Bouncing Thyroid Levels?

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Regular Member

Date Joined Jan 2009
Total Posts : 296
   Posted 9/17/2012 7:01 AM (GMT -7)   
This might be a strange question. I have a rather advanced case of Lyme disease which may be causing these problems, but I thought I'd check with people who are familiar with thyroid problems.

I have had a slightly high TSH level for years. I tried various combinations of Cytomel and Synthroid. At the beginning of last year, I finally seemed to find the level of Synthroid that worked for me. I was on that for about six months or so, and then I started having strange problems. My insomnia became worse, and I began to have high levels of anxiety, even panic attacks. It took weeks for me to realize that it might be my thyroid medication. I had my levels checked, and sure enough, my TSH was too low. Over the next few months, I kept having to lower my dose because my TSH was too low and I was still having symptoms of too much medication. On the lowest possible dose of Synthroid, my TSH was still too low, so I came off the medication completely. I've been tested several times since then, and my TSH is testing a little high again.

Based on the way that I feel, it seems as though my thyroid levels are bouncing up and down. Most of the time, I feel too tired and "down", but sometimes I feel very energetic, sometimes even hyper or nervous. I can't be tested often enough to see if there is really a difference in my levels.

Does this make any sense? From everything I've read, my levels shouldn't fluctuate like this. I can't seem to tolerate the medication because my natural levels aren't consistent. I have a doctor's appointment this week, and I need to be able to talk to my doctor about what is happening.

Thank you for your help.

Regular Member

Date Joined Jan 2009
Total Posts : 296
   Posted 9/17/2012 12:10 PM (GMT -7)   
After posting this topic, it occurred to me to check my iodine consumption. I don't use table salt, and I rarely eat fish. My current multi-vitamin does not contain any iodine. Neither do any of my other supplements. I wonder if inconsistent levels of iodine could be causing this? Perhaps I was getting enough for a while from something I was taking or eating, but now I'm not? I will discuss this with my doctor to see what he says. If anyone has any other ideas, I'd appreciate the feedback.

Thank you.

Regular Member

Date Joined Feb 2011
Total Posts : 161
   Posted 9/17/2012 9:06 PM (GMT -7)   
I was wondering if you have been tested for Hashimoto's? If not, I would talk to your doctor
about getting the antibody tests for that because Hashimoto's can cause a fluctuation in
thyroid hormones. Some people find the medication dose that stabilizes their thyroid
and they never have any problems. But a lot of others, especially if you have Hashimoto's,
have trouble finding the right combination.

Iodine supplementation is very controversial. I have read so many differing opinions on that.
Several doctors say that excessive iodine can actually trigger autoimmune disease. You might
google iodine and thyroid and read some of the articles. I have wondered the same thing as
you but there really seems to be no agreement. Definitely talk to your doctor and get his

Here are just a couple of websites about it:

The one supplement that I take that I think has really helped with my Hashimoto's is
selenium. I take 200 mcg a day. But again, ask your doctor because you don't want to
get too much selenium.

I hope that helps. I wonder how much your thyroid is affected by the Lyme disease?
Let us know what you and your doctor decide.

Regular Member

Date Joined Jan 2009
Total Posts : 296
   Posted 9/17/2012 9:43 PM (GMT -7)   
Thank you for the information. I will look through it tomorrow.

My doctor did test me for an autoimmune disease, but I don't recall him mentioning which one. I don't know if there is more than one. I tested negative.

I've never eaten table salt. A few years ago, I became completely lactose intolerant. I don't eat fish. Every major source of iodine I can find is something I don't or can't eat. It makes a certain amount of sense. I'm not sure if there is a reliable test for iodine levels.

I can be sure how much Lyme effects my thyroid because I don't have any tests of it before I became infected. I suspect that I had thyroid issues before the Lyme, but I can't prove it. There is definitely evidence that Lyme effects the thyroid, but I don't know why mine seems to fluctuate.

Regular Member

Date Joined Feb 2011
Total Posts : 161
   Posted 9/18/2012 10:12 AM (GMT -7)   
It's possible that you aren't getting enough iodine, especially if you don't use iodized salt or eat
seafood. I have read that bread and eggs contain iodine. I was just wondering if you have
Hashimoto's because it can cause the thyroid hormone fluctuations that you are experiencing.
I would find out if you have had the Thyroid Peroxidase antibody (TPO Ab) and Thyroglobulin
antibody (TGB Ab) tests just to make sure that you don't have Hashi's because iodine can
actually make Hashi's worse.

However, iodine can really help your thyroid if you don't have Hashi's. If the synthetic medication
such as Synthroid causes problems for you, maybe you can use natural supplements to help your
thyroid. Dr. David Brownstein has written a lot about how important iodine is for our health.
You might check out his web site:

I just finished a book One Percent - My Journey Overcoming Heart Disease by Thomas Martin.
He had heart failure and almost died but by making changes in his diet he was one of the
1% who had his heart pump removed and now has a healthy heart. He attributed his thyroid
dysfunction to a lot of his problem and he made changes to help his thyroid which included
iodine supplementation. He takes Iodoral (5mg iodine/7.5 mg potassium iodide) 50 mg
daily. He said it was important to take selenium and B complex vitamin with the iodine.
You might ask your doctor about that. It's interesting because he changed his diet to
follow the guidelines of the Weston Price Foundation and the book Nourishing
Traditions by Sally Fallon which I had started using. It has made a huge difference in
my health.

There is a test that shows iodine sufficiency called the iodine loading test. I really don't
know anything about it but you might be able to find out more on the internet or ask your
doctor. I hope you can find some answers and start feeling better.

Regular Member

Date Joined Jan 2009
Total Posts : 296
   Posted 9/18/2012 2:27 PM (GMT -7)   
I eat eggs, but not in a quantity sufficient to give me my daily iodine requirements. I don't eat bread, and I'm not sure that it's fortified with iodine anymore. Ironically, part of the reason I don't eat bread and table salt is for health reasons. Doctors and nutritionists are pushing us away from these foods, but for a lot of Americans, these are our main sources for iodine.

I did have the TPO Ab and TGB Ab tests. I was negative. My doctor didn't call it the Hashimoto's test. He used the antibody terms. That's why I wasn't quite sure.

Last November, on the lowest dose of Synthroid, my TSH was too low, but my Reverse T3 was too high. My doctor said I had Non-thyroidal Illness Syndrome (NTIS) or Euthyroid Sick Syndrome (ESS). He recommended coming off the synthroid and taking cytomel instead. I came off of everything. A few months later, my TSH was a high again, but my T3 and T4 levels were normal. This is usually how it is. I don't understand why it kept changing. I don't have NTIS/ESS anymore?

I would have thought that an iodine deficiency would have shown up as low T3 or T4, since iodine is required for that process. But maybe that's not the way it works. Thyroid problems don't always make sense to me. My T3 and T4 are always normal, but I still have symptoms of hypothyroidism.

The upper daily limit for iodine for adults is supposed to be about 1,100 mcg, but I doubt I even get the RDA amount, which 150 mcg. It's hard to tell how much I'm getting from food because it varies a lot based on soil content, etc.

Thank you very much for your help. I'll let you know what my doctor thinks. Taking an iodine supplement would certainly be easier than taking thyroid medication.

Veteran Member

Date Joined May 2012
Total Posts : 641
   Posted 9/19/2012 5:29 PM (GMT -7)   
Wow, what a roller coaster ride.. I am not sure how pertinent this is to you, but I see you said you don't or can't eat a lot of things.. are you by chance on a gluten free diet? do you have celiac or intestinal problems?
I am asking because I was diagnosed hypothyroidism several years ago, and while I do not know or understand what all the numbers mean, my doctor said they like to see your levels (not sure which ones he meant, ) to be under 6..mine was 65. Then we went thru YEARS of adjusting yo-yoed terribly.
At the time I was also trying to find out what was going on internally with my digestive system.. When I finally got diagnosed at gluten sensitive, and went on a gluten free diet, my thyroid level came down to 9. I refused to go on any meds at first, because it was the most normal it had been in years, and I didn't want to mess with it.
Well, I have had to adjust and ended up back on synthroid, but my levels are going nuts primary finally ordered an ultrasound and found a goiter.
Now, I was not really that worried until I talked to my mother and found out that 2 women in my family died from goiters. They apparently grow "into" our throats and not "out of" them...and it strangled my great great grandmother and great great great grandmother. And then one of my uncles had Grave's now I have to go to an endochrinologist next week.
Not that any of that has to do with you, sorry...but I was very curious to know if you have digestion issues, because when my system is off on digestion, my thyroid goes further out of whack....
just food for thought.... good luck
total colectomy with ileo rectal anastomosis 1/12

Regular Member

Date Joined Jan 2009
Total Posts : 296
   Posted 9/19/2012 6:14 PM (GMT -7)   
mrsbugzy: Thank you for your reply. The only major digestive issue that I have is that I am very lactose intolerant. Since dairy is a good source of iodine, that's one reason I don't get enough. I dislike table salt. I don't eat bread because I avoid simple carbohydrates. With my weight problems, due at least partly to my thyroid problems, I eat very healthy. Thyroid problems don't really run in my family. I'm not sure why I have them, but my Lyme disease may be the cause.

Erica G
New Member

Date Joined Aug 2012
Total Posts : 17
   Posted 9/27/2012 9:37 AM (GMT -7)   
Hey everyone,

I have an underactine thyroid and I currently take Synthroid. Two weeks ago, my levels were 1.234. When I had my blood taken Monday, my TSH levels are too high now. They are 4.752. My Primary Care doctor is giving me a referral to an endocrinologist. I am starting to wonder if I have hashimoto's. My thyroid levels are always fluctuating and some days I feel tired, and some days I feel energized. My skin is dry and my skin is dry. Some days I am so tired it is hard to get motivated. I am not sure what is going on. I will update everyone when I go to the doctor but I am starting to think this may be the cause. I am waiting for a lab to come back because my primary doctor tested me for lyme's diease because I have high inflammation and other things going on. Do you have any other ideas of what it could be? Is it normal to have your levels go up and down while on medication?
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