Still struggling

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?!?!

Update from Dr's visit

Last week I went to the Doctors to have a blood test... OMG it was a chore. They couldn't get blood... Firstly, they went into the left arm, as usual... it 'sprayed' into the syringe, but nothing... and as he moved the needle around in my arm he punctured through the other side of the vein. Whoops!

So, then he moved over to the right arm. I'm not the biggest fan of having blood drawn from my right arm, and I don't know why, but I have good veins there and so he gave a try there. So, he put the needle in, and completely missed the vein this time... I don't know what happened, but as he poked around and tried to find it he couldn't get a thing! OUCH!

To be completely honest, I don't think he knew what to do. He said this has never happened to him before, and he has taken my bloods before without any trouble...

He put me into the little room where I had my ECG taken before and asked me to drink some water and wait there. He would have the other guy, Dr John, do my bloods... I was getting nervous by now. I had gotten over my fear of needles back in the summer when I started having all the blood tests and stuff. I found the lab at DFM was great and I hadn't had any problems there... until now.

I sat there and drank as much water as I possibly could (to keep me from worrying, and also to hydrate me, in case that was the problem) and I hoped they wouldn't have to use a butterfly needle.

After about a half hour, maybe more Mike came and got me and said Dr John was going to take my bloods. He had a feel of my veins and said there shouldn't have been a problem - I still had good veins!

As I'm sitting there he gets the butterfly needle out - OH NO! My heart flipped, I hated those. They were sore and made me bruise badly... and regardless of what "they" say, they are not the easiest or least painful way to take blood...

I told him I didn't like the butterfly needles because I always had trouble with them, and so he used the smallest needle possible. He had Mike hold the receiver tube end and he felt around my right arm. I could tell he was going to insert lower down the arm from usual, in the forearm!

OUCH! The needle went in, and yes, it bloody hurt! It went deep and it was sharp as heck. He drew the blood slowly... a deep dark red blood. He said it looked a good healthy colour and that there shouldn't have been a problem.

He put some cotton on my arm, told me my results would be back by Friday and let me leave!

Man, I was hurting. I felt like a pin cushion... before I'd even gone round to the lab guys I'd had my HepA booster by Michelle too... I wanted something to eat and I wanted to be home.

My arm hurt to move it, it hurt to drive... so I clicked into cruise control and headed back to Mac.

Within about an hour the bruise was horrific. By the evening it had gotten worse again, and was getting bigger by the morning! I will never believe anyone who tells me the butterfly needle doesn't hurt and doesn't bruise! It does both!

Anyway, a couple of days later we went to get the results... we were hoping for something good. I'd been having a LOT of hair loss over the last couple of weeks and my energy levels were falling in the afternoon again.

Surprise, surprise, my T4 levels tested in the 'normal' range for the first time ever. I was super shocked, esp since I wasn't feeling "back to normal" (whatever normal is). My Dr is really good, he knows he's not treating the numbers, but this was the first hurdle. To get me back in the range, and then we could start aiming for feeling better.

Over the last few months my levels have looked like this on paper:
Up til now I'd been told that I should be feeling better by Easter... now he reckons it might be the 'summer'... I just hope it's soon... I could really do with a break on this Graves Disease. This is the first time I wouldn't be increasing my Synthroid after a blood test.

The Doctor also told me that considering the level of Synthroid it has taken to drag me back into the 'normal' range it is expected that my thyroid has been completely obliterated. Not a partial like expected, but that the whole thing is dust now! Nice thought to leave you with eh?!?!?!

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.