[Robboford]

in reply to: stress question #1182559

Hi all,
I too am struggling with the length of this journey whilst trying to stay upbeat and positive. At my last Endo visit I jokingly asked if he could prescribe me a bottle of patience pills to which he replied that he couldn’t but if I could find someone who could he would ask for a lifetime supply himself. It is such a struggle to know there is light at the end of the tunnel but none of us know how long the tunnel is. Continue to battle hard Warriors!
Cheers
Deb

[Robboford]

in reply to: Hi all, back in touch #1182192

Hi Shirley,
Thank you for your recommendation. Only just got to the stage where the eye patch is not working and now looking at the tape option. Greatly appreciated.
Cheers and hugs from down under!
Deb

[Robboford]

in reply to: Hi all, back in touch #1182191

Hi Karen,
Sorry for not replying earlier but life has been busy and dealing with TED and TM has been challenging and frustrating. To date, I have not learned much at all about TM but like a lot of my journey, I seem to have become the poster child for some of the effects of Graves’. My Endo did not have much information on TM but he and I both said we would research and at my next visit (23rd June) he will let me know what information he has been able to find. I will post any of our findings or information that may be of interest. Take care and battle on.
Cheers
Deb

[Robboford]

in reply to: Hi all, back in touch #1182190

Hi Karen,
Sorry for not replying earlier but life has been busy and dealing with TED and TM has been challenging and frustrating. To date, I have not learned much at all about TM but like a lot of my journey, I seem to have become the poster child for some of the effects of Graves’. My Endo did not have much information on TM but he and I both said we would research and at my next visit (23rd June) he will let me know what information he has been able to find. I will post any of our findings or information that may be of interest. Take care and battle on.
Cheers
Deb

[Robboford]

in reply to: stress question #1182555

Hi Christy,
I can totally relate to your post. I think stress does impact our journey, but I also think some of the feelings you were experiencing are all part of this journey. I had one of the worst days ever yesterday; all it took was one small issue to upset me to the point of almost losing my mind with rage. I really hated the person I was yesterday. I was mad at the whole world and I felt anxious, weepy and just totally overwhelmed with everything. I even went to bed at 7.30 pm which is so out of character for me, but I just felt that i was going to take out my frustration and rage on my hubby and he hadn’t done anything wrong. For me the Eye issues have become the hardest and most frustrating part of my journey. Hang in there and hopefully like me, today is a better day for you. (Well I still feel like crap, but the rage isn’t as prevalent so I am projecting a better outside appearance and attitude – but look out anyone who upsets me – lol).
Take care, sending cyber hugs your way!
Deb

[Robboford]

in reply to: stress question #1182554

Hi Christy,
I can totally relate to your post. I think stress does impact our journey, but I also think some of the feelings you were experiencing are all part of this journey. I had one of the worst days ever yesterday; all it took was one small issue to upset me to the point of almost losing my mind with rage. I really hated the person I was yesterday. I was mad at the whole world and I felt anxious, weepy and just totally overwhelmed with everything. I even went to bed at 7.30 pm which is so out of character for me, but I just felt that i was going to take out my frustration and rage on my hubby and he hadn’t done anything wrong. For me the Eye issues have become the hardest and most frustrating part of my journey. Hang in there and hopefully like me, today is a better day for you. (Well I still feel like crap, but the rage isn’t as prevalent so I am projecting a better outside appearance and attitude – but look out anyone who upsets me – lol).
Take care, sending cyber hugs your way!
Deb

[Robboford]

in reply to: Hi all, back in touch #1182187

Hi ,
Thanks Kimberley, Shirley and Laurel for your replies. Both my Endo and Opthalmologist have both said that with my high antibody levels it is not the right time to be considering the surgical route until they settle down. They have both described my Trab as excessively high (range here is less than 1.0), my last reading was 18.8, Tpo is 121 (range here is 0 -35) and hasn’t really changed significantly either way for at least the past year (Both were a lot higher while I was hyper and before TT). They both feel that I am still in the active or “hot” phase as I still get varying degrees of swelling, redness and pain. They have both stressed to me that the Radiation was only to stop my eyesight deteriorating further and that it would not stop the swelling etc. Both together with the oncologist have said it may take 6 months for the Radiation treatments to take full effect. (Let’s face it with all the complications and nearly every possible symptom of Graves’ affecting me, I am probably the one patient that will take the full 6 months). (I keep telling everyone that I am “special” to be the poster child for Graves’ as it is quite common for me to hear from my Medical team that I drew the short straw when it came to Graves’ and that they have not really had another patient that has been on the same journey as me – at every Endo appointment he usually has a new Doctor or Student that he wants to show pretibial myxdema to and if I had a dollar for every time that someone says “I have read about it, but never seen it in real life”, I could retire tomorrow. I don’t mind though, anything that promotes awareness and education about Graves’ has got to be a good thing). I saw another Opthalmologist last December before I had the radiation treatments as it was such a hard decision to make whether to have the Radiation or not and he also confirmed that Radiation was the best route to take. (I still am not sure whether it was the right decision to make, but it’s done now so hoping I won’t regret it later in life). In the last 4 weeks, I have had to start wearing any eye mask to sleep in as I am having trouble closing my eye lids. I will be discussing your comments with both my Endo and Opthalmologist so will let you know what they say. Maybe this is an area where treatment in Australia varies from what is accepted for you in the US? Have a great day all.
Cheers
Deb

[Robboford]

in reply to: Hi all, back in touch #1182183

Hi all,
Well, what an eventful past couple of months, the journey continues and to be honest I have found this part of the journey to be the most challenging. I continue to suffer from the after affects of the Radiation. The tiredness I feel by about 3.00pm every afternoon has been quite confronting. I have always been a go getter and a glass half full type of person. In the past I have pushed myself to remain positive and to fight to remain up beat and try and maintain a “normal” life. It has been very hard to accept that my body just isn’t working at it’s full capacity and no amount of me telling myself I am Wonder Woman and can do anything, my body is just not co-operating. I saw the ophthalmologist on Monday and he is hopeful that the Radiation has stopped any further deterioration of my eyesight, but the Double Vision continues in earnest and now my right eye is showing signs of TED. Hopefully though, the right eye has stabilised and won’t get any worse although as I keep being reminded things change. (Tell me something I don’t know already – lol). My antibodies are still raging and are not showing any signs of lowering so for now, any chance of Surgery to correct the Double Vision is at least 6 or 12 months away. I am now only driving to work and back (as it is a route I have taken for the last 27 years), I am not driving in peak hour, at night time or when it is raining. The ophthalmologist has told me prisms will not work, patching one eye is not an option and to try and deal with it the best I can. he has now prescribed pain killing eye drops as well as I am experiencing quite a bit of pain around my eyes and also sometimes my temples still fill feel like they have been drilled and I have had a part of my skull removed. The Oncologist has said that this is probably from the Radiation and will diminish in time. it would seem that my body was quite sensitive to the radiation in comparison to to other patients and I have been unfortunate to have some of the side effects that they didn’t think would happen. My appetite has diminished severely (although this started after my TT) and most days I will only eat a sandwich and sometimes even have to force that in, just so that hubby is happy that I have eaten something. Insomnia is another issue but I have always been a bad sleeper for as long as I can remember. The muscle aches, pains and cramps haven’t diminished, just a part of everyday life for me now. Of course with the antibodies still raging, the pretibial myxdema is also still an issue but I keep saying to myself that whatever doesn’t kill you makes you stronger and my new self motto is “Suck it up Buttercup” but wow it is hard to maintain and radiate a positive attitude. Went to Endo last week and he is quite surprised that my weight hasn’t dropped with the meagre amount of food that I am eating, but really that is the least of my worries at the moment. At that visit my blood pressure, heart rate and temperature were elevated, together with T4 being high, but we agreed to stay with current dosing in order for me to get over the Radiation and hopefully stabilise and will readdress in 3 months. I have now also been diagnosed with Bells Paulsy (another of those auto immune conditions) on the left side of my face which hopefully won’t get worse (I have had 2 flare ups with my face and neck swelling badly but it did settle in a couple of days so at this stage we will just monitor it and report back at my next visit), but as we all know there are no guarantees on this journey. Sorry to sound like a sad sack, seems like a huge whinge, but I am thankful for my life even with all the woes, life is for living and there are so many people worse off than me, that things will get better for me – just don’t know how long it will take. Will try and get back to my regular presence on here and if there is 1 piece of advice I can pass on to the newbies it is to keep a journal or diary of your personal day to day life and just a short note on any symptoms you may have or how you are feeling that day has been really beneficial. My doctors have found it be invaluable. Keep fighting all and hang in there – good things come to those who wait! (We just don’t know how long we have to wait – lol).
Cheers, hugs and kisses,
Deb
A.K.A. Robbford

[Robboford]

in reply to: Hi all, back in touch #1182174

Hi all,
I will post my later experiences in posts to follow, but will go back to my TT in this post. As most of you will know, it took nearly 2 years for my labs to stabilise enough for the TT to go ahead. The main worry was going into Thyrotoxic Shock during surgery that we were hoping to avoid. Well, things don’t always go to plan, (I had 3 pre-surgery appointments to ensure that the risk was minimal). I checked in at the hospital at 7.00 am on the morning of surgery, I was prepared for Surgery and in Theatre by 7.30 am and was lying on the operating table waiting to be knocked out. I was then told that my Surgeon was delayed conducting another procedure and was introduced to my “new” Surgeon. Not the best of timing, although in hindsight the replacement Surgeon was fantastic, but still I had spent ages researching Surgeons and had based my choice on recommendations from both my Endo and Opthalmologist, at this stage though I didn’t get much of a chance to voice my concerns or questions and felt fairly vulnerable and somewhat disappointed. So, I finally woke up in recovery with ice bags on my neck and my chest and asked what time it was and was shocked to discover that it was 3.20pm. I stayed in recovery for about 1 1/2 hours and had a nurse constantly by my side taking observations every 15 minutes which I though was bit strange. I was finally wheeled back to the Ward and the Surgeon came to visit about 1/2 hour later. She informed me that I was one of the most challenging patients she had ever operated on. My thyroid and nodules was one of the biggest she had ever encountered and went almost to my ears, the Surgery in itself took 5 1/2 hours and during Surgery my Heart Rate and Blood Pressure elevated to worrying high levels and it was quite an effort to stablilise me. I asked what my Thyroid had looked like and whether there were any signs of any abnormalities or growths that she was concerned about. She said other than a large amount of blood (all through my journey everyone had remarked that I had a high rate of vascularity in my Thyroid, so this wasn’t a surprise), other than being very large, she said that the top parathyroids were fine and intact but that they couldn’t locate the lower ones and that the Thyroid seemed ok and that I would have to wait for pathology results for final confirmation. Overall I felt very groggy and disorientated but no real pain. My voice was quite hoarse, but because one of the Nurses I had seen at my pre-surgery appointment had a lot of experience with Thyroid Surgery she told me to move my neck and talk as much as I could which would ensure a faster and easier recovery. At 8.00 pm that night, I had eaten a bowl of clear broth, was swallowing ok and I was making tea and coffee for the 3 other patients, in my room and felt like I was Wonder Woman (lol). By 2.00am the next morning, I felt like I had been run over by a steamroller. I had trouble breathing and had very acute pains in my chest. More observations and then pain killers for the chest pains which the Nursing staff could not explain. The pain killers had no effect and I spent the rest of the night in severe pain (felt like I had a ton of bricks on my chest with no respite). I don’t think the Nurses took it all that seriously as all my observations were normal. The next morning when I had a wash, I was surprised to see the amount of bruising I had. My whole neck area to my ears and as low as my belly button was black and blue with bruising and was very tender to touch. The Surgeon and Endo both visited me and advised that due to the complications in Surgery and unexplained chest pain that i would stay in Hospital at least another night. During the course of the day, I had Blood taken every 6 hours, as they were now concerned about my calcium levels and was prescribed Calcium tablets. Due to my previous Thyroid induced heart problems, I was not allowed to lie flat and my bed had to be inclined at minimum 45 degrees and as was not used to that, resting or sleeping was virtually hopeless. On the plus side, my wound area was very swollen but looked fine. By the next morning I had had enough and just wanted to get home to my own bed and pleaded with the Endo to have me released so that I could try and rest at home. My voice was still quite hoarse and my brain was still really foggy, the chest pains weren’t constant (would come and go with no real pattern), so they relented as long as I promised to come straight back to Hospital if things worsened. I asked about the pathology results before I was discharged and they told me it was fine. The next 2 weeks passed in a bit of a haze, the anaesthetic really seemed to knock me about and I had still had the chest pains on and off, and also had an increased number of muscle cramps and aches. I still continued to take the calcium for another 6 weeks. At my next appointment with the Endo, (5 weeks after Surgery), he was happy with the way my scar was healing and other than a bit of roughness along the scar, I was also pretty happy. The Bruising had only subsided a week before this appointment and my voice still wasn’t 100% but was improving. My high range voice was still quite affected though and I was informed that this was a different muscle and would take a bit longer to recover. At that appointment i was also told that they had found a cancer spot in my Thryoid and that it appeared that it had all been removed and that they would monitor my blood test results (which they scheduled monthly) so they could pick up any changes fairly quickly. My levels while still not quite right were headed in the right direction (other than TRAB and the TPO antibody levels which were still really, really high). At this stage, my brain still seemed a bit scattered, the muscle cramps and aches were still fairly constant and of course the pretibial myxdema was still affecting my right shin and my left eye (right slightly but not as much as left) was deteriorating rapidly. The double vision was extreme and I was booked in to see the opthalmologist in early December (next posts will talk about the next chapter and the (now) ongoing battle with TED). As at today, my Calcium levels have finally stabilised, the blood tests are showing no changes in relation to the Cancer and my levels (other than antibodies which are still raging) continue to almost stablilse, my talking voice is back to normal, but high range and raised voice is still not working properly. I still feel as though my mind is not quite back to normal, but the Endo has told me that this is to be expected after the length and trauma of Surgery The muscle cramps and aches are still continuing and at the next Endo visit we are going to discuss and research Thyrotoxic myopathy. So hopefully, the Endo side of things will even out. The eye issues are another chapter and i am currently recovering (slowly) from radiation treatments so more to follow on that journey in the next few days ……..
Take care all, and I hope to catch up with everyone’s posts and reading our new member’s stories and also update you on my TED journey over the coming days.
Cheers
Robboford

[Robboford]

in reply to: How many have had proptosis reverse naturally? #1181200

Hi Raspberry,
I think my swelling has reduced slightly since having TT on the 19th August, however I am having issues with Double Vision at the moment. Not sure whether this will pass or will get worse but won’t see my opthalmologist for another 5 weeks, so will be able to tell you then how much they have gone down. (I have still got bruising and swelling around my throat/neck and maybe that is why people are saying that the swelling on my eyes has gone down so time will tell). At my last opthalmologist appointment my left eye was protruding 31mm and my right eye 27mm. Will let you know the outcome and will also see my Endo this Tuesday so will see what his comments are.
Take care
Deb

[Robboford]

in reply to: TT 8/8 #1180559

Hi Laurel,
It’s Wednesday afternoon on the 7th in my part of the world and just wanted to wish you well for your Surgery. Will be thinking of you and sending prayers. Hopefully you got through your to do list and will be able to rest and recover after you come home. Take care and all the best.
Cheers, hugs and kisses
Debbie

[Robboford]

in reply to: One of “those” days. #1180415

Hi Barbra,
I hope you have had a couple of better days. We all have those crap days you described and this Forum is great place to vent, whine or rant. Hang in there, hopefully those crap days became fewer and further between and you have now given yourself a good talking too and have re-energised your fighting spirit. Seriously though, we all have them and it is very difficult for others who have not experienced Graves’ to truly understand what everyday life is like for us all. Hang in there and stay strong.
Cheers hugs and kisses
Deb

[Robboford]

in reply to: One of “those” days. #1180414

Shirley,
You are more than entitled to have a whine or 2 or 3. You have been an amazing rock of strength to me and many others on this journey. Some of these “so called” medical professionals that we have all encountered must have learned their bedside manners from god knows where (Corn Flake packets maybe), but I am a true believer in what goes around comes around. I don’t wish Graves’ or TED on anyone, but one day they will experience their own medical issues and will see life from our perspective. I don’t want to offend you and although I am 47 (most days I don’t feel that old), but can I be an honorary granddaughter? You sound like you would make an excellent groovy grandma, and one day I am hoping to attend one of the conferences over there and get a chance to meet all you wonderful, wonderful souls who have helped me, inspired me, educated me and at times given me the courage and the belief that I can come through this crap journey with my sanity intact. You truly are inspirational, hang in there any maybe one day when I win the Lottery I can shout you a trip over to our wonderful land Down Under.
Cheers, hugs and kisses
Deb

[Robboford]

in reply to: Sue’s TT – July 16, 2013 #1180334

Hi Sue,
Thank you for effort it would have taken to write about your experience. Sorry to hear you had to go through the waiting game, I am sure I wouldn’t have handled it as well as you did. Wishing you a full and speedy recovery and hopefully you can drag out the husband waiting on you for a few more days, cause it’s probably not going to happen again for a while (if ever – lol). I look forward to reading more about your recovery over the coming days, but for now relax and take it easy.
Cheers, hugs and kisses
Deb

[Robboford]

in reply to: what is happening to me??? #1180310

Hi and welcome,
Sorry to hear you are having such a hard time of this crap Graves’ Disease Journey we all find ourselves on. Other posters have posted some very good advice and I just wanted to chime in and say that knowledge is power: read all that you can, the video presentations on TED are excellent and take advantage of the search function to read up on previous journeys. Before you book in for your cat scan, if you can, check with your Endo as to whether you need the contrast that is sometimes requested as part of the scan (The contrast contains iodine, and sometimes people that are hyperthyroid can have a reaction to it, the reaction can occur days, weeks or even months after having it). I refused it outright when I had my scans done and was not popular with the staff. After checking with my Endo at my next visit, he confirmed that it would not have been good for me to have the contrast. Every journey is different though, so this may not apply to you. Once again, this Forum is brilliant and if you just need to post a message to vent or have a question to ask, there is always someone who will post back a reply. Hang in there, time is also a great healer and with time things will get better. Take care.
Cheers, hugs and kisses
Deb

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