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in reply to: Okay. What would you do? #1172206
I’ve been following along pretty closely, so I’ll share what I would do if I were you. Of course I’m not you so of course take what’s useful to you…
I would take nothing at all, continue to nurse the baby, keep getting regularly monitored. Then when/if the levels go up again it is entirely possible I will have already finished nursing the baby or have done so long enough for enough essential antibodies to be passed over to him. Try PTU with careful monitoring and continue nursing if still doing so. If PTU doesn’t work, then wean the baby if still nursing and get RAI while deliberately taking the risk that I will be untreated until dried up. But that worst case scenario assumes that the levels would rise very soon and PTU won’t be tolerable. If it were me I’d take the gamble that that won’t happen. But only you know if you’d take that gamble. I hope that helps!
in reply to: Just received call from endo…results #1172115Congratulations on the improvement, hope that cloud keeps lifting up and going away!
in reply to: Overwhelmed, frustrated & worried #1172165adenure wrote:The doctor I talked to while my endo. was out said the patchiness in my scan and an increasing TSH would be indicative of thyroiditis.Patchiness in the scan can also indicate nodules like mine – did you already have an ultrasound done?
in reply to: Overwhelmed, frustrated & worried #1172152Alexis, so what made them decide it was Graves for sure? I’d be really frustrated in your position too. My endo told me that thyroid surgery is “minor” if that helps any – there seems to be a range of opinions. What are the specific risks that they are telling you about surgery? One idea I had reading your post was that your endo probably has very little experience with patients having thyroid surgery for Graves given his strong preference for RAI (hence the labs in two weeks thing) maybe your surgeon could recommend another endo he works closely with for a second opinion?
in reply to: What is your (non-professional) opinion? #1172095Alexis, have you heard about how they can use iodine directly to cause your thyroid to shut down before surgery? That is one liver safe option that’s out there though I don’t know how common its usage is. Maybe that could buy you some time? I’m tired too…I hear ya.
ETA: Just read the other thread, looks like you already know about the iodine drops. Seems like the complicating factor is the breastfeeding for a lot of these decisions so it comes down to what feels right for you and the baby.
in reply to: What is your (non-professional) opinion? #1172093Why does surgery have to be so soon? Since you are normal right now maybe just let things ride for a bit?
in reply to: how long till brain is back? #1172003Bobbi, thanks for sharing your experience about the PTU – I have been wondering the very same thing. The fogging did increase when I started the PTU but then I wonder if it is because the hormones are dropping too. I’m definitely going to keep a watch on it.
Beach, definitely I’ll wait till I get a steady stretch of having the hormones at normal (if I’m lucky enough to get that) before making conclusions. I do overall like my endo though I suspect she’s going to balk when I bring up anything off the main track. It sounds like you had a roller coaster with the meds so it was hard to tell what was causing what. I hope things smooth out post-RAI fast for you.
Thanks Darcy – may we all heal!
in reply to: Seeking Support & Advice #1172074Hi PJ, sorry to hear you are in such a tough spot – I can relate very much. I too wish I could feel normal again and it seems so far away at this point. Have you read anything about add-back or block-and-replace therapy? I’m still learning but as I understand it methimazole is supposed to help suppress the antibodies at a high enough dose so the doc gives enough methimazole to make a person hypothyroid and replacement hormone simultaneously to keep them normal for a 2-4 years. It’s supposed to lead to higher remission rates. I’ll try to find the study if you are interested.
As for me I don’t know if I’ll do it or not because I already have side effects with the low dose of PTU I’m on already. Still it’s an option to kick around. Good luck – I hope you find the best option for you.
in reply to: weird eye sensations should I worry? #1172020Exactly Bobbi, I mean would it have killed the man to show one iota of empathy! I hate to think how he talks to his patients with severe TED. He doesn’t strike me as having hidden emotional depths. I’ve been told he is The Doctor to see in my region if I will ever need OD surgery so I guess I’ll have to get along with him.
Kells1, thanks for that list – I do have some of those symptoms for sure. I’m curious to try the cold pack because my eyes always feel hot and scratchy to some degree. And yes reassurance…that’s all I wanted. I wanted his perspective on things where I’m at, what to expect, something to help me calm down.
Beach, thanks much for your support. I’m glad your thyroid eye doctor has such a good reputation though he doesn’t sound too compassionate either. My doc basically said the same thing – that if it gets bad he’ll just do surgery no big deal. Uh, to YOU maybe. Good luck with your eye guy and the endo too, I know you were thinking about another endo? I too wish they all could be more compassionate but I guess they see people all day long with issues and it becomes routine to them.
in reply to: weird eye sensations should I worry? #1172013Alexis, sorry you are having this trouble too. I feel like a wimp getting freaked out about it given the serious trouble some on this board have, but each time I feel that weird little tweak behind my eye in a place I’ve never had a sensation before I just get filled with panic. I asked the ophth. specialist about how to deal with the fear of disfigurement and future surgeries and he wasn’t sympathetic at all and said I should just go see a therapist if I was freaking out about it so much. I’ve gotten much more help from the message boards seeing that life does go on even if the worst happens.
Bobbi/Kells, I use the drops too probably not often enough. I kind of gotten used to just being uncomfortable all the time probably not good for my eyes. Maybe I’ll go put some drops in now.
in reply to: weird eye sensations should I worry? #1172008Thanks Bobbi, I think my guy would definitely be watch and wait like you say. I almost got the feeling he didn’t even want me in his office when I first saw him – this guy does TED surgeries – but my endo referred me to him to get a baseline. Thanks for the hugs I’ve been freaking out a lot lately.
in reply to: how long till brain is back? #1171998Thanks Harpy, it’s good to know there’s some hope at the end of this tunnel. Still even a few months feels like an eternity!
Bobbi wrote:It pays to note that in these articles the cognitive issues are associated with HYPERTHYROIDISM, not Graves antibodies. Not when we are back to normal levels of hormone. I don’t know of studies that talk about this cognitive problem persisting once normal levels of hormone are reached and controlled.I really wonder about this too Bobbi. I hope and pray that once my thyroid hormone levels are normal that I can go back to normal functioning.
Good luck to you Tina! I just wrote a post about these same problems. Hats off to you for dealing with school and this at the same time – I know it must be a challenge.
Hugs Bri and welcome. It’s a scary rollercoaster of a ride isn’t it? I was diagnosed a couple months ago. I had a very similar onsest of symptoms like you did. The tremor was the scariest because I’d look it up and see it linked with all these neurological disorders like MS. Are you able to sleep now that your thyroid levels are down? I’m still in the process of getting mine down and deep sleep is hard to come by – more like fitful light sleep. Anyway, hang in there at least you’ve got a diagnosis now and the biggest risks are behind you.
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