Wilson's Syndrome will cure me?

[RobinPaulWilliams]

Hi there. I thought I'd write something controversial, as my post about Advanced Logical Methods had little response. I don't know whether Dr Wilson's theories and protocol have helped anyone on this forum. So that's what I'd like to ask - Has anyone got experience of using this protocol? would you be willing to share your experiences with me? Maybe they have all made a full recovery and unsubscribed from ThyroidUK???

I was planning to start an even more uncertified metaboic reset protocol this week (Steve Richfield's Advanced Logical Methods), but have come down with a bout of Shingles, so thought the better of it, until I am over the outbreak. I have donated to Mr Richfield's cause and written to him personally, but received no reply as ofyet. I'm wondering whether he is still around... ...

I'd love to hear from anyone who has worked with either Wilson's Syndrome and RT3 production or Advanced Logical Methods and the reset protocol... Please get in touch!

Robin

[Naomi8]

Have you tried putting Wilson's Syndrome in the search box?You could PM anyone you think could give you any more info.Have you tried Ray Peat's forum?

[RobinPaulWilliams in reply to Naomi8]

Thanks Naomi. I'll try these...

[RobinPaulWilliams in reply to RobinPaulWilliams]

I already wrote a week ago to the last forum post registering an interest in Wilson's Syndrome dated a year ago, but no reply yet...

[RobinPaulWilliams in reply to Naomi8]

Hi Naomi

thanks again for your advice on how to find specific info!

I joined the Ray Peat forum and posted about Advanced Logical Methods. I have been sent a link to a long discussion which is most revealing (and scary). I guess that forum might better than this one for that line of exploration...

I'll write a post on this forum once I have tried out the metabolic reset protocol... I am so determined not to pass another Winter constantly feeling cold...

[Naomi8 in reply to RobinPaulWilliams]

Do not know if this will be of any interest as part of your research,but take a look at the "Phoenix Rising Forum"

[RobinPaulWilliams in reply to Naomi8]

Okay, thanks! All avenues of research are worth exploring...

[RobinPaulWilliams in reply to RobinPaulWilliams]

the Ray Peat forum revealed a fascinating conversation between people actually going through the Metabolic Reset, in diary form - Absolutely fascinating! I joined Phoenix Rising yesterday... still awaiting approval...

Thanks so much for the scoops!

Robin

[BadHare]

I had to look Wilson’s syndrome up, after seeing your earlier posts. What went through my mind is how do you know it’s that, rather than hypothyroidism, until you stop taking T3?

I live in fear of shingles after contracting chicken pox at 45. I’m hoping my newly raised temperature will protect me. Get well soon!

[RobinPaulWilliams in reply to BadHare]

How did you raise your temperature? With T3?

My labs have returned to mid-point ranges, but I am still not feeling much better.

The medics I have seen all say that my thyroid is absolutely fine (because they only look at these blasted blood tests and not my symptoms!) I have therefore not been 'prescribed' ANY medication as yet.

I managed to catch the Shingles early on this outbreak, so started promptly appling Propolis and the infection seems to be rapidly taking its course... to the painful stage! As they say here in Italia, "Pacienza!"

[BadHare]

I initially took NDT, then added T3. The latter only is fine in the summer.

I had to diagnose myself with secondary hypothyroidism after finding out I have a pituitary adenoma. I’ve had symptoms for 40 years. The endocrinologists seem not to understand the blood results need different interpretation. They seem pretty clueless about ordinary hypothyroidism & Hashimotos.

My temperature rarely went above 35.1’celcius. Now it doesn’t drop below 36. It’s so nice to be able to produce body heat!

Mel

[RobinPaulWilliams in reply to BadHare]

Aah! Interesting! Your temperature rises by taking NDT. Does the temperature rise also alleviate other symptoms for you? You say that T3 only works in Summer - I wonder why that should be?

I guess I should also look deeper into the pituitary, as it has popped up a few times already in my chats on the forum... I wonder whether there is any way of getting the pituitary to function properly once it is damaged? I know it is a very small gland under the brain...

[BadHare]

My temperature is closer to normal on both, but the skin conditions that I've had for years cleared up on NDT only, then crept back after taking T3 only last summer & autumn, once the weather became cooler. It might not be seasonally related, but after 6 months on just NDT from last spring, my lips started to feel flaky again. Instead of increasing T3, a month ago, I've added half a grain of NDT before more uncomfortable skin issues returned. If it's not seasonal temperature, I assume my skin just needs the other hormones my thyroid doesn't produce.

I met several people at my local Pituitary Foundation group that had both idiopathic & trauma related issues. Perhaps ask to have your prolactin levels tested if you think your symptoms are related to this. Depending on what I've read, pituitary adenomas are present in 25% of cadaver autopsies, so the tumours aren't uncommon. Surgery isn't performed unless the tumour reaches macro size, above 10mm. If this happens, there's usually other symptoms, though these vary depending on whethar the tumour is on the anterior, posterior, or stalk. I'm unsure whether surgery returns the body to a normal state, but like that for most ailments, the medication has side effects. My tumour was found due to extremely high prolactin levels, rather than eyesight issues, at three times the levels that indicate a tumour as opposed to natural elevation. I read up a lot prior to having my first MRI, so knew to expect a positive diagnosis. It's a pity the endocrinologists I've seen have been wholly ignorant & useless with the hypothyroid symptoms!

Here's a link to the PF: pituitary.org.uk/media/3113...

[RobinPaulWilliams in reply to BadHare]

Sorry for my delay in replying - I could swear that I replied a few days ago! - perhaps this condition is affecting my memory too...

I've read the foundation's excellent handbook and also looked into another about Prolactin.I subsequently looked back at some of the blood tests one of my endos ordered back in July and it seems that he might have been looking down this road... (I wish he had explained this to me at the time; rather than leaving me to work it out for myself...). For the timebeing, I think he has looked down the most likely pituitary avenues, but think that more research would be needed to rule it out completely. For the timebeing I am going to focus on the Metabolic Reset route, as I don't want to blow my mind with such a wide area of research. I will definitely keep the possibly Pituitary link in the back of my mind from now on... and go back to explore deeper in the future, if I run out of options in my current line of research...

Thanks very much for sharing your Pituitary experience with me and broadening my horizons!

[BadHare in reply to RobinPaulWilliams]

No need to apologise!

Its frustrating that doctors don't bother to explain things adequately. I'm sure it's because they can't or don't know enough themselves. Opticians seem better at picking up symptoms, a& seem to be more up to date with their training than endocrinologists. At least we have this site as a helpful resource.

Good luck, & I hope you find a way to get well soon!