Friday, February 20, 2015

My endless search for doctors

When I got my original hypothyroid diagnosis - I lucked out and found an endocrinologist that was decent.

Granted, he was literally like, 90 years old and he was super cocky and claimed to be the ultimate thyroid expert every chance he could - but he seemed nice and knowledgeable and after starting on the meds he suggested I started to feel better.

I had always joked with my husband that I was going to be screwed cause this guy was so old, he was going to die and I'd have to start all over. (I know, I know - super terrible of me to say - but seriously - this guy was ancient)

I'm happy to report that he didn't die - but he did retire. In the most asshole way possible if you ask me.

See - when I started seeing him it was a private practice and everything worked and then he merged with some huge endocrinologist group or something and it all went to hell from there. I would show up for appointments that they confirmed the day before and they would have no record of my appointment in the system. Then they lost my files - then I had to wait one time for an hour and a half for them to take my blood.

It sucked - but I was feeling better and my appointments were spread out and I knew they were having growing pains so I let it go.

Then I noticed I was running out of meds and there were no refills left - so I called to get an extension and make an appointment. After they finally found my records in their system they informed me that they couldn't extend my prescription without seeing me first. I explained I had an appointment scheduled for the following week which they had confirmed recently and they informed me that my doctor had retired. No notice, no plans to call me and reschedule that appointment - no nothing. So I explained that I needed my medication and hadn't felt well lately and after talking to 3 different people they said they were sorry but I had to come in. I said - fine - when can I come in - they said - we don't have an appointment available until next month. (even though I had an appt. scheduled for the following week - I'm guessing I would have shown up and they would have said - OOPS sorry he no longer works here but we'd be happy to reschedule)

I hung up the phone and started to cry. I did call that practice back and leave a  few messages and they never called me back. (I still have to call them to get my records actually... add it to my list of things to do that I will forget about in 5 minutes)

 Now I was in a jam. I had almost no meds left and no doctor to see and my symptoms were acting up. So I started the miserable task of searching through my network to find an endocrinologist that might know something about thyroid disease that would see me immediately. I couldn't just go to any doctor because if they didn't know about thyroid disease they couldn't help me.

I asked around and got 2 suggested doctors. I made an appointment at one for a week later and had high hopes that soon I'd feel ok again. Off I went to this new - and highly recommended doctor.

Long story short (sorry I talk a lot) I ended up sitting in my car, crying like a high school girl whose boyfriend just broke up with her before the prom. I had forgotten my Medical ID card(thank you thyroid brain fog) and when I explained that to the receptionist she told me they wouldn't see me unless I had my insurance card. I offered to call them and have them fax something and she said they weren't allowed to do that. The doctor then came out and very rudely told me that she had never had a patient ask her to call the insurance company before(her exact words were something to the effect of, "that's ridiculous")  and that she would not see me because doctors offices don't do that.

I walked out and sat in my car and cried hysterically for 5 minutes.(boogers, tears, no tissues - it was not pretty)

I had 2 pills left - no doctor - and my symptoms were in overdrive because of all the stress.

Doctor number 3 might be the one that takes the cake for me. Also recommended. I knew from the moment I walked into the office and waited an hour after my scheduled appointment to be seen that this wasn't going to work out - but at that point -I needed them to take my blood so they could extend my prescription. Let's go bullet points with this one. Everyone loves bullet points right?
  • She jacked up my arm when she took my blood and then said something to the effect of my veins were problematic (my veins are huge - she was clearly an idiot who loves to torture people with needles as you could land a plane on mine)
  • She asked me about my symptoms and then clearly stared off into space totally ignoring everything I was saying and she kept asking the same basic questions all over again almost like talking to someone with alzheimers
  • She consulted my latest thyroid ultrasound and asked me if I had had a biopsy - I told her I had not because my last doctor said it was normal 
  • she then told me I should have a biopsy because my nodule was probably cancer
  • she then said, "but it's no big deal because people don't normally die from thyroid cancer"
  • we continued talking about the nodule and then she flipped the page in her records and said - nevermind the nodule is too small, you're fine
  • then she told me I should take half my prescribed dosage of medicine
  • on the way out - I tried to confirm that I should take half of a pill every day and she said, "no, you  take a half a pill every few days and the rest of the days you take the full one" (clearly I am an idiot for not being able to follow her directions)
I left that office knowing I would never be back and praying that the damn prescription would just go through  so that I could find a new doctor.

The prescription didn't go through. I had to call back 3 times until some nurse finally called it in the right way. And my arm was all bruised. I hate that doctor.

Then I started doing MORE research and found a doctor sort of close by that is known to treat symptoms and NOT lab results which is important for my particular situation. After getting an appointment  -  I sat there feeling hopeful and waited, and waited and waited. Once I saw the doctor he was great. Super attentive, listened to me and seemed super helpful. But I'm finding there's always a catch in these situations.

Doctor number 4 is great - except he's impossible to get a hold of. His office staff is rude, condescending and non-responsive. (there are countless reviews online that specifically reference how horrific his office staff is)

I mean - I have literally left messages for 2 weeks now that my symptoms are back and that I need to maybe switch meds and FINALLY got a nurse on the phone - talked to her and she was going to call me right back and it's been 5 days. AND I left another VM since that conversation.

Insert sad, dejected grumpy face.

Why is it so damn hard to find a doctor that
A) REALLY specializes in thyroid disease (not just what lab numbers point to what diseases but all the associated symptoms and best ways to treat them)
B)  Is easily accesible
C)  Is in my network
D) if they don't specialize - who will care enough to sit and talk to you and not be clearly hoping you will stop talking because he has 5 more patients waiting to see him and he has no time for you

I have had doctors tell me the symptoms are in my head. I had hives for 3 weeks straight and went to 2 doctors during that time and neither of them connected them to my thyroid/autoimmune system but they were happy to put me on Benadryl AND Prednisone and tell me they'd go away at some point.

So my search continues. I will continue to be poked and prodded and have my blood taken and analyzed all while taking this medicine that is supposed to be fixing me and crossing my fingers that my symptoms kind of go away on their own.

I am stuck in a vicious cycle at the moment which is that I know eating Gluten is making me feel worse - but I think I have to have gluten in my system when my blood work is taken so that we can see what it's really doing to me- so I'm scared to stop eating gluten again because then we can't do the blood work but I also want to stop eating gluten so I can stop being so damn tired all the time.  My understanding on Gluten is that it really needs to be in your system in order to test it with blood work - so it's not like I can eat gluten free until I see a doctor and then eat a slice of pizza on the way into my next appointment. So - I'm trying to make sure I enjoy this experiment as best I can = by eating as much of the glutenny goodness/ carby favorites as I can before I possibly get the notification that in fact, I need to give it up for the rest of my life - because with thyroid and gluten you have to give it up 100% - you can't cheat - ever or it can set you back weeks/months.

At least that's what the research says - because so far I haven't found a doctor who can tell me too much about it - so maybe I'll find a doctor who will say - it's not Gluten - the problem is you need to eat a cheeseburger every single day and get massages and pedicures weekly and you should NEVER NEVER NEVER do laundry again that will fix you right up.

(one can dream right?)

Tuesday, February 17, 2015

I am sick all the time

I have decided to write it all down because recently I have found comfort in reading stories of others like me. There is something extremely comforting in hearing others describe what they are going through and I thought maybe my story could do that for someone else. My husband is the only person who really understands just how extreme this illness is and I am lucky to have someone so supportive and understanding standing beside me along the way.

I was not always sick. In fact, I feel like I was barely sick at all and can remember at my prenatal appointments, talking about how besides the occasional cold, I had a clean bill of health. My first pregnancy was bliss. I seriously thought I could be pregnant forever. My recovery didn't take long and I was rocking staying at home with my daughter. I was a bit stressed and kinda cranky a lot (seriously, my husband is a SAINT) - but I attributed that to living in a new place and knowing no one and not really having a strong local support system.

My second pregnancy was harder on me but still, nothing extreme. The recovery is where I noticed a change. It took forever. I was more exhausted than I had ever been in my life. I was confused and got migraines all the time - there is no level of bitchiness that could accurately describe my moods - I was kind of like the Hulk - very extreme and very quick changes - all day long. I would go to bed at 9 and wake up and still be exhausted. I had to start calling my husband home from work during the day because I couldn't function with 2 kids at home.

I thought it was because I was breast feeding and getting very broken sleep. I thought it was because I had 2 kids instead of one.

Finally, a friend said - Get your blood work done. Now - I had hardly ever had my blood work taken other than during my prenatal appointments. I was desperate - I needed to find out what was wrong with me - so I went to the doctor and asked for help.

Here is how that went and here is where I think other people like me are going to start to say - "Holy crap - that's how my story started"...

Me: I'm extremely tired, very moody, am getting debilitating migraines and just don't feel like myself.
Doctor: Well, you have 2 kids now and you're tired and stressed
Me: This isn't just the kids - my kids are easy and well behaved - I really think there is something wrong - can you run some blood tests?
Doctor: I don't think a blood test is going to tell us anything - you just need to get more rest. You have 2 kids now and that's different and your body needs to adjust
Me: Can you please take some blood - I have always been stressed and this is different. I really think there is something wrong
Doctor: Fine, I'll take your blood but it's not going to show us anything.

I left that appointment, depressed, dejected, anxious and angry.

2 days later - I got a phone call from the nurse with my results that would start the whole spiral of craziness that is Hashimotos Disease and Hypothyroidism.

The nurse - called and said something to the effect of - We got your results and honestly, I don't know how you're waking up in the mornings because your thyroid levels are so low you shouldn't be functioning.
Me - OK what does that mean?
Nurse - You  are Hypothyroid
Me  - so now what?
Nurse - oh, nothing you'll be fine - you just have to take a pill every day for the rest of your life and you'll feel better in no time.

Which if you have hypothyroid you know, is bullshit. But, at the time - it gave me hope and I thought I was going to be all better.

She suggested I go see an endocrinologist but said it was "no big deal"

I started taking Levothyroxine every morning - as soon as I woke up. Here's the fun thing about that medication. You have to take it a full hour before you eat or drink anything and can't take any other medications during that first hour either. (when you frequently wake up with headaches a lot  that can be super fun) This was easy when my youngest was still little because he woke up for feedings, etc - so I would take it and then go back to bed. Once he started sleeping well and we all woke up together - this became more difficult and annoying because I have to take it as soon as I wake up and then I can't eat or drink anything but water until after the kids are out at school.

I made an appointment to see an endocrinologist that a friend suggested and really lucked out. He was a nice - but cocky old man who really took pride in his focus on thyroid disease. (Most Endocrinologists seem so focus on diabetes - so someone who fully understands thyroid disease is hard to come by) He actually told me that he was impressed with how low my numbers were on the scale and that he had never seen numbers that low before.

That doctor further dignosed me with Hashimotos Thyroiditis - which is an autoimmune disease. Here's the kicker - that doctor didn't go into too much detail on the whole autoimmune thing - just that it was a particular type of thyroid disease that would mean that I could bounce between hypo and hyper and would need to be monitored. What he didn't tell me is that Hashimotos is an autoimmune disease which means my own cells are attacking my healthy cells making me sick all the time. My immune system is in overdrive all the time trying to kill itself... yeah - sounds fun right?

Great I thought. I have a diagnosis and a medication and I am on my way to getting fixed.

I was so so so so so wrong and I had no idea. Looking back I'm kind of glad I didn't know that it was going to be a long road ahead because at the time I don't know if I could have taken that news well. I was too depressed and needed to think that everything was going to be ok.

I took the levothyroxine every day - as stated. I noticed my headaches started to go away and I wasn't as tired. I went to the old doctor and had my blood drawn (which I'm still not used to) and we adjusted my medication amount just a little. I was slowly starting to feel better.

Then about a year after I started taking the medication - I lost 10-12 pounds. Pretty much out of nowhere with no effort or planning on my part. It just happened. My energy levels were normal again which for someone who had been so exhausted for so long - made me feel like a super hero! But, I was nervous about the random weight loss because I had always been the type of person who no matter how much I did or didn't work out or no matter what I did or didn't eat- pretty much stayed at the same weight/shape - so I was concerned.

I went to a GP and a Gyn and had them both take blood work to see if something was wrong with me and they both said all my hormones and blood work were fine. After doing research online, I realized that sudden weight loss was just my body "normalizing" on the thyroid medicine. I lost the puffiness in my face which I never really noticed until it was gone and I was feeling ok for the most part. I had great days and ok days and some days where I just needed a nap or had to lay down while my family was eating dinner because a headache knocked me out for a night here and there.I had a good 6-10 months or so as my body adjusted to being on the thyroid medicine and I was happy and relieved.

Then - the migraines came back, my skin got so dry that applying lotion even multiple times an hour wasn't enough. My scalp was so dry that it was flaking and itchy and painful (not dandruff - it's super dry skin and it' awful) I was bruising all over all the time again, My fingers sometimes felt swollen and then the worst part - the sleep issues. I was exhausted ALL THE TIME. But had bad insomnia where I couldn't sleep. Just the little light that showed the baby monitor was on was enough to wake me up out of what I thought was a deep sleep. I would shoot awake at the sound of a kid rolling over through the monitor and then not be able to go to sleep for over an hour. And I was a bitch - cause it sucked and was frustrating and there was nothing I could do to make it stop. Going to bed earlier didn't do anything - waiting until later didn't do anything and my kids almost always made noises in their sleep right as I was getting to the point where I could fall asleep again. (here again, is where my husband is a saint - because I'm a raging bitch at night when I'm having these issues and lucky for me he doesn't take it to heart or let it bother him)

It got so bad at points, that my husband would take the monitor with him and sleep somewhere else to try to make the room totally silent/dark for me and most nights that worked - and some times it still didn't work and then I was angry and depressed cause we were sleeping separately for nothing and I felt like an annoyance.

I still can't sleep in a room with my kids. I hear every breath, sheet moving, roll over and snore and it leaves me wide awake and helpless. I know it sounds overly dramatic and I think that's the worst part for me - because I am not exaggerating. I am not being a spoiled little princess who needs to suck it up or toughen up. It's serious for me - not sleeping at night can ruin the entire next day for me. I will get a headache, I will hurt more, I will be crankier and I might get brain fog (where I can't remember anything I'm doing all day long)

Having a chronic illness is a pain in the ass. I never feel normal. I have lost interest in doing lots of things because I simply don't have the desire anymore. It's frustrating when you go to bed every night and hope that tomorrow is going to be better. It's kind of a joke between my husband and I that "tomorrow I'm going to wake up just fine" I sound whiney - I come across as annoying so I don't talk about it too much because I think people think I'm making excuses and that I'm being a drama queen. People say - but you don't look sick or you take medication. Yes - I do take medication - sometimes it helps, sometimes it doesn't. Even my "specialist" doctors can't explain all of my symptoms or give me help in how to make them go away. They basically say that this is my bodies normal and there will be good days and bad. How is that for hope?

I could go on and on for days. I'll try to spread it out. But here is where I'm at right now.

  • I have a chronic illness
  • My doctors don't fully understand and don't offer much help outside the standard thyroid disease - take this pill and you'll be fine answer - I have even had one tell me the rest of my symptoms were all in my head and have to be "something else"
  • I have to research a lot and try things on my own and hope they will help
  • Every day there is a chance I will wake up not feeling well and any one or a combination of the following can be my issue that day
    • A lingering headache
    • dry, painful skin
    • brain fog
    • exhaustion
    • moodiness that makes pregnancy/menopause look like a cakewalk
    • extreme migraines
    • being cold no matter how many layers I'm wearing (no, I'm not making this up - it's legit - laugh at me and my sweaters and scarves and hats but I seriously am ALWAYS cold I would LOVE to wear regular clothes and not have to dress for the damn arctic all the time)

    • confusion
    • depression
    • anger
    • nausea
    • dizziness
    • swollen joints
    • insomnia
    • TMJ 
    • ringing in the ears
    • sensitivity to noise
    • sensitivity to light
    • feeling like I have a fever 
    • extreme itchiness on my legs
    • Hives
I feel like an annoyance and burden.
I get depressed because it's seemingly never ending.

I can't predict when any of these things will happen - and there is no real rhyme or reason as far as I can tell. They just come and go - sometimes more severe than others.It's hard because all of these things are invisble to other people - and I'm sure people think I'm making some of it up and I'm sure people are sick of "hearing about it" The fact is, I actually don't talk about it all that much considering I feel these things almost every day. I try not to talk about it because I don't want to be "that girl" At the same time, I am that girl and I am sick and I am upset and it is hard and slowly, I am finding answers and for every successful day - I have a bad day and vice versa.

 I had tried going Gluten Free because other people with Hashimotos reported it helped. And it did. But here's why I'm pissed - my doctor couldn't really talk much about whether being GF is good or not AND being Gluten free is hard - my life right now is hard enough I don't need to add a strict diet to it too if there are other alternatives out there for me and damnit - I like Pizza!

 If there is another way for me to not have to suffer these symptoms all the time (another medication, other supplements, etc....) Then I'd like to try that because I personally find being Gluten Free to be a challenge and stressful. I just want to be able to find a doctor who can talk about other alternatives instead of me researching and trying things on my own.  For all I know - I could also be taking some sort of vitamin supplement and it will help my symptoms, but the lack of access to people with real knowledge is frustrating.

So, that's where I'll leave this post. I have a chronic illness, that even the experts can't explain too well and even the experts can't offer suggestions on how to make it better. I have to rely on OTHER people, websites, etc to get ideas on ways to manage my symptoms and it's frustrating.I am going to keep writing about it in hopes that other people find it and maybe we can help each other. I am going to keep writing about it because I like writing and I want people to know what's really going on with me.

The good thing is that not everyone with thyroid disease suffers like me. Some people can take their pill every day and they are fine and that's great - unfortunately - that's not the type of thyroid disease I got.
I will write more and break it down into different themes. My next post will be about the marathon that is finding a decent doctor who understands Thyroid disease and will help you treat it based on your symptoms and not your lab tests. If you have been there - you understand that it is frustrating and almost impossible. I will try to find some humor in it because if nothing else, laughing always helps.