# Fluctuating TSH for YEARS - didn't realize it was a problem



## fullofbones (Oct 26, 2011)

So...

Back when I was a kid, I was always the skinniest on the block. So much so, we had some tests done when I was nine, and the doctor declared I had a hyperactive metabolism. Unfortunately I don't have access to those actual records, as they would be helpful to know what that actually meant.

Anyway, a few years later in high school, they did a radioactive iodine uptake test, and the weird thing is I don't remember who prescribed it, or what the results were. But since there was no follow-up, I can only assume it wasn't abnormal.

About four years ago, I started feeling cold _all the time_. It's now my mortal enemy. Besides the fact my temperature tends to be 97.6 instead of 98.6, my resting heart rate is in the low 40s and I'm hardly Lance Armstrong. What gets me though, is that I starting having unexplained bouts of sinus tachycardia, which I know because it's led to several ER visits as I have a congenital heart defect and can't screw around with that kind of thing.

One thing they wanted to rule out was thyroid issues, so of course they did a TSH test. 6.21 on a scale that suggested hypo above 5. That was back in 2008, and since then, my TSH has been tested by everyone from my GP, a psychiatrist, and yearly work-funded physicals. From those, my TSH has been as low as 2.8, and as high as 6.7 (as recently as 9/27).

I finally started connecting the dots, but it seems that regardless of my history of being hyper as a child, signs seem to indicate I'm now _hypo_. Well, I took my newly minted 6.7 and got my GP to test again, and he claims the newer 3.82 with "normal" T3 and T4 levels (I don't have those unfortunately, as he spoke with me over the phone...) said I was fine. I don't know what actual tests he ran, nor if he bothered to check for antibodies, but...

Luckily my testosterone levels are only 10 units above the minimum, which he considered "low normal," so he referred me to an endocrinologist to address that. I'm going to push for the endo to do all the real tests, and if he doesn't, I'm doing them myself.

But what should I even ask? My TSH is all over the damn place, and I'm cold all the time, but sometimes I'll have a normal body temperature and feel warm, though that's pretty rare these days. This endo seems to have mixed reviews on his propensity for listening to patients, but he's done research on iodine induced hyperthyroidism, so he seems to at least have some history working outside of just being a diabetes doctor.

Why is it so hard to get any kind of diagnosis with this? Why is nobody following the new AACE recommendations that were made in freaking 2002?! If they were, I would have known about this back in 2008, or even earlier. Being hypo with a heart condition is considerably dangerous, so I need to get this resolved ASAP, and certainly letting it develop for at least three years wasn't helping me.

This is all pretty new to me, so sorry if I was ranting.


----------



## Andros (Aug 26, 2009)

fullofbones said:


> So...
> 
> Back when I was a kid, I was always the skinniest on the block. So much so, we had some tests done when I was nine, and the doctor declared I had a hyperactive metabolism. Unfortunately I don't have access to those actual records, as they would be helpful to know what that actually meant.
> 
> ...


Hi and welcome. I do think that you need some tests besides the TSH.

These.........(unbound hormone available for cellular uptake)

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

And antibodies and immunoglobulins...........

TSI (thyroid stimulating immunoglobulin),TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.

You can look this stuff up here and more.........
http://www.labtestsonline.org/

TSI
Normally, there is no TSI in the blood. If TSI is found in the blood, this indicates that the thyroid stimulating immunoglobulin is the cause of the of a person's hyperthyroidism. 
http://www.medicineonline.com/topics/t/2/Thyroid-Stimulating-Immunoglobulin/TSI.html

Also, most of us feel best when TSH is 1.0 or less and the FREES @ about 75% of the range given by your lab.

Some doctors are privy to this and will work with the patient until that person feels well.

"If" you get any of the above tests, please be sure to get copies so you can not only post results but the ranges also. We need the ranges as different labs use different ranges.

Sorry you are having such a hard time of it.


----------



## fullofbones (Oct 26, 2011)

Andros said:


> Free T3 and Free T4 are the only accurate measurement of the actual active thyroid hormone levels in the body.


Right. I'm not sure he took those, and like I said, I just found out last night that he's passing the buck. The latest FT3 and FT4 I have are from early last year (Jan 2010). FT4 was 1.15 ng/dl (0.71-1.81), and FT3 was 3.2 pg/ml (2.3-4.2). _Those_ numbers are pretty much right in the middle of the ranges. But with that much stimulation, shouldn't they be way higher?

And I didn't even see this, but I also had a PTH of 20 pg/ml (10-65).

And all that was on the day my TSH was 2.87.



Andros said:


> And antibodies and immunoglobulins...........


The only andibody test they ever ran (that I know of) was an ANTI-TPO IGG, and that was 0.2 IU/mL (< 20 = negative).

I plan on pushing the endo (if he doesn't suggest it himself) to test for the rest of them.



Andros said:


> Also, most of us feel best when TSH is 1.0 or less and the FREES @ about 75% of the range given by your lab.


Interesting. I figured being slam in the middle of the range is where they wanted you to be. When I see the endo on the 31st, I'm going to ask for a copy of all the labs they ran just so I have them. My last GP, you could log online and view labs any time. Heck, it's partially the way I tracked all the fluctuations down.

Anyway, thanks for the help. I just personally find it odd that I have _any_ symptoms for hypo considering my past. It's like I burned out my thyroid or something.


----------



## Andros (Aug 26, 2009)

fullofbones said:


> Right. I'm not sure he took those, and like I said, I just found out last night that he's passing the buck. The latest FT3 and FT4 I have are from early last year (Jan 2010). FT4 was 1.15 ng/dl (0.71-1.81), and FT3 was 3.2 pg/ml (2.3-4.2). _Those_ numbers are pretty much right in the middle of the ranges. But with that much stimulation, shouldn't they be way higher?
> 
> And I didn't even see this, but I also had a PTH of 20 pg/ml (10-65).
> 
> ...


Okay; bearing in mind these are year old labs, we will just run through the mechanics.

FT4 mid-range is 1.26. So, that is way low.

FT3 mid-range is 3.2 and as you say, you are smack dab. Not good. This is your "active" hormone and should be about 1/4 above the mid-range of the range provided by your lab.

And, TPO Ab suggests something is afoot.

You could be flipping back and forth and that is why the antibodies and immunoglobulin tests are so important as there are binding, blocking and stimulating of the former to the receptor sites.

This will skew the thyroid panel results by the way. It's the body's attempt to right it's self. Well, that does reflect in the numbers sometimes but meanwhile the patient is very ill.

And the symptoms are not carved in stone; they can cross over. We each are soooooooooooooooooo different.


----------



## bigfoot (May 13, 2011)

Andros said:


> And the symptoms are not carved in stone; they can cross over. We each are soooooooooooooooooo different.


Isn't that the truth!

fullofbones: Glad you have taken it upon yourself to track down your health issues. I hope the endocrinologist works with you on testing and getting to the bottom of things!

I can totally relate -- went through years of chasing mysteries, with sleep studies, cardiologist visits for fast heart rate, various PCPs, ER visits, gastroentrologists, and now endocrinologists. You are right, it is so frustrating!

Interesting about you having low testosterone -- same thing here. I was in the 229 area for Total T. Be sure to ask about getting Free Testosterone and Testosterone Free % checked, too. But I am sure the endo will be running those and more. Other things that come to mind are the Prolactin test which can help look at your pituitary gland function, Iron/Ferretin tests, and regular PSA tests (if you wind up on hormone replacement for testosterone). Also, adrenal/cortisol tests to check up on your adrenal gland function.

Be sure to ask the endo WHY your testosterone is low. No one did that with me and my PCP prescribed me testosterone gel. In the meantime we have no idea why the "T" was low to begin with. There is definitely a connection between thyroid issues and other hormones (testosterone, etc.). It may be that your thyroid is the culprit. Other things that may be affected are cholesterol, glucose, and heart issues (as you know).

hugs6


----------



## fullofbones (Oct 26, 2011)

Andros said:


> FT4 mid-range is 1.26. So, that is way low.
> 
> FT3 mid-range is 3.2 and as you say, you are smack dab. Not good. This is your "active" hormone and should be about 1/4 above the mid-range of the range provided by your lab.
> 
> And, TPO Ab suggests something is afoot.


Interesting. Let's say 75% of the 0.71 to 1.81 range is 1.53. My 1.15 is 25% lower than that. I can see how that's not ideal. And 75% of the range of 2.3 to 4.2 is 3.7, so my 3.2 is 13.5% low. Assuming it hasn't gotten _better_ in the last year and a half, your little 75% rule tells me more than just the ranges did. And that's under high TSH. Now I really want to see the new FT3 and FT4 numbers to see how they've changed.

But why did you say my 0.2 reading on the TPO lab suggested anything? That's like a trace reading, isn't it? Or should the presence of those kinds of antibodies always be zero?

Huh. More reason for me to bust some heads, I guess.


----------



## fullofbones (Oct 26, 2011)

bigfoot said:


> Interesting about you having low testosterone -- same thing here. I was in the 229 area for Total T.


My total Test was 239 at the end of September (9/27), and 285 last Friday (10/21). So... yeah. My libido is in the toilet and I've lost all motivation to go to the gym. I'm 34, not 64. :/



> There is definitely a connection between thyroid issues and other hormones (testosterone, etc.). It may be that your thyroid is the culprit. Other things that may be affected are cholesterol, glucose, and heart issues (as you know).


That's the other thing that ****es me off. My LDL was 95 in 2007, and now it's 140(!?) even though I haven't changed _anything_. Heck, I just finished being with a personal trainer for ten months, and probably eating healthier than I have in years. I also found out through my reading that Hypo can lead to ulcers. I just happened to have one of those a year and a half ago, and my gastro said tests for H-Pylori were negative. So I've got intolerance to cold, rising LDL, low BHR, high TSH, low to mid-range FT3 and FT4, a history of ulcers, and now low Test, and _none_ of that sounds suspicious? I could take blood tests and look at lab ranges myself... why do I need a doctor to look at a sheet of paper and say, "Everything looks normal!"

Grr.

Hopefully the Endo doesn't take that approach, or I'll probably explode.


----------



## fullofbones (Oct 26, 2011)

Ok, so an update.

Saw the Endo today, and he says my thyroid is about 25% inflamed. Within five minutes of seeing me, he suggested Hashimoto's. But he also said a few things that partially confused me.

He said that a TSH of 6.87 isn't that high, and that my FT3 and FT4 are normal based on my last reading on the 21st of October.

TSH = 3.82 (0.4 - 4.0)
FT4 = 1.04 (0.58 - 1.64)
FT3 = 2.6 (2.3 - 4.5)

So falls within the ranges, but my FT3 is almost at the bottom of the scale.

Here's what I don't get. He's putting me on 25mcg Levothyroxine, but he flat out said he didn't think it would do much. That "a hundred endocrinologists would all say a TSH of 3.82 is normal," and "even your 6.87 isn't high enough to show symptoms. Though I do have some patients where being above two will make them feel terrible."

It sounds like he thinks I might be extra sensitive, so he did decide to give me a very small dose, but his attitude that it's basically pointless is odd, especially given my thyroid is actually inflamed, and he seems to think I have Hashimoto's. What do I have to do, wait until it destroys my thyroid before it's considered a problem? I also don't get that my T3 is practically bottoming out, but he'd only prescribe T4. Is that good or bad?

I'm in the Chicago area, and he says the head of the AACE works at Northwestern with him, so I get the feeling they'd all give me the same answers. :/


----------



## northernlite (Oct 28, 2010)

I am Hashi's, diagosed with both TPO and TgAB antibodies. My TSH was 6.4 the first time and two weeks later 8.4. My FT4 looked very similar to yours and has always been in range. I was incredibly symptomatic when I was diagnosed. Almost non-functional fatigue, brain fog, joint and muscle pain that worsened as the day went on, hair falling out, etc.

He is dead wrong that 6.87 isn't high enough to show symptoms and I would be extremely symptomatic at 3.82. The new max for TSH is supposed to be 3.0 and you are above that. At a TSH=2.0 I am fairly functional but unacceptably symptomatic. Each person is different and you have to find the TSH and FT4 and FT3 where you feel well. I am still on the hunt for it but for me it is under 2.0.

25 mcg is a very low dose but it will be interesting to see if you feel something on it. If you do and it is not enough, get back to him and keep pushing for more until you feel well. T4 is the right place to start. If all is working correctly, your body makes its own T3 from the T4 made by the thyroid. You are replacing the missing T4 so hopefully your body will convert that correctly to T3.

Many of us do not see Endos including me. Alot of us have better luck with a GP or Internist. But you did get started on some medication with this guy so I would see how it goes and see if it helps you.


----------



## fullofbones (Oct 26, 2011)

northernlite said:


> 25 mcg is a very low dose but it will be interesting to see if you feel something on it.


Well, beyond his thinking that it won't change much of anything, I have several congenital heart defects, so he has to be careful. He said he wants to get my TSH between 1 and 1.5, so he might increase it again. He wants to see me again in three months though, which doesn't match the 6-8 weeks guidelines seem to suggest.



northernlite said:


> Many of us do not see Endos including me. Alot of us have better luck with a GP or Internist. But you did get started on some medication with this guy so I would see how it goes and see if it helps you.


My endo says my GP is one of the best doctors at Northwestern, but he took one look at my numbers and said, "These look normal." Why is it that every time I actually go to a doctor and they look specifically at my TSH levels, they go from being somewhere in the 6's to falling into the high end of their lab ranges? It's annoying.


----------



## Fissy (Sep 20, 2011)

Are you still very thin? 25mcg might help. In my case, just 50mcg is enough to push my FT4 into the upper mid range even though my thyroid borders on non functioning due to Hashimoto's.

Good luck and I hope the medication will help you feel better.


----------



## fullofbones (Oct 26, 2011)

Fissy said:


> Are you still very thin? 25mcg might help. In my case, just 50mcg is enough to push my FT4 into the upper mid range even though my thyroid borders on non functioning due to Hashimoto's.
> 
> Good luck and I hope the medication will help you feel better.


Thanks for the wish. 

But noooooo, I'm not thin anymore. Up to 2006, I had 9% body fat and weighed about 140 (I'm a 5'8" male). Now I'm more around 160. I just don't have the energy to work out anymore. But I guess I have to find it anyway.


----------



## fullofbones (Oct 26, 2011)

Cautiously optimistic here, but... I feel _amazing_ right now, despite only getting four hours of sleep due to unforeseen circumstances.

I can't really explain the quick turnaround based on what I've read. But I'm still new to this. I'm assuming I'll have fluctuations.

Going to call on Friday if they don't get to me first, so I can get the results of my TPOAb, TgAb, and FSH tests. Based on that, should I bother with rT4, rT3, and TPI tests? Maybe get an ultra-sound to make sure I don't have any cysts, or are those normally palpable?

Thanks everyone!

*Edit:* False alarm. I think I was just getting over a cold or something. Everything went back to cold/tired the next day. :/


----------



## fullofbones (Oct 26, 2011)

Ok,

So my endo just called me this morning (?!) and says he's going to mail the actual results to me. But he said my antibody tests are negative. What I _didn't_ expect, was for him to decide I need T3 now.

So when he thought my thyroid was inflamed due to Hashi's, that's just T4 and see him in three months, but with a negative antibody test (he only tested for TPOAb and TgAb), that's T3 twice a day _and_ T4. I won't know what he meant by "negative" until I get the actual results, but now I'm actually more baffled than before.

Of course, I feel like an idiot for not thinking to ask him that while I had him on the phone.


----------



## Andros (Aug 26, 2009)

fullofbones said:


> Well, beyond his thinking that it won't change much of anything, I have several congenital heart defects, so he has to be careful. He said he wants to get my TSH between 1 and 1.5, so he might increase it again. He wants to see me again in three months though, which doesn't match the 6-8 weeks guidelines seem to suggest.
> 
> My endo says my GP is one of the best doctors at Northwestern, but he took one look at my numbers and said, "These look normal." Why is it that every time I actually go to a doctor and they look specifically at my TSH levels, they go from being somewhere in the 6's to falling into the high end of their lab ranges? It's annoying.


If you have congenital heart defects; all the more reason to get your "numbers" right. You may have to seek out another doc. If this one leaves you stuck @ 25 mcg. just to appease you, you can get to feeling bad.

There is only one right dose for thyroxine replacement and that is the "one" for you. It has to be titrated as needed otherwise you can feel awful.

Just a word to the wise.................; and that would not be good for your heart.

Maybe your cardiologist can work w/you or get you in to see a doc who understands this stuff.


----------



## fullofbones (Oct 26, 2011)

Andros said:


> If you have congenital heart defects; all the more reason to get your "numbers" right. You may have to seek out another doc. If this one leaves you stuck @ 25 mcg. just to appease you, you can get to feeling bad.


Well, that's part of the reason he said he started so low, which doesn't really surprise me. Hypo is long-term bad, but with a congenital defect, too much T4 too fast would be more immediately problematic. I just picked up the 5mcg Liothyronine prescription, and it's apparently just for two weeks until he thinks the Levothyroxine starts kicking in. That makes sense, I guess. I'm still not quite sure what made him decide that _now_ instead of last Monday.

I plan on bringing this up with my cardiologist the next time I see her. Usually I see her every six months, and I think the last time was in March, so I'm actually a little overdue. I think I need to also call in to my GP to discuss all this with him, to at least ask about the goiters and the fact the endo put me on T4. Throwing in the T3 doesn't sound like placation anymore, so maybe there's enough of a medical basis I can get more info.

Fun times!


----------



## Andros (Aug 26, 2009)

fullofbones said:


> Ok,
> 
> So my endo just called me this morning (?!) and says he's going to mail the actual results to me. But he said my antibody tests are negative. What I _didn't_ expect, was for him to decide I need T3 now.
> 
> ...


You are right. The word negative is grossly misused. I will be anxious to know as well.


----------



## fullofbones (Oct 26, 2011)

Ok, so I've been bereft in my duties here. My results for TPO-Ab and Tg-Ab came back:

Tg-Ab (0-0.5 units) : 0.1
TPO-Ab (0-100 units) : 17

Based on this, I'd say I _don't_ have Hashimoto's.

I also convinced him to run a couple other tests:

LH (1.2-8.6) : 1.8 mlU/mL
Prolactin (2.64-13.13) : 10.12 ng/ml

Based on what I've read, LH is basically irrelevant and seems right on the money anyway. But my Prolactin levels seem a tad high for a male, but more importantly, it's a pituitary hormone. And this: "High prolactin can result from a tumor in the pituitary gland that synthesizes prolactin without any physiologic regulation. Other causes of elevated prolactin include high levels of TSH from hypothyroidism..." So I now have two pituitary hormones approaching or above suggested ranges. But... are they _high enough_ to warrant further testing?

The endo seemed to think not. I may get a second opinion just so I have my bases covered.


----------



## bigfoot (May 13, 2011)

fullofbones said:


> So I now have two pituitary hormones approaching or above suggested ranges. But... are they _high enough_ to warrant further testing?
> 
> The endo seemed to think not. I may get a second opinion just so I have my bases covered.


And there is the problem. You are seen as "within range" so there is no issue in the doc's minds. Might not hurt to get that second opinion...


----------

