Hemochromatosis and Autoimmune Conditions

Galaxia2002 said:
I need some help with my results, please

Hemoglobin: 14,5
Heritrocite: 40,9
TIBC: 156 range (155 - 300)
% Iron saturation : 65,4 % (0 -20)
Serum Iron 102,0 (35 -140)

after two weeks they give me the other part of the analysis from the same sample ( I don't know why lasted so long):

ferritin : 158 ng/mL
transferrin 2,0 g/L range (2,0 - 4,0)

I am confused because in the results given the first week the % iron saturation is high, but using the formula given by oxajil

[(serum iron (µmol/l) : 25) / transferrin (g/l)] x 100% (Gambino, 1997)

when I put the values after transform it into the right units, I get 37 % of transferrin saturation. So I don't know who believe!. So "transferrin" seems to be a direct measure of transferrin, which I would think to be more exact, but I don't know.

But you would need to look at umol/l and g/l, are your results measured in these units? If not, you can't use those numbers in the formula, as you would need to convert them first to those units. I see that transferrin is in the right units, but I don't know about the serum iron one. I think you can rely better on the 65,4%. I only calculated it, because the lab people didn't calculate it for me. Another way to calculate this is by: (serum iron / TIBC) x 100 = (102 / 156) x 100 = 65.4 %, so this would be the correct one. Since your iron saturation is high and your ferritin is a bit higher than 150, I would think you may benefit from donating blood or using lactoferrin and EDTA.
 
Galaxia2002 said:
I need some help with my results, please

Hemoglobin: 14,5
Heritrocite: 40,9
TIBC: 156 range (155 - 300)
% Iron saturation : 65,4 % (0 -20)
Serum Iron 102,0 (35 -140)

after two weeks they give me the other part of the analysis from the same sample ( I don't know why lasted so long):

ferritin : 158 ng/mL
transferrin 2,0 g/L range (2,0 - 4,0)

I am confused because in the results given the first week the % iron saturation is high, but using the formula given by oxajil ...

I'm not sure about that either -- maybe it's the units. The calculation for you is simple, though: transferrin saturation is serum iron divided by TIBC (assuming that both measurements are given in the same units). For you that is

102/156 = 65.4%

That is way over the safe level, and your serum ferritin is high too. That is an indication of HH using the IOD criteria. As I mentioned earlier I like their straightforward approach. Some of the other organizations may have interesting information on their websites, but when it comes right down to it what you need to do is check TS and serum ferritin, and if they are high (as yours are) then you need to decant blood and see what happens.

The challenge now is to find a doctor that will prescribe what you need without dismissing HH for one reason or another, or ordering invasive and unnecessary tests while delaying action, or failing to take a sufficiently aggressive approach. It may not be difficult, but you need to be prepared -- have you finished the book?
 
IOD - Ironic Blood


I did a quick search and didn't find this material in this topic. I had to run this through OCR, so there are likely to be typos.

http://www.ironoverload.org/newsletters/barriers-pt.html said:
Ironic Blood

Editor Steve Barfield

Barriers to Diagnosis

Doctors who never intended to treat should stay ant of the way. Frequent checking transferrin saturation (TS) has a tendency to normalize this lab value. Doctors who check and refer on to another specialty are not only in the way but add delay in treatment. Or worse, this approach prevents treatment all together. This last doc in the daisy chain of testing will see a normal saturation and wonder what all the other doctors were concerned about. We know from the British Journal "Lancet" that some cases of hemochromatosis will present with a normal saturation. Once you are diagnosed it should be for hfe. After treatment begins you will never again qualify for a diagnosis as the process changes forever the iron panel on your lab report. The transferrin saturation lab value has several chances to go astray.
  • Transferrin saturation is a lab value that is easily skewed by other forces:
  • Frequent testing tends to normalize TS
  • Supplementing with over the counter vitamin C prior to testing
  • Time of testing - morning is more accurate dim afternoon
  • Donating blood prior to testing
  • Whether or not fasting was employed.
There can be false negatives or false positives in any lab test. Iron false positives are fairly benign due to safety factors birilt into the treatment protocol. However, the false negatives might mean that the hemochromatosis patient is going to be missed or neglected. Missing a diagnosis leads to failing health and an early death. Doctors need to consider symptoms, family history and at least one lab \'ahie out of range in order not to miss patients. Doctors know that femnn is termed acute phase reactive. This means that it can be temporarily elevated by a passing infection or inflammation. So when this is the only lab value out of range, they may discount this test. Would you ignore a smoke detector just because sometimes it has a false signal? Diabetes has always been a known symptom and type U diabetes begins at a ferritin level as low as 109. Yet most labs in the U.S. have a safe range from 5-150. There are some labs that allow an even greater levels as safe.


There has been a discussion among iron experts to lower the diagnostic threshold of transferrin saturation to 40%. It is at 45% in most American labs now. This will have the best opportunity to mclude more who would benefit from treatment. But before any of this can occur, all U.S. labs will need to be updated for iron. I have never heard of a lab that is current for this problem. It might be argued that this takes time. Though presently, there is no mechanism in place to accomplish this.

Hematology is a specialty that has gotten off track for diagnosing hemochromatosis. There are many hematologists who know how to diagnose and treat excess iron doing it well. Yet generally as a specialty, they have decided that ferritin is no: cut of range until it goes above 1,000. This is catastrophicalry bad information. What is the safe range for this measure of storage iron? From our perspective, a safe range for ferritin would be 4-45.



Though it will take the medicine awhile to catch up to this. There are brain symptoms that are indexed to a ferritin level above 50. Liver biopsy and genetic testing are to be avoided as archaic and deeply flawed. See our list of objections to both on this website under Table of Contents. If a doctor is suggesting either, check doctor's parking for a horse and buggy. If the American pubhc knew how much excess iron premauuely ages yon, there would be a far better awareness of this problem.


To see the proper method for diagnosis got to the "Diagnosis" page on this site under the "Table of Contents."
The minimum daily requirement for iron information has not been established


Copyright © 2010 by Iron Overload Diseases Assn: Lie. - ALL RIGHTS RESERVED
 
The above article brings out an interesting point. Drawing blood to check iron levels affects iron levels and can normalize them over time! It stands to reason that donating blood to self-treat could have a similar effect. So be careful, if you are seeking a diagnosis and prescription for phlebotomy -- in that case you might not want to donate blood and risk skewing future blood tests.

Another point worth repeating is to be sure to fast for 12 hours prior to the blood draw, which preferably should be done in the morning (as mentioned on the IOD website). If you order the test yourself they will probably not specify fasting but you need to do it anyway. If a doctor orders the tests and specifies less than 12 hours fasting (some might say as little as 3 hours), fast for 12 hours anyway.
 
Oxajil said:
Galaxia2002 said:
I need some help with my results, please

Hemoglobin: 14,5
Heritrocite: 40,9
TIBC: 156 range (155 - 300)
% Iron saturation : 65,4 % (0 -20)
Serum Iron 102,0 (35 -140)

after two weeks they give me the other part of the analysis from the same sample ( I don't know why lasted so long):

ferritin : 158 ng/mL
transferrin 2,0 g/L range (2,0 - 4,0)

I am confused because in the results given the first week the % iron saturation is high, but using the formula given by oxajil

[(serum iron (µmol/l) : 25) / transferrin (g/l)] x 100% (Gambino, 1997)

when I put the values after transform it into the right units, I get 37 % of transferrin saturation. So I don't know who believe!. So "transferrin" seems to be a direct measure of transferrin, which I would think to be more exact, but I don't know.

But you would need to look at umol/l and g/l, are your results measured in these units? If not, you can't use those numbers in the formula, as you would need to convert them first to those units. I see that transferrin is in the right units, but I don't know about the serum iron one. I think you can rely better on the 65,4%. I only calculated it, because the lab people didn't calculate it for me. Another way to calculate this is by: (serum iron / TIBC) x 100 = (102 / 156) x 100 = 65.4 %, so this would be the correct one. Since your iron saturation is high and your ferritin is a bit higher than 150, I would think you may benefit from donating blood or using lactoferrin and EDTA.

Hi Oxajil, I do transformed the units. 102 µg/dL is 18,3 µmol/l. I check the calculation again (I work with conversion factor in my job all the time) so I trust in the result. So (18,3 µmol/l :25 / 2 (g/l) x 100 = 37 %. Anyway it seems to be high according to IOD criteria that megan pointed. I can't buy the elephant book right now since I have problems with my credit card and the exchange control that we have in my country.

I wanted to ask Laura if you can describe the use of oral EDTA, I read that you use it in caps in a 3 day rounds and I have read what you post in the bloodline thread about the possible drawbacks. I have access to a sodium EDTA powder in the lab I work and I don't know if it is good idea to put into gelatin caps ( I can find some) or to try to do some liposomal form. I will try to locate a doctor and learn as the move here regarding blood donations.
 
Galaxia2002 said:
...Hi Oxajil, I do transformed the units. 102 µg/dL is 18,3 µmol/l. I check the calculation again (I work with conversion factor in my job all the time) so I trust in the result. So (18,3 µmol/l :25 / 2 (g/l) x 100 = 37 %. Anyway it seems to be high according to IOD criteria that megan pointed. I can't buy the elephant book right now since I have problems with my credit card and the exchange control that we have in my country.

It doesn't matter what units are employed as long as the same units appear in both the numerator and the denominator. TS is a ratio and a percentage -- the units effectively cancel when you divide.

Where the units do matter is in checking other thresholds that are not ratios, such as serum ferritin and UIBC. I don't see a UIBC in your results but your SF is in ng/mL, the same as mine. Unfortunately, the IOD 'Diagnosis' page fails to mention the units, but I am reasonably sure, based on my lab range, that they use ng/mL as well. In any case, the critical number at this stage is TS, and yours is quite high. SF (and yours is slightly high) seems to be more important for determining when treatment has removed the excess iron, although a consistently normal SF with high TS could indicate that something different is going on, including lab error.

G said:
I wanted to ask Laura if you can describe the use of oral EDTA, I read that you use it in caps in a 3 day rounds and I have read what you post in the bloodline thread about the possible drawbacks. I have access to a sodium EDTA powder in the lab I work and I don't know if it is good idea to put into gelatin caps ( I can find some) or to try to do some liposomal form. I will try to locate a doctor and learn as the move here regarding blood donations.

I would think that you might be better off seeking diagnosis & treatment. Chelation methods seem to be a fallback if you can't do that. If you start experimenting with other approaches while seeking a diagnosis at the same time, you may corrupt your future lab results.

Are you not able to order The Iron Elephant using the link appearing several times earlier in this topic? I could scan the book -- it would take me an hour or two -- although I would suggest checking with IOD first (ironoverload.org). I think you should certainly go through the materials on their website, especially the diagnosis pages and the past newsletters. Much of the value of the book, to me (apart from making me realize how important testing can be), is in understanding why HH often fails to be tested for or diagnosed properly, and how many doctors will not respond appropriately even when it is detected. You need this information for self defense, if you engage doctors or other professionals for diagnosis and treatment.
 
are you referring to this link Megan?

https://www.abebooks.com/servlet/SearchResults?sts=t&tn=Iron+Elephant%3A+What+You+Should+Know+about+the+Dangers+of+Excess+Body+Iron

It seems there is no more of the cheap ones! I have days reading almost all the links of this thread so I am not so lost, but if you can do that favor of made that book available, that would be of great help. I can buy another title but I wouldn't buy any book without recommendation because my funds are limited by the exchange control of my country and anything bought it in the USA arrives here at least in one month.
 
Galaxia2002 said:
are you referring to this link Megan?

https://www.abebooks.com/servlet/SearchResults?sts=t&tn=Iron+Elephant%3A+What+You+Should+Know+about+the+Dangers+of+Excess+Body+Iron

It seems there is no more of the cheap ones! I have days reading almost all the links of this thread so I am not so lost, but if you can do that favor of made that book available, that would be of great help. I can buy another title but I wouldn't buy any book without recommendation because my funds are limited by the exchange control of my country and anything bought it in the USA arrives here at least in one month.

Actually, it was this one:

http://www.bookch.com/details.taf?title=Iron%20Elephant%20%282nd%20Edition%29&book_id=658

Where the price is the same for every copy ordered...(I ordered the book from here).

fwiw.
 
Zadius Sky said:
Actually, it was this one:

http://www.bookch.com/details.taf?title=Iron%20Elephant%20%282nd%20Edition%29&book_id=658

Where the price is the same for every copy ordered...(I ordered the book from here).

fwiw.

Thank you Zadius! :)
 
Laura said:
So, it's looking like lactoferrin and EDTA are good iron un-loaders for those who have no other options.

That made my day! I have been almost panicked the last week because I am under the minimum weight for donating blood, and also have a ridiculous tendency to faint every time I see blood/needles :scared:, or even think too much about it. And weirdly several other members of my family share that. :huh:

I got my results back yesterday:
Serum Iron = 66
TIBC = 243
UIBC = 177
Iron Saturation = 27%
Serum Ferritin = 252

The doctor does not seem concerned (not a surprise) as most of my other lab results are good. I ditched my cast iron pans and started taking quercitin, circumen and ECGB (green tea extract) last week. I have taken EDTA on and off since I had my mercury fillings removed, but will start another course. It does seem to make me wake up with charlie horses during the night - even if taking potassium.

Also going to get some lactoferrin and see how this all works before testing again. One thing I did not know was that I should have been fasting and had the test done in the morning - it was done in the afternoon and I had eaten, so will remember that next time.
 
I read somewhere on one of the iron blogs (but cannot unfortunately find the site anymore) that liposomal EDTA may not be such a good idea after all. The author says that it needs to stay extracellular and that the liposomal formulation may get transported inside a cell where it is actually toxic.

I have decided to give up my project of liposomal EDTA and I am currently trying to source pharmaceutical grade EDTA to give iv a try – not something that I advocate doing without medical support on your own, mind you (I have mine in-house ...)!

I am still in the research phase on that and will report back once on my way.
 
aleana said:
...I got my results back yesterday:
Serum Iron = 66
TIBC = 243
UIBC = 177
Iron Saturation = 27%
Serum Ferritin = 252

The doctor does not seem concerned (not a surprise) as most of my other lab results are good. I ditched my cast iron pans and started taking quercitin, circumen and ECGB (green tea extract) last week. I have taken EDTA on and off since I had my mercury fillings removed, but will start another course. It does seem to make me wake up with charlie horses during the night - even if taking potassium.

Also going to get some lactoferrin and see how this all works before testing again. One thing I did not know was that I should have been fasting and had the test done in the morning - it was done in the afternoon and I had eaten, so will remember that next time.

From an HH perspective, these are reasonable numbers although a lower TS (below 27%) would be OK too. The serum ferritin is elevated as with others here, assuming a 12 hour fast before the test, and it would seem worthwhile to try to lower it. I believe you can retest for SF without encountering the 'normalizing' effect mentioned earlier, but if you wait a while before doing that then it may not matter anyway.

I am just flabbergasted by the way the medical establishment uses test results to look for "treatable disease" rather than to try to avoid the disease in the first place. This is true with HH, diabetes, and any number of other common measurables.

Elevated SF by itself is non-specific and calls for further investigation. If you have known inflammation/chronic inflammation issues then that is important to address and dealing with it can bring SF down. Reducing iron will help if your iron is high, but not if that is not actually a factor for you in why SF is high!

For any of you here that have not adopted a clean diet and who have elevated SF, you need to do that first since it is a primary path for dealing with inflammation and infection, along with eliminating environmental toxicity and doing detox.

If your ferritin is high, you may also want to avoid eating a lot of foods high in iron (such as liver), at least until you know more. If any form of untreated iron overload is involved, "healthy" eating may not be so healthy.
 
Aragorn said:
I'm going to have my iron levels tested next week. Since fasting is required (12 hours prior to the test), I'm wondering if smoking prior to the test could have any effect on the results? A search on the Internet gives mixed results.

I agree, that all these different markers to calculate your iron levels are confusing. Which are essential? My health care provider initially agreed to only test for serum iron (fS-Fe) and serum ferritin (S-Ferrit), but I've insisted that they should include TIBC and serum transferrin (StFr), but the doctor hasn't yet "ruled" on the matter.

I got an answer from the doctor, who said that they don't provide testing for TIBC and StFr, only serum iron fS-Fe and serum ferritin S-Ferrit. I'm not sure if measuring only those factors will tell anything useful. Maybe I should seek out a private lab of some sort, or try one of those self testing kits (was there any reliable ones?).

The doctor also recommended seeing a 'specialist' because of my symptoms, which have mainly been persistent muscle pain in the neck and upper back (ca 6 months going on), strange acne like prickles on the upper torso, and aching/popping thumb joints.

This iron overload - which I don't know if I have for sure - got me thinking, and I decide to try a series of coffee enemas since it should clean up the toxic from the liver. And, wouldn't you know, the next day after the first one the day before yesterday, my neck and back pain is completely gone! So, I guess there's some benefit from doing the enema. If it's iron or just other toxins that are my problem, I don't know - but it seems to help.
 
nicklebleu said:
I read somewhere on one of the iron blogs (but cannot unfortunately find the site anymore) that liposomal EDTA may not be such a good idea after all. The author says that it needs to stay extracellular and that the liposomal formulation may get transported inside a cell where it is actually toxic.

I have decided to give up my project of liposomal EDTA and I am currently trying to source pharmaceutical grade EDTA to give iv a try – not something that I advocate doing without medical support on your own, mind you (I have mine in-house ...)!

I am still in the research phase on that and will report back once on my way.

I can understand that it can be problematic to have something that should remain outside the cell end up inside the cell, but did the author of the blog specify why it was toxic? Also, is there any way you can try to relocate that link (searching your browsers history maybe)? I'm quite interested in reading it.
 
Aragorn said:
...I got an answer from the doctor, who said that they don't provide testing for TIBC and StFr, only serum iron fS-Fe and serum ferritin S-Ferrit. I'm not sure if measuring only those factors will tell anything useful. Maybe I should seek out a private lab of some sort, or try one of those self testing kits (was there any reliable ones?).
...

I can only tell you what I would do -- find another doctor or order the tests independently (taking into account the possible TS 'normalization' factor I mentioned above).

Have you read the book? (Sorry, I'm not keeping track of who has and hasn't.) Everyone really needs to do so before attempting to diagnose "doctor responses," and you will need TS in order to screen for HH.
 
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