Wilsons Syndrome And Intro

[CarolB]

Couldn't figure out where to post but this seemed like a good one. My health history is a long one that begins at birth and I'll be 68 in June (female). Back in 86 I gave up on doctors a took matters into my own hands eventually receiving 14 diagnoses and doing every thing under the sun. Nothing worked to get me completely well. It's a long story I won't go into. Around 98/99 I discovered WS and after many months found a doctor to let me try it. However, he was convinced my problems lied else where (I didn't agree with his diagnosis) and would only allow me a 3 month trial. Nothing happened in that time. I went on to learn alternative things about thyroid from a nurse on a fibromyalgia group. I began thinking that Dr. Wilson missed it and that there were many under diagnosed and treated low thyroid folks out there. 6 grains of Armour later, I lost way to much weight and kept all my symptoms so I gave it up.

Like I say, this is a long story. Recently through a series of events (got really sick with a fever and wild symptoms, first time in years) and when the fever left 6-7 days later, my low temp dropped which causes it's own problems. I finally typed the right thing into the search engine and after 31 years of diligently searching and doing everything under the sun came to the revelation that I have been trying to treat symptoms rather than root cause as I didn't know what the cause was (though I new I had a low temp and it wasn't normal).

Now I'm on a relentless search for raising my temp back to 98.6. Years ago, my daughter and I were down town and when we got home I came bounding into the house saying "GEE! I feel pretty good today and we are getting things done. I wonder what my temp is". Low and behold, it was 98.6 (mercury thermometer). Didn't last.

I'm back looking at WS again thinking I might be one that takes a year since I've been sick for so long. I found a Naturopath I could easily get to in a day who is WS certified and meets the description of a doctor I've been trying to find for years but haven't. I haven't been to a doctor and years and kind of gave that up, looking at diet/nutrition etc. I've spent $$$ over the years. Problem with the naturopath is she doesn't take insurance so I would have to pay out of pocket. DH is less than thrilled as I've spent $$$ that wound up in dead ends. I won't go without his ok and I know he means well (would love to see me get well) but doesn't understand. I'm not giving up. Would love it if I could get the T3 and do it on my own but I need a prescription.

I found this website while searching just now and decided to join. What brought me here was reading about Steve Richfield (which I read about last week). I'm desperate enough to even try the crazy cytomel experiment he did but there again, I have no idea how he got it with out a prescription. Looking forward to meeting every one. BLESSINGS, CarolB

 

[CarolB]

I finally found out how to post in the new member thread (just posted in T3). I'm almost 68 years old and a female with a long story I won't go into. Problems started at birth and progressed. Long story short is that I was recently led back to what I believe is the root cause of all my craziness. My consistency low body temp. while I've been trying to find answers to symptoms not knowing the root cause, I now believe I've found the root cause. This led me back to Wilson Syndrome which I tried years ago but the doctor I saw only allowed a three month trial.
I'm now on a relentless quest on HOW to raise my temp back to 98.6. Found this website while searching and saw some posts about Steve Richfield whom I read about last week. Thought I'd join and see where it leads me. Seem to Remember Ray Peat from years ago when I started searching.
Blessings on everyone.

 

[Giraffe]

Welcome to the forum, CarolB.

(just posted in T3).

I merged the threads.

 

[CarolB]

Welcome to the forum, CarolB.


I merged the threads.

Thanks.

 

[nikkmm]

Carol, I think you're talking about Wilson's temperature syndrome right? As in this:
http://www.wilsonssyndrome.com/restore/medical-treatment-of-wilsons-temperature-syndrome/

I have read the literature and website and he seems to be very in line with Peats views on t3 being therapeutic in some cases. I would like to get my hands on some sustained release t3 also. But you could try my Mexican drugstores cytomel (t3 only) and take tiny pieces throughout the day to mimic the concept.

 

[HLP]

I finally found a doctor who recognized Wilson's Syndrome only because his wife has it. He monitors my thyroid on a monthly basis. I'm taking Synthroid and Cytomel which have made a huge difference in my ability to function normally. @Carol B where are you located?

 

[CarolB]

I finally found a doctor who recognized Wilson's Syndrome only because his wife has it. He monitors my thyroid on a monthly basis. I'm taking Synthroid and Cytomel which have made a huge difference in my ability to function normally. @Carol B where are you located?

Thank you. I found a naturopath on Dr. Wilsons website who treats it and is certified. Plus she fits the description of a doctor I've been looking for over the years and never found. DH was less that thrilled when I first told him as he is retired and naturopaths don't take insurance. I've spent $$$ of dollars over the years trying different things that led to dead ends. So I told him to pray about it and I would abide by his decision (we believe in that). Two days later while out at lunch he told me he had decided to let me go as that's what love would do. He doesn't really understand all this but does want to see me get well. My appointment is this Tuesday and I'm very excited. I came to the realization that I've been treating symptoms and while I've done good things diet/nutrition wise, none of that got me well because it can't raise body temp and that's why I'm still sick.
We'll let you know how the visit goes. I am in Sonora, CA and the doctor is in Sacramento (El Dorado Hills). Thanks again

 

[HLP]

I know what you mean by spending lots of $$$$ and getting no where. I did this for many years and finally found Ray Peat and Lita Lee who were the only ones who helped me. This led me to find an MD who could and would help me finally. Keep me posted on your progress.

 

[CarolB]

I know what you mean by spending lots of $$$$ and getting no where. I did this for many years and finally found Ray Peat and Lita Lee who were the only ones who helped me. This led me to find an MD who could and would help me finally. Keep me posted on your progress.

Thank you so much. I'll be 68 in June and have a lot of catching up to do on life. For starters, cleaning and organizing my house and keeping it that way.

 

[CarolB]

I saw the naturopath yesterday and it was interesting. Didn't necessarily go the way I had hoped but I'm not ready to pass judgement. My health history is so long and entailed I think she was over whelmed and getting confused by things like the difference between the chronic fatigue (drop in an already low temp causing severe aching and fatigue) and the daily tiredness, lack of energy etc. I could write to her and tell her a whole lot more. I gave her a 4 page summary where as my original health history I wrote for my chiropractor years ago was 14 pages. We spent an hour together and between all her questions (some I couldn't answer because I've been to sick to keep a journal of dates, length of times for things like diets, medications etc), and all my interruptions with things I felt she needed to know (she realized real quick that when I said I had ADD I was RIGHT ON! LOL). But the basic idea of my needs came out.

She sees adrenal fatigue all over me (I agree) as well as possible thyroid problems. I did 6 grains of armour once (was allowed to up based on symptoms by an anti aging doc) and lost way to much weight but kept all the hypo symptoms (and no heart palpitations or any other hyper symptoms). I weaned off of it. She told me that Armour doesn't work for everyone. No other doctor over the years would do anything as they all told me my thyroid was normal. So besides WS treatment for 3 months I've never tried anything else (cytomel, synthroid or whatever).

She also kept going back to food allergies which I REALLY DON'T think I have. I've done GF (for a year strict), grain free and many other things as well as the fact I've learned to be in tune with my body. Wanted me to spend $$ on a blood draw but I've put that on hold. Wants me to give up sprouted grain bread but I'm not sure why since I've done that before and it made no difference.

I did do a complete thyroid panel and will be anxious to see how that comes out and what she says. Also, I have a kit from Meridian lab in WASH coming to do a 24 hour saliva test for hormones and adrenals.

She also wanted me to go to her website and order a bunch of supplements she thinks are good. I've decided to hold off on that. EXPENSIVE and I just spent money on the visit and the saliva test and blood draw. She told me insurance wouldn't cover the blood test but they are billing my insurance. YAHOO Most of supplements I've tried but maybe not these brands. I do see thyroid/adrenal in all my symptoms (more than food allergies) and I'm hoping something shows up and I can try some sort of treatment again that will work. Then I will feel well enough to fine tune all the other stuff. She has had success with WS treatment but told me in her experience it's always a multifaceted problem. So we'll see where this leads.

I am reading a Ray Peat survival guide I got on Amazon and I don't know what to think. LOL I did run into a gal when I was first led back to low body temp, who increased her daily health fats (coconut oil, raw butter etc) as well as someone who increased carbs and sugars and brought their temp up. the first gal said to give it a month and be prepared to get worse first. I'm trying that as I believe in healthy fats and figured it couldn't hurt.

I've also read an article about Steve Richfield (someone mentioned him on this forum) and he did a crazy experiment with Cytomel and got well. Would have to get it w/o a script. Another thing Steve said was that if you had a low temp for years (which I have) it's harder to reverse it as it wants to fight to stay there. But he said it can be done and I believe that. I'm definitely not up to expresso/hot showers, lots of clothes and blankets etc. To much work for me LOL

 

[artlange]

You might start listening to Ray Peat's interviews on KMUD. Since you are taking responsibility for your own health, you need to get the best information you can, thus the suggestion to listen to Ray directly. There a lot of links through this forum in the Resources tab on the top bar.

 

[CarolB]

You might start listening to Ray Peat's interviews on KMUD. Since you are taking responsibility for your own health, you need to get the best information you can, thus the suggestion to listen to Ray directly. There a lot of links through this forum in the Resources tab on the top bar.

KMUD?

 

[moss]

KMUD?

KMUD Radio-The Herb Doctors

 

[CarolB]

KMUD Radio-The Herb Doctors

I tried typing in KMUD yesterday and got many different things. I'll try typing in just that. BTW, is Ray Peat even still alive? Could never find that info. Think I ran across him years ago. Thanks

 

[artlange]

use the Resources tab on this ray peat forum, near the top of this page.

it will lead you to here
Resources

then click on audio interviews, and start listening. I use a mp3 player so I can listen at 1.5 to 2.0 times speed.

 

[CarolB]

use the Resources tab on this ray peat forum, near the top of this page.

it will lead you to here
Resources

then click on audio interviews, and start listening. I use a mp3 player so I can listen at 1.5 to 2.0 times speed.

Thanks. I found them earlier but haven't had a chance to listen. Came as a download? So I have to go to my download folder to pause if necessary.

 

[artlange]

Would love it if I could get the T3 and do it on my own but I need a prescription.

I found this website while searching just now and decided to join. What brought me here was reading about Steve Richfield (which I read about last week). I'm desperate enough to even try the crazy cytomel experiment he did but there again, I have no idea how he got it with out a prescription. Looking forward to meeting every one. BLESSINGS, CarolB

I bought T3 at idealabsdc.com/lab
for the Richfuield protocol I used a few drops of T3 on my wrist. my temp came right up (I was also dressed to maintain the wanted body temp (98.6F).

 

[CarolB]

I bought T3 at idealabsdc.com/lab
for the Richfuield protocol I used a few drops of T3 on my wrist. my temp came right up (I was also dressed to maintain the wanted body temp (98.6F).

Did you have hypo thyroid and adrenal fatigue symptoms? Did they disappear permanently? I finally went to a naturopath (first doctor inn over 10 years) who did a complete thyroid panel and 24 hour urine test to check for adrenals/hormones. Waiting to get the results. Was on armor at one time and lost to much weight but kept my hypo symptoms. Found out not everyone does well on Armour. Thanks for the info.

 

[artlange]

I had low metabolism symptoms about 6 months ago and used Nutri-Meds NDT (natural desiccated thyroid) and dietary changes (milk, calcium, sugar, salt, orange juice, liver) to stabilize my waking body temperature. (ref Ray Peat and Broda Barnes). Most of the low metabolism symptopme have gon away. (skin on legs not scaly, hair color coming back - a lot less gray hair, proper waking body temp) My HMO refused to give me some of the thyroid tests (e.g. reverse T3) but it didn't matter. I started the NDT and watched my temp and heart rate. When I measure temp and heart rate, I have the essential information to modify my NDT dose.

recently I noticed my low daytime body temperature and I am still resetting my body temperature. (using T3) In Steve Richfield's papers he mentioned some people on thyroid have a harder time resetting their daytime body temperature set point. That may be me. The good news is I don't have symptoms of low metabolism. (eg, my hands now are always warm. I sweat when I exercise.)

Steve Richfield mentioned T2 as slightly better than T3 for resetting temp set point.. I found some high dose (100mcg) T2 ((Thyro-T2 from BioCor) Steve suggested to open the capsule and divide the contents on a glass plate with a razor blade to get the 12mcg dose. (1/8 of the contents.) No doctor is needed to get these materials. I did also get some T3-T4 from idealabs to use it for the T4 part of Steve's protocol.

 

[CarolB]

I had low metabolism symptoms about 6 months ago and used Nutri-Meds NDT (natural desiccated thyroid) and dietary changes (milk, calcium, sugar, salt, orange juice, liver) to stabilize my waking body temperature. (ref Ray Peat and Broda Barnes). Most of the low metabolism symptopme have gon away. (skin on legs not scaly, hair color coming back - a lot less gray hair, proper waking body temp) My HMO refused to give me some of the thyroid tests (e.g. reverse T3) but it didn't matter. I started the NDT and watched my temp and heart rate. When I measure temp and heart rate, I have the essential information to modify my NDT dose.

recently I noticed my low daytime body temperature and I am still resetting my body temperature. (using T3) In Steve Richfield's papers he mentioned some people on thyroid have a harder time resetting their daytime body temperature set point. That may be me. The good news is I don't have symptoms of low metabolism. (eg, my hands now are always warm. I sweat when I exercise.)

Steve Richfield mentioned T2 as slightly better than T3 for resetting temp set point.. I found some high dose (100mcg) T2 ((Thyro-T2 from BioCor) Steve suggested to open the capsule and divide the contents on a glass plate with a razor blade to get the 12mcg dose. (1/8 of the contents.) No doctor is needed to get these materials. I did also get some T3-T4 from idealabs to use it for the T4 part of Steve's protocol.

My problems started at birth and progressed. I've had low thyroid/adrenal symptoms for over 30 years and a below normal temp for at least that long. Plus, by the time I was 20 it started dropping even lower and leaving me with severe chronic fatigue. I'm back looking into Wilson Syndrome which is cycling on and off T3 until your temp resets and your symptoms disappear. The doctor who allowed me to try it said it wouldn't work for me (didn't think that was my problem) so he only allowed me to try it for 3 months. If this new naturopath can't help me (and I'm believing she will be able to) I will be back here trying some of these things. I'm 68 and have NEVER been able to sweat. But if it's humid I can't stay dry. Low energy, re occurring fatigue, body aches, fibromyalgia, puffy eyes, throbbing face, shortness of breath, brain fog, no sex drive to name some of the symptoms. I am adding more coconut oil and products. When I started that I think I over did it and really went through it physically. Found out you can detox from coconut so I had to back off. Thanks again.