Welcome December! ... maybe.

The last time I posted about my health issues was a few months back.  I was actually thinking about splitting this into another blog strictly for writing about those, but I kind of stopped when thinking of a name for it.  Thought of a good one... and found out it was taken by someone who never updates their blog.  Damn.  So the idea is still on the table and it will probably happen.  Then maybe if I do that I will be motivated more to update both blogs, instead of a mishmash of information all on one.

Welcome December!  Time for the holidays!  I LOVE receiving & giving gifts, decorating, writing cards, baking, music, family, and friends!  I LOVE the snow and having a white Christmas!  I DISLIKE the anxiety that comes with it, the dark cloud that hovers over the shoppers and the rudeness of some of them, people who spend more they can afford, bad customer service because the rude people are rubbing off on others, driving in bad snow, and my own anxiety.  From the end of November to mid January I want to lock myself inside my home and hibernate until the holidays have ended and then emerge into a new year & new world.  Years ago, I wasn't like this.

Today I woke up with a panic attack.  On top of that an asthma attack.  They always seem to be worse in the morning, probably because my brain is trying to prepare me for the day.  It's probably telling me, "Oh, so you want to go to work and be surrounded by people, and talk to strangers on the phone who will not always be pleasant, and drive on the road with idiot drivers, and get dressed in clothes that are not as comfortable as your sweats, and wonder if your car battery is dead, and wonder if people around you can tell if you've been crying, and have to explain to people who aren't going through what you are going through (because they can sense you're off) that it's not as easy as they think to get over it and get better, and wonder how you are going to fit in stuff you need to do at home once you get home because you know you'll just be too exhausted, and most likely miss an important personal call from your doctor or a business, and have to take almost every minute of your free time to call said doctors or businesses because they never called you back or called you back when you couldn't answer, and hope you will even get a hold of them because you know you won't be able to by your last break, and realize you forgot some paperwork (because you always do) that you need to reference on that phone call that was either missed or never received, and just generally feel crappy because of all the shit that has built up over the last few days, no weeks, or months, NO... years!  Oh, HELL NO... NO NO NO NO NO!  I am going to randomly give you excruciating pain that will make you think you are going to die, or are in the middle of a heart attack.  Maybe I'll stop it after a few minutes, or a 1/2 hour, maybe longer.  Once it's over, maybe I'll bring it back at some unexpected time when you least expect it and are feeling fine.  In the mean time, worry about it coming back.  Plus the rest of the time you aren't in pain, I'll just exhaust the heck out of you!  On top of that I might also give you a migraine, asthma, and throw in a little (or a lot of) diarrhea."

Though I love this time of year, that dark cloud floats itself on over to me.  I haven't been diagnosed with SAD and don't think that's what I have.  I think it's safe to mention again that I never had these issues until I started showing signs of my failing thyroid.  Yet every little, teeny-tiny, not a huge deal, thing that everyone else can just shrug off builds up an up until my body says, "Fuck that!  I'm going to knock you out for a bit.  Or at least try to."

The recent stupid things that have just made it worse?  Let's see...

• Tried to place a cyber Monday order on a site for gifts because it was a pretty good deal & I was budgeting.  Put the stuff in my basket, went to check out, thought I created an account and it ended up never going through.
• Lady on the phone last week screamed at me, "YOU'RE GOING TO HELL YOU BITCH!" for something completely out of my control.  My response was a laugh (it just came out because her statement was so unexpected, though I felt bad for her) and then she hung up on me.
• Waiting in line at the doc office for 5 min for them to finish up with someone, and sign advises to stand back until called, so I was waiting and my friend sent me a text so I was reading it.  A guy behind me walks right up to the window without being called in which I immediately stated I was next.  Then he makes some off comment about why people don't text and drive in which I state I wasn't driving nor moving and how it's also rude to cut people off while driving & to read the sign posted, like driving.  He then continues to "ride my ass" while I'm trying to check out of the office.  I decide to make it a little longer by asking for documents to be printed off. (I really did need them anyway.)  He makes some other off comment so I shoot him a nasty glance, and then advises he's just talking to himself.  Mind you this guy was probably in his late 50's and was making the checkout longer by being this way.  When I was done I called him a jerk to his face and left.  
• Gift I ordered for my friend came broken.
• Credit card denied a big order and called me about it yesterday around 6pm. Then I wake up this morning to find ANOTHER alert after 11pm from them when I TOLD them I was placing more orders & through who.
• I'm in the right lane of 2 lanes of traffic and this old guy turns into our traffic from a side street and then instead of staying in the left lane cuts right in front of me when I'm going 45mph and he's just merging so I have to slam on my breaks and I had paperwork for my doctor appointment go all over the place in my car.
• I had another sinus infection and was put on a 3rd antibiotic of the year.
• Right at the end of my 3rd antibiotic I got the flu even, though I had my flu shot, and was put on my 4th antibiotic of the year.
• I've been trying to quickly adjust my med schedule to take it earlier in order to wake up earlier because my shift is supposed to be changing at work this weekend.  Then I was told it is staying the same until February.  Plus I don't think adjusting the time is helping how I feel overall.
• LTD is still denying my appeal (it has been over a year now that I am fighting this) because, apparently, at the point I'm at now it has to be done a different way where I now need to compile everything and send it in myself instead of send in the appeal and have my doctors send their information in separately.  So I had a huge packet of paperwork sent in with new information (by me but not from my doctors, I stated that would come separately from them) and they sent it all back saying there wasn't any new information in it. Then it took over a week for the guy to call me back giving me the specifics on how it had to be done & why it was all sent back. Now I have to contact all these doctors back... again... and have them send the info right to me. Plus request a copy of all the stuff they have on file already to make sure I'm not sending duplicates.
• Parents are messaging me asking what I ordered from my cell phone service because they got something saying I ordered something from them.  I see this as soon as I wake up so it puts a huge stress on me so I call them.  I ask them what the date is on it because I did ask the company to send me a receipt from way back when I initially purchased my phone as I never received it in the 1st place.  They had already e-mailed it to my personal e-mail.  It was that receipt.
• Knew this stress was getting to me so tried to make an appointment with my doc office to have a med adjustment & they couldn't get me in until next Tuesday.  Thought I would miss work so I rescheduled for my day off on Thursday and until then I am just going to self-medicate myself and hope that it keeps me stable so I can go back to work tomorrow and be fine until I can go in then.
• Had to call another doctor office because I asked them for a follow up appointment and they said they'd call me back and it was 2 weeks since then.
• Had my endocrinologist say I'm now pre-diabetic and they now want to test me for that though I'm losing weight and eating better.
• Had my endocrinologist tell me, "Good news! Your thyroid levels are in range." When I looked at my levels and my TSH was 0.42.  The "standard" range is 0.40-4.50.  Why am I on/off hyperthyroid symptomatic then?  Not "good enough" news for me.

Of course, there's other things I just can't think of.  And a lot of these things are petty, or work/have worked themselves out,but my brain and body just wants to shut down now once it gets to a certain point.

Thyroid issues cause the best of both worlds, mental and physical issues.  Huffington Post posted a short article with the cartoon below (click on it to go to the article) that asks the question, "What if people treated physical illness like mental illness?" It links to the CDC where that states, "Only 25% of adults with mental health symptoms believed that people are caring and sympathetic to persons with mental illness."  I'm sorry to say that I don't believe the majority of people are caring or sympathetic.  Mostly because I don't think people understand the vast majority of symptoms and diagnosis that are involved, so the majority of people think those with mental illnesses are just plain bat shit crazy.  There's a LOT more to it.

I don't really know where I'm trying to go with this post.  I just felt like writing and complaining, and being a basket case today, while curled up under a blanket on my couch, re-watching the season premier of Mob Wives, napping the rest of the time, and wishing I could have the strength to pull myself together and make it out the door for a productive day.  Maybe that day will be tomorrow.

Panic attacks and anxiety with thyroid problems.

When you aren't feeling well you should always entrust in your doctors for advice and treatment.  At least that's what I thought.  At the end of this month it will have been a year since my total thyroidectomy and I am still left to wonder if it was the right thing to do.

Should I still be having problems a year later?  Sure the surgery helped me with my Graves' Disease but now I feel like there's a never ending battle with hypothyroidism, or hyperthyroidism if I'm getting too much medication.  None of my other hormones were ever checked until after the surgery, 6 months later, and on my 3rd endocrinologist.  Could it initially have been an adrenal or pituitary gland problem?  Was there something else causing my thyroid to go haywire?  I may never know.

I posted previously that the last time my numbers were checked they all came back in the "normal" range. Thyroid, adrenal, pituitary, sex hormones... everything.  Even though I still feel anything but normal.  Lately, every morning I wake up at 6am and I'm shaking.  I take my medication and fall back asleep for another hour or so and then the shakes are (usually) gone by the time I am ready to get up.  Another odd thing I had yet to mention was that sometimes, right after I wake I get the sensation my vision is pulsating.  Reading up on all of this it could be the physical form of my anxiety coming out.

So this brings me to what I initially wanted to write about which are panic attacks.

I did have a terrible panic attack a few days ago.  I think I have mentioned before I am currently taking 5mg of Lexapro.  I was on 10mg but I was feeling worse on the higher dose and having regular panic attacks at that level.  Those of you who are familiar with medications like this may laugh considering 10mg is really a starter dose.  I've been on and off so many different types of these medications and I can say they have helped me remain calm when I was in stressful situations, but they have not helped me at all with the anxiety and depression caused by my thyroid condition.

Before I even knew I was having issues with my thyroid I started having panic attacks.  There was a lot of stress in my life between me being ill, my job, and my family.  Then one day they started.  Immense, immobilizing pain that would radiate throughout my upper chest and arms, almost like a burning and crushing sensation.  Then nausea, headaches, neck and arm pain usually followed along with a crash.  After the pain was over and done with my body becomes extremely exhausted and I could sleep for hours because the fatigue was so great. The attacks would last from minutes, to hours, and the worst of them lasted a few days.

When I 1st started getting them it was after my gallbladder surgery and after I had returned to work.  Like clockwork, a few hours after I would get into work they would start.  One a day, around the same time every day.  "Was it because of the surgery or what I was eating for breakfast?" I wondered.  I went to my primary doctor and gallbladder surgeon, was told me to see a GI doctor, was prescribed amitriptyline, had a endoscopy done and was told I had general dyspepsia.  Though when describing the pain, my GI doctor had even noted that where I was describing that the pain was and how it traveled, it didn't seem to be a GI issue.  The attacks got worse and worse and the medication was upped and upped and upped.  A few times they got so bad and lasted so long I went to the ER, only to be told that I'm absolutely fine.  All I could think of was, "No, I'm most definitely NOT!"  I stopped the medication and stopped seeing the GI doctor.

People joke about looking up stuff on the internet about your health.  If you're a hypochondriac I could understand as every symptom you have seems to lead to some sort of cancer, especially on the WebMD symptom checker.  Though I remember my primary doctor had mentioned something about anxiety a while back.  I searched pain with anxiety and this article came up.  I read it and thought, "OMG, this is EXACTLY what I am going through!"

I started seeing a therapist and a psychiatrist.  Medication after medication after medication I tried.  Terrible side effects of the medications along with the panic attacks persisting.  It caused me to believe that maybe I wasn't having panic attacks and something even more terrible was wrong with me.  Who would have known that I was partially correct?

Another year later & I was diagnosed with Graves' Disease.  The 1st endocrinologist I saw was not very helpful when I had questions and was one of those, "I'm the professional.  Don't question what I say and just do as told," type of doctors.  Now that I knew I had a life threatening thyroid condition and was most likely going to need treatment for the rest of my life, I had a million questions that I wanted answers to.  So I started seeking out others online who were going through what I was.  Graves' Disease & Thyroid Foundation has a forum where I spoke with many people going through what I was, learned a lot about my condition, and found resources to help me along my journey to recovery.  I also learned, from the help of others, that anxiety and panic disorders can go hand in hand with thyroid conditions.

So when that endocrinologist told me that my anxiety had nothing to do with the thyroid condition or medication I was on, and that I just needed to be thrown on an anti-anxiety medication, he lost my business.  Onto the new endocrinologist who agreed with me it could have to do with the condition, but suggested the medication may just help.

My thoughts on this were, if they didn't help before, how could they help now?  I want to fix the main problem 1st and refused additional medication.  I still had painful panic attacks up until the day of the thyroidectomy.  Then immediately after the surgery, the panic attacks disappeared.

I still had ongoing anxiety issues because of the healing process after.  Being extremely hypothyroid, the complications with the meds and blood levels because of that, gaining weight, having forms being filled out every month for disability and having doctors telling me, "Let's give it another month," month after month before they would release me back to work.  Then when I was ready to go back to work I was anxious about having to go through training process again and starting a new shift.  This is when I started the Lexapro to help with the anxiety I was feeling.  After starting that, the panic attacks started again, though mildly, when my thyroid levels were on the hyperthyroid side.

Please doctor, tell me again how these don't go hand in hand?  I can also tell you, with my medical history, I NEVER had issues with anxiety nor any panic attacks until 1-2 years before being diagnosed with thyroid issues.  Again, please doctor, tell me again how these don't go hand in hand?

I will see my endocrinologist tomorrow morning.  I can already anticipate how the conversation will go.  Him saying, "You are fine," and me saying, "No, not completely.  Let me show you a list of my current problems."

I also mentioned the terrible sore throat I had last month.  Well, my sore throat is back in a mild form so the gargling of salt water helped a little this morning.  I feel feverish though my temp was at 98.1.  I'll write a whole other post sometime about the terrible brain fog I have been having lately.  How can I be fine if my body feels like it's shutting down?  Maybe I'll have some answers tomorrow and maybe not.  I will get through this, though it's a bitch trying to.

For those of you who just don't get it...

The last time my friend was in town staying at her mother's, I went there before we went to do some shopping & shenanigans.  Her mom's like a 2nd mom to me, always making me eat and making sure I'm doing well.  She knows about my thyroidectomy and my struggle to get better.  This was right after I learned my TSH had shot up to 9, and though I'm still way better than I was in the past, immediately after being asked how I was doing, I responded, "Not too well," explaining how my level just spiked and how I have no clue why.

The conversation then took an argumentative turn.  She told me I was relying too much on my doctors & how I needed to stop all my medication and then she kept trying to push a progesterone cream on me because it was "all natural" and she "knew what I was going through."  Mind you she thinks I'm going through early menopause (thyroid disease vs. menopause) and has never been treated for a thyroid condition.  I explained how yes, my sex hormone levels could have something to do with my condition, but the hot flashes I was having after my surgery had since gone away, many months ago, and my periods are back on track.  I also explained how I made my new doctor check those hormone levels and they came back normal.  The last thing I need to do is take a supplement and throw the normal levels off causing more problems for me.  I told her how, due to my TSH being at 9, that made me understand why I was currently feeling like crap, and how I upped my dose of thyroid medication and we're also now looking into my adrenal gland function.  I tried to tell her how I cannot just stop taking my thyroid medication, how it could kill me if I did, and she just wouldn't accept it.

I broke down in tears.

I've had a few people ask me about stopping my medication to see if that would help, or tell me that maybe once I feel better I should stop taking them and I always try and explain to them how I can't.  Some, I think, get it.  Some, I think, act like they get it and then just drop the subject because they probably think I will just not listen to what they are trying to say anyway.  Then there are those that try and argue with me.  Not even to stop taking the medication permanently, but they cannot understand why I will not even try temporarily.  I started taking Armour back in October 2013 and, though I stated before how I am feeling better overall, my levels went from low, to normal, to low, to high! I still haven't even found a good dosing to keep me level yet!

So, the other day, Mary Shomon had posted on her Facebook page something that I feel EVERYONE needs to read.  If you just don't get it, maybe this will help.

"Type 1 Diabetics (an autoimmune disease) REQUIRE insulin to survive. Lack of insulin - a crucial hormone - will kill them. So far, there's no "natural" non-prescription source of insulin, no herbs, no vitamins, or supplements that can provide them with the insulin their bodies requires to survive. They require prescription insulin to live.

Human beings MUST HAVE THYROID HORMONE TO SURVIVE. Over time, a lack of thyroid hormone will eventually be fatal. There is no trusted "natural" non-prescription source of thyroid hormone, and no herbs, no vitamins, or supplements that provide the actual thyroid hormone our bodies require to survive.

While in a subset of cases, borderline thyroid problems can be caused by iodine deficiency/excess, goitrogenic foods, gluten intolerance, inflammatory diet, etc. -- most people who are hypothyroid are already looking at damage to the gland, which means the gland is unlikely to produce enough thyroid hormone, and may not be "fixable" or able to improve its hormone output. And for those whose gland is surgically removed or radiated (RAI) - they have little to no thyroid function at all, meaning no way to produce thyroid hormone.

I'm sharing this, because I'm concerned when I see people say that most of us shouldn't take thyroid meds, or "I don't need them, no big deal" etc.

If you read a success story -- or see marketing pitches -- about "I'm not taking any thyroid meds and I'm doing fine by doing x, y, z" or taking this or that supplement, that's wonderful for those folks, and there's no doubt that for a subset of people, food/diet/supplements may be able to put their thyroid into a normal range and/or resolve their symptoms.

But if you have had thyroidectomy/surgery to remove the gland, if you have long-standing hashimoto's with atrophy or destruction of the thyroid gland, if you have congenital hypothyroidism, if your gland has shrunk, etc. then all the diet/nutrition/supplements in the world are not going to make a missing or entirely dead organ to grow back or start working again. Those things can help with residual symptoms, definitely, and be the difference between feeling so-so and feeling great.

There is a profound difference between someone with mild borderline hypothyroidism and a TSH of 6 deciding not to take meds, and someone who has no thyroid going off meds, which can be fatal. I also want to caution you that in 20 years, I have heard from dozens of thyroid patients who said they went off their prescribed meds because they didn't want to take them, or they wanted to do it "naturally" and thought they were doing well, until they started to notice that they had gained weight, cholesterol shot through the roof, they didn't realize that miscarriages were connected, etc.

In one case, a woman who had no thyroid decided she didn't want to take her meds -- and it ended up where she couldn't drive, couldn't work, slept 20 hours a day, was so puffy she could barely move, her heart rate had dropped to about 40 beats per minute, and she was so addled she didn't even realize that she headed into a myxedema coma, and was slowly dying...she just laid in bed sleeping most of the time. Thankfully a friend recognized what was going on -- she hadn't taken her meds in a year at that point -- and if the friend didn't haul her deliberately into the ER as an emergency, where they found she had a TSH over 400, they said she was about 2 weeks away from death from organ shutdown.

Taking thyroid hormone is NOT like taking a Tylenol.... it is replacing a crucial hormone that we require to live. I just want to make sure that folks understand that this isn't a do-it-yourself casual health issue that's no biggie -- it can have some serious repercussions, it can cause loss of pregnancies, people have been wrongly institutionalized at mental hospitals, and it can even be fatal if we don't get the right treatment."

If you know someone with an auto-immune disease, unless we ask you, please do not give us advice.  We will be more than happy to answer any questions you have to the best of our ability.  We may not always know the answers as many of us still have many of our own unanswered questions and we are still learning ourselves.  The best thing you can do is listen, educate yourselves, try to understand, and support us!

~

You can follow Mary through the links below!
Facebook: https://www.facebook.com/thyroidsupport/
Twitter: http://twitter.com/ThyroidMary
http://www.thyroidcoaching.com/
http://www.thyroid-info.com/
http://thyroid.about.com/