[Robboford]

in reply to: labs – frustrated and stressed #1173798

Hi Stephanie,
Wishing you every success on your next “journey”. Sending kind thoughts and a special mention in my prayers for you from Down Under. Stay well and please keep us updated. We will all be cheering you on:D:D
Cheers, hugs and kisses
Debbie

[Robboford]

in reply to: ~~ HypoT Symptoms ~~ #1173453

Hi Caro,
My Endo relies more on labs than any thing else. He always orders tests for my Liver, Clacium levels, White Blood Cell Count together with Free T3, T4, TSH, TRAb Thyroglobulin Ab and Thyroid peroxidise Ab. I was in severe Thyrotoxicosis when I was first diagnosed and one of the worst cases (in relation to my levels) that he or any of the other Medical professionals involved in my treatment had ever seen or treated. In my case the intolerance to both hot and cold has been with me the whole way so nothing had really changed. The outside weather obviously has something to do with it though. The changes to my hair (thinning and slight hair loss together with thinning of my eyebrows) has been happening since I was diagnosed and no real pattern with weight loss or weight gain has really been established since beginning treatment.
Cheers
Debbie

[Robboford]

in reply to: Latest Endo Visit #1173765

Hi Caro,
Yes, you are correct in me being on a “Block and Replace” regime. I have only been taking the thyroxine for the last 6 weeks due to the dangerously low T4. I was diagnosed (and hospitalised in ICU) back in September last year, so 11 months so far. It is only now though that my eyes are giving me more trouble, Just another “Pit Stop” along my Graves journey.
Cheers
Debbie.
(AKA Robboford)
PS I replied to one of your posts about the cold intolerance and once again, I would rather the heat intolerance than the cold.

[Robboford]

in reply to: ~~ HypoT Symptoms ~~ #1173451

Hi Caro,
Sorry to hear about your interrupted sleep patterns. Although I am still not officially Hypo, I have suffered from heat and cold intolerance right from day one of my journey (My Endo told me that these reactions weren’t really a good indication of either Hyper or Hypo and that weight changes were a better indication). The reaction to heat was a lot easier to deal with. I would not wish the cold intolerance on any one. It is currently winter here in Australia at the moment and although it doesn’t snow here, in the hills area where I live we do have a few cold mornings (hose freezes, ice on the windscreen etc). I have never ever felt the cold like this winter. As I type this at work, it is currently 10.30am and I am freezing, rugged up in thermal socks, gloves, scarf and hat and I can feel the cold right down to my bones and have the constant feeling of being cold for the whole day. I am surprised by how much the feeling of being cold stays with me for the whole day. My husband has started calling me “iceblock” – no matter how many jumpers or blankets or how close I sit to the heater, my hands and feet just don’t warm up (I have even been woken through the night because my nose was cold). I go to bed and he touches my feet and he can’t believe how cold I am. At least in the warmer weather, I can have a shower or turn the fan or air conditioner on to cool down, never thought I would say it – but bring on summer.
Take care
Cheers, hugs and kisses
Debbie

[Robboford]

in reply to: Positive attitude #1173244

Hi All,
Just goes to show what a wonderful, insightful and caring bunch we have on this Forum. I would just like to chime in – I am almost the most positive person I know – even in my darkest, deepest Graves quagmire, people ask me how I am and my usual response is “Better than most, 2 arms, 2 legs and breathing on my own”, but sometimes I have needed the reassurance from the wonderful members of this Forum to bring me back to the real world. I have even found I have been second guessing myself as to whether I am actually feeling a sympton or maybe am I imagining it. Whilst I am a true believer in the power of positive thinking, I also believe that some of the more challenging days or moments can test even the most positive of us. I don’t push my Graves onto people but if people ask questions I try and answer them. Most people I have come across are totally uninformed about Thyroid issues (as I was) and it has become somewhat of a crusade to spread the word and if possible, when I am more healthy, I will be out there shouting from the highest mountain and hopefully contributing towards promoting a better understanding and awareness of Thyroid and/or auto-immune disorders. So thank you to all you fellow Graves Warriors and especially Kimberley, Bobbi and other Moderators, your efforts and prayers are greatfully acknowledged. Soldier on all!
Cheers, hugs and kisses
Debbie

[Robboford]

in reply to: What happens next? #1172881

My rash is limited (so far anyhow) to one shin. It looks like I am wearing a red sock – starts just below my knee right down to the top of my foot. I would be happy to send you photos, but I am not sure if they will turn out. For you to get the whole picture, I would have to not use the cream for a day and wait for it to flare up, take the photos and then lather on the cream. I will give it a try in the next couple of days. Not sure how I would post the photos though – PM maybe?
Cheers
Debbie

[Robboford]

in reply to: Riding the roller coaster #1172938

Hi all,
Thanks for being part of my Army, all of us fighting the good fight together. I had thought about discussing an eye specialist with my Endo. Would he be the best one to recommend someone who specialises in Graves Eye Disease or should I do my own research or do I combine both options. My Endo has been great and I have a great relationship with him, so I would be confident in his recommendations, but I am also open to finding my own. What do you think?
I have been keeping a Log since I was discharged from hospital and my Endo has found it be very helpful. I just add random entries throughout the day; within an hour of waking I have written how I am feeling, my mood and throughout the day I just jot down entries; ie: eyes sore and puffy, legs swollen, rash red and itchy, feeling down but Forum perked me up again (that one is in there a lot – thanks ALL!), I also write down a summary of what I ate through the day and just a general entry on facial features ie: face pale and puffy, or colour in my cheeks today and sometimes at the end of day I will write down – all good today. It is quite interesting to go back over and read and my Endo finds it invaluable. Who knows I may even publish it 1 day if it will help someone else out.
Cheers,
Debbie

[Robboford]

in reply to: What happens next? #1172879

Hi Mary,
Thanks for reading my posts. The cream is the only thing that has helped me. My Endo is fine with me using it but a couple of his colleagues are concerned at my long term use. Personally for me, I am not going win any “lovely legs” competitions anyhow so the skin thininng isn’t an issue I worry about. Due to the severity of my rash, if I do not apply the cream daily I can feel the redness and swelling coming on. Within 2 hours of feeling the “tingle”, the lumps (I would describe these more as welts) appear, I start scratching or should I say gouging, and then end up with broken skin and bleeding. If I had to choose between using the cream or putting up with the itch; the cream wins hands down. I haven’t heard about any other successful remedies or treatments I can use. What have you, or others used? It does seem to be a very rare side effect/symptom here in Australia and sometimes I feel like a sideshow act as a lot of my Endo’s colleagues have seen it in books or encountered it during their studies but have never actually seen it in real life. I have tried to wean myself off it (using every second or third day), but my body just won’t co-operate.
Cheers, hugs and kisses
Debbie

[Robboford]

in reply to: Hours until surgery #1173008

Sending good thoughts, prayers and best wishes your way! Hang in there and stay strong, the light at the end of the tunnel is shining brightly and getting closer to you and your son.
Cheers, hugs and kisses
Debbie

[Robboford]

in reply to: What happens next? #1172874

Hi GLo,
Thought I would outline my Grave’s journey and hopefully give you a bit more insight. When I was first diagnosed back in early September, 11, I thought my road to recovery would be quite quick although my Endo did warn me that it may be a long journey. (“We need to bring your levels back to normal and then we will remove your thyroid and you will be on 1 pill a day for life, you may get sick of taking tablets till then but that is our plan for you” my Endo’s words to me). I thought not me, I’ll kick this and be back to normal in no time. Looking back now, wow, how naive was I. Graves is such an individual journey and a time limit just cannot be set at the outset. (My medication count is up to 23 pills a day now, plus cortisone/steroid cream for pretibial myxedema and at my latest count, I have consumed in excess of 6,500 pills since being diagnosed). I don’t think your Endo is being “vague”, I think they are trying to be cautious and not set time limits. Well done to you for the changes in your lab results in 3 weeks, and a change in TSH will happen by August (for your next labs), hopefully a speedy recovery is on the cards for you. I should add that I also have irregular heartbeat and eye issues with my Graves condition.
Keep fighting the good fight,
Cheers, hugs and kisses
Debbie

[Robboford]

in reply to: My Thyroidectomy #1172640

Congratulations. Best wishes for a speedy recovery and thank you for sharing your experience.
Cheers, hugs and kisses
Debbie

[Robboford]

in reply to: Hello … I’m new #1172587

Hi Caro,
My name is Debbie, welcome to the Forum. I have found all the participants on this Forum to be very helpful, understanding and knowledgeable. It certainly helps being able to talk about your concerns with others who have travelled or are still travelling the same path. If you have read any of my posts you will see that my Grave’s journey is nearing 10 months. Although my Doctors etc believe that I have had Grave’s symptons for a lot of years. You were asking others to give you an idea of length of time before you feel better. We are all individuals and our definitions of feeling well may vary. Some days I feel almost normal, but others I feel terrible. I have still got a number of months before my levels get close to normal to enable complete removal of my Thyroid. I seem to be 1 of the “Gravers” that have had nearly all the syptoms or side effects that fellow sufferers may or may not get. Hang in there – Power is knowledge and patience is powerful – you will get better just accept that evryone is different and have different journeys to travel. Please don’t believe everything that you may read or that others may tell you – this Forum has been great in giving me information and advice based on their own experience and it has enabled me pass on some of the same advice and insight that was given to me. I really believe now (it has taken a long while to accept and come to this conclusion) that I have been sent on this journey for a reason, and that one day I will be able to offer the same advice and reassurance to a fellow Graves sufferer.
Cheers, hugs and kisses
Debbie

[Robboford]

in reply to: Successful Thyroidectomy! #1172490

Hi Alexis,
Thanks for the update. Best wishes for a speedy recovery.
Cheers, smiles and hugs.
Debbie

[Robboford]

in reply to: Just Diagnosed!!! And Scared! #1172470

Hi Lil Red,
Welcome to the forum. I have drawn great information, inspiration and support from participants here. if you have read any of my earlier posts you will discover that my Journey with Graves has now entered it’s 9th month. When first diagnosed I was originally told it would be a 12 – 18 month journey. I thought that was excessive and I would be back to “normal” well before that. Unfortunately it hasn’t been quite that simple. I have found that knowledge is power (if you are armed with the correct knowledge – there is alot of myths out there and unfortunately it can be hard to weed out fact from fiction). The Forum members have been great in sharing their experiences and insights into this terrible Disease and I have found many facts based on members own experiences. The Moderators/Facilitators are also wonderful and very helpful. Please do not hesitate in asking questions, someone will always have an insight or experience to share with you. Even on those “bad” or “down” days, we all have them so please don’t feel you are alone. Hang in there and stay strong.
Sending you a cyber hug from Sydney, Australia
Regards
Debbie (Robboford)

[Robboford]

in reply to: My decision #1172320

Hi Gigi,
Although my partner and I have been together for 30 years, we have not been blessed with any children so I am probably not the best person to comment, but from my point of view the decision you have made must have been heart wrenching. If I was in your position, I would be thankful with the beautiful healthy daughter you have been blessed with, and would make the same choices you have made. As I have been told by my Endo, the majority of “Gravers” have been affected due to some genetic connection. (I have been wracking my brain to find a link – unfortunately my mother died when I was 4 and my father when I was 12 so I don’t have any “go to” people I can ask. The only link I believe, is that my Dad’s mother (my grandmother) lived to 79 but was Insulin dependant, one of his sister’s (my auntie) died at 39 (was Insulin dependant) due to complications of Diabetes and another auntie is still alive today in her 60’s and is also Insulin dependant). Unfortunately back in the 70’s a lot of people died as a result of a) old age or b) complications of an illness they were affected with. Today we are all a lot more aware and don’t accept things as easily as back then, therefore these relatives could have died as a result of any number of illnesses or complications). If I had passed on Graves to any child or children we may have had, I don’t know if I could cope with that after knowing the upheaval and the suffering caused by Graves. In saying that though, I believe I am on this journey for a reason and once I do do get well, I will be one of the loudest voices out there in an effort to support other sufferers or to share my experience in the hope that others may find a benefit or a shoulder to cry/laugh on. All in all, I think that we all have a right to the choices we may make (or are forced to make) and even if you decide to have more children that is a very brave and personal decision only you can make. Stay strong and well and best wishes for the future.
Cheers, hugs and kisses
Debbie

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