Ended up in ER last month

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cheters23

Member
Ok new update. I got blood results back for testing of the pheochromocytoma and those all came back in range. I just received back the urine test results but they are saying something a little different. My urine metanephrine was 215(High) range (58-203).

I message my GP about this and he said my bloods came back normal so I can't have Pheochromocytoma. HE starting telling me he has been in this field for 35 years and flexing is credentials on me. I am demanding I get a MRI done to rule it out because all of my symptoms I am having and they are becoming more frequent. He was saying this tumor is really rare and don't need to do any imaging to test for it. I am getting really pissed at my GP at this point because he is not experiencing my symptoms.

Also, I just started Metoprolol last week and I was fine on it the first few days, but last 3 days have been a nightmare on it. I have been extremely dizzy on it and a couple hours after taking it my BP spikes to 160/90 for 4-5 hours, and it is giving me crazy acid reflux in my throat. I looked up pheo and it says you shouldn't take any beta blockers because it can cause an Hypertensive crisis. I know a beta blocker is supposed to lower BP, but for some reason it was spiking mine and I really felt like death(not even being hyperbolic). I have been spending the night at my girlfriends house last couple night just incase I needed to goto the ER because I have felt so horrible and worried about the blood pressure.

The NP called me earlier and said my echo came back normal. So this is why I am trying to demand an MRI to see if I have this tumor.

Any suggestions?
 
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Fortunate

Well-Known Member
Unfortunately, I have to agree with your physician. The tumor is extremely rare and your labs would have been abnormal. I mentioned thyroid above, but I don't think you posted anything about it. Have you had a full thyroid panel? There are various reasons that can cause acute thyrotoxicosis, including Hashimoto's or a transient thyroiditis from a virus.

It must be really frustrating, but you are wise to stick with your GP for now while you keep digging for answers. Is there harm getting an MRI? Absolutely not. There's no radiation with MRI. But, it is not likely to give you an answer.

At some point, you may want to see a cardiologist with a fellowship in electrophysiology.
 

cheters23

Member
Unfortunately, I have to agree with your physician. The tumor is extremely rare and your labs would have been abnormal. I mentioned thyroid above, but I don't think you posted anything about it. Have you had a full thyroid panel? There are various reasons that can cause acute thyrotoxicosis, including Hashimoto's or a transient thyroiditis from a virus.

It must be really frustrating, but you are wise to stick with your GP for now while you keep digging for answers. Is there harm getting an MRI? Absolutely not. There's no radiation with MRI. But, it is not likely to give you an answer.

At some point, you may want to see a cardiologist with a fellowship in electrophysiology.
Well the urine test was elevated. I find it weird that a beta blocker raised my BP when that medication is supposed to lower it. I read that people with Pheo should not take a beta blocker because it can cause a hypertensive crisis. I am not going to take this beta blocker again until I know for sure.

I am a patient of Defy and just had labs done yesterday, so I will know my levels again soon for thyroid. I am also on cytomel t3 20mcg/day. My last labs from Dec look like this:

TSH 3.110 uIU/mL (0.450-4.500)
Thyroxine (T4) Free, Direct, S 0.62 ng/dL (0.82-1.77)
Reverse T3, Serum 11.0 ng/dL (9.2-24.1)
Triiodothyronine (T3), Free 2.9 pg/mL (2.0-4.4)

I tested the antibodies awhile back and they were all negative.
 

Fortunate

Well-Known Member
The plot thickens. Were these labs pre-cytomel or after you've been on it for a while? Based on everything I know (which is not a lot), I am putting my money on the T3 causing all your issues. If those labs were done prior to starting it, you are most likely causing yourself thyrotoxicosis. Your T3 is totally normal as is rT3.

If those labs are pre-T3, I'd stop T3 (or figure out a way to wean down) before you do anything else. I think it will make a difference.
 

Fortunate

Well-Known Member
By the way, your urine metanephrine was barely abnormal, not what you'd see with a pheo. And, your BP can be elevated for a lot of reasons, including excessive levels of T3.
 

cheters23

Member
Those numbers are I gave you are on while I have been on cytomel. I have been on this Med since I have been with Defy going back to 06/2018. I was doing TRT since 2013 and switched to Defy in 2018. These are the numbers right before I got on cytomel. I was having symptoms of being tired, so the Rt3 was elevated and wanted to get it more into the teens.

6/4/2018 Labs( Pre Cytomel)
TSH 3.080 uIU/mL (0.450-4.500)
Thyroxine (T4) Free, Direct, S 1.03 ng/dL (0.82 - 1.77)
RT3 20.3 ng/dL (9.2-24.1)
Thyroglobulin Antibody <1.0 IU/mL (0.0 - 0.9)
Triiodothyronine, Free 3.1 pg/mL (2.0 - 4.4)
 

Fortunate

Well-Known Member
Got it. I'd still be interested in seeing what your T3 levels were a few days ago. I would also consider doing a brief trial of weaning off the cytomel to see if your symptoms change. Do you mind posting your most recent labs when they come back?
 
T

tareload

Guest
I am a patient of Defy and just had labs done yesterday, so I will know my levels again soon for thyroid. I am also on cytomel t3 20mcg/day. My last labs from Dec look like this:

TSH 3.110 uIU/mL (0.450-4.500)
Thyroxine (T4) Free, Direct, S 0.62 ng/dL (0.82-1.77)
Reverse T3, Serum 11.0 ng/dL (9.2-24.1)
Triiodothyronine (T3), Free 2.9 pg/mL (2.0-4.4)

Do you see any issues here?

I was in the exact same spot as you blood work wise, TRT + 50 mcg of T3 per day (25 mcg bid) chasing that completely moronic holy grail rT3 target that is such a bunch of crap. Adding T3 with my T4 pushed my fT4 below range and let's face it what you are taking and what your blood work indicates is not physiologic.

Went into AFIB with scary ventricular tachycardia. Long story short after 1.5 years I am still on TRT and have dropped the T3 and titrated my TSH/fT4/fT3 into physiologic range.

Many docs don't consider beta-adrenergic receptor modulation of the cardiac system that comes with TRT. Add in some T3 and its chronotropic cardiac effects and you may be asking for trouble.

Best wishes and lay off the T3 unless you (your doctor) know what you are doing.
 

cheters23

Member
Thanks. I did labs for Defy on Tuesday, so hopefully I get the results soon. I just talked to a new endo today and told her about the cytomel and asked me why I was on it, and told her I wanted my thyroid optimized. I was having tired spells during mid-afternoon and I did notice after taking the cytomel those tired spells went away, so I assumed it was doing its job. I am going to stay off cytomel and see if these symptoms disappear. She ordered a crap load of labs for me, so I will see how those turn out. Doing a blood draw and also a 24 hr urine test. Thanks for listening and helping me out.
 
T

tareload

Guest
Thanks. I did labs for Defy on Tuesday, so hopefully I get the results soon. I just talked to a new endo today and told her about the cytomel and asked me why I was on it, and told her I wanted my thyroid optimized. I was having tired spells during mid-afternoon and I did notice after taking the cytomel those tired spells went away, so I assumed it was doing its job. I am going to stay off cytomel and see if these symptoms disappear. She ordered a crap load of labs for me, so I will see how those turn out. Doing a blood draw and also a 24 hr urine test. Thanks for listening and helping me out.


Cytomel induced pseudo-hypothyrodism (fT4 below range) ain't where you want to be.

Your body tightly controls the conversion of T4 to T3 at the local tissue level (vast majority of T3 production there). Unless you have a rare deiodinase issue then taking exogenous T3 may not cause an issue initially (I did it for 3 years, felt great) or you may wake up one night in AFIB! For all the crap we give those conservative Endos about how they don't know anything, I've found it pays to listen.

Flooding your heart with more T3 than it needs + TRT + plus pre-existing issue you may not know you have is a recipe for disaster. But when it happens it gets your attention. And my apologies to the Mayo Endo I argued with about this very topic. Yes, I fell for the rT3 BS as well. Dumbass :).


1620330523936.png
 

Fortunate

Well-Known Member

Cytomel induced pseudo-hypothyrodism (fT4 below range) ain't where you want to be.

Your body tightly controls the conversion of T4 to T3 at the local tissue level (vast majority of T3 production there). Unless you have a rare deiodinase issue then taking exogenous T3 may not cause an issue initially (I did it for 3 years, felt great) or you may wake up one night in AFIB! For all the crap we give those conservative Endos about how they don't know anything, I've found it pays to listen.

Flooding your heart with more T3 than it needs + TRT + plus pre-existing issue you may not know you have is a recipe for disaster. But when it happens it gets your attention. And my apologies to the Mayo Endo I argued with about this very topic. Yes, I fell for the rT3 BS as well. Dumbass :).


View attachment 14022
Totally agree with this analysis. I very much believe it's the T3. Best of luck and listen to your endo.

Cytomel induced pseudo-hypothyrodism (fT4 below range) ain't where you want to be.

Your body tightly controls the conversion of T4 to T3 at the local tissue level (vast majority of T3 production there). Unless you have a rare deiodinase issue then taking exogenous T3 may not cause an issue initially (I did it for 3 years, felt great) or you may wake up one night in AFIB! For all the crap we give those conservative Endos about how they don't know anything, I've found it pays to listen.

Flooding your heart with more T3 than it needs + TRT + plus pre-existing issue you may not know you have is a recipe for disaster. But when it happens it gets your attention. And my apologies to the Mayo Endo I argued with about this very topic. Yes, I fell for the rT3 BS as well. Dumbass :).


View attachment 14022
 

cheters23

Member
Do you see any issues here?

I was in the exact same spot as you blood work wise, TRT + 50 mcg of T3 per day (25 mcg bid) chasing that completely moronic holy grail rT3 target that is such a bunch of crap. Adding T3 with my T4 pushed my fT4 below range and let's face it what you are taking and what your blood work indicates is not physiologic.

Went into AFIB with scary ventricular tachycardia. Long story short after 1.5 years I am still on TRT and have dropped the T3 and titrated my TSH/fT4/fT3 into physiologic range.

Many docs don't consider beta-adrenergic receptor modulation of the cardiac system that comes with TRT. Add in some T3 and its chronotropic cardiac effects and you may be asking for trouble.

Best wishes and lay off the T3 unless you (your doctor) know what you are doing.
How long have you been off the t3 meds? How are you feeling now? Do you have anymore symptoms?
 
T

tareload

Guest
How long have you been off the t3 meds? How are you feeling now? Do you have anymore symptoms?
Almost 1 year. Energy fine and no more arrhythmia which is a plus!

If I had to do it again I would try the Natesto or generic nasal gel equivalent before locking in long term with the Test ester injections. But oh well, live and learn.
 

cheters23

Member
Almost 1 year. Energy fine and no more arrhythmia which is a plus!

If I had to do it again I would try the Natesto or generic nasal gel equivalent before locking in long term with the Test ester injections. But oh well, live and learn.
I had Testicular Torsion in 2006 which I believe really messed me up. It took them almost 6 hours to diagnoses it in ER and almost lost one of them. My T was at very bottom of the range and I felt miserable and super depressed all the time. A couple weeks after being on test the depression lifted and I felt a lot better. I tried to see if i could try to come off of Test at the begging of the year doing a restart protocol, but after 2 months and feeling like a zombie and super depressed again I told myself it is not worth it.
 

cheters23

Member
Almost 1 year. Energy fine and no more arrhythmia which is a plus!

If I had to do it again I would try the Natesto or generic nasal gel equivalent before locking in long term with the Test ester injections. But oh well, live and learn.
After you stopped taking t3 how long did it take for you to notice those symptoms go away? Did you have any t3 type of withdrawals?
 

cheters23

Member
How's it going?
Not very good. Ended up in the ER again with high BP 180/95 and splitting head ache. I don't know what is going on with me. Seems like my upper body is always really hot now.

I haven't got my results back from Defy, but my new Endo ran some Thyroid test and they look pretty damn good. BTW I have not taken any t3 meds since 5/3/21 and still getting symptoms through out the day. Here are my Thyroid results:

Test Date 5/6/21
TSH Ultra Sensitive: 1.2 mIU/L (.4-4.50)
t4 Free: 1.3 ng/dL (0.8-1.8)
t3 Total: 133 ng/dL (76-181)
 

slicktop

Active Member
Not very good. Ended up in the ER again with high BP 180/95 and splitting head ache. I don't know what is going on with me. Seems like my upper body is always really hot now.

I haven't got my results back from Defy, but my new Endo ran some Thyroid test and they look pretty damn good. BTW I have not taken any t3 meds since 5/3/21 and still getting symptoms through out the day. Here are my Thyroid results:

Test Date 5/6/21
TSH Ultra Sensitive: 1.2 mIU/L (.4-4.50)
t4 Free: 1.3 ng/dL (0.8-1.8)
t3 Total: 133 ng/dL (76-181)
The T3 can take a while to get out of your system, though I'd think you'd have cleared it by now. Have you considered other blood pressure medicines? Telmisartan tend to work great for those of us on TRT. I had somewhat similar, but WAY less pronounced issues as you describe and dropped the T3 and added the telma and all issues have resolved.
 

Fortunate

Well-Known Member
I suppose it could be essential primary hypertension, but that seems unlikely. It also doesn’t explain the tachycardia events. I think your endocrinologist will be helpful in trying to figure this out. My sense is it still could be the T3.
 
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