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Help with elevated Titanium in TKR. Any others?
Hello everyone. I had TKR's- one with titanium alloys, the other with cobalt/ chronium / nickel etc(mid 2000's). I was known to be allergic to metals, yet 2nd surgeon( had relocated) ignored this and I was not pre-tested. Have had inflammation, giving out, swollen hot knees + hair loss after 2nd surgery- from outset. Once infection was ruled out, and then I reacted to cortisone shots, I was left to my own defences. In 2017 things to a turn for the worse; was falling, had a rash on both knees and started with a patch of dyspigmentation on one foot. This progressed to now in 2023, having full body dyspigmentaiton, and a host of horrible, serious symptoms associated with heavy metals. Melisa test substantiated Nickel allergy, and the other metals are quite elevated in labs I have been ignored by surgeons and specialists since labs done in 2020 because of the elevated titanium. Some felt this was all normal, others stated that nothing can be done, because hardware... stems, posts etc are made from titanium even if the cobalt knee could be revised. Must I contine to suffer with very devastating dysfunctions? Recent MRI confirms + now metal artifacts are in both areas so ligaments etc cannot be reported on, as distorted. Has anyone experienced sensitivity to titanium? I would be grateful for any help / suggestions. Thank you, and massive blessings everyone.
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@retreat1 I'm sorry you are having such a reaction to metals and that is really tough to live with. I also had a reaction to titanium alloy in surgical plates after I fractured my ankle. Fortunately, I was able to have those removed and it solved the problem. I had skin pigmentation getting darker, throbbing pain and chronic hives in massive patches on my body that began at 6 months after the ankle fixation. I reacted to metals from pierced earrings and had to give that up years ago. I have been a patient of doctors in the field of environmental medicine and there is a practice in Texas that treats patients for implant sensitivity. If you look at this discussion with another member, I shared this information with @moprea . If you follow the discussion, this patient is working with the Environmental Health Center in Dallas and having remote followups by video conference. https://connect.mayoclinic.org/comment/860212/
I hope that this information can give you some hope for improving your situation.
Jennifer
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2 ReactionsThank you Jennifer for your response.
Yes, I have followed the discussions started by the member on the Center in Texas. I made a preliminary call also. What I am unsure of with the protocols, is , with artifacts ( parts of metallic implants ?? )in my body, would my health and safety still be compromised ,even with treatments. I have not yet gotten a definitive answer. At a loss now, I decided to reach out to this kind community.
@retreat1 How miserable! I am trying to isolate things here -
To which metals do you have a demonstrated sensitivity based on the tests?
Nickel allergy is the most common; titanium is on of the least.
Chromium and cobalt levels can be truly problematic because this is not sensitivity, beyond normal ranges, it is metallosis, or toxicity. Continued high levels of these metals can cause adverse effects on heart & circulation, brain, endocrine system and more. The only cure for this issue is removal of the offending parts - then the liver and kidneys dispel the excess ions and levels return to normal. There are alternatives to the metal-on-metal knee implant which is causing this issue IF your body can tolerate titanium or IF they can use a combo implant that consists of chromium cobalt with no contact to other metal, ceramic, and a polymer cushion.
So - what might be your next steps?
Comprehensive metal allergy testing to determine your exact level of sensitivity to each metal @jenniferhunter might be able to tell you how to accomplish this.
Removal or the chromium/cobalt/nickel joint completely (hair loss is a symptom of elevated chromium and cobalt, as is progressive muscle weakness.)
I see you have already mad some contacts. I will tell you from experience that the chromium and cobalt will continue to shed ions/particles as long as they remain, and there is no chelation therapy that can manage it long term (long story that led to bilateral hip revisions for me.)
Sue
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2 ReactionsThanks so much Sue for this response.
Melisa LTT test / Nickel / Highly Sensitive 2022
Aluminium 854 nmol/L
Chromium 8.5 "
Cobalt 3.7 "
Titanium 28.8 "
Results from initial labs 2020. I had asked for labs since 2017 and was refused. Saw professors at a Teaching Hospital. One dismissed the implants as problematic, suggesting my dyspigmentation and other symptoms could be the result of sarcoidosis, and did testing for that. When the results were NEG , I was dismissed. The other surgeon / prof told me my numbers were normal, and I SIMPLY DID NOT LIKE MY KNEES. I protested this statement, to which the response became - no options without using Titanium screws etc. Again I was dismissed from the practice. I started oral chelation / with labs every 6 months to monitor levels to help myself.
I have pretty well most of the symptoms of Metallosis, and with full muscle loss and hair and vision loss as well.
The ongoing shedding of the ions have been my concern since the results of 2020. Yet it has not been a concern for the doctors I have seen.
I will reach out @jenniferhunter to learn of the comprehensive allergy testing. Of concern is, I did the labs first and nickel was not found, just the other metals. As my symptoms worsened, I did research, and self referred for the Melisa Orthopedic Comprehensive Testing in Germany, and Nickel was the only true allergy. I suspect this causes some questions by the docs. I was told that these tests are "unreliable." I really am baffled. Thanks again.
Hi Jennifer...per @sueinmn
Where would I find the Comprehensive Allergy Testing?
Would this be different from my Comprehensive Orthopedic Metal Testing in Germany? Thank you.
I also have search results from ACAM.
@retreat1 The only other information that I can add would be the lab in Chicago that does testing for immune reactions to metals and implants. Here is the link.
https://www.orthopedicanalysis.com/
They have you send a blood sample that this kept warm in transit. This is their page about metal testing.
https://www.orthopedicanalysis.com/page/metal-sensitivity
This page is interesting that shows what metals are in an implant.
https://www.orthopedicanalysis.com/page/what-are-the-metals-in-my-implant
I did this test for metals and surgical implant materials prior to my spine surgery and it did not indicate any sensitivity for me which surprised me, and my insurance did not cover it. I was able to have spine surgery without hardware so that didn't matter anyway. It was after I received titanium plates after an ankle fracture that I began to have problems, and thankfully, I could have them removed. At the time I did this blood test, it cost around $500.
The Environmental Health Center in Dallas also does extensive testing, but I have not been a patient there. My environmental medicine doctor highly recommended them.
In regard to your comment about titanium screws being the only screws available, my comment is that I have zirconium screws holding a zirconium bridge to my zirconium dental implants. That is all ceramic and doesn't have metals in it. I don't know if there is anything similar for joint replacement. I don't know if the material is strong enough for knee replacements, etc.
I did a little searching and found this research article that may be of interest. You may be able to contact the authors and locate doctors who may help.
Research work from Hospital for Special Surgery, 535 East 70th Street, New York, NY 10021 USA
"Allergy in Total Knee Replacement. Does It Exist?"
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5264571/
The results state: There is consensus that patients with self-reported allergies against metals or bone cement and positive patch test should be treated with hypoallergenic materials or cementless TKA. Treatment options include the following: coated titanium or cobalt-chromium implants, ceramic, or zirconium oxide implants."
If you scroll to the end, all of the research is referenced and there you can click on links to that literature and find the authors. This may lead to a connection to a doctor at an institution that may help. They may know about safer implants if revision surgery is needed. Of course that is another big surgery if it is possible. The practice in Dallas does allergy shots for treatment of immune reactions. I'm sure this is a difficult decision as to what to do.
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2 ReactionsThank you.
@retreat1 You're welcome. Please check again as I was just updating my post with new information.
Jennifer
@jenniferhunter Thank you for this extensive and most valuable information.
I will be doing the required research and making contacts via the links you provided.
Thanks for taking the time to provide all this info. I am truly grateful.
I will post any positive directives.
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1 Reaction@retreat1 - I am going to leave you in Jennifer's able hands for help in solving this puzzle. If in fact it turns out to be a combination of sensitivity and metallosis, or all metallosis, feel free to bring me back into the discussion. I spent years dealing with the issue, including all the bad effects you can imagine.
From reading your story, and your metal levels, I believe you have both issues.
Good luck sorting this out. Jennifer and I have both learned there are doctors who believe it, and will help you deal with it.
Sue