Thyroid eye disease and why is t3 of 16.8 impressive?

[Hellbell824]

Hi everyone, second post in my thyroid journey..

Results 11/7/17

TSH 0.0

T4 37

T3 16.8

Have been taking 20mg for 3 weeks and to say I was worried about taking them, I actually feel better and have had few side effects.

Went to see the endo on Friday, lovely guy. Not patronising, was imformative and listened to what I had to say. Diagnosed me with graves, which I expected anyway but he also said he thinks I have thyroid eye disease, I've not looked (see what I did there) into that at all, just knew that it makes eyes a bit bulgy and uncomfortable. Which my eyes are. I didn't know that in rare cases it can cause blindness. He's reffered me to a eye consultant that specialised in TED, but until I see her has anyone else had this? Does it get better? What's the treatment? Is there anywhere I can find more info on the condition?

On a side note, I asked him to explain about t3. I've read lots about t4 & tsh but there's not really a lot about t3. He told me my t3 was impressive but not why and I didn't ask.. which I wish I did. He did tell me that the t3 (which he said, some people say is what works best for hypos to make them feel better) patent has recently changed hands an the price has gone up. The dose of t4 £20 the same dose of t3 has gone up to £2000!

[greygoose]

I don't understand, if you are hyper, why were you taking T3? That's for hypos.

Your doctor cannot diagnose you with Grave's, without doing antibody tests. He is just speculating. If you were hypo to begin with, and then 'went hyper' - which would appear to be the case with the limited information you give us, then you have Hashimoto's, not Grave's.

Your FT3 was obviously 'impressive' because it was high, but you don't give the ranges, so we don't know how high.

[Clutter in reply to greygoose]

GG,

Having TED confirms Graves. She is hyper and taking 20mg Carbimazole. Not sure why endo would be discussing T3 treatment with a hyper patient.

[greygoose in reply to Clutter]

The OP said she was taking T3. You don't take T3 when you're hyper. And, I have read that Hashi's can also cause TED.

[Clutter in reply to greygoose]

No, she didn't. She said she was taking 20mg. Didn't say 20mg what in post above but previous post said Carbimazole. If TED is diagnosed Graves antibodies are present. Some patients have Hashis and Graves in tandem.

[greygoose in reply to Clutter]

Oh yes! lol Optical illusion! I must need glasses or something. OK, forget I said anything. My bad.

[Clutter in reply to greygoose]

GG,

Didn't help that endo said FT3 16.8 was 'impressive' making it sound like it was a good thing, then the chat about T3 meds which is why I went back to check previous post.

[greygoose in reply to Clutter]

Yes, I read it before I was properly awake this morning. It all got mixed up in my head! That endo is easily impressed! lol

[Hellbell824 in reply to greygoose]

Hi GG sorry if I have confused you I'm not sure of the levels but think t3 should be below 7 and t4 below 20.

I do have antibodies but again not sure of the levels. It's all rather new to me and tbh the Eye disease was a shock hence me asking for advice

I have another blood test in 4 weeks and I will be sure to get all the levels and ranges when I get the results.

[greygoose in reply to Hellbell824]

More importantly, which antibodies were they?

[Clutter]

Hellbell824,

No idea why your endo would say FT3 16.8 is impressive which makes it sound desirable whereas it is actually very high and dangerous which is why you are prescribed 20mg Carbimazole to block production.

If you have TED then its almost a certainty you have Graves Disease. Type "TED" or "Thyroid Eye Disease" into the Search Thyroid UK box top right to find posts on TED. There are also posts on Graves and Thyroid Eye Disease under Topics to the left of your post.

He's exaggerated the cost of Liothyronine (T3) - 28 x 20mcg costs £258+. Price of 100 x 20mg Carbimazole has also rocketed recently from £22.94 to £165.42. Monoply suppliers are price gouging the NHS and its about time DoH did something about it.

[Hellbell824 in reply to Clutter]

Hi thanks for your reply Sorry if I confused you. I am hyper thyroid with graves and I'm not taking T3

The t3 conversation came about because I asked him what t3 does. I have read loads about t4 and tsh but haven't seen much info about the importance of t3. He told me about the costs but not about what it does an what it means if it's high

it really is disgusting what the suppliers are doing. I agree the DoH should act

[Angel_of_the_North in reply to Hellbell824]

T3 is the active thyroid hormone which runs your metabolism. If it is too high you'll get a fast heart rate, feel too hot, probably lose weight (although you could gain if your appetite increases) your cells will die off too fast and might not be replaced fast enough so you could get osteoporosis. It's like having your foot on the accelerator all the time.