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in reply to: Starting PTU today or tomorrow #1175831
Hi Amy, I hope the PTU works out for you – I was able to tolerate it okay. They say the ratio of methimazole to PTU is 1:10, so were you on 10mg of methimazole before? Because of PTU’s short half-life (2-3 hours) it is best to take it in divided doses 3 times a day I’m so sorry about your mom and the difficult family times coming at the holidays now – I hope your visit with your friend brings comfort.
in reply to: Well, here goes! #1173553Congrats AZGravesguy, so glad to hear you are feeling well and goodbye clown pants!
in reply to: Synthroid Recall #1175803mariaboo wrote:Why would I want to take anything at this point? If you have your thyroid removed after RAI, do you still have to take meds?YES! You need thyroid hormone to live. You won’t die right away if you don’t take it but in time you would become increasingly ill. Do an internet search on people who’ve tried going without – their stories will convince you. I don’t know anything about this recall but hopefully your doc should.
in reply to: Tremors, what to do? #1175764Vanillasky I’m sorry things are going bad with you, and I hope you hear back from your doctor’s office soon! A TSH of .6 can mean a lot of things, you really need your FT4 and FT3 to complete the picture. For me, an important part of the picture is the direction the hormones are going – if they are going up even if the TSH isn’t fully suppressed yet I’ll have hyper symptoms – that happened to me recently. Sometimes though they are going up and producing transient hyper symptoms but actually need to be going up because you were hypo. So there’s tons of context to this stuff. But tremors does usually mean honest to goodness hyper is going on.
One thing that helps me keep a tight focus on what is happening is that I take my pulse and blood pressure at the same time every day and write it down. The trend is very useful to have. I also weigh once a week first thing in the morning to keep a watch on that too.
AZGravesguy, your post made me smile too – I think I may try some therapeutic swearing later! You’ve got such a positive energy toward all this – makes me want to do better.
in reply to: searching for eye mask #1175746Hi Gatorgirly, that’s a good idea but I’m daunted by the idea of trying to lift up my bed to get the board under it. Were you able to put the board there by yourself? I bought a bed wedge a few months ago but it was so hard to sleep on. I kept trying to slide further and further down!
in reply to: Graves’ and anxiety. husband making me sick? #1175710vanillasky wrote:** The garbage can I threw was plastic sorry to say..LOL! but nevertheless made a huge mess. 😆 He just stood there and looked at me. Asked me if I had “Graves’ Rage.” He’s lucky I don’t believe in guns.
Ha! I bet that made you angrier!
in reply to: searching for eye mask #1175744Shirley, dry eye zone! That is what I had remembered and forgotten, thanks!
Gatorgirly and Caro, thanks for the ideas too – I definitely want to do something. Any sign of the TED advancing makes me so nervous.
in reply to: Graves’ and anxiety. husband making me sick? #1175705(((((Vanillasky))))) you’ll be okay, this will smooth out soon. I haven’t had it happen as often lately, but I have had this reaction. For me walking out in nature and physical activity helps a lot, throwing things away, cleaning.
About your husband, it’s clear he just doesn’t get it that you need to avoid extra stress. Even if (God forbid) you had cancer odds are a couple months delay would not kill you. You do know you’ve got Graves, so that’s got to be the priority. I personally wouldn’t go more than six months delay on a check that is meant to be yearly though. Has you husband read the open letter to family and spouses of Graves patients that is often posted? How are your thyroid levels right now? I hope you feel better soon.
in reply to: brain recovery time? #1175572Sally, I’m glad it was helpful – it was a revelation for me when I found out about the mental/emotional side effects of Graves. It explained a lot and helped me forgive myself for some things.
Gatorgirly, definitely speaking trouble! Hopefully with all the activity you get talking to others maybe the effect will go away eventually?
in reply to: An Introduction #1175623Smtucker, welcome but sorry you have to join us. Absolutely methimazole should be divided into twice daily doses. It has a half-life of 4-6 hours, so if you take it once a day in the later half of the day you hardly have any effect and it can bounce you around. If you are ever on PTU, you’ll need to take that three times a day. I don’t get it why there is such inconsistency in the recommendation of the dosing. My original endo who proposed I take my entire PTU dose once a day was a bit put off when I wanted to divide it into three doses, but basically said it was my choice.
Also, have you have any antibody tests run? Specifically TSI or TRab? TSI is the definitive test for Graves. Has your doctor ruled out other causes of thyrotoxicosis other than Graves such as Hashitoxicosis or a “hot nodule”? Just a few things to check on if you still feel unconvinced about your Graves diagnosis.
Gee, I must be a bit hyper today….I’ve typing like a maniac.
@gatorgirl – I too am sorry to hear about your father. At least you’ve blazed the trail for him and he can benefit from all your experiences.
in reply to: * Graves’ Disease … are we in a loop? * #1175668Interesting article Caro! It gets a few ideas churning. If their conclusion is right hyperthyroidism itself increases the autoimmune reaction and euthyroidism reduces it, I wonder what hypothyroidism does? Over and over I’ve read (and experienced) that endos often make their patients hypothyroid by keeping them on a dose of anti-thyroid drug that is too high for too long. My guess is that it is probably easy to overshoot the mark too. Yet hypo is considered a lesser evil than hyper, but there’s an autoimmune process going on there too for some of us – I haven’t been tested and hope to be, but I’m fairly sure I also have Hashi’s antibodies. I noticed my TED symptoms flare when my thyroid levels fell to their lowest during my initial round on methimazole. I had actual pain behind the eyes and with certain eye movements. Before that while hyper, I never had pain but gradually got some protrusion of one eye which I hope will behave and go back in now. I am quite motivated to find the ideal euthryoid state!
So anyway, my layman’s proposal is that endo’s need to be more careful about not only ending the hyper state but also not creating the hypo state as autoimmunity is aggravated in either case.
in reply to: FT4 and FT3 question #1175533Hi Naisly, I still haven’t gotten enough focus (see my beleaguered brain post) to closely read the article but I’ve scanned it though and it looks VERY interesting. The parts about temperature, light, and diet are definitely affecting me I suspect. About your levels, yeah they are terrible! I hope you find some relief soon – I know how bad I’ve been feeling with supposedly “normal” levels so I can imagine you’ve been going through the wringer. It does look like you are gradually moving into the right direction though. Stay strong and I hope your headache gets better!
in reply to: brain recovery time? #1175569Sportnut2, I really feel for your daughter dealing with this in college. That’s a time when so many important things are decided and accomplished. It sounds like you are a wonderful advocate for her though and she is lucky to have you! If you have any links you think would be helpful to read about Graves and the brain feel free to share. I’ll share too what I discover along the way.
Maryl, it’s good to know you feel progress is continuual even if it is very gradual. I try to be patient, but I just feel so frustrated. And indeed a true friend is a blessing indeed.
AZGravesguy, I can relate so very much. So you drop things too? That was one of the key signs pre-diagnosis for me . I like your idea of meditation I really should try to get back to doing that – they say it is good for even regular brains.
I do wonder about the antibodies and the brain too like you all say. Some folks have the theory you should avoid anything that stimulates the immune system to help an auto-immune disease calm down. I just don’t know how to bring myself to give up wheat, sugar, dairy, and caffeine. Oh and stress. It feels like too much!
Thanks for letting me vent and all your support!
in reply to: Diet & Graves Disease #1175369I suspect my problems started with soy and stress. About a decade ago I decided to take my lactose intolerance seriously and switched to soy. In the years that followed I became slightly hypothyroid but this is by today’s reference ranges – back then the ranges went up higher so the doctors still said it was acceptable. So many years passed, and then many big stressors happened. My guess is if I hadn’t been hypo and hadn’t had the stress maybe I could have gone longer before Graves showed up, but no doubt I had a date with it eventually.
WWW12, in my experience so far the feeling of unwellness goes far longer than it should. In the beginning I believed it was because the docs weren’t doing their job but I now think it is more complicated than that – it actually is hard to find the right dosage for someone. I easily go hyper or hypo over very small dosage changes. Then there’s residual effects from being sick so long. There are success stories out there of people doing well on medication for years though like Kimberly here, so it is possible. You’ve only been at this for four months…it’s a long journey, I’m going on nine months and still don’t feel like I’m seeing the light of day but still trying.
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