About Thyroids

[baratron]

So, anyone know how fucked my thyroid test results need to be before I actually get diagnosed as hypothyroid? I'd sorta like to know because I have all but one of the symptoms, and my hair is falling out at a ridiculous rate. I'd also like my brain back! I'm sure I used to have one!

TSH levels over the past few years:
August 2008 - 3.81 uIU/mL(reference range 0.4 - 4.0 uIU/mL)
January 2009 - 5.16 uIU/mL
February 2010 - 4.94 uIU/mL
February 2011 - 2.88 mU/L< (I assume they changed the unit, but the numbers in the reference ranges are the same, so, *shrug*).
February 2013 - 7.72 mU/L (reference range 0.27 - 4.2 mU/L)

I'm sure there's another result that I'm missing, from February or March 2012, but I can't seem to find it. Hmm. I think it was around 5.something.

This time they finally did a T4 test as well, which came out as 11.7 pmol/L (reference range 12.0 - 22.0 pmol/L). But they still didn't bother with T3, even though the hospital consultant asked for all of them. Hmm.

While I'm recording things, I should also note that my vitamin D level is now 123 nmol/L, which is well within "normal". Finally. It's only taken 2 years of hardcore supplements.

Comments

[jinian.livejournal.com]

Even under the old rules you should've been diagnosed hypothyroid by now (TSH 4.5). And the newer standard is 2.0; some people even say 1.5 needs medicating.

[jenett]

The reference ranges are complicated (plus, this is all US experience: I don't know what the British bits of some of this are.)

Basically, in 2003, the Amercian Association of Clinical Endocrinologists decided to treat 3.0 as the borderline for diagnosis, if there were other symptoms. Prior to that, it had been 5.0. However, not everyone follows the new guidelines, and there's some variation based on lab, and so on and so forth.

I was having major major major symptoms with a TSH right at 3.0, and that + having a doctor who had trained entirely under the new ranges and was used to doing whole-body diagnostics got me treatment. (I got very very very lucky here: documenting my symptoms plus "This is stuff I used to be able to do easily, and now I can't" seems to have been very helpful)

With a TSH of 7, especially with it increasing steadily plus a weird drop, there's a much better chance of them treating it.

The thing about the thyroid is that it can go through fits and starts, if what's causing the problem is the auto-immune response (which is Hashimotos) - basically, that's when the thyroid will overwork periodically (and send you hyper, which I'm pretty sure is what it did to me briefly), and then it will go hypo (underactive) again. Which can be really hard on your body, and also really annoying.

Some info here (US focused, but might give you useful stuff to work from): http://thyroid.about.com/od/gettestedanddiagnosed/a/tshtestwars.htm

[baratron.livejournal.com]

They're really, really strict here for various reasons: partly because if you're on thyroxine you get free prescriptions for life. One of the posts I linked to above includes a brief "argument" with a doctor friend who was explaining why they're so strict here. Apparently thyroids often sort themselves out given a bit of time, so it's dangerous to start treating apparent hypothyroidism too early because people can't be trusted to go to the doctor again if they start having heart palpitations. Yep.

Quite why anyone would be too stupid not to go to the doctor when they're having heart palpitations is another question, especially as it's totally free to see a doctor here, and even more so if the medication warned you of it as a possible side-effect in very large letters, but there you are. People Are Stupid and need protecting from themselves.

[jinian.livejournal.com]

Apparently even in the US it can be really different in different places/insurances, judging by Jenett's comment! Still, with your symptoms and that last TSH number you'd think they'd want to do something about it. Good luck with it.

The advice I'm seeing more and more often for all kinds of health problems is to get quantitative about your symptoms, which does seem more important with something that doesn't have associated pustules or anything. Have you been keeping records of mood and sleep, or anything that you could correlate with those numbers?

[emperor]

A friend of mine has experience of troublesome thyroids and doctors; mind if I point them in this direction?

[baratron.livejournal.com]

That's fine, it's a public post for a reason :)

[kiya]

In the US, labs vary between thinking that a TSH of up to 3 and one of up to 5.5 is "normal". This is of course bullshit, and many/most women do best with a TSH no higher than like 1.5.

I recently changed doctors to a doctor who actually knows this, and my life is vastly improved thereby.

[jenett]

For what it's worth, the tracking that seems to have helped with my diagnosis -

- Exhaustion, on a 10 point scale (where 1 was "I would like to lie down on this floor and go to zzzzz." and 10 was "the most awake and energetic I've ever felt.") My best days for a while in there were 4s, and there were a lot of worse numbers.

- Concentration, similar scale (to try and track brain fog) with notes about how often I couldn't do things I used to be able to.

- I got a lot of hot flashes/cold shivers, and I tracked how often they happened. (At the worst, it was 4-5 hot flashes and 2-3 bouts of shivering for 20 minutes)

- I brought the Elise with me to an appointment for her to comment on noticeable changes in hair/skin, and the fact I had had to start wearing socks.

- And notes on the self-care stuff I was already doing and that wasn't helping.

the combo seemed *really* helpful

[1ngi.livejournal.com]

Hi, that friend was me.

You need a new doctor STET. They are being negligent!!!!
I am hypothyroid but have had appalling difficulty due to being borderline and needing T4/T3 to start having discussions. Your b.tests absolutely are NOT borderline, they are quite obviously hypothyroid beyond any shadow of doubt as per the current NHS guidelines! Being untreated for a long time can also lead to being a cardiac risk so it's important you get treatment. May I direct you to thyroid.co.uk for support and advice, get their info pack (£12ish) and find the helpline person in your area. They will be able to give you guidance as to how to open up a constructive discussion.

I am so sorry you are going through this, the condition itself causes anxiety and makes confrontation even more difficult than usual but I can not for the life of me understand why they will not treat you. I'm very shocked.

Wishing you all the best.

[1ngi.livejournal.com]

Also - please demand tests for thyroid antibodies - which could explain the dramatic up down results you've had. It's impossible to diagnose hashimotos from this distance but at the very least they should be ruling it out.

Good luck.

[baratron.livejournal.com]

Apparently I had a test for thyroid peroxidase (http://labtestsonline.org/understanding/analytes/thyroid-antibodies/tab/test) in January, which I didn't know about (honestly, the chronic fatigue clinic wanted so many tests and I looked up everything I could, but there were still a few mysteries). The result was "33" on a scale where "0-59" is normal. (As a scientist, I really hate having random numbers without the unit!).

Assuming that the same units are used everywhere in the world (which I don't know, since I don't know what the units were), people can have values in the hundreds or even thousands. So... I dunno. I guess my thyroid probably isn't eating itself right now?

[baratron.livejournal.com]

Oh, I suppose my original post didn't actually say. I posted that on Wednesday because I was waiting for a doctor's appointment today. (My doctor doesn't work on Thursdays and is the emergency triage doctor on Fridays, so doesn't have regular appointments). I wanted to get the research under way so I could talk to my GP with some knowledge :)

My doctor friend (who I haven't spoken to in years, admittedly) told me a few years ago that the NHS wouldn't treat my TSH until it reached 10.0 mU/L. What I've realised is that that recommendation was making the assumption that my T4 level was normal. With high TSH and normal T4, that would be a reasonable thing to do - especially considering that I'm on a medication that can cause artificially raised TSH (carbamazepine). The problem is, this is the first time that Kingston Hospital has actually done a T4 level! They won't do it unless your TSH is above some threshold even when the doctor requests it. Argh! Even now, my T4 is decidedly borderline on some lab's scales.

I still don't have a T3 reading, but I guess they'll have to do it once I'm on thyroxine. Won't they? They try to save money and end up just having to repeat the tests because the doctor isn't happy to proceed without them...