Glimpse into Saturday December 29th 2012

My baby brother (a baby brother who is a lot bigger than me!) who has been visiting from France goes back tonight after just over 2 weeks here in Brisbane for Christmas. :-( We are having our favourite BBQ spareribs for dinner. :-)
As you may notice, I have changed the blog's layout slightly today.
Glimpsing Gembles will be the page that has all posts; random updates, Hashimoto's information, food intolerance and fructose malabsorption info etc. Then posts will be allocated to a specific page as well.
I may not blog for a day or two...brain fog is setting in big time at the moment.
Have a good night!

Glimpse into supporting your unwell loved ones

When you are sick for a long time, you are subject to such a wide range of reactions from people.

Over the years, I have had countless hours of sick leave, including having to leave shifts early. My fellow employees and employers have always been amazing though. They are so understanding and helpful, even when I didn't know what was making me unwell; I guess that is the upside of working in the health profession.

People who say "it is ok, you'll be right", think they are being supportive, but when you feel like death warmed up, have missed weeks of work and haven't done a fun, social outing for months, it is beyond frustrating and blood boiling to hear! Whether this is based on their experience of thyroid conditions through friends or family (possibly not even Hashimoto's), or they make this observation with no knowledge or experience whatsoever of what you are going through, or even if they themselves have Hashimoto's, it can be so upsetting. If they are one of the lucky ones who, although they may have suffered from the effects of Hashimoto's, now take medication and have had no issues getting the correct dose, then they don't understand what it is like to feel the frustration and be on the roller coaster of trying to find treatment. I in no way resent them for this; I am so happy for them that they don't feel this frustration; that they have been so lucky to get on top of it, but they definitely aren't helping you with their comments!

You also get people who are amazing; who help you with all the little things that seem like nothing when you're well, but are massive feats of endurance when you are unwell. Someone who empties the dishwasher for you is an angel in disguise. A visitor who drops in, makes you a cuppa and sits on the couch with you for a chat and then leaves before you need to say you need to sleep is an unbelievable contribution to your sanity! Even a text to see how are you, or an offer to pick you up and take you to their couch for a change of scenery is unforgettable. The little things are definitely the most important. Support your unwell loved one by thinking about the things they need so they don't have to ask.

I have found that the loss of independence impacts on your life so much. I can't drive at the moment because I have been too dizzy and lethargic. This means that I spend so much time indoors, often alone. It means things like getting groceries and seeing other people are hard (these type of things are also affected in that I struggle to actually do groceries etc).
It also means that you are always asking for help, which can be bad for your self esteem, and your happiness. I have had several issues with people wanting me to tell them how I want them to help and what I want them to do. That makes you feel like they don't really want to help because if they had no issue then surely they would just skip their dinner out to sit with you while you're in pain, or they would just go out and get you food if they can see that the fridge is empty. So then you say don't worry about it, and then end up lonely and hungry!! So the key is, please remember the little things when you know someone who is unwell!

Glimpse into support

I have had such an amazing response already from starting this blog!! So much inspiration, advice, information and support already! Thank you! I hope we can all help each other :-)

Glimpse into your loved one's Hashimoto's disease

Hello there,

My name is Hashimoto's disease, and your loved one is my host. She does me well. When I attack her thyroid and she produces too much hormone, I feed on her. I drain the energy from her, I make her feel anxious and jittery, and just for thrills, I make her dizzy and I upset her stomach. I make her muscles ache all over, I make it hard for her to move. I make her eyes blurry, and I stop her from having any fun with friends. And then when she runs out of hormone, well I don't like that, so I make her feel flat, and tired, and sad. She struggles to get out of bed, and if she manages that, I make her feel so weak and nauseous that she can't go to work. I enjoy what I do; one week I attack, another I rest; it is fun to watch her on the roller coaster.

You know that time she was crying in pain and sadness, and you left her to go to your dinner with friends thinking "she can manage, she does it all the time"? Well thanks buddy! You weakened her strength against me and helped me get a stronger foothold on her; it was just what I needed!

Remember that time she yelled at you just because your hand got in the way when she was trying to pick up those books that had fallen over? Well that wasn't her, no you fool, that was me! I was churning up her head so it was so thick and muddy it was like a mouldy fish pond. It was so hard for her to concentrate on picking up the books, that your hand just made her crazy!

And all those times she can't decide something, and just wants you to take control? Yep, me again! Her body is so tired and achey, her heart is thumping, her mind so foggy and dizzy, and her limbs so shaky, that she can't make decisions! How lame do you think I am?! She would have to be superhuman to fight through all that and give you the decisions you want!

So next time, you think it is her being angry at you and walking twenty steps behind you, please think of me! Give me the credit! I am the one who is making it hard for her to keep up with you! I am the one who is making it impossible for her to smile at you! I am the one that makes her say no to all those social occasions, and yet her friends continue to fall for it and end their friendships with her because she never comes out! I am fed up with not getting the appreciation that I deserve.

Thank you for your time. Maybe one day, I will come and visit you, and you can be my host.

Love and kisses from Hashi, your loved one's Hashimoto's disease.

Glimpse into Hashimoto's disease

I have Hashimoto's disease. This is an autoimmune disease, which means that my body is attacking itself.
For an unknown reason, I have a high level of antibodies in my blood. This could be because I have had many viruses and illnesses in the past, but even with modern science, it will probably always be a mystery to me. Many things can trigger Hashimoto's disease, and one thing is said to be food intolerances. I have struggled with increasingly worsening undiagnosed food intolerances for at least ten years. My gut was badly damaged and my adrenal gland's ability to produce the correct cortisol levels was effected before I discovered my severe gastro symptoms were caused by a wide range of food intolerances. So in my case, food intolerances could well be the reason for the development of Hashimoto's.
When I was first diagnosed with Hashimoto's two months ago, my level of antibodies was 2000. It is meant to be less than 60. Four days ago, it was 2700 (Needless to say, I am currently not feeling well!).
When I am having a Hashimoto's attack, and my antibodies increase, my body becomes confused and in trying to protect me from an outside intruder, thinks the cells that make up my thyroid are what it needs to attack. Subsequently, my thyroid tissue is slowly killed off, and my thyroid overproduces thyroid hormone in its distress. This causes me to be in a state of hyperthyroidism, causing symptoms such as nausea, muscles aches and pains, dizziness, light headedness, a vertigo like sensation, anxiety, foggy brain, memory loss and confusion, shakiness, blurry vision, a fast heart rate, extreme fatigue, an upset stomach, loss of appetite, severe insomnia, weight loss; generally feeling horrible and miserable!
Eventually, someone with Hashimoto's can get to a stage where the thyroid can not produce any more hormone, so then you sit in a state of hypothyroidism. Due to past symptoms, I can probably say I have been in this state, but as yet blood tests have not caught this stage since my diagnosis. I am currently on Carbimazole, a medication which stops my thyroid producing its own hormone so as it bring me down from hyperthyroidism (for the second time in two months!), it is possible to go hypo and I have to monitor for this. Symptoms can be severe fatigue, depression, weight gain, swelling, muscle aches etc.
Hashimoto's disease differs from other thyroid conditions. Ultimately it is an autoimmune disease which by chance chooses the thyroid to attack (Grave's disease is another autoimmune disease which happens to attack the thyroid). Hyperthyroidism and hypothyroidism can be caused due to faults and damage to the thyroid. These can be treated by medication and apparently have a good success rate. (Some conditions result in the need for surgery though so they are by no means a walk in the park!). I wish I had been warned that treating Hashimoto's is different and can be difficult. My family and I heard "thyroid" and thought, based on experiences of several friends, it would be easily fixed. My doctor did mention, almost in passing, that the rule of thirds was relevant; one third of people treated feel a lot better, a third feel a bit better and a third don't feel better. However I wish he had given me more of a black and white warning. After years of doctor's shrugging their shoulders at you, you hear a diagnosis and think, this is it, I can be fixed.
The reason Hashimoto's can be difficult to treat is because of the fluctuating levels of hormones due to the attacks on the thyroid. It is therefore tricky to time commencement of thyroid hormone replacement without creating a state of hyperthyroidism. Hormone replacement is done with the intention of stopping your own production of thyroid hormone so that when the thyroid is under attack, there is not the overproduction of hormone and subsequent hyperthyroidism.
I have a long road ahead of me still. However, it feels like I have travelled miles and miles of mountainous terrain thus far in the lead up to diagnosis, so I feel I have no option but to be optimistic. It is possible that I may not tolerate the hormone replacement. I have to wait til my levels get lower again before I try again to commence it (I was commenced on it for the first time at diagnosis, and promptly went into hyperthyroidism, had lower levels then had an attack and went hyper again.) I feel apprehensive that when I commence therapy again, I will again go into hyperthyroidism. Not only does this mean that I might never successfully be able to undertake the treatment, it also means more time feeling horrible. Without therapy, I may have to put up with the symptoms I always get as my body fluctuates between low, normal and high levels of thyroid hormone. This is a bleak prospect as even at my best, I only get a few days a week of feeling good. I also feel apprehensive because if I feel worse again with the medication, or have to deal with symptoms without medication, I have difficultly maintaining a normal life; i.e my work attendance takes a beating, my social life is not existent; everything is affected.
I plan to blog my experiences and things I learn along my road since diagnosis. I have found it so helpful reading other people's experiences over the years, so I hope to give some help to others. I will also blog about food intolerances and the recipes I learn.

Glimpse into 2012

This year has been a haze of doctors, dieticians, sick leave, and hours of couch time. Last year, my energy levels had started to falter. I would exercise a couple of times in a week, and then be sick for weeks. By the start of this year, I would get fatigued for days on end for no apparent reason.

Dizziness and light headedness, which has always been an issue for me, became frequent and interfering. Brain fog became a way of life, along with memory and concentration problems, irritability, sadness, heart palpitations, and aches and pains.
As I got a handle on my strict diet, my stomach issues improved greatly though. Going from having gastro issues daily, I have managed to get to a stage where I usually only get major problems once or twice a month. Even though this means a very restricted diet, it is great to get an improvement in something that has become increasingly worse over the past ten years.

In the last week of October, I was diagnosed with Hashitmoto's disease. It has been an amazing relief that finally, after years of countless tests, thousands of dollars spent, doctor after doctor (and doctor after doctor throwing their arms up in confusion and giving up!), there has been a discovery to not only enable a possible recovery, but also to say "I am not crazy! I am not making it up!!"

The past two months since the diagnosis have not been good. I was started on 75mcg of Oroxine. After a week, I felt ok. I was optimistic that this was going to be an easy fix; that after all this time, I was going to be able to take one tablet a day and be feeling great in no time! It was not to be. By the second week of taking Oroxine, I started feeling lethargic and dizzy. It was not much different from what I am used to, so thought it was because I was on a low dose of Oroxine, and it would take a while for the effects to kick in anyway. By the end of the second week, I started to realise that the symptoms were becoming much more intense than what I usually have. During the third week, I had blood tests done, and I had become hyperthyroid. The dose of Oroxine, which was already meant to be a low dose to ease me into it, was decreased to 50 mcgs after two days of no medication. My symptoms improved but I was still feeling bad. More blood tests revealed I was still hyperthyroid. I was taken off Oroxine and commenced on Carbimazole to stop my own thyroid hormone production to try to bring down my levels faster. After a few days of taking this, I ended up in the emergency room with chest pain and severe light headedness. More blood tests showed my levels were improving so I stayed on this medication for a week.

Within 24 hours of stopping the medication, I started feeling severely lethargic, dizzy, shaky, had a very upset stomach and a racing heart.
On the fourth day of no Carbimazole, which was yesterday, I got in touch with my doctor, and although he was at home with a migraine, he met me at his surgery and after another blood test (just call me the human pin cushion), it was discovered that my thyroid hormone levels are on the increase again, and my antibodies, which is what proves I have Hashimoto's have increased. When I was first diagnosed, my antibodies were 2000 (the normal range is less than 60!). Yesterday, my level had increased to 2700, which indicates that my body is under a Hashimoto's attack, as luck would have it, just as I came off the Carbimazole! So, I am back on Carbimazole, and in bed with pain relief and an endless supply of audiobooks, music and tv shows, and help from my loving family. To say this is disappointing just hours before Christmas begins is an understatement; all that baking I had been looking forward to and hanging out with my visiting brother have been squashed. However, I have to keep optimistic. When I can get my levels back to normal, I can try again to start Oroxine, which will eventually stop my own thyroid producing hormone, so that when I am under these Hashimoto's attacks, my thyroid won't overproduce. My one Christmas wish is that this will happen. It is not guaranteed, and as my body has shown, it is not going to make this process  easy! I just hope I can get there on the next try, and that it will then improve my symptoms that I have dealt with for so long.

Although this year has been filled with struggling with feeling sick, with trying to make it through work, with trying to find a solution, there has been some good times too. Dan and I moved into a fabulous new apartment. I am so proud of Dan for having worked so hard and being able to buy his first property. We moved in on July 4th, our 4th anniversary. The past few months have been filled with getting the apartment set up, which has included numerous faults in the building to be fixed, but we are nearly there, and are starting to enjoy the place.
Also, when Dan came home for a break to move into the new apartment, he surprised me with the news that he was moving back to Brisbane! It has been an experience getting used to living with each other full time again, but it is great to have him around. A boyfriend in the same city! How novel.
This year has also shown me who my real friends are. Sadly, I have lost quite a few friends because being sick is not a great selling point for friendships. But it means that the people I have left in my life are the genuine relationships that I can rely on and trust. My family have been amazing as well. I have always been close to Mum and Dad, but over the past year, I feel like we have gone up a level in respect, love and trust.

This year is nearly over, and as I struggle to feel well enough to enjoy Christmas, I vow to make next year the year of overcoming my health issues. For the year 2011, I had planned to find out what was wrong with my body, which I partly achieved. For the year 2012, I planned to get on top of my issues and improve my health. This hasn't happened, although my diet has greatly improved things. However, I appear to have now made good on the plan for 2011, and so, in 2013, I want to take the knowledge that I have severe food intolerances with the subsequent gut damage and cortisol issues, and the discovery of Hashimoto's disease, and take any opportunity to improve. I will continue to research all avenues, learn as much as I can, eat as healthily as I can, think positively and take all advice I am given. In 2013, I WILL get healthy :-).

Glimpse into May to December 2011

The second half of 2011 was spent enjoying being in Brisbane. I tried to get fit, but my body was causing me grief and eventually I had to give up on any routine exercise. Work was good, but as health issues got more intense, my ability to improve my work-self decreased. Daniel continued to work away from home. We enjoyed a quiet family Christmas, and ended the year with friends.

In March, a gastroenterologist had been the first person to suggest I had fructose malabsorption. After months of gruelling elimination diets, multiple dietician and doctor visits and tests, it was confirmed. It has been an endless game of trial and error, testing which foods I am most sensitive to (basically all foods bar meat and seafood have some level of fructose), which foods I can tolerate in small amounts and which I can eat freely. The latter are few and far between!! Towards the end of the year, more tests revealed that not only do I lack the ability to absorb fructose (which brings along with it sensitivity to polyols and fructans), I also am intolerant to wheat, dairy, eggs, rye, peanuts. This raises a big question. What CAN I eat?!!