Sharing a study I'm participating in for fatigue

Posted by inmetta @inmetta, Sep 9, 2023

Sharing- I'm participating in a study led by Mt Sanai NYC Post Covid Dept looking at fatigue and endocrine dysfunction. It involves a blood draw at LabCorp to check the endocrine function and a functional survey. Im told if the Drs find an issue with your labs, you continue with draw every 3 months and the labs are explained to you and the Drs will discuss with your providers. The post Covid website is also a great source for information as they seem more independent imho

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

This was on national NBC news today with Lester Holt. Glad they are bringing awareness to Long COVID.

Link to video here:
https://www.google.com/amp/s/www.nbcnews.com/news/amp/rcna116871

The medical article is here, unfortunately it requires a subscription:
https://www.nature.com/articles/s41586-023-06651-y

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I am in this study as well. I just got my first set of labs back--mostly normal but slightly elevated cortisol and sex horomone biding globulin. Did you get any results yet?

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My husband and I just had our initial blood work for this yesterday. Now waiting for the results to see if we qualify to continue in the study.

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@burtem

I am in this study as well. I just got my first set of labs back--mostly normal but slightly elevated cortisol and sex horomone biding globulin. Did you get any results yet?

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Not yet, they said in a few weeks.

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@burtem

I am in this study as well. I just got my first set of labs back--mostly normal but slightly elevated cortisol and sex horomone biding globulin. Did you get any results yet?

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Interesting, I am not in a study, but have many many blood tests. Like you, one just came back also with elevated cortisol and sex binding globulin! I was going to ask my Gynecologist what sex binding Globulin is. The study results that just came out in the news said more people in the study with long Covid had LOW cortisol, explaining the fatigue. But I have unbelievable fatigue with HIGH cortisol. One of my friends a nurse said that overly high cortisol can make you tired too, because it exhausts your body being in fight of flight mode much of the time, induced by high cortisol.
I'm going to ask one of my many doctors I have now to re do my covid immunity test of a year ago when my immunity read really high, also want the Epstein Barr Antibody test, both also markers more people with long covid in the study had. At least if we had a number of the markers it would show we have something provably going on. I also had some other tests showing possible autoimmune diseases if you have a positive on those. Almost 2 years for me now,! I have cardiac Arrhythmia, terrible GI symptoms, chronic fatigue, now have nerve symptoms that came after I had my thyroid removed which my cardiologist and Endocrinologist agreed would at minimum fix my thyroid problem and get rid of my heart arrhythmia, but NO it did not, and now I also have the nerve symptoms in addition. Miracle you got in study, I tried but I didn't have a positive PCR test so was rejected, so much for using the recommended home tests!

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@gbw

Interesting, I am not in a study, but have many many blood tests. Like you, one just came back also with elevated cortisol and sex binding globulin! I was going to ask my Gynecologist what sex binding Globulin is. The study results that just came out in the news said more people in the study with long Covid had LOW cortisol, explaining the fatigue. But I have unbelievable fatigue with HIGH cortisol. One of my friends a nurse said that overly high cortisol can make you tired too, because it exhausts your body being in fight of flight mode much of the time, induced by high cortisol.
I'm going to ask one of my many doctors I have now to re do my covid immunity test of a year ago when my immunity read really high, also want the Epstein Barr Antibody test, both also markers more people with long covid in the study had. At least if we had a number of the markers it would show we have something provably going on. I also had some other tests showing possible autoimmune diseases if you have a positive on those. Almost 2 years for me now,! I have cardiac Arrhythmia, terrible GI symptoms, chronic fatigue, now have nerve symptoms that came after I had my thyroid removed which my cardiologist and Endocrinologist agreed would at minimum fix my thyroid problem and get rid of my heart arrhythmia, but NO it did not, and now I also have the nerve symptoms in addition. Miracle you got in study, I tried but I didn't have a positive PCR test so was rejected, so much for using the recommended home tests!

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Wow. So sorry you are going through this. It's so frustrating and exhausting to keep up with all of the information out there. I've had many blood tests and my cortisol is very high and continued to rise despite all the crazy concoctions I tried (functional medicine). I'm finally stopping this crazy train and following one course for now which is tx for central sensitization and any real dysfunction my docs find. No more rabbit holes, crazy supplements, costly testing... I wish you the best : )

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You are so right about the Rabbit Hole and all the concoctions, meds etc. I have 4 western medicine doctors, and functional medicine and Chinese medicine doctors. What's helped me the most is acupuncture and Chinese medicine diet that helps with the bowel issues but I don't stick to it 100%, its too restrictive. I've spent $30,000 in 2 years out of pocket for doctors who don't take insurance and so many supplements and meds etc. None of it ver effective. I'll probably get audited for claiming so many medical expenses on my taxes! I recently discovered Dr Boon Lin, a cardiologist in London who treats a lot of long covid people. He has some great interviews and videos on line. He has great ideas and insight, and its not med focused, its all common sense things you can do yourself to reset your metabolism in ways that are pertinent to long covid. The things he recommends really calm me down, because like all of us I get depressed and desperate to find solutions. Each specialist only focuses on their part of your body without considering this is a systemic problem driving all of the symptoms. But as you said I haven't had that much luck even with Naturopath doctors as they give you so many remedies its too much for your system with this particular virus aftermath. I'm Sorry I was persuaded to remove my thyroid, which was pretty drastic and it did not help, in fact for now added another big symptom, which will hopefully go away. I'll look up tx for central sensitization, sounds like its in line with Dr Lin's theory about recalibrating our Autonomic and Sympathetic systems to work together as they are supposed to. Best of luck to you, if something works please let me and others know. Thanks

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@inmetta

Wow. So sorry you are going through this. It's so frustrating and exhausting to keep up with all of the information out there. I've had many blood tests and my cortisol is very high and continued to rise despite all the crazy concoctions I tried (functional medicine). I'm finally stopping this crazy train and following one course for now which is tx for central sensitization and any real dysfunction my docs find. No more rabbit holes, crazy supplements, costly testing... I wish you the best : )

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PS I was also diagnosed with central sensitization, did some short term hypno therapy for it which helped some, but the thyroid removal brought all my symptoms back. What is TX for it? I also think the central sensitization is a symptom rather than a cause, but if anything helps with it would be great as its a bad symptom. I'm beginning to understand this virus somehow causes a dysregulation of our 2 main regulatory nervous systems in our body that affect all organs and functions. I actually thought this right from the beginning but could get no care for that. The theory of my Cardiologist and Endocrinologist removing my thyroid was that it was a dis functional problem thyroid that was affecting many metabolic systems. But that was not IT. I think its the Nervous systems not working properly, this is why I was attracted to Dr Boon Lin, someone on this site mentioned he really helped him, so I looked him up.

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This is all very interesting to me. I first tested positive for covid 0/2021, it hit me really hard. I did not go to the hospital. I tested positive again 01/22 - so random. I my cortisol levels have tested low, my kidneys are also testing at a 3, sodium is always low. There is so much that comes with long covid I could go on for hours. Did anyone else start having Seizures?
I am now having major issues with GI track that is a complete mess. Let me start off by saying: I am not dehydrated, I drink a lot of water, even fancy water with PH balance. I don't drink soda's. I am still struggling with to find a workout that I can complete and not me completely gassed the rest of the day and/or the next day. I do move, walk, stationary bike, use light weights and that like, I have a healthy diet. My Dr. advised me to cut out a few things out of my diet and to take some laxatives and the such.
I cut dairy, and Gluten, I added prunes - yup, I did, also laxative powder I add to my coffee. I also take a probiotic, also suggested by my doctor. I was very hopeful and still am, that the right combination is out there. so far with the changes I feel a tic better and am still having that same issue. The bloating is really uncomfortable. It's been going on most of this year. I don't remember much, but I can't forget this one.
I wish you all healthy days ahead, some rest & energy
If this too is a jumbled mess - it's brought to you by long covid

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@whoesonfirst

This is all very interesting to me. I first tested positive for covid 0/2021, it hit me really hard. I did not go to the hospital. I tested positive again 01/22 - so random. I my cortisol levels have tested low, my kidneys are also testing at a 3, sodium is always low. There is so much that comes with long covid I could go on for hours. Did anyone else start having Seizures?
I am now having major issues with GI track that is a complete mess. Let me start off by saying: I am not dehydrated, I drink a lot of water, even fancy water with PH balance. I don't drink soda's. I am still struggling with to find a workout that I can complete and not me completely gassed the rest of the day and/or the next day. I do move, walk, stationary bike, use light weights and that like, I have a healthy diet. My Dr. advised me to cut out a few things out of my diet and to take some laxatives and the such.
I cut dairy, and Gluten, I added prunes - yup, I did, also laxative powder I add to my coffee. I also take a probiotic, also suggested by my doctor. I was very hopeful and still am, that the right combination is out there. so far with the changes I feel a tic better and am still having that same issue. The bloating is really uncomfortable. It's been going on most of this year. I don't remember much, but I can't forget this one.
I wish you all healthy days ahead, some rest & energy
If this too is a jumbled mess - it's brought to you by long covid

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I can identify with a lot of what you mention...esp about GI issues. So I understand long covid people will show low cortisol which contributes to fatigue. Is there something to treat these low levels? What about the sodium and low kidney function?

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