So, it seems like we are not as far down 'regulation road' as perhaps we thought. I am still not feeling right and we are rapidly getting to the point where we are becoming more and more nervous about exactly how long it is going to take before we settle on the right medication.
The Doctor tested my bloods for FT4 and for TSH. My FT4 was still registering in the 'normal' range at 1.4, but for my age the goal is to be closer to the higher end of that range (which is 1.85). My TSH still showed as suppressed. WEIRD.
I knew something was wrong, I could feel it, and I have read so many books and studies about thyroid disease recently and I just had a feeling that what I was feeling seemed to fit with my FT3 levels being low. I mentioned this to the doctor, and I'm not really sure if he agreed, but since I'm the one who knows my body the best he ordered the bloods again - FT3, FT4 and TSH.
I didn't realize he'd put a rush on them, and yesterday afternoon the office called to say that my FT3 levels were indeed low and that they would like me to start taking the cytomel medication as soon as possible.
It was good news and bad, but mostly good. Good because I now knew I wasn't going crazy - I knew my body well enough to know what felt wrong and was knowledgeable about the different thyroid processed and hormones to be able to work out that it was the T3 causing my problems.
Bad because it meant some more trial & error on a new medication and we really don't know how it's going to effect my body, or if it's going to mean starting back on trying to work out dosage and changing pills every couple weeks again.
I guess we'll see.
We are also being referred to see a specialist, a different one this time. They have referred me to OSHU which is one of the very best hospitals in the area and they have a very good reputation with Endocrine disorders. I'm not sure how long that will take, and perhaps before I get the appointment I will already be feeling better with the new meds... we can but hope?!?!
Showing posts with label hyperthyroidism. Show all posts
Showing posts with label hyperthyroidism. Show all posts
Wednesday, 3 March 2010
Wednesday, 18 November 2009
Graves Disease... WTF is Graves Disease?!?!?!
OK, so I'm really trying hard to catch up on this blog before the new year starts, so I'll be posting a few times a day over the next week or so, and hopefully my memory will be kind to me!
So, the week before the big June wedding I went to the Dr's for some routine vaccinations and a quick check up. While I was there he also listened to my heart and was not happy to see that my pulse was going crazy at 134 bpm. He asked some questions and felt my neck and glands and did a general once over. He said that he was pretty sure that I had something wrong with my thyroid and would like to do some blood tests. "OK" I thought, "that's not too bad, I can deal with that" and as he left the room I asked him "so, if it is the thyroid, then I just take a little pill every day, right?". He looked at me and just said "lets find out what the problem is first, then we'll talk about treatment".
Right there and then I had a gut feeling something was wrong. I'd been dealing with the high pulse for a long time, and more recently there seemed to be some other things that seemed "odd" but we just couldn't put our finger on it.
My Doctor had also ordered an ECG, so the lovely nurse (Michelle) came and got me and took me to the lab. She did my ECG first which was an interesting experience. Being hooked up to the machine with all those wires stuck to you, while someone takes a reading is kind of weird.
After that I went to get the bloods taken... they took lots. It seemed like my Doctor was going to check every single option so he knew what exactly was wrong with me. While I didn't really like having my blood drawn I was glad that they were so thorough and were going to find out if something was wrong with me. Ruth at the lab was wonderful too, she didn't hurt a pinch and while I was sitting there she could tell that I'd been crying and she was just so caring and sweet. I'll never forget that.
Then, after all the bloods were done Michelle came and got me again and took me back to her room so she could give me the shots I'd originally had the appointment for. I had 5 in total, and was starting to feel like a pin cushion / lab rat. I just wanted to go home!
The next morning was to be my bridal shower at the farm, so I tried my best to forget about what was going on.... my arms were hurting though, I was bruised from all the needles!
A week after that very first appointment Michelle called. She called to say my results were back and that my thyroid levels were extremely elevated and they needed to see me right away, could I come that afternoon? Well, we were just about ready to leave for the beach with Anna & Mikko (our Finnish friends), so I said I couldn't be there til Monday. She gave me the first appointment for Monday morning.
I didn't realise how long a weekend it would be.
I hung up from her and called Cory. He could tell I had been crying and didn't know what was wrong. He'd been at work that morning, but was about to leave to come home and head to the beach... The only words I could manage were "please come home now, I need you"...
I filled him in on what the Dr's had said, and he finally managed to calm me down enough that we were able to grab a bite to eat and head to the beach. It was a fun afternoon, but I kept finding myself drifting into thought about what they could have found, and what I was going to have to go through.
The next morning we were to head to Sisters as a little surprise for Anna & Mikko. We had booked tickets for the Sisters Rodeo and were planning to camp on Saturday night and return Sunday afternoon. It would give them a real taste of the USA! So, after a later start than we had hoped we hit the road. We grabbed breakfast on the way and soon enough we were entering Sisters. They had already guessed a couple of times that we were taking them to the Rodeo, but it was still fun to keep them guessing til the last minute.
The Monday before our wedding
So, on Monday morning I was diagnosed with an illness, one I'd never heard of until my Dr uttered the words "You've got Graves Disease"...
A few short moments after he said that sentence my brain stopped listening to what he was saying. I could hear the words he was saying, and I was some how able to utter an appropriate reply, or nod my head at the right time, but I'd blanked out, I was no longer understanding any of it. All I kept saying over and over in my head was "Graves Disease? WTF is Graves Disease?"
Thankfully, my Dr knew that I probably wouldn't remember any of what he had told me, and before I left his office he gave me an information booklet and my prescription and reassured me that he would be there with us every step of the way. He told me to go home and make sure I told my husband and family/friends that we were in for a long battle, and it would be 9-12 months before I was back to my 'old self'.
So... Me being me, I went home and after talking to Cory, my Mum and some friends I started my research. Boy am I glad I did. We realised a short way into the struggle with GD that knowledge would be our friend and it would see us through. We needed to learn as much as we could about the condition and treatment before we would see the Endocrinologist, because we would have some decisions to make.
The most ironic thing, and also the first thing I learned about GD is that it was discovered by an Irish Doctor - Robert James Graves. Thankfully, this is also where the illness got it's name!
Graves is an autoimmune disease that most commonly affects the thyroid, frequently causing it to enlarge to twice its size or more (goiter), become overactive, with related hyperthyroid symptoms such as increased heartbeat, muscle weakness, disturbed sleep, and irritability. It can also affect the eyes, causing bulging eyes and it affects other systems of the body, including the skin, heart, circulation and nervous system.
When Cory and I read through the list of symptoms I had all but one - I was a textbook case - how on earth had a Dr not diagnosed me before now. It seems like I'd probably had the illness for 3-4 years, although because it takes hold so gradually it's hard to know for sure.
So, the week before the big June wedding I went to the Dr's for some routine vaccinations and a quick check up. While I was there he also listened to my heart and was not happy to see that my pulse was going crazy at 134 bpm. He asked some questions and felt my neck and glands and did a general once over. He said that he was pretty sure that I had something wrong with my thyroid and would like to do some blood tests. "OK" I thought, "that's not too bad, I can deal with that" and as he left the room I asked him "so, if it is the thyroid, then I just take a little pill every day, right?". He looked at me and just said "lets find out what the problem is first, then we'll talk about treatment".
Right there and then I had a gut feeling something was wrong. I'd been dealing with the high pulse for a long time, and more recently there seemed to be some other things that seemed "odd" but we just couldn't put our finger on it.
My Doctor had also ordered an ECG, so the lovely nurse (Michelle) came and got me and took me to the lab. She did my ECG first which was an interesting experience. Being hooked up to the machine with all those wires stuck to you, while someone takes a reading is kind of weird.
After that I went to get the bloods taken... they took lots. It seemed like my Doctor was going to check every single option so he knew what exactly was wrong with me. While I didn't really like having my blood drawn I was glad that they were so thorough and were going to find out if something was wrong with me. Ruth at the lab was wonderful too, she didn't hurt a pinch and while I was sitting there she could tell that I'd been crying and she was just so caring and sweet. I'll never forget that.
Then, after all the bloods were done Michelle came and got me again and took me back to her room so she could give me the shots I'd originally had the appointment for. I had 5 in total, and was starting to feel like a pin cushion / lab rat. I just wanted to go home!
The next morning was to be my bridal shower at the farm, so I tried my best to forget about what was going on.... my arms were hurting though, I was bruised from all the needles!
A week after that very first appointment Michelle called. She called to say my results were back and that my thyroid levels were extremely elevated and they needed to see me right away, could I come that afternoon? Well, we were just about ready to leave for the beach with Anna & Mikko (our Finnish friends), so I said I couldn't be there til Monday. She gave me the first appointment for Monday morning.
I didn't realise how long a weekend it would be.
I hung up from her and called Cory. He could tell I had been crying and didn't know what was wrong. He'd been at work that morning, but was about to leave to come home and head to the beach... The only words I could manage were "please come home now, I need you"...
I filled him in on what the Dr's had said, and he finally managed to calm me down enough that we were able to grab a bite to eat and head to the beach. It was a fun afternoon, but I kept finding myself drifting into thought about what they could have found, and what I was going to have to go through.
The next morning we were to head to Sisters as a little surprise for Anna & Mikko. We had booked tickets for the Sisters Rodeo and were planning to camp on Saturday night and return Sunday afternoon. It would give them a real taste of the USA! So, after a later start than we had hoped we hit the road. We grabbed breakfast on the way and soon enough we were entering Sisters. They had already guessed a couple of times that we were taking them to the Rodeo, but it was still fun to keep them guessing til the last minute.
The Monday before our wedding
So, on Monday morning I was diagnosed with an illness, one I'd never heard of until my Dr uttered the words "You've got Graves Disease"...
A few short moments after he said that sentence my brain stopped listening to what he was saying. I could hear the words he was saying, and I was some how able to utter an appropriate reply, or nod my head at the right time, but I'd blanked out, I was no longer understanding any of it. All I kept saying over and over in my head was "Graves Disease? WTF is Graves Disease?"
Thankfully, my Dr knew that I probably wouldn't remember any of what he had told me, and before I left his office he gave me an information booklet and my prescription and reassured me that he would be there with us every step of the way. He told me to go home and make sure I told my husband and family/friends that we were in for a long battle, and it would be 9-12 months before I was back to my 'old self'.
So... Me being me, I went home and after talking to Cory, my Mum and some friends I started my research. Boy am I glad I did. We realised a short way into the struggle with GD that knowledge would be our friend and it would see us through. We needed to learn as much as we could about the condition and treatment before we would see the Endocrinologist, because we would have some decisions to make.
The most ironic thing, and also the first thing I learned about GD is that it was discovered by an Irish Doctor - Robert James Graves. Thankfully, this is also where the illness got it's name!
Graves is an autoimmune disease that most commonly affects the thyroid, frequently causing it to enlarge to twice its size or more (goiter), become overactive, with related hyperthyroid symptoms such as increased heartbeat, muscle weakness, disturbed sleep, and irritability. It can also affect the eyes, causing bulging eyes and it affects other systems of the body, including the skin, heart, circulation and nervous system.
When Cory and I read through the list of symptoms I had all but one - I was a textbook case - how on earth had a Dr not diagnosed me before now. It seems like I'd probably had the illness for 3-4 years, although because it takes hold so gradually it's hard to know for sure.
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