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Dreamer27 06-19-2012 12:10 PM


This is my first post.While testing me for Lyme last summer, my doctor found my ferritin iron was 479. She immediately sent me to a hematologist , Two more tests were about the same. He then said you only have one trait for hemo, so you are a carrier, you don't have hemochromatosis. Most of my Irish relatives have it, or are carriers. My mother's cousin has blood removed often, runs about 2000, and has had her second heart attack. My heart doctor said it is important to get this lower. Hemo doc says just watch it until it hits 1000...What are we watching if I don't have it, because it's only one trait. And if I don't have it, why is my ferritin nearly 500? I had a sudden severe sickness and fever 3 years ago. Urine was color of cola. Extreme weakness. Finally went to ER on 4 th day. They said I had "amazingly high liver enzymes' Follow up with family doc not sure what was wrong. Very weak for 6 eweeks after, tender, enlarged liver, hurt when I would go in pool, from the water pressure.
Hemo doc only wants to test once a year. I also have MGUS IgG Lambda, severe RLS through whole body, extreme fatigue since my tick bite with bulls- eye in 1982,( docs nor I knew what it was at the time.) Chronic tendonitis,tendon ruptures , and breaks, carpal tunnel ,cervical fusion, synovitis, 6 kinds of migraines, including ocular daily, costochondritis, hot,swollen joints, recurrent iritis, skin rashes, sun sensitivity, severe fibromyalgia, tinnitus,vertigo, Meniere's Disease, narcolepsy,excess C-reactive protein at 5.7, severe neuropathy, since 1986, diabetic since 1999, MTHFR disorder, C677T/C677T homozygous, muscles spasms since 1990's, sometimes only able to release with ER visit for dilaudin, spasms daily now, mostly feet, neck, , arms and hands, (docs have no idea why), motor and sensory nerve damage, axonal nerve damage, legs very weak, won't work immediately after standing...sometimes give out unexpectedly, dropping me to floor...various docs suspected MS, tests always negative,( Niece just diagnosed with it.) Hemifacial spasms lasted 6 weeks...recycling every 30 seconds to few minutes. Suspected stroke. Life flighted to Cleveland , nothing detected. Had trouble swallowing and slurred speech for 6 weeks afterwards. Very easily fatigued , and unexplained weakness... All this started in 1983....I was healthy, strong, active, factory worker, raised horses, kids in band, 4-H and always busy...went straight downhill after tick bite. Even advanced tests show no Lyme disease. Many docs say I have Lupus or other auto immune. Tests always negative, but ANA always chronically elevated.....I am so frustrated after all these years...what is wrong with me? I still ride recumbent inside bike and outside 3 wheeler when I can...But even a normal days activity and house work exhaust me... I can't do it..

ladybud 06-24-2012 12:28 PM

Re: Hemochromatosis
First as far as the hemochromatosis, 479 is definietly high and with your Irish background and + FH, I would check into this further with another hematologist. You already have arthritis and diabetes, two of the diseases that can be caused by high iron deposits in joints and pancreas. With possible lupus as well, this could definitely add to the joint pain/problems. Are your current liver enzymes high? If so, that is a third area the iron likes to accumulate. Also, the thyroid gland, so you might want to check out your thyroid function since you are so tired. You should have a test on your blood work that says transferrin saturation. If it is over 40% it is high, over 50% definitely in the hemochromatosis category. With your previous stroke, you want to avoid having your blood get too "thick" with red cells, as some with hemoch. do. They will run a high hemoglobin/hematocrit-the opposite of anemia. Alcohol will increase iron absorption and many people take multivits with iron, which should be avoided in hemoch.(a multivit without iron is ok). The American Hemochromatosis Society has a good website on this condition and can help you get the right testing and treatment.

Dreamer27 06-25-2012 07:14 AM

Re: Hemochromatosis
Thanks SO much It's so good to hear from someone who understands hemo! Ok, so I go to the hemo doc on Thursday, all my tests results are there..EXCEPT the ferritin ! The lab forgot it! So, I had blood taken Friday morning, and they say I should have results today. He didn't mention liver enzymes. I have a copy of my blood work. Do you know what I should look for ? My thyroid tests have always been rock bottom in the normal range....One thing he said Thursday that disturbed me was, ' I hate to put a "label" on you by saying you have hemochromatosis"...??? Who cares about that? I already have so many "labels" what do I care... I replied, "I don't care about that, I just want to get a definite picture of exactly what is going on, and fix it, so I can feel better!" I then said I hear that they are now finding that people who only have one trait, and are called carriers, can also have hemo! He then said, Yes, I actually do have a few patients like that.... I feel he doesn't want to make a diagnosis , because my health is already so compromised...Makes no sense...if I do have it, I want to know exactly where I stand, and treat it. If I don't , why are my ferritin levels 459, 479 another similiar number in the past year?
I'm really frustrated...When the doc calls today, I want to have ready what to say to him....if he still is wishy washy, I need to see another hemo doc. I really think my neuropathy , and RLS are related to this iron level....and I have strong suspicions about my MGUS...the numbers are slowly rising...but he said it hasn't changed...??? They were all up since my test last summer...I just check the hemogobin and hematocrit 15.5 and 45.0 both just over normals, with an H beside them..C-reactive protein is 5.7 too high.globulin was 2.4 , now 3.1 although I don't know what that is. well, I will get back here after I hear from the doctor today

ladybud 06-25-2012 08:49 AM

Re: Hemochromatosis
For the liver enzymes look for ALT,AST, LDH,Bilirubin,GGT. They should all be grouped together. Anything with an H after it is high, and L is low. An ultrasound or CT scan of liver can show density indicative of excess iron. Your Hemoblobin and hematocrit are high, depending on where you live (relative to altitude). The treatment for hemo would correct that as well, reducing the "thickness" of the blood and lowering stroke risk.
I would look at your TSH in thyroid function test results. If your thyroid is underactive, a manifestation of hemo, TSH will be high. This is easily treated by thyroid supplement. An endocrine or your PCP could do that. Rx of the hemo may improve thyroid function which causes fatigue if it is low. Are you seeing a rheumatologist for the lupus? You might want to do that, as treatment for that will help you feel better too. Sounds like there is reluctance there to label you with lupus as well, but then usually you don't get treated!
The neuropathy and RLS are probably related to the autoimmune disease, and can be treated as well. Are you on anything for stroke prevention, with the MTHFR? I would also see if anti-phospholipid antibodies have been checked (related to lupus) which can increase blood clotting risk as well. I'm a strong believer in prevention!!

Dreamer27 06-26-2012 10:18 AM

Re: Hemochromatosis
I will look over my bloodwork for the tests you mentioned. My thyroid also is always right on the bottom of the normal values...I know I have low magnesium and potassium. Well, here's the latest. I called my doc yesterday. The nurse said my ferritin was 485 . She said they don't start treating it till it hits 1000. I said with my one liver incident already, I'm worried that there will be damage to organs while we're waiting for it to hit 1000. She got snippy and said, then drink wheatgrass juice...I said I wanted to know what gene mutation I had .She came back wiith c282...and some letter i can't remember..I don't know if there's a second one or not. Anyway, my husband said don't go back to that doc. He will only run ferritin , and not the other tests. So, my daughter works with someone who has HH. He referred me to his doc. He's an internist also, and specializes in Hemochromatosis. He is very happy with this doctor, and said his priority is to reduce any excess iron stored in the body...So, I have an appointment on July 18th! I might have been able to get in sooner, but we are going on our first vacation in 10 years, with all the kids and grandkids, so I don't want to miss it! As for the Lyme and Lupus... I have gone to countless doctors over 30 years now... Some say my numbers aren't high enough to diagnose an auto-immunne disease. Others say, oh you have lupus...or ankylosisng spondylitis..or any other one.. I was given plaquenal, celebrex, steroids as needed, pred-forte for eye inflammation....The Cleveland Clinic head of rheumatology said... the lab forgot one important marker test.. It appears you have some chronic auto immune disease. Here's a bag of sample pills. Take them and see which works best for you, then have your family doc prescribe them...But come back if your symptoms worsen... well, they were already bad enough to affect my life..sooo... I'm not sure if it's lupus , lyme or both.. although I definitely believe i have Lyme for sure, which is called chronic late lyme now, because I had the huge bulls eye rash. which me nor the docs knew what it was in Ohio in 1982... so i believe this new doctor will help me, and take preventative measures to stop any damage before it starts. I also have the MGUS to watch and those numbers all rose slightly. My joints hurt so bad at night, I don't even get relief by lying down. It's like having the flu every night. And the upper arm muscles are very painful by evening ..have had painful muscles for years, with fibro, but this is different. And the fatigue is used to be some bad days.. now it's more bad days than good. I can't keep up with regular housework...if I try. I'm down and out for a day or so after... I usually do a few things, and rest and repeat. my rheumatologist in Delaware was wonderful. He understood..some nights with the nueuropathy, muscle aches and fatigue, I just cry.. i can only take so much. When I was still working in the library, my boss would ask how i could be in such a good mood, with all my health problems.. I said why not? Im walking , and better off than a lot of people. But now it's getting harder. Well, it's a nice day, and not humid , for a change! I'm going to take my 2 chihuahas and Boston Terrior out in the back yard and relax! Hope you are doing well today !

TreeFrog 07-23-2012 07:34 AM

Re: Hemochromatosis
Hi Dreamer,

I hope you got your vacation! I see your doctor appt. is still pending.

I am so glad that you posted about hemochromatosis! SO, the doctor thinks he should wait for further damage to occur before treating hemochromatosis. If we have it, it must be treated! I suppose that doctor would also want patients on an organ damaging drug rather than to give blood.

Good for you that you are moving right along to another doctor! I'm so tired of having to diagnose myself, educate doctors and ask them to humor me in order to get proper testing and treatment.

I might not, but believe I do have hemochromatosis. It is pretty common in menopausal women and we who have had one told us that complication!

Do you have any skin discoloration around your calves or ankles or feet? My skin there has bronze patches that look like filthy skin. A doc told me that this could be from other reasons than hemochromatosis, but in my research all of the 'reasons' easily can be directly related to having hemochromatosis! such as diabetes, low thyroid, vascular problems, liver disease, fatigue, cramps, digestive disorders, all of which I have....oh the list is too long for me to remember! Why the heck not treat the source!???

I have ordered online tests for hemochromatosis. Granted it may not be something I have, but I need it ruled out, if that is the case. Thanks again for discussing this subject. I am eager to learn what the new doctor says and if you get treatment how it makes a difference.

panda2526 11-17-2012 05:08 PM

Re: Hemochromatosis
Hi there, and am new to this board and site...I came across it in my search for answers on a recent diagnosis my husband got of HHC, hereditary hemochromatosis. Big word...big problems.

I read through some of the posts from dreamer, and I have to say that, what you drs are telling you is scaring ME! Your ferritin levels are already TOO high...and you should begin getting treatment right away. 1000 ferritin is when organ damage happens, and you are already experiencing such serious symptoms they need to not let you load so much more before taking it out. It's a lot harder to regulate once it's in there than get it down, which by the way, in maintenance ferritin should only be between 20 and 75, so it's CRAZY they are getting this whole situation confused for you.

The dr that is telling you you don't have HHC is have a gene confirmation, right? C282Y...and any other one? My husband is Irish, and is C282Y and H63D...his ferritin was 863 and 71% TSAT...he has had 4 phlebotomy's now and his iron is coming down, but I say and agree with others, you need to get a doc that knows his stuff about this, which is hard to do, but in loo of that, do as much research as you can...iron disorders institute is an excellent resource, can give you the best info as they study iron disorders and the effects. I know that treatment is usually initiated at anything over 200 for women and 300 for it is ludicrous for you to have to wait until organ damage, especially liver, as you can then begin the fibrosis and cirrhosis stages of liver damage. The fact that your liver enzymes are elevated show liver injury already, and this needs to be stopped by getting the iron OUT!

I know you were posting a whole back...perhaps you have gotten somewhere by now, I am curious as to your progress. THanks, hope you are getting well-er by husband has peri-portal fibrosis stage 2 with inflammation. His joints are damaged and has pancreatic nodules and gallbladder disease. THis is a serious disease left UNTREATED...

Smeetoo 02-17-2013 08:18 PM

Re: Hemochromatosis
I was just diagnosed in Sept. with a level of 1430 and 57% sat. I had an ultrasound done that showed a fatty liver and a biopsy showed no cirrhosis, but I do have NASH. I've had about 10 -11 phlebotomies so far and continue to have them once a week my Hematologist wants to see me back in April and I will see my GI on Wed.

I have not had red meat since I was diagnosed. I have not had a drink since Aug. and have stopped eating cold cereal except for shredded wheat. Almost all of the cereals are fortified with iron (actual iron shavings). This change in diet has caused me to lose 20lbs. and I plan on losing another 60.

Dairy, veggies, and tea are very good for you and for having a low iron diet. Avoid sugar, vitamin C, alcohol and raw seafood especially shellfish.

Smeetoo 02-17-2013 08:24 PM

Re: Hemochromatosis
I was just diagnosed in Sept. with a level of 1430 and 57% sat. I had an ultrasound done that showed a fatty liver and a biopsy showed no cirrhosis, but I do have NASH. I've had about 10 -11 phlebotomies so far and continue to have them once a week my Hematologist wants to see me back in April and I will see my GI on Wed.

I have not had red meat since I was diagnosed. I have not had a drink since Aug. and have stopped eating cold cereal except for shredded wheat. Almost all of the cereals are fortified with iron (actual iron shavings). This change in diet has caused me to lose 20lbs. and I plan on losing another 60.

Dairy, veggies, and tea are very good for you and for having a low iron diet. Avoid sugar, vitamin C, alcohol and raw seafood especially shellfish.

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