Normal tests results – not my thyroid?

[roxydoggy]

Hi everyone,

I'll try to keep this as short as possible. For the last 5 months I've not been very well: palpitations, heart rates of 180bpm at rest, aching legs / raised veins upon standing, poor circulation, weight loss from 131 pounds to 115 pounds (I'm 5ft 8), fluctuating appetite, headaches, intermittent shortness of breath and tightness in throat, and so on.

My TSH level has always been around 5 / 6 – technically slightly underactive but that's just the way my body likes it apparently!

Since becoming ill, my TSH level has been 1.73 and 2.54 on two different occasions (reference range 0.27 - 4.2). On the latter test, my free T4 was also tested and was smack bam in the middle of the range at 15 (so I'm told, sorry I don't have the reference range for that). The endo also said that I had very low antibodies.

So my question is, could I be hyper since my body is clearly comfortable at a higher TSH level? Or would this not make any difference and should I keep looking for what it might be?

My heart has been thoroughly checked, nothing wrong there. They also did some other tests, I'm guessing to check out my pituitary function and parathyroid function: FSH, LH, ALP, Prolactin, PO4-3. All normal – apparently my Vitamin D levels are very good too (101).

Any insight would be really appreciated! Thank you so much in advance.

[roxydoggy]

Hiya!

Well I had ruled it out... but it just goes to show how unreliable these tests are!

I had two tests: one 11 weeks after onset of symptoms and one 2 weeks after that. My test at 11 weeks gave a negative EIA and no bands were positive on the Western blot, and my test at 13 weeks gave a negative EIA (no Western blot on that one because it was negative).

I contacted a lovely lady from Lyme Disease Action and she spoke to the RIPL lab for me to get my actual numerical values to see just how negative the tests were.

You are positive on the ELISA if you reach a numerical value of 1 or above and my results on the tests were 0.368 and 0.327, with no sub-threshold bands on the Western blot. It was what she called a 'very negative result', although suggested that if I've ruled out all other possibilities then it may be worth trying to get my GP to prescribe some antibiotics to see if my symptoms improve.

I considered getting the comprehensive tests done at Infectolab, but the same lady at the Lyme Disease Action said that the tests they run, e.g. the LTT, should be used for research purposes and not diagnostic, so you really can't trust the result either way.

I figured it's not worth driving myself crazy over whether or not I can really trust the results of these tests, because I'm sure if I dig deep enough, you can't 100% trust any test that you have done, so I could potentially have a whole host of things!

At the moment I'm just trying to rule out everything else that it may be, and if I hit a dead end, I'll try a course of antibiotics – can't hurt I guess!

I'll take a look at your post now :)

All the best.

[roxydoggy]

Okay, thanks again for your help. I think my first step is to get a copy of these results!

[middleeuropean]

Hi roxydoggy, I'm a member of lyme community, just joined, also in UK. I wondered whether you'd given up on the idea of it being Lyme?  I had neg test result first time round, about six weeks after tick bite, then another 6 weeks later I had the test redone twice on consecutive days (once ordered by GP, then reordered by ID team as I'd been admitted to hospital). Of these two tests one came back negative in all bands (and inconclusive EIA), and the other was clear pos EIA, and pos in one band of Borellia antibodies. So that's how reliable these tests are! I'm definitely pos, as had the EM rash, just recognised it late. I'm currently looking for an LLMD in the UK, got a list of 3 from ILADS. I was wondering whether you'd be happy to cômpare notes?? Maybe reply to my post in Lyme section?
Wish you all the best for getting well!

[goolarra]

With a result of 12.9, I would assume that's FT4 since he said it was midrange.  Total T4 usually tops out at about 12.

TSH is very volatile.  It can change as much as 70% just depending on the time of day the blood was drawn.  As you said, many factors can influence the result.  

Please don't give up on thyroid as a possible cause of your symptoms until you've had a more complete workup.  

[roxydoggy]

I'll make sure I ask for a copy of the results. I don't think they tested FT3, even though I asked them to! He just said 'ah, your T4 is normal...', so who even knows if it's T4 or FT4 – I just assumed it would be FT4.

No, I haven't had an ultrasound and he didn't feel my neck either. When I next see him I'll ask him to do so.

Out of interest, is it normal for TSH levels to go from around 6 down to the 1 / 2 mark? I appreciate this may not be an easy question because I expect there are lots of things that can influence the result?

Thanks for you help.

[goolarra]

Ranges vary lab to lab, so you really do have to ask for range with result.  That being said, however, 12.9 isn't typically a midrange number.  In fact, it's usually a bit on the low side.  

Did your doctor test FT3?  FT3 is the more active form of the thyroid hormones, and it correlates best with symptoms.  So, even if we say for the sake of argument, that your FT4 is "perfect", we have to know what FT3 is doing before ruling thyroid out.

Have you had a thyroid ultrasound?  Did your doctor palpate your thyroid to check for nodules?  

[roxydoggy]

Oh, I beg your pardon – my T4 was 12.9 (not 15).