Hi folks

I'd be interested to hear from anyone who has been diagnosed with/has symptoms of Wilsons Thyroid Syndrome.

Generally my symptoms fit the bill and I would love to share info with others in the same position.

What is it exactly?

My understanding is that it is a low functioning thyroid problem which features low body temperature and responds well to treatment, even healing completely in many cases. Here's the website:

http://www.wilsonsthyroidsyndrome.com/

Sounds like a herbal treatment for hypothyroidism to me. Everything that describes hypothyroidism also describes what Dr. Wilson describes as "Wilsons disease". Looks like a money making thing to me. I have nothing against alternative treatments BUT... I had all those symptoms 1 1/2 ago and it was discovered that i had 2 kinds of cancer in my thyroid... long story short.. i am on synthroid and healing well. The T3 that's prescribed in Wilsons disease is just another typre of med therapy they prescribe for thyroid disfunction. I'm not saying he's wrong. I'm just saying that the article seems to "poo poo" hypothyroidism, treatments etc... Thyroid disfunction is fixable , and should be seen as serious....whether it's hyper or hypo. JMHO.

I didn't mean that I think this can only be treated with his special preparations but that the symptoms he describes fit my own.

In consultation with a hypo friend who is recovering from being very ill, I've been supplementing over the last few months with VCO and a good multivit which contains selenium, zinc, iodine and all the B vits, plus (more lately) l-tyrosine and high doses of EPA. I've noticed over the months an increase in my basal body temperature and several of my eyebrow hairs have started growing back in my bare patch, which I think is a good sign.

I was interested to speak to others who are in a similar position to me, that's all.

suffer ammeorhea (missed periods) as well. I am glad there is someone else in the world who may understand my problem too. I went off the pill well over a year ago and still haven't gotten my period. I will make a long year short.

At first I was diagnosed with PCOS because I had cysts on my ovaries but after lab tests I was diagnosed with hypogonadism because I was not making estrogen. Basically every month I have an egg but it doesn't have the proper hormones to mature so it develops into a cysts. I also have signs of depression, acne, weight gain around mid section, fatigue.

I would like to be come pregnant in the next year. A Reproductive Endocrinogist and my gyno suggestions are to go back on the pill and take Clomid or injectibles to become pregnant. To me this is scary and I truely believed in my heart there was something more wrong with me and I want to fix it before conceiving.

I am suffering from excess cortisol which has lead to hypothyroidism. I have been documenting my temperatures throughout the day. They are about 97.1 upon waking up in the morning, 98.0 in the afternoon and 96.5 at night. I also noticed after I worked out my temperature drops to 91.0 or 93.0. My regular gyno has ran TSH, t3, and t4 test but oh course can back ok. I now know there should be alot more Thyroid tests done. At this point I thought maybe I had Wilson's sydrome.

I emailed a dr on line he suggested I have estrogen domiance. Thank God I found him because he found what was causing this even I have not confirmed hormonal levels yet from lab results. I believe this can about from excessive running and stress. I believe I have excess cortisol which inhibits the production of progesterone and causes hypothyroidism symptoms. I just found this information out and I am going to try to get into an endocrinolgists.

Meanwhile I am taking progesterone cream, coconut oil, liver and adrenal gland support to see if I can get my temps to rise and speed up my metoblism. I might also try acupuncture.

Wilson's Syndrome is also know ast Syndrome X or Metabolic Syndrome. It is a groupin together of several symptomes and disorders. Mostly related to the Thyroid and Insulin Resistance.

I've got it too. My temp hangs around 97.6 F. Sometimes it's lower. When it get's close to what is considered normal I know I am sick. It has been this way since before I can remember. At least 15 years.

Ok at least I know mine has just been discovered and I am 30 years old. Do you take medication?

After five doctors, I finally found a great doctor (#6) and he diagnosed me with Wilson's. Prior to him, my other docs had suggested everything from depression to "possibly MS." Whatever! The first thing #6 put me on was a good quality multi-vitamin and an adrenal supplement (Cytozyme-AD) and that immediately made a difference - - but a few weeks later, he started me on T3 (Cytomel). Later, he put me on another adrenal/hormone supplement - pregnenolone (mine was drastically reduced). All-in-all, I'm now on all of that, plus Vitamin C, Calcium/Magnesium and finally ferrous sulfate (my iron stores were extremely depleted which is common with thyroid troubles). Also, he found that I was insulin resistant and lead me to low carbing. I now have new hair growth - - and stronger hair, absolutely NO joint pain (was nearly incapacitated before), my muscles feel better, my fatigue is improving, my skin is improving, I have more stamina, it's easier to breathe, my periods are more regular, my body temperature has improved, my mood is improved .... he's done wonders with me. I hate taking so many pills every day, even though they're all mostly vitamins/minerals, but I would never dream of missing anything and feeling like I did pre#6.

All of that being said, every person is different, especially the adrenals and hormone reactions to thyroid problems, so my protocol may not be exactly what you need, however, the vitmains and minerals I'm taking, I'd advised just about anyone to take.

moon-is the Cytozyme-AD a supplement or a perscribed medicine. You sound like you got a great doctor. I wish I was there so I could go to him/her.

I wish I could find a doctor that would help me.

Thanks.

The Cytozyme-AD is a supplement:

Cytozyme-AD

As far as I know, he puts just about everybody on it, and I've been trying to get my husband to take it. Be forewarned, though, it's real adrenals from calves gone to slaughter (I used to be vegan and that would have been important to me). However, after feeling so much better from taking it, I would never miss a dose. My MIL works with someone whose 80-something mother goes to my doctor and she was talking about how in just the first week, it made a world of difference in her mother. I was really quite content just on the Cytozyme-AD and was a little "eh" about starting the Cytomel (T3) and they forewarned me that I'd feel worse before I felt better and sure enough, I felt like I was moving through mud when I started it ... but after about three months, I am a new woman. Truly.

Go to the aboutthyroid.com and find a doc in your area. That's how I found mine. I've run into patients in his office or the neighboring pharmacy that drive around 100 miles just to see him. Finding a good doctor is worth the commute - - further, they will work with you, knowing your commute isn't easy.

To quote Nike ... just do it. Trust me, you'll thank yourself later.

Moon-thanks for the reply. I made an appointment with a doctor last night that is on the list, although not much was said about her on the list. Anyway that is a start. I am going armed with the info you gave and some other support info I need. Now I need to get my file from the doctor so I can go on Friday.

Thanks a bunch. These groups I belong to have been great.

Ooooo keep me posted! I swear, I felt so great yesterday ... as I just got up, I can't speak for today just yet, but I see my doctor on Friday and I think I might have to hug him. One never realizes what it is to fee "normal" until it is taken away! You did the right thing by making an appointment. Like I said, I went through five doctors before finding #6, and the road was long and very hard and extremely bumpy, but it was worth it in the end.

I am new and interested in info on Wilson's Thyroid Syndrome. I have made no progress in getting treatment for it but have the symptoms galore. I am seeing an endocrinologist who has NO Clue. I always test low in T3. When T3 is high or normal I lose weight. Thyroid medication does not do it. At one point thyroid was too high but T3 too low. I am interested in Drs names who are knowledgeable on this. I am interested in what has helped others. I am very frustrated with the endo...G

Check out the top-thyroid doctors list. There's a link in the FAQ.