Could I have hemochromatosis ?
Posted , 5 users are following.
Hello,
I am 39 yrs old, healthy, active mom of 5. I am a nurse and enjoy reading and photography. My youngest boy was conceived in March 2015, I have been exclusively breastfeeding since. With that said no period for 20 mths. I started suffering from sciatica and left joint pain, specifically my SI joint causing my pelvis to be out of alignment. After multiple adjustments I went back to the Dr who insisted it was a bulging disc and I had an MRI. It was negative. I self referred to a Physiotherapist and was having my hubby tape me and wearing an SI joint belt. I went to the DR again asking for blood work as I thought perhaps since I wasn't taking a multivitamin and breastfeeding, perhaps the joint pain was from a vitamin deficiency. Lab results came back with Ferritin 805 iron 26 Alt Phosphate 167 Billirubin 20 WBC all low blood in urine, ketones and protein. Saturation 50%
Dr insists its Vit B12 deficiency- that came back fine
ultrasound or liver fine
X-ray of the heart fine
tested for hemochromatosis waiting for results
Dr now days he thinks it is malnutrition
thoughts???
I am considered as my dr doesn't like being given suggestions and now says ferritin levels are just a sign of liver inflammation, but my ultrasound was fine?? I'm so confused and wondering if I should ask to see an internist. I can't see how this could be malnutrition I eat like crazy!
1 like, 5 replies
Golak jennifer_17312
Posted
Jennifer,
I can understand how unsure and frustrated you are right now.
Usually inflammation, doesn't yield to such high numbers in your ferritin levels. Do you have any family history of liver disease or hemochromatosis?
Considering that you are still young and have had 5 pregnancies so far, it is possible that you do have hemochromatosis, but all the blood loss you have had up to now has hindered the deposition of iron in your liver, hence a normal liver ultrasound.
I recommend :
Measuring your transferrin saturation (you have to ask your Dr. )
And also following up with another ferritin level in 2-3 months.
Unfortunately your joint pain and ferritin levels are pointing towards hemochromatosis. I hope that is no the case, but better be safe than sorry.
Best of luck to you.
jennifer_17312 Golak
Posted
My iron saturation was 50%
The pathologist said to consider anemia of chronic disease, which hemochromatosis could be why.
I'm hoping to have the results on a week. I don't have it or lover disease in my family that I am aware. If hemochromatosis comes back negative I have no idea what to look at next, so many possibilities. Sadly how things have gone with my Dr I don't have the most confidence in him anymore.
Golak jennifer_17312
Posted
Jennifer,
Hemochromatosis is just a name for an iron overload disorder. Even if they don't detect any positive genes on your DNA test, I strongly recommend you following up on 3 monthly ferritin level check to see the pattern. If your ferritin level starts declining, your Chances of having iron overload decreases which would be great. However, if the ferritin levels keep increasing, you will have to get rid of the excess iron in your body, because no matter what the cause, above a certain level, the iron starts depositing in the organs and then one will suffer the consequences of a high iron level.
Please don't take my post as being negative/pessimistic, I just believe that as a disease with such a simple treatment and devastating outcomes if left untreated, it would be a shame to miss out and get hurt.
Hemochromatosis, although being very common, is not something a physician deals with on a daily basis, so there is little information about it aside from sporadic research.
famof10 jennifer_17312
Posted
Hi Jennifer! I'm sorry to intrude in on your thread. I actually posted for my hubby who suffered from many of the ailments of hemochromatosis, including a climbing ferritin (412). Anyway, I'm going to post more to the forum about his current and new lab work. BUT I saw your post...you're history is literally just like mine! Although I have not had any iron studies done as of yet. I gave birth in March 2016 to a boy. I'm a super active mom of 8 & am petitie 5'4" about 118 lbs. Healthy diet but have had extreme issues in my left hip joint & sciatic, left side as well. I haven't taken multi-vit since delivering. Exclusively breastfeeding. I was told B12 deficiency when my doc seen me. Went to Chiro too...pelvis was out and was in ER cause pain was so excruciatingly bad. The adjustment was poor and aggressive they said, so the ER doc sent me for Xray, figuring disc issue as well. But it was fine! I'd love to follow your thread and see what happens for you next. I'm gonna get some blood work as well and see where I'm at. The chances of both me and my hubby having hemochromatosis, and finding out now seems so impossible, but ya never know. I see how confusing it must be for you...my hubby's doc said he's fine even though he's iron loading clearly. His internist said that some people run high & he doesn't think its hemochromatosis. I really hope your ok. It's hard enough with kids & a family to take care of without this as well. But I'm glad your investigating your results & researching...being proactive is the best step! Cheers! Shanna
Ssouth1984 jennifer_17312
Posted