[Robboford]

in reply to: Help, desperately please if anyone can.. #1176453

Hi Rae5,
I have only now got internet and email access back after the Christmas/New Year break. I am also from oz (Nth Western Sydney) and would have made contact earlier if I could of. Welcome to this forum, they are all a great bunch. The information, support and understanding I have gained from here is awesome – absolutely priceless. They have kept me sane and have helped me with info and information that I hadn’t received from all the medical staff I have been involved with. A brief outline of my journey so far: (you will find heaps more of my posts if you search my username) I went to my GP in early September ’10 with swollen ankles. She immediately told me to go straight to Emergency at Hospital. Got admitted to Hospital and was diagnosed with Graves’ Disease and Heart Failure. Was in Hospital 2 weeks, was discharged and then took 3 months to recover enough to go back to work. Continued with meds, blood tests , endo visits etc. TSH didn’t register for approx 12 months and I am on a block and replace regime as my levels just could not be stabilized. I am currently waiting for surgery to have my Thyroid removed and have seen a Surgeon, but he will not perform surgery till the Cardiologist says all is OK. (I am still on Blood Thinners, Beta Blockers etc). Coupled with that I also have TED and my Opthalmologist has recommended Radiation so still deciding on course of action for that. I see Endo in 3 weeks, Opthalmologist in 2 weeks and Cardiologist in 4 weeks, so hopefully I will soon be on the next stage of this journey. I sympathise with your “feeling hot” issue, but believe me after going though winter and feeling constantly bone chillingly cold (no amount of layering clothes or sitting in front of fires/heaters etc would make the cold go away). At least in summer I can go for a swim or have a shower or sit in front of fan or air conditioning. So the better of the 2 evils I found was feeling hot all the time. I also am one of the “special” people to have pretibial myxedema (???spelling). This Graves’ journey has been a crap ride so far but one of the benefits has been becoming a part of this wonderful forum. Hang in there, and try and stay positive (it can be hard sometimes, I have the odd feeling down and fed up with it all day now and then – we all have them), but this wonderful forum is only a few clicks away. Also, if I can offer any advice or help please PM me.
Cheers, hugs and kisses
Debbie (A.K.A. Robboford)

[Robboford]

in reply to: Endo appointment with a new doctor, WOW!!! #1175154

Hi Khadijah,
Just wanted to chime in with my thoughts. I have been on my Graves’ journey in excess of 14 months now. I have also got heart complications and have been diagnosed with TED (also diagnosed with pretibial myxedema in addition to TED). Surgery seems to be the preferred option here in Australia, although RAI Treatment is also performed. I have chosen the surgery option because hopefully it will stop the TED progressing, from all my research there is more of a chance of the TED progressing with RAI than there is with Surgery. Luckily I have been referred to a leading Head and Neck Surgeon who I see this coming Thursday and although my levels are still not stable for surgery, the Goitre is growing (3cm approx in the last 3 months) and the TED is getting worse, hopefully he will accept the higher risk now involved with operating on me. (My Endo also picked up a lot more vascularity (Spelling???) and a bruit in my Thyroid). Everyone’s choices or reasons are different though, so my best advice is to research as much as you can and make an informed decision in conjunction with your medical team. Good luck on your journey, some days are good, some not so good but always I have found reassurance and support from fellow Forum Members.
Cheers
Debbie

[Robboford]

in reply to: I am so COLD all the time! #1175160

Hi Shirley,
I also suffer from feeling the cold. I have never felt anything like it. The cold sort of comes from inside and goes right through my bones very hard to describe. No matter how many layers I have on, or even sitting 12 inches away from the heater would warm me up. I am also still hyper. We are now coming into summer over here and even on days of 32+ (think it’s about 94 – 100 + for you guys) I still have to wear my thermal socks and walk around with a jacket on whilst everyone is complaining about how warm it is. Maybe it is another symptom more to do with TED (only guessing on that one but it doesn’t seem to affect everyone, only a select few). I have also been diagnosed with pretibial myxedema (once again, one of only a select few). I am over this crazy roller coaster ride and just want it to stop. But anyhow, life goes on and hopefully your recent surgery has bought you some relief, try and stay warm and well.
Cheers, hugs and kisses
Debbie

[Robboford]

in reply to: Red stinging legs? #1175063

Hi ewmb,
I was diagnosed with pretibial myxdema with Graves’ 14 months ago. I currently use a Steroid Cream every 3rd or 4th day but some of my Doctors are not happy with my continued use. I have scaled down from using it daily and now it is Spring almost Summer down here, the warmer weather is aggravating it and I am using every 2nd or 3rd day. If I try not to use it, the onset of the red rash announces itself by a “tingling” sensation 1st and if I don’t reapply the cream within 6 – 8 hours it is back to it’s red angry worst. For me it looks like I am wearing red socks (I have been asked by another Forum member to post some pictures, but unfortunately I have been unable to do so because the effects (when they appear if I have not applied the cream)) are so maddening – sore, hot, itchy, which then progresses to itchy welts that drive me crazy. I just have to scratch which then leads to broken skin and bleeding. At my last Endo visit he explained to me that both the Thyroid Eye Disease (I have been recently diagnosed) and the pretibial myxdema are related to each other and it is like my body is rejecting my own body parts. (Similar to a patient receiving an organ transplant and the body rejecting it) (eyes and skin). In my case Tsh has been a real issue and was only just detected after 11 months (still very low) and has dropped in the past 3 months. I am off to see a Surgeon in 2 weeks to arrange my Thyroid Removal (will post on this later), which we are hoping will help both the pretibial myxdema and Eye issues. Pretibial myxdema is very rare here in Australia and I am a bit of a side show act when I go to my appointments as a lot of medical professionals are interested in seeing it in real life even when it is not at it’s worst. My Trab levels are also extremely high which is contributing to the eye and skin issues. Good luck, hopefully you can find some relief in which case I would like to hear about your remedy or any relief you might get.
Cheers
Debbie

[Robboford]

in reply to: Joint/Muscle Pain – How common? #1174984

Hi Alyianna,
Thanks for reading my post. I would be interested to hear how the Tonic Water goes for you, hopefully it will offer some relief.
Cheers
Debbie

[Robboford]

in reply to: Joint/Muscle Pain – How common? #1174982

Hi www12,
Have you tried Tonic Water for relief? If you have read any of my posts you will know that I have been on my Graves’ journey for over 14 months. I will update my latest issues in a new posting, but in the meantime a brief outline: I am currently being medicated on a block and replace regime, just cannot get my levels right. Tsh finally detected 3 months ago, but has since dropped again. I felt I had been swinging from hyper to hypo (my Endo sort of agreed based on my comments and the fact I keep a daily diary of my issues and symptoms etc.), but at my last visit (10 days ago) I am still Hyper. For the whole of my journey I have had muscle cramps from stomach to arms and legs. 2 months ago I thought I had torn my Achilles Tendon and could hardly walk until 2 days later, I had the same in my right leg so had both legs that I could only “shuffle” on and the pain was terrible. I gained a tip from here about Tonic Water (Thank you gatorgirly (I think), Shirley and others) and although to me the taste was disgusting, I persisted and have 1/2 a glass a day (now I mix it with Low Cal Raspberry Cordial which makes it a bit more bearable) and it helped substantially. I don’t know if it was a coincidence or not but I am still having 1/2 a glass daily and the cramps and aches are not as severe. I still experience the aches and still have the tingling and my arms and legs (“falling asleep or going numb”), but it is a lot more bearable. Good luck on your journey and stay well.
Cheers
Debbie

[Robboford]

in reply to: Please Read – Forum Coverage Through Nov. 1st #1174788

Hi Kimberly,
To yourself, fellow organisers, presenters, forum members and conference attendees, best wishes for a successful event. I will be thinking of you all and wishing I was well enough and allowed to fly to attend. Stay well all.
Cheers, hugs and kisses,
Debbie

[Robboford]

in reply to: New member of the TED Club #1174596

Hi All,
Saw my Opthalmologist yesterday who reviewed my scan results. I didn’t realise the “bulging” was as severe as shown on the CT Scans, left eye protrudes approx 27mm and right not far behind at 23mm. Took more measurements and requested labs so that we can establish the rate the TED is progressing. I go back to him first week of February and he will arrange the Radiation treatments from then. After discussing Radiation or oral Steroids both he and I agreed on the Radiation. He was quite surprised by my Trab result a massive 25, although I am not sure of the normal range. I will check with my Endo at the end of this month as I have been monitoring my TSH, FT3 and FT4 more than Trab and Tpo levels, although my Endo has been testing all these. Till next time …… Stay well
Cheers, hugs and kisses
Debbie

[Robboford]

in reply to: 6 weeks pregnant low TSH #1174633

Hi S…
Just wanted to chime in with my congratulations. Best wishes for the next exciting life journey. Wishing you wellness and happiness.
Cheers hugs and kisses
Debbie

[Robboford]

in reply to: New member of the TED Club #1174595

Hi Ski,
Thanks for your informative reply. Greatly appreciated. I will update again after my next Opthalmologist appointment.
Cheers
Debbie

[Robboford]

in reply to: Graves / Pregnancy update #1174256

Always good to read a “good news” story. Best wishes on your ivf journey, my thoughts and prayers are with you. 3 cheers for your hubby “hip hip hooray, hip hip hooray, hip hip hooray” cheers for you also for rising above the struggles and issues associated with Graves and continuing on with your dreams.
Cheers, hugs and kisses
Debbie

[Robboford]

in reply to: UPPER EYELID SURGERY TODAY #1174196

Hi Shirley,
Sorry to hear about the pain and issues you have been dealing with post surgery. Prayers and good thoughts being sent your way from Down Under. As the Warrior you have already proved to be, I am sure you will battle on and update us with your progress and hopefully a positive outcome from surgery, or at least an end to the nightly taping. I saw an Opthalmologist last week and have been officially diagnosed with TED, CT Orbit scans this week and then a 3 week wait to see the Opthalmologist again. All sounds a bit scary though, he is already talking about Radiotherapy but will have to wait for scan results, just another detaour on this Grave’s journey of mine.
Cheers, hugs and kisses
Debbie

[Robboford]

in reply to: * Labs Update (Round 3 :)p ) * #1174330

Hi Naturenut,
Welcome to the Forum. Well done on wanting to be informed about Graves. Having a supportive and informed partner can make all the difference and really helps on those “feeling down or blue” days. It is very much an up and down journey and while my journey has now gone on for over a year, the support, information and reassurance I have gained from this Forum and it’s members has been priceless. I was diagnosed with heart failure (AF) in conjunction with Graves and I have only just stopped taking Inderal/Deralin in the last week, (not sure what it is called in the US) (I tapered from 4 tablets daily down to 2, down to 1 and then none over 4 weeks) and I am still taking Pradaxa (Warfarin and me just didn’t get along) as a Blood Thinner. It is very important that your husband does not over exercise at this stage. Having Graves causes our muscles to deteriorate and although he may feel a need to build them back up, you don’t want him to cause any further damage to his heart, please make sure he follows Doctor’s orders on this. My initial weight loss was masked by an excess of fluid caused by the heart problems, I lost 18kgs ( approx 40lbs) of fluid whilst in Hospital and it is only now that I am noticing a slight weight gain. Stay strong and please keep us updated on your husband’s journey, there are good days and bad days ahead, but this Forum is only a click away.
Cheers, hugs and kisses
Debbie

[Robboford]

in reply to: * Labs Update (Round 3 :)p ) * #1174329

Hi Caro,
Congratulations on your Liver numbers. Can be really scary being elevated, took mine 11 months to get out of the danger level and back to almost normal, they still closely monitor it though. Hopefully your next set of labs will show a raised WBC. How are you feeling being officially “Hypo”? Hopefully things will return to normal so you can continue on with life in general. Please keep us updated.
Cheers, hugs and kisses
Debbie

[Robboford]

in reply to: MY TERRIBLE TIME WITH TED-a review #1174102

Hi Shirley,
Just wanted to let you know, I will be thinking of you on Wednesday. You have certainly been on one hell of a roller coaster ride. Cudos to you for your fighting spirit thus far, your posts have been an amazing inspiration to me on my journey. Hang in there and I look forward to your upcoming posts. Prayers and big hugs and kisses from Down Under.
Debbie

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