[WWWI2]

#1060356

It was really easy when my numbers (tsh low, t4 and t3 high) and my antibodies were going nuts, to know I had Graves.

If my TSH, T4 and T3 are good but my TSI and/or TRaB numbers are bad and I’m symptomatic does that mean my Graves is active? And if so why are my TSH, T4 and T3 normal?

What determines whether the thyroid goes? TSH/T4/T3? or Antibodies?

I’m so confused

WWWI

[Raspberry]

#1182143

Okay I still feel a little hyper so I’ll give it a shot

Quote:

If my TSH, T4 and T3 are good but my TSI and/or TRaB numbers are bad and I’m symptomatic does that mean my Graves is active?

Yes

Quote:

And if so why are my TSH, T4 and T3 normal?

There is often a delay in the impact of the antibodies. Also there are three types of Graves’ antibodies: blocking, neutral and stimulating. It is the stimulating antibodies that act like TSH and push the thyroid to overproduce. But the other two types of antibodies can also be active and counteract/balance the stimulating ones. In that case your thyroid can still produce at normal levels but you might have other symptoms that are purely antibody related like eye problems. Here we get into speculation – but some believe the antibodies impact more than just the thyroid, eyes, and shins…like the brain. Here’s study with a handy terrifying table showing all the areas in the body the TSHR (TSH receptor) has been found. TSH Receptor reveals itself

Quote:

What determines whether the thyroid goes? TSH/T4/T3? or Antibodies?

Antibodies – the stimulating type. The TRab test will give a value for all Graves’ antibodies but the TSI test will measure the level of thyroid stimulation occurring. I’d love to get a TRab test, but I only have access to TSI but it is the most valuable one to tell you the level of excess thyroid stimulation.

Quote:

I’m so confused

It IS confusing! And even with all the obsessive reading I’ve done on this condition I still feel like there’s a piece missing that I haven’t found or that isn’t there.

[Raspberry]

#1182145

Oh and once I stop posting or begin to post only one or two sentences at a time you’ll know I’ve gone hypo again.

[Raspberry]

#1182146

Holy crap check this out….this is the study they used to back up TSH receptors in the brain in the first link I gave Study I won’t claim to understand every word of it but enough of it to really wish I’d already seen the psych to get some Xanax. Basically rats most definitely have TSH receptors all throughout very important parts of their brains, and likely so do we humans. Goodnight everybody.

[WWWI2]

#1182147

Raspberry – You are tremendous! Thank you. I’m still working through all of this but you have really helped. Thank you Thank you Thank you!

WWWI

[Kimberly]

#1182148

Hello – As Raspberry noted, Graves’ antibodies can potentially block thyroid hormone production, rather than the more usual course of revving up production. The challenge, though, is that there is not a good treatment available to specifically target these antibodies. There was an old study done in Japan in the early 1990s with block & replace therapy that had great success in bringing antibodies down and bringing about remission. However, the results have not been replicated in any other studies, to my knowledge. Part of the problem is that with the high doses of anti-thyroid drugs required to completely shut down thyroid hormone production, the risk of side effects is much higher – so people with side effects (particularly severe ones) have dropped out of subsequent studies.

[WWWI2]

#1182149

Kimberly

Thanks for this response. I’m familiar with block and replace as that’s what doctor #2 put me on and from which Doctor #3 took me off lol. I know when I was on that protocol i really felt unwell. The doctor would tell me that my numbers were good and because I was on both t4 and subsequently t3, he could tweek things very finely. I think you point is a valid one. While they are able to fully control the thyroid with B& R, the side effects from the meds, for me outweighed the benefit.

I also read the Japanese studies and from what I remember is that there was a very, very specific protocol that they followed in Japan that was multiyear. And it seemed to say that because the protocol was not followed to the letter outside of Japan the studies couldn’t be replicated.

At least I think I’m beginning to get my head around this in a very real world sense.

Thanks again for your response

WWWI

[Raspberry]

#1182150

Glad I could help WWWI2! Kimberly, do they ever talk about block and replace at the conferences? I wonder if there will ever be a revival? My first endo wouldn’t hear of it, my second endo acted like she’d have to refer me to someone else if I wanted it.

WWWI2, last night I was under the influence of thyroid hormones and caffeine, but today with a clearer head I realize I forgot to ask the obvious! Are you sure your thyroid hormone levels are in the best spot in the range for you? I literally feel like a different person if my FT4 is 1.0 versus if it is 1.2 while the range is a broad .8-1.8. Perhaps you could feel better with some thyroid level adjustment? I mean yeah TSH antibodies could be attacking your brain (and mine) but thyroid levels are really all we can control well

[WWWI2]

#1182151

Raspberry

That’s a good question. But I have no idea what level I feel good at. When they first put me on Meth they sent me deep into hypo territory (doc 1). Doc #2 did the block and replace and said my numbers were “optimal” but I never felt well. Don’t know if it was all the medication or if it wasn’t my “optimal” level. Doc #3 dropped all meds last summer and I think for a very brief time I felt ok but that could be just being off all the meds, but I’ve spent most of that time with my TSH under 1 (.1.2 then 7 then .8 and now .53) and I’ve felt hyper for most of that. I might have been ok when it was 1.2 but I don’t think that lasted very long.

What I can say is that with the 2.5 meth I started a week or so ago, things are calming down. So I think a lot of what has been going on is that for me the levels I was at made me somewhat hyper

Nothing like hyper charged with coffee

WWWI

[Kimberly]

#1182152

@Raspberry – I have not heard any docs at our conferences (at least since 2008, when I started attending) recommend full block & replace. The biggest concern is the increased risk for side effects with the larger doses of anti-thyroid drugs.

However, some docs have discussed the option of adding a small amount of replacement hormone to anti-thyroid drugs in patients (particularly children) who are having a hard time finding the “sweet spot” dose of ATDs that keeps them out of hypo.

[Author]

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