This Is MS Multiple Sclerosis Community: Knowledge & Support

Just wondering if any of the people that had the MRV Doppler that showed narrowing of the veins ALSO had high Iron levels?

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35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos

Reytan
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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)

Hi, I have got results from my hematologist yesterday:
my iron went normal: 22,7 (it was higher than normal before)
Ferritin went also normal: 36,4 (it was only 10,4 before)
I was taking ferrum in pills for 5 weeks. The doctor told me just to eat more iron in my diet and to check my levels again in 3 months.
My transferin was OK before so we have not checked it now.
So I think my "iron situation" in my blood is more-less OK.

I have asked the doctor to check my vitamin D level. Result: 7,09 - it is too low. Normal should be 50-80 (my country says 20-32). Symptom of vitamin D deficiency is fatigue.
I have been taking 2000 mg/1333 IU per day for last 4 or 5 years - now I see it was not enough. I will have to go to see my GP after the Easter Holiday.
OK, so my vitamin D is low, my hormons in thyroid are low.
My vitamin B12 level is 409,90 - I think it is OK or am I wrong?
Erika

_________________
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse

some neurologists have increased D to 6000 IU's. Scientists here
what everybody at 70 at least. 65pc of population still under that
number, guess the message is not getting through.

Hi Merlyn -- While I really support the work you're doing on behalf on hemochromatosis, my bloodwork does *not* support hemochromatosis or even iron dysregulation, so I think you should remove it from your list. I posted my numbers to show results from iron-deficiency anemia, and even the director of the iron institute you are working with analyzed it as not having anything to do with hemochromatosis but as showing a typical iron-deficiency anemia from a longstanding vegetarian diet. Also gluten-free, by the way, with no processed, enriched food. And no cast-iron cookware.

I believe that hemochromatosis, mild or severe, has its place in the MS picture, possibly even as a differential diagnosis. I myself am passionate about celiac disease since I have several family members who have this, and I believe that many people who have been diagnosed with MS may in fact have celiac disease instead (or in addition). The misdiagnosis rate for MS hovers around 5 to 10 percent, and too many people do not get a really thorough workup. How many people get routinely tested for celiac disease as part of their MS diagnostic workup? How many people get tested for hemochromatosis?

But as far as my situation goes . . . I know that I personally do not have celiac disease. I follow the GF diet because of family members. And I am confident, after appropriate investigation, that I do not have iron dysregulation or iron-loading anemia. Just a very basic iron-deficiency anemia because I get very little in my diet.

So . . . please don't use me as an example. And your energy for your subject is great, but hemochromatosis is not the answer for everyone's MS. I completely understand because when I first learned about celiac fifteen years ago I thought gluten was the great source of all disease. The more I learn about nutrition and the human body, the more I learn that everything is a lot more complicated than it looks. Best wishes.

Bluesky 63-I was not really using you as a hemachromatosis person, just someone who had iron issues, but yes I will remove your name. In fact, I think I am going to be dropping out of this forum because I think the word is out there that there is probably a relationship for many people between "mild hemochromatosis" and MS. I have never said it is everyone's problem, simply that we can identify the iron loaders with a simple iron metabolism test. I also believe that people will have continuing problems if they do not address iron overload because there is no way for the body to get rid of the excess iron unless they do phlebotomy or some form of iron chelation. I do not have the same enthusiasm for CCSVI as do others on here, not just because it is not applicable to PP MS, but because I think they obfuscate when it comes to iron and MS and making it sound like is unique to this condition when it is not. It is involved in all of the neurodegenerative conditions, stenosis or no stenosis. But I have said all of this before, and I wish everyone the best.

20-32 ng/mL is same as 50-80 nmol/L
to convert ng/mL to nmol/L you have to multiply by 2.496


It is OK.
( Reference values can vary a bit between labs,
eg. synlab values are here
& conversion factors between convetional units, SI units click here )

Just found this ... "Some researchers propose that the current standard norms of vitamin B12 levels are too low[citation needed]. In Japan, the lowest acceptable level for vitamin B12 in blood has been raised from about 200 pg/ml (145 pM) to 550 pg/ml (400 pM)"
http://en.wikipedia.org/wiki/Vitamin_B1 ... #Diagnosis

Thank you tt1!
As it is very new to me, I am just trying to understand it.
So I just ask my GP to do something about my vitamin D levels. The hematologist told me to take some pills and spend little bit more time on sun.
Thank you again for your information!
I am just little bit cofused this page says 50ng/ml to 80ng/ml:
http://www.vitamindcouncil.org/health/d ... ient.shtml
Erika

_________________
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse