HRT and Dysautonomia/CFS?

[Figuring]

Hello everyone,

I’ve seen many posters here across other boards and there seems to be some great minds here so hopefully someone might be able to assist me…

About three years ago my health took a turn for the worse. I was fatigued, relying on coffee to get me through the day and lost quite a bit of weight. I decided at this point I needed to take my health seriously so I cleaned up my diet, changed my schedule to get good sleep etc. I improved a lot but something was still wrong.

About a year ago I started HRT under the care of a doctor. First thing we identified was bad adrenal function. My blood AM cortisol was low and my saliva cortisol profile showed my level as a <1 almost all day long. I was put on HC at 25mg per day and it made a huge difference. I started to gain weight back, I was sleeping less but way more rested, no more panic attacks and fatigue...it was good.

Next we addressed my low testosterone. My levels were <300 along with low LH/FSH. I was put on T gel each day which helped some but I was getting some high estrogen side effects.

After being on both the HC and T gel for a few months we did thyroid labs because I’ve always had low thyroid symptoms. My FT4 was top of the range, FT3 bottom of the range and my reverse T3 was nearly DOUBLE the top end of the lab range! I was put on armour at first in small amounts and started supp’ing iodine, selenium, B12, etc. to try and improve conversion without any luck. After that I was switched to cytomel/armour which made a huge difference and I was feeling really good!

This summer I was feeling pretty tuned up on the HC and thyroid meds but I was still having some high E2 levels so my doc suggested trying testosterone injections.

This is where it gets bad…

After my first T injection I had an episode of tachycardia/pounding heart about 24 hours later and these symptoms persisted somewhat for days after. My doc suggested it might be the T giving a brief boost in thyroid levels and asked if I wanted to continue trying the shots. I agreed. I only did two more shots and not long after the last one I had tachycardia so bad I ended up in the ER and then admitted to the hospital for 4 days. Everyone there said they had never heard of the injections doing such a thing and also surmised it could be somehow related to thyroid function.

I was given tests for all thyroid antibodies, pituitary MRI, EKG, stress test, echocardiogram, thyroid ultrasound etc. All showed nothing strange and my thyroid labs show my levels only about 2/3 of lab range, not hyper.

After this incident I developed symptoms of orthostatic intolerance (without hypotension). My heart rate jumps rapidly upon standing or exertion. If I wake in the middle of the night to pee it will shoot up from 60 to 130 in a second and stay there for an hour sometimes. Heat is intolerable. It makes my heart so bad and brings about such a weakness I could not even leave my house this summer at all without feeling like I would die.

I always feel fatigued and my muscles (especially my legs) are weak, walking up stairs leaves me completely out of breath. Waking in the morning is awful.

In addition to the orthostatic intolerance, I’m now experiencing what I can only identify as chronic fatigue. All I want to do is lie in bed, physically I am a wreck, I have no strength left at all. Even getting out of bed shoots my heart rate up. Even when my heart rate is low, I feel weak and awful. Just walking is a chore.

Since this all started, I’ve tried numerous things including weaning off thyroid meds totally and letting my levels plummet and then recover on their own to pre-treatment levels. I wondered if the thyroid meds were causing this, but coming off them improved nothing.

I’ve tried florinef increasing slowly up to 2 tabs at which point my sodium was high and I came off of it as it did nothing.

I’ve not had a T shot for months but all these symptoms remain and I’m basically disabled. My HRT doc, PCP, endocrinologist, cardiologist all say nothing is wrong with me (that they can find) and can’t explain why these symptoms came out of nowhere.

I recently had my catecholemines tested (24hr urine and they all were about 1/3 of lab range).

I’m desperate to find help and I’m not sure where to go from here…I went from feeling the best I have in years to being disabled beyond anything I could imagine, I can’t even work.

So…if anyone has any idea why this may have happened and what I can do about it…please help!

P.S. My diet is good. I showed a moderate allergy to wheat, dairy and egg so I eliminated those foods completely months ago along with all simple carbs, sugar and caffiene.

[MetalMX]

@Figuring 1998 wrote:

Hello everyone,

I’ve seen many posters here across other boards and there seems to be some great minds here so hopefully someone might be able to assist me…

About three years ago my health took a turn for the worse. I was fatigued, relying on coffee to get me through the day and lost quite a bit of weight. I decided at this point I needed to take my health seriously so I cleaned up my diet, changed my schedule to get good sleep etc. I improved a lot but something was still wrong.

About a year ago I started HRT under the care of a doctor. First thing we identified was bad adrenal function. My blood AM cortisol was low and my saliva cortisol profile showed my level as a <1 almost all day long. I was put on HC at 25mg per day and it made a huge difference. I started to gain weight back, I was sleeping less but way more rested, no more panic attacks and fatigue...it was good.

Next we addressed my low testosterone. My levels were <300 along with low LH/FSH. I was put on T gel each day which helped some but I was getting some high estrogen side effects.

After being on both the HC and T gel for a few months we did thyroid labs because I’ve always had low thyroid symptoms. My FT4 was top of the range, FT3 bottom of the range and my reverse T3 was nearly DOUBLE the top end of the lab range! I was put on armour at first in small amounts and started supp’ing iodine, selenium, B12, etc. to try and improve conversion without any luck. After that I was switched to cytomel/armour which made a huge difference and I was feeling really good!

This summer I was feeling pretty tuned up on the HC and thyroid meds but I was still having some high E2 levels so my doc suggested trying testosterone injections.

This is where it gets bad…

After my first T injection I had an episode of tachycardia/pounding heart about 24 hours later and these symptoms persisted somewhat for days after. My doc suggested it might be the T giving a brief boost in thyroid levels and asked if I wanted to continue trying the shots. I agreed. I only did two more shots and not long after the last one I had tachycardia so bad I ended up in the ER and then admitted to the hospital for 4 days. Everyone there said they had never heard of the injections doing such a thing and also surmised it could be somehow related to thyroid function.

I was given tests for all thyroid antibodies, pituitary MRI, EKG, stress test, echocardiogram, thyroid ultrasound etc. All showed nothing strange and my thyroid labs show my levels only about 2/3 of lab range, not hyper.

After this incident I developed symptoms of orthostatic intolerance (without hypotension). My heart rate jumps rapidly upon standing or exertion. If I wake in the middle of the night to pee it will shoot up from 60 to 130 in a second and stay there for an hour sometimes. Heat is intolerable. It makes my heart so bad and brings about such a weakness I could not even leave my house this summer at all without feeling like I would die.

I always feel fatigued and my muscles (especially my legs) are weak, walking up stairs leaves me completely out of breath. Waking in the morning is awful.

In addition to the orthostatic intolerance, I’m now experiencing what I can only identify as chronic fatigue. All I want to do is lie in bed, physically I am a wreck, I have no strength left at all. Even getting out of bed shoots my heart rate up. Even when my heart rate is low, I feel weak and awful. Just walking is a chore.

Since this all started, I’ve tried numerous things including weaning off thyroid meds totally and letting my levels plummet and then recover on their own to pre-treatment levels. I wondered if the thyroid meds were causing this, but coming off them improved nothing.

I’ve tried florinef increasing slowly up to 2 tabs at which point my sodium was high and I came off of it as it did nothing.

I’ve not had a T shot for months but all these symptoms remain and I’m basically disabled. My HRT doc, PCP, endocrinologist, cardiologist all say nothing is wrong with me (that they can find) and can’t explain why these symptoms came out of nowhere.

I recently had my catecholemines tested (24hr urine and they all were about 1/3 of lab range).

I’m desperate to find help and I’m not sure where to go from here…I went from feeling the best I have in years to being disabled beyond anything I could imagine, I can’t even work.

So…if anyone has any idea why this may have happened and what I can do about it…please help!

P.S. My diet is good. I showed a moderate allergy to wheat, dairy and egg so I eliminated those foods completely months ago along with all simple carbs, sugar and caffiene.

Must have been something in the T injections that caused this to you. Bacterial or hidden infection due to contamination could be the hidden cause.

Where was the T shot injected what muscle group? What was the brand?

You need to ask the doc who administered it more details since its not like your making shit up, you we’re fine then disabled after he administered this to you. I would have drop kicked him in the nuts 😉 lawsuit is not out of the question.

After i used injectable anabolic steriods in 2008 i developed sudden massive weight/water gain, muscle loss, pounding heart (like yourself), feeling extremely weak and some similar symptoms.

I believed this could be due to hidden infection due to contamination. But i also had hashimoto’s thyroiditis which i wasn’t on any treatment and this might have made my thyroid go to crap.

If i use T Gel i begin getting sick. muscle loss, weight loss, feeling weakness, worsening fatigue and so forth….

Just letting you know my experience.

I would check your T cell count. Lymphocyte Subsets and Serum Immunoglobulins. This might reveal something in what is going on in your immune system.

I had these done and their are some abnormalities like a weak immune system and so forth.

I highly doubt you would have developed dysautonomia from a few T injections. I would try intravenous Vitamin C if this improves your symptoms then its possible that this is infection related.

Are you regular bloods normal? or even any slight abnormalities, this would give more clues.

Also re-test all your hormones especially the ones you are on Cortisol etc…

[Figuring]

Thanks for your response. I’ve done plenty of hormone retests since this all started, nothing extraordinary there. I’m back on the T gel now and have been for the last few months since this all happened.

The T shots were administered by myself, intramuscular, it was Watson brand T cypionate.

I’ll post my most recent CBC, nothing strange that I see at first glance:

CBC With Differential/Platelet
WBC 8.5 x10E3/uL 4.0-10.5 01
RBC 4.71 x10E6/uL 4.10-5.60 01
Hemoglobin 14.9 g/dL 12.5-17.0 01
Hematocrit 45.6 % 36.0-50.0 01
MCV 97 fL 80-98 01
MCH 31.7 pg 27.0-34.0 01
MCHC 32.7 g/dL 32.0-36.0 01
RDW 13.9 % 11.7-15.0 01
Platelets 188 x10E3/uL 140-415 01
Neutrophils 58 % 40-74 01
Lymphs 35 % 14-46 01
Monocytes 6 % 4-13 01
Eos 1 % 0-7 01
Basos 0 % 0-3 01
Neutrophils (Absolute) 4.9 x10E3/uL 1.8-7.8 01
Lymphs (Absolute) 3.0 x10E3/uL 0.7-4.5 01
Monocytes(Absolute) 0.5 x10E3/uL 0.1-1.0 01
Eos (Absolute) 0.1 x10E3/uL 0.0-0.4 01
Baso (Absolute) 0.0 x10E3/uL 0.0-0.2 01

If this is something viral/bacterial in nature, what would I do to fight it off? I’ve wondered the same thing myself more than once.

All these doctors are basically like, “well it looks like you have some form of dysautonomia, this can happen quickly and there’s no real cause/cure that we know of”.

The only legitimate reason I can see is that in the process of improving my thyroid and T levels something or some stressor in my body triggered this. I’ve read people who develop similar things after a stressful experience or illness…I’m not sure where to go from here.

[Figuring]

I also wonder if by adding in the cytomel and improving my good thyroid levels I sort of “unlocked” something my body was trying to protect me from. Such a high reverse T3 level certainly seems to indicate a pretty severe metabolic imbalance.

[MetalMX]

@Figuring 2004 wrote:

I also wonder if by adding in the cytomel and improving my good thyroid levels I sort of “unlocked” something my body was trying to protect me from. Such a high reverse T3 level certainly seems to indicate a pretty severe metabolic imbalance.

High Reverse T3 is pretty much wilsons if you have chronic fatigue.

What is your daily temperature?

Also have you checked for Vitamin B12 and Folate?

I would try methylcobalamin and Folinic Acid the active forms of each if you do plan on using them.

Their is a Optimal Nutritional Evaluation at genova diagnostics which would be very very useful for yourself i did this test also for around 500-600 but it was well well worth it very indepth about 20-30 pages long gives you information on your whole biochemistry if you can read it correctly.

Their is also metametrix.com

http://www.metametrix.com/content/DirectoryOfServices/0090ionindividualoptimalnutritionprofiles-bloodurine

This one is even more comprehensive. Check out sample report and you’ll see what you’d be getting

B12 can possibly cause these issues. Iron studies would also be helpful.

Thyroid antibodies also.

[Figuring]

@MetalMX 2005 wrote:

High Reverse T3 is pretty much wilsons if you have chronic fatigue.

What is your daily temperature?

Also have you checked for Vitamin B12 and Folate?

I would try methylcobalamin and Folinic Acid the active forms of each if you do plan on using them.

Their is a Optimal Nutritional Evaluation at genova diagnostics which would be very very useful for yourself i did this test also for around 500-600 but it was well well worth it very indepth about 20-30 pages long gives you information on your whole biochemistry if you can read it correctly.

Their is also metametrix.com

http://www.metametrix.com/content/DirectoryOfServices/0090ionindividualoptimalnutritionprofiles-bloodurine

This one is even more comprehensive. Check out sample report and you’ll see what you’d be getting

B12 can possibly cause these issues. Iron studies would also be helpful.

Thyroid antibodies also.

Thanks for your response.

My reverse T3 WAS high before all this started. After all hell broke loose with these new symptoms the Cytomel had already corrected that problem. My RT3 was below 200 down from nearly 600 at that point.

My B12 and folate were OK last I checked. My b12 was about 600, I supplement now with 5000 sublingual methyl B12 every day.

My daily temp when all this happened was 98.6-98.7 now it is back down around 98.2 because I’ve backed off my thyroid meds to see if they were affecting my heart.

Before I had these latest symptoms my last ferritin was high, around 250. My doc did a full iron panel to rule out hemachromatosis. Iron panel looked normal. When all these symptoms started up we did ferritin again and an iron panel. Ferritin had dropped to 101 and iron levels were all in normal ranges.

As I posted in my OP, I did have tests for all thyroid antibodies, graves, hashi’s etc. when I was in the hospital. They were all negative.

Thanks for you response…this is so damn frustrating.

[Shaolin]

I ve been there too mate. Had many forms of dysautonomia.
First when i had depleted my testosterone levels with finasteride and increased my noradrenaline levels with super sets in the gym. It send me to sympathetic type of overtraining and each time i got out of bed i had 3 times the normal pulse rate.

That lasted for around 8 months i was bedridden. Terrible

Then i took a bunch of drus like cortisone, cipro and got much worse. In my process of recovery i had to improvise so took large amounts of coffee which offcourse woke my sleeping HPA axis but put me in a state of complete dysautonomia and autonomic nervous system overreaction, i guess it was the time when i hit really low levels of both epinephrine and norepinephrine because when i was stading out of bed i couldnt hear my heart beat or pulse rate it was soooo weak and i felt like dying. I stayed in bed another 6 months to get better and slowly walked myself out of this problem somehow.

Out of my head what has happened to you is this.

Not only did you supplement with normal to large amounts of thyroid meds for your 25mg of cortisol to withstand but you added T shots (why??) which pull up your metabolism the 2nd 3d day so much that 25mg of cortisol are not enough to bring it down/or actually support it aswell with your heart function. Thats why you got those symptoms. A T injection potentially spiked the cortisol and used it all up, i have done that to myself too and know first hand. I took a T booster when my HPA axis was completely dyfucntional and was working at say 10-20%. I then started to feel energetic for the first days but each time i went to exercise my heart rate would go mad and it wouldnt stop – plus i would get fatigued in 20 minutes despite the strength derived from the temporary testosterone boost.

All those hormones work perfectly tuned in a healthy body. You tried to outsmart it but instead you put on too much strain on your adrenals.

Dr. M can comment more scientifically on this, but i think that is the basis of your problem.
Dont know or cant say exactly what happened to your catecholamines after that

[MetalMX]

Dude your symptoms scream low cortisol. You said so yourself your AM cortisol was <1. This could all be caused by low cortisol particularly if you are on thyroid meds.

I don’t think theirs such a thing as CFS. Its just undiagnosed illness. e.g. thyroid/adrenal problems, hidden infections, methylation abnormalities – which supplements could be used for.

[Shaolin]

CFS is too complicated to explain here. Adrenal fatigue doesnt exist, its something like HPA dysfunction/suppression. Very common in amphetamine/cocaine abusers, higly stressed individuals mentally or physically and in some others who have environmental chemical exposures and so on.
CFS is a neuro-immune disease, the immune nature is so much affected that a person may get HIV like infections in the process. CFS patients have normal or nearly normal cortisol levels, its a central HPA dysfunction rather than an adrenal output problem. CFS patients have altered serotonin metabolism and really exhausted noradrenaline and dopamine stores. Very complex disease. Treatment is mostly antivirals/immune stimulants- at least those help the most, exercise and cognitive behavioral therapy along with some neuropeptides. Hormones dont help much really- unless proven that the individual has lack of those or of their underlying mechanisms controlling their production. TRH is or could be an exception by means of restoring some of the neurotransmitter levels. Still problems in CFS are too many to explain

[MetalMX]

@Shaolin 2212 wrote:

CFS is too complicated to explain here. Adrenal fatigue doesnt exist, its something like HPA dysfunction/suppression. Very common in amphetamine/cocaine abusers, higly stressed individuals mentally or physically and in some others who have environmental chemical exposures and so on.
CFS is a neuro-immune disease, the immune nature is so much affected that a person may get HIV like infections in the process. CFS patients have normal or nearly normal cortisol levels, its a central HPA dysfunction rather than an adrenal output problem. CFS patients have altered serotonin metabolism and really exhausted noradrenaline and dopamine stores. Very complex disease. Treatment is mostly antivirals/immune stimulants- at least those help the most, exercise and cognitive behavioral therapy along with some neuropeptides. Hormones dont help much really- unless proven that the individual has lack of those or of their underlying mechanisms controlling their production. TRH is or could be an exception by means of restoring some of the neurotransmitter levels. Still problems in CFS are too many to explain

I was “diagnosed” as having CFS.

Then i found out i had hashimoto’s. Started thyroid, felt great then was crashing within days as i am now. Now found out i have adrenal insufficiency pre-existing which was hidden due to low thyroid all these years. Once i am on cortisol also i will be great and get my life back.

It all depends if you have true CFS or something mimicking it such as the above situation with myself.

I also think their are some people with normal blood cortisol levels yet they are not responding to the cortisol in their body something similar to ACTH resistance and cortisol replacement would make these peoples lives normal again.

[Figuring]

Here’s where I am now.

I didn’t fully explain it in my original posts but one of the first things I did was to try increasing my cortisol dosing. I tried doses much higher than 25mg without result. I also tried medrol also with no improvement up to 6mg per day since it’s longer lasting.

I have since stopped testosterone and my levels have recovered to my previously crappy T levels. Even raising my testosterone with hCG (which would boost my own production) resulted in the same racing heart, shaky hands, heat intolerance and fatigue.

I did have some new thyroid antibodies labs run and they do show that my grave’s antibodies are higher than average but not out of range, but my thyroid levels have never been high. My doctor says to just keep an eye on them. My TSI was 90 (range <130) No hashi's antibodies. My most recent ferritin was 91.

My latest thyroid results are here:

TSH: .8
FreeT4: 1.50 (.82-1.77)
FreeT3: 3.3 (2.0-4.4)
ReverseT3: 459 (90-350) High

So once again I have a crazy RT3 result. It’s no wonder my body temps have dropped and I’m suffering from constipation.

After seeing that my doc encouraged me to try a small dose of cytomel (5mcg) to try and improve things. I did and for the first week I actually did notice a little more energy and better mood. A little improvement on the orthostatic issue as well.

Then I increased to 10mcg and my heart started pounding away, I felt nauseous and weak. I doubt I went hyper on 10mcg (temps were still very low at this point) so it again points to adrenals however I was on 30mg of HC at this point. No idea what the hell causes this, I’ve tried florinef before too. Very similar problem I have on testosterone.

Here’s something I thought was rather strange. I did a urinary 24hours cortisol test while on 25mg of HC. The result came back very high 96 (0-50) so it was nearly double the top of the range. I was like, wow-maybe my cortisol is too high? I tapered off the HC over 3 weeks and ran the test again and my result was 20 (0-50).

From what I’ve read urinary cortisol testing can be inaccurate on HC because once it saturates the transcortin the rest will just be urinated out and falsley elevate free cortisol. However this is supposed to be more likely if one is taking large doses of HC at one dose. I was taking 10, 5, 5, 5 so that doesn’t seem large at all.

It makes me wonder if these problems are in fact adrenal and for some reason I’m just pissing out HC without utilizing it? Strange theory I know, but that’s where I’m at now.

Started seeing a new doc too…he has no suggestions on what’s happening. I’m pretty desperate. Just coming off the T and giving things time has helped a lot but I’m really curious about this cortisol thing…

[misseschris]

Figuring, interesting you should mention urinating your cortisol out and not using it. I just read- today- in the latest Townsend Letter- Examiner of Alternative Medicine- an article about steroid and other hormone hyperexcretion. The article is by Dr. Jonathan Wright MD and is originally referring to estrogen hyperexcretion, but also states that he occasionally sees this same problem with testosterone and cortisol. I know you can read the articles online if you can’t find the magazine- January 2010 issue. The article is titled: Bioidentical Hormone Replacement Therapy (BHRT) Common Issues and Solutions, starting on page 56.

-Chris

[Figuring]

@misseschris 2445 wrote:

Figuring, interesting you should mention urinating your cortisol out and not using it. I just read- today- in the latest Townsend Letter- Examiner of Alternative Medicine- an article about steroid and other hormone hyperexcretion. The article is by Dr. Jonathan Wright MD and is originally referring to estrogen hyperexcretion, but also states that he occasionally sees this same problem with testosterone and cortisol. I know you can read the articles online if you can’t find the magazine- January 2010 issue. The article is titled: Bioidentical Hormone Replacement Therapy (BHRT) Common Issues and Solutions, starting on page 56.

-Chris

Thanks for the suggestion…I looked on the website and saw that article title listed but didn’t see an online version. Any link?

Or maybe you could briefly sum up what was said?

[Figuring]

Oh, I also realize I had labs from a Rhein’s test as well. This is also on just 25mg of HC…seems really high.

Tetrahydrocortisone (THE) 6299 (1365-5788) High
Cortisol 208 (35-168) High
Tetrahydrocortisol (THF) 4543 (942-2800) High -really high?

I’m not sure if those are normal results or not for someone on HC.

[misseschris]

Don’t have the article in front of me right now, but Dr. Wright recommends cobalt to fix the problem. Will check out the article a bit more later and be back!

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