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in reply to: stress question #1182556

Hi Christy, I relate too. I find that stress just affects me much more than it used to. And enough stress, especially sustained stress does move up my thyroid levels and push down my TSH so far not enough to be declared hyper again but definitely in subclinical territory. As for how long…..last time I was in a really good place it took two weeks of intense stress to bring back the hyper feelings (and the labs showed it later) and it takes many weeks of low stress for things to calm down. Of course your doc can always adjust your dosages to compensate – one reason I still get labs every six weeks!

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in reply to: sore hair? #1182525

Hi Kimberly, of course warm weather is here and I want to put my hair up! Weirdly my hair has actually been better since I started this thread – posting to gdatf cured me??

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in reply to: Candidate for T3/T4 med combination? #1182533

Conniepye, much sympathies – I experience Graves very similarly. To me the anxiety can’t take another thing feeling tends to go with being a little on the hyper side. They hypo side also feels like I can’t take another thing either, but in kind of a more slug-like way. Sorry to hear about your four hard years, stress and stabilizing don’t seem to go together. I hope your doc can help you feel better soon.

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in reply to: Candidate for T3/T4 med combination? #1182530

Hi again Conniepye, I’m on the methimazole side of the fence but can relate very much. My mental symptoms seem way more than they should be given that my labs really are good. Maybe it’s all connected to the hurting hair. I also have disjointed speech unless I really focus, and people get impatient even angry which stresses me further. I don’t even try to wing it at the doctor anymore. I type out every issue and question in advance, print it and hand it to them. Helps a lot.

Unless you regularly get your FT4 and FT3 tested with your TSH you won’t really know if there’s a need for T3 supplementation. I have read many times about people doing better on Synthroid instead of levo, if I ever have a TT I’m going synthroid for sure. Wishing you luck!

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in reply to: sore hair? #1182523

Thanks Conniepye but sorry you are having this too. I like that description – it’s like my hair follicles have a hangover. When it first started I was convinced I must have hit my head and had bruised my scalp somehow but forgot cause dontcha know Graves affects your memory. LOL It is indeed a g-d disease. Have you noticed whether the hair soreness correlates to your labs at all, running a little high or a little low?

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in reply to: sore hair? #1182521

Thanks for the sympathy Barbra! It is a weird thing. It’s most noticeable when I first brush out my hair after I’ve gotten up in the morning as it’s been flattened against my head in the same position all night. I wouldn’t call it painful thank goodness just kind of achy – been going on for about a month. Maybe a year ago I read a post on a Graves board about someone saying their “hair hurt” but I don’t know where to find it now. I’ve been close to subclinical hyper for a while now and have had some significant hair thinning so I suspect it’s all connected. Will talk to endo about it all soon.

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in reply to: Still chasing Goldilocks dose of ATD #1182493

Hi Flora, there is a temporary rise in hyper symptoms as they thyroid levels go up even if they are going up a tiny bit and need to go up. It seems the movement of the hormones themselves does this – likewise you’ll get hypo symptoms as your levels move downward. For me the temporary effects usually last a week at the most two weeks. So I try not to judge the success of any methimazole dosage change till at least that long. I’ve heard that synthroid dosage changes can take even a bit longer to stabilize. But if you still have symptoms past that or the symptoms feel severe definitely talk to the doc!

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in reply to: Normal, finally! #1182449

I am so glad for you! You helped brighten my day with proof that things can get better.

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in reply to: Meds interfering with Levothyroxine #1182411

Hi Sue, congrats on the colitis remission, that is wonderful! I hope the thyroid meds situation can be sorted out quickly. I’m always reading about foods interfering with levo absorption, good to know steroids can too.

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in reply to: Communication with MD #1182419

Hi Scanders, I’ve had the experiene like you all to often of finding my doctors’ feet made of clay. It’s really scary when dealing with a serious condition. I’ve compromised more or less with educating myself constantly and questioning them on things that matter. If it really angers them and compromise can’t be reached – only happened for one doc – I find another doc. I feel for you with the eye doc situation because if I ever get severe TED there’s only one expert surgeon in my area and I’ve seen him and he’s ummmm not pleasant – he pushed on my eyes too I have no idea why. I was so shocked by this at the time I didn’t even ask him. I hope not to need to see him again! Still medically he seemed to know his stuff.

In your case I’d suggest quietly investigate if there is anyone else you can see and just do a second opinion on the side. Maybe you’ll like them better, maybe you won’t. At least you’ll feel like you are making the best choice available to you.

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in reply to: Never the same since RAI #1182366

I am so sorry you’ve been through so much difficulty since the RAI. I don’t know if I have any advice that would help but I’ll throw a few thoughts out there. You said that of all the doctors you’ve seen none of them would explore the issue past 15 minutes. That tells me that even though you’ve seen so many, you haven’t even seen one doctor yet that’s taken a real investigative approach. Maybe it would be worthwhile to try to track down a different type of doctor – there are organizations for holistic and integrative medicine that list doctor members. Osteopaths are supposed to sometimes have a different take than md’s. If you are limited by the town you live in it might even be worth it to travel to see someone even though I know that would be difficult working with little energy. I wish you all the best.

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in reply to: Abilify #1182340

Hi Teri, someone gave me the hard sell for Abilify not so long ago! Turns out it is a major “add on” drug to antidepressants these days. The trend is now to add it in a low dose to an antidepressant you are already taking. Nevermind that it’s an antipsychotic. In my research on it I read some really wonderful things and awful things about this use of it. I guess it’s up to you if you feel the Effexor isn’t enough.

I’m torn myself because I’ve been having a hard time but am resisting getting on a psych drug. I feel like I have very real and rational reactions to my circumstances and I’m unsure whether taking something to make that go away is right for me. Anyway, talking about you here….yes it sucks to have someone act like you just need a pill rather than them helping you with your actual problems. Even if the pill might help. Are you on SSD for Graves?

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in reply to: Can bloodshot eyes be about TED? #1181985

Just an update and needing to vent tonight. So the chemosis is still going on, maybe slightly worse than back in January. The only specialist I have access to who knows anything about TED decided to take himself a big long vacation so I still can’t see him for weeks. Everybody else sees it and just says “dry eye”…I know it’s not dry eye. I’m just so damn depressed about Graves. It’s been two years since diagnosis and I thought I’d be in remission by now or at the very least would not still be having the eye symptoms and dancing around with the methimazole dosing. I wonder if I should have taken the original suggestion of my endo to have surgery in the beginning, would I be happy and moved past this now? I know that it’s possible for it to be way worse than it is, but I also know plenty of people take one of the options and move on with life. Why can’t I? I actually think my endo is doing a good job and you guys know I’m a tough critic of the docs – I really don’t think I’d improve my situation by switching. My eyes are just burning hot – I’m so sick of this. Sorry for the whining, I’ll be ready to man up again tomorrow.

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in reply to: How to find a good doctor (not a newbie, on doctor #3) #1061058

Hi again WWWI2! I’ve fought with this issue too and can’t say I beat it but here’s a few ideas. They may let you ask one specific question about how the doctor practices before you make the appointment. Sometimes they will tolerate this and let you talk to the doctor’s nurse. The test question I use is do they prescribe T3 or Armour for patients on replacement. If they refuse to do that they are likely old school. I’ve found asking specific questions on how they prescribe methimazole or how they judge dosing to not be simple enough to get a straight answer. There’s also internet doctor reviews which are better than nothing but can be misleading if the doc is charismatic.

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in reply to: Pain,part of Graves? #1182265

Awesome advice from Shirley. Connie I’m sorry you are suffering too – thyroid issues if not properly treated can affect your entire body/mind. I’ll echo Shirley in that it is very important that you learn more about your thyroid labs and how to interpret them so you can be more active in your care. This is more important for Graves than for many other health conditions. There are some great books out there on thyroid disease for the public and all kinds of educational links at the top section of this forum.

To me the key is that even if you are in the normal range for TSH every person still has a “sweet spot” of where they feel best within that range. If you start keeping copies of thyroid labs and noting how you feel at the time as well as having a doctor do more frequent labs you may be able to find that better spot. Also getting another opinion is a good thing too!

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