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Regular Member

Date Joined Jun 2009
Total Posts : 367
   Posted 6/28/2009 7:13 PM (GMT -7)   
My numbers were in normal limits last May. At the start of some very bad symptoms from Lyme. It was 3.86 normal but on the high side. Since then it has gone over 5. My doc says over 3 wasn't normal so who knows if this was Lyme related. I am on synthroid now and the one thing that has improved is me being cold all the time.

I go back for blood work this week to have it checked again and am having my cortisol tested. I am a bit freaked about it. I dont even understsnd all of this. Back to the endo this month and then my LLMD after that.

Do a lot of people with Lyme have the hypothyroid? I just don't fit the picture. I am not overweight, if anything I have lost weight since the start of all of this. I think I weigh 112 and I am 5 4". Just curious if hypo caused by Lyme can present itself a bit differently?

Veteran Member

Date Joined Sep 2008
Total Posts : 1120
   Posted 6/28/2009 9:24 PM (GMT -7)   
My numnbers also jump around, last check I was also at 5. And to anwer your question, I am thin, 5'6 at about 130 so I think the LD messes with our thyroids without having the normal symptoms like weight gain. I am also cold most of the time. Good luck- D

Regular Member

Date Joined Jun 2009
Total Posts : 367
   Posted 6/28/2009 9:36 PM (GMT -7)   

Veteran Member

Date Joined Jul 2007
Total Posts : 715
   Posted 6/29/2009 4:38 AM (GMT -7)   
The infections mess up the whole endocrine system. I was also hypothyroid without many of the common symptoms. I was cold alot and have a sub-normal temp 96.5-97.8 is normal for me. I never had weight fact I have a hard time keeping up my weight. So the doctor told me I had secondary hypothyroid which means my thyroid is actually healthy but can't function because of the stress of whatever infection caused it. Hopefully once things get better I can come of the medications.
I am currently on synthroid and cytomel (T3). Taking these two medications keeps my levels in the normal range.
I am also on cortef for adrenal insufficiency. The last saliva test I had the levels were just normal even on medication. I think the cortef helped with some of my exhaustion.
I also had a bone density test because of the problems with my adrenals and was found to have osteopenia and have to take evista for that. Luckily my doctor was smart enough to send me for that test or else my bones could have been in alot of trouble.
My numbers have been stable for a couple years now being on the medications...

Veteran Member

Date Joined Feb 2003
Total Posts : 9208
   Posted 6/29/2009 5:34 AM (GMT -7)   

Hi Lovelabs.  Lyme disease can affect thyroid and other hormone levels.  I think a TSH of 3.86 is high.  I believe the high end of the new range is 2.5.  Although it may not be typical, some people who have hypothyroidism lose weight.

It is important to get the Free T3, Free T3 (besides the T3 and T4) and thyroid antibodies tested.  Have you had these levels tested?  Treatment should not depend solely on the TSH.  Many doctors do not test these levels and treat only by the TSH result.  If antibodies are present, it can indicate Hashimoto's Thyroiditis which is an auto-immune thyroid disorder.  Some people who have Lyme have this.

Some thyroid meds such as Synthroid is a T4 only med and meds like are Armour are a T3 and T4 med.  Some people do well on one type, some on another.  If Synthroid does not seem to work, you may need a dose increase or you may do better on a T3/T4 med.  A T3 only med such as Cytomel may also be added.

I know it is confusing, but I think it is important to learn as much as you can so you can get the best treatment.  I recommend always getting copies of your test reuslts.  Lyme and hypothyroidism have many similar symptoms.  Getting optimal thyroid treatment will help.

i think everyone who has Lyme should have their thyroid, adrenal and hormone levels tested.  Cortisol testing checks adrenal function.  It is my understanding that saliva testing is more reliable than blood testing.  If you want further information on saliva testing, let tme know.  

Post Edited (ticker) : 6/29/2009 6:38:14 AM (GMT-6)

Regular Member

Date Joined Jun 2009
Total Posts : 367
   Posted 6/29/2009 6:29 AM (GMT -7)   
thank you for all of the info. I did have the freeT3 &T4 checked. The only thing that was out of wack was the TSH. My LLMD & Endo said that number should be a "1".

The cortisol check I am having is a blood test. Is it a big deal if that comes back bad? Do they put you on meds for it? My endo said I was not severe but my number should be a "1". He was very open to all of the Lyme info I gave him and so nice about it. I was fearful he was going to be one that didn't believe in CLD. But I could tell he didn't know a lot about it either. He never mentioned anything about the infection slowing it down. But then again my LLMD is not too sure either if it was caused by Lyme because the only time I had it tested was when I had Lyme. Thanks for all the great info.

New Member

Date Joined Jun 2009
Total Posts : 15
   Posted 6/30/2009 9:31 PM (GMT -7)   
I found out about my thyroid problem when I was 16. I had gained 30lbs in a year and my doc at the time tested my thyroid. I'm not sure if it was the THS, or the t4/t3.. but whatever one is the range of being under 5ish is normal... I was at a 20. So my thyroid was like not working at all. They put my on levoyxl 125. I also have nodules on my thyroid and had to get a biopsy (not fun) but everything with that was fine. Now I'm on 50mm of the levoyxl 7ys later, and actually have to get my test results back in the next few days on how it is now. I get it tested every 6months or so. I know it runs in my family, and is a pretty common problem. I had mono and then found out about my thyroid at around the same time, and then not far after tested positive for Lyme and only treated with 2 weeks of antibiotics which did nothing and just stayed midiagnosted till now.

There are some great supplements for your thyroid too.. such as "thyroid sense" and pure iodine drops that I get at my job.. Whole Foods Market. Theres quite a bit to choose from. Figure they can't hurt! I'm 5'5 and 7yrs ago I was 150lbs. Now I maintain around 130ish. I have always had a low body temperature.. being in the 97s is normal for me.

I tell everyone who says "i try so hard to loose weight and can't" to get there thyroid tested because it's that common.
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