THYROID AND PAIN CONNECTION

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minerals
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   Posted 7/27/2009 9:39 AM (GMT -7)   
THIS IS MY EXPERIMENT I am not advising anyone to do this JUST consider that thyroid can be the blame for many residual symptoms of Lyme disease and co-infections. If treatment doesn't seem to be completely working after a long time or even in the beginning of treatment prehaps you need to see what your thyroid gland is doing or not doing..

I hope this post is not premature but I am so surprised of the results that I thought it is time to share my experience that has taken away almost all of the pain I have had in my neck and shoulders. It was severe for a few years and felt like tight rubber bands constantly and was getting worse. If it went away at all it was only until I used my arms and muscles, then it would come back after doing the littlest chore. The only relief I have had from that pain since beginning Lyme treatment was when I first started Armour thyroid meds fro Hashimotos 2 1/2 years ago. Gradually though the pain came back after about a year. Little did I know it was because it seems that I needed more thyroid meds. In addition to the other symptoms I GAINED over 30 lbs since September and the weight kept trying to come on. I was getting huge and bloated with eating better food and less than ever before. The LLMD had no explanation.

Through the years up to recently I had thyroid tests but the results showed only a "little low" and antibodies were always high resulting in Hashimotos hypothyroiditis. I was taking only 1 grain of Armour and was supposed to maybe increase it but the LLMD never did. So we continued to blame the fibro pains on Lyme and bart and babs which I have been treating for 2 1/2 years. Also had IV for 4 months last year. I continue to treat for Lyme and co's.

In addition last year I developed severe hot flashes which were blamed on everything from Babesia and Bart to Rifampin. Even after I knew I had Babesia 2 1/2 years ago I NEVER even sweated from it. I though it was odd to have that symptom show up last September. Which was when I began to treat for Bart and continue to do so along with Zithromax we blamed the sweats on that. I still get flashes but nothing like I did they are reducing daily. In addition the headaches I was getting daily are also less severe and almost gone as of 3 weeks ago.

Anyway what this is leading up to is this. I did much research on Hashimoto's and Armour and found out that the dose I was taking was very low. Also I learned that thyroid issues can cause pain in muscles and joints, sleep problems headaches and more. I learned that some people should at times be treated by symptoms rather than test results as we are all individuals. . I called my LLMD to tell him that I would like to increase my Armour and was going to do it very gradually. I was not to see him for 2 months and the endo I went to did not understand Lyme disease or Armour thyroid meds------ so I did this basically on my own... I was aware of what symptoms of overmedicating to watch for. Too much meds can be as bad as too little. It is important to get the dose just right and that can only be achieved by trial and error preferable with a knowlegable Doctor.

I was desperate enough to try this on my own because of relentless painm that my LLMD had no explanation for. about one month ago I began to increase the dose by 1/4 grain increments (I split the pill in quarters) and was careful to watch for symptoms of over medicating. Every week or so if no adverse symptoms appeared I increased the dose until I reached 2 grains-which is double what I was taking---but still less than the average most people take for effectiveness. I learned that thyroid meds can be more effective if you split the total dose into taking the meds 2 times a day. I take them in the morning and late afternoon. I am careful not to take any supplements within 3 hours of taking thyroid meds.

The results are remarkable. I will stay at 2 grains until I see my LLMD again. I have begun to lose weight (I gained 30 lbs in 6 months (definatly not from food). I have more energy, I am sleeping much better with less sleeping meds, my neck and shoulder pain has completely left, the headaches are almost gone, and I generally feel better.

Of course there is still Lyme arthritis and pain in other places but this is the best my muscles have felt since before I got Lyme. My hope is that it continues. I also hope that all of you consider that:
The thyroid can get pretty messed up from Lyme and its buddies
Sometimes your dose of thyroid meds needs to be adjusted
Levels can change quickly and need to be monitored
Some need to be medicated even when the tests show "ranges" are within limits

As we are all on this forum to share our experiences I hope you get something out of this one of mine. I continue to stay on antibiotics until I get the courage to go off again with my new results in hand. I will keep you posted of any significant changes.

Blessings
Diagnosed 2003 Lyme, Babesia, Bartonella, Micoplasma,Hashimotos Thyroiditis. Have had since early nineties.

Outstare The Darkness--------The Light Will Come!


Dowa
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Date Joined Sep 2008
Total Posts : 1120
   Posted 7/27/2009 10:01 AM (GMT -7)   
Hi Minerals. I agree with you 100%. I recently listened to a lecture done by a doc here in Dallas that said we can have normal thyroid levels on bloodwork and still have a condition he calls Thyroid Resistance. Your thyroid makes the appropriate levels but your body can "resist" them and you suffer from low thyroid symptoms regardless of what the bloodwork shows. I have had my thyroid checked at least 10 times, it is always changing and have not taken the Armour yet.  Glad you have solved the puzzle and hope you continue to feel better.   D

minerals
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Date Joined Jul 2007
Total Posts : 943
   Posted 7/27/2009 10:03 AM (GMT -7)   
Dowa,

Thanks for the reply and for the confirmation!
Diagnosed 2003 Lyme, Babesia, Bartonella, Micoplasma,Hashimotos Thyroiditis. Have had since early nineties.

Outstare The Darkness--------The Light Will Come!


CajunGrl
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Date Joined Mar 2009
Total Posts : 4717
   Posted 7/27/2009 10:09 AM (GMT -7)   
Minerals,

Thanks for posting that. I'd like to say again that no one try this on their own unless their doctor knows. Minerals did let her doctor know what she was doing.

That being said, I've tried to go up on my dosage, with my doctors consent, but everytime I do, I get fast heartbeats even if my thyroid levels are low. I've researched this and read that if you have Adrenal Fatigue, this could happen. I have yet to get a doctor to check my adrenals. I've been feeling bad for over a year now and nothing seems to work for me.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


minerals
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Date Joined Jul 2007
Total Posts : 943
   Posted 7/27/2009 12:58 PM (GMT -7)   
CajunGrl, Are you on Armour? Armour works differently than Synthroid. If you are on Synthroid there is a conversion to switch to Armour which is natural hormone and ups the T3 and T4 however not many Doctors will prescribe Armour simply because they are uneducated as to the benefits. And yes rapid heart beat is one of the things I was watching for with the increased dosage.

My adrenal levels were one of the first things that were tested when I first went to an LLMD- it was a 24 hour saliva test I think. Then I had to send it away to a special lab. My adrenal levels showed my cortisol was sky high causing the adrenals to get depleted. High cortisol caused extreme inflammation throughout the body and aided to weight gain as well. As a result I had many tests to see the condition of pituitary - which ended up being OK. I have not had my cortisol levels checked lately but I am feeling so much better that I think the adrenals are much better too. I took supplements for the adrenal fatigue for many months.

Blessings
Diagnosed 2003 Lyme, Babesia, Bartonella, Micoplasma,Hashimotos Thyroiditis. Have had since early nineties.

Outstare The Darkness--------The Light Will Come!


Traveler
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Date Joined May 2007
Total Posts : 35859
   Posted 7/27/2009 1:53 PM (GMT -7)   
Hi All,
Thank you for all of your posts - very informative & confirming on what I thought I was learning. I have great difficulties with comprehension & retention, so it was nice to know!!

I am getting ready to speak to my doc about taking Armour - he's been pretty ill, but I suspect he will be back soon.

Trav
- Traveler
"Conditions": Lyme Disease, STARI, RMSF, Hashimoto's Thyroiditis, Lyme Arthritis, Neuro LD, FM, Chronic/acute EBV, IBS-C, Diverticulosis (& "itis") & now Lyme arthritis (?).


Martha's Vineyard
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Date Joined Jul 2008
Total Posts : 1119
   Posted 7/27/2009 8:35 PM (GMT -7)   
My mom came to visist me up in the vineyard. I had rented this awsome house on the water in Edgar town.
We went out to the water by tall grass.
When we got back to the house she had this long denim shirt on and her skirt was covered in these tiny while ticks...
She now had a active thryroid and moodiness and depression and memorty problems as well.

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 7/28/2009 12:12 AM (GMT -7)   
Hey Minerals,

I cannot take Synthroid at all. It makes my legs hurt real bad and I don't know why. The only thing I've read is that it wasn't converting like you mentioned and that's why I hurt.

I've been on Armour for a few years now. The first year was awesome. I felt better than ever before. The next year, I went downhill. The only thing I can come up with is Adrenal Fatigue. I've read that if you have Adrenal Fatigue, and take Armour, you can get the fast heatbeats. I do take something for my adrenals but I'm not sure it is enough. It is a supplement.

I may call my doctor and ask him if I can do what you did and increase slowly. Maybe the smaller pieces will make a difference.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


sher004
Regular Member


Date Joined Jun 2009
Total Posts : 23
   Posted 7/29/2009 11:17 AM (GMT -7)   
Thank you for this post. I never realized that low thyroid can cause pain. I'm on armour thyroid but perhaps not high enough dose. I lower it alot with the high temps we have here in CA and hot flashes I've been having. But I'd rather get rid of some pain then be cooler.

minerals
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Date Joined Jul 2007
Total Posts : 943
   Posted 7/29/2009 12:36 PM (GMT -7)   
Another super important symptom that has gone is one that NOT one doctor could explain. That is "severe BURNING tongue and lips". My tongue used to feel like hot pepper was on it constantly for several years. After more research on Hashimoto's I learned that the tongue burning, swelling and scalloping  is one of the symptoms. The endo, the LLMD, the allergist and none of the 32 other doctors I went to through the years knew what the burning was except to call it burning mouth syndrome. Well that has been COMPLETELY gone since upping my dose of Armour this is going on week 4. Fingers crossed that it continues.
Diagnosed 2003 Lyme, Babesia, Bartonella, Micoplasma,Hashimotos Thyroiditis. Have had since early nineties.

Outstare The Darkness--------The Light Will Come!


1bitten2xshy
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Date Joined Jun 2007
Total Posts : 849
   Posted 7/29/2009 12:47 PM (GMT -7)   
Cajun- I have been told that you need to support your Adrenals and get that in order for several weeks before starting on any type of thyroid meds.

Did you ever have the saliva or BT for your adrenals done?
Co-Moderator Lyme Disease Forum
Life is not about waiting for the storms to pass...it's about learning how to dance in the rain


CajunGrl
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Date Joined Mar 2009
Total Posts : 4717
   Posted 7/29/2009 1:09 PM (GMT -7)   
1bitten,

Nope, never had my adrenals checked....not once. I even told my doctor that I had symptoms of Adrenal Fatigue and his response was that he didn't think the test was accurate. So, they drew blood and checked my liver and kidney function. What kind of crap is that!?!

I need to find another doctor and soon. I'm always feeling too bad to do anything though.

I do take Adrenal Complex every day. It may not be enough to support my Adrenals but I guess its better then not taking anything at all.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


1bitten2xshy
Veteran Member


Date Joined Jun 2007
Total Posts : 849
   Posted 7/29/2009 1:30 PM (GMT -7)   
You may need a small dose (short term) of HC for your adrenals. My LLMD said if needed for Adrenal support, you can take as long as it is 10MG or less.
Co-Moderator Lyme Disease Forum
Life is not about waiting for the storms to pass...it's about learning how to dance in the rain


+Lyme
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Date Joined Apr 2009
Total Posts : 1304
   Posted 7/30/2009 5:38 AM (GMT -7)   
This is all very interesting. Is Armour a prescription drug or something you can get yourself? I have LLMD appt today and want to be sure to ask him if my labs indicate no Hashimotos, as my pcp said. Do I understand you to say that Armour is good particularly for Hashi? My understanding is I just have hypothyroidism and I'm certain it was caused by Lyme. LLMD wanted me to chart my temps to check for Wilson's, but my info says Wilsons is having a low temp, but normal thyroid levels, which is not my case.

Again - please tell more about the Armour and how to get it. Sounded like you were obtaining this yourself?
 


minerals
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Date Joined Jul 2007
Total Posts : 943
   Posted 7/30/2009 8:08 AM (GMT -7)   
+Lyme I replied to your question with a detailed post that got wiped out. Please email me for more infomation about Armour. It is a prescription medicine and no I don't get it on my own.
Diagnosed 2003 Lyme, Babesia, Bartonella, Micoplasma,Hashimotos Thyroiditis. Have had since early nineties.

Outstare The Darkness--------The Light Will Come!


Traveler
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Date Joined May 2007
Total Posts : 35859
   Posted 7/30/2009 8:40 AM (GMT -7)   
+Lyme:
May I ask - "Wilsons"?
- Traveler
"Conditions": Lyme Disease, STARI, RMSF, Hashimoto's Thyroiditis, Lyme Arthritis, Neuro LD, FM, Chronic/acute EBV, IBS-C, Diverticulosis (& "itis") & now Lyme arthritis (?).


+Lyme
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Date Joined Apr 2009
Total Posts : 1304
   Posted 7/30/2009 8:49 AM (GMT -7)   
Minerals and Traveler, I'm getting ready for LLMD appt, so will visit back and email you later. Thanks Minerals, and Traveler, I had to look up Wilson's online, you might want to look. I only skimmed, because my thryroid tests shows hypothyroidism. I did not chart my temps like my Dr asked, but will tell him they are always low.
 


Traveler
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Date Joined May 2007
Total Posts : 35859
   Posted 8/1/2009 9:56 AM (GMT -7)   
+Lyme-
My temps are always low (97.4)- until the afternoon/evening hours - then my temps rise to 98.9 to 99.9.
- Traveler
"Conditions": Lyme Disease, STARI, RMSF, Hashimoto's Thyroiditis, Lyme Arthritis, Neuro LD, FM, Chronic/acute EBV, IBS-C, Diverticulosis (& "itis") & now Lyme arthritis (?).


+Lyme
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Date Joined Apr 2009
Total Posts : 1304
   Posted 8/1/2009 10:42 AM (GMT -7)   
Traveler, I'm sorry, but I'm so overwhelmed after my LLMD visit. (hasn't helped that my car was stolen. I'm hitting bottom right now)
 
Anyway, I am positive that I did not have thyroid problem before my tick bite -- I was thin and my belly was as flat as it had been for quite awhile.  My PCP diagnosed hypothyroidism, px levothyroxin.  When I showed that lab to my LLMD he said it did not show any test for Hash.  So I dont' know what to think. 
 
I told him I have had no improvement w/ the levo and he said it would take 3-6 mo to experience improvement.
LLMD had asked me to record my temp 3X day and gave me literature on Wilson's, but I did not keep up w/ the temp thing because it was always low, except for a few afternoons and mornings when I had a low grade fever.
 
At my visit, looking at my labs, he noted babesia, the 3 viruses, low testosterone & adrenals, IGF binding protein, I don't remember what else. That's when I started getting overwhelmed -- all I hoped for was treatment for babs and Lyme.  Well, he just started writing out scripts and tests and stuff and told me to work on the Wilson's again. It all felt so disorganized.
 
And now others here are saying we have to treat the adrenals before treating thyroid and others. I'm sorry, but I am cracking under all of this!
 
I understand Lyme and Babs can cause all these illnesses and issues.  But I just can't go out and start buying and taking a bunch of different stuff like this. I kept asking him, didn't Lyme cause all these issues and he would say 'yes', but that I'd feel much better w/ these scripts.  Well, won't I feel much better once my lyme has improved??
 
Would it be incorrect to say that Lyme causes all the various symptoms that it causes, because of what it does to hormones, immune system, etc, and that is where all these symptoms come from?
 
I am very interested in your Armour information, much more so than the Wilson's 'protocol', which seems to be just one more 'alternative' illness.  Esp because of the improvement you have experienced.  Are you saying that your body temp is always low, even w/ the Armour? So don't you still have a problem?
 
But I do not want to also buy adrenal and testosterone stuff, along w/ thyroid, abx and whatever I choose to try for Babs.  And I don't understand why he didn't px for babs, when it's clear that I have it. He just ordered a more expensive test.
 
I will need a new script for levo pretty soon. I'm hoping to have found another Dr by then, or will at least go back to my PCP.  So I am glad to have your info on Armour. That, along w/ abx and supplements are about as far as I care to go, along w/ my depression and anx meds.
 


Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression.
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19,, low adrenals &misc other hormones, depression, anxiety, more of the above.
What don't these nasty bugs cause? 
 


Traveler
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Date Joined May 2007
Total Posts : 35859
   Posted 8/1/2009 6:18 PM (GMT -7)   
Hey Lyme,
I have not had any treatment for my thyroid as of yet, but they do swell (to the point that others ask about it) & are quite painful, and so will be talking to my doc on my next visit.
Besides, of course you are having some depression issues!!! You live with LD, and that is harder than anyone else - except other Lymies-could possibly fathom!!

I agree with you on the whole 'more drugs' thing that some docs like to 'push'. I take an incredible amount of scripts & supplements each day - although there are plenty of others that have a LOT more meds to deal with.

I still look forward to having more chats with you but I don't do chat rooms very well b/c of my whole brain thing - I can't get anything said when I feel like I have some kind of time limit.

Take care~
Trav
- Traveler
"Conditions": Lyme Disease, STARI, RMSF, Hashimoto's Thyroiditis, Lyme Arthritis, Neuro LD, FM, Chronic/acute EBV, IBS-C, Diverticulosis (& "itis") & now Lyme arthritis (?).


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 8/1/2009 8:28 PM (GMT -7)   
I sincerely apologize, my earlier post was also directed to Minerals, who I neglected to properly address.  Please no offense, Minerals, that was strictly lymebrain and rushing. I also need to thank YOU for the Armour info.
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.
What don't these nasty bugs cause? 
CD57= 60, so we're in pretty good shape.
 


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35859
   Posted 8/2/2009 12:27 PM (GMT -7)   
Yes, Minerals, I would like to thank you very much for your post - as I will be seeking tx for my thyroid very soon. Althoug I have done quite a bit of reading, it is not the same as someone who has the same kinds of issues as we (& may others here) share, can I get 'a feel' for how it might or might not help.
Thanks again!
Trav
- Traveler
"Conditions": Lyme Disease, STARI, RMSF, Hashimoto's Thyroiditis, Lyme Arthritis, Neuro LD, FM, Chronic/acute EBV, IBS-C, Diverticulosis (& "itis") & now Lyme arthritis (?).

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