Appreciate your feedback I'm new to all this - Ferritin 255
Posted , 3 users are following.
Recently diagnosed with Primary Hemochromatosis, Ferritin 255, Iron Serum 149, Unsaturated IBC 144, Calc Total IBC 293 and the next row had 51 listed.
My age 51, went thru menopause within last year, been in pretty good fit physical shape, 5 9" height, weight 149lb.
My OBGYN Physical results returned Ferritin at 255 and asked me to see a medical internal medicine doctor.
Internal Medicine doctor ran a Hemochromatosis dna test which shows I have the Primary version. I also expressed pains in my stomach and joints being very sore. She scheduled me for a sonogram for my stomach. Sonogram identified 1 cluster cyst in my liver but she said the sonogram tech did not feel that it was necessary for biopsy. No visible damage seen in the sonogram on my organs.
My internal medicine doctor suggested I donate blood every 56 days and I would see her in 3 months. From the reading I've done, it doesn't seem possible that I will get my Ferritin number below 50 anytime soon. I would think she would of put me on a more aggressive schedule either every two weeks or monthly until the Ferritin number gets to 50 and then go on a maintenance schedule.
So, I did a full blood donation on 3/6 and on my own I went and did a second blood donation on 3/22. I would expect that probably only has me down to from Ferritin from 255 to 195. My joints do not feel any better. I only recently started feeling join pain in January 2020. I've always had yearly physicals and I'm happy it was caught early but this joint pain is the worst.
I appreciate your feedback. This is all so new to me and I don't feel that my doctor is putting me on an aggressive schedule to bring my Ferritin count down fast enough. My eating habbits are pretty good with an array of fish, chicken, fruits and veggies.
Thank you for taking the time to ready my post.
0 likes, 8 replies
sheryl37154 Angel4me
Posted
You don't say what your HFE genes are. They are important as different genes often give different outcomes. Your TS% is also important to know. The results of these could be why your dr has only ordered 56 day vx. Is your Hb in a healthy range?
Normally more frequent vx are ordered up front but without the information above, your dr's order cannot be disagreed with. It is also possible that inflammation from the cysts on your liver are contributing to your ferritin level.
Unfortunately, research has found the vx do not reduce joint pain, but it may stop it from getting worse. If it does for you, you are one of the lucky ones.
You need to educate yourself on this disorder by reading medical research, and contacting your country's hemochromatosis association. As a newbie, do not depend on information from blogs.
Angel4me sheryl37154
Posted
Sheryl,
I'll try to answer your question based on the info I have available.
Test Name: Hereditary Hemochroma . Result: Homozygous for the H63D Mutation. Date Tested 2/27.
TS%? What does this stand for?
Tested on 3/5: Abdominal Sonogram results: 20mm septated cyst along the tip of the liver there is a hypoecho 16mm lesion with internal echoes but probably increased through-transmission most likely a complex cyst.
I only found out about having this on 3/2 after being tested for this on 2/27. In the interim, done as much reading online as possible, went to Medical Internal medical doctor who identified I have this blood disorder, had one full blood draw on 3/6 and another one on 3/22.
As a newbie, I've ordered these books off Amazon to get up to speed:
So far only the Living Well book has come in. The joint pain is the absolute worst. I feel it strongly in my thumb, pointer and middle finger, neck, back and hip flexers. I did not feel any of this in December, 2019. Sad how drastically things can change.
I did some more research today and found that my city has a Texas Liver Institute Medical office. I'm going to get a second opinion on my path forward in getting my Ferritin numbers down and what a maintenance plan will look like.
sheryl37154 Angel4me
Posted
Homozygous H63D is a mild form of hemochromatosis. You will not need many vx, and certainly not frequent. It is a shame all your reading has not revealed that. Same with TS% - it stands for Transferrin Saturation %. It is an important marker for GH.
You level of ferritin is not very high as Jax says, and a lot no doubt caused by the inflammation caused by your cyst which is not necessarily caused by GH. Just have it treated like a person who does not have GH does. That is the way it works. Treatment of this cyst will probably bring your ferritin down. Arthritis, while it is known to be caused by GH, the inflammation of this is also a cause for higher ferritin. Treat the inflammation and your ferritin is likely to reduce.
You do not have to do anything drastic. Unfortunately, while joint pain can be caused by GH, vx does not reduce joint pain. Have it treated like a person without GH does.
It is frustrating, I know, having homozygous C282Y with a much higher ferritin, and 9 years delayed diagnosis until my hips broke up and other organ damage. My husband is homozygous H63D, had a ferritin level of 552 at age 55, and after he was de-ironed to 50, he never loaded again. Our son is compound heterozygous C282Y/H63D and is worse than his father but less than me.
I also have a hemochromatosis book published by the Iron Disorders Institute, but to me it is out of date now. The Hemochromatosis Cookbook written by a person connected to the Iron Disorders Inst is the best to read about food, and in which you will find the reasons why not to eliminate foods with iron (which is everything anyway), but it will put your mind at ease. I have not heard of "Dumping Iron" but I probably would not go for it anyway as vx is the only way to do it. As well, there are plenty of shonks out there who want to sell their products to gullible hemochromatosis patients, e.g. turmeric - do not even bother.
I am sure you will find it will all smooth out for you.
sheryl37154
Posted
BTW, the reference range limit for post-menopausal women is >300. It might have been your TS% which triggered the genetic test. >45% indicates GH.
jax15282 Angel4me
Posted
Listen to your doc.....
Angel4me jax15282
Posted
Have my appointment with Texas Liver Institute doc tomorrow.
To understand where I am after 2 blood draws in March, my results May 5th are:
Quest's summary state these are in the normal range. Ferritin really came down from 255.
I know this is not the extensive panel but I just wanted a temp gauge to see where I am now and of course to show my doctor tomorrow.
Since having the two blood draws I no longer feel heart flutters and pain in my finger joints is about 50% less painful. Joint pain in arms, shoulders, hips and legs is still there and the throbbing is the worst part. The pain I felt from the liver cyst under my right lower rib is no longer present. This might be due to stopping my female hormone therapy replacement. My internal medicine doctor recommended I stop it and see if it helps.
I'm hopeful to see what tomorrow brings. 😉
Angel4me
Posted
My visit to the Texas Liver Institute went well. My doctor confirmed H63D is one of the more mild ones.
My numbers and levels are great. Maintenance is to donate blood every 3 months. After 6 months have labs. Goal is to donate blood twice a year.
Regarding joint soreness, she had me stop the statin Crestor. I already feel 80% less sore.
January I will have a MRI of the liver cyst. Low grade but she wants better look.
Overall pleased and I'm glad i self referred myself to this specialist.
jax15282 Angel4me
Posted
i would strongly recommend against voluntarily donating blood again until
you have yout Ferritin retested. your numbers were not significantly higher
than the normal range.