Posted , 5 users are following.
As some of you know I've not long been diagnosed
I had to have another blood test & Dr rang to say she wanted to see me
She went through the procedures with me
As I've saw a lot of you mention your fear in levels
I've been told mine last time was 300
And explained it can go up & down
Is this high
1 like, 11 replies
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philx Brummiegirl70
Posted
Hi
In July I started at 1433 after 9 venesection I'm at 616 at the moment
And mine had a couple of blips not moving and one week went up by
179.
But mine is minor compared to some on this forum into the thousands
So at 300 I wouldn't be too concerned that should be manageable,
Good luck
Cheers philx
Brummiegirl70 philx
Posted
So mine is relatively manageable at the moment then
I've tried to google it but gives deifferent answers to what women's should be at
My Dr did explain it can go up or down anytime & that it was higher last time
But TBH I've not eaten much as trying to sort out what I can & cant have due to my other illnesses as what I can eat for one I can't for my other ones
It's one big nightmare lol
Thank you philx
At least I know now & for the future
Good luck with yours
Hope you manage to get it at a normal level
philx Brummiegirl70
Posted
Hi
If you are stressed out regarding what to eat ,tell your doctor this
And ask to be seen by a dietian, to put your mind at rest,
Our worst enemies are red meat, seafoods, fortified breakfast cereals.
But I personally have carried on eating as normal ,I dislike red meat, an
Seafood, I wrote a long list of what my diet was like the hemotologist
Said carry on as you are,just let commonsense sense prevail.
I don't abuse anything, and only my opinion 300 is not that high.
And Joyce has just commented hers was 950, please try not to stress
Yourself out,take one day at a time
Cheers phil
joyce1959 Brummiegirl70
Posted
Don't worry, mine was 950 and I'm fine, liver etc!
Poppet01 Brummiegirl70
Posted
I've been told by two specialists that less than 500 is ok.
I do not have venesections.
David.
Poppet01
Posted
That's for male.
Brummiegirl70 Poppet01
Posted
Ithats what I thought that women's should be lower , A lot Lower
'm 46 but have Crohn's disease, ulcerative collitis , IBS & vitamin D deficiency
So I'm finding it hard as to know what's what & for what I can & cant have
Obv I will in time as still new to the illness itself
& trying to find out everything at the moment so I can hopefully get it under control
All I've been told at the moment is that I've got the gene type & that all my direct family needs to be tested
I'm still waiting for my treatment from the hospital
They've messed up with my results back in early August & haveonmy just received my results
My GP has said I should of started treatment when got disgnoised over a year ago now but I'm still waiting
Which shluod be in couple of weeks now
At long last
Brummiegirl70 Poppet01
Posted
Thank you David
But I thought Women's is different
though isn't it ?
My GP said mine was double to what they'd like & currently awaiting treatment
Rachel
sheryl37154 Brummiegirl70
Posted
Depends how old you are - if you are menopausal then 300 is borderline. If you are not and still menstruating, then a lower level (?) is the maximum.
You could either donate blood every 3 months or make sure you are monitored often. Contact your country's haemochromatosis association for proper information.
Brummiegirl70 sheryl37154
Posted
Hi ,
I'm 46 but I've also got Crohn's disease , ulcerative collitis , IBS & vitamin D deficiency
So what I can eat with haemochromotosis
I can't with my other illnesses
And visa Versa
I don't menstruate as had micro eblasion
Which then I was anemic but since I stopped I've since been diagnosed with this illness
I've got the gene type so it's obv I've had it all my life ( I think )
It's really frustrating as the levels are up & down like everyone's
But I think I'll finding it harder at the moment knowing & not knowing what I can & cant eat or drink ESP having the other 2 illnesses
& not fully understanding about the illness due to only just being diagnosed x
sheryl37154 Brummiegirl70
Posted
Just go with what you can eat with your other illnesses - we don't cut out anything for haemochromatosis, excepy maybe liver, clams and raw shellfish.