Need Help - NDT Making Me Worse (Very Confused)

OP
S

Steve

Member
Joined
Nov 9, 2016
Messages
444
I just finished an experimental course of NDT that lasted 4 months. By the end of this period I felt terrible, so fatigued I could barely function. I thought I had developed CFS.

My naturopath suggested testing adrenals with a DUTCH panel test. Interestingly, the results indicated that elevated thyroid levels caused my body to metabolize cortisol at a faster rate which did not leave enough for my body to use. Once I stopped the NDT and started supporting my adrenals I felt immensely better. If your adrenals aren't working optimally you'll have trouble finding success with NDT in my opinion.
I was just reading about this yesterday.......how thyroid replacement can cause cortisol to drop too low. It was in an interview between Mercola & John Lowe (at least I think that's where I read it). I'm doing an adrenal cortisol saliva test today, so hopefully that will give me a clue when I get the results back.
 
OP
S

Steve

Member
Joined
Nov 9, 2016
Messages
444
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.
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.
 
OP
S

Steve

Member
Joined
Nov 9, 2016
Messages
444
My temps seem to be getting better, but not my "waking" temp.
I'm sure that means something, but I'm not sure what.
What would be messed up when waking that wears off later in the day?
 

Nicole W.

Member
Joined
Nov 28, 2016
Messages
583
My temps seem to be getting better, but not my "waking" temp.
I'm sure that means something, but I'm not sure what.
What would be messed up when waking that wears off later in the day?
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.
 
OP
S

Steve

Member
Joined
Nov 9, 2016
Messages
444
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.
I'm waiting for the results from my saliva adrenal test. Morning cortisol was pretty low on my last blood test. So there's probably a problem there.
Eating definitely warms me up. I forgot, but now that you mention it, I was going to put some food by my bed & eat in the middle of the night to see what that does.
I always wake up at 2-3 am anyway, so might as well eat.
How did you stabilize your cortisol metabolism?
 

Nicole W.

Member
Joined
Nov 28, 2016
Messages
583
I'm waiting for the results from my saliva adrenal test. Morning cortisol was pretty low on my last blood test. So there's probably a problem there.
Eating definitely warms me up. I forgot, but now that you mention it, I was going to put some food by my bed & eat in the middle of the night to see what that does.
I always wake up at 2-3 am anyway, so might as well eat.
How did you stabilize your cortisol metabolism?
The main thing was that I stopped taking the NDT. With that my T3 became quite elevated and that was when my body started to metabolize cortisol too quickly leaving not enough for my body. Obviously, the NDT was the wrong ratio of T4 to T3 for me. For three months we did not see much change in my thyroid lab values, but by the 4th month there was a significant change in T3. That was when I felt like I was dying. It was not good and my family and I were in a panic.
Ray once commented in an article that he did not recognize the concept of adrenal insufficiency or fatigue and instead said he suspected a low thyroid condition that had gone undiagnosed. I would like to suggest as I'm sure others have here that adrenal fatigue can preceed or cause low thyroid secondarily so it's worthwhile to address those adrenals first and then evaluate your thyroid levels. I have done much better on the adrenal support now and in the past. As I said before the NDT was an experiment to see if I could get over the hump of fatigue that I often experience. I've had a pretty tragic last five years, lots of emergencies, panic and stress so my body eventually tanked and the hypo symptoms came rolling in. I've been trying to heal adrenals for a long time but it takes forever, especially if the stress is unrelenting.
Btw, the 2-3am waking is usually caused by low blood sugar as I'm told. Your body gives you a shot of adrenaline to keep all systems running. A snack before bed will help you sleep more soundly. Ice cream is a good one.
 
OP
S

Steve

Member
Joined
Nov 9, 2016
Messages
444
The main thing was that I stopped taking the NDT. With that my T3 became quite elevated and that was when my body started to metabolize cortisol too quickly leaving not enough for my body. Obviously, the NDT was the wrong ratio of T4 to T3 for me. For three months we did not see much change in my thyroid lab values, but by the 4th month there was a significant change in T3. That was when I felt like I was dying. It was not good and my family and I were in a panic.
Ray once commented in an article that he did not recognize the concept of adrenal insufficiency or fatigue and instead said he suspected a low thyroid condition that had gone undiagnosed. I would like to suggest as I'm sure others have here that adrenal fatigue can preceed or cause low thyroid secondarily so it's worthwhile to address those adrenals first and then evaluate your thyroid levels. I have done much better on the adrenal support now and in the past. As I said before the NDT was an experiment to see if I could get over the hump of fatigue that I often experience. I've had a pretty tragic last five years, lots of emergencies, panic and stress so my body eventually tanked and the hypo symptoms came rolling in. I've been trying to heal adrenals for a long time but it takes forever, especially if the stress is unrelenting.
Btw, the 2-3am waking is usually caused by low blood sugar as I'm told. Your body gives you a shot of adrenaline to keep all systems running. A snack before bed will help you sleep more soundly. Ice cream is a good one.
I'm about on my 4th month of NDT, so maybe things will get interesting. I'm at 2 grains right now.
I'm taking some adrenal support now also, just started.
I think my thyroid problem went south because of stress also (and a really stupid idea of taking a large iodine supplement). I'm really trying to have a mostly stress-free life now, and just want my health back. I learned my lesson!

As far as waking & adrenaline........I never get an increased heart rate. Does that it mean it's not adrenaline, or could that still be the case?
 

Nicole W.

Member
Joined
Nov 28, 2016
Messages
583
I'm about on my 4th month of NDT, so maybe things will get interesting. I'm at 2 grains right now.
I'm taking some adrenal support now also, just started.
I think my thyroid problem went south because of stress also (and a really stupid idea of taking a large iodine supplement). I'm really trying to have a mostly stress-free life now, and just want my health back. I learned my lesson!

As far as waking & adrenaline........I never get an increased heart rate. Does that it mean it's not adrenaline, or could that still be the case?
 

Nicole W.

Member
Joined
Nov 28, 2016
Messages
583
I never get the pounding heart thing in the middle of the night either, just realize that for some reason I'm awake and for a few minutes think that I could get up and start my day. Thankfully that passes and I go back to sleep. I'm 48 so I'm sure hormones have their hand in this as well as all my friends above 45 have difficulty sleeping. I actually sleep the best out of all them... For now anyway. I don't want to be reductive but after 6 years of experimenting with supplements, naturopaths, allopathy and nutritional counseling I've concluded that eating more than enough food, eating a VARIED diet ( not just one consisting of milk, fruit and gelatin with coffee thrown in for good measure), making sure minerals are optimized, gentle exercise like walking, yoga, Pilates, daily sun exposure and obviously, stress reduction if possible, go a long way in supporting health. Most vitamin deficiencies can be resolved this way and mineral with the exception of magnesium as its depleted in food now. Sometimes a lot more is needed if there is really a crisis going on and if a crisis is going on it should be pretty easily diagnosed by a naturopath and maybe an allopath. For everything else, just do what mom said... Everything in moderation.
 
OP
S

Steve

Member
Joined
Nov 9, 2016
Messages
444
I finally got my adrenal results back:
DHEAS (Saliva) 5.7 ng/mL 2-23 ng/mL (Age Dependent)
Cortisol (Saliva) 6.8 ng/mL 3.7-9.5 ng/mL (morning)
Cortisol (Saliva) 2.6 ng/mL 1.2-3.0 ng/mL (noon)
Cortisol (Saliva) 2.1 H ng/mL 0.6-1.9 ng/mL (evening)
Cortisol (Saliva) 0.7 ng/mL 0.4-1.0 ng/mL (night)

I'm not sure how to interpret all, but it doesn't seem too out-of-whack.
Does anybody see anything that would be causing me problems?

DHEAS - low-normal.
Morning cortisol - normal
Noon cortisol - normal
Evening cortisol - high
Nighttime cortisol - normal
 

Nicole W.

Member
Joined
Nov 28, 2016
Messages
583
I finally got my adrenal results back:
DHEAS (Saliva) 5.7 ng/mL 2-23 ng/mL (Age Dependent)
Cortisol (Saliva) 6.8 ng/mL 3.7-9.5 ng/mL (morning)
Cortisol (Saliva) 2.6 ng/mL 1.2-3.0 ng/mL (noon)
Cortisol (Saliva) 2.1 H ng/mL 0.6-1.9 ng/mL (evening)
Cortisol (Saliva) 0.7 ng/mL 0.4-1.0 ng/mL (night)

I'm not sure how to interpret all, but it doesn't seem too out-of-whack.
Does anybody see anything that would be causing me problems?

DHEAS - low-normal.
Morning cortisol - normal
Noon cortisol - normal
Evening cortisol - high
Nighttime cortisol - normal

As it was explained to me, cortisol should be highest in the morning and should start its descent in the afternoon... Being its lowest late in the evening. One of the hallmarks of adrenal fatigue is apparently feeling best in the afternoon/evening because cortisol is often at its highest ( after an all day low) but then getting to sleep can be problematic if it stays elevated. As to your values, you seem to be mostly in range but perhaps trending toward disfunction? There's different levels of adrenal fatigue, the first level is almost imperceptible. The second is wired but tired. Is that how you would describe how you feel?
 

papaya

Member
Joined
Mar 2, 2016
Messages
305
steve, what brand ndt are you using? unfortunately different brands work differently. even different batches from the same brand work differently sometimes. btw, that's very interesting about cortisol. it sounds like the best time to take thyroid would be at around 4:30 in the afternoon. i think i'm gonna start skipping my morning doses & try this out.
 

Waynish

Member
Joined
Oct 11, 2016
Messages
2,206
steve, what brand ndt are you using? unfortunately different brands work differently. even different batches from the same brand work differently sometimes. btw, that's very interesting about cortisol. it sounds like the best time to take thyroid would be at around 4:30 in the afternoon. i think i'm gonna start skipping my morning doses & try this out.

Would be cool to get some lab testing about the variable substances in different NDT products. The ratios and quantities of some substances could be to blame for variable side effects. The generality I've noticed with thyroid so far is that everyone should ramp up quite slow compared with other substances.
 
OP
S

Steve

Member
Joined
Nov 9, 2016
Messages
444
As it was explained to me, cortisol should be highest in the morning and should start its descent in the afternoon... Being its lowest late in the evening. One of the hallmarks of adrenal fatigue is apparently feeling best in the afternoon/evening because cortisol is often at its highest ( after an all day low) but then getting to sleep can be problematic if it stays elevated. As to your values, you seem to be mostly in range but perhaps trending toward disfunction? There's different levels of adrenal fatigue, the first level is almost imperceptible. The second is wired but tired. Is that how you would describe how you feel?
I'm never wired. I've been low energy every day for 2 years now.
Some parts of some days I feel almost normal, but it never lasts for the entire day.
I think I'm best mid-day most of the time. Worst is in the evening.

steve, what brand ndt are you using? unfortunately different brands work differently. even different batches from the same brand work differently sometimes. btw, that's very interesting about cortisol. it sounds like the best time to take thyroid would be at around 4:30 in the afternoon. i think i'm gonna start skipping my morning doses & try this out.
I'm using Westhroid Pure. It has an effect on my labs, but I don't notice anything physically.
 

Nicole W.

Member
Joined
Nov 28, 2016
Messages
583
I'm never wired. I've been low energy every day for 2 years now.
Some parts of some days I feel almost normal, but it never lasts for the entire day.
I think I'm best mid-day most of the time. Worst is in the evening.


I'm using Westhroid Pure. It has an effect on my labs, but I don't notice anything physically.
If your DHEA continues to decline it could mean that the resources/ raw materials normally used for sex hormones are being directed toward the production of cortisol.

Is your testosterone low too? That can make you tired also.

Also, even though you are within range for morning, noon and night you are low in the range at those times. It seems like your body overcompensates by dinner time when your values are quite high.
Additionally, cortisol levels can look normal but if you metabolize too quickly then it's as if your body is not getting anything. When my adrenal panel came back, my cortisol levels were normal/ high but I felt very low energy. The panel tested the metabolites in my urine and detected this imbalance of production and usage.
 
OP
S

Steve

Member
Joined
Nov 9, 2016
Messages
444
If your DHEA continues to decline it could mean that the resources/ raw materials normally used for sex hormones are being directed toward the production of cortisol.

Is your testosterone low too? That can make you tired also.

Also, even though you are within range for morning, noon and night you are low in the range at those times. It seems like your body overcompensates by dinner time when your values are quite high.
Additionally, cortisol levels can look normal but if you metabolize too quickly then it's as if your body is not getting anything. When my adrenal panel came back, my cortisol levels were normal/ high but I felt very low energy. The panel tested the metabolites in my urine and detected this imbalance of production and usage.
Interesting, thanks. I'll be getting testosterone tested next month for my annual exam. It was quite low last time I checked, so that could be causing fatigue.
I can't imagine me metabolizing anything "quickly" since my body always feels low & slow. Maybe next time though I'll do the DUTCH adrenal test which uses urine.

One thing I have noticed the past couple days is if I stay calm my low energy isn't as bad. I have some kind of anxiety thing going on, easily frustrated, irritable, social anxiety.
When the anxiety hits it makes me feel instantly worn out. Head gets woozy/dizzy/inflamed & my energy tanks..........instantly.
If I control that it seems like my energy situation is better.
Wish I knew how that all worked.......must be a stress hormone of some kind that instantly increases.
 

Nicole W.

Member
Joined
Nov 28, 2016
Messages
583
Interesting, thanks. I'll be getting testosterone tested next month for my annual exam. It was quite low last time I checked, so that could be causing fatigue.
I can't imagine me metabolizing anything "quickly" since my body always feels low & slow. Maybe next time though I'll do the DUTCH adrenal test which uses urine.

One thing I have noticed the past couple days is if I stay calm my low energy isn't as bad. I have some kind of anxiety thing going on, easily frustrated, irritable, social anxiety.
When the anxiety hits it makes me feel instantly worn out. Head gets woozy/dizzy/inflamed & my energy tanks..........instantly.
If I control that it seems like my energy situation is better.
Wish I knew how that all worked.......must be a stress hormone of some kind that instantly increases.
I manage my anxiety with magnesium glycinate, epsom salt baths and collagen hydrolosate ( gelatin). Together these three made a big impact on my mental/ emotional health. Low blood sugar can cause the dizziness you describe but again, it could be other things too. The only way to know is to have your doctor run the appropriate tests.

I know that you probably feel like you've been "resting" for the last 2 years because of the low energy and inability to do the things you want to do in life, but I do strongly believe in the idea of functional resting ( ha! my own term) as being healing to body and soul.

When we feel terrible it affects the way we view ourselves and we get hopeless. A quiet activity can keeps us productive and happy while the body can recuperate. For me, it's the idea that I'm doing calm things during the day that I enjoy and give me peace. Mentally stimulating/ interesting without being taxing/frustrating on mind or body. I'm an artist so that usually entails drawing for me or quietly making something. But it could be playing a game or building something, whatever would be enjoyable to you. It's an active meditation. I think it really pulled me through and takes my mind off everything that is going wrong in my life. It's a reprieve of sorts. That was an important piece to my health and wellness puzzle.
 
Joined
Nov 16, 2012
Messages
1,100
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.
 

Peater Pan

Member
Joined
Sep 1, 2020
Messages
300
The final thyroid product is T3 and this works with cortisol to enter the cells. Too much T3 will deplete cortisol. Too much cortisol will leave a deficit of T3. Both examples will leave us feeling ill.

Balance is the key and so we must work with the thyroid and adrenals to slowly establish a good balance again. Too many people will take to much thyroid meds. The answer is to work slowly with the thyroid meds. T4 is the gentlest form of thyroid meds on our system. The body will take it and use it as it requires.

It all sounds easy, but many people struggle getting this balance working for them and it isn't easy for many people.

Lots of people say T3 is the best thing to use. It may be but i think you need to use it in very small doses = 1/8th tablet max (approx 3mcg).

When using NTH you don't have much control over the ratio of T4 and T3. i grain has 36mcg T4 and 9mcg T3 in it. So the hit of T3 is very high just from 1 grain. IF you use T4 and T3 you have greater control over what you put in the mix.
110 T4 (dinner/bed dose) and 35-45 T3/day (~5 mcg doses spread) DOING ABSOLUTELY AWFUL two months later. AWFUL. I think I need Adrenal support.
 
Last edited:

LuMonty

Member
Joined
Mar 8, 2019
Messages
426
@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.
 

Similar threads

Back
Top Bottom