Haemochromatosis and now low iron
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Hi.. first post. I'm female, early 60s who was diagnosed with homozygous haemochromatosis over twenty years ago when very high iron was discovered. I had all the usual weekly venesections until things were managed, and then three monthly ones to keep it under control.
This all worked well, but now my blood tests indicate I am iron deficient. I haven't had a venesection in the past year but still my iron is low. I know there must be an underlying condition and it's being looked into, but I'm wondering what it means, if anything, that I have this disease and yet my iron is going down. Does it make it worse because I usually store iron, or doesn't it work that way? The doctors I've talked to here (in Australia) don't seem to have any idea of this combination of issues.
0 likes, 8 replies
Chelle69 Kriya
Posted
Hi Kriya,
I had this same problem last year after I was de-ironed and then in maintenance. My ferritin dropped to 21 from 299 . I made an appt to see the GP as I felt quite ill with terrible fatigue, they took some bloods and one of the GP's at the surgery prescribed me iron tablets, not realising that I couldn't take them with having HH! My iron dropped constantly over a period of about 11 months. I still don't know the reason why my iron kept dropping every few months, I can only guess that I had been de-ironed too quickly?! I do hope you find the reason behind what is causing your drop in iron and hope all goes well for you.
Take care and do let us know how you get on! x
Kriya Chelle69
Posted
Hi Chelle69,
thank you.. That's very interesting and gives me hope that it isn't some underlying issue.
I've been on regular maintanence for so long that it seems odd for it to be related to that, but who knows?
I have had some abdominal issues so there is a chance that could be causing it.
I'll certainly let you know the outcome.
sheryl37154 Kriya
Posted
Your haemoglobin is the indicator for iron deficiency. Your problem is most likely caused by an underlying issue and you should by assertive about your dr finding the cause. It is not normal for your ferritin and serum iron to drop without vx, UNLESS your HFE genes were homozygous H63D which is a non aggressive gene.
My husband is homozygous H63D and after he was de-ironed it never rose again. He was investigated for possible colon problems (e.g. bleeding from the bowel) but all was well. I am homozygous C282Y which is aggressive and my haemoglobin is always high and my ferritin and serum iron is now contained within low ranges, as long as I continue to have vx every 3 months. I have been venesected since 1998 starting off weekly,
If there is no underlying problem (all having been checked out), and you want to increase your levels because you don't feel well, try taking Vit C etc with your meals and eliminate calcium with your meals (have it after food has been digested). This is better than taking iron supplements. If you want more official advice, contact Haemochromatosis Australia, but be prepared to give more info than what you have given here. Haemochomatosis is more complex than that and different for each
person.
Also what is your TS%? This is important to know too.
I have found that it is better to have a haemotologist monitor levels rather than a gp who does not really have the experience and knowledge to do so.
Kriya sheryl37154
Posted
Thank you sheryl,
I certainly started to be assertive once I discovered the issue. My doctor was glossing over it, but one of the nurses saw the results when they first came in and rang me to say I should make an appointment. Otherwise I could well not have found out.
It has only been noted as 'mild deficiency', but I've been concerned about fatigue and headaches for weeks and am wondering whether this is the reason.
Results are:
Iron 8 umol/L (10-33)
TIBC 43 umol/L (45-70)
Saturation 19% (16-50)
Ferritin 9 ug/L (20-290)
So it's not very low, but of concern to me as of course I usually store iron.
I must admit I haven't been very pro-active about managing this disease as it's been well under control up until this point. I was so pleased to have found out about it as I was certainly suffering the effects of iron overload all those years ago (a very early hysterectomy added to the early diagnosis).
I have been taking some vitamin C as I have the beginnings of a cold and thought I could get away with it since my levels were low. I'm loathe to take iron supplements. It just feels wrong.
sheryl37154 Kriya
Posted
Hell descended on me too when I had a hysterectomy. It took the breakup of my hip bones to get a diagnosis (after 9 years), plus a lot of other damage that eventually prevented me from continuing to work. My dr was in denial about HH and there was no google back then to search. So now I know to be much more assertive!
You did not mention your haemoglobin. Your iron studies levels are low and I have had those occasionally and my haemotologist says it is ok so I continue to have vx. There comes a point where they never get any lower.
By the way, you are still eating normally are you? E.g. not reducing or eliminating red meat and other supposedly 'high' iron foods. It is not necessary - and what it affects is your haemoglobin. Your body does require iron. The only things you should avoid are the iron fortified foods, and clams which I have seen has an iron content so high that I think it is a typo. I do avoid liver which is the next highest, but mostly because my husband would refuse to eat it anyway. Bacon and liver with gravy was part of my diet as a child, so I still think about it.
Years ago, I visited Boston and ate heaps of clam chowder - yum - I can't remember feeling any worse for it because I was always struggling with fatigue anyway. I still do - I have short days. I think too much damage was done to the mitochondria of my cells because of the late diagnosis. Haemochromatosis researchers in France say to take CoQ10 and Vit E for that.
It took until fairly recently to get my TS% down. These French researchers report that high TS% after more than 6 months on maintenance is harmful to the body. So, whereas some gps would stop or delay my vx because my ferritin had reached the magic number, I have continued to have my 3 monthly vx to get the TS% down with the blessing of my haemotologist because he knows low ferritin and serum iron is not harmful.
I have to take a 500mg Vit C (melt in the mouth) last thing at night or I will wake up with a sore throat because as you know our immune system is compromised. So if Vit C increases iron at that stage of the day, then I would rather have that than getting a cold or flu which is worse for our body (and sends our ferritin up high because of the inflammation it causes!).
Let us know of any development that may be found.
Kriya sheryl37154
Posted
I don't know my haemoglobin.
As for diet, I was diagnosed recently with IBS but the jury is out as I get such severe abdominal pain, so I'm waiting on tests to indicate internal bleeding.
As for meat, I'd been a vegetarian for about thirty years, but when I had to make drastic alterations to my diet to stop the pain I introduced red meat which I've been having for the past four months. That's another reason I'm so surprised by the results.
tom_70042 Kriya
Posted
great advice here as usual i avoided all red meat for six months until i took the plunge again after reading SHERYL advice
GPs are not great on our rusty issues never discuss issues but my haematologist is brilliant
My problem these days is walking any distance beyond 1.5 miles hips and back aches GP puts it down to all those marathons and golf i played !! ridiculous
Had to smile at the reference to liver and bacon as an IRISH family had lots if it growing up went off it but found it again later in life love it now but Anne wont cook it anymore , so when we are out in restaurants she always has it as i watch on enviously
best to you all stay healthy
sheryl37154 tom_70042
Posted
Hi Tom, go on, have some liver and bacon once in a while, particularly if you are de-ironed. Don't forget, a vx is the equivalent of 50 steaks, and liver (same weight) iron is equal to ❤️ steaks.
Walking is extremely painful for me too but I had to have both hips replaced because of delayed diagnosis and one was botched throwing my hip out of alignment. When I have to do a lot of walking as in when we travel to France, I take an Endone (script) beforehand. Otherwise I avoid it as much as possible. Just walking from car to shops can be too much at times.
In a way your gp may be right, as I have found from talking to others that joints overused in our previous life, are the ones most affected by HH.