[Robboford]

in reply to: Wish me luck-surgery Friday! #1179085

Hi Karen,
Happy to hear you are home. The waiting is a killer, but hopefully will pass quickly for you. Thinking of you and are sending positive thoughts and wishes your way for the results.
Cheers,
Deb

[Robboford]

in reply to: Wish me luck-surgery Friday! #1179066

Karen,
Sending prayers and thinking of you from across the seas! Will have you in my prayers and thoughts while you navigate through this crap detour. I know words are easily said, but my thoughts are deeply heartfelt and I, together with all your fellow Warriors wish you all the best. You have been through so much and have been so strong that I am confident that you will get through this. I wish I wasn’t so far away so I could be there holding your hand or just giving you a hug when you need it. Stay strong and remember “Today is the tomorrow we were worried about yesterday”
Cheers, hugs and kisses,
Deb

[Robboford]

in reply to: Another “I can’t take it anymore” thread :( #1179053

Hi Sue,
Just typed a long post and lost it all – Aaaaargh. I am going through one of those down, feeling blue patches at the moment. I think it is coinciding with an antibody attack at the moment. My Eyes are giving me grief, the pretibial myxdoema (spelling?) has flared up and I am over it all. I am usually so positive, but at the moment I have had a gutfull of this Disease and I am sick and tired of being sick and tired and had enough of all the pill popping (I was so peed off last night that I have worked out I have had 19,364 pills in the last 21 months up till today – I have had heart complications, have got TED and have been on a block and replace regime as part of my journey). Over the last 21 months of every now and then I get into one of these funks and it just seems to make me want to give up the fight. I try and reinforce my fighting spirit and my rage against this horrible, horrible Disease. Usually when people ask me how I am, I reply that I have got 2 arms, 2 legs and breathing on my own, so am doing a lot better than other poor souls out there, after all there is nothing anyone can do for me – no magic pill or cure or even a definite time frame when I will be back to normal. (I actually can’t remember what it feels like to wake up and feel “NORMAL”). I know it will pass though, and I will have my fighting spirit back and hopefully this will be the case for you. Graves’ Disease sucks and until people (including the medical professionals) have walked a mile in our shoes, no one can truly understand the Journey or impact it has on our lives. Hang in there and sending you cyber hugs from down under.
Cheers
Debbie
(A.K.A. Robboford)
PS Thanks for reading all, and for being here – really truly appreciated!

[Robboford]

in reply to: Another “I can’t take it anymore” thread :( #1179052

Hi Sue,
Just typed a long post and lost it all – Aaaaargh. I am going through one of those down, feeling blue patches at the moment. I think it is coinciding with an antibody attack at the moment. My Eyes are giving me grief, the pretibial myxdoema (spelling?) has flared up and I am over it all. I am usually so positive, but at the moment I have had a gutfull of this Disease and I am sick and tired of being sick and tired and had enough of all the pill popping (I was so peed off last night that I have worked out I have had 19,364 pills in the last 21 months up till today – I have had heart complications, have got TED and have been on a block and replace regime as part of my journey). Over the last 21 months of every now and then I get into one of these funks and it just seems to make me want to give up the fight. I try and reinforce my fighting spirit and my rage against this horrible, horrible Disease. Usually when people ask me how I am, I reply that I have got 2 arms, 2 legs and breathing on my own, so am doing a lot better than other poor souls out there, after all there is nothing anyone can do for me – no magic pill or cure or even a definite time frame when I will be back to normal. (I actually can’t remember what it feels like to wake up and feel “NORMAL”). I know it will pass though, and I will have my fighting spirit back and hopefully this will be the case for you. Graves’ Disease sucks and until people (including the medical professionals) have walked a mile in our shoes, no one can truly understand the Journey or impact it has on our lives. Hang in there and sending you cyber hugs from down under.
Cheers
Debbie
(A.K.A. Robboford)
PS Thanks for reading all, and for being here – really truly appreciated!

[Robboford]

in reply to: got an “angry” email from endo #1179021

Hi all,
When my opthalmologist sent me for CT scans, the form he filled out noted contrast in one place and no contrast in another. Through my own research, I knew that the contrast contained Iodine and that I should not have it. The radiologist actually called in security to restrain me to get the canula inserted so that they could administer the contrast. I became very vocal and threatened legal action if I had an adverse reaction. My research had led me to discover that the contrast could have put me back into Thyrotoxic shock (This was the original starting point and having to spend 2 weeks in intensive care on my Graves’ journey). I pleaded with them to contact my Endo, Cardiologist, Surgeon, Opthalmologist or any Lab technician to confirm this. I don’t know how hard they tried, but it took them an hour to finally say OK we will do the scans without the contrast and you will have to have the scans repeated if I was incorrect. At all times, I tried to remain respectful and told them that although they are experts in radiology, it is my body, my health and ultimately my decision and that it was impossible for them to be up to date on every condition and/or reactions to contrast etc. I still think that they thought I was a smarty pants and that they were offended. At my next Endo appointment I questioned my Endo and he confirmed that the contrast could have affected me the following week, month or 3 months ahead or maybe not at all. When I asked how severe could the reaction have been, the Endo replied that it could have sent me back into Thyrotoxic shock (not somewhere, I ever, ever want to visit again). My motto has been and will continue to be “My body, my health, my decision” and hopefully I will make informed choices. Keep up the fight my fellow warriors and take care.
Cheers, hugs and kisses
Debbie
(AKA Robboford)

[Robboford]

in reply to: Help the GDATF by Sharing Your Story! #1176906

Hi all,
Thank you for your kind words. I also live in hope that one day I will get to meet you all and say G’Day mate!
Cheers, hugs and kisses
Debbie

[Robboford]

in reply to: Help the GDATF by Sharing Your Story! #1176903

Hi all,
Just a quick little verse (I didn’t know if there was a time limit so have put this together quickly and although it’s not very good, it is directed to everyone in our GDATF community, from the people whose names we see to the (no doubt) many, many nameless people behind the scenes who have all become my inspiration – well done all. Your immense support cannot be written in words, but means so much to me).

The GDATF and it’s wonderful community
has taught me so much about auto-immunity.
With information and support I trust,
joining in is certainly a must.
The stories and questions we share
are read and answered by people who care.

From the sweating, the aches and pains,
the racing hearts, the rage just some of the complains.
Someone who has been there before,
gives us all hope to be sure.
This Disease we all share,
including my wide open stare.

From many, many miles away,
“I come from the land Down Under” I say.
The compassion and support cannot be measured,
the understanding and caring truly is treasured.
In closing I loudly must state
“It’s great having you all as a mate.”

Debbie
A.K.A. Robboford
Sydney
Australia

[Robboford]

in reply to: How do you cope with being on the knife edge? #1176949

Hi all,
Love the words on your T-Shirt Kimberly. I hope you don’t mind, but I have typed them up and taped it to the front of my Desk. A great talking point so far!
Cheers
Debbie

[Robboford]

in reply to: Hyper Hormone Secretions? anyone know? #1176868

Hi Karen,
I was watching this show on TV last night and straight away thought of you. Don’t know if it will help or maybe you have already seen it – It is a British show called Food Hospital and basically investigates different food types helping people with varying symptoms of their medical conditions. The episode last night had a lady currently experiencing menopause and having debilitating hot flushes multiple times a day. She was too embarrassed to go out with her “red face” and being seen sweating profusely and her quality and and outlook on life being severely affected. The Doctors suggest a diet that she follows for 5 weeks excluding some foods and adding other types that they think may assist them. It wasn’t anything new age or over the top and every week they feature different patients with a wide range of problems and for some the diet changes are amazing for others their symptoms and side effects are greatly reduced. The lady who was featured in this episode had an amazing outcome. Her hot flushes were greatly reduced, her sweating substantially reduced and she seemed like a totally different person. Again, not sure if it will help you but anything maybe worth a try. Here is the link (if I am allowed to post it) http://foodhospital.channel4.com/episodes/series-1/ Hopefully you may get some hints or tips that may help you. I have crossed my fingers for you. Once again I am not saying it is a miracle cure but hopefully will help you in dealing with some of your symptoms. I know it will be something I will be keeping to refer to when it’s my turn to hit menopause in the next 4 – 5 years (not looking forward to that journey – LOL).
Cheers, hugs and kisses
Debbie
(A.K.A. Robboford)
Oops …. Episode 6 of Series 1 is the episode that features the above

[Robboford]

in reply to: 46 Male, Runner and cyclist, with Graves #1170828

Hi StephenE,
Great news, congratulations and here’s hoping you continue to stay in remission. Thank you for sharing your journey and hopefully it will help others who find themselves on this Graves’ journey we are, or have experienced and for some of us who are are still navigating. Stay well.
Cheers
Debbie

[Robboford]

in reply to: Help, desperately please if anyone can.. #1176477

Hi rae5,
Fingers crossed that it will work or at least help you. One of the older guys at work here has had diarrhoea constantly for the last 6 months and had been to Doctors and specialists etc but to no avail. When I suggested the B1 tablets and told him to check with his GP before taking them – the Doctor was very sceptical but told him to try them. Surprise, surprise they worked and the GP is now using them for other patients, so it definitely pays to network. I saw my Opthalmologist yesterday and got some pretty crazy lab results, so my eye problems have been put on hold and it’s back to the Endo to try and manage my levels. Luckily I have an appointment with my Endo next Tuesday and am going for my labs today otherwise the Opthalmologist would have sent me straight to ER. My TSH has dropped to .05 (0.40 – 3.50) (at my last labs it had got as high as .066 still not great but at least it was detectable – I had almost 12 months of TSH not being detected) but it’s my autoantibodies they are more concerned about: Thyroid Peroxidase Ab 123 (0 -35) which whilst high hasn’t really increased too much but the Thyroglobulin 5388 (<30) has skyrocketed and is what is of most concern. The Lab where I had the tests done have made a note that they re-ran the tests just to make sure of the result because it was so high. So at the moment I am waiting to see Endo and see what his input is and whilst the Opthalmologist was really concerned there is nothing I can do about it at the moment and if I stress myself out about it - who knows what that may do to today's Labs. Patience and waiting sucks but with 2 arms and 2 legs and breathing on my own I am still better off than a lot of others. I'll let you know how I go at Endo's. Stay well and good luck.
Cheers
Deb

[Robboford]

in reply to: Help, desperately please if anyone can.. #1176475

Hi rae5,
Sorry to read you were back to feeling hyper and all the crap effects that goes with it. Not sure if this will help you or not, but it works for me and I have been taking them continuously for the whole duration of my Graves’ journey. I too suffered with diarrhoea and I was given Vitamin b1 tablets. I take 3 a day and the brand I take is “Betamin” that cost $6.99 for a bottle of 100 tablets from Priceline. I still have the odd rare attack, but day to day they really work for me. Hopefully it may help you. Keep on fighting.
Cheers, hugs and kisses,
Deb

[Robboford]

in reply to: I’m ready to take the bridge! #1176725

Hi Karen,
Hang in there. I am sending you cyber hugs and kisses from down under and my heartfelt best wishes. The last 6 weeks of my Graves’ journey has been the worst of this flamin’ good for nothing disease so far but please know that I have drawn great strength and inspiration from your posts. I am sure that I am not alone and there are many other Forum Members out there who would agree. You have been through so much so far (and triumphed – you Warrior you) and I truly believe that this time for you is one of those speed bumps (not sure if you call them that in the States) in life that we have all encountered and in most of our cases – will conquer or are in the process of conquering. Battle on!
Love hugs and kisses,
Debbie

[Robboford]

in reply to: Pretibial Myxedema questions #1176595

Hi kingzito,
I am another of those “lucky ones”. I control mine with Antroquoril (I think) cream. I will check the name over the weekend and get back to you. Although, my GP is not happy with my continued use, my Endo is happy for me to use it if it is helping. Not many Doctors are familiar with it, I actually had to suggest it to my medical team and then it was Endo who actually confirmed it. I am a bit of a freak show when I go to my Endo or Opthalmologist they all ask if it is ok if their colleagues have a look at the rash so they can it in real life. I will be back in touch over the weekend.
Cheers
Debbie (A.K.A. Robboford)

[Robboford]

in reply to: Help, desperately please if anyone can.. #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

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