Hemochromatosis and Autoimmune Conditions

[Voyageur]

I donated blood for the first time today. Didn't quite go as planned. :( The nurse aborted part way through after seeing I was in a great deal of pain. For whatever reason the needle position was excruciating. Not deterred though, I booked the next appointment for February where I'll be using my other arm!: In the UK for men, they stick to no more than 4 times a year. I was pleased to see from one of the tests that my iron levels were normal. - It was a quick drop of blood into copper sulphate. I think they provide some more detailed information in due course after further testing.

Fwiw, both times for me the nurse had me do repetitive tests to determine which arm (vein) was appropriate; they spent a good amount of time on this and actually picked the arm opposite to what i was thinking.

Sorry this did not go well, Pob. February will see it right. :)

 

[Voyageur]

Looking for another set of eyes on these results. A family member just had their iron level’s checked with both low's and high's, which their doctor puzzled with, yet offered no conclusion.

Test Result Normal Range

Ferritin 153ng/nL 22----------291

Iron TIBC
UIBC 107ug/dL 110-------- 370 (low)
Transf % Saturation 64% 14----------- 57 (high)
TIBC 298 ug/dL 228------ 428
Iron 191ug/dL 50------ 212

Lipid
Total Cholesterol 202mg/dl
Triglycerides 101mg/dl <=199
HDL Cholesterol 78mg/dl >=45
LDL Cholesterol 104mg/dl

The only other test result that was noted out of the “normal” range was the following:

Vitamin B-12 376pg/ml >= 200

I looked up the possible why’s of this and it seems that Vit B-12 (cobalamin), being at elevated levels, can be associated with liver issues - and be that as it may, liver issues can be a sign of iron overload, from what i recall in past reading here.

Any thoughts on this would be appreciate – thank you.

 

[Rich]

Fwiw, both times for me the nurse had me do repetitive tests to determine which arm (vein) was appropriate; they spent a good amount of time on this and actually picked the arm opposite to what i was thinking.

Sorry this did not go well, Pob. February will see it right. :)

Thanks Voyageur, I hope so. I've been wondering if I tensed up a bit. I remember having flashbacks to the time when I studied medicine for a year. At that time we practiced taking blood off each other in pairs. My partner was rather clumsy, couldn't find the vein in my left arm and after digging around looking for it for what seemed like eternity had to abort and do the same to my right arm. I was unaware until yesterday that the experience had made me a little anxious when needles are in my elbows. :(

 

[nicklebleu]

Looking for another set of eyes on these results. A family member just had their iron level’s checked with both low's and high's, which their doctor puzzled with, yet offered no conclusion.

Test Result Normal Range

Ferritin 153ng/nL 22----------291

Iron TIBC
UIBC 107ug/dL 110-------- 370 (low)
Transf % Saturation 64% 14----------- 57 (high)
TIBC 298 ug/dL 228------ 428
Iron 191ug/dL 50------ 212

Lipid
Total Cholesterol 202mg/dl
Triglycerides 101mg/dl <=199
HDL Cholesterol 78mg/dl >=45
LDL Cholesterol 104mg/dl

The only other test result that was noted out of the “normal” range was the following:

Vitamin B-12 376pg/ml >= 200

I looked up the possible why’s of this and it seems that Vit B-12 (cobalamin), being at elevated levels, can be associated with liver issues - and be that as it may, liver issues can be a sign of iron overload, from what i recall in past reading here.

Any thoughts on this would be appreciate – thank you.

Looks like a moderate iron overload to me - ferritin levels could be lower, as well as iron saturation. So donating blood plus/ minus oral EDTA migt be beneficial. Although it is not a massive overload.

Not sure if vitamin B12 levels are significantly higher than they should be - and I think it is a bit of a stretch to diganose a liver problem from one pathology result.

Hope that helps,

 

[Voyageur]

Looks like a moderate iron overload to me - ferritin levels could be lower, as well as iron saturation. So donating blood plus/ minus oral EDTA migt be beneficial. Although it is not a massive overload.

Not sure if vitamin B12 levels are significantly higher than they should be - and I think it is a bit of a stretch to diganose a liver problem from one pathology result.

Hope that helps,

Indeed it does, appreciate your comment on both aspects.

 

[Alana]

Though my ferritin/saturation levels are normal, my husband's are close to 500/60 respectively!

I am very happy to report that after 5 phlebotomies at the hospital and one blood donation, the ferritin level is now at 88!

The good doctor (although at the beginning a bit reserved at handing out the prescriptions) suggested that my husband have one more before the end of the month, and then become a blood donor and decant about 4 times a year from now on. I think what helped him change his mind was all the info that my husband gave him regarding hemocromatosis, and how better he felt physically and emotionally (elevated energy levels and better mood) after the treatments started. So if your doctor is being close-minded about handing prescriptions for phlebotomy to any of you, do insist and provide the necessary info. If that doesn't work, change your doctor. There will be one out there who is willing to learn more about a condition he doesn't know much about, AND, that knowledge might help him/her see the condition in future patients, and treat it effectively before it's too late.

 

[Gaby]

Though my ferritin/saturation levels are normal, my husband's are close to 500/60 respectively!

I am very happy to report that after 5 phlebotomies at the hospital and one blood donation, the ferritin level is now at 88!

That is great news! :)

 

[Laura]

I am very happy to report that after 5 phlebotomies at the hospital and one blood donation, the ferritin level is now at 88!

The good doctor (although at the beginning a bit reserved at handing out the prescriptions) suggested that my husband have one more before the end of the month, and then become a blood donor and decant about 4 times a year from now on. I think what helped him change his mind was all the info that my husband gave him regarding hemocromatosis, and how better he felt physically and emotionally (elevated energy levels and better mood) after the treatments started. So if your doctor is being close-minded about handing prescriptions for phlebotomy to any of you, do insist and provide the necessary info. If that doesn't work, change your doctor. There will be one out there who is willing to learn more about a condition he doesn't know much about, AND, that knowledge might help him/her see the condition in future patients, and treat it effectively before it's too late.

I'm very, very glad to hear this. I think that any other little problems he may have been having will also clear up over the next six months or so. And it is great to hear that his energy levels and mood have improved. That's definitely been the experience we've had here.

 

[SeekinTruth]

Though my ferritin/saturation levels are normal, my husband's are close to 500/60 respectively!

I am very happy to report that after 5 phlebotomies at the hospital and one blood donation, the ferritin level is now at 88!

That is great news! :)

Ditto! His ferritin came down about 400, really amazing.

 

[Voyageur]

Though my ferritin/saturation levels are normal, my husband's are close to 500/60 respectively!

I am very happy to report that after 5 phlebotomies at the hospital and one blood donation, the ferritin level is now at 88!

The good doctor (although at the beginning a bit reserved at handing out the prescriptions) suggested that my husband have one more before the end of the month, and then become a blood donor and decant about 4 times a year from now on. I think what helped him change his mind was all the info that my husband gave him regarding hemocromatosis, and how better he felt physically and emotionally (elevated energy levels and better mood) after the treatments started. So if your doctor is being close-minded about handing prescriptions for phlebotomy to any of you, do insist and provide the necessary info. If that doesn't work, change your doctor. There will be one out there who is willing to learn more about a condition he doesn't know much about, AND, that knowledge might help him/her see the condition in future patients, and treat it effectively before it's too late.

Wow, great result and news - so happy for you both!

 

[Olesya]

My apologies for posting the results of my test this late. It maybe, I've misread the results of the iron testing I did in the spring. I did it twice, but the first time I forgot to do Ferritin serum test. And maybe I need to re-do it once again?

From blood panel:

Glucose, Serum - 103 mg/dL High
BUN/Creatinine Ratio - 24 High
LDL Cholesterol Calc - 107 mg/dL (0-99)

Iron Serum - 134 ug/dL (35-155)
Hemoglobin -15.0 g/dL (11.1-15.9)
Hematocrit - 44.0 % ( 34.0-46.6)

MCV - 95 fL (79-97)
MCH - 32.5 pg (26.6-33.0)

From Thyroid panel with TSH:

T3 Uptake 25 % (24-39)

From Iron and TIBC test:

TIBC - 334 ug/dL (250-450)
UIBC - 200 ug/dL (150-375)
Iron saturation - 40 % (15-55)
Ferritin, Serum - 31 ng/mL (13-150)

I counted Iron/TIBC ratio, using the the Ferritin, Serum result and the formula provided on this thread and it was 40,12.

I think, I should mention that when I did this test I was feeling really tired, and had difficulty breathing. I was taking magnesium and vitamin C in powder. After the test, when I got home, I had pain in the pit of my stomach and was really weak and tired and had sleep a lot. I've never had this reaction to a blood test before. I have really good veins and it's almost painless, and the technician in the lab only took three vials of blood that day. I did my testing in Labcorp lab.

I need to re-read this thread, and I need the advice do I re-test now? I don't have the same symptoms that I had when I did the test (difficulty breathing), but sometimes I feel weak and tired, need to sleep more (nap and hour or so during the day), but this maybe, because I lost weight, and maybe need more protein in my diet. I take only magnesium now and fish oil, waiting for some supplements I ordered from Mercola website.

 

[nicklebleu]

Hi Olesya,

This all looks pretty good to me - nothing that needs attention right now in my opinion. Ferritin is in a good range, don't let it drop any further, though, or your Hb might start to drop too. LDL is given as "a bit higher than normal" - also something you can forget about. BUN/ Creatinine ratio is very tricky, if you don't suffer from any known kidney disease and your creatinine is normal, I would forget about this too.

Hope that helps.

 

[Olesya]

Hi Olesya,

This all looks pretty good to me - nothing that needs attention right now in my opinion. Ferritin is in a good range, don't let it drop any further, though, or your Hb might start to drop too. LDL is given as "a bit higher than normal" - also something you can forget about. BUN/ Creatinine ratio is very tricky, if you don't suffer from any known kidney disease and your creatinine is normal, I would forget about this too.

Hope that helps.

Hi nicklebleu, can you please explain what you wrote in your post? Looks like I got it all wrong from reading this thread before. I did a search on"kidney disease" and I don't know if I have kidney disease or diabetes, looks like I might. I experience signs of anemia, fatigue and weakness, lost a too much weight in the last three weeks, I'm thirsty all of time (I have dry mouth). For the last week I have been experiencing leg cramps at night that are described in the two articles by Anthony Colpo http://anthonycolpo.com/why-low-carb-diets-are-terrible-for-athletes-part-1/ in this thread . Now, it looks to me that I was wrong going with the high fat diet and almost zero-carbs without having real understanding. So, it looks like by doing that I've depleted my glycogen stores and with low carbs that worsened my anger and moods became really erratic.

If you can, please explain it further. Thank you.

 

[mnmulchi]

This has been a great thread, I just finished reading through it and had my iron panel done also. I just received the results:

Ferritin, Serum004598 345 30-400 ng/mL Iron, Serum001339 164 40-155 ug/dL
Iron Bind.Cap.(TIBC)001347 310 250-450 ug/dL
UIBC001348 146 150-375 ug/dL
Iron Saturation011362 53 15-55 %

Evidently iron overload is not too uncommon! I have been cooking daily with cast iron for a little over a year and for the last few months I have been taking vit. C regularly. I have been on the KD for the last 6 months or so, with a very clean moderate protein, high fat, low carb diet previous to that. The main noticable symptom has been some fatigue. I am also of northern European ancestry, so I may have the genetic link. Right now I am just concerned with decanting quickly. I am scheduled for my blood donation in a couple of days and I have ordered EDTA and minerals/vitamins for chelating. It sounds like this process has worked very well for others here.

I want to thank everyone for all of the great information, this thread is yet another example of the power of networking. Since I can only give blood every 56 days I plan on proceeding with EDTA until my second donation and I will update my results after retesting my iron.

One interesting side note, I found out that my younger sister and mom both have been found to have low iron in the past few years and they both supplemented with iron to reach proper levels. I viewed my sisters values and her ferritin was 4 before bringing it up to 45. After seeing mine I have also urged my dad to have his iron checked as well, as he has never had a full iron panel done.

 

[mnmulchi]

I just had my first full blood donation on Saturday and it went well. I decanted a full pint and afterwards just had some slight swelling around the bottom of my bicep for awhile that was down by the next day.

I am going to begin my EDTA schedule tomorrow with a single 750mg tablet dose in the morning with ALA and then take my minerals/vitamins in the evening. I plan to continue this dosing daily based on how I feel until I am eligible to donate again (56 days).

I also finished The Iron Elephant today and thought it was very informative. One point that I am still wondering about that was mentioned multiple times throughout the book was the caution about vit. C supplementation. My multi-vitamin that I plan to take in the evenings with my EDTA protocol includes 250mg of vit. C. I will definitely not take the vitamins with a meal to prevent any extra absorbtion, though the book focused on how vit. C can make iron more mobile through the body (even stored iron it seems) and can also transport iron directly into the heart. Do you think it's enough of a concern to warrant holding off on the multi vitamin until I lower my iron some, just taking minerals in the meantime?