Nothing Works! Please Help: Hi All, I am new... - Thyroid UK

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Nothing Works! Please Help

Alexa422 profile image
10 Replies

Hi All,

I am new here and am desperate for some help. I used to be over weight when I was young and finally put on compounded sustained release T3 at the age of 21 to help with low thyroid (naturopath following Wilson's protocol) I felt good for a while on this, probably around 6 years. Age 25 i started a vegan diet, then a raw vegan diet, then a fruititarian diet. I lost allllllllll the weight I ever wanted to lose and felt on top of the world. After about 2 year of this everything seemed to come crashing down. I felt horrible and bloated and started to gain weight again.

A horrible doctor (new bc I had moved) put me on synthroid which was a period I do not like to discuss as I could not even get out of bed most days, clearly I do not convert well. I gained 30 lbs in 3 months, worst times of my life.

Went back to my compounded SRT3, lost MOST of the weight, but never felt quite as good as i used to.

Moved again, next doctor put me on WP Thyroid. I had gone in bc I started have very severe brain fog. I finally was dropping alllll the weight I wanted to in order to get to my comfortable weight zone, it was great especially bc my energy was absolutely amazing! My brain fog never went away though and actually ended up getting worse. I ended up dropping wayyyy more weight than I wanted to. I got as high as 195 MG of NDT (WP) and things started going in the opposite way. I have now gained as much weight as I did on t4 alone and am depressed, fatigued, paranoid, and brain fog is so bad I no longer accept that I live in reality.

One day in my constant research I found Paul Robbins book "Recovering with T3" It seemed to match what I was going through pretty well and thought this must be for me!!! My doctor listens to me always and was willing to give it a try, he says I am the most complex patient he has had ha. I am being started on 25mcg of T3 but have not dropped my last grain of WP thyroid yet. So far I feel awful!!!! things have just gotten soooo bad I have gained more weight, allllll time high for me. I can barely get through the day I feel so depressed and terrible.

Do I up my dose? Do I go ahead and get rid of all NDT? Do I dose all at one like Dr. Lowe? My doctor is letting me lead the way with this as he is not familiar with T3 only dosing. Any help would be great as I am not sure what to do either! All I have is Pauls book and some research done by Dr. Lowe. Im so confused as to why nothing seems to help me?! I am convinced I will never be well again! Its scary.

I am a 28 year old female, 5' 6'', up to 150lbs now. Too young to suffer like this.

Any advice would be amazing I am very lost.

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Alexa422
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10 Replies
greygoose profile image
greygoose

Without seeing any blood test results, it's difficult to help you. But, I will say that because of your different diets, plus being hypo, you are probably extremely low in certain nutrients. And, unless all your nutrients are optimal, WP thyroid will not work for you. I think the first thing you should do - after having given us a few results, with ranges, is to ask your doctor to test your vit D, vit B12, folate and ferritin.

Alexa422 profile image
Alexa422 in reply to greygoose

Thank you for the reply. Yes my extreme dieting did not help at all. I know have insane food cravings all day. Food is all I think about! I over eat almost every meal and cant help it, it is mostly steamed veggies, avocado, and healthy things but still it is uncomfortable. I Supplement with vitamin D, B12, magnesium, not ferritin. I am thalassemic so i will always be deficient in iron as my body is unable to utilize it, I also will most likely have a hard time getting enough B12.

Test Results:

TSH = .01

Total T4= 4.2

FT4= .9

FT3= 2.4

Total T3 = 71

RT3= 8

Antibodies = less than 1

Peroxidase antibodies = 1

greygoose profile image
greygoose in reply to Alexa422

Sorry, but we need the ranges for those results. The numbers on their own are meaningless.

Your diet may be 'healthy' (hate that word!) as far as it goes, but there is probably a lot missing. What about carbs? You need carbs to convert. And it doesn't sound like you're getting enough fat, that you crave food like that.

Are you being treated for your thalassemia? Did you have your D and B12 tested before starting supplements? If so, what were the results? And how much are you taking of each?

Alexa422 profile image
Alexa422 in reply to greygoose

T4= 4.5 - 12.0 mcg/dl TP

FT4= .8-1.5 ng/dL TP

FT3= 2.3 - 4.2 pf/mL TP

Total T3 = 76-181 ng/dL TP

RT3= 8-25 ng/dL AMD

Yes I am not sure of the number but my doctor tested vit D, Magnesium, and B12 and stated I need to be supplementing all of them. I take 4 vitamin B vit complex a day, 1,000 Vit D, and 300mg magnesium, all based on my doctors advise.

I definately have some food issues, my carbs come from berries, nuts, seeds, the large amount of veggies I eat in a day, though they are all nonstarchy. Fat wise I eat at least a whole avocado a day, almond butter, coconutbutter, some nuts/seeds.

I rarely eat animal protein but sometimes have fish at dinner.

humanbean profile image
humanbean

Age 25 i started a vegan diet, then a raw vegan diet, then a fruititarian diet.

A fruit only diet will be very high in glucose and low in nutrients. For example, vitamin B12 only comes from animal sources. Folate is usually found in green, leafy vegetables. In fact, vegetables are far better sources of nutrients than fruit are.

Your diet will also be very low in fat (or non-existent in fat). You need fat to enable your body to absorb fat-soluble vitamins. Your brain needs fat to remain healthy - in fact it is made of at least 60% fat and cholesterol.

I'm not sure how many minerals you will get from just fruit. Iron for example? Which fruit contains iron?

I think with such a high glucose, low fat, low nutrient diet you are setting yourself up to get very early type 2 diabetes and early-onset dementia.

Alexa422 profile image
Alexa422 in reply to humanbean

I have stopped the diet now for 2 years. I only stayed on it bc I was feeling absolutely amazing, the best I have ever felt in my life! I was also lost all the weight I ever wanted to lose my whole life. I felt energetic, happy, and stable. It stopped working after a few years but nothing compares to how horrible I feel now.

humanbean profile image
humanbean in reply to Alexa422

I'm glad to hear you stopped the fruit only diet!

Can you say which dose of Levo only made you feel best?

Which dose of NDT made you feel best?

Which dose of T3 only has made you feel best?

I realise you might not have felt well on any of these, but we need to start somewhere.

Based on patient experience, T3 is roughly 3 - 4 times as potent as Levo, so 25mcg T3 is equivalent to 75mcg - 100mcg Levo.

One grain of WP Thyroid equals 65 mg total, which is composed of 38 mcg T4 and 9 mcg T3, according to this link :

stopthethyroidmadness.com/a...

If T3 is 3 times as potent as T4 then 1 grain WP is equivalent to 65mcg Levo.

If T3 is 4 times as potent as T4 then 1 grain WP is equivalent to 74mcg levo.

Some of your problems may be that in switching from one type of med to another you are decreasing or increasing your dose dramatically. Doctors have a habit of over-valuing both T3 and NDT so they may be under-dosing you.

Alexa422 profile image
Alexa422 in reply to humanbean

I used to feel good on 22.5 MCG of sustained release T3 but that was 4 years ago and had stopped working

I felt pretty good (not all symptoms were relieved) on around 146 mg of WP Thyroid but not as good once i was raised to 195mg

I felt absolutely horrrrriblllleeee on 100mcg of levo from day one at no point did I feel like anything other than death on this

I am not on 25mcg of lyothyronine (generic cytomel) and feel absolutely horrible as well.

I just do not know when life got this bad! I don't remember what is is like to enjoy life. It makes me sad.

humanbean profile image
humanbean in reply to Alexa422

If you found yourself feeling good (or not too bad) on 22.5mcg sustained release T3 or 146mg WP Thyroid, but now you don't feel so well, then perhaps something else is interfering with you feeling well.

Cortisol and nutrients being at the wrong levels are probably the two most common issues, but there are lots more things that could be a contributory factor listed on this post from another forum :

forums.phoenixrising.me/ind...

Alexa422 profile image
Alexa422 in reply to humanbean

I know forsure, based on a saliva test that my cortisol is FLAT! That is why I began taking my NDT according to the CT3M. That is also why I became interested into a T3 only treatment, it worked so well for me in the past, even though it was sustained released (but stopped working suddenly). But I just feel so bad now no matter what I try. I gain more and more weight and my brain fog is soooo sever I wouldnt even call it brain fog! I live in some what of a parallel universe completely detached from reality and it scares me so much how someone can even be alive like this. My doctors do not even know what to do with me at this point. I have a prescription for cytomel, a prescription of compounded SRt3, and a prescription for WP thyroid and they keep switching me all around. I am going crazy! I am on 2 grains of WP and 22.5 MCGs of SRT3, but its only been two days. I tried to transition to T3 only but it was sooo rough I couldn't, I wasn't showing up for work and I had to be able to get here! I feel horrible, not that I expected results any time soon. I just can't take this trail and error it is ruining my life. My stomach is just always so bloated and my food cravings are insane. I just need any kind of advice right now or help or direction. I am so scared abt how not normal I feel.

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