# Feeling very hypo, but TSH is 0.1



## Islandgirl

I was diagnosed with Hashimoto's about 5 years ago. Started on small amounts of levothyroxine. After going back and forth with natural replacement versus synthetic, I discovered that for me, Synthroid is best. Was on a small dose (35 mcg) for a couple of years. But the general practitioners said my TSH was within normal limits (around 3). No wonder I never felt well. Saw an endocrinologist a couple ofyears ago. He upped my dose to 75 mcg/88mcg alternating daily. I felt so much better! My TSH dropped to under 2 and I felt that this had been the answer all along. I don't know why but it seems summer always throws me into a tailspin. Seems like it's all the light, but I don't know. Maybe that's due to something else. Anyway, most of this summer I've been feeling bad again, and mostly hypo. I finally made an appt. with my GP, and told her I was pretty sure I was hypo. I was feeling foggy headed, could sleep all the time, hair falling out. At the visit, I noticed my pulse was in the 60's which is pretty low for me. I'm typically in the 80's. She agreed I might need to up my dose of Synthroid but said we'd see what the labs showed. Well, they called a couple of days ago and said my TSH was at 0.1, T3 & T4 were normal. She told me to stop taking the 88 mcg of Synthroid and just do 75 every day and we'll check in 8 weeks. Well, today is Day 2 of only 75 mcg and I'm thinking how am I supposed to function? If my TSH is so low, why is my T3 & T4 normal? Thinking maybe I should go back to the endocrinologist. I hate this. Anyone have a clue about what might be going on? How do I have such a low TSH and yet feel hypo?


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## Andros

Islandgirl said:


> I was diagnosed with Hashimoto's about 5 years ago. Started on small amounts of levothyroxine. After going back and forth with natural replacement versus synthetic, I discovered that for me, Synthroid is best. Was on a small dose (35 mcg) for a couple of years. But the general practitioners said my TSH was within normal limits (around 3). No wonder I never felt well. Saw an endocrinologist a couple ofyears ago. He upped my dose to 75 mcg/88mcg alternating daily. I felt so much better! My TSH dropped to under 2 and I felt that this had been the answer all along. I don't know why but it seems summer always throws me into a tailspin. Seems like it's all the light, but I don't know. Maybe that's due to something else. Anyway, most of this summer I've been feeling bad again, and mostly hypo. I finally made an appt. with my GP, and told her I was pretty sure I was hypo. I was feeling foggy headed, could sleep all the time, hair falling out. At the visit, I noticed my pulse was in the 60's which is pretty low for me. I'm typically in the 80's. She agreed I might need to up my dose of Synthroid but said we'd see what the labs showed. Well, they called a couple of days ago and said my TSH was at 0.1, T3 & T4 were normal. She told me to stop taking the 88 mcg of Synthroid and just do 75 every day and we'll check in 8 weeks. Well, today is Day 2 of only 75 mcg and I'm thinking how am I supposed to function? If my TSH is so low, why is my T3 & T4 normal? Thinking maybe I should go back to the endocrinologist. I hate this. Anyone have a clue about what might be going on? How do I have such a low TSH and yet feel hypo?


Hi there and welcome to the board.

You may need to find a doc who understands this stuff. Treating a patient based on TSH only is a no, no and running the Totals instead of the FREES is another no, no.

Free T3 and Free T4 are the only accurate measurement of the actual active thyroid hormone levels in the body. This is the hormone that is actually free and exerting effect on the cells. These are the thyroid hormones that count.
http://www.drlam.com/articles/hypothyroidism.asp?page=3

understanding thyroid labs
http://www.amarillomed.com/howto/#Thyroid

http://pro2services.com/Lectures/Spring/Thyroid/ThyTests.htm

Free T3 etc. 
http://www.thyroid-info.com/articles/freet3woliner.htm

Hope the above info helps you understand why you need a doc who "gets" all this.


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## Islandgirl

Thanks, Andros. I think I'll go over the GP's head and make an appt. with my old Endo which she said I no longer needed to see as she (the GP) could take care of my thyroid needs.


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## Andros

Islandgirl said:


> Thanks, Andros. I think I'll go over the GP's head and make an appt. with my old Endo which she said I no longer needed to see as she (the GP) could take care of my thyroid needs.


Excellent and do let us know. Knowledge "is" power so I hope the links are useful to you!


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## Islandgirl

Called the endo's office last week. He is out of town until the last week of the month which is when they scheduled me to see him. In the meantime, I continue to feel bad. Hard to work when your thinking is slowed. One day I couldn't stand the fogheadedness anymore and I took a synthroid, broke into quarters, and stuck a quarter under my tongue. I knew swallowing it wouldn't do much as I had eaten lunch. Figured I'd absorb quickly into the bloodstream sublingually. Boy did that feel awful! All I got out of that was the feeling like I'd taken speed. Fast heartrate, feeling overheated and just weak. Now I'm trying to remember what I even came here to ask.

Oh yes, does anyone get the feeling of pressure in their neck? When I feel like this, I get this sensation of having pressure at the base and sides of neck and it causes a strange sensation of fullness in my ears. Feeling hypo is always accompanied by this sensation. But when I described it to my doctor, she just looked at me and felt my neck, without comment on her findings. So, I think everything must feel normal to her. I don't look like I have any goiter, but sometimes I wonder if the swelling is on the inside aspect (causing this sensation of pressure up to my ears) of the thyroid rather than on the outside where it can be seen and felt. Thoughts?


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## bigfoot

Welcome from a fellow newbie! :anim_32:

Hmm... I wonder if it's possible that you are over-medicated but have signs & symptoms that remind you of being hypo (but are actually hyper at the moment)? From what I read on here and have experienced myself, nothing is in concrete. Something like a rapid pulse or anxiety could be from under-treated hypothyroidism, hyperthyroidism itself, or just simply being over-medicated with a drug like Synthroid.

Another possible avenue is if you are taking other medications. They might be interfering with your thyroid medication. Same goes for diet; lots of fiber, iodine, soy, or certain veggies can aggravate things by changing how your body absorbs the thyroid hormones.

As Andros mentioned, the Free T3 & T4 might be a little more telling. The trick is finding docs who are willing to run these tests (or convincing your own). My endo is not too thrilled about the "free" labs as an accurate measurement and prefers TSH. I can _somewhat_ agree with him, since there are antibodies and other medications that could be skewing the results. At one point via another doc my Free T3 & T4 were tested and were as optimum as they could be, yet I felt completely awful and hypo. I think each individual has their own things going on and a good doc juggles the patient's medical history, TSH, Free T3/T4, and signs & symptoms to come up with optimum treatment.

The pressure in the neck you mentioned has also happened to me. It comes and goes, although it seemed like when I was probably under-medicated it was flaring up quite often. I don't have a goiter as far as I (or any docs) can tell. Now, having gone from 50 MCG to 88 MCG, the swelling is less frequent. When one endo felt my neck he said it was fine, another doc said the thyroid was slightly swollen, and yet another endo said it is common to feel neck tightness with Hashi's. Take your pick, LOL!


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## Andros

Islandgirl said:


> Called the endo's office last week. He is out of town until the last week of the month which is when they scheduled me to see him. In the meantime, I continue to feel bad. Hard to work when your thinking is slowed. One day I couldn't stand the fogheadedness anymore and I took a synthroid, broke into quarters, and stuck a quarter under my tongue. I knew swallowing it wouldn't do much as I had eaten lunch. Figured I'd absorb quickly into the bloodstream sublingually. Boy did that feel awful! All I got out of that was the feeling like I'd taken speed. Fast heartrate, feeling overheated and just weak. Now I'm trying to remember what I even came here to ask.
> 
> Oh yes, does anyone get the feeling of pressure in their neck? When I feel like this, I get this sensation of having pressure at the base and sides of neck and it causes a strange sensation of fullness in my ears. Feeling hypo is always accompanied by this sensation. But when I described it to my doctor, she just looked at me and felt my neck, without comment on her findings. So, I think everything must feel normal to her. I don't look like I have any goiter, but sometimes I wonder if the swelling is on the inside aspect (causing this sensation of pressure up to my ears) of the thyroid rather than on the outside where it can be seen and felt. Thoughts?


Thyroid gland can and does grow inward. It will take the path of least resistance. This is called Substernal Goiter.

http://www.vesalius.com/graphics/cf_quicknotes/qn.asp?VID=1052

Click on related narrative for photos

Have you had a sonogram or RAIU?


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## Islandgirl

Thanks, Bigfoot! I also wondered about that--about being hyper. I'd read that they treat some hyperthyroidism with Synthroid as well. But can you be hyper with Hashi's? I mean I read you can swing back and forth from hyper to hypo, but don't you mostly end up hypo as you are slowly losing thyroid function? Such a crazy disease!


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## Islandgirl

Andros, thanks for that link. You know I used to have the sensation of having a lump in my throat. It would come and go. When I complained to a doctor about it, (a GP) he said it's probably irritation due to acid reflux. I thought, well I have had a history of severe heartburn in the past, so maybe he's right. But, I still think it might have been this substernal goiter. Interesting that I don't have it anymore (the lump) but am actually dealing with some acid reflux symptoms lately (since going down on my Synthroid). So, you would think that all this acid reflux would bring that symptom back.


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## Andros

Islandgirl said:


> Andros, thanks for that link. You know I used to have the sensation of having a lump in my throat. It would come and go. When I complained to a doctor about it, (a GP) he said it's probably irritation due to acid reflux. I thought, well I have had a history of severe heartburn in the past, so maybe he's right. But, I still think it might have been this substernal goiter. Interesting that I don't have it anymore (the lump) but am actually dealing with some acid reflux symptoms lately (since going down on my Synthroid). So, you would think that all this acid reflux would bring that symptom back.


Only way to find out is to get MRI or CAT, I think. Not sure RAIU would pick it up but maybe? Depends on where it is located if indeed you do have substernal thyroid.

Good to hear from you!


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## bigfoot

Islandgirl said:


> I mean I read you can swing back and forth from hyper to hypo, but don't you mostly end up hypo as you are slowly losing thyroid function? Such a crazy disease!


That's pretty much my understanding, I think you've got it right-on. And yes, it is!

hugs6


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## Gwen1

Islandgirl- not to throw anybody off or anything, but this is ragweed season. Are you at all bothered by allergies this time of year? It's been really bad here where I live.
I agree that you need to see an endocrinologist. There are doctors out there that do not understand how to read the thyroid test results. My endo's nurse commented on that once.


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## Andros

Gwen1 said:


> Islandgirl- not to throw anybody off or anything, but this is ragweed season. Are you at all bothered by allergies this time of year? It's been really bad here where I live.
> I agree that you need to see an endocrinologist. There are doctors out there that do not understand how to read the thyroid test results. My endo's nurse commented on that once.


Truer words were never spoken.

Welcome to the board!


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## Islandgirl

Hi Gwen, sorry I just now saw your response. I thought we were notified by email of people responding to threads we'd posted on. Guess I'm mistaken. Anyway, yes I do have problems with allergies--and ragweed does bother me. But what does that have to do with anything? :confused0003:

I got my labs (the ones drawn by my GP which caused her to lower my dose of Synthroid). I still feel a little hypo, more than anything it's the slow thinking and memory issues that are bothering me. How can anyone work like this? I feel like I have dementia.

My appointment with the endo is tomorrow. My labs from the GP are below:

TSH 0.138 (0.450-4.5)
T3 Uptake 11.1 (4.5-12.0)
Free Thyroxine Index 3.7 (1.2 - 4.9)

Looks like everything is in normal range except the very low TSH.


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## Islandgirl

I saw the endo today. He thinks that the low TSH was probably a mistake. He says they are more common than we know. He also said that as someone with Hashimoto's I should eventually be requiring more replacement not less. He did ask me if I'd changed or stopped taking estrogen. I had switched to a gel, and had suspected it as well. I asked him which estrogen would be best. He said, we don't adjust the estrogen to the thyroid replacement. We adjust the thyroid to the estrogen. I thought that was interesting. I just haven't found the right estrogen in the 6 years since my hysterectomy, and so I thought maybe he'd have the magic answer, i.e. "Yes, I've noticed that Premarin is most compatible with Synthroid." Ha! No such luck. So, we are going to see what the latest labs say.


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## Andros

Islandgirl said:


> I saw the endo today. He thinks that the low TSH was probably a mistake. He says they are more common than we know. He also said that as someone with Hashimoto's I should eventually be requiring more replacement not less. He did ask me if I'd changed or stopped taking estrogen. I had switched to a gel, and had suspected it as well. I asked him which estrogen would be best. He said, we don't adjust the estrogen to the thyroid replacement. We adjust the thyroid to the estrogen. I thought that was interesting. I just haven't found the right estrogen in the 6 years since my hysterectomy, and so I thought maybe he'd have the magic answer, i.e. "Yes, I've noticed that Premarin is most compatible with Synthroid." Ha! No such luck. So, we are going to see what the latest labs say.


That is correct; glad you saw the endo and he sounds like he knows his stuff.

Hope he ran these tests?

Free T3 and Free T4 are the only accurate measurement of the actual active thyroid hormone levels in the body. This is the hormone that is actually free and exerting effect on the cells. These are the thyroid hormones that count.
http://www.drlam.com/articles/hypothyroidism.asp?page=3

How are you feeling; still out of sorts?


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## Gwen1

Hi Islandgirl, I asked about allergies because I was just curious. I have been affected by them more so this year than ever. Sorry, didn't mean to throw you off. I have Hashimoto's too, but do not have extensive knowledge on it like the moderators do. I'm at the boards trying to learn more about it.
-Gwen


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## Gwen1

Islandgirl said:


> I saw the endo today. He thinks that the low TSH was probably a mistake. He says they are more common than we know. He also said that as someone with Hashimoto's I should eventually be requiring more replacement not less. He did ask me if I'd changed or stopped taking estrogen. I had switched to a gel, and had suspected it as well. I asked him which estrogen would be best. He said, we don't adjust the estrogen to the thyroid replacement. We adjust the thyroid to the estrogen. I thought that was interesting. I just haven't found the right estrogen in the 6 years since my hysterectomy, and so I thought maybe he'd have the magic answer, i.e. "Yes, I've noticed that Premarin is most compatible with Synthroid." Ha! No such luck. So, we are going to see what the latest labs say.


Islandgirl, what did your doctor mean by "the low TSH was probably a mistake.
He says they are more common than we know." ??
Because if this is true, I'm scared. -Gwen


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## bigfoot

Good question -- I am wondering about this, too. I know from reading up here that there are the binding, blocking, and stimulating antibodies at play. I also have seen mentioned that people's TSH can change up to 5 times per day.

It would be interesting to see if this doctor is "on board" with the FT4 and FT3 usage in conjunction with TSH.


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## Islandgirl

Thanks for your input, Andros, Gwen and Bigfoot.

Andros, I'm pretty sure he is doing a Free T3 & T4. I am still waiting for the results. He said that my GP used a very old-fashioned test (the Free Thyroxine Index). He said endocrinologists don't use that test anymore. Thing is I feel a bit better, just wish the weight I gained so quickly will come off. I feel like an egg with arms and legs. Just call me Humpty. I'm also not sleeping very well. I wake up at 3 a.m. with pounding heart. Then when I take my Synthroid and it kicks in, I can go back to sleep again. I am so curious as to what the new lab results will be.

Gwen, don't worry about the "mistakes are more common than we know." This doctor evidently doesn't like Labcorp. He said he's seen mistakes in their test results. I think the bottom line is if something doesn't make sense to him, his thinking is do it again to be sure.

BigFoot, I wonder why, if the TSH can change so many times in a day, why they feel like one test every 6 months to a year is sufficient?

I have wondered more than once if I'm actually hyper and the Synthroid brings me to more of a normal state. I always feel groggier in the morning AFTER taking the pill. Then as the day wears on and I've had a few meals too, I feel more alert. Thing is when I try to stop taking the Synthroid, I feel HORRIBLE. The doc felt my neck too, and says my thyroid feels small.


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## Andros

Islandgirl said:


> Hi Gwen, sorry I just now saw your response. I thought we were notified by email of people responding to threads we'd posted on. Guess I'm mistaken. Anyway, yes I do have problems with allergies--and ragweed does bother me. But what does that have to do with anything? :confused0003:
> 
> I got my labs (the ones drawn by my GP which caused her to lower my dose of Synthroid). I still feel a little hypo, more than anything it's the slow thinking and memory issues that are bothering me. How can anyone work like this? I feel like I have dementia.
> 
> My appointment with the endo is tomorrow. My labs from the GP are below:
> 
> TSH 0.138 (0.450-4.5)
> T3 Uptake 11.1 (4.5-12.0)
> Free Thyroxine Index 3.7 (1.2 - 4.9)
> 
> Looks like everything is in normal range except the very low TSH.


You have to go into your User CP and put a check mark on the little dot.


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## Islandgirl

Well, I got my lab results back. No call back from the doctor. I had to keep calling and bugging these people, especially as I was running out of meds. They are not going to change anything as my results were:

TSH .51
Free T3 2.8
Free T4 1.2

All within normal limits. I am feeling better as I have adjusted to the lower dose. I was wondering do any of you feel more hypo after you've taken your meds, and then as the day wears on start to feel normal and then in the wee hours of the morning, before it's time for your next dose start to feel the heart pounding and a bit hyper? What does this mean? Is this normal for Hashi's or am I really hyper and being kept under control with the Synthroid?

I know one thing. I need a new Endo. This one may know his stuff, but he's lousy with follow-up.


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## Brucergoldberg

Interesting post....

I can't take thyroid hormone. I take it and my ears clog up and my ears ring. Also I feel like I've taken speed. It lasts four hours and then disappears.

But you were able to take thyroid for five years and felt fine, but then you tried to bump and felt worse?

Also I have the choking sensation. That's why I want my thyroid out too.


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## Islandgirl

It was hard to adjust to the medication. And for a a few years I was undermedicated because I had doctors that thought if my TSH was between 2 and 3, I was okay. My most recent Endocrinologist bumped me up from 35 alternating with 50 mcg. to 75 alternating with 88 mcg. And I did well on that for a couple of years. I would probably be fine if not for the fact that I have to take Estrogen. And estrogen and thyroid hormone sort of compete in the body. There's a medical term for what goes on there, but one keeps the other from working well. I've never been on the right amount of estrogen or the right kind. So, I've tried so many different ones. I most recently went on a topical gel, and it must not have competed so much with the thyroxine as the other estrogen I'd used. So, I ended up being overmedicated. The interesting thing is that when I am overmedicated, I feel hypo at first until I get used to the dose. The first time I was diagnosed with hypothyroid and Hashimoto's, the doctor prescribed me 75 mcg. It knocked me out! I slept all day. When I went down, I could function better, but never really well. I was always fog-headed, tired, losing hair and feeling the strange neck, ear and eye sensations. Then when I went back up to 75 alternating with 88, I finally felt more normal than I had in years. I'll get back to euthyroid again. I know I will because I've been there before. I'll probably go back to the estrogen I was on before, however imperfect that was. AT least I got the combination right. It's a constant struggle, but I would not have my thyroid out. I'd rather keep the little that's still in there. I've heard of too many people who have it taken out, and they aren't struggling any less.


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## bigfoot

Islandgirl said:


> I was wondering do any of you feel more hypo after you've taken your meds, and then as the day wears on start to feel normal and then in the wee hours of the morning, before it's time for your next dose start to feel the heart pounding and a bit hyper?


I think I am experiencing what you described in words, but possibly in reverse. I have been taking my Levoxyl at night before bed -- I wake up pretty groggy and tired, take Wellbutrin, apply testosterone gel, take vitamins, and go from there. As the day wears on I seem to have a little more energy later in the afternoon and into the evening. Thinking about this, perhaps I need to reverse things and take my Levoxyl in the AM again.

Interesting comment about the estrogen. Although I'm male, I also have hormone issues and use Androgel (testosterone gel). According to one doctor my estrogen is a little high, while the others are not concerned. Testosterone is finally at a good level. But I think the main point is the same that you made -- the male/female hormones compete with the thyroid hormones. One factor I've heard about is the "Aromatase enzyme": Wikipedia Link

So the question becomes how to balance the hormone issues and the thyroid issues. Do you add more thyroid hormone to boost estrogen/testosterone output, or add more estrogen/testosterone to boost thyroid hormone output? A lot of this stuff is way over my head, but it certainly makes for interesting discussions with the docs!


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## Andros

Islandgirl said:


> Well, I got my lab results back. No call back from the doctor. I had to keep calling and bugging these people, especially as I was running out of meds. They are not going to change anything as my results were:
> 
> TSH .51
> Free T3 2.8
> Free T4 1.2
> 
> All within normal limits. I am feeling better as I have adjusted to the lower dose. I was wondering do any of you feel more hypo after you've taken your meds, and then as the day wears on start to feel normal and then in the wee hours of the morning, before it's time for your next dose start to feel the heart pounding and a bit hyper? What does this mean? Is this normal for Hashi's or am I really hyper and being kept under control with the Synthroid?
> 
> I know one thing. I need a new Endo. This one may know his stuff, but he's lousy with follow-up.


Too bad you don't have ranges.


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## Brucergoldberg

islandgirl, have you considered removal or RAI?


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## Islandgirl

Bigfoot, from what I've read. Estrogen binds and Testosterone releases. So, when I have taken compounded hormones which included a little testosterone in it, I always felt better with the test.--more energy, strength, quicker thinking, and more euthyroid, but then there were other side effects to deal with because of the way the nurse practitioner prescribed them for me. I would like to get back on compounded hormones (prescribed by a different doctor), but they cost and my insurance won't pay for them. So, that will have to wait for a better day. But my endocrinologist told me that you get on the right sex hormone first, and then adjust the thyroid hormone to those.

Yes, Andros. I wish I had those too, but they were strange about me just asking for my results. And you know, I never knew before coming here that it was important to have the ranges. Why is that? Does it change from lab to lab? It doesn't make sense to me. I looked up the norms at one of the sites you sent me earlier on in this thread.

No, Bruce, I've never considered removal or RAI. And it's never been suggested to me either. I don't think I'd want the gland removed if I can help it.


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