Ferritin Blood Test
Posted , 6 users are following.
Well here I am again! Having occupied space on Fibromyalgia, PMR and various other groups during my 3 year quest for answers, I'm now here and so hoping that someone can help or advise so I can pick up what's left of my life.
I've had so many consultations with so many doctors. Having had two cancers. I've found that there's never been any reluctance to try to help the enigma that is me.
I'm having daily headaches/migraine, pain in all my joints and muscles, especiallyhips, lower back, shoulders and arms, shins and calfs (everywhere 
I have been diagnosed with OA in my left knee and await an arthroscopy for multiple cysts - which are rupturing one by one - and patella misalignment, My daily activities are severely limited and I have constant fatigue. Among my many visits to various consultants, I've seen a specialist in cfs/fibro who 'didn't know' and suggested I avoid any weight bearing exercise as I am in such a lot of pain. He said I should 'rest' - much as Lazarus did before he was raised again.
I have a superb GP who is really going the extra mile. He rang me on Monday to tell me that he he'd been reading an article about Haemochromatosis and thought it fitted all my symptoms. I was really excited at the prospect of no longer being an enigma. I knew nothing about this condition (my internet medical training hasn't got this far yet). I was amazed when I did some research to find out just how many symptoms I have got - including red palms and others. I've lost a stone since beginning of March, partly because my appetite has been less. Oddly, I've really 'gone off' certain foods. Can't remember the last time I ate eggs or sardines whih I really like. I have osteoporosis so have 2 x Cal/vit D a day and magnesium.
Had Ferritin bloods done yesterday. Results today show 179 (lab range 13 - 200 for post menopausal women). Haven't spoken to do yet as he's not in. He's phoning me tomorrow. Wondering how to approach this. Is this Ferritin result conclusive? I have so many scans, blood tests etc over the last year or two - I don't know what else can be done.
Thank you
Maureen
2 likes, 21 replies
haircrazydaisy Mazzamo64
Posted
Well, you've certainly had a hard time of it! Great to hear that you have a decent GP, though. You really need to request gene tests before you can be certain of haemochromatosis- your doctor should suggest that as the next step.
Good luck with finding some answers.
sheryl37154 Mazzamo64
Posted
I am sorry to hear of your health hell. My dr took 9 years to diagnose my haemochromtosis. Your ferritin is not high enough to indicate haemochromatosis. However, another clue is your Transferrin Saturation %. What level is that? Unless it is >45% you are not likely to be given a genetic test - unless your dr wants to do it out of curiousity.
Your ferritin could be lowered if you are bleeding internally.
Have you had your Vit B12 and D checked? Not that they would be the cause of all your problems, but they would reduce your wellbeing if not ok.
I am sure you have investigated your diet and have eliminated problem causing foods. Eggs and sardines are super foods unless you are allergic to eggs, but you would definitely know that by now.
I avoid sugars and starches, have been Paleo long before it had a name, although not strictly so, as I still eat dairy. I worked out that I was not digesting them very well and caused me toxic like pain all over.
Have you got high protein in your albumin group type blood tests? If so, they could be worthwhile following through with. (Nothing to do with eating protein).
Not that I know that pituitary gland hormones cause all of your symptoms, but they are worth checking out in case something is going on there. After another 6 years o suffering, I was found to have a small tumour on my pit gland. Such a relief to have it treated by medication.
I hope you find answers real soon.
maureen99963 Mazzamo64
Posted
Hello, I have had fibromyalgia and I have Hemochromatosis (H63d). I also have Ehlers-Danlos ( which causes red palms in some). I don't have them but, I have joint damage (replaced a hip already) and continual tan, etc. My Ferritin was not exceedingly high (245) but, my Hematologist said it was 'robust' enough for phlebotomies and he always wants to keep my iron under 50. So, I get therapeutic phlebotomies ever 55 days or so. I donate blood so it is no longer disguarded. Fibro is just one chronic pain condition I have had over the past 25 years. I am 64 now and feel like I have learned about as much as I would have learned in medical school, too. Maybe they should give us chronic pain patients honorary degrees? Good luck-I believe God delights in revealing truth to us if we persists at knocking on the door.
ruth51315 maureen99963
Posted
Hi Maureen, I am homozygous H63D too. I am a little bit younger than you (60). My ferritin levels have been steadily rising over the past 10 months since they were first tested last September. My ferritin is now 277 with a 47% saturation. I have so many haemo symptoms but my GP refuses to consider me for phlebotomies as he says my ferritin isn't high enough to warrant it. He hasn't referred me to a haematologist. He did refer me to a liver specialist who told me I did not have HH because if I did my skin would be bronze. ( I have orange patches, but no overall bronzing.) When it transpired that I DID have haemo, the liver doc said that my problems were nothing to do with iron overload. (As you say, we patients seem to learn more about haemo than some of the medics supposedly treating us!.)
I wish that my GP was like yours and would refer me to a hematologist who would say that my ferritin level was robust enough to warrant phlebotomies. I have just about every symptom you can get with haemo and no-one is offering me any real help as they say my ferritin doesn't warrant it. I am in Norfolk. Pity treatment isn't the same all over the country.
I am glad that there are some enlightened doctors somewhere in England ( I am presuming here) and that you are receiving the phlebotomies you need.
I hope you don't mind if I quote your case when I next go to hassle the medics as I feel the only way I will ever feel better is if they take some of this toxic blood out of me. Just need to convince them that for me, my iron levels are too high!
sheryl37154 ruth51315
Posted
ruth51315 sheryl37154
Posted
Thanks for replying. I will definitely try and do this.
Take care.
maureen99963 ruth51315
Posted
Hi, I had to get my referral to the Hemotologist when my Primary Care Doc was on vacation. He and my nurse practioner tried to hide my iron panel results from me and I called and got the results from the front desk. I don't exactly know why they hid the results but, I think my doc was resisting sending me to the Hemotologist. Later, he and his nurse said they were glad 'they' caught the iron overload but, in reality they tried to mask the disease process from me. The sad thing was I had elevated liver enzymes (ALT and AST) for over 20 years. And, those enxymes resolved after just three phlebotomies! So, my liver was slowly getting detroyed because they didn't know that 1% of homozygouts do overload. My Hemotologist says they don't look at that; if you overload, you overload, to them. And they know very well how destructive iron can be to all the joints and organs. I do agree that you can go and donate blood. You may be like me and just have to get into a donating cycle and get tested by the Hemotologist every so often. I also avoid eating things with Heme iron and if I do I block it by taking calcium. Good luck, cuz!
ruth51315 maureen99963
Posted
Hi Maureen,
Thanks for replying. Most enlightening because I too, have raised ALT and AST. My GP referred me to the hepatolgy doc at the hospital who sent me for ultrasound on my liver and a Fibroscan. My liver is so badly scarred it is bordering on cirrhosis! (Fibroscan score of 10.7...it only goes up to about 12). The hep doc still said iron overload has nothing to do with my problem and referred me to a rheumatologist for the iron fist pain I have had for about 10 years. The hep doc said it was "just general arthritis". The rheumatologist is sending me for X rays to see if iron has affected my joints.
It's awful that your medics tried to hide your results from you . It seems like they don't want to find anything wrong with us, and even if they do, they are reluctant to treat us ( in my experience anyway.) I keep being referred to all these departments but nothing actually gets done to help.
Like you and Sheryl said, I will definitely be trying to donate blood but I am going to question my GP a bit more about why he hasn't referred me to a hematologist.
Heme iron...I have been almost vegan for 28 years. I don't eat eggs or cereal either so all the iron I do have, the body must have manufactured itself.
Deep joy eh, LOL.
You take care too,
hugs......
maureen99963 ruth51315
Posted
I wonder if you have iron in your water or hidden somewhere else? The body can't just manufacture or rid itself of iron. But, sometimes various people get is from somewhere else like in Africa, from barrels that store their drink. Get some phlebotomies and take good care of that liver!
ruth51315 maureen99963
Posted
Ah, funny should say that. Up until December 2014, we lived in the middle of nowhere and got our water from a borehole. We had to have it tested annually and the results always said it was a bit "iron y". I used to filter it but I suppose it still could have been iron y. I didn't filter the dogs' water and it used to leave brown crusty rings around their water bolws. (They were healthy....don't worry. Lived to ripe old ages, both of them.) So, looks like you could have hit the nail on the head. We are on mains water since we moved, so that's better.
I will endeavor to cosset my liver and treat it with kid gloves, LOL and try and find a vampire.
Take care,
hugs
haircrazydaisy ruth51315
Posted
Also, intake of iron isn't as simple as "if you eat meat you'll have iron, if you don't eat meat, you won't". Sheryl recommended The Hemochromatosis Cookbook to me a while ago and it explains how to reduce the absorption of iron in your diet. It tells you about the iron levels in vegetables as well as meat and the substances that will increase absorption of iron like sugar and alcohol. It also tells you the foods/drinks you should have with iron rich foods to minimise absorption like calcium products with meat and tannins, chocolate, apples, oregano, eggs etc... Iron in the diet is really much more complex than we could possibly first imagine! I watched a programme that airs here in the UK where a vegan lady was tested for HH because her iron levels were excessively high. It turned out that she didn't have haemochromatosis but she was eating lots of "non-heme" iron with foods rich in vitamin c (which helps iron to absorb). I changed my diet quite radically - I rarely eat meat but when I do, I have some kind of dairy with or immediately before/after. I eat lots of fish but, again, have a glass of milk or yoghurt for pud to try and cancel out the iron. I drink copious amounts of tea throughout the day - especially with a vegetarian meal. My iron levels are rising but much more slowly than previously.
Hope this helps xx
ruth51315 haircrazydaisy
Posted
Thanks for all the useful info. All this is still quite new to me, so any and all info is most gratefully received.
I have to say, I have learned far more from this forum than any medic I have been referred to so far.
So, thanks everyone.
Take care all,
xx
maureen99963 ruth51315
Posted
My iron increased exponentially during my preganancies (no menstruation) and when I was single and ate liver and onions a bit too often. I had scant periods so I couldn't keep up with all that iron. So, you have to take that into account. I also rarely eat clam chowder with all the iron. My father, who I inherited HH from also died in 1997
from the bacteria fiund in raw shellfish so we have to take the advise seriously to avoid that!
ruth51315 maureen99963
Posted
I have been more or less vegan for the past 28 years, apart from eating oily fish, cheese and having milk in tea. The last time I was anywhere near liver and onions, my mother in law served them to me, deliberately, knowing I didn't eat meat, just to be malicious.
The next time I visited, she gave me a salad. A HAM salad. I got the message, and stopped going with my partner when he went to see her.
Shell fish...I put a mussel in my mouth once, just to try it to please my partner, but I'm afraid I couldn't swallow it. So I'm safe from the evils of liver and shellfish. Safe from the evil mother in law too. She passed away.
maureen99963 ruth51315
Posted
Aw, sorry to hear about your trials. I have no sympathy from family about dietary issues either. They serve shellfish or pasta every time we go there and they know it isn't on our Paleo diet or Hemochromatosis diet. But my mom had it worse when her relations tried to make them eat meat every Friday. I asked her why she ate with them every Friday when she knew they would do that but, she didn't have any control over that in her youth. I don't eat liver any more but, I am sure I built up a tonof iron and had no efficient way to get rid of it until childbirth at age 33.
ruth51315 maureen99963
Posted
xx