Flipping out...TSH of 18???

[lindajoy]

Hi, everyone,

I just got my hospital records from my last hospitalization (was in with gastric issues), and my TSH level was run, along with my T4. T4 was just low at 8.0 (scale 8.9 on up). But, my TSH was noted at 18.1!!!! Just a week ago, it was 4.1.

Yes, I have low thyroid, along with everything else. It's subclinical, goes up and down, and since I have few to no symptoms, I've opted to not treat it yet, until I get a thorough evaluation from a new endo out of state next week. But, when I found this TSH number on my records, I'm panicking here. I know nothing about thyroid, nothing about TSH, nil.

Can this number be right? Can it actually be that high? What does that mean? Can my thyroid just give out and kill me now? I've read about myxedema. I know it states it's uncommon, but hey, with a TSH this high...

Can anything cause TSH to go high, besides thyroid, like pain meds, anesthesia, ppi's, etc? I was put on all kinds of new meds right before this test was done, so could it not be accurate, or could my thyroid have been being affected by these things and be lower now?

I'm so sorry, I know I'm panicking here, which I am.

Thank you.

Linda

[Vlal]

What's your Free T4 and Free T3?

TSH can go a lot higher than that, but I think that seeing you as have hypothyroidism, it is as good a time as any to think about treating it. From what I have read during my research and if I have understood it correctly, subclinical is borderline and usually seems to occur when the thyroid is 'blipping' eventually leading to hypothyroidism. If my understanding is correct, then it seems like you have gone from subclinical to actual hypo.

You may find this interesting and somewhat reassuring to read: http://www.medhelp.org/posts/Thyroid-Cancer--Nodules--Hyperthyroidism/Extremely-high-TSH-level-117/show/262707

[Vlal]

P.S. re-read and noticed T4 at 8.0, but is that Free or not? If it is out of range, it should be treated in my opinion as even at the lower end of normal it can make you feel very unwell. My test results from past 2 thyroid tests indicate mine is mucking around and I am sure that is partly why I have felt so unwell at times.

[lindajoy]

Hey, Vicky,

Imagine seeing you here! Thanks for the replies. My pcp is supposed to order another TSH, just to be sure it wasn't lab error or maybe a reaction to the anesthetic I had just had the day before. Then, if it's still high, I'll be sent to the appropriate people, he said, which would be the endo I'm seeing next week, I'm assuming, because the local endo just doesn't do a whole lot.

I'm wondering how much my pituitary has to do with this, as my TSH bounces around like a ball, my T3 is totally normal, and my free T4 is just at normal (so low normal, I guess).

All this came about, as I told Bob before, after my AI crisis and my starting HC. Could that suppress the thyroid?

Linda

[Vlal]

Well your pituitary gland is responsible for TSH output so I think it makes sense that if you have some form of tumour there, that it would bounce around a lot or you would see none or loads etc. I guess what would be the real issue is that seeing as TSH then has a direct impact on T3 and T4, whether these are being supressed or inflated as a result of the TSH fluctuations because if it is causing your thyroid to go either hyper or hypo, then that would be a problem.

I think that is a good thing you are getting a re-test as that will eliminate lab error and it will be useful to see if the change is somehow related to your AI episode. However, some doctors (that I have read about online) feel that a TSH above 2.0 merits investigation/treatment of hypothyroidism, so even at 4.1 the endo may want to do something about it. Mine was 2.71 in June last year and my free T4 was on the lower side of normal. I am keeping my eye on it, even if my endo isn't!

[lindajoy]

Thanks, Vicky. I am so reluctant to treat anything anymore until I get to a good endo. I'm tired of band-aids. If I was currently on every medication every doctor over the years had put me on, I'd be downing 100 pills every day, most of them anti-anxiety meds and anti-depressants. I want to get to the root of the problem, which I think is pituitary, and get rid of it, thus eliminating the need for all of these other medications, or at least downsize the need for so many.

Maybe I'm living in la-la land to hope for this "miracle root cause and cure," but I don't think seeing a million specialists over the years and being prescribed a million different pills (slight exaggerations, of course) have helped much either, so...

My husband called the CC endo about the Free IGF-1 test he wants me to take if it's still available (anyone here know anything about a Free IGF-1 test?), and he asked him about my TSH jumping from 4.1 to 18.1 in a week's time. He said it was probably due to stress and illness, that while in hospital was not a good time to check TSH. He said my T3 and T4 were both good, so he wasn't worried about it. I had it re-tested today, so should know results tomorrow.

How are you doing? Have you emailed the new doc yet?

Take care and thanks again,

Linda

[Vlal]

Yes, I can understand how you feel and I can completely empathise with not wanting the band-aid, but wanting to find the true cause and get it sorted. I think sometimes with pit tumours it causes the person to go into hypothyroid hence why some people end up taking thyroxine or whatever. However, as you say, they need to establish why/if it is a long term thing etc before making a decision. That is quick for the test results!

I have not heard of free IGF-1 test. Hmmm!

I just yesterday sent a letter to my current endo to ask him how I go about getting copies of my results from my tests (it was not clear on the hospital website) and I updated him on new symptoms and developments. I then have asked him to update me with what is happening as I have not heard from him since the end of December. Once I hear back from him, I shall then make a decision over whether to email the docs I was looking at.

V-L

[lindajoy]

Hi, again,

The free IGF-1, according to the CC doc, is a test they used to do--he doesn't know if they still do or not, he has to ask one of their specialists about it and that person is out until later this month--that measures the actual IGF-1 in your blood that isn't bound by one of the IGF binding proteins, like IGFBP-3, the one that is high in me. He said this Free test would show how high my actual IGF-1 is, and how much is circulating that could cause damage.

My question is, if the regular IGF-1 is sooooo inaccurate that they have to do a free IGF-1, then why did they stop using the Free IGF-1 and stick with using only the IGF-1, many docs all over the world calling the regular IGF-1 an accurate test for acromegaly in and of itself? But, who am I?

Oh, and thank you for sending that site where people talked about how high their TSH levels got. My 18 seems kind of lame compared to some of theirs!

Take care and hope you get some news soon.

Linda

[Vlal]

I don't think it's lame, but I thought that it might help you as you said you were flipping out LOL!

That's interesting about free IGF-1. The thing I don't understand = is he saying if IGF-1 is bound to IGFBP-3 it is not harmful and will not cause an upsurge in GH? Does that mean if your free IGF-1 is low then you won't have the growth issues? It seems rather odd. I know that I have read of IGFBP-3 tests and high results in the context of acromegaly, so I am trying to understand why there would be any concern over IGFBP-3 results if the actual thing is not important - does not have detrimental effects/impact elsewhere. I am not sure if I am making sense... it's hard to write this stuff without confusing everyone.

[lindajoy]

Actually, Vicky, I understand you completely and thought the same things. What I've read about IGFBP-3 said that it's an even better indicator of high GH in the system since it's the transporter of both GH and IGF-1, so if it's high, it means there's a lot of GH to be transported. Mine is high, so is my IGF-1, but apparently, still not good enough.

Yes, that's exactly what the doctor is saying--if my binding protein is high (I guess the IGFBP-3), then the IGF-1 may be binding to it and won't be "free" to damage my body; I guess it will just be flushed away, then. My husband didn't even buy that, from what we've read, and he's usually one to believe all he's told from anyone and everyone. He thinks the doctor is just blowing it off again. But, since I don't know anything about Free IGF-1, I can't totally ignore what he's wanting to do in testing it. Ugh. Why can't any of this be easy?

I wanted to tell you, too, that my latest TSH test showed it came down by 11 points, from 18.1 to 7.2 within eight days. My doctor said it should since he says it was caused by severe stress, illness, and meds while in the hospital. He said it would take a couple of weeks to go back to normal, and since my T4 and T3 are normal, he's not concerned. I would like it re-tested again in a couple of weeks, just to be sure. I see my new endo next week. I'm sure he'll want it tested, too.

Take care. I hope this finds you doing well.

Linda