[Robboford]

in reply to: thousands of posts thousands of views, any conclusions? #1183990

Hi newmane, I have been on my Graves’ journey for over 4 years now and have posted many times on this forum about my journey. I am in Australia and our medical treatments may be different to wherever you are. In your post you have stated that some of us long term Graves’ warriors have not offered any advice on your treatments etc. In my experience, we are our own strongest advocates and this Disease and it’s effects are so different for each of us that it is hard to give any one advice. Knowledge is your strongest friend, read and research and become informed on the choices that will produce the best outcome for YOU! Search my posts and you will read about my journey from initial hospitalisation to today where I am assessed as being in the worst percentage of TED (my left eye is bulging by 44mm (1 5/8″ in your speak)) and I am still waiting for my antibodies to lower to enable the upcoming eye operations (I have tried radiation almost 2 years ago with no success and I am not willing to endure steroid injections due to the complications that may arise), so I am stuck in no man’s land waiting for the antibodies to co-operate. I am lucky to have very understanding medical professionals who are happy to discuss any of my treatments or elaborate on any information that I have found and give me their input. Thankfully I am still allowed to drive during daylight hours and when it is not raining and I still manage to hold a full time job. (Although after 61 years in business, I have been employed in the same job for 29 years the company I work for is shutting down this week and ceasing to trade). So I am hoping that I will be able to maintain my “Suck it up buttercup” outlook having so much spare time on my hands. I like you, wish this was a “trendy or newsworthy” disease that got more publicity, awareness and funding for research and I will make it my life’s challenge in trying to promote awareness once I return to my “old” normal self. (Whenever that may be). The road ahead will be full of good and not so good days and it really is about trying to make it through to the best of your ability. After reading my posts on my journey if you have any questions, I will try and answer you as honestly as I can. Good luck on your journey.
Cheers
Deb
(A.K.A. Robboford)

[Robboford]

in reply to: How do you deal with Insomnia??! #1183900

Hi,
Just wanted to chime in with your decision to have RAI. Hopefully you had made this decision after discussions with your medical team. I am currently going through TED although I had my Thyroid removed almost 2 years ago. Graves’ was a very frustrating journey but the TED journey is much harder and I wouldn’t wish it on my worst enemy. In my research and discussions with my Endo, I chose to have my Thyroid removed over RAI to reduce my chances of TED. My antibodies have been high throughout the whole of my almost 4 year Graves’ journey, so TED might have happened regardless of my treatment choice. Good luck and hopefully a return to stable levels not far off for you.
Cheers
Debbie
(AKA Robboford)

[Robboford]

in reply to: On ATD two years-plus? #1183740

Hi flora and my fellow warriors,
Wish I had some wise words I could impart, but this journey we are all on is truly a roller coaster. Up one day, down the next, blindly into corners or brick walls some days it just seems to go on and on. I am approaching the 4 year mark now and long for that day when “feeling normal” is every day. Hang in there, it is truly a marathon but I am always focusing on the light at the end of the tunnel (some days it is easier to focus on than others) and it mostly gets me through. The TED stage I am at now is more frustrating and harder to deal with than the 1st 2 years after being diagnosed before I had a TT, although back then I really thought that part was the pits. Sending cyber hugs your way and hoping better days and being stable is not far away.
Cheers and hugs
Debbie (AKA Robboford)

[Robboford]

in reply to: Radiation treatment for double vision #1183637

Hi DaylilySue, Prisms won’t be helpful to me according to my ophthalmologist. I currently use glasses for long distance. Have tried wearing a patch (my ophthalmologist tells me the double vision is only a problem when both eyes are open), but wearing the patch caused vertigo so not an option. Can’t count how many times I have missed a glass when I have poured a drink or how many times I have vacuumed over the same spot trying to suck up a piece of fluff, or how hard it is to navigate stairs (both up and down). Many fellow warriors will relate to this and many other problems/challenges with the double vision. Best wishes to you on your journey and please keep us up to date with your progress.
Cheers
Debbie (A.K.A. Robboford)

[Robboford]

in reply to: Radiation treatment for double vision #1183635

Hi DaylilySue, welcome to the forum. It is a very hard question to answer, I had radiation treatments for TED last February and although my left eye is a lot worse than my right, the radiation worked in my “better” eye and not at all in my left eye. My ophthalmologist is against the steroid treatments as he has had a high percentage of patients whose immune systems have been comprised so Radiation was the only option for me. After researching it I was not inclined to go ahead with the treatments but then really had no other option or treatments available to me. Both my ophthalmologist and endo guided me towards the treatments as there does not seem to be any info or research available for who it may work for and who it won’t. My “better” eye has not deteriorated any further since treatments although my “worse” eye has deteriorated and my antibody levels are still very high which has resulted in surgery being put on hold until the levels decrease. I am suffering from double vision and driving has been limited to daylight hours and fine weather only. Hopefully you will make a decision that you are comfortable with and it will be of some relief to you. This forum is awesome for answers and information and hopefully some of the fellow Graves’ Warriors will chime in with their experiences and thoughts.
Cheers
Debbie (A.K.A Robbford)
PS: I am from Sydney, Australia and some of our treatments and medication may be different to other countries.

[Robboford]

in reply to: TED (thyroid eye disease) seven years later #1183624

Hi Shirley, Sorry to hear the TED is giving you even more grief. I am also in the severe category and although my surgeries will be happening soon (hopefully), I have not had to suffer or endure the effects for as long as you. It is truly the worst part of the Graves’ journey. I too hope for further research and some inroads into treatments that will have a higher percentage of working. My ophthalmologist is adamant that even after almost 2 years and with my antibody levels still really high that we should be waiting for at least a reduction in antibody levels before he attempts surgery. You have been a source of inspiration and your knowledge, advice and guidance as a fellow warrior has been priceless. Hopefully in the future there will be better treatments and options available to sufferers. I am also able to drive during daylight hours and dry conditions, but due to my failing eyesight I have had to give up cross stitch and quilting. On the plus side though, when I received Radiation treatment, the centre I attended had knitted squares for patients and carers to do which are then made into blankets for cancer patients. So in the past year, I have completed 248 squares which will be made into blankets for cancer patients. So out of something bad there is always a plus side. Hang in there Shirley, I am praying that there will be some “better” days ahead for you, and thank you for your contribution and wisdom to this forum.
Best wishes and sending cyber hugs from down under
Debbie (A.K.A. Robbford)

[Robboford]

in reply to: Just an update. #1183325

Flora: Boomer Humour – love it. You’re a poet and didn’t even know it – lol. I look forward to catching up with him also. To my fellow warriors, thanks for posting your updates, gives hope to the rest of us still on the Big Dipper.
Cheers
Deb
(A.K.A. Robboford)

[Robboford]

in reply to: My Graves / Eye Story in Germany and USA #1183528

Hi Kimberly,
Thanks for your comment, will keep you all updated.
Cheers
Deb

[Robboford]

in reply to: Is your endo supposed to address symptoms? #1183337

Hi BarbaraLK,
Your symptoms sound very similar to mine when I was first diagnosed and hospitalised with Graves’. In my case though, I was suffering from heart failure. I couldn’t tie my own shoe laces, had major difficulties dressing and when I fell over I just couldn’t pick myself up off the floor. for me though I also experienced swelling from fluid retention (I had put on 12kgs approx. 25lbs, which was all fluid). I am not a Doctor and not saying that you could be suffering from the same problem but has your Endo and or GP been monitoring your heart rate and blood pressure, it may be worth discussing with your GP at least. the best advice I can give you is to read and learn about this Disease from reputable sources. Search this Forum for stories about fellow sufferers and arm yourself with being better informed, there are also lots of articles and links to resources through this website. The best thing I have found is to be my own best advocate. Speak out, discuss your issues and concerns with your Doctors, don’t be put off, each of us are the ones suffering and travelling on this journey and deserve to get the answers and information we need. Stay strong and keep fighting to achieve wellness, it is a long journey and full of ups, downs and speed humps along the way, and this Forum and it’s wonderful contributors is AWESOME and has helped me and reassured so many times, that I would never have found the strength to tell myself to “Suck it up Buttercup” to get through each day or found the answers or help to the numerous questions I had.
Cheers
Deb
(A.K.A. Robboford)

[Robboford]

in reply to: Insomnia post prednisone use #1183257

Hi ppataram,
Although I am currently going through TED, my Opthalmologist is totally opposed to prescribing steroids so I can’t offer any of my experiences with it. He has had 5 patients that have all had suppressed Immunes resulting from taking the Steroids, so he is unwilling for me to take them. Hopefully now that you have stabilised; some, if not all of your symptoms will settle. Best wishes, stay strong and keep fighting.
Cheers
Deb
(A.K.A. Robboford)

[Robboford]

in reply to: Just an update. #1183323

Hi Barbra, Sue, Flora and my fellow Warriors,
Great to hear that for some, “normal” is almost back in your lives and if not, that you are close to getting there. For me, my journey continues with still raging antibodies, muscle aches (a slight lessening of the severity and frequency of the cramps now that I have doubled my dose of my magnesium). After my latest blood test yesterday, hopefully my magnesium levels are back to normal or close to it. It is quite astounding to me that after 12 months of complaining and suggesting to my Endo that “Should I try Magnesium?” and him saying no harm in trying it and him being astounded that when I demanded my magnesium level be tested the results came back that I was clinically suffering from low magnesium levels. (He then told me to double the dose at my next visit). It has taken at least 3 months for the tablets to kick in though, and who knows whether it was the supplements or something else that caused an easing of my cramping. I almost wanted to have my leg amputated before Christmas after suffering from a calf cramp in my leg for 28 days solid. I am certainly an “interesting case study” according to my specialists and various medical professionals involved in my treatment. Wishing you all continued wellness and stable labs (lol).
Cheers
Deb
(A.K.A. Robboford)

[Robboford]

in reply to: My Graves / Eye Story in Germany and USA #1183526

Hi Auger and my fellow Warriors,
Thanks for posting about your journey, it helps all of us on our own journeys to realise we are not alone. The TED journey is the hardest part I have faced in dealing with Graves’. To know that my experiences are similar to others garners my resolve and fighting spirit to keep fighting this crap disease. Never a truer word has been spoken that this Disease “SUCKS”. I am currently waiting for my 1st surgery date for OD which will happen in the next 4 – 8 weeks. We were hopeful that my antibodies may drop, but they are still raging full steam ahead, so will go ahead with the surgeries anyhow. Best wishes for continued wellness and hopefully an end to the rollercoaster. To my fellow warriors, keep fighting and stay strong.
Cheers
Deb
(A.K.A. Robboford)

[Robboford]

in reply to: Please Read – Bulletin Board Coverage Through 10/6 #1183109

Best wishes for a positive outcome and a speedy recovery Kimberly.
Deb
(A.K.A. Robboford)

[Robboford]

in reply to: Graves’ and TED – Status update #1183070

Hi all,
Thank you for your replies and comments. I spoke too soon on the muscle cramps! Back with a vengeance last night. It is the weirdest sensation, woke me up from sleep. My calf muscle contracted to the point of my leg looking like a chicken leg! My husband freaked out and couldn’t believe how it sucked in and stayed like that for about 25 minutes. This morning my muscle is still rock hard although my leg is almost back to normal size. Hopefully they will be few and far apart, before I started taking the magnesium the muscle would stay hard for about about 2 – 3 weeks with intermittent contracting. I will discuss the time frame again with my Opthalmologist and maybe he is erring on the side of caution and giving me a worst case scenario. Nothing on my journey has followed the “normal” pattern though, so will take it day by day. I am lucky that my Opthalmologist will be my Surgeon and he has a great relationship with my Endocrinologist so he will be up to date with all my labs and status. Friday here in my part of the world, so have a great weekend all.
Cheers
Debbie
(A.K.A. Robboford)

[Robboford]

in reply to: TED makeup tips? #1183086

Hi Janetf,
Welcome to the Forum. This a great resource for information and advice from fellow sufferers. As someone who has been diagnosed with severe TED, I also cannot stand make up near my eyes either. I have grown my fringe long and although it covers part of my eyes, it has limited the strange looks and staring that happens when I am out in public. Not sure if this is an option for you, but hang in there. The Eye Disease has been the most frustrating and challenging part of my journey, but I have drawn strength (that I didn’t know I had) and inspiration from my fellow Warriors here. Best wishes on your journey.
Cheers
Debbie
(A.K.A. Robboford)

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