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Avatar universal

preparing for my endo referral in 2 days...

Hey everyone,

Wondered if anyone can help me in what the important things to stress to the endocrinologist i am seeing this thursday are:

The history of my TSH levels are:

Dec 2008: 7.5
Feb 2009: 5.8
May 2009: 5.7
September 2009: 7.2
October 2009: 5.7

obviously they are not consistant, I have just had my Thyroid antibodies tested and the levels are normal- ruling out anything autoimmune. I have had a full blood work done for which everything else was ok.

I have over the last year suffered from: muscle weakness, tiredness, bad joint pain, extreme coldness in feet hands and nose, have gone from u.k size 4 to u.k size 8 (which doesnt bother me as i have always been too thin!), a very slight numbess in my left leg (and sometimes in my left arm), irregular periods (that are heavier than they used to be), TMJ pain (dont know if this is related or independent from thyroid problems), noticed a lot of hair falls out in the shower and when brushing, brittle nails, dry itchy eyes, vertigo (although i feel this is more related to my TMJ and grinding my teeth in my sleep).

my main worry is that my G.P keeps saying, oh, your not much over the lab range (which upper limit is 5.5) and i get so annoyed as it is still over the threshold, even if 'not by much'. She keeps trying to prescribe me mild forms of an antidepressant for my anxiety, but i keep trying to tell her that I seem so anxious because I have been feeling like this for a YEAR now and no one is doing anything.

I am worried the endo will say the same thing? Does anyone know whether they use more sensitive lab ranges or will maybe trial me on some kind of meds? I am just wondering what to expect really, and if anyone has any advice as to what I can say to insist my case.

thanks in advance for any help anyone can give,

Clare :-)
45 Responses
Avatar universal
I will also mention I am U.K based (and therefore NHS treated) as opposed to U.S.A based.
Avatar universal
Here, in the U. S., the currently accepted range for TSH (as defined by the AACE) is 0.3-3.0.  Unfortunately, most labs and doctors have not caught up with the new range and still use obsolete ranges.  So, by the "new" standards, your TSH is higher yet than you thought.

Do you have the actual numbers for FT3 and FT4 (and their reference ranges)?  I'm willing to bet that one or both is in the low end of the range.  That, coupled with your symptoms, makes you hypo.

Here's an article I wrote a while back because we hear of this scenario so often on the forum.  Disclaimer:  I'm not a doctor, this is my opinion.  I hope it will give you some ideas to help convince your doctor to start you on a trial dose to see if it helps symptoms.

Proper Use of Reference Ranges in Treating Hypothyroidism:  Some Ideas to Discuss with your Doctor

Many hypo patients or undiagnosed hypo patients have an array of hypo symptoms, yet their lab work (free T3, free T4 and TSH) indicate that they are within the reference ranges that doctors erroneously refer to as “normal”.  TSH is often high in the range (or maybe even above the range according to the latest standards of 0.3-3.0 which many labs and doctors still refuse use) and FT3 and/or FT4 are low in their ranges.  Many doctors think that if labs are anywhere within ranges, their job is done...patient is no longer hypo, any remaining symptoms are not thyroid related, patient is fat and lazy.  NOT TRUE.  

Please see illustration below.  Each of us has a personal reference range within the population reference range at which we are euthyroid (neither hypo nor hyper).  A shift in lab values of the individual outside of his or her individual reference range, but still within the population reference range, is not normal for that individual.  Many don't feel well until FT3 and FT4 are in the upper half of the ranges.  After all, the population ranges of FT3 and FT4 are statistically determined distributions of patient results; by definition, approximately half the population will be euthyroid in the top half of the range and approximately half in the bottom.  If you are one of the people whose personal range must be in the top of the ranges, and your doctor won’t treat you or won’t fine-tune your medication when your results are in the bottom of the range, you are left hypo.  Your doctor may tell you your labs are "normal", but they are NOT “normal” for you.

Reference ranges of test results do not imply that everyone is going to be well as long as they are anywhere in the ranges.  The ranges are broad (e.g. 0.6-2.0 for FT4).  If your personal FT4 reference range was 1.6-1.8 when your thyroid was functioning properly, does it really make any logical sense at all that now that you are on replacement hormones, you should feel comfortable with an FT4 of 1.0?  No, it doesn't.  We all have a set point that is optimal for us...doctors should be finding it and adjusting medication to it.

If labs are within ranges, it's time for fine-tuning (or initiating a low dose trial)...increasing meds slightly if hypo symptoms are still present.  This will move FT3 and FT4 up in the range and alleviate symptoms…that’s the goal.  The ranges define the universe in which we can freely adjust medication; its entire breadth from lower limit to upper should be used for this purpose.  The patient will still be in the reference ranges, but he or she will no longer be symptomatic.  

Illustration:
                                                 Personal
                Current                      Reference
                  Level                          Range
0.6               1.0                       [1.6……1.8]          2.0
|-----------------Population Reference Range-------------------|

With an FT4 of 1.0, patient is still hypo according to his/her personal reference range.
Avatar universal
wow, thanks!! that is really helpful. I will pop into my doctors tomorrow and see if they can give me my other results, as i only know my TSH levels.

i am so scared the endo says no to trialing me on meds as i feel so horrid!

Thanks so much for your reply, much appreciated!

:)
Avatar universal
Well I saw the endo today..

I dont quite know all results as it is all so confusing but I know that:

TSH- 5.5-7.8
T4: 11-14 ...not sure what this means!

Anyway they said it was borderline and may not be causing my symptoms but as I was so sure they have put me on thyroxine 25mg for 6 weeks, then I go back for more tests and a review.

I feel like this will never end!
Avatar universal
What;s the range on your T4?  And is it total T4 or free T4?  Your TSH is 7.8?  Is that correct?

I think it's excellent that they started you on a low dose - some doctors are just impossible to convince.  You have to be patient...thyroid stuff cannot be rushed.  It takes six weeks for the meds to reach a stable level in your body, so you just have to wait that long between each meds adjustment.
Avatar universal
he was a bit hazy on T4, i got the impression it is a bit high, but not by much.

my TSH is too high in my eyes, their range go up to 4.5 and the endo thinks its not high enough to cause my problems. All I can do is try the low dose trial and see how it goes.

Thanks again for all your help, it was very useful :)
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