Phlebotomy anyone?

[Bethr]

This is an interesting side thread on haemosiderin and CCSVI. It's all connected to the iron metabolism.

http://www.thisisms.com/ftopicp-92058.html#92058

[katie45]

Hi all, read this entire thread and can say I have had every noted effect listed here..from high cortisol(nearly killed me) to a pituitary tumor.kidney stones, high cholesterol.osteoporosis,ibs,adrenals ,skin rashes,bronzing without sun,..et al

I have no doubt whatsoever of the iron problem being my ms...Am a lttle worried about the effect a phlebotomy (full) would have being in not so great shape at this point, and even more so if the dr won't let me have them! or the genetic test.I am taking my dghter with me to the dr, ,in hopes
they will listen to her if not me...also will have a witness to him turning me down which will not surprise me.In that case, I have to find a way to do home phlebs.M, if you find any info re; supplies please share?

[ForeverSpring]

My daughter works in the medical field and sent me a link for the page on their guidelines for Hereditary Hemochromatosis. Here is an interesting point from that reading:

Up to 15% of hereditary hemochromatosis patients may carry neither gene or will be presumed to be compound heterozygotes of one C282Y or one H63D mutation and some other, yet to be identified, mutation.

Fifteen percent is a fairly large group! Who knows what my H63D mutation is paired with?

My adult children are planning to undergo the iron-overload testing, too. (Their father, like me, also has Irish heritage.) My oldest son told me that he has had the arthritis symptom in the first three fingers on each hand for about 10 years and always thought it odd.

I have an appointment with the doctor tomorrow to review my lab results and hopefully set up a phlebotomy.

ForeverSpring

[ForeverSpring]

Katie45,

It is my understanding that the amount of blood drawn during a phlebotomy is dependent upon the patient's condition. If you can withstand only half the amount,for example, they will do that. It would just take longer to bring down the overload levels.

I hope that you will be able to give it a try.

ForeverSpring

[ErikaSlovakia]

Hi all,
I must correct an information.
I have my blood tests results in my hand. My doctor just made a little reading mistake.
My iron (Fe) in blood ist too high 29,8 not the ferritin.
My ferritin is lower than normal 10,4.
My transferin is normal 2,5 as she said last time on a phone.

I will have to see my GP. I have no clue why is my iron that high.
Erika

I saw my GP today. The results are very close to normal so I do not have to worry at all.
Erika

[Merlyn]

Erika-I am not questioning your Dr. really... okay, maybe I am a bit. If ferritin is too low, and iron in the blood is pretty high, I would not consider that particularly great/normal... what I am starting to wonder is whether these doctors look at the gestalt of the iron panels... it seems to me that things should be in balance. That iron in the blood should not be high especially in relationship to low ferritin... are you officially anemic? That is pretty low ferritin, if you are not anemic you are pretty close. It is amazing how many people say they are anemic, or have pernicious anemia... I really think we need a very large MS population tested for iron abnormalities. Do you take any kind of iron supplementation? Thanks for any answers!

[Merlyn]

http://emedicine.medscape.com/article/177216-overview

The gene responsible for the disease is called HFE and is located on chromosome 6. It is mutated in most individuals with hereditary hemochromatosis. HFE interacts with the transferrin receptor and causes a clear decrease in the affinity with which the receptor binds transferrin. This interaction also may modulate cellular iron uptake and decrease ferritin levels. When a mutant or nonfunctional variant of gene is present, ferritin levels are not under influence of a normal and functional HFE gene, which leads to enhanced accumulation of iron in peripheral tissues.

Findings suggestive of increased iron transport at the basolateral membrane of enterocytes in hemochromatosis have emerged from numerous studies of HFE -related hemochromatosis in humans3 and in mice.

Hepcidin, a human antimicrobial peptide synthesized in the liver,4 plays a key role in the down-regulation of iron release by enterocytes and macrophages. The absence of this new peptide is associated with severe early-onset iron-loading phenotype. It is also inappropriately low in adult-onset HFE -related disease.5
Excess iron is hazardous because it produces free radical formation. The presence of free iron in biological systems can lead to the rapid formation of damaging reactive oxygen metabolites, such as the hydroxyl radical and the superoxide radical. These can produce DNA cleavage, impaired protein synthesis, and impairment of cell integrity and cell proliferation, leading to cell injury and fibrosis.6

I still think we should all be tested for hemochromatosis genetic mutations, because they obviously don't know how the HFE entirely influence of iron metabolism... I suspect that many of these anemias are actually iron loading anemias, and I doubt that we know all of the proteins that handle iron metabolism.

I keep reading that the C282Y is a more damaging mutation... higher in the Irish, and is associated with a threefold increase in developing MS... I go for the phlebotomy in about an hour, and will report back!

[Merlyn]

http://emedicine.medscape.com/article/177216-overview


■Reversibility with iron removal has been reported even with development of varices, but this is more likely early in the course of liver disease.
■All patients with cirrhosis should undergo diagnostic endoscopy to document the presence of varices and to determine their risk of variceal hemorrhage. Patients at risk for variceal hemorrhage should be considered for primary prophylaxis with propranolol or nadolol.

I quoted the same article today... varcies are twisted veins, and perhaps the development of these are related to the liver! Once the liver starts to get overloaded with iron, it goes elsewhere, either that or the iron never gets deposited in the liver in the first place, but varcies develop due to high iron in the blood, or high transferrin saturation... but these twisted veins are associated with hemochromatosis I believe... in the same way that this genetic mutation is associated with iron deposits in the legs.

[ErikaSlovakia]

Erika-I am not questioning your Dr. really... okay, maybe I am a bit. If ferritin is too low, and iron in the blood is pretty high, I would not consider that particularly great/normal... what I am starting to wonder is whether these doctors look at the gestalt of the iron panels... it seems to me that things should be in balance. That iron in the blood should not be high especially in relationship to low ferritin... are you officially anemic? That is pretty low ferritin, if you are not anemic you are pretty close. It is amazing how many people say they are anemic, or have pernicious anemia... I really think we need a very large MS population tested for iron abnormalities. Do you take any kind of iron supplementation? Thanks for any answers!

Hi,
iron should be between 10 to 28. Mine is 29,8 - which still means nothing.
Ferritin should be between 20 and 230 if I remember well. Mine is 10,4 so again it is very little to worry about.
No, I do not take any iron supplementation.
They will check my iron in 6 months again. So I simply do nothing about it. No, I am not officially anemic.
Erika

[Bethr]

Hi Erika, I am confused by the commer in the numbers, so I can't really comment.
We must remember that the ranges given as "normal" are just the range of the general population, not what is necessarily healthy for you personally.
People who actually do overload iron, genetically or otherwise, are kept with ferritin under 50 by phlebotomy, some even think closer to 10-20 is safe for them.

I would like to see my ferritin kept low (under 50), to feel safe, and hopefully my Tsat will follow downward, it seems to correlate somwhat.
I know what iron has done to me, and I believe high levels prompted my first Lesion. Luckily I'd had a detailed blood test in the weeks prior to the event.

All the best with your phleb Merlyn.

[ErikaSlovakia]

Well, I can not do anything. My doctor says it is OK, so it is end of story.
I really would like to check iron deposits in my brain but so far nobody was able to install SPIN software so I just can sit and do nothing anyway.
Erika

[ForeverSpring]

I saw the doctor this morning to review the lab results, and he ordered a phlebotomy, which was also done this morning (500 ml). I do not feel any different, either for better or for worse. I would not even know that I had that done if I did not see it with my own eyes!

He said that he has a few hemochromatosis patients. We discussed the fact that, even though we have no conclusive “proof” that I have HH, there is also no conclusive “proof” that I do not have it. In the end, he agreed to treat me with phlebotomy, because there is no harm done and it might be beneficial.

His goal is to get the ferritin below 50, as he would do with his HH patients. He wants me to return in 3 weeks to have blood drawn for a CBC panel and ferritin test. (We also discussed the fact that even ferritin levels are not conclusive!)

He probably thinks that I am strange, but he is quite affable about it!

ForeverSpring

[Bethr]

How nice to have a doctor that, at least, can see no harm being done. If phlebs are all that is necessary, so long as our iron is kept at a reasonable level and not allowed down too far, we should be healthier. I just felt tired on the morning after, but no daytime sleeping from that point on. Various aches and pains moving to different parts of the body in the three days following, great energy.

Keep us updated.....It's really interesting.

I just started menstruating, so I'm feeling really well and the heart pain has gone now (this is so weird!). I am definitely a bit sleepier in the past week, I need another phleb for sure.

[ForeverSpring]

Yesterday and today I have been experiencing the shortness of breath that comes occasionally. While I was talking with the doctor, the more I spoke, the worse the shortness of breath became, and I had to keep “catching my breath.” I told him that I was feeling “off” today, and just kept talking. (Hey, I had the phlebotomy on my mind! )

After he suggested doing the phlebotomy today, he had me sit on the exam table and then lie down. My breathing immediately improved! I was so surprised that I even said to him, “Oh, I feel better lying down! That’s odd!”

He listened to my heart and lungs, and then tapped all over my abdomen. All the while, I was puzzling over the change in breathing, and the term “ascites” came to mind. Now I am wondering about it. Whenever I get this shortness of breath, it is always accompanied by distension and discomfort in the abdomen. I feel bloated and stuffed.

He did not say anything about it, and I did not want to distract him from the phlebotomy topic, so I also said nothing about it. Maybe the next time I see him.

ForeverSpring

[ForeverSpring]

How nice to have a doctor that, at least, can see no harm being done. If phlebs are all that is necessary, so long as our iron is kept at a reasonable level and not allowed down too far, we should be healthier. I just felt tired on the morning after, but no daytime sleeping from that point on. Various aches and pains moving to different parts of the body in the three days following, great energy.

Keep us updated.....It's really interesting.

I just started menstruating, so I'm feeling really well and the heart pain has gone now (this is so weird!). I am definitely a bit sleepier in the past week, I need another phleb for sure.

It will be interesting to note anything that happens over the next few days. I was surprised to not feel weak or tired after the blood draw. The doctor and the nurse both were very concerned that I was going to drive myself home. I will keep you posted.

It is strange that you have pains moving about like that, but nice that they go away. Do you have another phlebotomy scheduled?

ForeverSpring