Glimpses into living life with an autoimmune disease (Hashimoto's Thyroiditis), postural orthostatic tachycardia syndrome (POTS), postural hypotension and chronic fatigue syndrome (CFS/ME)...ideas, experiences, the struggles, and the successes!

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I love finding new worlds through writing and reading. I am excited by creating new flavours and tastes in the kitchen. I am fascinated by nutrition and healthy lifestyle choices. I adore my my dog, family and friends.

Wednesday 9 January 2013

Glimpse into advice, love and support

I have received some great advice and support in reaction to setting up this blog. I thought I'd share some of the thoughts people have shared. I have only used comments people made public on facebook or this blog; I have not posted privately sent messages.

  • I don't have the food intolerances but absolutely feel your pain with Hashimoto's. It took multiple times of months off work and getting to know how my body coped with it to get my head around it all. I hope writing your blog helps you as much as others x

  • Seeing an endocrinologist who had a better understanding of the ideal blood levels (lower end of normal) was great. Apparently people can be walking around 10 times more out of range than me but I'd end up bed ridden not that far out...took my GP a while to accept it I think but now it's fine. My dose took a lot of tweaking and is a bit odd but I got there. Do your own reading and trust your instincts..even when you're sleeping 20 hours a day lol
  • The first bout I was off for 3 months, then again for 2 so I had drained all my sick leave and ended up using some long service leave. Miserable!! I was always thankful I didn't have the weight gain or a hideous goitre lol. The fatigue is crazy and having to ask for so much help from others was really difficult when you are so used to being independent. (My son) was in early primary school at the time. It is a massive mental adjustment when you can't see the end it sight. I was forever grateful to those around me for their love and help - embrace what ever is offered!
  • Great idea! I think it will be therapeutic for you and also great for the people around you to have a better understanding of what you are going through.

  • Geez, that's full-on. when were you diagnosed, and are you happy with your endocrinologist?
  • I have hashimotos! It was diagnosed in 2002 after over 12 months of massive weight gain and being told "you're a new mum, it is normal to be tired". At that stage I was needing over 14 hours sleep a day! If only they had just done a blood test earlier! It has taken forever to lose the weight and even after all these years, my levels are still all over the place. I'm currently on 200mcg oroxine per day. It is very frustrating! Good on you for setting up a blog!
  • Check out your Super, you may qualify for income protection if you are running out of leave. QSuper pays 75% of your wage for up to two years.
  • After reading your blog, I feel so greatful for my health & shouldn't take it for granted. I can't believe how you've been dealt a lousy card & hope that your levels stabilize asap & stay that way. Take care xx
  • Geez sounds like it is absolutely knocking you for 6. You should definitely get onto an endo though ASAP... will be probably a 3mth wait to get in but it is their area of expertise. I have one or two names that are excellent. Even though there are great GP's out there, it might be a bit complex for them to totally understand but more likely they may not know the full spectrum of effects, treatments and interactions (e.g. with pituatary). Do it!!
  • I basically went through 4 GP's, a neuro, an endo and then another neuro to get a diagnosis that made some sense and could be tested. Something totally different but you learn to challenge GP's, learn about the systems in the body and learn about how symptoms can lead you down a particular path... And sometimes you just need to be sitting in front of the right professional. Good luck, keep at it and keep positive!
  • Although its early days, I would really encourage you to see an Endocrinologist...given you have other health issues, are so young and are pre-babies. After my second blow out I asked my GP for a referral even though i was afraid of offending her! I only had to see the Endo once but would have to have gone back if I had more babies. They also screened me for a whole range of auto immune diseases..once you have one you have a greater chance of others. Maybe you could just ask your GP what they think and when the timing seems right
  • I feel very lucky as my Hashi's never ran my health off into a ditch. Hang in there! It can only improve right!! Xox

  • This blog is a brilliant idea, you will have so much support and information from fellow sufferers , a very positive move . Well done you ....xxxx
  • Reading your blog... You are an amazing and strong person and I hope the new year will be much much better for you xo

  • Hey, great blog... though I'm so sorry to hear about the awful things you've been going through. I was diagnosed as a celiac about 10 years ago and food intolerances are no fun. I can't even imagine how difficult it must be dealing with everything. Stay strong and if you ever feel like a chat or whatever, shoot me a message x

  • Sounds like a great idea to blog about and very inspirational for others like myself, who would have no idea about such a disease. Best wishes for good health, a great blog and for the treatment to work!

  • Well written way of describing Hashimoto's ... I was diagnosed with Hashimoto's in 2006 and it was hell. Slowly killed my thyroid so now it doesn't do anything at all anymore but at least it's no longer a roller coaster. Hopefully now you know it's Hashimoto's they can control it for you so the roller coaster isn't as horrid! Take care!!
  • Crossing fingers toes and endocrines and enzymes for you to get well in the new year xxxx
  • Hope the new year brings improvements for you. Keep fighting the good fight. Happy New Year and goodnight x
  • Hang in there...amazing things can happen as your body heals


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