9 days have passed since the Scan number 1.
6 days since the Scan number 2.
Back on Synthroid for 9 days.
I am beginning to see the difference. I no longer need to nap for hours and I've been back at work. My exercise tolerance is pretty poor and last riding lesson on Sunday Jan 15 was cut short, because I was short of breath all the time. Riding is not just being a passenger on horse-back. Why even bother to ride...? It is one of those things I do, to prove myself I can DO it, prove those all-mighty doctors wrong. Why should I stay indoors all the time and give up something I love doing? I'd ride for five minutes, if that's the best I can do.
6 weeks without Synthroid puts enormous pressure on both physical and mental body. Everyone, as we all are individuals, handles it in a different way. For some it's a real struggle, for some it is easier. At the time when all I could do was ask for sick leave, I felt like s..t and all I could think was go home and back to bed. Few days after that I felt like I needed to lay down on the floor, because of extreme fatigue. I think I could have slept 24 hours a day. On top of all that.. my period was extremely heavy! Yikes!!!
And then, mammogram! Nooo way. Yes, I've been postponing it since last August, knew very well it had to be done, but there were days when I simply forgot, and another few days and weeks when I chose to ignore it. Mammogram was clear, not at all as bad as I had thought. Uncomfortable, yes. I nearly passed out when they were taking the oblique views, but it was really over so quickly that I had to "time" to pass out. I could have taken Brufen or Tylenol or something beforehand, but it all happened so suddenly. I went to have a chat with radiologist and all of a sudden I found myself in the "mammo room". I had a chat with another patient, who was very clearly alive, breasts not crushed, not in pain, not attempting to get out the department as soon as possible. Feeling encouraged, I went and had it done. It is worse than blood test, but absolutely not worse that pap smear. Definitely an option, when it comes to choosing whether to break my arm or having mammogram. I'll take the mammogram. I never thought I'd say this.
I guess it's like giving birth, that experience of labor, you forget it eventually, when you see the "result"- baby. I also find most of the days without Synthroid are slowly disappearing into shadows and I don't recall what that fatigue was really like. Was it really that bad..? Well yes, when I felt bed was no longer an option, that I had to rest on the floor, yes it was bad.
I questioned the need of thyroid scans, all these without my meds and lack of follow-up. My TSH dropped down to 127 and no one thought it is necessary to call me and ask if I am ok. Thanks be to God my husband, co-workers and friends were around, even though husband travels frequently and does not stay at home for long periods of time.
Once the Scan number 1 was done, I called the good old endocrine doc and said I'm starting Synthroid TODAY, no matter what, and I did.
Right now endocrine doc is waiting for tumor marker blood results and I feel he is dragging his feet and waiting for what... miracle..? Something that would say the scan was wrong and there is no activity at all. He is in denial..? Aww poor man.
He has most gorgeous eyelashes.
I did not "survive" those six weeks with his eyelashes in my mind.
I got out of the house, I rode the horses, I took yoga classes at home in front of the TV. I slept, I cried, I laughed, I watched cartoons and DVD's. I talked to people and horses, not really remembering a lot of those conversations.. I'd have loved to have stamina and courage to stay 100% with it, physically and mentally fit, but no, I could not do it.
6 weeks eventually comes to an end..
Showing posts with label WBS. Show all posts
Showing posts with label WBS. Show all posts
January 20, 2012
January 09, 2012
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.
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.
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