Hi Emma, It's wonderful that your Ferritin is soooo low! The fact that you have gotten it so low and such a young age (as long as you keep it low) should help you avoid many of the "effects" of HH. If you were a lot older and were still having the joint pain after being de-ironed, I would think that it was due to damage done after years of untreated (because many of us are diagnosed until we are MUCH older) HH. For you, I don't know. There are many conditions that can cause joint pain. Do you live in an area where there are deer ticks? If so, you might want to be tested for Lyme disease. I would maybe check into a doctor besides your Hematologist to see what else could be causing it. When you were tested for RA was it done by a Rheumatologist? If not you might want to go that direction to see if there might be other conditions (treated by that type of doc) what could be causing it. Good luck to you and don't give up! You need to be your own advocate. You are much too young to live with that type of pain with no explanation.

Congrats on the low ferritin Emma. I have the same problem re joints, it makes walking especially very painful. If your hands/wrists/fingers etc also hurt (as mine do) it's obviously not your shoes! I suspect that damage might have been done (iron crystals accumulating around the joints) before your were de-ironed. Sadly, if this is the case, joint damage from HH is mostly irreversible, you just have to try to learn to live with it. I was de-ironed a couple of years ago and still suffer badly and am on permanent pain medication.

On the other hand you are very young, so tell the doc to keep looking. There are quite a few illnesses which can also cause joint pain. Have you had your thyroid checked? You could also try glucosamine sulphate which can often help - I know many people swear by it.

Here are some causes of joint pain >>> http://www.mayoclinic.com/health/joint-pain/MY00187/DSECTION=causes

Hi Emma,

I am in the same boat as you, my ferritin as 9.2 at last check but I have been having extreme joint pain and swelling. My Hemotologist said because the iron is so low it may cause joint pain because I don't have enough iron in my blood. I have been taking glucosomine condroiton (spellcheck). While it doesn't take all the aches away it makes it bearable. I take 2 per day and after a week I noticed a big difference. The doc said if my swelling and pain is not better at next phelb visit, she is going to give me a medication to help. I hope this helps. Becky

Will shout this from the roof top people... get checked for Lymes!!!!! One other on here has HH, and blamed her ailments on HH, but like you guys, she got that under control but still felt horrible. She has Lymes, and has had it forever.

I have Lyme, my husband has HH. Very very similar. I also test negative for Elisa twice. Was the Western Blot test that finally showed I have it. There are a huge list of symptoms for Lyme, ck out the web... eye site, neck pain, hand pain, dizzy, I could go on and on. Yell with questions! Oh, and I"m not tlaking about regular Lyme, I'm talking chronic Lyme, much worse then regular!!!

Look into the MTHFR gene mutation and it's connection to joint pain. Also vitamin D3. I think we all have vitamin deficiencies that are causing most of our pain. I have the MTHFR and need high doses of b12 and folinic acid. When I was off theses supplements came down with HH and many of my symptoms both resembled HH and b12 and folinic acid deficiency......just google. You might find some answers......I am still looking myself.....My cousin has fibromialgia and MTHFR. She finds that when she goes on a gluten free diet her joints feel better. I am also gluten free....

I completely know how you feel. I got my ferritin down to 28 and thought the joint pain would go away. When it didn't, my doctor started additional testing. I was tested for many things that included joint pain as a symptom: Lupus, RA, Celiac, Crohn's, etc. As others mentioned as a possibility, I was just diagnosed with Lyme in January (and have had it for 2 years). What is interesting is the tick bite occurred while I was pregnant and not knowing I had HH, I was on iron supplements. My doctor and naturopath believe that each have been feeding off of the other. I also have narcolepsy (I hit the genetic jackpot) which if you agree with some of the literature is considered autoimmune.

I am also gluten free and while it has not helped my joint pain, it has done wonders for the brain fog. Fibro is another possibility which my doc believes the Lyme can develop into (again literature says several things). I have noticed that fish oil has slightly reduced the joint pain. I am considering seeing a specialist just to see how much damage has been done. It doesn't hurt to check into things and based on your age, my HH doc would say that although your ferritin was that high it shouldn't have done a significant amount of damage to your joints yet. What I am saying is that he would be looking for other answers. Good luck!

Thank you all for the advice!

my hematologist said it isn't caused by iron damage to my joints since my iron has never been high I was not tested by a Rheumatologist for RA, but my family doctor did test me for Lupus, different kinds of arthritis and some other things. They all came back normal. I do have a B12 deficiency, but that's under control with monthly shots.
I take 2 Naporxen every day and that helps a lot, and i would suggest it to others with joint pain. It makes my pain manageable, but for someone with minor joint pain i think it would help a lot.

Oh question on the Lyme, i've only had one tick and I never got a red ring or any rash. We got it out before it dug its head in. Could i still have it? i don't know anything about Lyme disease haha

I never recall seeing a red rash or ring either but that said it might not appear at the location of the bite. The percentages of people that see the EM rash vary among the different sources, but not all get the rash. The CDC says that you can't get Lyme in KY but I beg to differ with them :)

I have come to believe that anything is possible. What is important is to look at all the information out there as there is a huge debate over diagnosis and treatment. Regardless, educate yourself on your symptoms so you can better educate your doctor. Also, something to keep in mind is that Lyme tests often come back negative.

Ahhh, so now there are two on these message boards with both HH and Lyme.

Ok, I did not have a tick bite, nor a bulls eye, nor can I go back and say I remember being ill and that must have been the beginning. I also went 6 months, 6 specialist, and was told to see a psych doctor and go on antidepressants. I had 2 negative Elisa tests(which is the basic test done by doctors offices for Lyme). Only thru comparing myself with a cousin who'd went untreated for 2 yrs, and who was identical to me with symptoms, did I finally push to see a LLMD< (lyme literate medical doctor). I had a western blot test done, which was positive for Lyme. Feel free to yell at me with any questions... you'd be amazed at what symptoms you have that are connected and can help pinpoint your Lyme!

I am going to shout it through the rooftop !!!
I have been taking all the lyme advise to heart and I have been patient with all my docs but enough is enough ,I am going to blow the rooftop off if I cant get tested for this ,any advise before my appt. would be greatly appreciated . Queenie

Queenie,
I'm so sorry, seems I jumped back and forth between HH and Lymes, with so many comments to so many that are on this wonderful road. Can you remind us of what your history is? Are you HH? Have you had a Elisa Lyme test done? There is no reason why your doctor shouldn't do the Elisa test, that is a very common and basic blood test. If that is negative, you should still push for the Western Blot, which is more in depth... but that's where you may run into problems with doctors, many won't do the second test if the first is negative. Then you need to pursue a LLMD doctor. (Lyme literate medical doctor). You can get a list of these docs in your area at http://lymenet.org/ and go to flash discussions. you can enter a post there with your request and someone will get you the list. Also, there is a Lymes group on this same board, go there for more info and help on getting diagnosed.