PSP and iron

[sasmock]

Wondering if anyone else has iron balance problems in their family? My dad has the H63D genetic mutation, which is strongly associated with neurodegenerative diseases and processes such as tau phosphorylation (which as we know, drives PSP). This gene causes iron to accumulate in the cells (including brain). I've got the gene too - only one copy. My blood iron is always high and I've just been diagnosed with haemachromatosis. I've looked back through my dad's results and his iron has been high too. A haematologist laughed me out of the room when I asked about this, so did the neurologist. Yet I've just come across an article by the Iron Disorders Institute who quote the Connor et al study as linking iron storage problems with neuro issues. Wondering if anything could have been done, by frequent blood draws, etc. Obviously too late now, but can't help thinking this info could be relevant to others out there, for whom it isn't too late. My dad's dad had liver cancer and his brother has diabetes - both linked with iron storage in the soft tissues. It's so interesting, and I'd love to talk to someone about this, but it appears medical professionals aren't interested, sadly!

[Hidden]

Before dad was diagnosed with CBD he had extremely low blood iron. It has since stablized and he is no longer taking supplements for it.

Ron

[abirke]

We donated B's brain to CurePSP institute. If B had this problem, they would have been able to detect it(?) Also he used to give blood and it didnt' seem to have any problem with it though I am sure they test for very few things...but overly iron rich could be a factor in doantion....

As I have said before, you are your loved ones best and maybe even only advocate! You might want to talk to curepsp.org and ask them what they think....It certainly sounds like your dads genetics could be a cause of his neurological problem.....

Get with someone who knows what PSP is and ask them this question....I too have a fear for my kids.....I have epilepsy and my husband had PSP....what does that mean for our kids neurogenetics.....are they a carrier of something....will these two unrelated though serious neurology make for disorders in them? so far so good but I was in my 20s and B was in his early 50s..... keep looking .....There is someone out there who will hear you.

Sincerely,

AVB

[Marie_14]

Sasmock you are right to ask this question. People are not routinely checked for high iron levels. As you say it can damage internal organs. I have just read something where it is linked to Parkinson's and Neurodegenerative diseases!!

Have you got Celtic blood? If so that would explain your haemachromatosis. However they have also found it in other White Europeans (English & Scandanavians) or those who are descended from that group.

Many years ago whilst on holiday in Ireland I saw a programme on this and how people die from it because it's just nit found not found. I told my husband about it and we were quite worried. However like everything else life got in the way and we didn't pursue it!

When they couldn't find what was wrong with his blood I asked the Haematologist about it and as in your case he looked at me as though I were mad!

So you know you have it. What will they do to treat it?

I have just been reading about it and you are right there is a definite link to the brain being affected. Why on earth are they not doing clinical trials on this? I find it very worrying.

Incidentally Andrea it us also linked to Epilepsy, and MS to name another couple of things. So more links to what it could be doing to the brain?

Read what it says on the internet. Having seen that programme all those years ago I am now wondering if where you or your ancestors came from matters more than we thought with this condition.

They were very focused on heart disease in the programme I watched. No mention if the brain. It is included in certain articles I have just read though!

Marie x

[Marie_14]

See Epilepsyontario.org.you asked us.

Can't copy and paste the link. It confirms both epilepsy patients have more iron than those who haven't and also the link between neurodegenerative diseases!!

Marie x

[psP556]

Hi Sasmock. My Mum has PSP and is on iron supplements for low iron, I don't know what her iron levels used to be though. Myself, I have quite often had high ferritin levels and been checked for haemachromatosis, which I didn't have. (I also have chronic migraines which are the probable cause of brain lesions that I have) Mum is also on thyroxine for her thyroid and is a type 2 diabetic. I wonder if there are links among it all. I dread the thought of getting it. Coeliac disease is also rife in my family. I wish the cause of PSP could be found, everyone talking about it is a good start. I feel so sad for my Mum, and everyone with PSP.

[sasmock]

Thank you so much for your replies - frustratingly, I have to go out all day, when all I want to do it sit and READ READ READ! It's so interesting - can't wait to get back to it!

[Greenie11]

I don't post often I'm afraid, but just saw your post. We very sadly lost my mum to PSP last year - she also had haemachromotisis. I couldn't tell you if there is a link though.

[Crystabella]

My mum has Cortico Basal Degeneration and also an onging problem with low Ferritin requiring regular injections.

[NanBabs]

Hi Sasmock,

My husband has vitamin B12 deficiency (also sometimes called pernicious anaemia) for which he needs regular injections.

xx

[johns65]

My husband has PSP. We are from Southeastern Minnesota USA. Anyone out there that lives near us that has been diagnosed with Progressive Supernuclear Palsy please respond. Thanks.

[Julieandrog]

Rog had a very high end of normal circulating heamoglobin level