preparing for my endo referral in 2 days...

[clareyh]

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 :-)

[goolarra]

Almost all of us with Hashi's have elevated antibodies (yes, your doctor is right...it's the true test).  Some of us are TPOab positive, some TGab positive, and some both.  Hashi's is an autoimmune disease.  Once you have one autoimmune to are more likely to develop a second than the general population is to get their first.  Hashi's is the most prevalent cause of hypo in the developed world, but there are other forms of thyroiditis (usually temporary) in which antibodies are not elevated.  

"From what I've read, it's not just the antibodies that make that determination."  I don't know what you are referring to.  Please clarify.

Your U/S report indicates that your have nodules, which is also indicative of Hashi's.  I don't see any concern for thyroid cancer, but I'm also in no way an imaging expert.  A clear U/S indicates no further imaging is required.

Your FT4s are a little on the low side, but considering you're not on meds, not much of a concern.  You only have one FT3 (FT3 should be tested every time FT4 and TSH are), but that one is actually high (over range).  So, I wouldn't suspect you'd be having any hypo symptoms yet???

Whe to start meds is a controversial subject.  Some doctors want to wait until labs go out of range and/or symptoms appear.  Others want to start earlier to avoid the worst of the symptoms.  

Initial stages of Hashi's can be characterized by swings from hyper to hypo, so medicating at that stage can be tricky.  

It can take years or even decades for antibodies to do enough damage to cause symptoms, and sometimes symptoms never do appear.  On the other hand, the degeneration can be swift.  

[Otto44$]

You seem to be very knowledgeable about thyroid disease. I was just diagnosed with Hashi's. Thyroid disease is a very hard disease to understand. I was wondering if all Hashi patients usually have high TPO's Tgab's? or if it means something else also if you have a autoimmune disease? not sure of the relation to one another, after reading that some people have normal TPO's & Tgab's, and some are high as mine but both have thyroid disease. Please help me in understanding. From my understanding the true test for Hashi's according to my PCP, are the antibodies, TPO & Tgab, is this true? From what I've read, it's not just the antibodies that make that determination. Another question I've is, not sure when I should be put on something for Hashi's?  Here are my most recent results:

3/24/2012-TSH 0.236,           range: 0.350-4.940
                 Free T4 1.00        range: T4-0.70-1.48

4/16/2012-  Anti-Microsomal 599 IU/ml also known as the TPO  range: 0-34
                   Thyroglobulin Ab <20 IU/ml                                      range: 0-40

5/16/2012-TSH 0.693
                  Free T4 0.98-        range: T4-0.70-1.48
                  Free T3 3.74-        range: T3-1.70-3.71

7/5/2012-TSH 1.307 uIU/mL
                Free T4 1.04 ng/dl
                

Ultrasound report:

The right lobe measures 4.1 x 1.5x1.5 cm. The left lobe measures 3.8 x 1.6 x 1.3 cm. Heterogeneous thyroid parenchymal echotexture without evidence of a discrete nodule. My understanding is that if my ultrasound was normal, there would be no concern of thyroid cancer and no reason for a thyroid scan.

Thank you for taking the time in viewing my post.

[gimel]

Goolarra gave you some very worthwhile info to absorb and discuss with your doctor.  I know the medical system works differently with the NHS in the UK, but there are a couple of things you should emphasize with your doctor.  First is the changed reference range TSH also mentioned above.  Another is that TSH is a pituitary hormone that is affected by many variables, and studies have shown that it does not correlate very well at all with hypo symptoms.  The thyroid test that has been shown to correlate best with hypo symptoms is the free T3 test (FT3).  

Another important thing to keep in mind is that the reference ranges for FT3 and FT4 have never been adjusted like was done for TSH, where the data base was purged of  those patients that were suspect of being hypo or hyper.   If this were done for FT3 and FT4, their reference ranges would move upward and narrow significantly.  I believe this is the basic reason why, as Goolarra recommends, that FT3 and FT4 test results in the lower end of the range need to be increased with medication in order to alleviate symptoms.  Symptom relief should be all important.

[clareyh]

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 :)

[goolarra]

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.

[clareyh]

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!