Good news re iron depletion

not aware that there was " aggressive and non -aggressive versions". Where do I find that info?

Also could you expound on how having my ferritin checked shortly "before" v x could be truer..? we are talking minimal time frame...

Ok, forgot you were not up to the 3 monthly maintenance stage yet. So mine are 3 months apart just before (a few days so I get the results) my next vx.

As you are going to vx every 3 weeks, you will probably be tested every 6 weeks. So you will still get a better picture knowing how much you are loading before your vx.

Any official description of GH generally lists the genetic HFEs and their propensity to cause differing levels of iron overload. In France, homozygous H63D is not even accepted as a condition to be treated. S65 - forget it in most, if not all countries. Only homozygous C282Y, and compound heterozygous C282Y/H63D, are generally accepted as causes of overload that causes health issues. Not that I agree with it.

Then within those, even homozygous C282Y, some people don't load iron at all and are asymptomatic and some drs tend to lead with this as an excuse to not investigate further.

I am homozygous C282Y, my husband is homozygous H63D (ferritin level 550 at 50 years old - no symptoms), and son is compound heterozygous C282Y/H63D with a ferritin level of 772 at age 22.

If your homozygous C282Y was aggressive, and you were not menstruating when you were younger, your ferritin level would have become very obvious at <40 years old. Or, as soon as you started menopause, your levels would have taken off to a high level quite quickly.

Be cause of my encouraging iron reduction amounts I have opted to go with vx every 3 weeks instead of 2. However I will have ferritin tested within a few days of each vx, not so much to monitor loading , but to monitor breaking 100 and then I will test bimonthly to monitor loading.

Curious to know what your ferritin level was at diagnosis and how long, how much, how often until you were deironed.

At diagnosis, my ferritin was reported as >999 (they did not test with a high load in mind as I was a female). I had been donating blood about every 3-4 months before I knew I had GH.

They did not test TS% back then. I had a hysterectomy and I started loading with symptoms at 6 weeks after surgery but my dr ignored it - for 9 years! I was staggering and slurring with fatigue, foggy brain, and had a lot of body pain, and eventually my hips broke up with avascular necrosis. I was told my blood was so thick with iron that it could not get into the finer capilliaries that fed the bones. So the hip bones died and broke up.

First vx 16/7/98, ferritin 27 at 25/10/99, after weekly, then two weekly, then monthly, etc. vx. I was still on two weekly when it went to <50 (which is when we are classed as de-ironed). It went up to 152 Jan 2002, then down, and another jump up in 2004 to 173, and my TS% was always in the high range, Serum Iron all over the place, Hb always in healthy range. Blood tests were all over the place, timed just before I saw haemotologist. I thought this was rather stupid as there was no pattern to follow. Then when I could make my own decisions, I found it better to find out what my bloods were before I vx'd.

My last ferritin was 11 with no problems at all, but I had suggested to my haemotologist that I reduce vx quantity to 350mls, but the nurse forgot and took 450. I have found it necessary to keep to 3 monthly to keep my TS% down but thought I would try the lesser quantity taken. Any time my haemotologist increased the time between vx, my ferritin skyrocketed. I would have arrythmia, etc, and I would have to go back to every two months for two years, so I said no more, I was not going to vary the time between vx again.

You will find that if you have even a simple cold, the infection will send your ferritin levels up. But it will reduce naturally when the cold is gone, so no extra vx are necessary.

It can be a rollercoaster ride and often it is when you look backwards you see the perspective. I record everything on a spreadsheet. I did not at first and I don't think I got every blood test results but it has been 21 years for me to look back on now.

A late diagnosis and the consequences of this has been very regrettable, so I always encourage people to get a diagnosis and treatment as early as possible, if they express symptoms.

Good luck.

Alarming when you indicate " ferritin skyrocketed" what kind of numbers are you talking about?

Not as alarming as it sounds - sorry. As you can see in my previous response, it went up to 173 and 152 on two separate occasions from <50. 80 and over gave me arrythmia and chest pain. Later I was to find that >50 gave me arrythmia, etc. I experienced this before I found my ferritin was higher, so it is not psychological. So those levels affect me in a very negative way. I now keep it in early 20s. It has been as low as 13, and last test 11 as previously advised. It is not harmful to be that low because it is ferritin, not Hb.

Thanks Tom. I am a long way from the bush fires as we practice control burns during winter in the state I live. The media included all the control burns as currrent wild fires in their reports which made it look like the whole of Australia was on fire. We hope the affected states will go back to control burning from now on. Eucalyptus trees are very volatile too.

Have you noticed that there is not as many enquiries on this forum as there used to be?

glad u guys are safe thats great seems the media are now more concerned with coronovirus

yes i have noticed the lack of posts on the forum i have my next tests next month then follow up with consultant in April so i will keep posting when i can i am committed to this forum

have a nice weekend all our 3 sons will be at twickenham tomorrow hopefully to watch our ireland team beat england i cant do the walking anymore so its the tv seat for me

still they are all coming for lunch today makes their mum and me happy suspect they are keeping an eye on me

all the best Tom