Need Help - NDT Making Me Worse (Very Confused)

Peater Pan

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I totally agree. My thyroid function seemed fine "on paper" but because of ongoing fatigue and some evidence of myxedema my naturopath suggested a low dose of NDT. At first things were ok but after a month I started to tank so I thought the answer was to progressively raise the dose. That was pretty much a disaster. By the end I thought I was dying.
Have you ever heard of a product called Vital Adapt? I know that Ray is not a fan of supplements so suggesting it here might be sacrilege but that stuff is the number one thing that has turned my condition around. It's a tincture that is comprised of adaptogenic herbs and reishi mushroom, licorice... Their herbs support adrenal and thyroid. I'm super sensitive to everything, even b vitamins, but this I can take and it's very effective. I think the brand is Natura? Anyway, it comes in pill and tincture form. I don't believe my doctor would recommend it unless it was a superior product. I have used it off an on for about 3 years. I think you can still find it on Amazon and it gets high reviews. Personally, it's the only thing that worked for me. The NDT was a good experiment though, I'd would always wonder if I hadn't tried it.
Your experience sounds like what I am going through. Increasing T4 and T3 and feeling worse and worse. I have basically no thyroid (Hashi's) and used to do well on WP (1 grain x 3/day) before the product went south. I've been in a health spiral since mid-2019. Chronic URI since 12/2019. I actually think I'll be dead in less than a year given how I feel. Looking into adrenal cortex and support…
 

Peater Pan

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@Peater Pan Have you ever had grapefruit juice? It prevents the breakdown of cortisol. I can vouch for it's usefulness, which surprised me, as my cortisol is barely high enough to keep me functioning. That and salt for aldosterone are cheap ways to find out. It's also convenient because you can just stop drinking the juice until the point that it's needed again.
Interesting. I take tons of salt but have avoiding grapefruit as it's estrogenic, no? Pittman & Davis ruby in cans is delicious (remember from when I was a kid).
 

Peater Pan

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My doctor suggested something which I think is similar. I'm going to start if after I finish my adrenal saliva test today. It's called Thorne Phytosine. Hope it helps.
My doc mentioned Thorne's Adrenal Cortex
 

Peater Pan

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In my experience, what I thought was low thyroid was/is adrenal fatigue. One of the ways that manifested for me was low blood sugar in the morning. As I was waking and becoming aware of my body I would notice an internal shakiness that was discomforting. My waking temps were also low and I never felt very well until I had my coffee- sugar-cream-gelatin combo. Then I started to feel human again. Interestingly, neither my waking temp nor daily temps changed with NDT. I could not get it to budge.
Now that I am off thyroid and have stabilized my cortisol metabolism I've noticed better temps. Probably because blood sugar levels are better balanced. Eating enough food/calories in the morning really helps to warm the body/ raise the metabolism and support all systems. It's amazing what just eating enough high quality calories can do, even if it feels like you're eating too much at times. Maybe try to have a snack before bed and eat something upon waking and see if things improve. It seems to help me.
Good advice except I have basically zero thyroid tissue so I'll always have to take thyroid. A Peaty meal, with plenty of salt and sugars and 25-30 grams protein, within an hour of waking is important for metabolism.
 

Nicole W.

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Good advice except I have basically zero thyroid tissue so I'll always have to take thyroid. A Peaty meal, with plenty of salt and sugars and 25-30 grams protein, within an hour of waking is important for metabolism.
Have you tried a different ratio of T3/T4? Like TyroMix? My body responded to that much better than the NDT.
 

johnsmith

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Alright OP, I will tell you what is really going on.

Thoroughly read this article:
http://www.thyroidscience.com/hypotheses/warmingham.2010/warmingham.7.18.10.pdf

You are the "over-compensation" pattern. Taking thyroid hormones lowers your TSH (and hence your own thyroid gland's production) in a non-linear fashion, by a greater amount than what you supplement, leaving you with less hormones than if you took nothing at all.

My advice would be to use separate T4/T3 (synthetic), and vary the ratio to see if you can get around this.
The other side of the problem is that NDT are thyroglobulin-bound hormones, the body has to release them for them to be active. This works well for some people and fails completely for others - wouldn't be the first time I've heard people describe being on NDT akin to taking nothing at all. Synthetic hormones are bound to sodium and the bound is easily broken in the stomach. Once they are taken up in the bloodstream they are immediately active.

I've never heard of what you've mentioned above and that link no longer works. I supplement synthetic thyroid (t3 and t4, 1:3 ratio) and my TSH is currently 0.2. I also have low energy and need a nap every day in the afternoon to refresh myself. Is there a chance that I'm "over-compensating" and taking too much thyroid? My doctor thinks that I might be. Ray often says low TSH is good but I've wondered if there's a limit to how low is good.

Interesting side note: before I started supplementing thyroid 5 years ago, my TSH was 0.01 and my free T3 was high, then I began supplementing thyroid and my TSH went up and T3 went down. I figured it was due to the insane amount of stress that my body was running on instead, prior to supplementing thyroid.
 
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Peater Pan

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Have you tried a different ratio of T3/T4? Like TyroMix? My body responded to that much better than the NDT.
Not TyroMix specifically but switched to synthetics, since all Big Pharma NDT is trash now, and have been moving closer and closer to that 2:1 ratio. Somethings missing. I think it's maybe adrenal support. I feel like I'm dying, seriously.
 

Nicole W.

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Not TyroMix specifically but switched to synthetics, since all Big Pharma NDT is trash now, and have been moving closer and closer to that 2:1 ratio. Somethings missing. I think it's maybe adrenal support. I feel like I'm dying, seriously.
I believe you, but please hang in there. I can only imagine how terrible you feel. It’s so scary when nothing you’ve tried works. I know it can get extremely depressing. Please don’t give up hope, the answers are out there. You’ll figure this out. You will, and I look forward to hearing all about it.

I don’t know your whole back story but...

Have you tried the Adrenal Adapt I suggested in 2017? I still stand by that suggestion. It is gentle enough for a person who is very ill but it’s effects build over time. There is a stronger one by the same company called Power Adapt as well. They are excellent for Adrenal fatigue. I would call the company and make sure that it’s okay to use with thyroid though. There’s ashwaganda in it so that could be problematic. Not sure.

Have you tried a naturopath? I know this is a controversial suggestion here at RPF but sometimes Naturopathic advice can help. Have you tried to work with someone like that? They help A LOT of people with Adrenal fatigue and thyroid problems. Facts are facts. It’s just what they do. They know some things that aren’t necessarily discussed here. My Naturopath’s advice is a big part of the reason I’m healthy today and I would never discount her just because she doesn’t align completely with Ray Peat’s ideas. The goal is to get well no matter how you do it, don’t get stuck in just one modality. When getting well, be loyal to no one.

If you have the resources, acupuncture can also offer some benefits. Unblocking energy flow benefits everyone especially those with energy deficits.

I don’t know what you’re capable of doing or not doing at this point in your illness. When I was sick I’d get a second wind around 3-4. I would make dinner for my family and then collapse again. Finally, my doc said: you know, it’s okay to rest, all day or all day for many many days until your body can summon the strength to heal. So I stopped making dinner for a while.

Are you resting? Or just pushing through?
 
OP
S

Steve

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I am in a similar situation. I take enough synthetic T4/T3 combo to bring my TSH to 0.01 or something like that and it does not seem to do anything physically. My Free T3 and Free T4 are exactly where they should be. I can take one T3 pill after another and nothing happens. Pulse, temp, energy all stay low and don't budge. I felt worse 1 year ago as far as lightheadedness and fatigue, extreme at times so maybe something is getting better. I finally resolved to just live as healthy as I can and what happens, happens. Got tired of chasing cures. So I try to eat healthy, exercise, control stress, get plenty of rest. Yesterday was horrible because social anxiety situations wipe me out.

So right now I am in the process of stopping my thyroid to see what happens to my body and my blood tests.
Then I may start it again although it would be nice if things just started working normally.
I was taking 137 T4, and 5 T3, although I tried higher T4 and much higher T3, different combinations.
With my lowering the past couple months I'm down to 68.5 T4, 5 T3. I didn't think my meds did anything, but I do feel much colder at times now that I'm lowering.

So I've been fighting this for years, and all I can tell you that helped me is to stop chasing the cure and dwelling on it. Instead dwell on doing most things right and let the body do it's thing. What happens, happens. Obviously you are stressed right now, and I guarantee that has a bad effect. Stress, esp social anxiety, destroys me. Eat healthy, control stress, exercise, get outside every single day for a walk, get plenty of sleep. Pay attention to what is affecting you. I can feel myself getting frazzled and fatigued from watching a really stressful movie, or playing a stressful video game, so you have to pay attn, and let your body stay relaxed so it can heal.

I can definitely relate to feeling like you are going to die. I'm better now than previous years, but often it would feel like my body was just going to stop working because things felt so slow and my energy level was so incredibly low. I still get that from time to time, but not as often lately.
 

Nicole W.

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Not TyroMix specifically but switched to synthetics, since all Big Pharma NDT is trash now, and have been moving closer and closer to that 2:1 ratio. Somethings missing. I think it's maybe adrenal support. I feel like I'm dying, seriously.
I forgot to ask if you have tried Stinging Nettle? In herbalism, it’s a go-to for Adrenal Fatigue. It’s very nutritious, you can consume it as a tea or infusion. I drank Nettle Tea everyday and I found it helped a lot when I was so exhausted. I still drink it every day and do the infusion intermittently. It’s full of vitamins and minerals. Just a thought....
 

Peater Pan

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I believe you, but please hang in there. I can only imagine how terrible you feel. It’s so scary when nothing you’ve tried works. I know it can get extremely depressing. Please don’t give up hope, the answers are out there. You’ll figure this out. You will, and I look forward to hearing all about it.

I don’t know your whole back story but...

Have you tried the Adrenal Adapt I suggested in 2017? I still stand by that suggestion. It is gentle enough for a person who is very ill but it’s effects build over time. There is a stronger one by the same company called Power Adapt as well. They are excellent for Adrenal fatigue. I would call the company and make sure that it’s okay to use with thyroid though. There’s ashwaganda in it so that could be problematic. Not sure.

Have you tried a naturopath? I know this is a controversial suggestion here at RPF but sometimes Naturopathic advice can help. Have you tried to work with someone like that? They help A LOT of people with Adrenal fatigue and thyroid problems. Facts are facts. It’s just what they do. They know some things that aren’t necessarily discussed here. My Naturopath’s advice is a big part of the reason I’m healthy today and I would never discount her just because she doesn’t align completely with Ray Peat’s ideas. The goal is to get well no matter how you do it, don’t get stuck in just one modality. When getting well, be loyal to no one.

If you have the resources, acupuncture can also offer some benefits. Unblocking energy flow benefits everyone especially those with energy deficits.

I don’t know what you’re capable of doing or not doing at this point in your illness. When I was sick I’d get a second wind around 3-4. I would make dinner for my family and then collapse again. Finally, my doc said: you know, it’s okay to rest, all day or all day for many many days until your body can summon the strength to heal. So I stopped making dinner for a while.

Are you resting? Or just pushing through?
Thank you. I have the Vital Adapt and Thorne Adrenal Cortex in my cart. I think Ashwagandha is okay for Hashi's/Thyroid. I've tried Nettle's in the past but not for current situation. It's meant to be good for allergies which have gotten a lot worse lately. I'm taking 25 mg diphenhydramine every night (thinking about cypro). I have some Tulsi teas I need to make more often. Thanks for the encouragement. I have some time off work and plan to rest A LOT. I'm eating well and have cut out all supps except thyroid for a week (or two). Acupuncture has been helpful in the past for ortho stuff. I'd love to find a good ND. Will search for one locally.
 

Peater Pan

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I am in a similar situation. I take enough synthetic T4/T3 combo to bring my TSH to 0.01 or something like that and it does not seem to do anything physically. My Free T3 and Free T4 are exactly where they should be. I can take one T3 pill after another and nothing happens. Pulse, temp, energy all stay low and don't budge. I felt worse 1 year ago as far as lightheadedness and fatigue, extreme at times so maybe something is getting better. I finally resolved to just live as healthy as I can and what happens, happens. Got tired of chasing cures. So I try to eat healthy, exercise, control stress, get plenty of rest. Yesterday was horrible because social anxiety situations wipe me out.

So right now I am in the process of stopping my thyroid to see what happens to my body and my blood tests.
Then I may start it again although it would be nice if things just started working normally.
I was taking 137 T4, and 5 T3, although I tried higher T4 and much higher T3, different combinations.
With my lowering the past couple months I'm down to 68.5 T4, 5 T3. I didn't think my meds did anything, but I do feel much colder at times now that I'm lowering.

So I've been fighting this for years, and all I can tell you that helped me is to stop chasing the cure and dwelling on it. Instead dwell on doing most things right and let the body do it's thing. What happens, happens. Obviously you are stressed right now, and I guarantee that has a bad effect. Stress, esp social anxiety, destroys me. Eat healthy, control stress, exercise, get outside every single day for a walk, get plenty of sleep. Pay attention to what is affecting you. I can feel myself getting frazzled and fatigued from watching a really stressful movie, or playing a stressful video game, so you have to pay attn, and let your body stay relaxed so it can heal.

I can definitely relate to feeling like you are going to die. I'm better now than previous years, but often it would feel like my body was just going to stop working because things felt so slow and my energy level was so incredibly low. I still get that from time to time, but not as often lately.
I can't stop thyroid because I have like no thyroid tissue left due to Hashi's. My TSH was 150! when diagnosed although I was asymptomatic and skinny probably via chronic adaptation to low metabolism (vegan, raw, yoga, canna…). I recall Peat mention that the liver will produce enzymes to deactivate T3 (to what I'm not sure) if there is too much, too often. I think he might be right but then there's a school of thought around thyroid resistance many of which use T3 only; some at high doses (>100 mcg). I have Robinson's Thyroid Patient Manual and Recovering w/T3. I can't get my temps past 98 most days. Waking is low 97s. I was a few months back and can with larger T3 doses but it won't stay there. I'm considering T3 only or maybe even T4 only (where I started), though I don't think I'll be able to fix my metabolism with only T4. Stress has been a big factor over the past 1.5 years. I'm taking measures to manage it. Only now do I understand how important it is and you have to pay attention and intervene! Thank you.
 
OP
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Steve

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I should get an ultrasound or something to see if still have thyroid tissue or to see if it looks normal. I started off with Grave's Disease I guess........hyper and had the TSI antibodies. Then things reversed and I've been hypo ever since. I also wonder about the thyroid resistance. Once I stop and see what happens if I have to start again I was planning on upping it and upping it and upping it until my temp & pulse go into a normal range. Not sure if that's a good idea, but nothing else has worked over the years. I'm also low 97's when I wake. I can get to 98.6 in the afternoon, but I haven't measured lately since backing way off my meds. Stress is a huge factor in how I feel, so yeah you definitely want to manage that.
 

Peater Pan

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I should get an ultrasound or something to see if still have thyroid tissue or to see if it looks normal. I started off with Grave's Disease I guess........hyper and had the TSI antibodies. Then things reversed and I've been hypo ever since. I also wonder about the thyroid resistance. Once I stop and see what happens if I have to start again I was planning on upping it and upping it and upping it until my temp & pulse go into a normal range. Not sure if that's a good idea, but nothing else has worked over the years. I'm also low 97's when I wake. I can get to 98.6 in the afternoon, but I haven't measured lately since backing way off my meds. Stress is a huge factor in how I feel, so yeah you definitely want to manage that.
My doc wants to do another scan to rule out malignancy but my 1st scan year's ago showed little tissue left. I think Peat says wait at least two weeks between T4 dose increases. I think maybe a little longer is good. I think thyroid labs are junk and temp, pulse, BP and symptoms are better diagnostics. Careful stopping cold turkey. I get raging hypo within seven days, like myxedema coma train a comin' bad.
 
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Steve

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I've been dropping the dose every 2-3 weeks. Funny you say be careful because today I had what I think was vertigo for the first time ever. Things spinning rapidly, hot, nauseous. Freaked me out......not sure if that's from lowering my thyroid or something else. Fun stuff! Need to go visit the forest tomorrow for some nature medicine.
 

Peater Pan

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I've been dropping the dose every 2-3 weeks. Funny you say be careful because today I had what I think was vertigo for the first time ever. Things spinning rapidly, hot, nauseous. Freaked me out......not sure if that's from lowering my thyroid or something else. Fun stuff! Need to go visit the forest tomorrow for some nature medicine.
I'm intimately familiar with myxedema over the last 18 months. It's hell. I need a lethal dose of nature medicine.
 

LuMonty

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Interesting. I take tons of salt but have avoiding grapefruit as it's estrogenic, no? Pittman & Davis ruby in cans is delicious (remember from when I was a kid).
It probably is. Thyroid and cortisol work together though so it's tricky in a vacuum. It looks like you're going to try adrenal cortex, did you end up buying it? I'd be interested to see how that goes; in my case I'm starting on hydrocortisone soon. I chose to try grapefruit juice in the meantime because it was something I could get from the store for cheap. It makes for a more convenient recommendation for the same reason.
 

sweetpeat

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@Peater Pan Have you ever had grapefruit juice? It prevents the breakdown of cortisol. I can vouch for it's usefulness, which surprised me, as my cortisol is barely high enough to keep me functioning. That and salt for aldosterone are cheap ways to find out. It's also convenient because you can just stop drinking the juice until the point that it's needed again.
How much grapefruit juice do you drink to feel the effects?
 

Peater Pan

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It probably is. Thyroid and cortisol work together though so it's tricky in a vacuum. It looks like you're going to try adrenal cortex, did you end up buying it? I'd be interested to see how that goes; in my case I'm starting on hydrocortisone soon. I chose to try grapefruit juice in the meantime because it was something I could get from the store for cheap. It makes for a more convenient recommendation for the same reason.
I'm strongly considering Adrenal Cortex and Vital Adapt.
 

LuMonty

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How much grapefruit juice do you drink to feel the effects?
At first only a few ounces bc of how low my cortisol is. I should clarify for everyone that mine is very lose to zero. Now I just sip on it throughout the day sometimes mixed into other drink which is around 16-20 ounces (about 8am-4pm for 16 oz, the last four around 4-6pm. That's enough for me to function and do desk work etc but still not much physical activity.

When I had cinnamon at Thanksgiving i had a bad time with a cortisol drop but a quick drink of a few ounces got me back to normal. So I'd start slow bc you an always drink more if you do try it.

@Peater Pan adrenal cortex would probably work better than what I'm recommending if I had to make guess. The grapefruit would give you an indicator of how useful it would be, or could be tried in he meantime. So whichever decision you make I hope my input is still helpful.
 

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