New Here - Lyme Disease/Low T

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1Draw

Member
My doctor did not discuss multiple injections per week, he initially wanted me to inject every 2 weeks, but as I learned here, that is not best. I guess I am not clear on SHBG, is that one test? My doctor did not order that one. I don't sleep well because most nights I have body aches, and my arms tingle. I wake up many times during the night. Feel like I got hit by a truck most mornings. Have quite a bit of muscle fatigue during the day. Sometimes my biceps feel like I have been constantly lifting weights, then lots of fatigue. Along with brain fog, I have learned that these are common lyme symptoms. Seem to be too severe for just low T?

Petemax I would definitely follow Coastwatchers advice and get a full thyroid panel done. As he noted, TSH means little to knowledgeable thyroid doctor's and many do not include it in their testing. Lyme's disease is a cause if high reverse T3. See this link https://stopthethyroidmadness.com/reverse-t3/.

I know because my Reverse T3 was 28.1 after having flu/sinus infection in January. My symptoms were IDENTICAL to yours. I'm now on T3 med to get it back in line. Have a feeling it has been elevated for some time and the infection really caused a spike. Optimal RT3 should be less than 15.

The symptoms of low testosterone and Hypothyroidism are very much identical. Here is good explanation by Dr. Westin Childs https://www.restartmed.com/thyroid-symptoms-men/
 
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PeteMax

New Member
Petemax I would definitely follow Coastwatchers advice and get a full thyroid panel done. As he noted, TSH means little to knowledgeable thyroid doctor's and many do not include it in their testing. Lyme's disease is a cause if high reverse T3. See this link https://stopthethyroidmadness.com/reverse-t3/.

I know because my Reverse T3 was 28.1 after having flu/sinus infection in January. My symptoms were IDENTICAL to yours. I'm now on T3 med to get it back in line. Have a feeling it has been elevated for some time and the infection really caused a spike. Optimal RT3 should be less than 15.

The symptoms of low testosterone and Hypothyroidism are very much identical. Here is good explanation by Dr. Westin Childs https://www.restartmed.com/thyroid-symptoms-men/

Very interesting links, my thyroid test always comes back normal, so my doctor has never ordered a full thyroid panel. How do I find a doctor that understands all of this? My primary has no clue, my urologist is just looking at my T levels, my lyme dr just wants to give me antibiotics, holistic drs just want me to take supplements. Very frustrating! Can anyone recommend a doctor in the northeast? I live in southern NH. I would be willing to go out of my insurance network.
 

OMI100

Member
I had/have Lyme. First positive test n 1998. I had intermittent fatigue,anxiety,and some pain but not to bad. My hormones seemed fine had a normal life until 2007 I crash dieted and over trained and that's when my hormones took a shit. I've never fully recovered from that. But my biggest hurdle seemed to be low cortisol.
What protocol / treatment were you on, or on for Lyme?
 

Ranger100

New Member
Hello PeteMax,

It's a hard question, one of those chicken and egg questions. In 2011 I had serious medical issues. Right around that time I noticed my "T" seemed to be falling off the charts, I was tested but in the old guy "normal" range...

But I had around that time 3 tick bites. At the time I also was diagnosed with Celiac disease, Narcolepsy, Obstructive Sleep Apnea. Note: I was not diagnosed with Lyme until 2015 when I became very sick and went to a Lyme Specialist Dr.

2 years of heavy antibiotics 200mg Doxy am, 500mg Azritimycyn noon , 200mg Doxy pm, plus B12 injections for the memory/mental cognitive issues...

Got over the Lyme's and was then "diagnosed" with a serious cancer issue.... 8+ weeks of simultaneous radiation and chemotherapy. I'm clear by the grace and healing of God - thankfully! But that treatment knocked out the last of my remaining testosterone.

Then noticed major fatigue, ED, weight/fat, vision problems (major Dry Eye problems), weakness and etc.

I started 50mg/day of Androgel for 1 month (lab tests lower than when I started Androgel) I'm now75mg/day and will test again in a month.... but I think I'll need to be around 150mg/day to make a difference....

I think Lyme's can weaken your system so you can come down with all kinds of illnesses. Lyme's is a very serious illness and nothing to fool around with...

Why are you having problems with Antibiotics? I took them shortly after meals and supplemented with probiotices 4-5 hours later.

I hope this helps,

Sincerely,
Ranger100


PS: I would love to hear from anyone dealing with Dry Eye that was helped with "T" replacement therapy....or "T" cream for your eye lids as I've read about....
 

1Draw

Member
Very interesting links, my thyroid test always comes back normal, so my doctor has never ordered a full thyroid panel. How do I find a doctor that understands all of this? My primary has no clue, my urologist is just looking at my T levels, my lyme dr just wants to give me antibiotics, holistic drs just want me to take supplements. Very frustrating! Can anyone recommend a doctor in the northeast? I live in southern NH. I would be willing to go out of my insurance network.

Defy Medical in Tampa Fl is where many members here get their medical advice, meds, refills, etc. I have been with them since 2015 and very very satisfied after trying my PCP, Endocrinologist, another T treatment center with no positive results.

You can look here: https://www.defymedical.com/ . Cost is higher at first due to blood test and original consult but ongoing my cost is about $1,000 a year so, its affordable and they know what they are doing when it comes to solving the hormone puzzle.

I would schedule my first consult with either Dr. Saya or Dr. Calkins due to your complex issues. You will need current labs or, order them from Defy. You can ask about a script if your insurance will cover. Your PSA is elevated so do not ejaculate 72 hours before blood test to get a true reading. If your multivitamin contains biotin, cease taking it 72 hours before since biotin can alter blood test results.

They are very successful with their telemedicine concept as evidenced by their number of staff and satisfied patients.

Keep us updated Pete and good luck!
 

Charliebizz

Well-Known Member
What protocol / treatment were you on, or on for Lyme?
i was working with an LLmd for a while around 6 months of aintibiotics. Tried a bunch of them at varying doses and also went for iv aintibiotics. But it only lasted 2 days. I got phlebitis from the iv and had to get the mid line pulled. I never really had that bad of symptoms. But after I screwed my hormones up we were looking at everything. The antibiotics completely did my gut health in and that's another big issue I need to fix.
 

OMI100

Member
i was working with an LLmd for a while around 6 months of aintibiotics. Tried a bunch of them at varying doses and also went for iv aintibiotics. But it only lasted 2 days. I got phlebitis from the iv and had to get the mid line pulled. I never really had that bad of symptoms. But after I screwed my hormones up we were looking at everything. The antibiotics completely did my gut health in and that's another big issue I need to fix.

FWIW
The DR that saw my Daughter would have used a PIC line but she lives in Atlanta and he is mobile Alabama.
His first drug of choice was Minocycline 200 mg once a day.
The Daughter had gut issues and he went to his #2 drug.
Switched to clarithromycin 500mg once a day along with Diflucan 200mg once a week.
She was on that for a year.
It was a slow slog and she slowly improved.
When she first saw him she could not work, much less get out of bed.
After a year on antibiotics she was at least able to work.
DR said it could be up to 2 years to completely get over the Lyme infection and the damage that it had done.
She is at the 85%-95% pre-Lyme physical condition now.
She still has issues, but they are minor considering what her initial condition was.
 

PeteMax

New Member
Hi 1Draw, I had a full thyroid panel done and everything was in the normal range except my reverse T3 was high at 29.1. Just like you said! My TSH was 1.55 (toward the low normal range). So perhaps my symptoms are thyroid related? My PCP did not order this lab, I went to one on my own. Should I ask my PCP for a referral to an endocrinologist for treatment? I as starting to question if I should be on TRT. Can a high reverse T3 cause low T?
 

ratbag

Member
Low thyroid can affect T levels but more importantly the symptoms of Low T and Low Thyroid are very similar. With high RT3 your T3 is pooling which usually means you have low ferritin or cortisol. Those will have to be checked next in order to start ruling things out.
 

1Draw

Member
Hi 1Draw, I had a full thyroid panel done and everything was in the normal range except my reverse T3 was high at 29.1. Just like you said! My TSH was 1.55 (toward the low normal range). So perhaps my symptoms are thyroid related? My PCP did not order this lab, I went to one on my own. Should I ask my PCP for a referral to an endocrinologist for treatment? I as starting to question if I should be on TRT. Can a high reverse T3 cause low T?

Petemax an endocrinologist is NOT who you want to see. The majority have no clue on how to treat low T and high Reverse t3. As I mentioned in previous post, call Defy Medical and get started with them. Dr. Saya and Dr. Calkins both are well trained to think outside of box of the AMA guidelines on treating low T and I would almost bet they have experience with Lymne's disease. With a TSH of 1.55 the med school trained MD's are going to say your Thyroid is normal, give you prescriptions that treat your symptoms or tell you to exercise more and send you on your way.

I have been on T therapy for 3 years now and am currently injecting T Cypionate with grapeseed oil 30mg EOD and also taking 5mg Liothyronine 3-4x day since that was diagnosed on 2/28 and am beginning to feel better. I have even started going back to the gym which is promising considering how I felt before the high Reverse T3 was diagnosed. You will get there once you get the proper guidance for your low T and Lyme's disease.

I believe Dr. Saya mentioned in a post that he has treated an Endocrinologist who was being treated by his peers with no positive results. This says a lot about his experience.

Good luck and keep us posted!
 

Checkdis

Active Member
Petemax an endocrinologist is NOT who you want to see. The majority have no clue on how to treat low T and high Reverse t3. As I mentioned in previous post, call Defy Medical and get started with them. Dr. Saya and Dr. Calkins both are well trained to think outside of box of the AMA guidelines on treating low T and I would almost bet they have experience with Lymne's disease. With a TSH of 1.55 the med school trained MD's are going to say your Thyroid is normal, give you prescriptions that treat your symptoms or tell you to exercise more and send you on your way.

I have been on T therapy for 3 years now and am currently injecting T Cypionate with grapeseed oil 30mg EOD and also taking 5mg Liothyronine 3-4x day since that was diagnosed on 2/28 and am beginning to feel better. I have even started going back to the gym which is promising considering how I felt before the high Reverse T3 was diagnosed. You will get there once you get the proper guidance for your low T and Lyme's disease.

I believe Dr. Saya mentioned in a post that he has treated an Endocrinologist who was being treated by his peers with no positive results. This says a lot about his experience.

Good luck and keep us posted!

My doctor will not prescribe me Liothyronine (Cytomel) but thinks my RT3 could be changed environmentally.

But correct me if I am wrong, my friend who is a pharmacist indicated to me that once you start taking a prescription drug like Cytomel, you are on it for life? When some people may want to come or TRT one day trying to restart their system, will have to remain on Cytomel if this is true.
 

OMI100

Member
Hi 1Draw, I had a full thyroid panel done and everything was in the normal range except my reverse T3 was high at 29.1. Just like you said! My TSH was 1.55 (toward the low normal range). So perhaps my symptoms are thyroid related? My PCP did not order this lab, I went to one on my own. Should I ask my PCP for a referral to an endocrinologist for treatment? I as starting to question if I should be on TRT. Can a high reverse T3 cause low T?
There is a WORLD of difference between being WITHIN range and OPTIMAL. If your range is 5 to 15 and you test at 6, you are WITHIN range, but if the majority of healthy people test at 13, and that is statistically at the OPTIMAL level where most people feel their best, you are most likely going to feel like @#$%.
http://www.tiredthyroid.com/optimal-labs.html
http://www.tiredthyroid.com/what-labs.html
http://www.tiredthyroid.com/rt3-4.html
 
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OMI100

Member
My doctor will not prescribe me Liothyronine (Cytomel) but thinks my RT3 could be changed environmentally.

But correct me if I am wrong, my friend who is a pharmacist indicated to me that once you start taking a prescription drug like Cytomel, you are on it for life? When some people may want to come or TRT one day trying to restart their system, will have to remain on Cytomel if this is true.
Here is something to look into:
http://www.tiredthyroid.com/rt3-4.html
 
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