Temperature Syndrome

[MormorK]

Has anyone tried Wilson's t3 protocol?

It raises your daytime temp to 98.6F and hypothyroid symptoms go away. Often no further thyroid meds are needed--unless you relapse. (You take it if your day time temp runs >98F.)

[puncturedbicycle]

When you say no further meds are needed are you saying you need to take medicine once and not again? And is this the protocol which advocates using time-release t3? It does not sound plausible to me and I haven't read anything that has changed my mind but I am happy to be proved wrong.

[MormorK in reply to puncturedbicycle]

Info is at Wilsonssyndrome.com. An NP near me has had the treatment and swears by it. Wilson posits that many of us with hypo symptoms don't have a damaged thyroid but enzymes don't work as well in the tissues until body temp is optimal.

[puncturedbicycle in reply to MormorK]

So the first thing that popped into my mind is what's the basis for concluding that that fairly random temp is optimal?

That site does not inspire confidence.

[MormorK in reply to puncturedbicycle]

You look at the Dr Manual? It's been weeks since I read the stuff; I'm doing a lot of searching. I can't remember how he documented that but the explanation about enzymes I found interesting. Wilson has worked on this with 1000s of thyroid patients since the '80s. There's no double-blind studies. He calls it atherapeutic intervention that proves it selfby working as often as ot does. I would settle for a Placebo Effect that would restore me and rid me of insomnia, fatigue and much more. My Endo is disappointing in the extreme....

[MormorK in reply to puncturedbicycle]

Sorry for the tyos we're bumping over mountain road.

[puncturedbicycle in reply to MormorK]

No worries. I know what you mean about the placebo effect. And I am not judging you, I have happily gone down the road less travelled myself just to do something/anything. It's just that this doesn't make sense to me and the way it is all expressed seems to go in circles a bit. Maybe it's a matter of trying it to see if it works for you - ?

My partner takes a dim view of what he calls mumbo jumbo and he found his terrible eczema virtually cured by nothing more than massage, acupuncture and some minor dietary changes. We don't know what worked, but something did.

Sorry to put on the broken record but I assume you've gone down the road of optimising your thyroid treatment - ? Or is it that you can't get a diagnosis?

I am in a similar state myself so I sympathise, for what it's worth.

[MormorK in reply to puncturedbicycle]

I have been on thyroid meds 8 yrs mostly NDT. My tsh is now down to .0004 so Endo says I'm overmedicated and must cut meds. But when my t3 is low I feel pretty awful so I ased about taking only t3 until my tsh number is up but she says No.

[greygoose in reply to MormorK]

Ummm... how is that supposed to work? It's the T3 that is suppressing your TSH, not the T4. So changing from T4 + T3 to T3 only is not going to help raise your TSH. And it doesn't matter how low your TSH is, anyway.

[shaws Administrator]

This is a link which may interest you. Go to the date February 4, 2008 to read another scientist's view:

web.archive.org/web/2010103...

[MormorK in reply to shaws]

I read that and found it interesting. I'll look for the book....Have tou tried Lowe's protocol--hi t3 only?

[shaws Administrator in reply to MormorK]

Yes, I followed Dr L faithfully and I am now well. Levothyroxine didn't work for me and it's only thanks to Thyroiduk.org.uk before this forum began who led me onto a good path and I had to try a few optional ways to eventually find that T3 was best for me.

Your dose may be too high and the usual way when beginning T3 and if you've already been taking levothyroxine (or any others) is to switch from one to another on an equivalent dose. i.e. 25mcg T3 is around 100mcg of T4 (levo). after about 1 week you increase by a small dose taking note of your pulse/temp and so on until you are relieved of symptoms. This may be helpful:-

web.archive.org/web/2010112...

p.s. Dr Lowe died and his website is archived and it is difficult to find info.

[MormorK in reply to shaws]

The Endo prescribed only 5 mcg Cytomel, 2x daily. Did you split the dose or take all at once? (I noted Dr L doesnt think dose needs to be split.)

[shaws Administrator in reply to MormorK]

I have never split doses of whatever I've been taking, i.e. T4/T3, NDT, or T3.

Dr Lowe took a blood test only for the initital appointment and then concentrated on the patients' clinical symptoms and to relieve them.

Before blood tests were introduced along with levothyroxine, we were diagnosed according to clinical symptoms and doctors also took other things into consideration, i.e. temp and pulse, reflexes etc.

Dr Lowe said that T3's job, once into our bloodstream is to saturate all of our receptor cells and then its work begins, i.e. sends out 'waves' which last between one to three days.

I have also missed a day's dose with no ill-effects. My one daily dose of just under 50mcg lasts and doesn't wear off.

I have also read that if you take T4/T3 combo it should be in a 3:1 ratio.

[MormorK in reply to shaws]

What is the ratio in NDT? If it were you would you continue ndt and slowly add t3, or go only to t3?

[StarFlower2 in reply to MormorK]

I initially followed Dr L's protocol and found one large dose did not work for me, my adrenals could not cope. I think it's best to check cortisol levels first.

[MormorK in reply to StarFlower2]

I just got back cortisol result at 10.5 within the broad normal range. Maybe I should take adrenal support whilst slowly building up from 10mcg t3?

[StarFlower2 in reply to MormorK]

I'm not sure which cortisol test you did but I can recommend Genova diagnostics which is a saliva test done at different times throughout the day. Low temps can relate to hypothyroidism but inconsistent temps might mean your adrenals are struggling. If so a good raw adrenal cortex is worth a try but only if you do have an adrenal problem.

[MormorK in reply to StarFlower2]

I should do that Do you know the approximate cost? I need a test that allows a sample at 2-3:00am when I am wide awake for hours.

[StarFlower2 in reply to MormorK]

If cortisol is too low adrenaline is used to produce glucose by a different means and the adrenalin can cause early waking as in your case.

I think I paid about £75 for the test it' called Adrenal Stress Profile.

[greygoose]

Have you tried it?

[MormorK in reply to greygoose]

No. but I am tempted. I'd like to find others who have. I havent felt well for much of 30 years and I'm determined to find a solution

[greygoose in reply to MormorK]

But have you had full thyroid tests :

TSH

FT4

FT3

TPOab

TgAB

vit D

vit B12

folate

ferritin?

If so, have you got the results?

[MormorK in reply to greygoose]

I've had most of them. Right now my iron is low, so I am supplementing for that. My tsh has been as low as .0004 so the Endo I saw last week says I must drop from 90 mg NDT to 45. I feel this will drop my t3 too low; right now it is above the median. I am waiting for results on Cortisol. It won't surprise me if I'm low.

[MormorK in reply to MormorK]

Oh I know. But the MDs who have treated me over past decades have been so uninformed about thyroid and metabolic issues I am ready for something that reportedly works--rather than is sanctioned but doesn't "work."

[greygoose in reply to MormorK]

But why do you think your low temperatures are causing your thyroid problem, and not your low thyroid causing your low temperatures? If you haven't even had your antibodies tested, how do you know you don't have Hashi's causing everything?

I agree your endo is a nutter, trying to dose NDT by the TSH! And you're right that your FT3 will go too low if you reduce your NDT. But... I still don't understand.

So, if you do try this protocol, you will be self-treating, is that correct? In that case, why not just self-treat with NDT and bring your FT3 up to a decent level, and then see how you feel? I don't think anyone could survive on 45 mg of NDT!

[MormorK in reply to greygoose]

GG, I do think low thyroid has slowed my metabolismand the lowered basal temp. is a sign. If I use t3 to speed my metabolismI can tell if it's working by the rise in temp. Or so they say. Neither GP nor Endo will order tests on B12, etc. so I suppose I must pay to find out where they stand. Ditto for saliva test of cortisol. I have cut back most exercise and it is now a month since my last energy crash but insomnia 2-6:00am continues to be a problem, so something is amiss.

[greygoose in reply to MormorK]

I think you're getting a little confused. In the beginning, you said it was low temps causing your hypo problem. Now you say the opposite. Right second time.

I don't know about a rise in temps proving your T3 is working, I've never done it. But that's what most people say. But, I've also heard that for some people, the temperature never rises.

The NHS doesn't do saliva testing for anything. But your doctor should test your B12, that's pretty basic care. Sounds as if he's being deliberately obstructive!

[MormorK in reply to greygoose]

GG, I never thot or said that. You inverted my meaningor are thinking of someone else. Wouldn'tit be grand if raising one's temp would solve all hypo ills...maybe even pay the rent?😁

[greygoose in reply to MormorK]

But that is exactly what you are implying in your original post, by sayong that raising your temperature will get rid of all hypo symptoms, and you might not need to take thyroid hormone replacement once your temperature israised.

[Clutter]

MomorK,

Wilson's syndrome is not a recognised medical condition.

healthunlocked.com/search/w...

[silverfox7]

I'm more concerned that the endo hadn't a clue! Taking T3 in any form the only valid result is FT3. First thing my endo told me is that expect your TSH to be zero and FT4 can drop in range if my FR3 is optimal. To get to this stage on Levo and not converting well I addressed vitamins and got it much improved then went over to NDT and despite two operations and a course of radiotherapy this last year I'm feeling pretty good!

[MormorK in reply to silverfox7]

Are you saying that vitamins (which?) helped you raise your ft3 to optimal levels whilst on Levo?

[silverfox7 in reply to MormorK]

Yes! I have been taking some recommended ones for years, zinc and selenium but then added in D3. Was very low as was with folate and B12. Then a good B complex to balance the B's and magnesium to help sleep. It is recommend if conversion problem to test B12, D and filter as they help the process and it worked for me. I also, around the same time did a food intolerance test and cut out the foods I was intolerant to-I had loads and that was a great help as well and I lostcgalf a stone without trying and. Enter still had a better shape! Didn't happen over night but several months.

[StarFlower2]

I am on T3 only protocol. I will continue to increase T3 meds until I reach 98.6 at which time I should be out of my hypo state. I'm currently on 75mcg Cytomel daily split into 4 doses. My temps are averaging 98.2. I take my temps 3 times a day and divide by 3 to get my average. If they remain consistent over a period of 5 days I will increase a small amount of t3. I will continue doung this until Temps are at 98.6 at which time my RT3 should have cleared. It can take up to 12 weeks to reach clearance. However, I have adrenal issues so my T3 increase has been very slow. It's taken me 5 months to get to this point.

[MormorK in reply to StarFlower2]

When you get to 98.6 do you expect to cut back on your Cytomel?

It is encouraging to hear of your progress. I would like to know how you feel at 98.6.

Do you do any testing to see where your T3 is relative to the normal range?

How do you address Adrenal Issues?

[StarFlower2 in reply to MormorK]

MormorK.. I am following advice from a US based forum/group much like this one. I believe I should have full RT3 clearance when my temps are consistently at 98.6. They are currently around 98.2 and although I'm so so much better I know I still have a little way to go. At my worst time with hypo symptoms my temps were never higher than 96.

I'm working on getting consistent temps for 7 day periods before I increase Cytomel. Upping it will help raise my temps but I do need a 7 day run of consistent temps before I can increase. Unfortunately, i get a reoccurring drop to around 97.6 each week which is possibly a sign my adrenals are struggling.

I'm currently on 75mcg of Cytomel daily split into 4 doses. I started on 6.25mcg daily. I was a mess with really bad hypo symptoms and adrenal fatigue. Some people take hydrocortisone to heal adrenals but my potassium levels are too low to take it so it's been a long slow process for me. I take Adrenavive iii to support my adrenals. I also stress dose with hydrocortisone cream.

When I get my temps to 98.6 I will take guidance and hopefully start to reduce Cytomel slowly. At this point my RT3 should have cleared. This will be another game of trial and error. I'm not sure which thyroid tests I will need or when I will need to have them done.

[MormorK in reply to StarFlower2]

Have your hypo symptoms included fluid retention and puffy eyes? And can't lose weight? If so, has the improvedtemperature brought an improvement in those symptoms?

[StarFlower2 in reply to MormorK]

Yes, lots of fluid retention with puffy eyes, face and fingers! My hair was falling out and I put on over a stone in weight. I have lost 10Lbs in the last 2 months. It could be my raise in temprature but I'm generally feeling much better too.

[MormorK in reply to StarFlower2]

That's great. May I ask which US forum has helped with the t3 only treatment?

[MormorK]

My daytime temps averaged 97.4 when I did them for 5 days--and thats on 90 ndt which gave me 'hot head' flashes and energy crashes. Can you buy t3 without a Rx? Did you wean off t4 or simply stop it at once?

Are you able to sleep well and lose any weight?

[humanbean in reply to MormorK]

Yes, you can buy T3 without a prescription. If you are interested, create a post and ask people if they would send you links to reliable sources via private message. It is against forum rules to discuss sources on the public forum.

[StarFlower2 in reply to MormorK]

I take on waking then 3 hours after and 3 hours after that. So if I was at 8am that is my first reading, second at 11am and third at 2pm. I record each reading and divide by 3 to get my average and I do that every day. Body temps vary throughout the day so this gives a truer reading which I think is important whilst I'm taking T3 only meds.