2nd visit to endo, left gobsmacked!

[markg73]

Well, I've had it! And that's after 2nd visit, I will not be back either.

This endo was not the same as last, but I guess they are the same really.

Basically, levo is doing nothing for me which I explained, this left her puzzled. Told her I tried up to 125mcg and this gave me shakes and quite anxious . She banged on that I was well within my levels and concluded that I had a " unknown medical condition". Really ??? I've never so rubbish in life!

She said that T3 would make very ill because I can't even handle 125mcg of levo, she also discounted vital Vit test, and said my cortisol level of 290 was pretty good for early afternoon.

She also seemed pleased that there was nothing more she could and asked if had been on anti -depressants. I replied that I had been down that road and I'm now gladly of the things.

Is she right about T3?

She made me feel angry, confused, I felt stupid and embarrassed.

My TSH is suppressed with FT4 at around 18. But I still feel crap!

Thanks

[sootysgirl]

Have you read Izabella Wentz's book "the root cause"? It's not just about hashimotos but all thyroid disorders and adrenal etc gives all sorts of tips on supplementation and diet etc... Worth a look... I'm also being referred to a second endo after the first nearly ended up with a mouthful from me lol just as well my GP is a good one x

[rosetrees]

Mark - I think you have the latest, mystery disease - SE. As in "it's not your thyroid, it must be Something Else".

You're better off without those endos. First, get your FT4 and FT3 measured along with thyroid antibodies. Then get Vit B12, Vit D, iron, folate and ferritin measured along with kidney function.

Then order the saliva cortisol test from Genova UK thyroiduk.org.uk/tuk/testin...

Something is going on. It's the endo's job to find out what, but clearly they aren't up to the job. In my experience most doctors aren't.

[Totoro]

There's no scientific reason why T3 would make you very ill because you couldn't handle 125mcg of T4. Absolutely none.

Did she test your T3? If she hasn't tested it she doesn't know if you are properly converting the T4 to T3.

It sounds like 125mcg is too much T4 for you but you might respond well on T3 (or might not, but it's worth trying), but likely couldn't tolerate more than an equivalent dose to 125mcg T4. Some doctors/endos use 3:1 when changing T4 to T3 and some use 4:1 or 5:1. So your top dose of T3 may be 40mcg to 25mcg T3.

I would advise getting your T3 tested (at the same time as your TSH and T4) and perhaps seeing one of the endos on ThyroidUK's list of friendly doctors if you can. Message an admin for the list.

Don't give up. I was on 200mcg of T4 and was still very ill. After much fighting I eventually got to try T3 and it made an immediate difference. I'm now on T3 only and in much, much better health. T3 might not work for you but it's worth trying. You are not stupid and shouldn't feel embarrassed. But yes, feel angry at the endo who is not telling you the truth and is fobbing you off with "unknown medical condition" and not telling you the truth about T3 or letting you try it. If she or her loved ones were in your position she'd be trying everything she could to help but you basically got told you had some random unknown medical condition... then got offered anti depressants!

Keep trying, there is light at the end of the tunnel.... and it's not a train coming

Best of Luck,

Totoro

[mickstability in reply to Totoro]

If Totoro hadn't put it so succinctly, I would have said exactly the same thing. I too am now well on T3 after years of being kept unwell by 'T3 blind' endos. It takes a while, and you'll still feel lousy at times, but persevere and you'll get there!

[Marz]

T4 you are taking is a storage hormone and is inactive. WHEN it converts into the Active hormone T3 then you begin to feel well. T3 is needed in every cell of the body. If the T4 does not convert well then it just remains hanging around and making you feel poorly - possibly rT3.

Do you have Hashimotos ? Often people who suffer have more difficulty in converting T4 into T3 - I'm one of them and now T3 only.

Having the vits and minerals tested that rosetrees mentioned is so good. When those levels are high in their ranges - then you may be able to convert the T4 into T3 and begin to feel better.....

Do you know your levels of Iron - B12 etc ?

[Hidden]

Hi Mark, I found T4 didn't solve everything. I'm much better with the addition of a very small amount of T3 - I wrote about this in more detail on my last post. It's my opinion that in the UK official guidelines are there to protect budgets so endos are programmed to relaying the 'sameold'. I did my research and made my own decisions about my health and since it was a choice of muscle pain/sleepless nights or wellness, I chose the latter.

[Glynisrose]

No she is not right about T3, it is the essential hormone to get in your system! Levo is T4 alone and if you do not convert T4 to T3 efficiently then you will feel ill!! All I can say is find some stuff on the internet, print it out and give it to her to read. If she says she hasn't the time etc. then remind her its part of her job...

[faith63]

If you have a high in range ft4 and still having hypo symptoms and a mix of hyper ones..it is highly likely that you are not converting the Levo into the t3 you need. Doc's don't pick up on this or think it exists. I would not waste my time and get the private labs done and get your own meds.

[markg73]

Thanks for the support and helpful comments.

My own personal journey for recovery starts today..

[blackqueen65]

I had the same problem on 125mcg Levo and initially when the Endo put me on 10mcg of T3 with 50mcg Levo I felt a lot better but it didn't last. I then upped the T3 to 20mcg and felt worse. Since then no matter what combination, even T3 alone hasn't helped, so she could be right in that if you have an underlying disorder of some kind or a lack of certain vitamins or iron, thyroid meds in general can make you feel worse, but she should be testing all those things.

I have low cortisol but apparently they think it's normal. It says in the Levo leaflet it will make you worse if you have adrenal insufficiency but they don't recognise just low cortisol, it has to be full blown Addison's before they seem interested. I'm currently back to the GP to get more testing so if I find out anything that might be useful I will post it on here.

[markg73 in reply to blackqueen65]

Hi Shaz49,

If you do find anything back I would certainly be interested.

I have a Synacthen test in two weeks at the hospital to check cortisol production or something like that, next week I'm booked in for a B12 and folate test, which I'm paying for out my own pocket.

I started on around 6mcg of Tiromel T3 today and I'll see how small doses goes for me.

I'm not sure how it will work out.....

Thanks