Preparation for endo this week: Morning all I... - Thyroid UK

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Preparation for endo this week

salshep profile image
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Morning all

I have my long awaited endo appointment on Thursday morning and am just pulling together all my prints of various results etc so that I go in armed :-)

Last in depth bloods were my Blue Horizon ones in July and after posting the results here for advice, got an increase of levo to take me to 75mg. In addition I take 12.75mg of T3.

Still not quirtete there but certainly feeling better than i have in years. I was all set to get more BH tests with a view to slightly increasing either levo or T3, when I got the call for the endo appointment out of the blue this week so no time to get these done now.

Just wondering if someone can advise on a couple of points please?

Should I tell the endo about the T3 that I'm taking.......surely the way I'm feeling is evidence that its working for me?

Also, I have the Pulse article and am a little confused. Under point 6, in the second to last paragraph it says "While taking both hormones it is important that serum TSH is normal and not suppressed". Why is this? I've read lots on the forum about people only feeling well when their TSH is below 1 or even suppressed.

I had bloods taken a couple of weeks ago ready for my coeliac review and they did actually test just TSH which came back at 0.49 (0.35 - 5). As this isn't supressed, I'm presuming it's not a problem?

Just as an aside, in 12 years of being first hyper and now hypo, I had never had antibodies checked (until my BH test) but going through my records, I've found a letter from the endo to my GP requesting her to test these in my next blood draw. The date of that letter......Feb 18 2005.......my initial diagnosis appointment. Unbelievable, who nows had this been tested back then my subsequent years of suffering and beibg diagnosed could have ben avoided.

Sal-shep :-)

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Clutter profile image
Clutter

SalShep,

I think you're wasting your own and endo's time if you aren't candid about self medicating T3.

I think Dr.Toft lost the gist somewhere in the article. Earlier he says that suppressed TSH is fine as long as FT3 remains within range.

TSH 0.49 is not suppressed as you say. Did your endo not request FT4 and FT3 in addition?

I don't think that having antibodies tested in 2005 would have prevented suffering. There is no treatment for autoimmune thyroid disease (Hashimoto's) and NHS doesn't usually commence treatment for hypothyroidism until TSH is over range or FT4 below range.

salshep profile image
salshep in reply to Clutter

Hi Clutter

That was kind of how I was thinking, they need the full facts to be able to help.

The test which gave the 0.49 TSH was requested by the gastroenterologist for my coeliac review not the endo. I would imagine the endo will want to do bloods when I go on Thursday before agreeing any dose changes. Luckily I'm first appointment of the day so I can do the usual fast and take meds after.

Sorry my typing went a bit screwy on the last post. By the antibodies being tested back in 2005, I meant being diagnosed coeliac could have perhaps been avoided? If I had gone gluten free back then to help the hashis, the coeliac disease may not have manifested itself. But then who knows which came first the hashis or the coeliac.

Thanks as always for replying :-)

Sal-shep

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