[catstuart7]

in reply to: Saw New Endo–Love her!! #1177212

Congratulations!!!

[catstuart7]

in reply to: psych symptoms #1177111

HUGS to you guys! We will get through this some way some how.

[catstuart7]

in reply to: psych symptoms #1177105

Much sympathies jaqeinquotion, it is a tough thing. Over and over I have to check myself if I begin to have angry or fearful thoughts to see how do I feel in my body – often I’ll discover the feeling is physical and it is driving my thoughts. Of course it’s a lot easier to do that if I’m home alone and start feeling anxious for no reason, when it happens in real time interactions it is harder to monitor. The thoughts and emotions do feel real and valid….but on later reflection it’s like a trick my body played on my brain. I’m doing a bit better since my first post on this but still being cautious. I hope the psychiatrist is helpful and comes up with some good plans of action.

[catstuart7]

in reply to: Graves and no insurance #1177203

Hi Bellagon, I know it’s more money, but I’d encourage you before committing to RAI or surgery to get a second endocrinologist opinion. There are radically different views among them on how methimazole should be dosed based on the lab results. You might find another endo who might be able to make the methimazole work out for you after all and that by far would be the most affordable option.

The source of the controversy (which may or may not apply to you) is that some doctors do not reduce the methimazole as long as the TSH is still suppressed, but Graves’ can cause a false suppression of this value even though your actual thyroid hormones T4 and T3 are well within normal limits. So if your TSH is still low, but your FT4 and FT3 and within the normal range or even low please look at all your options. Wishing you well!

[catstuart7]

in reply to: psych symptoms #1177102

Thanks Kimberly! I’m feeling a bit better today. It’s weird it seems like my natural stress recovery systems are damaged. If I can go long enough without a new big stress, I’m relatively “normal” but once something happens it’s like a bell that won’t stop ringing. I’ve heard so many stories of people getting gobbled up by the mental health system and put on drugs and given diagnoses when in the end it was all just thyroid issues so I sure don’t want that. Will try to give it a bit more time.

[catstuart7]

in reply to: psych symptoms #1177100

Thanks Shirley, yep there are lots of stressful things happening in my life coming from every direction. I know part of the problem is how I am reacting to these things, but there are actually lots of objective real life things to react to also. I’ll think about doing the labs early if things keep on like this – my endo usually insists on a minimum of three weeks so it might be uphill to convince her.

Thanks Karen, oh yes standing in line is horrible! But then I always had a problem with that actually… It’s more than I used to be able to bite my tongue and now sometimes I just can’t and over small potatoes stuff too. My actual behavior might not look strange to someone who doesn’t know me, but I know I’m behaving out of character.

[catstuart7]

in reply to: Stress and Graves’ #1177087

Yes, yes, yes.

[catstuart7]

in reply to: OD might be cancelled…hot phase is back #1177071

I’m sorry too – TED should be like double jeopardy, one shouldn’t have to go through it more than once! Or even once for that matter. I have heard that being hypo can aggravate TED and depression – have you had thyroid levels run recently to make sure you aren’t around the bottom of the range?

I take fish oil sometimes, Nordic Naturals and felt good about the info on their website that there was a very low max amount of iodine in the oil (not more than 2.0mcg/g) – maybe you could call the manufacturer of your fish oil to be sure?

[catstuart7]

in reply to: Levels within normal range, but I’m not #1177049

WWWI2 wrote:

Cat – That brings up a question. If there is a problem feeling well in normal levels pre TT or RAI, how does one have confidence they can get them to a “good” place post? I do understand why getting it over could be appealing but I too am hoping to be in that 10-20 %. What fun this all is lol Sending you good thoughts on feeling well soon

WWWI

Thanks for the thoughts I hope you feel better soon too! Your question is a big part of why I’ve held back from a permanent solution. If you want to really make your head spin do some googling on Reverse T3 and T3 conversion problems. It seems like some people do fine on T4-only replacement hormone and that’s what most doctors do, but there is a subset that doesn’t. Sometimes they really struggle. And how do we know which group we’d fall into with no thyroid? There’s no way to know ahead of time! And even if you find the right doc, at any time they could move away or retire and you start over. There are advances in Europe like time-release T3 supplements that are very hard to get here. Sorry I’m really depressed today.

[catstuart7]

in reply to: Levels within normal range, but I’m not #1177047

I worry about the same thing – I got hypo and am still in the lower part of the normal range and I have felt worse from that than I ever did being hyper. People tell me that if I can get my FT4 and FT3 higher that it will be so much better, but it’s just such a slow process of months of making changes, doing labs, making more changes. I begin to see why for many the option of just getting it out surgery or RAI is appealing. Still I don’t want to give up….but need to feel better soon! I hope you do too!

[catstuart7]

in reply to: I’m back and feeling better #1176959

Just wanted to add – my post above is about the general issue of using TSH for Graves, Amy since your TSH is already way up at 4.6 the false suppression issue doesn’t apply to you. I hope your doc is lowering your PTU!

[catstuart7]

in reply to: I’m back and feeling better #1176958

Yep sounds like he puts the TSH first, which is what most endocrinologists do. There is recent research (in the last decade) which shows evidence for TSH receptors in the pituitary itself. This means that the Graves’ antibodies are not only sending a false overstimulating signal to the thyroid but also a misleading signal to the pituitary about how much thyroid hormone is in the blood. This can cause the pituitary to then send out less TSH than it otherwise would leading it to be falsely lowered. All the while your actual hormone levels, measured as FT4/FT3, can get too low and cause you hypo symptoms. Here’s a link to one relevant study Long-term TSH suppression . Especially check out the comments section at the end.

This pov is completely rejected by many endocrinolgists who were trained before the new research came out. That includes my own endocrinologist right now – fortunately for me my TSH is no longer suppressed so we are able to agree on dosing decisions.

If you want to see an example of long-term TSH suppression not in sync with thyroid hormone levels take a look at Harpy’s thread where she lists her partner’s lab values over a course of years.

[catstuart7]

in reply to: I’m back and feeling better #1176955

Hi Amy, welcome back! I’m glad you are feeling better – sounds like you are in take no prisoners mode. Sometimes we have to be to advocate for ourselves. I’ve found ATD reduction to be a tricky and treacherous business. During the first six months after my diagnosis every time the endo tried to reduce my dose by 25% even though it was completely indicated by my FT4, I had a big rebound reaction of hyper symptoms. Now though the rebound is smaller and shorter-lived. I suspect that the antibodies are involved in this somehow. Anyway, I hope you get one of these docs to go with you in the right direction.

[catstuart7]

in reply to: How do you cope with being on the knife edge? #1176946

JClark, that sounds really rough – please contact your endocrinologist and insist on labs and some sort of help. You could still be too hyper and need ATD’s or becoming hypo and starting to need replacement. Either way you shouldn’t have to suffer just because you are “young and healthy” as your endo said. You might find reading AZGravesGuy’s thread helpful – if you use the search function should find it, it is very long and is his chronicle of RAI and post-RAI experiences.

[catstuart7]

in reply to: Are We Contagious freaks? #1176930

Great point Shirley – I didn’t have a clue about Graves’ until I got it and did countless hours of research.

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