Iron levels

[Astra7]

I am wondering if my Parkinson's was caused by 2 iron transfusions I had around 5 years ago, with my first symptons appearing (in retrospect) around 4 years ago.

Has anyone else had issues with iron levels that have required treatment?

[Hidden]

Hi Astra7 , yea , just about all of us have at least one time tried to link some coincidental event with our PD onset. Sure it is possible I guess , because we do not know what causes PD so Iron is as good as Haily's comet or intestinal virus or the thousands of other things that have been suggested. I am not trying to make fun or put you down but that is reality that we would answer for every possible cause at this point, could be but probably not. Now others will write in absolutely convinced that exposure to insecticide caused their PD but they will then acknowledge that no study has validated their claim and there is no smoking gun.

Research into a cause has dropped off and is being replaced with finding a cure or reducing symptom severity. You would think that a massive effort spent finding a cause would lead to a treatment or cure but it did not. It has been shown by studies that by the time that your PD was diagnosed that probably 70% of the damage had already been done and that you have had PD for a very much longer time than you believe. You are proceeding along a path that we Parkys all walk. A very confusing and difficult trail but we will walk with you, as long as we can . There are things you need to understand and prepare for and your efforts in finding a cause might be better spent finding how you will deal with it. You will meet some nice people here who can help.

[racerCP in reply to Hidden]

Interesting and valid comment. Yesterday I went to a michael.j fox Parkinson's convention in Manhattan. There were various speakers and when the question and answer period came there were many comments about causes comma about alternative medications come about vitamins and nutrition. What is obvious when you look around the room these are well nourished healthy looking people with exercise probably most of their lives so who knows and the experts mostly don't know thank you for your comment

[Astra7 in reply to Hidden]

I guess you are right. It's just very frustrating when at 52 you think you will be lucky to get 10 more good years. I don't think enough of us have it for people to be searching desperately for a cure, and the motives of others are not necessarily pure.

[4000Nights]

Yes. I had hemochromatosis which is extraordinary high iron several years before I was diagnosed with PD. I never connected the two.

[nourilo in reply to 4000Nights]

How did you treat your hemochromatosis? I'm just asking because I have the gene for it.

[silvestrov in reply to 4000Nights]

Prevalence of haemochromatosis gene mutations in Parkinson's disease

"This study does not indicate increased susceptibility to Parkinson's disease in HFE gene mutation carriers in Norway."

ncbi.nlm.nih.gov/pmc/articl...

Of course, there is more than 1 form of hemechromatosis (HCS). Secondary HCS is when excessive iron is consumed and the body cannot rid it through normal biological processes thus iron levels dangerously rise in the body.

Iron has a definite role in PD but the specific relationship between iron and PD is still being written. This study has shown that high or low iron levels may contribute to PD:

"The study confirms that both iron deficiency and toxicity are linked to the specific genes and neuronal suicide that lead to dopamine shortages responsible for development of Parkinson's."

sciencedaily.com/releases/2...

I have the trait of Beta thalassemia - Mediterranean or type 2 anemia, which is characterized by small and irregularly shaped red blood cells. Fortunately I do not require blood transfusions for the condition.

[4000Nights in reply to silvestrov]

Interesting! Nothing I can do about it now but interesting.

Fortunately I only had to give blood a couple times a year.

I have another unrelated question. I was on statins for high cholesterol for years. I stopped taking them several months ago and my PD symptoms became decidedly less... almost non-existent. Any thoughts on that?

[silvestrov in reply to 4000Nights]

Statins and PD are debated and controversial. One study stated that quitting statins was associated with a higher prevalence of PD:

Discontinuation of Statin Therapy Associates with Parkinson's Disease: A Population-Based Study

researchgate.net/publicatio...

Statin_Therapy_Associates_with_

Parkinson's_Disease_A_Population-Based_Study

More recently, researchers found in an atherosclerosis study that statins are associated with a higher risk of PD:

Statins, plasma cholesterol, and risk of Parkinson's disease: a prospective study.

"Statin use may be associated with a higher PD risk, whereas higher total cholesterol may be associated with lower risk. These data are inconsistent with the hypothesis that statins are protective against PD."

ncbi.nlm.nih.gov/pubmed/256...

From studying the relationship between cholesterol and PD I have concluded that low cholesterol is a risk factor of PD. I have read all the studies on the subject and all but 1 associated low cholesterol with PD. Several noted the relationship of low cholesterol and high brain iron with PD.

Statins inhibit cholesterol production and your hormones are derived from cholesterol. In men, low testosterone is associated with PD and statins lower testosterone levels. My father went on a statin and became violent and had to quit taking it. Here is the most recent PD 'serum lipid profile' study:

The serum lipid profile of Parkinson's disease patients: a study from China.

CONCLUSIONS:

"PD patients are with lower levels of total cholesterol, LDL-C, HDL-C and TG than controls. Lipids may be a marker of PD severity."

ncbi.nlm.nih.gov/pubmed/253...

[Boyce3600 in reply to silvestrov]

Hi, Sylvestrov..good to hear from you. How r u in your month(s) off responsibilities?

[silvestrov in reply to Boyce3600]

You are hearing from me because the computer which I was working on my documentary has tanked. I think it is a hard drive problem and until it is fixed/replaced I cannot finish it. Too bad because I was making headway. I am typing from a backup computer and I sent for a replacement graphics card and if it improves its efficiency, I may be able to work on the doc. I am fine just in limbo....... that is how things go....

[Boyce3600 in reply to silvestrov]

Oh gosh!!

When something like that happens, it is frustrating to say the very least. I get angry at the computer, but how ridiculous is that. They are only good when they work, right? Fingers are crossed that the problems get corrected quickly. You have much to offer your audiences.

[silvestrov in reply to Boyce3600]

Thanks Boyce,. Yea it is frustrating and computers can drive anyone crazy. I think I am going to have to scope out a new or rebuilt hard drive. What can you do? Oh well time to pull the side panel off & look at the HD.... Blah....

[999---666 in reply to silvestrov]

dell sells refurbished computers. you might want to check it out. I got one with all kinds of bells and whistles.

[silvestrov in reply to 999---666]

I think the hard drive is shot and ordered a refurbished one for 45 dollars. Now I need to order a windows based operating system, say Windows 7, to run my editing program. I am trying to repair the computer for pennies on the dollar. If this fails then I will have to purchase something.

[Astra7 in reply to silvestrov]

That's very interesting about the low cholesterol . Mine is very low and I always thought that was a good thing. Do you think making it higher would help?!! Chocolate binge! Any excuse....

[silvestrov in reply to Astra7]

There definitely needs to be a clinical trial with PD patients who have low cholesterol divided into 2 groups: normal diet, higher cholesterol diet, and see it it has any difference on PD symptoms.

Considering apoe2 gene variants, a gene associated with low cholesterol, are more prevalent in PWP than controls, this idea needs to be investigated.

APOE-[epsilon]2 allele associated with higher prevalence of sporadic Parkinson disease.

ncbi.nlm.nih.gov/pubmed/152...

[yellowhumpy in reply to silvestrov]

I look at iron in the context of the recent research on the microbiome and PD from Dr. Filip Scheperjans. Certain bacteria are in higher presence in the PD gut and there is less diversity. Following that line of thinking, I look at fermentation chemistry. Many bacteria use iron as a growth medium. So having a higher load of iron could possibly provide more iron for certain bacteria. On the flip side of the equation some people with PD have anemia. This suggests to me that the gut bacteria have iron acquisition strategies that are sequestering the iron from the body for their own use resulting in anemia. I think the answers are in our guts.

[silvestrov in reply to yellowhumpy]

Interesting, Borrelia burgdorferi, the causative agent of Lyme disease/borreliosis, is a bacteria that does not use iron:

"It is one of the few bacteria that can survive without iron, having replaced all of its iron-sulfur cluster enzymes with enzymes that use manganese, thus avoiding the problem many pathogenic bacteria face in acquiring iron."

en.wikipedia.org/wiki/Borre...

I did read the following article and know it has a bearing on PD and the PIGD subtype:

Gut microbiota are related to Parkinson's disease and clinical phenotype.

"The relative abundance of Enterobacteriaceae was positively associated with the severity of postural instability and gait difficulty."

ncbi.nlm.nih.gov/pubmed/254...

There are many people who are trying to implicate viruses with PD and they may, to use cautious scientific jargon, have a role in weakening the immune system and promote the possibility of getting PD. But I put more stock in bacteria because of cases of parkinsonism directly related to bacterial infection (Salmonella, M. tuberculosis, B. burgdorferi, C. Diff...) and infestations of common bacteria like H. pylori in the stomach and Enterobacteriaceae (Salmonella, E.coli.....) in the gut.

[Astra7 in reply to yellowhumpy]

Very interesting. I wonder if it is possible to get our gut bacteria looked at to see how healthy it is. I remember reading something recently about people being cured of something by having healthy gut flora of someone else put in their gut. Sounds gross but if it works... I'll see if I can find what it was.

[999---666 in reply to silvestrov]

bit off subject, but if anyone knows, it's you. what is the difference between dopamine depletion in pd and dopamine dependence of cocaine addiction?

[p-oui in reply to 999---666]

Interesting question

[4000Nights]

You just give blood regularly.

[Marcomando]

There is a trial going on at the moment (details on the MJFox site) testing a drug that chelates (ie strips out) iron as there seems to be some evidence that this may slow progression.

foxtrialfinder.michaeljfox....

I'll know more later today as I have an appointment to enrol in the trial.

[Astra7 in reply to Marcomando]

Interesting. Please let me know more when you do.

Do you have high iron?

[Marcomando in reply to Astra7]

Not that I know. I'll be tested when the trial starts. As I understand it pwp do have higher levels of iron in their brain (based on post mortems!) but they don't know whether this is cause or effect... Anyway I'll know more as the trial progresses and will keep the site informed - although I won't necessarily have the drug I may get the placebo...

[p-oui in reply to Marcomando]

Definitely keep us posted! Good luck!

[p-oui]

Perhaps old news to those on the board but it appears that PWP tend to have low iron and also to have restless leg syndrome, RLS. Do many have RLS out there?

[Astra7 in reply to p-oui]

No restless legs except on the odd occasion.