[Robboford]

in reply to: How Long Does it take? #1172030

Hi bellatini,
I have been on meds for almost 9 months now in an effort to get my levels down to enable surgery to take place. Over here in Australia we seem to take a lot different approach to the US with Treatment options etc., Not sure why or what the thinking is but for me my journey has always been aimed towards stabilising my levels and then proceeding with Total Thyroid removal. In stating this though, I have a wonderful band of Health Professionals guiding me on my journey and have the utmost trust and faith in their efforts to get me back to “Normal”. Every case is different and although I haven’t gone into too much detail previously, I presented at hospital in a severe life threatening state of Thyrotoxicosis (hindsight is a wonderful thing). Even 9 months on, I am struggling to remember when I felt normal previously – I had always placed myself last in priorities and just battled on regardless. I was in absolute shock (and denial) when told I was in Heart Failure and had this incurable Disease. The weight loss didn’t affect me, quite the opposite in fact. Due to the Heart Failure fluid had invaded my body which masked some of the Graves symptoms. I had in fact put on 18kgs in 2 weeks (approx 40lbs) and although my clothes were a bit tight, having previously lost a lot of weight 7 years earlier scales don’t mean anything to me. If I hadn’t been able to fit into my clothes, maybe I would have jumped on the Scales – but there is that wonderful hindsight again. The bulging eyes had never worried me because as long as I can remember (as far back as 6 or 7 years old) I have been told that I had “Don Knotts” eyes. Over half of my Medical support staff are too young to even know who I am referring to as I am sure a lot of the “younger” (I am only 46 years young) Forum Members have no idea who Don Knotts is! I am looking forward to my next Endo visit (1 week from today) as it will be interesting to see where my levels are now. I am currently seeing my Endo every 4 weeks after upping meds even though my Liver was reacting to the medication. (T3 is just not getting low enough). So here’s hoping my Liver is still relatively Ok and my Levels are getting closer to “Normal”. Hang in there, there is light at the end of the tunnel (admittedly the light goes out some days and it is hard to see the end of tunnel), I know I am not alone on this journey and have been sent on it to hopefully impart some knowledge and support to others along the way, the same way the support and understanding of Forum members like yourself and many others have lifted my spirits and given me hope (and guided me back to that light at the end of the Tunnel).
Take care
Cheers, hugs and smiles
Debbie

[Robboford]

in reply to: Curiousity… #1172047

Hi Bri,
I am one of the lucky ones to be affected by pretibial myxedema as part of my “Graves” journey. It was initially swollen ankles and a red rash on one leg that prompted my first GP visit which resulted in going to the Emergency Department, being admitted and becoming a fully fledged member of the “Gravers” Club. The condition is very uncommon in that my GP had no idea what it was, my Endo and Cardiologist wasn’t sure and after doing my own research and drawing their attention to it, I became a sideshow exhibit to the whole of the Endo Department at my hospital because the condition had been so rarely seen in real life. I currently use a steroid ointment to control the rash and if I don’t, the itching leads me to scatch which leads me to broken skin and bleeding – not a pretty sight. My Endo has told me that due to my Thyroid condition and medication my skin is quite thin (over my whole body) and I am more prone to cuts and bruises etc. (Using the Steroid ointment for too long will also cause thickening of my skin and darkening so they are trying to wean me off it). (I tried to only use it every second day, but the itching became too much and I am now trying top use it sparingly). Working in a timber yard and not being a girly girl type, I am always helping out the guys or doing things at home where I bump and scratch myself quite regularly. This really worries my Endo, my partner and my co-workers but I am never going to win any “Lovely Legs” competition so I just go with the flow. Being on Blood Thinners only adds to my tendency to bruise so all in all it’s just another of lifes experiences.
Cheers, smiles and hugs
Debbie

[Robboford]

in reply to: Newly diagnosed and wanting someone to talk to (sorry a little long) #1171986

Hi Bri,
Stay strong. The members of this Forum are wonderful. Although I have only just registered, I have been a regular follower since being diagnosed with Graves last September. I will share my experience over the next couple of days, but all I can say is that you will have bad days and you are not alone there. I experienced my first really bad day about 3 weeks ago, where I felt like I could kill someone just for annoying me and I have never, ever been a person who felt sorry for myself or had dark thoughts etc. Having not been aware of the full impact that Graves can have, I had nowhere to turn and really thought I was going insane. After reading through other suffererers experiences on this Board, I was reassured (and relieved) to discover I was in fact normal. My symptons and complications are close to yours so I look forward to sharing our stories. I give thanks every day that “I have 2 arms and 2 legs” and have carried that thought with me throughout my life, so I really can’t complain, this is one of life’s curved balls that has been thrown to me and I will rise above it and come out the other side. I am currently on 22 tablets daily and am looking forward to my levels stabilising so I can go ahead with Thyroid removal. I am currently being monitored every 4 weeks by my Endo as my last Blood Tests showed my Liver was not happy with all the meds, so fingers crossed that has not changed too much and I can continue my dosage to get me closer to my op. (Even though my Liver was not happy, after discussion with my Endo my Neomercazole 5mg was increased to 4 a day (up from 2 a day) 2 weeks ago, so I am anxiously waiting my next results). (Sorry different meds name/s here in Australia). So, Blood Test tomorrow, Endo appointment Tuesday week and it is onwards and upwards from there. To all who have given me hope, laughter and inspiration through this Forum – Hugs, Kisses and Thank you – it means the world to me. Till our next contact, hang in there.
Debbie
Sydney, Australia

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