New to genetic heamatomachrosis
Posted , 3 users are following.
hi everybody
recently diagnosed with Gh and to date had 3 venesections with another 2 scheduled in the new year so things are moving hopefully in right direction.
anxiety is a problem for me unfortunately so i tend to go over things again and again.
my symptoms before diagnosis were mainly fatigue and generally feeling unwell kinda viral symptoms.
anybody else had these symptoms?
i know this did not appear overnight and wont likely disappear but wondering when i should feel a bit more energetic and well.
appreciate this group as i have not actually spoke to another person with G h
0 likes, 6 replies
sheryl37154 bigmag
Posted
With me it was 9 years without diagnosis suffering fatigue so bad I was staggering and slurring and wanting to lie down on the floor or ground and go to sleep. I also had severe bone and muscle pain. Mine had come on suddenly after having a hysterectomy, no longer menstruating.
Then one day my left hip broke up and the radiologist said my blood was so thick with iron that it was not getting into the fine capilliaries that fed the bone. I must say the fatigue never went away but I put that down to the damage that was done from late diagnosis. I ended up having both hips replaced.
Otherwise from what I have read and spoken to other Gh people, their fatigue gradually dissipated. Everyone is different so you have to be patient. The few venesections you have had will not take it away. You must remain motivated and happy to get that stuff out of you!
It cannot be predicted, unless your ferritin and TS% was not too high. Just let it go, and do what you have to do, and be prepared to make it part of your life now.
Good luck
bigmag sheryl37154
Posted
HI Sheryl
thanks for replying. it takes a while to digest everything and process. i realise i am lucky that i am at least being given appointments for venesection with covid ongoing.
i have been fatigued for years but honestly there was always a reason i could justify, then i started suffering episodes of viral like malaise very frequently and this drove me back to Gp who after blood tests gave me diagnosis of Gh.
When i read up about it it made sense.
i am a naturally anxious person and dont take any of this in my stride but i do try constantly to be rational.
i would be interested to hear if anybody else had symptoms like me before diagnosis.
hope your well as you can be at this time .
margaret
sheryl37154 bigmag
Posted
Hi Margaret
As a Volunteer Advocate for a haemochromatosis association, a previous leader of a support group (until I got too exhausted to continue), attending conferences with international speakers, spoken to them and read many research reports, I can assure you that your symptoms are very common for early stages.
We generally share what genes we were diagnosed with, our ferritin and TS% at diagnosis and current ferritin. I am homozygous C282Y- aggressive, my husband is homozygous H63D - mild, and our son is compound heterozygous C282Y/H63D - inbetween. He could not possibly miss out.
My ferritin level at diagnosis was >999. They did not do TS% 32 years ago but when they did mine was very high like 99% and even 107% at one time. Only in the last year, has my TS% finally reduced to normal. At last test my ferritin is in low 20s, which is ok - no symptoms for having such a low ferritin. It has been 13 sometimes. For a number of years, I have been in maintenance mode of vx every 3 months. I have kept having the vx even when my ferritin has been in the 'normal' range and this has brought my TS% down. I used to have only 13 days fatigue free after a vx, then a heavy weight started 'flattening' me.
This information helps compare where we are at, and to understand what is happening with others. I always find it interesting to know at what stage others are. It helps to keep learning. So please feel free to share.
bigmag sheryl37154
Posted
hi sheryl
i dont know any of my exact readings ......all i was told was i had very high iron levels. when i am at hospital next week i will ask where i am at with levels.
i appreciate your input and it does reassure me to know others have suffered same symptoms as i was beginning to think there was something else going on. obviously with covid at the forefront i have not had any consultation or information with my gp or heamatologist but i have been researching online and now have a better understanding as to what Gh is about. i am of irish ancestory so am a candidate.
i did not manage to go for my venesection this week as i was unwell with these viral like symptoms i take frequently and just felt it would not be wise to go.
you certainly have been through the mill and back Sheryl but its good that your are able to share and keep the rest of us going with your experience.
thanks again will keep posting xx
sheryl37154 bigmag
Posted
Hi Margaret
Always ask for a copy of your blood tests, including your genetic test which should have been before Gh can be diagnosed with a surety.
Otherwise high iron can be something else, and does not need to be treated with venesections. Other causes are fatty liver, liver problems, any inflammation or infections, even a cold so I hope you have straight forward Gh, otherwise your dr should be investigating further.
People with Gh are prone to fatty liver and liver problems too. Best to avoid all sugars, and starchy carbohydrates and this will help keep your liver clear and healthy.
Let us know when you get a copy of your blood test results.
bigmag sheryl37154
Posted
i should have said after high iron result i then had genetic blood test.
thanks again for your response SHERYL i wi.ll keep in touch.