Mom diagnosed with Rheumatoid arthritis, what to do?
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@irs said in Mom diagnosed with Rheumatoid arthritis, what to do?:
My mom was diagnosed w/ Rheumatoid arthritis today. She's had a number of weird auto immune type things happening over the past few years, which is wild because her entire life she was in perfect health. Over the past few years she's had shoulder surgery, knee surgery, and she's waiting to find out if she'll need her gallbladder removed this week. In addition, she's has allergic reactions to medications, food and environmental stuff that never bothered her before, one doctor said perhaps she has mast cell activation. It feels like she's at the emergency room once a month at this point with a different issue.
Worth mentioning she had her thyroid removed 30ish years ago. From what little I know about thyroid stuff, her body temp is always in the 97's, has thin brittle hair, hasn't been able to lose weight the past few years, so I feel like they've never really nailed her thyroid dosage.
I feel like her thyroid issues are playing a part in all of this, also feel like there has to be some kind of histamine connection or something else with all the allergy/auto immune stuff?
Where do we even begin with this?
I think the #1 thing to do is to focus on her hypothyroidism. I am hypothyroid, was diagnosed about 45 years ago. I was stricken with rheumatoid arthritis in 2014; I lost the use of my thumbs and was incapacitated to the point of needing to go into assisted living. But I found Ray Peat's website and learned that my RA was probably related to my hypothyroidism being inadequately treated.
I searched out a good endocrinologist with over 50 years of medical experience. He changed the brand of my desiccated thyroid med I had taken for 20 years from Armour to NP Thyroid by Acella and kept the dose (90mgs) the same to start with. Within a week all the RA inflammation disappeared; I learned later that Armour had "reformulated" their product which had ruined it. Over the next 9 months, this doctor carefully increased my dose (with full panel thyroid blood testing every 6-8 weeks) until he was satisfied that my dose was "optimized" which turned out to be double the dose I had been taking when the RA struck.
NP Thyroid by Acella is an excellent desiccated thyroid medication. A good way to shorten the search for a competent doctor for help is to ask your local pharmacists which doctors prescribe it. They seem happy to provide that information.
Ray Peat on arthritis:
Blocking Tissue Destruction
"A very healthy 71 year-old man was under his house repairing the foundation, when a support slipped and let the house fall far enough to break some facial bones. During his recovery, he developed arthritis in his hands. It is fairly common for arthritis to appear shortly after an accident, a shock, or surgery, and Han Selye's famous work with rats shows that when stress exhausts the adrenal glands (so they are unable to produce normal amounts of cortisone and related steroid hormones), arthritis and other "degenerative" diseases are likely to develop."But when this man went to his doctor to "get something for his arthritis," he was annoyed that the doctor insisted on giving him a complete physical exam, and wouldn't give him a shot of cortisone. The examination showed low thyroid function, and the doctor prescribed a supplement of thyroid extract, explaining that arthritis is one of the many symptoms of hypothyroidism. The patient agreed to take the thyroid, but for several days he grumbled about the doctor 'fixing something that wasn't wrong' with him, and ignoring his arthritis. But in less than two weeks, the arthritis had entirely disappeared. He lived to be 89, without a recurrence of arthritis. (He died iatrogenically, while in good health.)"
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@irs There's a patented Ray Peat selve for arthritis that helped my mom greatly, I recommend it you try this.
https://twitter.com/BradCohn/status/1720098314266550705?t=pe6l9N41iZ899yedmZz6pw&s=19
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Excellent post @JulofEnoch one thing I would reconsider is Levofloxacin. It’s not a safe antibiotic
https://www.hormonesmatter.com/fluoroquinolones-101-antibiotics-to-avoid/
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Absolutely correct- Levofloxacin can cause spontaneous tendon rupture in rare cases. It's due to the anti-cell division effects. I believe that Levofloxacin also inhibits protein synthesis and amino acid uptake- hence why I said that adequate protein intake is a necessity. I realize that my language suggests using Roxithromycin and Levofloxacin as they "stand out". That was not my intention but I take responsibility on it.
I'd ask the doctor about tetracycline antibiotics due to the good safety record @irs but you'd be smart to focus on:
getting proper thyroid(@mostlylurking notes their shift from Armour to NP Thyroid benefiting them due to a "reformulation" issue, thanks @mostlylurking for confirming my suspicions and rumors, also that their dosage ended up being double their original dosage!)
Vit E
K2 mk-4(@Regina noted in this very thread that the Kuinone from idealabs has been good for her),
more BCFA in her diet
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Bookmarked and downloaded that linked page btw. I hadn't heard of Hormones Matter before, thanks for the share.
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I appreciate your kind words on my little write-up. I simply have the privilege of good internet and I know what I'm looking for. I give thanks to @haidut for sharing many of the linked studies first on the forum(I'm not a RPF member but google searching "xyz ray peat haidut" is about as effective as pubmed for many things)
Your first thoughts of K and E are certainly correct! More so than many doctors who'd throw some immune suppressants into the mix.
Glad to hear you've had good results with Kuinone. I do not have spare income for supplements. at this time, but it's on my list of first buys from idealabs. Vit E is so versatile, I'm not surprised that your 400mg dosage has helped. I've mostly taken my Vit E if I have to eat out or I'm eating liver to assist the retinol absorption and whatnot.
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JSYK, there's some evidence to suggest that baking soda improves antibiotic effectiveness. This is true for several cases of antibiotics but if you use tetracycline then it may actually reduce efficacy because tetracycline uses a pH gradient to enter cells and bicarb reduces that gradient, making it harder to enter the cells. That being said, bicarbonate is an intrinsic antibiotic, even in concentrations of 0.5-1 tsp per 1L of water.
It's worth talking with your mom's doctor about a 2-3 month session of bicarbonate alongside the other non-antibiotic supplements and thyroid in order to repair your mom's gut barrier, reduce her RA, boost her thyroid, and get good protein in before doing antibiotics which may be too much on her system without reinforcement and support.
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@JulofEnoch re: hormonesmatter.com: They have some excellent articles about thiamine on that site. The articles about hormones, I suspect, are possibly influenced by newer "research" paid for by the estrogen industry. I prefer to rely on Ray Peat's articles/interviews about hormones myself.
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@mostlylurking
thanks
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This is such wonderful advice, thank you so much! I've shared all of this with her. Interestingly enough she was on Armour Thyroid so this is all starting to add up.
She does have a pretty good doctor that looks at things from a functional perspective and my mom talked to her today and she said between the gallbladder and arthritis stuff/autoimmune stuff, wondering if she has SIBO.
So next steps are testing for that, hormone testing, potential antibiotic, then we can look at supplementing with progesterone, DHEA, vitamin K, baking soda (with the gallbladder stuff I don't know if she can handle it at the moment), vitamin E and whatever else has been mentioned, along with upping the BCFA (also finding a better endocrinologist - great suggestion calling up the pharmacists to reverse engineer finding a good one)
Thank you again for all of your help!
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@JulofEnoch Also really great callout of not immediately jumping to an antibiotic. She has allegedly been taking oil of oregno for an extended period of time, wondering if that screwed up her gut flora, and with the gallbladder stuff it just seems like her digestive system is very tempermental right now and throwing an antibiotic at it might either really help or be way too extreme at the moment.
Baking soda seems like such an easy, cheap add as well with relatively nothing to lose
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@irs said in Mom diagnosed with Rheumatoid arthritis, what to do?:
She does have a pretty good doctor that looks at things from a functional perspective and my mom talked to her today and she said between the gallbladder and arthritis stuff/autoimmune stuff, wondering if she has SIBO.
Another thing to consider is trying some thiamine. When people get on the far side of 60, absorption of thiamine via the intestine gets poorer and poorer. So lots of people wind up with a thiamine deficiency. Thiamine deficiency is now believed to play a part in most/all of the dementias including Parkinson's Disease and Alzheimer's.
Here's some links for your consideration:
https://www.hormonesmatter.com/sibo-ibs-constipation-thiamine-deficiency/
https://www.hormonesmatter.com/dementia-thiamine-deficiency/
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@mostlylurking awesome, thank you. I started taking thymine for post concussive symptoms and it's wild how much better i felt almost instantly
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@irs Great news! I'm so glad it's helping you.
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@irs hope this helps! https://constantinek.substack.com/p/autoimmunity
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@Sophocles amazing, thank you!
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Ok so the latest update is that her gallbladder is fine - they did a CT scan and her gallbladder, liver etc all looked wonderful which is wild considering the surgeon was about to take it out lol
So now they're leaning heavily towards SIBO and she's going to take a test next week to see if it is in fact that, who knows if it will be. One of the frustrating things is the way the medical system works, you have to wait to take the test, then take the test, then get the results before taking any action, and she's been in tremendous pain from this.
I figure there are things she can do in the meantime that won't necessarily hurt to see if it provides some relief. She said papaya enzymes are one of the few things that seem work, which makes me think its a stomach acid thing. I suggested she take some activated charcoal and see what happens.
I passed along all of the advice in this thread so she can start incorporating that as well, thank you again!