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in reply to: Do you wonder if others have thyroid issues? #1182255

Flora, I guess most people around me just thought I was just being an anxious reactionary person. One time I had someone imply I was on drugs! Seems like really only the eye symptoms can be definitive on looking at someone and even that it’s hard to say unless it is severe. The rest of the symptoms could be caused by so many things. That’s great you are spreading awareness about it too.

Kimberly, I’ve never tried to contact a public person before. I’ll have to look at how to do it and then of course I’ll feel like a jerk if nothing is wrong with her other than an unsuccessful plastic surgery. Still I’ve been watching the show for three years and her eyes had the most retraction I’d seen this past week. And yeah, I don’t want to start any rumors about her so I won’t ever mention her name online. I know there are people in my real life I would never tell that I had Graves because I don’t think they’d handle it respectfully. Still it would be nice if more famous people who had Graves came out with it to help with public knowledge. Geeesh I’m wordy today….that’s all folks.

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in reply to: Hyper again 6 months after radiation ablation #1182211

Hi Joanne, sorry to hear you are still on a rocky road I hope things can get better soon. Here’s a few ideas to try out. Studies show that the Graves’ antibodies often stay high for years after the RAI treatment subsiding down to zero at about ten years. So your antibodies continuing to be high is not unexpected.

You might find it helpful to get the FT3 test done and like Kimberly said it’s good to always look at (or post) your lab results with the ranges. The Free T3 is supposed to be what describes how we feel the most. Total T3 can be thrown off by other factors in the blood and I’ve always read the FT3 is the better test to get. My own FT4 never went of range when I was hyper but the FT3 did. Good luck!

PS – And getting another opinion is always a good idea too, especially if you can get another doc not in the same practice

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in reply to: Hi all, back in touch #1182176

Wow you have been through it Deb! You are a true Graves Warrior indeed. At least now that your thyroid is out you know you’ll never have to have it out again…is that a comfort? Is the radiation you are recovering from for thyroid cancer or that treatment they do for the TED? I hope your recovery gets smoother from here on out!

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in reply to: Hi all, back in touch #1182173

The suspense is killing me! I hope things are going okay by you

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in reply to: Natural Alternative for Synthroid #1182171

Maybe you are thinking of Armour which is made from dessicated pig thyroid?

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in reply to: What’s actually important in Graves’? #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

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in reply to: What’s actually important in Graves’? #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.

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in reply to: What’s actually important in Graves’? #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.

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in reply to: What’s actually important in Graves’? #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

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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

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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.

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in reply to: antidepressants and Graves #1182132

Thanks Kimberly and AZGravesGuy! Good to know that there aren’t any known problems with antidepressants and Graves. AZGG – I still have hopes to get my meditation more regular, it does help when I can do it. Right now I’m raising my methimazole dosage so I’ll be a little bit less hyper soon so hopefully that will make the path clearer too.

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in reply to: Is anyone allergic to Tapazole / PTU? Now what! #1182140

Unfortunately if you can’t tolerate the two meds, your only other options are thyroidectomy or RAI. Still, be careful concluding the two meds don’t work or are causing the side effects – it is quite possible it is simply that you are on the wrong dosage or it is a result of your thyroid levels being in the wrong place. The main deal-breaker side effects for the meds are if your white blood cell count is plummeting or your have liver reactions which is why timely monitoring is so important. Definitely important to find an endo you feel good about before making major decisions.

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in reply to: antidepressants and Graves #1182130

Thanks Sue and a pm coming your way!

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in reply to: Graves’ rearing it’s ugly head again #1182068

Update for you WWWI2, so my TSH is creeping down 0.3 now and the other lab values creeped up a little bit (though still in range) so my endo is having me raise my methimazole a small amount. My frustration is this slide in the wrong direction is happening while everything else is constant in my life other than stress hence my new post about antidepressants. I’m thinking I may have to drug myself silly just to get some stability.

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in reply to: Aye caramba! #1182118

Good luck to you Sara, I’ll be rooting for you please update us as you feel up to it!

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in reply to: Normal? Subclinical? Confused #1182111

HI WWWI2, the bit you might be missing is that the purpose of the methimazole is to lower the actual thyroid hormones (FT4 and FT3) and TSH goes up as a by-product of that. A low TSH in and of itself technically is not able to do anything bad to you – it’s an indicator rather than an actor. Many people in their initial onset of Graves maintain a TSH of 0.01 for months and the endo calibrates the methimazole dose based only on the FT4/FT3 until the TSH “recovers”.

So in subclinical Graves’ it’s tricky because your FT values are the ones that are determining how you feel and are good (supposedly) yet your TSH is sending out a warning. I suspect that there’s a missing piece to this chain that isn’t fully understood yet. So if you take more methimazole you potentially drive the FT values too low and get hypo symptoms though you may succeed in eventually driving up the TSH.

And here ends the last of what I can say with any confidence….. I noticed on AZGravesGuy’s very first post he mentions having been subclinical hyper in the past. Maybe he might have something to share? Me I’m waiting on lab work right now so I’ll let you know what happens. My endo said that if my TSH hasn’t risen any she’s willing to let me raise the methimazole a tiny bit, but wants to retest me in 3 weeks to make sure I don’t go too low on the FT’s.

PS – Antibody tests (TSI or TRab) can be helpful to see how active the Graves’ is but some docs don’t like to order it because it doesn’t affect their treatment decisions. I like to have it about every six months just to have an idea of how close (or not…) I might be to remission.

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