what to tell doctor freaking out about suppressed TSH...?

This is something that I have been wondering more and more about lately, especially since living in a system where you have a doctor for every ailment...meaning you could easily be sent to the lab five or six times a year to have the same tests, depending on which doctor ordered them

I know most doctors freak out at the sight of a suppressed (<0.01) TSH. I used to think I could go off NDT and back on T4 only long enough to make my TSH return to normal...not so. I think my TSH has been suppressed for so long that it's not just going to bounce back to "normal" (= anything above 0.1 or 0.2 and below 4.0 or 4.5 or whatever the lower normal range of the lab).

I feel so good on NDT that there is no way I'd be willing to go off it even temporarily...so, since I imagine there any others like me out there, that is, doing well only on TSH suppressive doses of either NDT or T3 or any combination thereof, what do you tell your GP when s/he freaks out about your suppressed TSH...???

[Clutter]

Anna69,

My thyroid is managed by my endo so GP is unlikely to interfere. Endo says I'm over suppressed at <0.01 and would like TSH around 0.05 which is still suppressed. 2 Levothyroxine dose reductions in one year and another Levothyroxine dose reduction last year didn't budge TSH but FT4 and FT3 dropped quite a lot and I started to feel less well so I refused to accept a further dose reduction. Had the same conversation in May at my annual consultation and again refused to reduce dose.

[Hidden in reply to Clutter]

Thank you, Clutter! Interesting how we all have to fight to find the dose of thyroid hormone replacement we feel well on, isn't it...? Thanks for telling me your story! What has happened to you since...? Have you reduced your dose further...? If not, how is your doctor taking it...?

[Clutter in reply to Hidden]

Anna69,

She seems fine. As she says, it is her job/duty to advise me but she can't force me to do as she advises. She has ordered another DEXA scan to see whether there is any change from the mild osteopenia I had 3 years ago. I'm still waiting for the appointment. I suspect they've forgotten and I'm not sure whether to chase it up.

[Hidden in reply to Clutter]

Good to know...that nobody can force me to do anything against my will, I mean...!

[shaws in reply to Hidden]

Except they force us to take levothyroxine and rarely an alternative.

[stoneym in reply to Clutter]

I was diagnosed with osteoporosis in 2003. I believe I was hypothyroid then, unknowingly and undiagnosed and wonder if untreated hypo actually contributed to it - not the other way round.

Also diagnosed with tachycardia and arrhythmia >15 years ago - whilst hypo..

When I point these out to GPs they just go quiet.

[Clutter in reply to stoneym]

Stoneym,

I had mild osteopenia only 2 years after taking Levothyroxine to suppress TSH. I doubt that caused it and it was more probably the early menopause before 42 and severe vitamin deficiency discovered months before my DEXA scan which caused it.

[avocadopeardrops in reply to Clutter]

Admire you for refusing to reduce the dose. What did you say?

[Clutter in reply to avocadopeardrops]

Avocadopeardrops,

I told her I felt colder and a little more tired and wasn't willing to reduce further and if she reduced my prescription I would buy what I needed online. It wasn't confrontational. She was accepting of my reasoning although she still felt it would be better for me if TSH was higher.

[shaws]

The blood tests were invented for the use of levothyroxine alone.

Taking NDT cannot compare with levo (T4 only) as NDT has T4, T3, T2, T1 and calcitonin. I'd ignore blood tests as there is no way they can compare. Suppressed TSH is permitted with someone who has had thyroid cancer and they don't come to harm. When taking NDT before the insistence that levo alone must be taken, we were given doses of NDT without blood tests and increased dose gradually until well.

This TSH fiasco is keeping millions unwell.

The following is how to help a patient recover:-

web.archive.org/web/2010103...

[Hidden in reply to shaws]

So true...! I have also wondered why a suppressed TSH is not considered dangerous in thyroid cancer patients but in Hashimoto's patients...? Thanks for the link!

[Clutter in reply to Hidden]

Anna69,

It's a question of balancing harms. Suppressing TSH to avoid recurrence of thyCa is seen as a lesser harm than developing AF and/or osteporosis. There seems to be a move towards less suppression which suggests the balance is changing.

[Hidden in reply to Clutter]

Meaning TSH suppression can have negative long-terms side effects...? I had no intention to suppress mine; it's just that when I feel truly well, which I only seem to do on NDT, with no hypo- or hyper symptoms, my TSH ends up below 0.01...even if both my free Ts are well in range.

[Clutter in reply to Hidden]

Anna69,

Well yes, that's why there is so much fuss about suppressed TSH. My decision is to take the minimum doses of thyroid replacement I need to feel well now. I have to accept that suppression may compromise my health in the future but I also know that euthyroid people can suffer AF and osteoporosis so I'm not worrying about it unduly.

[Singoutloud]

I had a similar conversation with mine a few weeks ago. Had to have a blood test to get my b12 injection. Knew my TSH would be suppressed due to NDT/T3 so lots of frantic calls & letters from surgery to make an appointment to see gp. Finally gave in as had to see him regarding another matter.

Was very matter of fact, said I know you wanted to see me about my suppressed TSH but I'm actually here for something completely different so will quickly explain that I'm no longer taking levo as it made me feel sluggish fat and sometimes went to bed feeling like I wouldn't wake up next morning. I I now take a combination t4/t3 tablet and although not perfect I'm getting there. My Ft4 is in range so I'm happy with that (they never test ft3). He didn't say a word about it. I suppose because the difference in me now compared to the dead woman walking, slumped over his desk a year ago is pretty obvious evidence that self medicating is working.

[Hidden in reply to Singoutloud]

Glad you hear you are doing OK, and hope that you will continue to improve on a combination of T3 and T4...I certainly did, but it takes time getting there. Best of luck to you!

[serenfach]

I just said in a confident voice when they were worried about my suppressed TSH "Oh good, the block and replace is working!"

They had no idea this was not true, but agreed with me and have left me alone ever since!

I did say to one endo "Oh, you obviously have not read the latest paper by Professor (made up name)!" He then said he had glanced at this fictitious paper! They give me bovine excrement and I fling it back!

[janveron1]

Suggest that they go on a course. They have to do these for Continuous Professional Development!!