roxie60
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Thyroid and lyme disease
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roxie60
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5:11 PM (GMT -6)
I am really struggling lately. So once again trying teach my challenged brain. I read through all the points in the stop the thyroid maddness artivle above. The part thag concerns me is it is written as the gospel but no references to support each suggestion. Also there is no ability to comment and ask such questions like where is the supporting doc. When someone is struggling they need an added measure of reassurance. Leaving out references leads me to question their credibility in giving these suggestions.
I am really struggling lately. So once again trying teach my challenged brain. I read through all the points in the stop the thyroid maddness artivle above. The part thag concerns me is it is written as the gospel but no references to support each suggestion. Also there is no ability to comment and ask such questions like where is the supporting doc. When someone is struggling they need an added measure of reassurance. Leaving out references leads me to question their credibility in giving these suggestions.
roxie60
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I have so many systems failing or functioning suboptimally. Brain, joints, heart, bladder and now thyroid. I believe each of these systems impacted are due to being misdiagnosed for ten plus years and receiving no treatment so these bugs were allowed to propagate and cause collective (cant think of the word I want, I know it starts with C) damage.
Do any of you believe your thyroid disfunction is due to lyme? If so does thyroid get better after lyme and coinfections are treated? Are late stage lyme folks destine to be on thyroid meds rest of life? My hope is my systems would improve once the bugs yad been killed.
I'm on 15mg of armour thyroid, have been on this dose 3 times, last year for 2 months. This year in april for 3 months and again now since end of august. The article above warns about being on low dosage for extended period (their low fose higher than what im on).
Do lyme drs really understand how to treat thyroid or as so many focyors are they guessing and im a guinea pig again? Cant discuss this with llmd cause she is on vacation again. I have mot been on a vacation since 2004, when I think I got infected in centrl florida.
Do any of you believe your thyroid disfunction is due to lyme? If so does thyroid get better after lyme and coinfections are treated? Are late stage lyme folks destine to be on thyroid meds rest of life? My hope is my systems would improve once the bugs yad been killed.
I'm on 15mg of armour thyroid, have been on this dose 3 times, last year for 2 months. This year in april for 3 months and again now since end of august. The article above warns about being on low dosage for extended period (their low fose higher than what im on).
Do lyme drs really understand how to treat thyroid or as so many focyors are they guessing and im a guinea pig again? Cant discuss this with llmd cause she is on vacation again. I have mot been on a vacation since 2004, when I think I got infected in centrl florida.
roxie60
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Anyone located reliable documentation, research regarding impact of lyme and coinfections on thyroid, hpa axis, and treatment strategy?
I agree.
The three stories are anecdotal which is not even close enough to say the two conditions are related. It may be a hypothesis for study but I don't know enough about the feasibility of these two conditions being related.
The mother "diagnosed" her son with hypothyroidism and started armour medication before getting tested.
As someone who was hyperthyroid, I find this worrisome. Too much thyroid medication can cause something called a thyroid storm which can kill you. After three days of tachycardia, I finally went to the ER. I was younger then but if this happened at this stage of my life, I would be a high risk of a heart attack. Ths is also called factitious hyperthyroidism.
http://www.nlm.nih.gov/medlineplus/ency/article/000309.htm
Barb
ETA
Actually, now that I think about it, you may still be at risk be at risk when younger as I remember the endocrinologist saying I could've had a heart attack. But I would think a younger person would have a better chance of surviving.
I didn't want to post this in my above rant.
There are a lot of people here rooting for you. You probably already know this, but it can't be said enough.
I wish there were some easy answers for you.
Take care and don't overexert yourself or worry about not being able to get things done. Let other things slide as your health is your number one priority.
Do you have someone to help out?
Best wishes.
Barb
There are a lot of people here rooting for you. You probably already know this, but it can't be said enough.
I wish there were some easy answers for you.
Take care and don't overexert yourself or worry about not being able to get things done. Let other things slide as your health is your number one priority.
Do you have someone to help out?
Best wishes.
Barb
I am just going to throw this suggestion out because you say your LLMD is away.
Have you ever directly reached out to any of the leaders in Lyme research? I don't mean just in your geographic proximity. I mean anywhere in the States or in other countries. You won't get anyone who is willing to diagnose you over the phone or via email, nor should you, but there are compassionate nice experts out there on both sides of the Lyme wars, ILADS and IDSA. Some might give you recommendations on avenues to pursue. The fact of the matter is these experts are passionate about their craft, and some of them give a damn; if you can find the right ones, they may open up and talk theory and possibilities with you.
It shouldn't matter that you are located in the midwest. I am in the NE and I've "spoken" with experts from NY to California to Switzerland.
I have emailed several, and many have responded, and we've carried on dialogues that way. I frequently give my phone number, so some have actually called me. Some of those have given me good advice - some of which I chose to walk away from. But some I followed.
You might be surprised.
If they are researchers, then they will have done studies and you can get their contact data that way. If they are clinicians, then you know how to google that kind of contact data.
It opens up the Lyme world a little bit wider. Start with individuals who have a history specific to your concerns, i.e. any authors of papers on Borrelia and thyroid issues. (For me, it was late stage neuro lyme, so I considered people with reputations or who had published in that area) Like I said, I was so surprised at how kind and giving of their time - without any hint or mention of remuneration - many of these people were/are. Worse case, they will ignore you.
Have you ever directly reached out to any of the leaders in Lyme research? I don't mean just in your geographic proximity. I mean anywhere in the States or in other countries. You won't get anyone who is willing to diagnose you over the phone or via email, nor should you, but there are compassionate nice experts out there on both sides of the Lyme wars, ILADS and IDSA. Some might give you recommendations on avenues to pursue. The fact of the matter is these experts are passionate about their craft, and some of them give a damn; if you can find the right ones, they may open up and talk theory and possibilities with you.
It shouldn't matter that you are located in the midwest. I am in the NE and I've "spoken" with experts from NY to California to Switzerland.
I have emailed several, and many have responded, and we've carried on dialogues that way. I frequently give my phone number, so some have actually called me. Some of those have given me good advice - some of which I chose to walk away from. But some I followed.
You might be surprised.
If they are researchers, then they will have done studies and you can get their contact data that way. If they are clinicians, then you know how to google that kind of contact data.
It opens up the Lyme world a little bit wider. Start with individuals who have a history specific to your concerns, i.e. any authors of papers on Borrelia and thyroid issues. (For me, it was late stage neuro lyme, so I considered people with reputations or who had published in that area) Like I said, I was so surprised at how kind and giving of their time - without any hint or mention of remuneration - many of these people were/are. Worse case, they will ignore you.
roxie60
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Thanks for the support and replies
@duncan just today I thought I would reach out to suzy cohen. She is a pharmacist, has thyroid issues and a husband with lyme and ghyroid issues if memory serves but it mighf not.
@duncan just today I thought I would reach out to suzy cohen. She is a pharmacist, has thyroid issues and a husband with lyme and ghyroid issues if memory serves but it mighf not.
roxie60
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Some kinda good news. My TSH has fallen to 10.66 from 19.24 a couple months ago. On 1/4 gr of armour.
But my FT3/RT3 ratio is low, 16.1, suppose to be over 20 (23-24) if in balance and healthy. Surprising but my Ferritin was up to 62, 20 points higher than the last few tests. Creatinine, AST, ALT high (not a big surprise since been on abx for nearly 10 months for one thing or another, 6 months to treat lyme and co). Serum Cortisol and ACTH in range but I have ordered a diurnal saliva test suppose to be more accurate for Cortisol. Low Cortisol could impact thyroid numbers. I have just been so darn fatigued this past month, I was hoping the armour would give me some energy but it hasn't.
But my FT3/RT3 ratio is low, 16.1, suppose to be over 20 (23-24) if in balance and healthy. Surprising but my Ferritin was up to 62, 20 points higher than the last few tests. Creatinine, AST, ALT high (not a big surprise since been on abx for nearly 10 months for one thing or another, 6 months to treat lyme and co). Serum Cortisol and ACTH in range but I have ordered a diurnal saliva test suppose to be more accurate for Cortisol. Low Cortisol could impact thyroid numbers. I have just been so darn fatigued this past month, I was hoping the armour would give me some energy but it hasn't.
drob31
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Roxie, you may want to look into slow release t3.
Any condition that causes metabolic dysregulation can potentially cause an increased conversion of t4 to rt3. As long as your rt3 is high, it will block t3 receptors. The only way to clear it is to only use t3.
Btw, the only way to get slow release t3, or one of the only ways is to find a holtorf trained doctor who will prescribe it. I found mine in Philly.
Any condition that causes metabolic dysregulation can potentially cause an increased conversion of t4 to rt3. As long as your rt3 is high, it will block t3 receptors. The only way to clear it is to only use t3.
Btw, the only way to get slow release t3, or one of the only ways is to find a holtorf trained doctor who will prescribe it. I found mine in Philly.
Little Bluestem
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I got sick while on vacation in central Florida, too, in 1986.
roxie60
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And yet according to cdc and idsa there is no lyme in Florida or most states. ...criminals
im sorry you got sick.
im sorry you got sick.
drob31
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Some interesting numbers to consider:
After 4 weeks on 30 mcg a day of slow release t3, my results are the following:
Free T3 Before: 3.0 Free T3 After: 3.7
RT3 Before: 20 RT3 After: 16
TSH Before: 1.27 TSH After: 1.08
Free T4 Before: 1.6 Free T4 After: 1.2
As you can see, even with 30 mcg, things haven't changed much, but a slight positive shift.
The real interesting thing that happened is the following, and shows some weird adrenal stuff going on:
Serum blood free cortisol:
Free cortisol Before T3: 0.8 (ref: 0.6-3.0) LOW NORMAL
Free cortisol After T3: 5.6 (ref: 0.6-3.0) HIGH
Either my adrenal glands are out of whack going from very low to very high or blood serum measurements of cortisol are not very accurate. My saliva tests have always showed it being in the high normal range in the morning.
After 4 weeks on 30 mcg a day of slow release t3, my results are the following:
Free T3 Before: 3.0 Free T3 After: 3.7
RT3 Before: 20 RT3 After: 16
TSH Before: 1.27 TSH After: 1.08
Free T4 Before: 1.6 Free T4 After: 1.2
As you can see, even with 30 mcg, things haven't changed much, but a slight positive shift.
The real interesting thing that happened is the following, and shows some weird adrenal stuff going on:
Serum blood free cortisol:
Free cortisol Before T3: 0.8 (ref: 0.6-3.0) LOW NORMAL
Free cortisol After T3: 5.6 (ref: 0.6-3.0) HIGH
Either my adrenal glands are out of whack going from very low to very high or blood serum measurements of cortisol are not very accurate. My saliva tests have always showed it being in the high normal range in the morning.
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I wrote about what cured my lyme disease, https://forums.phoenixrising.me/threads/my-experience-with-lyme-disease.83923/
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