Hemochromatosis and Autoimmune Conditions

[mcb]

Signed up with a Doctor a week ago, and got my blood test results today.

Seeking to make sense of it – confused by all the different units quoted here in this thread.

Serum Iron level (X76tH) 14 umol/L (14 – 28.0)
Serum ferritin level (XE24r) 98 ug/L (23.0 – 540.0)

No iron binding capacity or transferring saturation tested.

Not sure where this stands re recommended levels quoted earlier in this thread, compared with range specified as OK above. Do I need to donate blood, or take supplements, or am I OK?

Due to the cost of the recommended book, I have yet to order it.

That's why I ordered the tests myself before searching for a doctor. That way I don't have to argue over which tests to run. I am still looking for a doctor, by the way. My insurance plan doesn't seem to be able to keep track of which preferred providers are accepting new patients (the information they provide is wrong -- more often than not in my experience), which is slowing me down.

A doctor might object if patient orders blood tests beforehand, but if it is someone that actually understands hemochromatosis then that shouldn't be an issue.

Your ferritin is within the IOD "safe range" of 5-150 so I would guess that your transferrin saturation is not likely to be high, but I don't know that for a fact.

 

[l apprenti de forgeron]

Made it into get my blood workup done today and as suspected the form scribble was only for a singular Ferritin marker and not the full workup. The lab was good enough to call the Dr.'s office, copy my form and said she would get them to change the workup. On top of that she handed me a stool sample kit (it was never described or provided earlier) and said I would need to fast and we can do all the tests later. Asked about where i can give blood and she said it was by "appointment only" and 300 km away - oh lovely. May well have to learn to self decant.

I see. The price is about the same as what I paid from one of the Amazon booksellers. I hope this place wasn't taking orders thinking copies were available when they weren't!

Has anyone asked Iron Overload Disorders Association about how to obtain the book? If not, I may do that when I have a chance.

Well that now seems a big possibility for the delay. Would think they would send a notice or something - will write them back.

My credit card shows that the book purchase was processed today (even though I ordered it about 3 weeks ago), so hopefully that means it is now being shipped. :)

Exactly like me. I wrote them an email and they have responded. all orders were shipped Monday. They ran out of stock due to the tremendous demand.
I hope they have check well my case because my order should be brought to South America.

 

[Resistense]

For another data point here's my iron panel (27yo male, Irish/Welsh heritage):

Test Description Result Range Units Iron, Serum 74 40-155 ug/dL TIBC 217 250-450 ug/dL (low) UIBC 143 150-375 ug/dL (low) Trans. Saturation 34 15-55 % Test Description Result Range Units Ferritin, Serum 138 30-400 ng/mL

I was a bit hasty, and made a blood donation about 3 weeks before having this test done. Felt good after giving blood though. I'm not sure if the low TIBC/UIBC should be of concern? From the IOD website diagnosis page they mention the UIBC as their third test for diagnosing hemochromatosis. The value isn't particularly low (7 points out of range) but the TIBC seems quite low.. I imagine it's possible that after giving blood the binding sites are tied up carrying around more iron with new blood cell production going on? Or maybe even unloading from tissues..

My RDW (red cell distribution width) was very high at 17.5% (range 12.3-15.4%). This indicates a wide variation in the size of the RBCs. May be in need of B12, B6 or folate.. But I eat a lot of liver/other organs so that's a bit surprising. Not sure how concerned I should be about these out of range values.. I'm wont to explain them away in some fashion but this is likely wishful thinking. A little searching online seems to indicate these values are associated with some form of chronic condition, anemia of inflammation/chronic disease, or liver problems. Although other related lab values seem fine, MCV is borderline high at 93fL.. Likely need another workup in the future for comparison. Anyway just some more data FWIW.

 

[shijing]

There's an article by Mercola here which includes the video that had been posted by Ailén and Laura earlier in this thread but includes some additional text. He says that ferritin should fall between 20-80 ng/ml, with an ideal range being 40-60 ng/ml.

I've also tried to compile a list of data for all members who have posted their test results so far. Since there were some gaps and inconsistencies in the data, I haven't included transferrin or UIBC/TIBC, but I've included ferritin, iron, and saturation and organized it by ferritin levels. I hope I got everyone and that it's all accurate, but if anyone sees a mistake let me know:

Member ---------------- Heimdallr Timotheos (1) logos5x5 Bear Megan Mikel (1) voyageur Radagast Timotheos (2) Stoneboss (1) adam7117 fabric aleana 3D Student (2) Laura Kniall Oxajil Mikel (2) Approaching Infinity Shijing msante anart (1) 3D Student (1) Navigator Acid Yazz Regulattor Gawan (1) Galaxia2002 l apprenti de forgeron (1) SeekinTruth Zadius Sky (1) Foxx Resistense Finduilas l apprenti de forgeron (2) Gawan (2) Mac (1) Stoneboss (2) Mac (2) Bobo08 Aragorn drazen Odyssey Zadius Sky (2) Prodigal Son zlyja (1) Lisa Guliani Lindenlea LQB (1) Psyche herondancer anart (2) zlyja (2) Guardian LQB (2) Gandalf Seek10 lux12

Ferritin ---------------- 511 ~500 460 455 432 353 341 292.5 288 286.4 270 259 252 250 239.3 227 222 216 215 205 203 197 192 190.89 178 174.7 164 158 151 143 140 138.3 138 131 126 118 115 113.8 109 108 107.7 106.5 102 99 98 93 89 87 81 79 78 55 44 42 38 24

Iron ---------------- 47 75 63 107 102 122.9 105 134 66 48 78.2 100.56 75 85 105 63 116 107.3 124.58 102 112 106.4 111 74 155.86 118 101.68 56 61.45 133 60.3 37 176 78.2 77 99 78.2 101 61.45 70 64 55 130 122.9 52 90.5

Saturation ---------------- 25% ~60% 25% 25% 42% 39% 42% 33% 45% 27% 14% 32% 40% 28% 29% 46% 19% 65.4% 48% 34.59% 38% 34% 46% 51% 37% 19% 17% 20% 16% 53% 24% 31% 27% 20% 19% 15% 44% 35% 18%

UIBC ---------------- 140 224 188 145 158 173.2 216.2 162 177 287 150.8 196 125 196 145 54 201.2 181 143 232 296.09 217.9 195 158 240 216 212.3 240.23 270 307 165 223.5 240 229.05

TIBC ---------------- 187 299 251 252 260 296 321.2 296 243 335 251.4 271 230 259 261 156 307.6 292 217 288 357.54 278.2 232 334 317 315 290.5 301.68 334 362 295 346.4 292 318.44

 

[mcb]

...if anyone sees a mistake let me know...

Omission: my serum iron and ferritin (iron) saturation were 107 and 42%.

 

[shijing]

Omission: my serum iron and ferritin (iron) saturation were 107 and 42%.

Thanks Megan, I just added it.

 

[mcb]

...I was a bit hasty, and made a blood donation about 3 weeks before having this test done. Felt good after giving blood though. I'm not sure if the low TIBC/UIBC should be of concern? From the IOD website diagnosis page they mention the UIBC as their third test for diagnosing hemochromatosis. The value isn't particularly low (7 points out of range) but the TIBC seems quite low.. I imagine it's possible that after giving blood the binding sites are tied up carrying around more iron with new blood cell production going on? Or maybe even unloading from tissues...

I don't if/how much a donation that many weeks prior would affect the numbers, but I imagine it could have some effect, given the volume of blood involved. IOD talks about a "normalizing" effect so presumably drawing blood tends to bring the numbers closer to normal.

IOD recommends treating (decanting blood) to confirm diagnosis if you have a family history of HH or are symptomatic, and if ferritin, transferrin saturation, or UIBC is out of IOD safe range -- any of the three. To see if you are symptomatic, you will probably want to read the book.

 

[Resistense]

"...if anyone sees a mistake let me know..."

Scanned over the thread to try and look for some unit discrepancies in serum iron values. Converted the following from umol/L to the more commonly reported ug/dL:

Prodigal son: (14umol/L)/.179 =78.2ug/dL
Regulattor(not listed): 19.2/.179 = 107.3 (ferritin: 174.7)
Gawan: 22.3/.179 = 124.58
Finduilas: 27.9/.179= 155.86
Oxajil: 14/.179=78.2
Bobo: 11/.179=61.45
Lux12=16.2/.179=90.5

 

[shijing]

Thanks for the double-checking and the conversions, Resistense -- updated.

 

[nicklebleu]

For another data point here's my iron panel (27yo male, Irish/Welsh heritage):

Test Description Result Range Units Iron, Serum 74 40-155 ug/dL TIBC 217 250-450 ug/dL (low) UIBC 143 150-375 ug/dL (low) Trans. Saturation 34 15-55 % Test Description Result Range Units Ferritin, Serum 138 30-400 ng/mL

I was a bit hasty, and made a blood donation about 3 weeks before having this test done. Felt good after giving blood though. I'm not sure if the low TIBC/UIBC should be of concern? From the IOD website diagnosis page they mention the UIBC as their third test for diagnosing hemochromatosis. The value isn't particularly low (7 points out of range) but the TIBC seems quite low.. I imagine it's possible that after giving blood the binding sites are tied up carrying around more iron with new blood cell production going on? Or maybe even unloading from tissues..

My RDW (red cell distribution width) was very high at 17.5% (range 12.3-15.4%). This indicates a wide variation in the size of the RBCs. May be in need of B12, B6 or folate.. But I eat a lot of liver/other organs so that's a bit surprising. Not sure how concerned I should be about these out of range values.. I'm wont to explain them away in some fashion but this is likely wishful thinking. A little searching online seems to indicate these values are associated with some form of chronic condition, anemia of inflammation/chronic disease, or liver problems. Although other related lab values seem fine, MCV is borderline high at 93fL.. Likely need another workup in the future for comparison. Anyway just some more data FWIW.

If your hemoglobin is normal it is unlikely to be B vitamin complex deficiency. However this is easy to ascertain - just substitute B vitamins for a while and see what happens. Ferritin is still on the higher side and true, it could reflect an inflammatory process. Your wide distribution of red blood cells might just indicate increased RBC production after your recent blood donation.

Have you cleaned up your diet and fixed health problems and inflammation? If yes, I probably would probably do one or two more donations and then retest the iron panel.

Hope that helps.

 

[Resistense]

...
I don't if/how much a donation that many weeks prior would affect the numbers, but I imagine it could have some effect, given the volume of blood involved. IOD talks about a "normalizing" effect so presumably drawing blood tends to bring the numbers closer to normal.

IOD recommends treating (decanting blood) to confirm diagnosis if you have a family history of HH or are symptomatic, and if ferritin, transferrin saturation, or UIBC is out of IOD safe range -- any of the three. To see if you are symptomatic, you will probably want to read the book.

Yes I definitely need some more information to work with.. Looking back I saw Heimdallr and Anart had high ferritin low TIBC/UIBC as well. Muxel brought up hepcidin, a regulator of iron homeostasis, involved in anemia of inflammation and a signal for iron to be sequestered inside macrophages.. Quite a complex topic; I'll look into The Iron Elephant for more info. Thanks, Megan.

...

If your hemoglobin is normal it is unlikely to be B vitamin complex deficiency. However this is easy to ascertain - just substitute B vitamins for a while and see what happens. Ferritin is still on the higher side and true, it could reflect an inflammatory process. Your wide distribution of red blood cells might just indicate increased RBC production after your recent blood donation.

Have you cleaned up your diet and fixed health problems and inflammation? If yes, I probably would probably do one or two more donations and then retest the iron panel.

Hope that helps.

Hemoglobin was normal, 13.9 (12.6-17.7g/dL); was higher (above 16) when tested before donation by the Red Cross (I imagine their test is less accurate). Have some B-complex vitamins, and b-6 (P-5-P) in the cabinet--took a b-complex today. I thought the organ meats were adequate for these but I suppose a little vitamin supplementation couldn't hurt. Good point about the RDW, as the newly made RBCs start off larger and get smaller as they mature..

Diet is clean (except coffee), and in line with the recommendations on the forum (bone broth, high fat, limited protein portions). I don't exactly feel high energy though.. Inflammation is not too bad; DMSO+MgCl "oil" is a big help.

I'll make some more donations and get blood work at a later date. And yes, that was helpful and reassuring. Thanks also to you and Persej for info/research on EDTA and exercise as relates to ferritin levels, and everyone contributing on the thread. Very useful information.

 

[Stoneboss]

There's an article by Mercola here which includes the video that had been posted by Ailén and Laura earlier in this thread but includes some additional text. He says that ferritin should fall between 20-80 ng/ml, with an ideal range being 40-60 ng/ml.

I've also tried to compile a list of data for all members who have posted their test results so far. Since there were some gaps and inconsistencies in the data, I haven't included transferrin or UIBC/TIBC, but I've included ferritin, iron, and saturation and organized it by ferritin levels. I hope I got everyone and that it's all accurate, but if anyone sees a mistake let me know:

Member ------------------------- Heimdallr logos5x5 Megan aleana Laura Kniall Oxajil Shijing anart Navigator Regulattor Gawan Galaxia2002 Zadius Sky Foxx Resistense Finduilas Mac Bobo Odyssey Prodigal Son zlyja Lisa Guliani LQB (1) Psyche Guardian LQB (2) Seek10 lux12

Ferritin ------------------------- 511 460 432 252 239.3 227 222 205 197 190.89 174.7 164 158 140 138.3 138 131 115 108 102 98 93 89 81 79 42 38

Iron ------------------------- 47 75 107 66 48 78.2 75 105 116 107.3 124.58 102 111 74 155.86 61.45 37 78.2 77 99 101 55 130 52 90.5

Saturation ------------------------- 25% 25% 42% 27% 14% 32% 28% 46% 65.40% 38% 34% 46% 17% 16% 24% 31% 15% 44% 18%

I also reported my ferritin level back on April 11 at 286.4.

I got my blood test results today. My ferritin level is 286.4 (range is 40 - 300). I tried to tell him that I felt that even though I was in the "acceptable" range, that 286 was too high. Of course he shrugged it off saying that I had nothing to worry about and according to the rest of the test results, I am in excellent health. I did forget to mention to him that I had donated blood three weeks before the test, which could mean that my ferritin levels are probably above 300. I can give blood again in about 3 weeks time, but maybe I should first wait another 2 weeks or so and get another blood test to get a more accurate reading of my ferritin levels, (I'll have to see a different doctor, I'm going to try and contact a Hematologist tomorrow).

Just finished the first cycle of EDTA and will start the second next Thursday. Then I will go for a more complete blood test to see where I'm at. I also donated blood for the second time this past Tuesday. Hopefully my iron levels are going down...

 

[Gawan]

I got today some new blood results (not on an empty stomach), among many others (there were two different labs involved):

Iron: 18.2 (two labs stated the same) (last time about 23)
Transferrin: 1.94 g/l (two labs stated the same)
Ferritin saturation: 37.34%
Ferritin: 118.0 (last time: 164 and before giving 70ml of blood)

Anyway, what was strange was the conclusion of one lab result: High CD5 positive B-Cells which may mean there is a chronic inflammation or autoimmune reaction going on. Something similar also said the alternative health practitioner that my blood shows traces of inflammation. The doctor said the lab didn't show more results on it and she prescribed folic acid, cause it was low.

Actually I do feel like inflamed and the symptoms (pressure on eyes, brain fog, weakness) start after 1-2 hrs I ate something, also when symptoms showed up when I didn't eat something, so that was the reason I did rule out food inflammation. I did take off several times butter and eggs (for two - three weeks), but now I will do this test again to know for sure. The main reason is, the symptoms of pressure on eyes or dry eyes remind me of three years ago, before I took gluten off.

Any other ideas?

 

[Laura]

Gawan, send me your shipping addy in a PM and I'll send you a bottle of EDTA. I have a spare one.

 

[Z...]

Gawan are you wearing contact lenses?