Memory loss ?

Umm ... forgot!

Seriously, my once very keen memory and sharp mind has not got back to normal.  25 years after onset (9 undiagnosed and untreated - that was the worst), I lived in hope that all would get back on track.  Haemotologist insists that now that I am 'de-ironed' and have been consistently for 10 years, there should be no more problems.

I had fatigue and body pain for all those years after diagnosis.  Do you still have fatigue?  Possible cause of foggy brain.  HH does affect the hypothalamus (which controls our automatic systems, including sleep cycles), and the pituitary gland - our hormones, reduction of which (testosterone/oestrogen) can cause foggy brain.

But really, there is evidence that excess iron deposits do get into the brain.  The brain does need iron to function - but as usual, too much of a good thing, turns bad.  The evidence is mostly from autopsies and MRIs, but scientific research has not been able to prove it yet.

I have had some breakthrough after commencing 100mg of aspirin per day.  Fatigue and body pain reduced considerably.  But at the same time I tried a new oestrogen which ultimately was not working, and as the symptoms are very much the same as those of HH, it took 4 months for me to realise the cause.

It has now taken me another 6 months to get that back on track, but not quite right yet.  Have you found you need a testosterone supplement?  If that has not been checked, and you are low (which HH does to us), you might find you will pick up with a regular dose of that.

At same time, have your vit B12 and vit D checked.  Insufficiency in these cause huge problems to us.  You may has well ask dr to check all your pituitary gland hormones as well.

I am talking from not only my personal experience but from my husband's who also has HH, as well.

 

Yes, I forget everything, I think I am a little better now that I am at 28, what about you?

I haven't had a venesection now since October. I'm due back at the hospital next month for blood tests to see how my ferretin levels are. I was below 50 in October.

I'm still feeling tired and having trouble sleeping. I've also started having bad night sweats , has anyone else experienced this.

Hi Dillinger,

I also have night sweats and very tired all the time and unable to sleep.It has got to the stage that my doctor has prescribed clonazapam to help me sleep at night. I also have memory problems, and have been told that I have a problem with my working memory. I forget what I was going to do a lot and also forget what I am actually talking about sometimes and have to be reminded. It's an absolute nightmare. My ferritin levels have been fairly constant between 20 to 40 for over 10 years but my last couple of ferritin counts were 130 &150. Not sure what has caused the jump but am going to consultant today. I would like to say that things get better once you have been de ironed but my experience is that nothing has improved much and some things like the memory problems and abdominal pains have actually got worse.

Try to find a Doctor who’s willing to keep your ferritin level UNDER 50 (40 even better), (or will phlebotomize when Fasting Transferrin Saturation level starts to rise again.)  I’ll continue here with a general explanation of TS.  NOTE: I AM NOT A MEDICAL PRACTIONER, I'M JUST AN INDIVIDUAL SHARING MY OWN HEMOCHROMATOSIS OBSERVATIONS AND RESEARCH.  THERE COULD BE ERRORS IN MY RESEARCH SO PLEASE CONFIRM ANY COURSE OF TREATMENT WITH YOUR OWN MEDICAL DOCTOR.

The Transferrin Saturation test is usually used as a diagnostic tool for HC, and then afterwards IGNORED. Oh but it shouldn't be! Iron is an absolute Free Radical Poison in your bloodstream if not properly BOUND. Transferrin is the binding agent in our bloodstreams which carries iron SAFELY to where it's needed (to build hemoglobin, etc). 

If your "Transferrin Saturation" (TS) test shows 70%, what that means is, 70% of your available Transferrin is being USED at that moment, is presently BOUND to iron in your bloodstream. Now that 70% is much higher than the general population... Most people would only get that high of a count if they just ate a nice juicy steak. But YOU have that fasting. NOW THINK... You eat a juicy steak and all of a sudden--there's not ENOUGH transferrin left in your bloodstream to properly bind it. If you were to take a TS test right then--it would probably come in flagged in ALERT status. Even above 80% means loose binds are falling... But if you get up to 100% (which you would in my example), that means you definitely have at least SOME iron going free radical through your blood stream. How much is unknown--because they can't measure above 100%!  Probably LOTS of free radical iron after a high iron meal... a POISON that's destroying cells randomly wherever it goes--Including brain cells. The immediate symptoms of this iron poisoning that happens to us perhaps on a daily basis, for me is extreme fatigue, nausea when it’s really bad and a feeling of “not wellness”, and extreme brain fog.

Incidentally, this is why Doctors can't prescribe TOO MUCH iron to anemic patients. You'd think the more the better, right? NO because it can't be safely transported in the blood. If you have a anemic friend who takes iron pills--warn them! Two pills is NOT better than one! Even an iron deficient person can't safely take too much iron. 

Ok but you & I already have too much iron (and often low transferrin counts as well--just the transferrin itself (not the saturation, which for us is high for sure). Doctors worry about the iron build up in our organs--which is what's been STUDIED and proven and that's great that they try to get it out by giving us phlebotomies. But they have no idea the TS issue is causing us brain damage because it HASN'T been studied, researched and proven yet. But we ALL KNOW we have brain fog! 

Additionally, the phlebotomies themselves cause transferrin saturation episodes!  We need them, but there definitely can be this side effect. 

Phlebotomies tend to make the body “OVERREACT” to the blood loss. It's as if the body says, "Wow! Blood loss! Let's take iron out of storage and rebuild this blood NOW!!" Problem is it takes TOO MUCH iron out of storage--And all of a sudden you’re in a TS ALERT status! (Sometimes 100%, I’ve documented by blood test). No Doctor tests your blood AFTER a phlebotomy--they test BEFORE and that's why few even know this is happening. (But my hematologist confirmed it is a normal phenomenon, but there’s nothing they can do about it so they ignore the issue). I'm convinced that's (one reason at least) why some people feel bad after phlebotomies, and have weird bad symptoms. AND why often their arthritis and some other symptoms of HC IMPROVE by the end of their series of phlebotomies (stored iron issues)--but brain fog DOESN'T unless the numbers are brought down very low (a TS epidsode issue). NOT to say we shouldn't get the phlebotomies, we have to.  Otherwise the iron build up slowly kills you.  But TS episodes during phlebotomies can or do occur.   There is some good news though...

Once you’re below 50 stored iron (ferritin), if you keep it under 50, you’ll may gradually recover from many of your symptoms!  The brain and some of the free radical damage can start to heal.  AND YOUR TS LEVEL FINALLY DROPS!—So that the saturation episodes happen much less frequently and less severely!  THAT’S WHY you start to feel bad again when your numbers start climbing after your last phlebotomy—Even if you’ve gotten it down near 50!

For some reason, once your stored iron count goes low enough (for me about 40 Ferritin), the body stops releasing iron from storage so readily, and your typical fasting transferrin saturation level will drop.  Mine goes from 61% down into the 30’s!  But if my Ferritin goes above 50, it’s back to my normal 61-63% and fatigue and brain fog issues resume.

By the way, Vitamin C (and MSM) also can release too much iron from storage! Vit C not ONLY causes you to absorb more iron from your food--but ALSO somehow effects RELEASE of iron stores-- elevating TS. I tested this only once so far. Took 1000 mg Vitamin C on an empty stomach during the night; TS test in the morning. Where normally my fasting TS is 63%, that morning it was over 80%. Interesting (msm did the same thing). So I'm planning to do more "self-testing" soon... You can also do your own testing by a prepaid Transferrin Saturation test (or TIBC) (only about $30 at online blood testing sites; just start ordering tests yourself and be your own health advocate). The doctors usually only pay attention to the stored iron. 

Diet--it DOES matter keeping diet low in iron, because high iron meals can send you into transferrin saturation episodes! But if your counts are way down (Ferritin below 50, or whatever number that for you finally drops your fasting TS count), you can get away with a lot more.

They say coconut oil and fish oils help to heal your brain i think...