[Kimberly]

#1176450

Veering a little off topic, but just a quick note on Missy Elliott…she released two new singles late last year (her first since being diagnosed), and she expects to come out with a new full-length album in 2013.

So although dealing with Graves’ does take a lot of time and patience, there *definitely* is light at the end of the tunnel!

[rae5]

#1176451

Hi Vanilla, I’m still doing the ‘HOT’ thing too. I close the door at work and turn aircon on full blast. I had the aircon on all through winter too and wore tshirts n shorts. And was still a sweaty mess! Heres hoping that intern went away and learnt a thing or two, and takes the next Graves patient seriously hey.

I too had a visit to the ER not very long ago. I fainted at work, they got a nurse to take my blood pressure which was very very high, my boss drove me straight to the ER(nice boss) Symptoms very much like yours but I didnt know anything about Graves then, and I had a really bad headache for 4 days straight and I never get headaches, and a light fever… They kept asking me if I was a drug user!! (I’m not), at least three times and in three different ways they asked me if I took drugs!! In the end they gave me intravenous something or other for the ‘migrane’ they said I had, nothing at all for the pulse which was rather fast..my blood pressure was very high too, and then they put me in a quiet room till my ‘migrane’ went away. I had no other migrane signs. So as soon as the intravenous stuff was finished I said I felt better and went home…took paracetamol for two more days till I finally went to see my doctor and he ran some tests..I was not better at all! Grrr…makes ya angry huh!

[rae5]

#1176452

Hi Shasta, thanks! and great to hear from you. If you still have a marriage, even one stretched as thin as it gets, there is still hope. Have you given your husband any reading material? Yes it is so hard to explain Graves! If you have already explained in detail, being a man (apologies to men!)I wonder how much he really took in or understood? I think it’s harder for men to understand than women just because they grow up in a society where men are supposed to be tough and not all emotional etc, stupid huh! I read somewhere to make a plan of action together for when the “graves rage’ takes hold, I thought it made sense, did you read that too? I know there is more to it than the rage though.
The eye thing really bothers me, I only have mild signs so far but I am trying to prepare for the change and I think it will hit my self esteem pretty hard. It sounds like yours are a bit more than mild, as if you dont have enough to deal with already huh.
Well done for finally telling your Family and Friends, it’s not that easy huh. Glad some had a positive reaction.
From your post, it sounds like you are a usually positive person and are trying to keep the positives. Thank you for reminding me! It’s all to easy to get into the poor me thing and go the other way..I try very hard not to do that so it’s nice to hear someone else trying as well.
Hope that made sense, brain is a bit slow this morning

[Robboford]

#1176453

Hi Rae5,
I have only now got internet and email access back after the Christmas/New Year break. I am also from oz (Nth Western Sydney) and would have made contact earlier if I could of. Welcome to this forum, they are all a great bunch. The information, support and understanding I have gained from here is awesome – absolutely priceless. They have kept me sane and have helped me with info and information that I hadn’t received from all the medical staff I have been involved with. A brief outline of my journey so far: (you will find heaps more of my posts if you search my username) I went to my GP in early September ’10 with swollen ankles. She immediately told me to go straight to Emergency at Hospital. Got admitted to Hospital and was diagnosed with Graves’ Disease and Heart Failure. Was in Hospital 2 weeks, was discharged and then took 3 months to recover enough to go back to work. Continued with meds, blood tests , endo visits etc. TSH didn’t register for approx 12 months and I am on a block and replace regime as my levels just could not be stabilized. I am currently waiting for surgery to have my Thyroid removed and have seen a Surgeon, but he will not perform surgery till the Cardiologist says all is OK. (I am still on Blood Thinners, Beta Blockers etc). Coupled with that I also have TED and my Opthalmologist has recommended Radiation so still deciding on course of action for that. I see Endo in 3 weeks, Opthalmologist in 2 weeks and Cardiologist in 4 weeks, so hopefully I will soon be on the next stage of this journey. I sympathise with your “feeling hot” issue, but believe me after going though winter and feeling constantly bone chillingly cold (no amount of layering clothes or sitting in front of fires/heaters etc would make the cold go away). At least in summer I can go for a swim or have a shower or sit in front of fan or air conditioning. So the better of the 2 evils I found was feeling hot all the time. I also am one of the “special” people to have pretibial myxedema (???spelling). This Graves’ journey has been a crap ride so far but one of the benefits has been becoming a part of this wonderful forum. Hang in there, and try and stay positive (it can be hard sometimes, I have the odd feeling down and fed up with it all day now and then – we all have them), but this wonderful forum is only a few clicks away. Also, if I can offer any advice or help please PM me.
Cheers, hugs and kisses
Debbie (A.K.A. Robboford)

[rae5]

#1176454

Hi Debbie,
Great to hear from you, thanks. I tried searching for your posts but it keeps coming up error.I did find a few and will try again another day. Gee you don’t do things by halves do you. I’m sorry to hear you have had such a long hard graves journey so far!! I too have found this forum an absolute saviour. It sounds like you have made some progress if you are at the stage where you are ‘on the list’. I have my fingers, toes and everything else crossed for you for good news in 4 weeks time! With TED, do you have a choice of surgery or radiation? or are you just deciding whether to have radiation at all?
I just saw my Endo this week. My results in December were T3 and T4 in range, TSH <0.01(0.5 -5.0) Which was all an absolutely surprisingly huge improvement, great news! I felt so lucky. The results from the tests a week ago are TSH 0.01 so yay! thats gone up slightly, but problem is the Free T4 is now 9 (11.0 - 21.0) and FreeT3 is 3.0 (3.1 - 6.0). So the way I see it is that now I am going low? He reduced my Carbimazol, from 3 doses a day total 45mg to two doses, total 25mg. Two days on and I am headachey(note - headachey is a word, right!) and twice now today have felt like I'm going to pass out and had to sit on the floor. Ho Hum, am hoping that stops sometime soon. My pulse has gone up too, (beta blockers why arent you working for me now, do your thing!!lol.)
I think I am only just beginning to realise this might take longer than I thought. I walked into the endo appointment start of this week and told him I’m over it, do RAI . He said he wants me to be more balanced before making any decisions about treatment, hmmm did he mean emotionally or levels, I now wonder… He gave me info on both RAI and Surgery. I only asked for the RAI cos I was sick of the waiting game already and knew surgery wasnt an option at that time..I think I might need to work on my patience levels a tad..Have regained my sense and am now continuing with making a choice based on logic now rather than emotion lol. If all else fails, I have my sense of humour and WILL be ok. Thanks for the offer of advice Debbie, I dont like being cold, so wouldnt like the bone chillingly cold you had to endure either!wouldnt somewhere inbetween be nice…

[Kimberly]

#1176455

@rae5 – It’s common to cut the dose of anti-thyroid drugs after the first few weeks to keep from going hypO. However, dialing in to the right dose that will keep your levels stable is something of a trial-and-error process. If you continue to feel poorly on your current dose, it would be worth calling your doc’s office to get an updated set of labs done and see if the dose needs to be tweaked again.

Take care!

[Robboford]

#1176456

Hi Rae5,
Patience is definitely a virtue on this journey. Before jumping into the radiation option, although surgery isn’t right for you at the moment research, research and decide what it is best for you. for the first 6 months of my journey I cruised along with whatever I was told, however now I am my own advocate. Stand up for your self and if you feel something isn’t right or you need more time to choose the right treatment plan for you, then tell the Doctors etc that you will let them know once you have made your decision. The hardest part of my journey has been accepting that I have a serious illness and that I am doing what is right for me and not just toeing the line because he or she said so. When I had my eye scans a couple of months ago, the technicians were adamant that I would require having contrast (dye) injected. (Contrast is made up of iodine). I refused the contrast point blank and they were nearly ready to strap me down and just do it anyhow, I demanded that they contact my Opthalmologist or my Endo or as a last resort the Endocrine department at the Hospital I was treated at, after taking 90 minutes to talk to someone they finally agreed to do the scans without contrast. Thankfully I did because my Endo advised that the contrast could have put me back into thyrotoxic shock and could take up to 3 months to show any affects. None of us are perfect and while I realise the Scan Technicians are qualified etc., they cannot be up to date with every illness or side effect or drug reaction in certain patients. I also do not get any info from Google or any other dubious website. I completely trust the info and guidance I have received from here and have spent hours and hours at the Library researching. Dosing involves a lot of tweaking, I have had numerous changes to dosage and medication on my journey, so hang in there it’s all back to that patience thing. Also, I have found it very helpful to keep a record of how I am feeling on a daily basis. I just write a line or 2 ie, feeling like crap, not hungry, didn’t eat lunch or dinner, rash bad today etc. Together with a record of all my labs so I can graph where my levels have been etc.,(I ask for copies of all my lab results), my Endo has found it really helpful. Happy Australia Day for tomorrow, take care and talk soon.
Cheers
Deb

[rae5]

#1176457

Thanks Kimberly. It took a couple of months for anything to change on the first dose, then he reduced it by 5mg, which I felt fine with and a few weeks after that I had huge positive results, and apart from TSH I was in range,mentioned before. Stayed on that dose for another month, then its now looking like going low so dose was reduced by 20mg. It’s just this lastest 20mg reduction that seems to be knocking me around a bit. I will definately take your advice and go to Doc if things don’t improve soon.Thanks!

[rae5]

#1176458

Deb, I am back to the research and havent made a decision as yet. Yes it will be my choice when the time comes. I think I just had a bad day that day and wanted a quick fix(there isnt one). It is taking me a while to fully get my head around whats going on. What a shock you must have gotten when you first went to your GP, then ended up in hospital and then suddenly had all this stuff to deal with!
The info on the contrast is very very helpful. I wouldnt have thought of that. It’s a very good thing you stood firm and didnt just go along with it. I love that you are your own advocate. I’m only just beginning, it’s been 4 months now and I hope that with more research I will gain more confidence to stand firm if the situation ever arises where I need to. My left eye lid is often purple and swolen when I wake up and sometimes it waters and feels a bit sore. The lid has drooped noticeably and the corner gets a bit irritated cos my eyelashes there arent in the right spot now I think, I’m constantly trying to open my eye properly cos the lid is drooping, but it’s not too bad. I guess that’s another waiting game to see what happens there.
I do like the idea of keeping a diary. Sometimes I find myself ridiculously bouncing around the house,going 100 miles an hour, today I’m very tired and opposite. Weird.
Happy Australia Day for tomorrow to you too! There are people driving around with huge flags on their cars here, we have fireworks etc on the forshore tomorrow. I haven’t made plans because who knows how I will wake up toomorrow. Will see what the day brings, then decide.
Oh, just remembered…when I did the whole internet/google thing to start with that scared the crap out of me. I got all sorts of just plain wrong information. I read all these amazing stories of natural ‘cures’ and was thinking to go natural for a while there. Thankfully, before I did myself serious damage I learnt more and realised that was a very very bad idea. I wonder how many others do themselves damage due to misinformation. – Scary!
Take Care
Rae

[Kimberly]

#1176459

@rae5 – I can’t recall if you’ve been in to see an experienced ophthalmologist, but it would be helpful to get a baseline evaluation done. The good news is that most patients will *not* experience significant eye involvement, but it’s good to get an experienced eye doc on your team early in the process.

Take care!

[rae5]

#1176460

Yes, I was thinking about getting my eye checked out. My Endo said he could see some eye signs (you cant miss the swolen purple drooping eyelid!) but didn’t refer me anywhere. I didn’t think to ask at the time. I’m more inclined to speak to my doctor, he seems to be more approachable, so will ask when I see him next month.
Thanks for your suggestion, I’m on it

[jaqeinquotation]

#1176461

“Rapper, Missy Elliott, has Graves’ Disease and she hasn’t worked in 3 years now. I imagine her career is ruined at this point. I understand this completely. I was an insurance broker and lost my license because I couldn’t work with it.”

I hope you don’t mind me responding in to your comment regarding Missy “Misdemeanour” Elliott. I’m happy to say that her career is far from “ruined” and being positive, I pray it never will be at any point. It’s true that she has had GD for 3 yrs and the we haven’t seen a video from her in that time but that woman is a beast when it comes to fighting for her life and not giving up on her dreams. She is so talented and like myself she REFUSES to give into this terrible disease for which they say there is no cure.
Just last year, she performed along side singer/dancer, Ciara on
BET’s Black Girls Rock!. I’m not sure if you know who Ciara is but when she’s on stage it’s evident that you better be able to keep up. She also has an artist that she has been working with by the name of Sharaya J and if you’re into twitter, hash tag: #banji just to get a glimpse of what Missy has been up to. She is without a doubt a musical genius and a true inspiration.

Not sure if the site will allow but I’ve posted the link of her most recent performance and her opening up about graves disease

http://www.bet.com/video/blackgirlsrock/2012/performances/ciara-missy-elliott.html

http://urltv.tv/10/08/missy-elliott-opens-up-about-graves-disease-on-swayinthemorning/

This disease isn’t easy and I’m not making light of it-hell I’m 2 weeks TT but I can’t give up or give in because if I do, if we do- we’re done.

[rae5]

#1176462

No problem Jaqeinquotation, it’s great to hear some good news re Missy and hopefully can gain some inspiration there. I feel for her with the effect on her career and is great she is back! I have noticed some newspaper articles also in regards to Missy, they include some basic Graves info, perhaps more people will be educated. I am sorry to hear about your own license/work. I am only just hanging in there too.

On the topic of my original post, I am now officially single. I invited him over last night and tried to give him some printed info on Graves that helped explain what we went through. I apologised ‘Again!’ and recognised how hard it must have been for him. He didnt want to know about it. I do understand everyone deals with things differently, he wouldnt take the info at all. The conversation progressed and I tried to talk about the reasons he wanted to continue to keep seeing eachother in secret. He just said well thats the way it is. I explained very calmly(wow!) how I was feeling about ‘sneaking around’ that i could see why he wanted that and that it was getting hard for me. I also have a son and it’s getting very difficult. It also just doesn’t feel right. I said that I would like to be able to go out to breakfast or dinner together. I kept saying I understood why he would feel that way and that I just wanted to talk about it.
Well, end result he again said ‘well thats the way it is..its not going to change so we’ll just leave it at this then’. He wouldn’t even talk about it. I didnt get the chance to even suggest giving his family the info, it really didnt work as hoped at all. I was hoping to talk about what we can do to try make things better and how could I help.
He left, I didnt try to stop him, relationship over, very sad.

I can’t change the way he chooses to deal with this, that’s his choice. But I can change my part in it. If I had been more patient things might have improved. But after that conversation I really doubt it now. I now choose to refuse to sneak around, it really doesn’t feel good.

Sorry about the use of the forum for relationship issues. I just needed to tell someone, thanks! I can see it would happen a lot though. Maybe one of my posts and my mistakes might help someone else oneday. Be patient!
Good news is I was calm and had my emotions fully under control, no yelling at all. Big improvement.

Thanks for being here. Bad day today.
Rae

[snelsen]

#1176463

Hi rae,
I think everyone here can relate to bad day, Graves’ and relationship stuff.
And, as things went south when you tried so hard, and did so well, perhaps another way to look at this, with the tincture of time, is question if you really wanted a partner who would stonewall conversations, and have secrets. I realize it is probably too early for you to think about this, but it might be helpful to really list the pros and cons of the person and the relationship. AND!
when doors close, other doors open! As long as it is known that you are associated with someone, it kinda closes the doors for other opportunities and perhaps another person sometime. Anyway, something to think about.

You did a great job, that is super … Really, with time, (and we all think it is way too much time…) you will be “you” again. Yep, this is true
The best of the best to you. Sounds you are a wonderful future companion for someone out there somewhere.

And, if it never happens, you can still be super very happy and single, as I am (: If it is not the right person for you, it simply is not right. I met a ton of nice men, but not the right one at the right time.

Shirley

[rae5]

#1176464

Hi Shirley, thank you so much for your reply. Reading your kind words and just knowing you have an idea of where I am at, has been really powerful and very positive for me. You sound very wise. I read your reply this morning(time difference) before work and it was what you said that helped me to actually go to work. I was very tempted to just go back to bed this morning, until I read your response.
I am thinking about your advice and hope to become a happy single like yourself one day soon. I think I get what you mean by never the right one at the right time.
I feel so lucky to have all of you wonderful people on this forum to talk to, this site has so much positive power!
You take care too. and, Thanks, your words and thoughts did make a difference to me.

[Author]

Posts