Wilson's Temperature Syndrome

[JJWatkins]

Has anyone heard of Wilson's temperature syndrome?  If so, what do you make of it?

With all the symptoms, including low bbt, but still "normal" thyroid tests, would this be something to pursue?

I think I've found a naturopath close enough that is familiar with this, so thinking about making an appointment.

But he doesn't take insurance, so before I spend a ton of money, would love feedback if this is real or just junk science.

Thank you.


Here are my other threads which contain my current issues (thanks Gimel for making me aware I should include this!):

http://www.medhelp.org/posts/Autoimmune-Disorders-/Direction----which-way-to-go/show/2428649#post_11797826

http://www.medhelp.org/posts/Thyroid-Disorders/Can-I-get-feedback-on-these-two-specific-questions/show/2430675#post_11808823

[flyingfool]

Ultimately I think the issue is a low thyroid condition and the cellular level is where the rubber meets the road.

I too have "normal" blood labs.  All I can say is that I finally got a Dr to prescribe a minimal dose of thryoid (T4 at 12.5 mcg per day) as a clinical trial.  My joint pain went away and for the first time EVER in my entire life, my hands and feet do not get cold.  For the first time EVER deer hunting (in Upper MI) my toes did not get cold. And much of the time I never wore gloves and my fingers stayed warm!  It was AMAZING.

There are a LOT of people walking (Barely in some cases) around suffering from the symptoms of low thyroid or marginally low thyroid and left untreated. Their lives and the lives of their family's suffer because the state of the medical training and industry simply do not recognize this.

The Drig companies LOVE it though. As they get to sell you 6 different drugs to "solve" 6 different sysmptoms when one cheap and inexpesive thyroid pill would solve all 6 issues!

Keep in mind that the Drug companies donate huge amounts of money to medical schools and also for medical research.  What effort do you suppose that the drug companies want to put into researching adjusting the thyroid "normal" ranges or promote teaching med students to look at TSH only?   ahhhhh ZERO!

[Jaybrooke]

I read up on wilsons syndrome years ago in 1997 . I had many of the symtoms and low basal temp . All my thyroid tests came back normal plus other tests.for various illnesses normal , I was so ill and no doctor or endo could help or would ! After a few years I was told I had CFS go home and live with it. I have just been diagnosed with hashimotos s disease after 19 years of suffering the most debilitating illness. Personally I think hashimotos is the same illness as wilsons syndrome if you compare the list of both there is a definite simarlarity . The treatment is much the same thyroid hormone tho dr Wilson believes thyroninine ( T 3) is the most important or getting the correct dose of a mixture of T 3 and T 4  which is same for hashi to be the answer . With hashi the blood tests are often normal what is needed is antibody tests and ultrasound . I am not an expert on this illness this is only my opinion and I know dr Wilson has been pilloried for his work but I do think he has studied patients with similar symptoms and come up with the same disease that was first diagnosed in the 1920 s

[LazyMoose]

I posted a poll on this.

[JJWatkins]

Thanks, yes I did just reply.  Was trying to let the info process!

I have done BBTs throughout the years and it's always been mid97s, dropping occasionally into 96s and up to low 98s very rarely.  I NEVER get a fever when I'm sick.  I'm cold all the time and ALWAYS have a blanket on me, even in the summer.  

I've also had tingling in my hands and some my feet.  They feel stiff but don't really appear swollen.  Several years ago I'd asked my doctor about my fingers getting "stuck" when gripping something, like turning a small knob, like they would get stuck in that position for a few seconds longer than normal.  She said she had no idea.  May have nothing to do with it.

Trouble is, I've had days lately where I did feel like I didn't have much time left.  It's not a psychological feeling really, it's just I don't feel well and some days I feel like I'm just getting worse.

Anyway, sorry for rambling.  I have gotten an appt with an endo who supposedly will go by symptoms and I do plan to come with a lot of info, so fingers crossed maybe I can persuade them to try.

[gimel]

Wilson's Temperature Syndrome is frequently identified as being thyroid hormone resistance at the cellular level.  There is lots of info about things that contribute to this, and lots of disagreement, mainly with the Wilson recommended treatment, which was hard to administer and control.  

Rather than diagnosing by temperature only, another measure of tissue thyroid levels is reported to be the ratio of Free T3 to Reverse T3.  A low ratio can contribute to hypothyroidism.  Supposedly the only treatment for WTS was T3 only until the excess Reverse T3 cleared.  In reality there are numerous underlying contributors and a number of approaches to resolving the problem.  I was successful in resolving such a problem by reducing my T4 intake and increasing my T3 med, while also correcting a deficiency in ferritin level.  

[JJWatkins]

Never mind.  Should have searched before posting this question.

I guess I just don't believe I'll ever find a doctor who will be willing to give me a trial since my tests are all normal.  Thought maybe this was a possibility, but see from many comments that it is highly disputed.

So the search continues.