

 

I haven't heard of Prilosec either but I've just googled it myself & was shocked to see it's good to take for my crohns & ulcerative colitis

Though ive never suffered with too much acid or heartburn ,

So I'm not sure if would cause me more problems with these 2 illnesses

I've never been prescribed this with all the years I've had both illnesses

Though I don't understand how it helps with haemochromatosis either

I'm lucky I suppose as I'm not too keen on red meat so it doesn't bother me

That's the two things I find hard to deal with memory & focus

I have all my life but always put it down to when I was wrongly diagnosed as being epileptic

Since I've found out I was wrongly diagnosed & then diagnosed with haemochromatosis I can try to get help with it

There's so many symptoms with this illness that I'm starting to feel like a Hyperchondriac

As I'm googling all my symptoms to see if it's related or not

Nearly every symptom is related

I just can't understand why my GP never picked up on all my symptoms before & had to tested years ago

im not doctor, so please hang with me while i tell you what he said. and this is not a quote, just in a nutshell what he described. my ferr levels were at 1000, ct scan said heavy iron saturation in my liver. also i was a moderate drinker, which didnt help. what he said is by prilosec blocking acid ducts in the stomach, it would allow me not to feel like vomiting everytime i ate. maybe ot was just me, but i was conatantly vomiting in the morning and after dinner and it was always after i ate. he said it was the livers way of trying to control the iron it was holding. by over producing acid. or pancreas actually i think. have you never vomited that greenish yellow bile? thats how i got diagnosed, complained of it and the doc ordered a blood test. it wont cure the haemo, but keeps me from puking everyday. i thought everyone had that symptom

hi, that makes sense now,

?Though ive never had that  problem for a lot of years only when my crohns flares up, Which thankfully ive managed to keeep it under control for many years now

ive just got to watch what i take with regarding all my illnesses

?even down to the diet with the haemochromatosis as with what ive found i can take as food wise with this illness,

I cant with my other illnesses,

its as if ones counteracting against the others .

this is why im finding it all hard to accept and take in & in need of seeing my specialist to do me a diet plan to suit all my illnesses.

 

ive read that alcohol absorbs th iron more , Is this true ?

or it it just because there both related to causing liver damage.

only im dubious what i read when googling medical problems as most would indicate im near death lol  

yeah. thats dangerous, by the end of the search you'll be dying of ebola and the black plague. i dont think it absorbes it, from what he told me is your liver is like you or me. we work, can multitask, but only so much. so, as your liver is trying to unload iron, it also has to process fat, protein, etc. so, with haemo its already working overtime, add alcohol and its another task added. liver basically cant handle it. loss of appetite is due to that i believe. perfect example, i got a new job, to celebrate my girlfriend and i made dinner, each had 6 beers throught the evening, which i dont think is crazy) went to bed, woke up, she was stone sober, as most would be. i went in 14 hours after the last beer, 19 after we had our first. blew a .10. thats when i knew something was wrong. plus the vomiting. so i hope that explains a little. your liver can only do so much, alcohol wasnt a priority i guess. so, i just dont drink anymore

haha thats the trouble with google lol

see ive read different things on drinking beer with this illness,

most say it absorbs the iron a lot more

after i have a drink i burn up really bad , it feels like a hot tourch burning inside,

?it also happens after certain foods ive eaten

i am still learning as theres so much to take in with this

?that definetly doesnt sound right & youve done the right thing with not drinking anymore

think theres a lot that has to be avoided with this & seems like its all the things we enjoy sadly ((

 

he didnt say anything about alcohol absobing it, but my doctor isnt god, so that may very well be true. and i know the burning feeling. youre right, certain foods and on rare occasions i will have a drink ( doctor said 2 a sitting, 2 days a week, max) but what is the point of that? haha. holiday dinner or wedding ill do his 2 rule, and i start burning up

Garrett, that was a good description of what work our liver has to deal with and drinking and haemochromatosis doubles (or more) the load on it.  It seems that normally, our liver is pretty tough, but combining those two can be deadly.  And, even those who do not have haemochromatosis, can end up with liver problems (and high ferritin) because of too much alcohol.

I have been living with haemochromatosis for 26 years now, the first 9 years undiagnosed and a lot of damage was done to my body (and memory and focus).  However, luckily, I was going through a no (or very minimal) alcohol period, so my liver survived ok.  Just everything else is stuffed!!!

So, no, I have not experienced vomiting that green bile (actually I did when I was a kid but supposedly haemochromatosis does not affect us then) but I do know of someone (with haemo) who does and I think he thinks 6 beers everynight is ok too, and is not connecting.

Over the years, I have worked out that I don't digest sugars and starches very well (and it is common amongst people with haemo as our pancreas may not deal with the insulin very well), and if I have a meal including sugars and starches (like bread, pasta, potatoes), I feel like I have been hit by a truck and start slumping and slurring embarrassingly.  I feel the need to lie down and sleep it off!!!

 

thats wild with the starches. and yeah, that person you referenced, does he eat a red meat/fatty diet? thatll trigger it as well. also, for memory my doc prescribed b-1 and folic acid to help. i have the same problem, and im interviewing for jobs. terrifying when you cant focus on how to put groceries away at times

He probably does eat red meat, and so do I - it is not recommended that we stop eating it, as long as it is not 3 times a day.  Unless you prefer not to eat red meat anyway as some people do.  He is single, past middle age, and probably does not eat healthy.  He no doubt has a fatty liver, belly enlarged, and that has been found to be caused more by sugars and starches (the fatty liver).  Eliminating sugars and starches reduces the fatty liver problem and also the high ferritin caused by that.

I have read that sugar attracts iron, but I think indirectly, as in giving us fatty liver first, then we get a higher ferritin level.

Interesting info about b1 and folic acid (my folic acid level is good but I don't think I have been tested for b1).  I shall check it out.  I do already take vit b supplements but sometimes some of us do not absorb properly.  My b12 is good.

 

and im not knocking red meat, i try to do chicken and fish because of doc orders, but again, being from the midwest, its not a meal unless its mooing.

If your dr has told you not to eat red meat because of haemochromatosis, a bit of research on your part will reveal that is unnecessary, and you can show him that.

That is, if you want to.  However, reading back I see you do have a liver problem, so for the time being, it would be best to do everything possible.  A venesection will remove the iron of about 50 steaks each time (depending on how big you eat them of course).  Do you know about drinking tea/coffee/milk with meals and eating calcium foods to reduce uptake of iron?  Also avoid vit C and drinking OJ with meals which increases the uptake of iron.

 

yeah, i drink iced tea daily, living in a desert you can brew sun tea in 2 minutes flat. haha. i do think my doctor tends to error on the side of caution. but just trying to relay what he told me. and its taco tuesday, about to destroy some carne asada, dont tell him that

haha