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EmilyB28 03-02-2011 06:29 PM

TSH range source, and a few questions
So, I've been having a long series of health issues. It started with a recurring jitteriness, something like a really horrible caffeine high or sugar rush, accompanied by feeling like I'm way too hot. This is occasionally followed by a complete and sudden energy crash afterward (once in Sept, once end of Nov, again in early Dec, and then a few times in Jan and Feb. Nothing yet in March, but it's still early). I go from buzzing and unable to sit still to not having enough energy to keep standing while feeling like Iím going to throw up, pass out, or both in a matter of seconds.

In addition to the issue above, my hair is falling out and though I have not lost weight, I am losing body fat (my clothes no longer fit correctly, and my ribs are far more prominent than they were this summer, after having no significant change to my body in the past couple years). Iím having trouble both getting to sleep and staying asleep, despite the fact that Iím so tired Iím having trouble thinking clearly most of the day. I've started to have memory issues, where I'll be unable to remember the name of my only uncle, or the numeric codes I spend 40 hours a week using at work.

Because of all these concerns, I had a doctors appt in Dec where I asked them to check my thyroid. My TSH came back 3.34 (.45-4.5 is the lab range for normal.) The doctor said I was fine, and to try eating in a better way (which was the same as how I eat now). I've managed to get a referral to an endocrinologist, and plan to ask for more thorough testing, but I'm concerned about being written off as trying to self diagnose. I know everyone references the THS range of .3-3 as normal here, but I can't find that range anywhere more reliable than an site, which isn't quite the level of support I'd like. Is there something more reliable than that, or with a more accurate TSH range than this: ?

Beyond that, is there anything I'm missing? Does this sound like a thyroid issue to anyone else, or is it just me?

Thanks for your help!

cd37 03-03-2011 07:37 AM

Re: TSH range source, and a few questions
Sounds like a thyroid issue....and sounds like you are one of too many people not being diagnosed properly.

Knowledgeable doctors are aware of the fact that TSH higher than 2 is suspect for hypothyroidism.

And, if a knowledgeable doctor saw your TSH and heard about your symptoms, he/she would then run additional thyroid tests - the actual thyroid hormone levels (TSH is a pituitary hormone).

He/she would need to run the FreeT4 test (T4, free, direct) as well as the FreeT3 test (Tri-iodothyronine, free, serum).

I suspect your results would show one or both levels to be lower than mid-range, if not towards the bottom of the range or even below range.

Now, based upon your earlier symptoms, they sound hyperthyroid (overactive thyroid)....some of your current symptoms sound hypothyroid.

You might want to research Hashimoto's disease which is an autoimmune thyroid disease - the most common cause of hypothyroidism.

Hashimoto's autoimmune attack on the thyroid results in eventual destruction of the thyroid. As the thyroid destructs, it can often "throw off" thyroid hormones which can result in hyperthyroid symptoms (and temporary hyperthyroid levels).

Often, there is a hyperthyroid phase before the ultimate hypothyroidism sets in (but there is always the chance of those hyper moments as the thyroid destructs)

You just might want to read "What Your Doctor May Not Tell You About Hypothyroidism" by endo Dr. Ken Blanchard. He explains much of what I just shared with you as well as a great deal about hypothyroidism in general and its proper treatment.

midwest1 03-03-2011 09:39 AM

Re: TSH range source, and a few questions
The American Association of Clinical Endocrinologists is the organization that came up with the .3 - 3 guideline in 2002. They've since backtracked on that, saying that treatment wouldn't be necessary until 5+, which is disappointing. But since MDs never accepted the original guidelines, what's the use in finding what the current ones are?

The endo who confirmed my own "self-diagnosis" doesn't use TSH alone for diagnosis. She treats if there are thyroid antibodies (TPO and/or Tg), symptoms, and low-range thyroid hormones, no matter what TSH is. If there are symptoms, there are almost always low thyroid hormones - no matter how "normal" TSH appears. The fact is that antibodies quash the production of TSH, and that [u]must[/u] be taken into account.

Don't forget the antibody tests!

EmilyB28 03-04-2011 03:26 PM

Re: TSH range source, and a few questions

I'll ask them to check levels for free T3 and T4, as well as thyroid antibodies, (if only for my own peace of mind) and then if those come back low for the T3 and T4, and high for antibodies argue for being treated based that. Hopefully something will come of it.

EmilyB28 03-18-2011 07:54 PM

Re: TSH range source, and a few questions
So, I got the lab results today, and TSH is now .66, with a FT4 of .88. Antibodies came back negative. Ferritin was low, so we'll see if iron supplements help with things (although I can't see anemia would cause the sudden crashes), but other than that it's back to having no idea what might be wrong. Thanks for the advice though, clearly my body is just being strange.

midwest1 03-18-2011 09:59 PM

Re: TSH range source, and a few questions
Oh no, you don't. Not so fast.
What's the range for the FT4? That result is very low in the typical range of .8 - 1.8. It's important to know if your lab's range is narrower, though. Post it if you know it.

Your labs are not totally "normal". TSH of .66 when it was well over 3 only a few weeks ago might be due to the fluctuations of Hashimoto's disease. And TSH of only .66 wth low FT4 isn't "normal", either.

Yes, you say your antibody tests were negative, but those tests are fallible, false-negative, up to 20% of the time. Also, were [b]both[/b] antibody tests done... Both Tg and TPO? Not every MD knows which ones to run and that both are important, not just one.

So... I wouldn't let a thyroid issue drop just yet, especially if that FT4 is as low in its range as yours would seem.

EmilyB28 03-18-2011 10:20 PM

Re: TSH range source, and a few questions
I don't have a range for the t4, but would assume it's the normal range? It's mostly that the low tsh ALONG with a low t4 seems more like a pituitary problem than thyroid. The 3.34 tsh was back in early December, so it's almost exactly 3 months before the date of this test. It does seem like a big drop, but it was high when the primary symptoms seemed hyperthyroid, and low when it now seems more like hypothyroid, which also seems to point more to a pituitary issue, right? If it were thyroid based, wouldn't TSH and T4 run opposite each other? (other issues that might affect this are going of combined oral birth control between the two tests, and that the first (high tsh) test was at 8:30 in the morning, while the second (lower tsh) was at noon. If not being on estrogen based bcps lowers tsh some, and tsh drops over the course of the day, that might explain some fair amount of the change.

TPOab was the only antibody test that was run, but it came back at 1, which is far below any reference range. Most sources I've seen give a 95% sensitivity for TPO antibodies and Hashimotos, which means 5% of people would test negative while still having the disease. So, statistically someone with hashimoto's is more likely to get a negative TPO antibody test than for someone in the general population to have a pituitary tumor? I don't know....
I sort of feel like once I start arguing that I might be in all these uncommon categories (hypothyroid with a TSH in the low end of the normal range, with hashimoto's despite having a negative antibody test) I just start to look more and more like a hypochondriac who's going to ignore any lab results I get and less like someone who's actually sick.

azure7789 03-18-2011 10:29 PM

Re: TSH range source, and a few questions
Emily---Taking a different tact, what was your ferritin level and the lab range?

EmilyB28 03-18-2011 10:40 PM

Re: TSH range source, and a few questions
Ferritin was 14, and they didn't give me lab ranges for anything (I know. I should have looked at the printout before I got home, but I assumed it would have all the information, not just the raw (and unitless) numbers. I'll need to call sometime before the next appt to get the ranges and units). Most I've seen run 12-150 for women, so it's not outside the normal range, but it seems to be at the very very bottom end of it. The doctor has me on what seems to be a high end of average supplement (300 mg of ferrous gluconate 2 or 3 times a day, when the average seems to be 300 mg total per day.)

azure7789 03-18-2011 10:58 PM

Re: TSH range source, and a few questions
Emily-- While you don't have the ferritin range, I think you are way , way low. You may want to go to the anemia board at this site. There are a lot of helpful, knowledgeable people there and they will confirm how very low your ferritin is. When it comes to ferritin being so low, in range just doesn't cut it. When my level was in the mid 30s my endo wanted me to get started on iron supplements and get up to at least 50.


midwest1 03-18-2011 11:02 PM

Re: TSH range source, and a few questions
[QUOTE=EmilyB28;4710074]I don't have a range for the t4, but would assume it's the normal range?[/quote]
It's where your result falls within the particular range used that matters. Put your result into a different range and the picture can change dramatically. The lab that runs my tests uses .8-1.8, but there was a question on the board today about FT4 within a range of .61 - 1.12. Compare where your result stands in each of those ranges, and you end up with likely adequate FT4 using the narrower range and severely hypothyroid in the broader one. So range is vitally important in evaluating where you stand. Just find out from your MD's office or the lab.

[quote]It's mostly that the low tsh ALONG with a low t4 seems more like a pituitary problem than thyroid.[/quote]
Not necessarily at all. A hypo-functioning pituitary isn't capable of putting out that much TSH; it almost never can put out more than 1.0.

Hyper- and hypoT symptoms "cross over" frequently. One simply can't tell by symptoms alone what her T4/T3 levels are doing. In my early days of treatment, I became overmedicated. Before the labs were done, I would have sworn I was still hypo and needed more med, because that's what the symptoms seemed like. I was surprised when the results came back and more surprised when dropping the dose made me feel lots better.

Since Hashimoto's is the most common cause of low thyroid, it makes sense to start there instead of homing in on pituitary from the outset. That's why it's extremely important to have that Tg AB test. I've seen many cases here in my time on the board where people tested neg for TPO and highly positive for Tg. That's Hashimoto's, too.

It's my stand that you don't have to figure this all out on your own. That's what we pay doctors for. All you have to do is stand your ground and not leave the office until [U]they[/U] agree to figure it out. If they still refuse, go elsewhere.

EmilyB28 03-19-2011 01:28 PM

Re: TSH range source, and a few questions
Hmm, so working the numbers it is actually more likely that I would be antibody negative with Hashimotos than have a pituitary tumor affecting thyroid function. I just went in for an ACTH stim test yesterday, and dropped off the 24 hour urine cetacholine collection, so I should hear back about those sometime next week. I'll give the iron supplements a try, and if I'm still having symptoms that aren't improving at the follow up appointment I'll talk to her about continuing to look into thyroid issues. Thanks again.

(And I need to call the office next week to get units and lab ranges for the results. That should help get a better picture of what's going on.)

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