Any other people diagnosed with psp have high iron stores?

[daughter_Julie]

Just wondered as dad had a very high iron level and I've just been reading it can become toxic and destroy organs (such as the brain).

[dorothy-thompson]

Hi daughter_Julie

My husband was a blood donor for years but on many occasions he was unable to give blood because he was told that his iron content was too low, don't know what it all proves though.

Dorothy t

[peterjones]

hi strelley can to much iron stored in your body be bad for you

mate can it destroy other organs as well as the brain Julie ask the question mate and also would like to know for myself but if yiu have just put your slippers on and settled down for a well earnt rest mate maybe some other time when its more convienient hows mrs strelley today mate starting pick up again yet \\ I hope so peter jones queensland Australia psp sufferer

[Hidden in reply to peterjones]

Peter.....Thanks for asking about my wife . She's a bit more slower, more fatigued and her voice is very soft most of the time now. Sometimes I find it hard to understand her because she's at the stage of finding it more difficult to find her words or organise her thoughts, and then when she finds the words she wants to say, her voice is very weak and I'm struggling to hear. It can be so frustrating for both of us but we try and approach it with humour!

Cheers mate

T.

[jimandsharynp in reply to Hidden]

Strelley, I've become an expert on using the mute button on the telly. That's the only way I have a prayer of hearing Sharyn.

[Hidden]

For Mr Jones......this is a big subject and I don't know much about it.....so the following may NOT help anyone!!!!

Iron is stored as ferritin in cells (particularly liver). It's carried in the blood to various organs attached to a protein and is called transferrin. There is a genetic disorder called haemochromatosis that causes iron to accumulate in many organs of the body - usually the liver and causes cirrhosis, but also brain and kidney etc. The ferritin levels in the blood "hit the roof" in this condition, and a blood test will identify it. Treatment is usually by withdrawing blood at regular intervals.

In essence both high and very low levels of iron can affect brain function (low levels in infants!).

The brain areas damaged in Parkinson's and PSP (the substantia nigra and globus pallidus) already have normal high levels of iron.

The brain obtains iron from being offloaded from the transferrin. Iron (depending on its form) in the brain has a normal and healthy function (oxygen transport, myelin production, neurotransmitter synthesis).

There has been a lot of research as to whether iron overload is a major factor in Parkinson's. It's been shown that the ferrtin in the brain is slightly different from that in the liver. It is thought that under certain conditions the ferritin "leaks" a bit of a type of iron that causes oxidation (liken it to "rusting") and damages the neurons.

Most recent researchers have found higher levels of iron (in the substantia nigra) in Parkinson's compared with controls (using MRI and autopsy brains - mostly found in Lewy bodies)

Significant iron content has also been shown in some PSP brain autopsy cells.

The bottom line is the fact that deposition of iron in the brain is associated with certain brain damage (in Alzheimer's. PD, MS). It's still not known whether excess iron contributes to brain tissue damage or whether it is only a secondary event that happens when damage occurs for other reasons. It seems likely to be the latter in most cases. It certainly adds to the process of oxidation (rusting) that is one aspect of neurological damage.

I doubt if the above has answered daughter_Julie's question.

(Other excess "metals" can cause brain damage, like mercury and copper. I used to be involved with tests in an hereditary disease called Wilson's disease - where there was excess copper accumulation. This had several symptoms similar to PD and PSP.) ..........now I'm rambling in nostalgia!

Cheers

T.

[peterjones in reply to Hidden]

thanks for another in depth report mate im much obliged to you and I owe you one im sorry to hear that mrs s is bit off but she will pick up again i'm sure mate so do not start worrying yourself unnecessary your doing a good job my wife asks me about 5--6 times what did I say it is frustrating I know for me and for her but you should hear me on the phone mate its a delight I hear them on the other end saying you take this one or speak up mate I cant hear you or I cant understand you then I try and tell them ive had a stroke because its easier than trying=to explain psp which was true \\. but I am over that now

that leaves me with psp to get over \\but I must admit now i let my wife answer the phone rather than get half way through the conversation and I don't know what the hell they were on about and give the phone to my wife and say ITS FOR YOU\\\\ WELL STRELLEY I HOPE YOUR WIFE PICKS UP VERY IM SURE SHE WILL MATE

BEST WISHES TO YOU TAKE CARE PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERE THANKS FOR YOUR TIME THIS EVENING

[cabbagecottage]

My husband and his half brother have Parkinson's , Recently their nephew has been having issues with having some strange moments been checked for stroke etc . now they have discovered to high bloods and has been having regulars Blood letting I think it Is called .

I have mentioned to his parents that you can have so many different symptons with Parkinson's and they are not recognised by a lot of doctors .

Very interesting subject

[SharonAB]

Dear Julie,

I have haemochromatosis which was picked up last year because I was continually over tired.

Ironic literally !! for me if my husband didn't have PSP I probably wouldn't have gone to the Dr's for myself - as I my primary reason for going was to get a referral to see a counsellor - instead the GP sent me for blood tests - so in my case it was picked up well before any damage to organs etc was done.. *Blessing in disguise!!

- Have you asked the Dr about getting checked out yourself? and the rest of your family? as there are genetic links - but depends what type etc on likelihood of immediate family being the same- percentages, ages.. - specialist or GP can explain better than I can...

I am finding out that there is quite a bit of ongoing research in Australia for high iron & its effects including - possible links to melanoma's, neurological illnesses, depression, and ..and ...

And some research seems possible due to the restrictions our govt had on immigration at one stage (white Australia policy) which now means there's some pretty good data being made available to research with Irish and English settlement...

Regards,

Alana - Western Australia

[jimandsharynp]

No issues with iron in my wife's case. I think the cause is pretty complex, even for those doing research, or we would know the cause by now. Disease has been around a long time but given a name in 1960s. They may never figure out the cause before they figure out a cure or way to slow or stop it. IMHO

[Peter3]

Very interesting area of discussion. When my husband was undergoing his initial investigations one of the few abnormal results he had were raised ferritin levels. The neurologist dismissed this as being insignificant. The ferritin levels have never been checked again.

The mystery of the cause continues.

Peter3.

[daughter_Julie]

Peter3, it was the only abnormal result for dad too, it was in the hundreds I seem to remember, I noticed it because my level was about 24, and dads was 320 or so. I guess I just jumped on it because to me it stood out. Let's hope they can find a cause one day and put our minds at rest.

[goldcap]

OK this is all too weird. My hubby also had an abnormal ferritin rate. I remember lecturing him because he takes a ridiculous amount of supplements and I have always worried about toxicity. I think we are on to something here.

[peterjones]

HI STRELLEY JUST MAKING SURE YOU GOT MY FIRST EM TO MRS S

WELL MRS S WHAT IS IT TODAY THE BIG ONE OR STAYING WITH THE SMALL ONES\\ WELL HERES THAT SONG FOR YOU WISHING YOU ALL YOU WISH FOR YOURSELF HAVE A GREAT DAY ALTHOUGH IM NOT SURE WHICH DAY IT IS BUT NEVER MIND IVE GOT TO GET THIS OUT QUICK BECAUSE NOT SURE OF MY PUTER PLAYING UP A BIT I WILL RAISE MY GLASS TO YOU MRS S HAPPY BIRTHDAY TO YOU\\\ HAPPY BIRTHDAY TO YOU

HAPPY BIRTHDAY DEAR MRS STRELLEY HAPPY BIRTHDAY TO YOU PETER JONES Q.L.D. AUSTRALIA FELLOW PSP SUFFERER