Nightmarish Life After 8 Years On SSRIs

brainfog

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Joined
Jan 6, 2017
Messages
78
Caffeine Reverses Stress, Insulin Resistance, Hypertension

Read that thread. I too had extreme response to coffee/caffeine but it will gradually be less as your liver improves its functions from the coffee/caffeine. Find a dose that dosent bother you that match, maybe that is 25mg caffeine pill or 1 table spoon coffee etc, and increase it every 5-7 days with small incraments.
 

sladerunner69

Member
Joined
May 24, 2013
Messages
3,307
Age
31
Location
Los Angeles
What I'm dealing with:

- A very high adrenaline / fight or flight baseline that will get triggered by all kinds of stimulus. For example: limited sleep, a loud environment, exercise, lots of different supplements/vitamins, etc. It is like a general hypersensitivity that makes me dump adrenaline / crash on almost any input. An example might be, I walk for 10 minutes, then suddenly feel a flash of adrenaline being dumped, and find it hard to walk any further, especially up hill. I will frequently wake up after only a few hours with a sudden spike of adrenaline, or extreme tightness in my chest, that feels painful and seems to begin while I'm physically asleep.

- Chronic fatigue. I never feel rested, on top of the constant fight or flight symptoms. I've been room/bedridden twice, soon after I tapered (very slowly) off SSRIs in both instances. First for 6 months in 2012. Secondly for another 6 months in 2016. Although I got out and started doing things again in life, I feel like I'm barely hanging on by the fingernails. I crash frequently for days to weeks at a time, where I'm almost nonfunctional. Only being a postgrad student with mid-term deadlines allows for this. There is no way in hell I could have a regular job. I've also had to do things like get taxis to go 200meters up a hill.

- No tolerance for any stimulants, including caffeine. No tolerance for alcohol. No tolerance for sugar, a smoothie will make me crash big time within a few hours.

- Limited tolerance for relaxants. For instance, valium might knock me out, but it will make me feel fragile, disorientated, and have very strong rebounds. I take it rarely, but it used to just have a simple relaxing effect.

- Lots of trouble concentrating, remembering, keeping track of my own life. I'll lose track of weeks. Or physically something will happen. For instance, it will be extremely hot one night, I won't sleep at all, that starts a spiral of anxiety and adrenaline, I won't sleep again... I spend the entire week in a state of disorientation and cycling anxiety/fatigue until by fluke I manage to sleep a little or knock myself out somehow.

- My pulse is pretty low. 60 resting, 42 average over night. 50 in the morning. Despite exercising almost nothing. I used to be an athlete when I was younger though. And anxiety is a pretty good workout.
-----------------------------------

What caused it?

-I was on SSRIs a total of 8/9 years. Starting at age 17. With several attempts to stop. Firstly, celexa for 6 years. Then 6 months house bound when I tapered off. Then it was reintroduced. Meanwhile, I was still gradually falling apart and the "poop out" of staying on the pills was barely better than the protracted withdrawals of being off them.

Secondly, I tapered off again a few years later. The exact same thing happened. The symptoms above.... I went back onto a different drug, sertraline. This was extremely stimulating and made everything even worse. I tapered off it slowly again, and I find myself exactly where I was just before I got bedridden the last few times. Having the symptoms above.

-------------------------------------

How I understand it:

-Some long term damage to the serotoninergic and related systems through long term usage, especially given that I started at 17.

-Habituated stress responses or some kind of adrenal fatigue caused by protracted withdrawals, and years and years spent in a "fight or flight" mode.

-The cause as being physiological at this point. I also did 5,000+ hours of meditation in the last few years to alleviate the suffering of my condition. I managed to silence my mind. I managed to come to a place of watch what is happening to me without reacting to it. Despite this, everything on a physiological level continued. Nothing changed.

----------------------

What I've tried:

- Meditation (5000+ hours), bioenergetics, rolfing, alexander technique, breathing exercises, the buteyko technique (I raised my CP from 5 to 30, but my symptoms are 90% the same or quickly rebound to a low CP upon discontinuation). Also, trauma release exercises, various shaking and breathing things.
- Ashwaganda, bacopa, phosphatidylserine, tagara herb (similar structure to benzos), CLO, bacopa, N-Acetyl-Glucosamine, R-ALA, various super high potency multi vits like "Life Extension Mix, probably more than I can count. Almost nothing was helpful, or had strong rebounds.
- Valium, zopiclone (when I really couldn't sleep). Quickly made things much worse and I discontinued.
- Keeping busy, pushing forward, acting normal. Quickly burned me out and I ended up far worse than simply being gentle with myself.
- Exercising lightly. I'm either too fatigued, or adrenaline dump within 5 minutes of starting light exercise.
- Cardiologists, neurologists, GPs. I fainted twice too, and several times had anxiety / fight or flight so extreme I ended up in A&E overnight. No-one helped me, although a cardiologist suggested looking into low cortisol.

Also, about 100 other things that my mind isn't working too well to remember.

-----------------------

Blood tests have revealed almost nothing, except high-ish Triglycerides, a low-ish prediabetic hba1c. The only thing I haven't test is 24 hour Cortisol, although I'm not entirely sure if this will be useful?

What I'm considering

I could really do with some way of re-regulating the damage SSRIs did.

And secondly, to bring myself down and out of the constant fight or flight cycle I've been stuck inside for years. There seems to be no "rest and digest" response for me, I'm stuck inside a tumble dryer from hell.

- Mirtazapine, I have some in my drawer now but have not tried. Something I specifically requested to try after researching the anti-andrenaline/cortisol effects. I considered either starting it or using it once in a while when a crash cycle starts. I'm concerned about more withdrawals though.

- Cyproheptadine, have seen good words spoken about it here.


Otherwise, I'm really open to hearing anything that might help, or recommendations for more tests to do. Right now, I'm living 1% of the life I'd like to be living. I'd give any amount of money, or even both legs, to resolve these problems. They've continued such a long time, and I'm so...so worn out by it all. I'm only 25 but I feel incredibly old.

Boo hoo... Many thanks for reading !

- Johnson


Meditation is cute but what is your diet like?
 
OP
J
Joined
Jun 21, 2017
Messages
104
When I read your OP, I thought 24-hour cortisol could be insightful.

It sounds like you have chronic HPA activation, maybe elevated CRH, but measuring cortisol might be helpful. Have you considered an anti-serotonin drug and maybe a course of naltrexone? Both have stabilizing effects, and in your situation could be useful. Tianeptine has been mentioned, and its safe, as is cyproheptadine.

Also progesterone and DHEA together can protect nerves, along with niacinamide as mentioned.

Hi Dave,

I've taken mirtazapine 3.5 - 7.5mg for about 10 days. It seems to have been beneficial to get me out of intense fight or flight. Baseline agitation is still high, but I know longer feel unable to do anything. Two observations:

- Sleep quality is actually significantly lower by about 30%, although I tend to remain asleep longer. I tracked this with wearable devices monitoring restlessness / REM / deep sleep time.

- Resting heart rate is up 8-10 BPM ( from 45 to 55) since introducing mirtazapine, which seems like a good thing, since it was very low for someone who doesn't exercise at all.


I'm going to order cyproheptadine and try that too, especially for the antiserotonin properties, which may not be significant at 3.5mg miritazapine?


Any observations or insights greatly appreciated.
 

Peata

Member
Joined
Jun 12, 2013
Messages
3,402
What I'm dealing with:

- A very high adrenaline / fight or flight baseline that will get triggered by all kinds of stimulus. For example: limited sleep, a loud environment, exercise, lots of different supplements/vitamins, etc. It is like a general hypersensitivity that makes me dump adrenaline / crash on almost any input. An example might be, I walk for 10 minutes, then suddenly feel a flash of adrenaline being dumped, and find it hard to walk any further, especially up hill. I will frequently wake up after only a few hours with a sudden spike of adrenaline, or extreme tightness in my chest, that feels painful and seems to begin while I'm physically asleep.

- Chronic fatigue. I never feel rested, on top of the constant fight or flight symptoms. I've been room/bedridden twice, soon after I tapered (very slowly) off SSRIs in both instances. First for 6 months in 2012. Secondly for another 6 months in 2016. Although I got out and started doing things again in life, I feel like I'm barely hanging on by the fingernails. I crash frequently for days to weeks at a time, where I'm almost nonfunctional. Only being a postgrad student with mid-term deadlines allows for this. There is no way in hell I could have a regular job. I've also had to do things like get taxis to go 200meters up a hill.

- No tolerance for any stimulants, including caffeine. No tolerance for alcohol. No tolerance for sugar, a smoothie will make me crash big time within a few hours.

- Limited tolerance for relaxants. For instance, valium might knock me out, but it will make me feel fragile, disorientated, and have very strong rebounds. I take it rarely, but it used to just have a simple relaxing effect.

- Lots of trouble concentrating, remembering, keeping track of my own life. I'll lose track of weeks. Or physically something will happen. For instance, it will be extremely hot one night, I won't sleep at all, that starts a spiral of anxiety and adrenaline, I won't sleep again... I spend the entire week in a state of disorientation and cycling anxiety/fatigue until by fluke I manage to sleep a little or knock myself out somehow.

- My pulse is pretty low. 60 resting, 42 average over night. 50 in the morning. Despite exercising almost nothing. I used to be an athlete when I was younger though. And anxiety is a pretty good workout.
-----------------------------------

What caused it?

-I was on SSRIs a total of 8/9 years. Starting at age 17. With several attempts to stop. Firstly, celexa for 6 years. Then 6 months house bound when I tapered off. Then it was reintroduced. Meanwhile, I was still gradually falling apart and the "poop out" of staying on the pills was barely better than the protracted withdrawals of being off them.

Secondly, I tapered off again a few years later. The exact same thing happened. The symptoms above.... I went back onto a different drug, sertraline. This was extremely stimulating and made everything even worse. I tapered off it slowly again, and I find myself exactly where I was just before I got bedridden the last few times. Having the symptoms above.

-------------------------------------

How I understand it:

-Some long term damage to the serotoninergic and related systems through long term usage, especially given that I started at 17.

-Habituated stress responses or some kind of adrenal fatigue caused by protracted withdrawals, and years and years spent in a "fight or flight" mode.

-The cause as being physiological at this point. I also did 5,000+ hours of meditation in the last few years to alleviate the suffering of my condition. I managed to silence my mind. I managed to come to a place of watch what is happening to me without reacting to it. Despite this, everything on a physiological level continued. Nothing changed.

----------------------

What I've tried:

- Meditation (5000+ hours), bioenergetics, rolfing, alexander technique, breathing exercises, the buteyko technique (I raised my CP from 5 to 30, but my symptoms are 90% the same or quickly rebound to a low CP upon discontinuation). Also, trauma release exercises, various shaking and breathing things.
- Ashwaganda, bacopa, phosphatidylserine, tagara herb (similar structure to benzos), CLO, bacopa, N-Acetyl-Glucosamine, R-ALA, various super high potency multi vits like "Life Extension Mix, probably more than I can count. Almost nothing was helpful, or had strong rebounds.
- Valium, zopiclone (when I really couldn't sleep). Quickly made things much worse and I discontinued.
- Keeping busy, pushing forward, acting normal. Quickly burned me out and I ended up far worse than simply being gentle with myself.
- Exercising lightly. I'm either too fatigued, or adrenaline dump within 5 minutes of starting light exercise.
- Cardiologists, neurologists, GPs. I fainted twice too, and several times had anxiety / fight or flight so extreme I ended up in A&E overnight. No-one helped me, although a cardiologist suggested looking into low cortisol.

Also, about 100 other things that my mind isn't working too well to remember.

-----------------------

Blood tests have revealed almost nothing, except high-ish Triglycerides, a low-ish prediabetic hba1c. The only thing I haven't test is 24 hour Cortisol, although I'm not entirely sure if this will be useful?

What I'm considering

I could really do with some way of re-regulating the damage SSRIs did.

And secondly, to bring myself down and out of the constant fight or flight cycle I've been stuck inside for years. There seems to be no "rest and digest" response for me, I'm stuck inside a tumble dryer from hell.

- Mirtazapine, I have some in my drawer now but have not tried. Something I specifically requested to try after researching the anti-andrenaline/cortisol effects. I considered either starting it or using it once in a while when a crash cycle starts. I'm concerned about more withdrawals though.

- Cyproheptadine, have seen good words spoken about it here.


Otherwise, I'm really open to hearing anything that might help, or recommendations for more tests to do. Right now, I'm living 1% of the life I'd like to be living. I'd give any amount of money, or even both legs, to resolve these problems. They've continued such a long time, and I'm so...so worn out by it all. I'm only 25 but I feel incredibly old.

Boo hoo... Many thanks for reading !

- Johnson

I haven't read through all the posts, but I went through withdrawals from ssri more than once, and there are some threads on here about it if you care to look. Might be something useful there.

But here's what Dr. Peat said, and to give credit I think this came from peatarian.com a long time ago:

[Weaning off anti-depressants] Keeping the metabolic rate and cholesterol up is important, so that repair and adaptation will be quick. Progesterone reduces pain and anxiety, and pregnenolone would be the most convenient supplement for men, but it's hard to find products without allergens. Combining progesterone and DHEA or testosterone can produce the stabilizing effect without suppressing the libido. Benadryl and cyproheptadine are probably both helpful. Withdrawal from morphine and SSRIs and migraine involve some similar processes.

I knew someone who had been addicted to morphine and alcohol for 30 years, who was drinking quarts of beer and wine daily when he didn't have morphine, who had an opportunity for a good job if he could get sober. Starting progesterone at bedtime (and stopping the wine), he said it was the first time he didn't have a hangover in the morning. He used enough progesterone to neuter most people, but said it didn't affect his sex function; he was taking a lot of Cytomel and magnesium, but wasn't drunk again as long as I knew him, and his general health improved.

[Continued] The person I described who recovered so completely took about 1000 mg of progesterone during the first night, and more than 1000 mg daily for a few weeks, but that much could make some people comatose; it's a matter of individual hormone status. I think the SSRI drugs continue to do harm, even when they reduce withdrawal symptoms.

[Weaning off anti-depressants] It depends on how much pregnenolone you can assimilate. People would use progesterone in amounts needed to stop the withdrawal symptoms, but pregnenolone doesn't have the powerful effects of progesterone, even in multi-gram quantities, so it's just a matter of seeing what it can do. As I understand the mechanism (migraine, withdrawal, etc.), estrogen-histamine-serotonin rise on a background of hypothyroid liver malfunction, cytomel (and/or sugar, selenium, B vitamins) allows the liver and other detoxifying systems to lower them, and the lower they are, the less progesterone or pregnenolone it takes to block the symptoms.
 

DaveFoster

Member
Joined
Jul 23, 2015
Messages
5,027
Location
Portland, Oregon
Hi Dave,

I've taken mirtazapine 3.5 - 7.5mg for about 10 days. It seems to have been beneficial to get me out of intense fight or flight. Baseline agitation is still high, but I know longer feel unable to do anything. Two observations:

- Sleep quality is actually significantly lower by about 30%, although I tend to remain asleep longer. I tracked this with wearable devices monitoring restlessness / REM / deep sleep time.

- Resting heart rate is up 8-10 BPM ( from 45 to 55) since introducing mirtazapine, which seems like a good thing, since it was very low for someone who doesn't exercise at all.


I'm going to order cyproheptadine and try that too, especially for the antiserotonin properties, which may not be significant at 3.5mg miritazapine?


Any observations or insights greatly appreciated.
Your heart rate is far too low for someone who doesn't exercise. Have you tried thyroid?
 
OP
J
Joined
Jun 21, 2017
Messages
104
Your heart rate is far too low for someone who doesn't exercise. Have you tried thyroid?

Not yet, I just got back thyroid results. I don't have a clue how to interpret them. Or what to try with thyroid exactly:

Thyroid Function
THYROID STIMULATING HORMONE 1.30 mIU/L 0.27 - 4.2 (10 mins after eating)
FREE THYROXINE 19.1 pmol/l 12.0 - 22.0
TOTAL THYROXINE(T4) 78 nmol/L 59 - 154
FREE T3 5.3 pmol/L 3.1 - 6.8
Thyroid Antibodies
Thyroglobulin Antibody 10.4 IU/mL 0-115
Method used for Anti-Tg: Roche Modular
Thyroid Peroxidase Antibodies 7.6 IU/mL 0 - 34
Method used for Anti-TPO: Roche Modular


Morning axillary temps are 34.9 - 35.0 ish


Other out of range readings:

IRON 10.4 umol/L 10.6- 28.3
TRIGLYCERIDES * 2.7 mmol/L < 2.3
Albumin/Globulin Ratio 2.7 range <2.0
GAMMA GT* 9 IU/L 10-71

Prostate Specific Ag(Total) 0.87 ug/l 0.00-1.40
Prostate Specific Ag(Free) 0.13 ug/l 0-0.90
Free:Total ratio 0.15 >0.19 is normal
 

DaveFoster

Member
Joined
Jul 23, 2015
Messages
5,027
Location
Portland, Oregon
Not yet, I just got back thyroid results. I don't have a clue how to interpret them. Or what to try with thyroid exactly:

Thyroid Function
THYROID STIMULATING HORMONE 1.30 mIU/L 0.27 - 4.2 (10 mins after eating)
FREE THYROXINE 19.1 pmol/l 12.0 - 22.0
TOTAL THYROXINE(T4) 78 nmol/L 59 - 154
FREE T3 5.3 pmol/L 3.1 - 6.8
Thyroid Antibodies
Thyroglobulin Antibody 10.4 IU/mL 0-115
Method used for Anti-Tg: Roche Modular
Thyroid Peroxidase Antibodies 7.6 IU/mL 0 - 34
Method used for Anti-TPO: Roche Modular


Morning axillary temps are 34.9 - 35.0 ish


Other out of range readings:

IRON 10.4 umol/L 10.6- 28.3
TRIGLYCERIDES * 2.7 mmol/L < 2.3
Albumin/Globulin Ratio 2.7 range <2.0
GAMMA GT* 9 IU/L 10-71

Prostate Specific Ag(Total) 0.87 ug/l 0.00-1.40
Prostate Specific Ag(Free) 0.13 ug/l 0-0.90
Free:Total ratio 0.15 >0.19 is normal
Your TSH is higher than optimal, but maybe you could benefit from 1/4 grain or so. Just eating regularly meals might help as well, but some have to get their TSH < 0.1 to get relief from symptoms. Just make sure to take your temperature and pulse after your first meal.
 
OP
J
Joined
Jun 21, 2017
Messages
104
Your TSH is higher than optimal, but maybe you could benefit from 1/4 grain or so. Just eating regularly meals might help as well, but some have to get their TSH < 0.1 to get relief from symptoms. Just make sure to take your temperature and pulse after your first meal.

Is it a case of the lower the better, with TSH? I'm also aware that I did this postprandial, and fasting readings are typically very different?

A few quick fire questions:

- What exactly do post meal temperature and pulse indicate?
- What signifies improvement?
- What exactly is a "a grain" and how do I obtain what you'd recommend without prescription?

Johnson
 

ruprmurdoch

Member
Joined
Mar 22, 2017
Messages
97
check out your cortisol, acth,lh,fsh testosterone, this will give you answer what to do later. if your acth is high, then your cortisol is high. So Lh and fsh are probbably low, which make your testosterone levels low. It's important to do those lab tests at once in morning hours.
 
OP
J
Joined
Jun 21, 2017
Messages
104
check out your cortisol, acth,lh,fsh testosterone, this will give you answer what to do later. if your acth is high, then your cortisol is high. So Lh and fsh are probbably low, which make your testosterone levels low. It's important to do those lab tests at once in morning hours.

Thank you. It's the opposite actually, 8am cortisol is abnormally low @120nmol - range 200-600. Testosterone is mid range, but is half what it was 2 years ago (abnormally high). Other general symptoms are hypothyroidy, but TSH is 3 so I'd have to self medicate it in my country.

ACTH etc are being investigated soon, or to find out whatever is causing the low cortisol. It feels like adrenaline is pumping into me to keep me alert / to wake me up / etc, perhaps to make up for this deficiency and whatever is causing it.

Johnson
 

marsaday

Member
Joined
Mar 8, 2015
Messages
481
I read your OP and think this is a thyroid issue.

Your thyroid results look quite good however. You don't really have any thyroid antibodies so you can rule out hashimotos illness (autoimmune).

You Ft4 is higher in range as is the FT3. TSH is in the 1 area and this is quite normal. However many thyroid patients want to aim for a level of 1 to 0.5.

Total thyroid is lower.

Any doc would look at these results and say all is well here.

BUT your symptoms scream low thyroid. You may have an absorption issue here though due to impaired cortisol function. The cortisol helps take the T3 into the cell and when this happens we have energy and feel good. With low or high cortisol this transport is impaired.

When you are not getting a good supply of T3 you will have lower temps, HR, and high adrenaline levels. Adrenaline is the natural way the body has of providing the energy we need for day to day activities. It is supposed to be a temporary system as we should run off the thyroid system long term. Many people though have a dodgy thyroid / adrenal system and so adrenaline and prolactin step in and this is not healthy long term.

There are a few things you can do to see what will help you.

1) Look into the vitamins and minerals which will generally improve health what ever issue you have. This doesn't mean throwing lots of separate tablets down your throat, but find a good multi vitamin/mineral and start taking one. Vitamin D, magnesium, B12 are the biggies for me to look at taking.

2) Trial some thyroxine and see how you react. This is T4 only and not NTH. Typical brands are synthroid or levothyroxine. They can be bought on the net and a good trial dose is 25mcg tablet size. You would take one per day for 3 weeks and see if any changes occur. Many people choose to use T3 only, but T4 is a better bet when looking into thyroids meds initially. It is softer on the body and doesn't deplete cordial so fast as T3. We make T4 and T3 in our body, but we make more T4 and we then convert this into T3 in the liver. All our cells run on T3.

Another indicator of poor thyroid function is higher cholesterol. You have elevated triglycerides so this might mean the rest of your cholesterol panel is higher. Thyroid hormone stimulates the cholesterol to be used by the body to make the steroid hormones. Low thyroid patients often have higher cholesterol and it will go down once they take medication.

3) Trial some progesterone. You would use Ray peats own product called ProgestE. It is natural progesterone and delivers it in small drops which = 3mg each. As a male you only want to use the lowest amount of progesterone you can. We make 10-20mg per day so the maximum you want to be using is 3 drops = 9mgs.

Progesterone will break down and deliver the steroid hormones you are missing. So it is very good if dealing with cortisol issues (low or high). The progesterone will improve thyroid absorption and it may be all you need and no thyroid meds. So i would first try the progesterone and see how you get on.

To improve your health is all about trial and error. You can and will get better. Don't listen to the docs if they are banging on about mental issues. You have something physically not working and it is so common. When you were on SSRI's were you better then ? I assume not. SSRI's help boost cortisol and this is why they work.

I was 21 when i became ill - no energy, tired, lost weight, bloated stomach, peeing all the time, lost strength and stamina, became paler in appearance. For 16 yrs i took and SSRI. I kept telling the docs i was ill, but they said depression but no one could work out why. A low sperm test result was the reason why i started to look into my health issues (trying for a baby) and i chanced upon thyroid medication. I started on it 9 yrs ago and have never looked back. I stopped the SSRI's immediately and felt better within days. The body wanted that thyroid medication.

However, getting better has not been a case of taking thyroid meds only. My system was pretty damaged, but some after trail and error i have worked out what my body needs. Vitamin D is important and makes a big difference, progesterone makes a huge difference and obviously the thyroid medication. I am now mid 40's and much fitter than i ever was in my 20's and 30's. I just wish i could have taken this stuff when i was 21 so i didn't have to loose so many years of my life.

Your story sounds very similar. I remember things got very scary when i was struggling walking in a straight line because i was so dizzy. I basically broke down on the phone to the doc because i had no idea what was happening to me. They had no idea either, but the internet enlightened me many years later. Apparently this dizzy feeling is very common for low thyroid patients and i have seen many patients on the thyroid forum talk about this happening to them.
 
OP
J
Joined
Jun 21, 2017
Messages
104
I read your OP and think this is a thyroid issue.

This was an incredibly useful post. Thank you very much for all the time you spent writing this, your astute advice and empathy. Since I initially wrote the OP and first few posts, I got some more tests. So I'm just adding some comments in green to what you've written below:

Your thyroid results look quite good however. You don't really have any thyroid antibodies so you can rule out hashimotos illness (autoimmune).

You Ft4 is higher in range as is the FT3. TSH is in the 1 area and this is quite normal. However many thyroid patients want to aim for a level of 1 to 0.5.

I realized that I got the first Thyroid panel immediately after eating, and read some studies showing post-prandial significantly suppresses TSH. I got this retested twice. The results were 2.7 and 2.9 for TSH. So this is far above the ideal ~0.5-1. I think this supports your view even more


Total thyroid is lower.

Any doc would look at these results and say all is well here.

That's exactly what's happened. 2 years ago, I sent my GP a big written list of symptoms and my theory that it was an endocrine/thyroid problem, based on how everything related, how SSRIs + psychiatric medications did not help matters, etc. You know how it was seen? My suggestions and interpretations were interpreted as evidence of hypochondria and evidence of mental health problems. Meanwhile, I was incredibly dizzy like you, bedridden, and felt like my body couldn't produce any energy. Totally stuck.

BUT your symptoms scream low thyroid. You may have an absorption issue here though due to impaired cortisol function. The cortisol helps take the T3 into the cell and when this happens we have energy and feel good. With low or high cortisol this transport is impaired.

When you are not getting a good supply of T3 you will have lower temps, HR, and high adrenaline levels. Adrenaline is the natural way the body has of providing the energy we need for day to day activities. It is supposed to be a temporary system as we should run off the thyroid system long term. Many people though have a dodgy thyroid / adrenal system and so adrenaline and prolactin step in and this is not healthy long term.

This is interesting, I was curious how Thyroid and cortisol were related. I assumed they were but didn't understand the direct link. I'm wondering if the reverse could be true also. Could poor thyroid function deplete or lower cortisol over time? That is it to say, will improving thyroid function likely raise cortisol over time just by itself?


There are a few things you can do to see what will help you.

1) Look into the vitamins and minerals which will generally improve health what ever issue you have. This doesn't mean throwing lots of separate tablets down your throat, but find a good multi vitamin/mineral and start taking one. Vitamin D, magnesium, B12 are the biggies for me to look at taking.

I definitely will do, I'm thinking about ordering Haiduts "estroban" AEDK2 formula. I will say though, that I've had rather paradoxical reactions to many things. Glycine for instance, triggered a stress reaction. Cyproheptadine (even 0.2mg) plummeted my temps/pulse even more. Magnesium, vit D and b12 produced a strange agitation, and so on. So I'm trying to keep it super simple. The first 2 reactions I understand in that cortisol may have been blunted even more. But some are beyond my biochemical understanding. I assume an impaired metabolism is simply intolerant to a lot of things, and taking things in suboptimal ratios is more likely to cause some kind of stress reaction?


2) Trial some thyroxine and see how you react. This is T4 only and not NTH. Typical brands are synthroid or levothyroxine. They can be bought on the net and a good trial dose is 25mcg tablet size. You would take one per day for 3 weeks and see if any changes occur. Many people choose to use T3 only, but T4 is a better bet when looking into thyroids meds initially. It is softer on the body and doesn't deplete cordial so fast as T3. We make T4 and T3 in our body, but we make more T4 and we then convert this into T3 in the liver. All our cells run on T3.

Do you still have this view based on the updated TSH above? I feel quite reluctant to try anything right now because I'm already extremely fragile, but will certainly look to try very small doses to start with. Is there any risk of this having a negative effect?


Another indicator of poor thyroid function is higher cholesterol. You have elevated triglycerides so this might mean the rest of your cholesterol panel is higher. Thyroid hormone stimulates the cholesterol to be used by the body to make the steroid hormones. Low thyroid patients often have higher cholesterol and it will go down once they take medication.

3) Trial some progesterone. You would use Ray peats own product called ProgestE. It is natural progesterone and delivers it in small drops which = 3mg each. As a male you only want to use the lowest amount of progesterone you can. We make 10-20mg per day so the maximum you want to be using is 3 drops = 9mgs.

Progesterone will break down and deliver the steroid hormones you are missing. So it is very good if dealing with cortisol issues (low or high). The progesterone will improve thyroid absorption and it may be all you need and no thyroid meds. So i would first try the progesterone and see how you get on.

Likewise, I've been recommended this before by a few knowledgeable people here. Are you fairly confident it cannot have a negative effect in fairly low doses?


To improve your health is all about trial and error. You can and will get better. Don't listen to the docs if they are banging on about mental issues. You have something physically not working and it is so common. When you were on SSRI's were you better then ? I assume not. SSRI's help boost cortisol and this is why they work.

I was 21 when i became ill - no energy, tired, lost weight, bloated stomach, peeing all the time, lost strength and stamina, became paler in appearance. For 16 yrs i took and SSRI. I kept telling the docs i was ill, but they said depression but no one could work out why. A low sperm test result was the reason why i started to look into my health issues (trying for a baby) and i chanced upon thyroid medication. I started on it 9 yrs ago and have never looked back. I stopped the SSRI's immediately and felt better within days. The body wanted that thyroid medication.

However, getting better has not been a case of taking thyroid meds only. My system was pretty damaged, but some after trail and error i have worked out what my body needs. Vitamin D is important and makes a big difference, progesterone makes a huge difference and obviously the thyroid medication. I am now mid 40's and much fitter than i ever was in my 20's and 30's. I just wish i could have taken this stuff when i was 21 so i didn't have to loose so many years of my life.

Your story sounds very similar. I remember things got very scary when i was struggling walking in a straight line because i was so dizzy. I basically broke down on the phone to the doc because i had no idea what was happening to me. They had no idea either, but the internet enlightened me many years later. Apparently this dizzy feeling is very common for low thyroid patients and i have seen many patients on the thyroid forum talk about this happening to them.

I have a lot of empathy for your situation too, and it's wonderful to hear you have resolved it to a large degree. Since 10 years ago, I described my symptoms as purely physical / somatic - bedridden, intolerant to exercise, insomnia, not producing any energy - and yet was only treated as having mental health problems. Your story gives a lot of hope. And I can imagine it must have been even more awful to not have the internet, or to not be scientifically minded to some degree. I imagine it is common for a lot of people to simply have their general Doctor as their only source of information and solutions, and be stuck for decades, or potentially never know that there was a deceptively simple solution to their problems. I'm very grateful to you and for the existence of this forum.


Johnson
 

marsaday

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481
I realized that I got the first Thyroid panel immediately after eating, and read some studies showing post-prandial significantly suppresses TSH. I got this retested twice. The results were 2.7 and 2.9 for TSH. So this is far above the ideal ~0.5-1. I think this supports your view even more

This is a better indicator that the thyroid is not good. Mine was 2.4 aged 21 and i was very ill. Aged 37 i had a maximum TSH of 3.3. Even today most doctors would not treat me for thyroid illness. So i had to go it alone and trial some myself. I got better then stopped after 6 months. I then became unwell again about 2 months later. At the time this was all new to me and i was scratching my head not understanding what was going wrong. I sound stupid today saying it but at the time i really was lost.

So i struggled on again and after another 6 months i started on the thyroid meds again. I got better again. This time i requested a meeting with an end0. He listened to my ad hoc experimentation and agreed i needed the thyroid meds because of what had happened. I now get treatment on the NHS.

IF we went back in time before the TSH test doctors would test for hypothyroidism using cholesterol, temperature and general signs and symptoms. If they weren't sure they would trial the patient on some thyroid meds. It is only after the introduction of the TSH test that we started to develop these mystery chronic fatigue illnesses in the 80's.

That's exactly what's happened. 2 years ago, I sent my GP a big written list of symptoms and my theory that it was an endocrine/thyroid problem, based on how everything related, how SSRIs + psychiatric medications did not help matters, etc. You know how it was seen? My suggestions and interpretations were interpreted as evidence of hypochondria and evidence of mental health problems. Meanwhile, I was incredibly dizzy like you, bedridden, and felt like my body couldn't produce any energy. Totally stuck.



This is interesting, I was curious how Thyroid and cortisol were related. I assumed they were but didn't understand the direct link. I'm wondering if the reverse could be true also. Could poor thyroid function deplete or lower cortisol over time? That is it to say, will improving thyroid function likely raise cortisol over time just by itself?


Generally all thyroid patients with an under active thyroid have a low cortisol profile. Certainly morning cortisol is low because the thyroid production at nighttime is low. We make our thyroid hormone in the first part of the night and in the second we make cortisol. The two hormones are in balance and so match each other approx. Taking thyroid meds at bedtime is the best time to take the hormones for a lot of people. As soon as you take thyroid hormones cortisol will reboot.

However, because of this relationship it can be much harder than just supplementing thyroid to return health. Lots of attention has to be paid to the adrenal area as well. I think if patients who get onto thyroid medication sooner have less longer term issues getting a good balance.


I definitely will do, I'm thinking about ordering Haiduts "estroban" AEDK2 formula. I will say though, that I've had rather paradoxical reactions to many things. Glycine for instance, triggered a stress reaction. Cyproheptadine (even 0.2mg) plummeted my temps/pulse even more. Magnesium, vit D and b12 produced a strange agitation, and so on. So I'm trying to keep it super simple. The first 2 reactions I understand in that cortisol may have been blunted even more. But some are beyond my biochemical understanding. I assume an impaired metabolism is simply intolerant to a lot of things, and taking things in suboptimal ratios is more likely to cause some kind of stress reaction?

I also agree to approach everything from a simple point of view. Returning metabolism to a decent rate is better done with small baby steps and can take years to really get up to speed. The key though is to return a good quality of life and this can come quite quickly, but to be 100% will take longer.



Do you still have this view based on the updated TSH above? I feel quite reluctant to try anything right now because I'm already extremely fragile, but will certainly look to try very small doses to start with. Is there any risk of this having a negative effect?

I do think a trial of T4 would be good. For me i could feel an improvement on the first day so this is the sign i would be looking for. You sound in touch with your body so a general positive outcome would be noticed quite quickly i think. You could potentially get some heightened anxiety, but i think the reverse will happen. Again taking 25 T4 is a low dose and a normal fully replacement dose is 1.8mcg per kg body weight.

Likewise, I've been recommended this before by a few knowledgeable people here. Are you fairly confident it cannot have a negative effect in fairly low doses?

Progesterone or specifically ProgestE is very good for men, but in small doses. You have total control over an amount you take. One drop is going to do something for you within 2 hours. Again i think you will be able to tell if this is potentially something you would need. You are going to have to trial some of these products because i am pretty sure they will be useful for you. If your body doesn't need them you should know pretty quickly.

Ideally i would get the two hormones at the same time and see how one goes first of all and then introduce the other fairly soon after starting one. Again the two hormones are working together and raising the metabolism will be more effective using the two.


I have a lot of empathy for your situation too, and it's wonderful to hear you have resolved it to a large degree. Since 10 years ago, I described my symptoms as purely physical / somatic - bedridden, intolerant to exercise, insomnia, not producing any energy - and yet was only treated as having mental health problems. Your story gives a lot of hope. And I can imagine it must have been even more awful to not have the internet, or to not be scientifically minded to some degree. I imagine it is common for a lot of people to simply have their general Doctor as their only source of information and solutions, and be stuck for decades, or potentially never know that there was a deceptively simple solution to their problems. I'm very grateful to you and for the existence of this forum.
 

Texon

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Nov 28, 2016
Messages
672
@Johnson Bagfoot I just came across this amazing thread. I have some similar symptoms that don't involve SSRI s but do seem related to a couple of surgeries I had to repair a crushed elbow from a biking accident. Also I was one of about 1500 people nationwide that suffered from tryptophan poisoning (aka eosinophilic myalgia syndrome) back in 1989-1990. Symptoms were similar to going through chemotherapy along with a lot of muscle pain. Several people died and most were prescribed prednisone which I never took. Long term effects...no one knows as far as I know. The syndrome could never be repeated in a lab setting.

Dealing with a body on maximum alert 24/7 is horrific to say the least. I am older than you and have tried I think almost everything under the sun. My best suggestion if you haven't tried this already would be the same as an herbalist told me to do for the EMS. I took 4 capsules each 4x/day of astragalus root and marshmallow root in capsule form. Try to stay away from Chinese sources if possible which may be impossible with astragalus. If I had to choose one or the other, go with marshmallow root. It is is incredibly soothing and calming overall. I have just started taking this again after forgetting about it for awhile and it seems to be helping as before.
 

fitnessgirl

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Apr 8, 2020
Messages
15
Low cortisol or ACTH sounds very likely here especially seeing that you feel bad on valium which blocks cortisol receptor through GABA.
 

Texon

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Joined
Nov 28, 2016
Messages
672
Low cortisol or ACTH sounds very likely here especially seeing that you feel bad on valium which blocks cortisol receptor through GABA.
I would also suggest looking into everything you can about vitamin B1 aka thiamine via Dr. Derrick Lonsdale. It is a VERY big deal especially in light of high sugar/carb diets so common nowadays.
 
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