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Iron fist and joint pain

Iron fist and joint pain

Chronic fatigue and joint pain are among the first complaints of a hemochromatosis (HHC) patient but these two symptoms are not specific to HHC, except for one unique characteristic: the iron fist, which is a distinct enlargement of the 2nd and 3rd metacarpophalangeal joints (MCP) or the "knuckles".

According to the Arthritis Foundation, over 50 million Americans have arthritis but each type of arthropathy (joint disease) has clinical and radiographic (x-ray) differences.

Photo courtesy of Dr. Jan Frank Gerstenmaier

On x-ray, hook osteophytes can be seen in patients with osteoarthtitis or calcium pyrophosphate dihydrate crystal deposition disease (CPPD) which is sometimes called pseudo-gout. "Crystal arthropathy is common in hemochromatosis but many CPPD patients do not have hemochromatosis," says arthropathy expert Joanne M. Jordan, MD, MPH of the Thurston Arthritis Research Center. "The hook shape of osteophytes in the MCP joints do not make a diagnosis of hemochromatosis in and of themselves, but they should prompt its evaluation."

An osteophyte is a bony bump sometimes called a bone spur. It is a growth that results from damage or disease of the joint. Margaret Kennedy, who was diagnosed with classic hemochromatosis in the ‘90s, has suffered immeasurably with pain caused by such bone spurs. Hers dominate the small bones of her hands, toes and neck. Multiple surgeries, Botox injections, pain relievers, heat and massage therapy are approaches she has used over the decades to deal with the pain. Dr. Jordan stresses the importance of sleep; Kennedy agrees.

Many HFE patients report that joint pain is more intense when the transferrin-iron saturation percentage (TS%) climbs. They urge their doctors to do a phlebotomy in spite of a normal serum ferritin. Unfortunately this can lead to iron avidity and more pain.

Edouard Bardou-Jacquet and his team of investigators Lainé, Guggenbuhl, Morcet, Jézéquel, Guyader, Moirand, and Deugnier confirm for us in “Worse Outcomes of Patients with HFE Hemochromatosis with Persistent Increases in Transferrin Saturation during Maintenance Therapy” the consequences of iron avidity, a condition where the serum ferritin is within normal limits but the TS% remains persistently elevated. In this journal article Bardou-Jacquet et al. report that individuals with HFE hemochromatosis can experience worse outcomes such as joint pain when the transferrin saturation percentage (TS%) is persistently elevated while the serum ferritin is within normal range.

Correcting iron avidity is not always straightforward. In a few situations, ID worked with HHC patients who were iron avid and their doctors to restore iron balance. With these individuals, their physicians treated their iron avidity with diet strategies used to correct iron deficiency. In one case, it took two years to outpace iron avidity but once iron balance was achieved, the HHC patients did not need a phlebotomy. They continue to keep iron in balance with diet.

Margaret Kennedy shares her life with hemochromatosis: 

Dr. William Palmer did a video for Mayo Clinic on hemochromatosis. Dr. Palmer is one of the experts who reviewed and contributed to our most updated physician handout

Other resources:

McDonnell SM, Preston BL, Jewell SA, et al. (1999). A survey of 2851 patients with hemochromatosis: symptoms and response to treatment. American Journal of Medicine, 106 (6), 619-24. 

Bardou-Jacquet E, Lainé F, Guggenbuhl P, Morcet J, Jézéquel C, Guyader D, Moirand R, Deugnier Y. (2017). Worse outcomes of patients with HFE hemochromatosis with persistent increases in transferrin saturation during maintenance therapy, Clinical Gastroenterology and Hepatology. doi: 10.1016/j.cgh.2016.12.039.

Schumacher HR Jr. (1964). Hemochromatosis and arthritis. Arthritis and Rheumatism, Feb. (7), 41-50.



35 comments (Add your own)

1. Wes Mathers wrote:
Would you please advise me on the diet recommendation.

I have seen many diets on the web but which is the best one.

I live in Australia and feel that Australia is not up with the latest information.

My 2 & 3 fingers onboth hands are now starting to pain and swell and pain plus my neck pains so much I am not getting enough sleep around 2-3 hours in total with many wakes.

I await your reply.
Thank you Wes Mathers

Sun, April 30, 2017 @ 6:15 PM

2. Karina van Lill wrote:
I would also like to know what is the best diet for recommendat.

Mon, May 1, 2017 @ 2:47 AM

3. Todd Madigan wrote:
I would also be very interested in this diet as I'm starting to get more and more swelling and pain in several places.

Mon, May 1, 2017 @ 5:50 AM

4. Neal Prestridge wrote:
Green Tea, Green Tea, Green Tea is the best thing anyone can consume for our high iron levels. A resent University of Penn study showed that the tea binds with the iron and prevents absorption into the body. I'm not talking about a cup here or there, but lots of it. I use it as my cold drink of choice and have it with all meals (exception, I still love my fresh roasted coffee in the AM). I have been able to go 3 months now without needing to get bleed, where I was on a 4 week regiment to maintain <25 Fe. It also has an anti-inflammatory property that may help/prevent in joint pain. I brew mine with fresh ginger and honey for added flavor.

Gout is my main cause of joint pain, so keeping away from things that cause gout and keeping water in the system is important. The question you have to ask yourself, is there something that you eat that causes or sets-off your particular type of Arthritis.

Mon, May 1, 2017 @ 7:28 AM

5. Sylvia Cameron wrote:
I too would be interested in the diet recommendations from your clinic. My ferritin is normal after a year of theraputic phlebotomies (every two weeks), but my joints (thumbs) are getting increasingly painful.

Mon, May 1, 2017 @ 7:54 AM

6. Pam Foye-Needle wrote:
I definitely have a painful bone spur on my neck from old car accidents (whiplash). Do tons of massage, chiro and PT. Our insurance is good about covering.

I have a follow up with my doctor this week, so will bring this info in.

Not sure how the phlebotomy will go as I am pretty thin.

Thank you for this newsletter, kinda overwhelmed with this.

Mon, May 1, 2017 @ 9:38 AM

7. Noreen Maine wrote:
After watching Dr. Palmer's comments on Hemochromatosis, I was surprised when he mentions that men should be tested for the condition with no reference At all to women. I for one am female and have classic hemochromatosis (2 copies of c282Y gene). If you are new to the condition and doing research, his comments would have sounded as though only men can have the condition. I found this very misleading, especially coming from the Mayo Clinic.

Tue, May 2, 2017 @ 7:22 PM

8. Ann Curtis wrote:
I have been seeing Green Tea a lot when it comes to helping lower iron absorption. However. I doctored with a Naturopath a few years ago. He had me drinking 4 cups a green tea/day I did that for almost 2 years. I developed chelitis/stomatitis at the corners of my mouth as well as my lips turned purple and ballooned up, then would peel.

I am actually allergic to green tea. I can drink black tea and a little white tea, but must carefully monitor that I do not drink too much (I can tell by how my lips feel).

Any other recommendations other than Green Tea? I cannot drink cow dairy milk, as I have an IgA casein allergy. I usually drink water with meals, a hot cup of roasted dandelion tea after breakfast, I have a 16 oz cup of iced black tea between breakfast and lunch, and I have a hot cup of chamomile with lavender tea after supper. Anything else I can do?

Wed, May 3, 2017 @ 4:48 PM

9. wrote:
Many thank you for the information, it's good when you are aware of this and can successfully deal with a joint pain. May nobody ever practice this, but nevertheless thanks!

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11. Jodell Bromeland wrote:
I have been a patient of the Mayo Health System in Rochester & Albert Lea, Minnesota for over 20 years. It wasn't until I saw one of your Neurologists in 2016 that I was diagnosed with Hemochromatosis. I am wondering why it took so long before anyone to figure it out. I had all the side effects: Bronzing of the skin -the dermatologist just gave a cream- which did nothing; My feet are covered in spurs - both bottom & top, swollen legs along with bulging heels - which a Canadian Doctor recognizes as a side effect & I can no longer stand in one place more than a minute without pain; I had Uterine Cancer & a Mushy Gallbladder, my research has said both side effects. My Hemoglobin has always been very high! I've had many blood tests and no one bothered to check my ferritin level during all that time! I think that the great Mayo Clinic should start training their doctors and include checking people's Ferritin levels, especially in Minnesota where most of the population is Northern European background. I got my genes from my Swedish Father and Irish Mother. I like my present doctor - a hematologist - but I find I don't have much confidence as diet is keeping my iron low, but I am still fatigued with brain fog, painful feet & joints, and my Bone Spurs continue to grow larger, all limiting my activities of daily life.

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17. wrote:
joint pain is more intense when the TS% climbs

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18. Mollins John wrote:
I have Haemachromatosis, I have degenerated cervical spine disease which I had too have C5-C6 Discs replaced in my neck. I have joint pain all over, my hands are really painful and also my knee's. I was diagnosed with arthritis in my knee's but all the tests I have none of the doctors can explain what is happening, They say everything looks ok. My hands were examined by a surgeon who said I have arthritis so sent me for X-Rays. When the X-Rays came back they showed a small amount of arthritis so they have decided not to do anything even though its been over 4 years since I have had these problems. My shoulder have Bursitis and rotor cuff tears hence pain in my shoulders. More needs to be done about Haemochromatosis and doctors need to be made fully aware of the complications of this disease. I also have NASH-Non Alcholic Steto Hepotitis, Liver Cirrhosis, Abnormal liver function tests, Sleep apnea, Diabetes, high blood pressure, Anemia lack of folic acid. Pain has become a part of my life as when I had my discs changed in my neck, the nerves got badly squashed and I still suffer with bad cutting like nerve pains all through my body. I have wrote this so people can start to realise just how bad this disease is, I still have a job and go to every day. Even my work do not understand how some days I wake up and cannot move because of the amount of pain I get in, but I force myself into work to make sure that I do not lose my job. People need to be made aware this is disease that effects everyone differently. I would love to hear from people with same or similar conditions and what has been said about them.

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