Symptomatic but no help from doctors

[Love2swim]

I have been tested so many times over the last few years and my TSH keeps creeping up and now it is 3.38.  According to "new standards", I am hypo.  My T4 is 1.1 (range given to me was 0.8-2.0).  I am painfully tired, not the "I didn't get enough sleep tiredness".  This is painful, unable to function exhaustion.  I hate this.  I get muscle cramps.  I have been tried on anti-depressants over the years and I cannot tolerate them and none of them help (I have tried every single one out there). My depression is at its all-time low.  I have some other classic symptoms like hair thinning, hair breaking, change of texture, etc.  I am just so fed up with how I feel and now that my TSH is rising, I feel like they should TRY me on a medication to see if it helps.  I sleep so much.  I took 3 naps yesterday and got 11 hours of sleep last night, but I can't sleep enough to get me that refreshed feeling I crave.  I haven't felt 'energetic' in years.  I am in my 20's and I shouldn't be feeling like this!

How do you find a doctor that knows about hypothyroidism and is willing to try some options for someone exhibiting symptoms?  They have ruled out everything else imaginable.  

[Love2swim]

So... there is more than one antibody test?  I only had one done.  Oh man, this is so confusing!  I just don't know what to think because the TSH keeps going up and now I'm above the optimal range... and I'm symptomatic. Yeah, I know that exhaustion, fatigue, hair loss, etc can be from other things... but other things are normal.  Thyroid is the only thing remotely abnormal.  I have no family history for it.  I know 2 people with Hashi's and they are really encouraging me to get on medication.  Apparently I look worse than I though :(

Thanks again for all the information!  I hope everyone else out there is getting proper treatment!  I am counting down the days until my next appointment.  It's so hard to not fall asleep during the day lately.  My friends got me out yesterday and it was like I ran a marathon, but it was nice to not just lie on the couch.

[jeblondon]

Actually have just followed the link to the health pages - thyroid function tests - and will try to work it out from there!  Oh the brain fog.......................!!!

[jeblondon]

Thanks for that -  I will request them.  But what will they actually mean if I get them done?
J

[AR-10]

If you have not have antibody tests run, these are what you want;

TPOab, This is called Thyroid Peroxidase antibodies, and it also has three other names that I can't remember.

TSI is Thyroid Stimulating Immunoglobulin.

TGab has two names. Thyroglobulin antibodies, and antithyroglobulin antibodies. The second name sounds stupid, a double negative.

Those are the three antibody tests that you want to ask for.

[jeblondon]

Sorry should have said I am having all sorts of horrible symptoms since my pt 5 weeks ago but the docs keep telling me I am in 'normal ranges'
I totally understand about the sleep problem - my problem isn't sleeping it's trying to stay awake during the days!  So so tired all the time.
Good luck with your getting the help you need
J x

[jeblondon]

Can I just ask a question on this thread please?  What are the antibodies that you need to get checked?  And what should be looked for?
Thanks for letting me in - hope you are all ok out there?
J

[Love2swim]

Thank you everyone for your comments and help!  They did check for antibodies about a year ago and I was negative.  I do have a couple of other minor problems.  My cortisol is a little high and I have reactive hypoglycemia.  Other than that, the symptoms I listed is what is bothering me day in, day out.  I do see my internist next week but I don't know if she will take my symptoms seriously and the rise in TSH over the last couple of years.  I am moving soon, so I will have to find a doctor in my new city anyways.  I guess I will call around and try to find someone that appreciates symptoms.  I have no idea how to find someone like that though!

[stella5349]

I think the best type of doctor you would want to persue at this time - would be a GP or MD that specializes in bio identical hormones. It seems to me that these individuals understand the whole balance of hormones and treat symptomatically more so then by blood numbers.

I have found one and in my opinion - after 6 years battling terrible thyroid problems- he understands the thyroid and all the other components that balance our bodies --- more so than any of the 4 endo's I have seen. Also - all of our hormone glands - adrenals - sex hormones - thyroid and pituatary need to work together - these doctors balance the whole system -- not just pick one and think it is a cure all.

[Rite760]

Those guys are so right. I was showing normal for ages and no doc would believe me even though there were subtle changes in the bloods even when they are within the normal range. It is only now they are trying to find out what's going on. So keep pushing for more information and the right help. Good luck!

[AR-10]

Errr...I mean dai3symae has a good idea...:-)

[AR-10]

You get your records together, and you go from doctor to doctor to doctor until you find one that will listen to you and start you on a low dose of thyroid meds.

Think of it as window shopping, only more expensive.

Love2swim has a good idea regarding antibodies. Get tested for all four of them.

[dai3symae]

You sound like me.  I "normal" for years and felt terrible and also took antidepressants without relief.  Did your Dr. test for antibodies?   When mine did it came back positive and he started me on 25mg levothyroxine.  I still have many of the symtoms but....I was able to stop the antidepressants.  I feel better than I have in years.

Good luck!!!