Phlebotomy anyone?
Trent-I took 53 bottles of the stuff (it seemed to help when I was taking it, but whenever I stopped, it was back to same old same old. ACZ zeolite is cheaper... there are also some other products out there, but I don't know anything about them. Zeolite is supposed to absorb excess iron, but I have noticed absolutely nothing helping in that regard. Most health food stores probably have some form of liquid zeolite, I would just try the cheapest. So long as it doesn't have a bunch of other additives like cilantro or something.
A few of the results gathered together...
Reytan
________________________________________
It seems my iron readings are not normal either, are they?
Iron 27
TIBC 50
Saturation: 0.54 (!!!)
Ferritin 133
Transferrin 113
Time to make an appointment with hematologist and get some phlebotomies going, thank you Merlyn and everybody else for all the research!
Bluesky63-
iron 25 flagged as low
transferrin 367 flagged as high
% saturation TIBC) 5 flagged as low
ferritin 7 flagged as low
wbc 3.9 flagged as low
Sawdoggie
I was diagnosed with HH about 12 years ago and had an initial round of phlebotomy and am going through an additional round right now as my numbers have crept back up (I got a little behind on the maintanence). I found CCSVI through research I was doing looking for an iron connection to MS. I had my one and only MS attack last spring when coincidentally my ferritin count was up. The gastroentrologist that I see for the HH asked whether out loud if phlebotomy had ever been considered as a treatment of MS after reading the articles that I had sent to him (he has shown a lot of interest in this even though MS is not his specialty). My intial thoughts that I was tracking down on an iron and MS connection are as follows. These are general threads or ideas I was and am still looking into and are not meant to be "facts":
Bethr-
I got my results today. Positive for the H282Y heterozygous.
One gene only.
I am still slightly over the recommended iron saturation at 51% (was 62% 18 months ago). Ferritin is now within the range at 125.
I've felt great since I had my blood tests taken on Tuesday. No daytime sleeps at all!!!!! If taking 100mls of blood makes me feel that good, I've got to go for it, phlebotomy I mean. I also feel a lot better from the day I start menstruating, it lasts about 7-10 days and then the fatigue kicks back and builds up till the next menstruation. Making my body produce itself some new blood seems to be my key
Merlyn-
My ferritin level in December was 66, it was not tested this time:
Iron Level 20 (10-30) umol/L
Iron Binding Capacity 45 (45-75) umol/L
Saturation 0.44 (0.14-0.50)
According to the Iron Overload Disease organization, I am a hemochromatosis patient.
Forever Spring-
Upon reviewing my lab results, he suggested that the hemochromatosis gene test be done, also. I agreed. The results for that will take longer, I am sure.
The transferrin saturation rate is 60% (range 15-50%).
The iron is 187 (range 50-175).
This indicates iron overload, also called iron poisoning, which is a more apt term.
The ferritin is within range: 73 (range 26-388).
I have read that it is high with hemochromatosis?
I do have some Irish heritage.
Erika
I have my blood tests results in my hand. My doctor just made a little reading mistake.
My iron (Fe) in blood is 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
Katie
total iron 19 (9- 30)
TIBC....H 76 (45=70)
saturation .25 (.15-.55)
ferritin 41 (15-225 )
wbc low 3.9 (4 -11 )
shye-
Re: iron and chelation
I started EDTA IV chelation 3 weeks ago--
my NON_FASTING iron prior to chelation:
total 82 (40-160)
TIBC 244 L (250-450)
trans sat 34 (15-50)
Ferritin 103 (20-288)
after 2 chelations, and FASTING:
Total 138
TIBC 301
Trans Sat 46
Ferritin 79
Trent-
Serum iron tests
Serum iron level Out of range 55.9 umol/l (Normal 5.5 - 25.
Saturation iron binding capacity 61 umol/l (45 - 70)
Transferrin saturation index Out of range 91% (20 - 55)
Serum transferrin 2.45g/l (1.63 - 3.44)
My wife has an uncle who died from HH so our sons are having the checks too.
I had a further blood test before Christmas:
Serum iron was still out of range, but lower, at 32.7 umol/l
Saturation iron binding capacity 62 umol/l
Transferrin saturation index 53% (Top end)
Serum transferrin 2.48 g/l
Sunlounger-
TS 49.9 (20-50)
Iron 172 (55-160)
And on the complete blood count results
HCT 50 (42-52)
All the rest of the results where average inc blood counts and liver function test.
Transferrin 258 (200-400)
Iron binding capacity 304 (250 – 410)
Ferritin 57.91 (16-370)
Reytan
________________________________________
It seems my iron readings are not normal either, are they?
Iron 27
TIBC 50
Saturation: 0.54 (!!!)
Ferritin 133
Transferrin 113
Time to make an appointment with hematologist and get some phlebotomies going, thank you Merlyn and everybody else for all the research!
Bluesky63-
iron 25 flagged as low
transferrin 367 flagged as high
% saturation TIBC) 5 flagged as low
ferritin 7 flagged as low
wbc 3.9 flagged as low
Sawdoggie
I was diagnosed with HH about 12 years ago and had an initial round of phlebotomy and am going through an additional round right now as my numbers have crept back up (I got a little behind on the maintanence). I found CCSVI through research I was doing looking for an iron connection to MS. I had my one and only MS attack last spring when coincidentally my ferritin count was up. The gastroentrologist that I see for the HH asked whether out loud if phlebotomy had ever been considered as a treatment of MS after reading the articles that I had sent to him (he has shown a lot of interest in this even though MS is not his specialty). My intial thoughts that I was tracking down on an iron and MS connection are as follows. These are general threads or ideas I was and am still looking into and are not meant to be "facts":
Bethr-
I got my results today. Positive for the H282Y heterozygous.
One gene only.
I am still slightly over the recommended iron saturation at 51% (was 62% 18 months ago). Ferritin is now within the range at 125.
I've felt great since I had my blood tests taken on Tuesday. No daytime sleeps at all!!!!! If taking 100mls of blood makes me feel that good, I've got to go for it, phlebotomy I mean. I also feel a lot better from the day I start menstruating, it lasts about 7-10 days and then the fatigue kicks back and builds up till the next menstruation. Making my body produce itself some new blood seems to be my key
Merlyn-
My ferritin level in December was 66, it was not tested this time:
Iron Level 20 (10-30) umol/L
Iron Binding Capacity 45 (45-75) umol/L
Saturation 0.44 (0.14-0.50)
According to the Iron Overload Disease organization, I am a hemochromatosis patient.
Forever Spring-
Upon reviewing my lab results, he suggested that the hemochromatosis gene test be done, also. I agreed. The results for that will take longer, I am sure.
The transferrin saturation rate is 60% (range 15-50%).
The iron is 187 (range 50-175).
This indicates iron overload, also called iron poisoning, which is a more apt term.
The ferritin is within range: 73 (range 26-388).
I have read that it is high with hemochromatosis?
I do have some Irish heritage.
Erika
I have my blood tests results in my hand. My doctor just made a little reading mistake.
My iron (Fe) in blood is 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
Katie
total iron 19 (9- 30)
TIBC....H 76 (45=70)
saturation .25 (.15-.55)
ferritin 41 (15-225 )
wbc low 3.9 (4 -11 )
shye-
Re: iron and chelation
I started EDTA IV chelation 3 weeks ago--
my NON_FASTING iron prior to chelation:
total 82 (40-160)
TIBC 244 L (250-450)
trans sat 34 (15-50)
Ferritin 103 (20-288)
after 2 chelations, and FASTING:
Total 138
TIBC 301
Trans Sat 46
Ferritin 79
Trent-
Serum iron tests
Serum iron level Out of range 55.9 umol/l (Normal 5.5 - 25.
Saturation iron binding capacity 61 umol/l (45 - 70)
Transferrin saturation index Out of range 91% (20 - 55)
Serum transferrin 2.45g/l (1.63 - 3.44)
My wife has an uncle who died from HH so our sons are having the checks too.
I had a further blood test before Christmas:
Serum iron was still out of range, but lower, at 32.7 umol/l
Saturation iron binding capacity 62 umol/l
Transferrin saturation index 53% (Top end)
Serum transferrin 2.48 g/l
Sunlounger-
TS 49.9 (20-50)
Iron 172 (55-160)
And on the complete blood count results
HCT 50 (42-52)
All the rest of the results where average inc blood counts and liver function test.
Transferrin 258 (200-400)
Iron binding capacity 304 (250 – 410)
Ferritin 57.91 (16-370)
-
Vhoenecke
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- Posts: 332
- Joined: Sat Dec 12, 2009 3:00 pm
- Location: Rosetown, Canada
- Contact:
From Merlyn,
phoned the blood donor clinic in Victoria this morning, I am not sure that the Red Cross of Canada even accepts blood anymore because of the whole hepatitis C/hemophiliac debacle. Anyway, the clinic said that they do not accept blood from people with MS. So that route is out.
I may be off in left field but if the red cross won't take our blood(MS) or the Canadian Blood services. Can we have some blood taken and stored for us incase we have surgery or something? Weird but might work.
Val
phoned the blood donor clinic in Victoria this morning, I am not sure that the Red Cross of Canada even accepts blood anymore because of the whole hepatitis C/hemophiliac debacle. Anyway, the clinic said that they do not accept blood from people with MS. So that route is out.
I may be off in left field but if the red cross won't take our blood(MS) or the Canadian Blood services. Can we have some blood taken and stored for us incase we have surgery or something? Weird but might work.
Val
V, I have only so far had blood drawn for testing ( 6 vials 50 ml the largest) but I have a gut feeling I would only do 1/2 the normal 500ml draw at a time..at first maybe 150ml? I say this b/cause the 50ml test gave me such relief for a short time but it seemed like it allowed room for more to 'dump' into the bloodstream...I think our bodies are desperate to get rid of this poison...just a thought..
-
Vhoenecke
- Family Elder
- Posts: 332
- Joined: Sat Dec 12, 2009 3:00 pm
- Location: Rosetown, Canada
- Contact:
Good idea Katie,
My dad donated blood for years and received a 35 donation plaque. He had RRMS which changed to PPMS shortly after he was forced to stop donating blood. He began taking a cholesterol (sp) drug and they wouldn't take his blood anymore. Now, I look back and could correlate the quitting donating to the MS getting worse. I am no scientist but Hmmm!
My dad donated blood for years and received a 35 donation plaque. He had RRMS which changed to PPMS shortly after he was forced to stop donating blood. He began taking a cholesterol (sp) drug and they wouldn't take his blood anymore. Now, I look back and could correlate the quitting donating to the MS getting worse. I am no scientist but Hmmm!
I started a thread here for Klenner protocol: http://www.thisisms.com/ftopict-10343.html
Last edited by LR1234 on Mon Mar 22, 2010 10:04 am, edited 1 time in total.
Trent-
I ahve been helped greatly by the Klenner protocol--Dont' think I have hemachromatosis, but want to decrease my iron load anyway.
would be interesting if you could correlate this non-help with hemachromatosis. Maybe start a thread? Although probably best to keep it within this thread, since this is where the "action" is re: hemachromatosis.
I ahve been helped greatly by the Klenner protocol--Dont' think I have hemachromatosis, but want to decrease my iron load anyway.
would be interesting if you could correlate this non-help with hemachromatosis. Maybe start a thread? Although probably best to keep it within this thread, since this is where the "action" is re: hemachromatosis.
Val-I think you have to pay to store blood for surgeries, but I could be wrong. I'm not sure what the rules are, I haven't heard much about it anymore. Interesting about your father, the thing that really really worries me about this liberation procedure is what if you have both? What if you have CCSVI and an underlying metabolic problem of hemochromatosis. Iron accumulation is not a good thing. It sets you up for cancer, heart attacks, diabetes, early death... people have to know if they have more than one problem. I am astounded by the number of people that have iron metabolism issues. I think this is key, and if I were going in for this liberation procedure, I would also test for iron metabolism just make sure I don't have an underlying problem with that. I feel like I fell down the rabbit hole, who'd a thunk I would have hemochromatosis? And that I could treatment primary progressive MS with phlebotomy? And I sincerely doubt I am the only person with primary progressive MS to also have hemochromatosis! We need to know who can be treated this way.
Can somebody ask one of these doctors what to do if an iron metabolism panel shows hemochromatosis? Are they putting people on blood thinners because their blood is thick? Or is it a prophylactic measure to make the blood flow through the veins easier? And if they are putting people on blood thinners because the blood is thick, does anybody know why the blood is thick in the first place?