How to survive without Synthroid for 6 weeks in preparation for Thyroid WBS Part 2

Thyroid WBS: painless, but takes a bit of time, so wrap up warm. Most of us, who are severely hypothyroid, are already cold, and I wish I had brought woolly socks and cardigan to wear. I had to get the scan done twice; second one took just 20 minutes, but first one.. seems like hours and hours. Technician, who "did" my first scan was there for the second one too, but his facial expression seemed as if... someone had burst his bubble. Deflated his tires. Planted a chewed chewing gum in his hair. Locked himself out of the house in 32 F. Oooops. and how am I supposed to feel then..? All of the above?
I actually felt nothing, just fatigued and brain fog has not lifted yet. I forget to eat and drink, when I do remember, I feel whole lot better.
"Under the scanner" yesterday I was feeling cold (made a mental note to wear thermal underwear next time). Feeling cold and uncomfortable (bring your fluffy pillow and mattress too lol), brought tears in my eyes. Nuclear med doctor came to chat with me at the end of the scan: There two "small" areas that lit up like a Christmas tree. Two?
CT scan of the neck last Wednesday showed a bubble like structure, and I wondered what it was.

TSH 127.28. Free T3 0.26. Free Thyroxine <0.79. TSH high high high, rest of the low low low.

I did not feel "radioactive"nor I was glowing in the dark. Boo hoo. Of course I knew that, but could not resist the temptation to ask Will I glow if I wake up at night? I might not need lights in the restroom then..? Awww that look of disbelief in their eyes. Gotcha!

Never give up your sense of humor, in fact now is the time to become wicked and keep it up.

When facing the mirror, and puffy eyed stranger stares back at you; YES it is you. Still you. Make the most of it. Milk it, as they say. Use the Cancer card. Read my blog and comment.

I've got to deal with what comes next. I have four options, and next step is thyroid ultrasound and biopsy. Possible biopsy I say, as if I have any say in this, but actually truthfully I do. It is my body and I can use and abuse (pun intended) it the way I like lol.
I am very much aware that each of us have our own battles and challenges. Simple blood test and the sight of needle may just be enough for some- and that's ok. Do whatever it takes to get it done. Some stuff is awful, creepy, disgusting, humiliating etc, but whatever it takes. You decide.
Friend of mine has a horse, but is scared to ride. I also own one, and sometimes I'd rather not ride. Scared of falling off, scared of countless "what if" scenarios, but because options are limited; either you fall off or stay on, this sort of mind-game becomes boring. So I keep showing up in riding lessons, ride, do my best 99% of the time and I can say I am half way there. Somewhere.
Same applies to nasty stuff that happens in hospitals. We may not care about everything they do us, but we keep showing up, sometimes intoxicated, because right then it is IMPOSSIBLE to even think about quitting, it has to be done no matter how unpleasant.
I had TSH level and tumor marker bloods done last week, felt like shit, but had to get it done. I took friend of mine with me. He kept me endlessly entertained with just being there, being present. There are people like this. He also tells me dirty jokes every now and then and I bet he could make some people veryyyyy uncomfortable. Someone like him, take him with you to scans, tests etc and life's just tiny bit easier for you. I might ask if he'd like to have date with me in ultrasound. For dessert we'll have biopsy. How about that?

6 weeks is a long time without Synthroid, even with Cytomel added there to make life somewhat bearable, but the end of it will come. Eventually.
I wish I had been able to take three honest weeks off from work, but did I not think I could just breeze through this one too. Not a walk in the park. I can't over emphasize the importance of sleep and rest. Watching TV and facebooking are excellent, as well as getting outdoors every day. Walk around the block is already great.

Neuropathy, ever so welcome visitor, attacked my hands last week- no doubt because of low TSH. I can't type anymore.

How to survive without Synthroid for 6 weeks in preparation for Thyroid WBS Part 1

6 weeks- 1.5 months, 45 days approximately.
The hospital where I am going to have the scan has protocol that says stop Synthroid, start Cytomel for two weeks and then stop Cytomel too. TSH check prior to ingesting iodine 131 capsule. Now it looks simple enough written like this, and this is why I also thought six weeks would pose no challenge at all.
I stopped Synthroid in late November and felt almost normal. Cytomel caused right middle finger to twitch, and then proceeded to tremor so that I was totally unable to type and write- both essential skills in my work. Once Cytomel was gone, it was a rather rapid decline. Fatigue hit me first, then puffy eyes, fingers, toes. Then incredible tiredness. Then that sort of feeling that drove me to endo's office begging for magic solution, which in this case was sick leave.
You do not want to start cooking and planning weekly meal menus, when you feel this way. You might feel you need nothing to eat or drink at all. If you, like me had to stay on low-iodine diet for two weeks prior to iodine scan, that's another hurdle. I am very fond of bread and corn flakes and ice cream, and now having to limit those to almost zero was depressing. At the very beginning energy levels are still ok, it would really be worth planning some activities for those days off from work/school/studies, even if it just one activity a day. Worst for me was feeling I am trapped at home and there is no place to go. My horse and precious friends (thank you K, you know who you are!) kept me going, no matter how pale, tired, puffy and edematous I looked. I did feel at times that I couldn't go out at all looking like this, but I did.
Food cravings are another challenge! Carbs, carbs and more carbs! I succumbed twice and had spaghetti and garlic bread. Piece of chocolate on another occasion. I managed to find wheat free, salt free rye bread in one of the local stores, and it was a real treat!
When I made the effort to cook- stuffed peppers filled with onion, minced meat, garlic and mint and spices, I felt pretty much human again. Waiting for the real serious hypothyroidism to hit, and then begin to plan what and how to cook is just not always possible. The amount of energy that's spent in thinking and planning is just too much some days, and the easiest option then is reach for corn flakes and milk, or not eat at all. Both aren't good and we all know it- when I had spaghetti and garlic bread, I was just hungry and could not think about anything but food, preferably pasta, something very salty and tasty. I got all that- and felt no guilt either, not then, not today.
The diet is not 100% iodine free, but I guess as close as 100% as possible. It does not say "Thou shall not eat anything that contains iodine". It is a low iodine diet that sucks if you're on it long term and do not like the foods that you CAN eat. 2-3 weeks is pretty long term to me - of course nothing compared to diabetic, wheat free, renal etc diet. I'm just saying that maybe possibly one could cope without Synthroid, but with an added pain in the butt=diet it becomes much worse. Feels like there is no enjoyment left in life. Internet is full of low-iodine recipes, but if you've got no strength to get up and cook, then it is hard. If you plan ahead, prepare lunch, dinner and freeze them, then you are much better off I would say.

This is not the time to make long-term plans or financial decisions either.
Not the time to embark on major weight loss program, start training for marathon, even though some people may have done it.
There are days when "brain fog" just does not appear to clear. Can't read, can't write, type, remember what was discussed just moments ago. Your mood might be difficult to control- mine certainly was. Just feeling wrecked inside and outside, does not leave much empathy toward people, who carry on as normal, not having to worry about anything in the world.

Each of us have our own challenges to overcome, and preparing for thyroid scan is pretty simple and straightforward. Compare it with bone marrow transplant, major operation,recovery from burns, major financial loss, damage to property, violence, war,death of loved one, loss of limb or car crash. There is always something worse, but these just aren't on the top of the agenda when you can't get upstairs without getting short of breath. Each day is a step towards the goal, which is the scan, and then fingers crossed that it all goes well. "Be positive, think happy pink fluffy thoughts" and it will all be ok.
As long as it's done, not postponed when you've reached this far and then coping with the outcome whatever it is becomes just tiny bit easier to handle.
My mind, the state it is in right now, can't handle much more information- which really is just as well, because I could and should think about What if's... What if the scan is not clear..? Blood tests have already shown something suspicious in tumor markers in my case, so I really need a clean and clear scan. Let this be the last scan too. Pliiiizzzz?

There is something called Thyrogen, recombinant TSH, which has been used in preparation for thyroid scan, but our hospital does not have protocol for it in nuclear medicine. What century are we in? Can we not get it for our patients and make their lives easier? I've read about Thyrogen, but it is difficult to recall what I have read right now.. Brain fog. My aunt, who had chemo for breast cancer, always talked about "chemo brain". Brain fog should keep me and my co-workers entertained, when I return to work soon.

I cried last week, once, when there was something I needed to do- sign a paper, unbelievable. Simple stuff in normal circumstances, but not right then. Husband drove me to the office, I threw up in the car once on our way and once on our way back. I got into an argument at the "office" about signing the document, feeling nauseous and feeling like I could have thrown up on that idiot who was grinning behind the desk- no doubt feeling protected there. Since there was no way of attacking them physically (as if I would do that normally..), verbal abuse was the way to go. They wanted me to sign the document was well and a FINGERPRINT!!!!! Yo man, I must have not heard you correctly, but yes, there is was, ink pad right in front me. Ink effing pad! Fingerprint! All women must give their fingerprint. That was in Jurassic Era, mate. I asked that grinning idiot, whether he thinks I'm unable to read or write. Grin as response, nothing else and gesture towards the ink pad. Ok, they won, they got my fingerprint, perhaps not the one they initially wanted: my Middle Finger. Yay baby. On the way back home I cried and husband could say nothing to make me feel better.
I have since recovered, but this goes to show moods are very volatile during hypothyroid phase.

Part 2 will follow- perhaps it will make more sense then.
At least I will have scan results by then.
By then brain fog will have been lifted too, and I can see Myself in the mirror again, not some puffy Cookie monster.
Part 2 will hopefully contain something more positive- such as what did I learn from all this. If anything.

Happy 2012

Here's to the future

Off from work and more time to reflect.. perhaps. Only if I was not so tired. This is both mental and physical tiredness and it just does not go away no matter how long I sleep. Where is that post again "Surviving 6 weeks without Synthroid in preparation for Thyroid whole body scan"?
That post has not been written just yet. Not yet, but I am about to.

Few more days of 2011 left. Greatest achievements? Many, being healthy and happy most part of the 365 days a year, all those days were remarkable. Feeling, staying alive, keeping up. I passed an important healthcare quality exam. I rode in my show jumping competition- last one was more than 25 years ago! While I did not get clear round (the horse would have, had I not been sitting up there slowing her down..), I got that experience of being there and riding. Cross country riding did not end that well- I got half way through the course and full stop arrived at jump number 8. I fell, dislocated my shoulder and while the show must go on, mine did not on that day. Shoulder popped back into the socket, plenty of ice and shoulder was as good as new! Weird! It is actually feeling better than it was.
I mean don't go falling off your horses and bikes etc, it may not have happy outcome, but well, mine was- lucky. I was wearing body protector and riding helmet- without them it might have been a different story.
Falling off and climbing back on has not always been this easy! I fell off once in Dulwich Riding school, badly bruised, embarrassed, two broken ribs and broken bone in my hand and foot nearly got caught in the stirrup iron- it was frightening and I never went back riding there. Nothing to do with the horse, school, instructor- it was just me and my shattered confidence. Healing took time, but now I have a horse and ride almost every day. Most important, it is fun.

That is of course, when fatigue does not stop me.
Kundalini Yoga once again provided me with solution: one of Gurmukh Kaur Khalsa's yoga DVD's. Can't remember name of the kriya, but it does awaken me. I swore I would not get depressed and anxious this time, but unfortunately lack of thyroid hormone can really wreck person's life. I also did not think I'd become puffy and edematous, nauseous, gain weight, begin too lose hair, bleed extra heavily during my period- or is it all in my mind? We all react differently, for sure. My last scan was in 2004, but I barely noticed anything out of ordinary. Yoga teacher training kept me busy. Light sattvic diet was exactly what I needed, along with hours of activities to keep my mind occupied. Kriya a day and chanting surely help this time too, or else I believe I would be in bed all day long, thoughts of anxiety escalating. I must say I am happiest when I sleep!

Asking myself that question of what's my life like, and how much do I really truly appreciate being alive? The answer is I appreciate being alive. No matter how much these scans and blood tests try to put me down and tell me to dig a hole and stay there until I look presentable and "good enough" to get out of the house. When I spoke to my doc this morning, I burst out in tears. I don't expect he saw it coming, but I was feeling very fragile and I still am. Unable to eat anything I want... low-iodine diet will be my companion for the next two weeks. It's not just the scan, it's all this preparation that drives me madddddddddddd! Then yes, the scan itself, while it does not hurt physically, it can be quite a mental journey to and back from chambers of hell in the mind. What if... what then.. will I die? Put those filthy thoughts out of your mind! How do I feel right now? Pretty much ok. Not as if I had something alien growing in my body, surely I would have an idea, tiny seed of doubt in my mind, if this was the case. Cancer would not just sneak back into my life without some sort of alarm bells ringing.

These are things that can form vicious circle of thoughts and ideas, but fleeting moments of clarity enable me to see not everything is black and white on this circle. There are ways to get out and find hope.

My wish is that 2012 will bring joy, health and happiness to everyone's life.

Sunset

Cancer story

My cancer picked wrong person, just like cancer always does, and many other diseases for that matter. Mine was follicular variant of thyroid cancer, such a fancy name, I thought it would be nice to have it printed on a T-shirt. Two operations and RAI, and I was supposed to be feeling as good as new. The doc said "this is one of the best cancers you could ever wish for"- yes, and what are the other cancer types that I could also wish for..??? He had no answer to that question- proving my theory right that doctors don't know everything after all. I felt very pleased with myself; my doc has limitations and knowledge gaps. I don't have the world's best/easiest cancer after all!
Thyroid scans and Synthroid followed, and it was incredibly challenging to find the right dose of Synthroid. 8 months after the second operation I developed severe chest and upper abdominal pain (What now!?!?) and I was admitted again. Fever, iv antibiotics, Morphine, constant nausea, vomiting went on for two days and ultrasound exam revealed I have gallstones. Three giant stones, and "hundreds" of small. How many stones can you squeeze in gallbladder? At least three giant, and hundreds, if not thousands of "small" stones? I begged the doctor to operate, and on a Friday morning I underwent a laparoscopic cholecystectomy. Pathology report showed I had both acute and chronic inflammation of the gallbladder.
This all felt almost worse than the entire cancer episode! I had a JP drain in thyroidectomy incision, it came out easily, but not the one in the vicinity of the old bladder. Aaaarrrrgggghhh! One of the worst pains I could have imagined. But the drain is out and it is no longer part of me.

Cancer days are over, but it does not mean they have been forgotten. Thoughts of recurrence appear sometimes, especially when I go for check-ups. I had a chat with my oncologist two days ago, and he said he would be happy for me to pop in and see him once a year. He felt that recurrence would be very unlikely- and I am going to hang on to those words.

I am feeling ok, most of the time, no longer depressed as I was after the diagnosis and inbetween all the treatments and operations and scans and seemingly endless blood tests. The balance between hypo/hyperthyroidism is still difficult to find, I seem to slide between the two all the time, no matter how we try adjusting the dose. Crap! I feel much better without the thyroid, it was annoying me, but small white Synthroid tablets don't seem to work that well either.

Ong Namo by Siri Ganesh Kaur

Lana Del Rey - Born To Die

1920hrs

Nothing wrong with going to bed at twenty past seven in the evening..?
Probably not.
5 year "cancerversary" AKA anniversary is approching, it is just another month and a day away! 5 year anniversary warrants one more (fingers crossed) thyroid scan. In preparation I stopped Synthoid in early December and started Cytomel. Shortly afterward I began experiencing tremor; it started in my right had, middle finger and promptly proceeded to rest of the fingers. Right hand? Right. The one and only hand for using computer mouse and for many other countless tasks. Fatigue. Forgetfulness. I seem to be unable to remember what I was saying just a moment ago- these days I am writing everything down, all sort of instructions especially at work. I really have no desire getting into trouble because of poor memory, even though it is probably just short-term. And who says Cytomel is to blame? My memory has been ok, not excellent, but just fine, so Cytomel and fatigue and all other problems it has brought into my life, might be affecting memory too.
Dec 21 means just one thing: Discontinue Cytomel.
Party starts then.
I am sure I can beat short term hypothyroidism. The scan itself will take place in early January.

Am I worrying about possible recurrence? I may, but then memory issues take over and I could just easily forget I was worried moment ago. But honestly, I try my best not to worry.

Going to bed early sounds like a great idea- a fatigue fighter.