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Nov 10, 2009 - 6 comments
Tags:

low calcium

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heat intolerance

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Depression

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Allergies

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Thyroid

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addison's

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adrenal fatigue

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adreanl insufficiency



'Well now then there', to quote a phrase by James Dean. I feel that sums it up for me right now! I had promised a while back to continue writing in my journals of my trials and tribulations of my wonderful, magical journey of life. Alas, I have to hang my head in shame and say, "Ooooops." Guess other things got in the way!
I find my concentration levels, not to mention my exhaustion levels have plummeted like a Mafia mob's concreted shoed enemy into the abyss. I have my moments of flinging my arms about wildly trying to get attention but often find it futile as I fall deeper into the blackness.
  Well, that sounds all rather morbid and debilitating, doesn't it!? It was not meant to be that way. It is meant to be showing that, yet again, my body is doing what my body does best; fail. It is failing and I am not enjoying this trip at all and want to get off. I keep telling the driver that it really is my stop and would it be ok if it could slow down to a speed where I escape out the door and thus not injure myself? But my driver says, "No, bugger off! You are a passenger in this vehicle so sit tight, shut up and enjoy the views" I kindly explain to the driver that it was never my intent to partake of this alleged road trip, but am silenced with a look that is pure evil.
  
  MY USA TRIP.
Before I left the Land of Oz I was not feeling so confident I could do the trip at all. I wanted to desperately. What with a teenage son being obnoxiously abusive, and a friend with Asperger's pushing all my buttons the wrong way, and the stress levels of a brain surgeon operating in an earthquake, I tell you I needed that trip.
  
Body was already tired. Brain was even more so. I upped my thyroid medication to a healthy dose of 114.3mcgs. The previous dose of 100mcgs made me hypo, hair loss, depression, heavy periods, cold intolerance etc etc etc same old same old.....The 114.3mcgs was a dose earlier in the year I had tolerated. Not well, but tolerated nonetheless. What's a few heart palpitations amongst friends, hey? Rather that than bleeding like a stuck pig every month! The Reverse T3 test ( this shows if the T4 medication is actually being converted into a usable T3) was high. But of no concern to my GP. Hence why I upped the dose to 114.3mcgs. Figured it can't hurt! All the while knowing that upping the dose will only make the Free T3 worse if I am unable to convert the T4. Our intelligent medicos here in the wonderful land of kangaroos and Holden Cars never, and I repeat never understand the correlation of this conversion (especially when you have had your thyroid gland removed!) and hence never offer any replacement T3.

So having done this little 'trick' to tide me through my 9 week sojourn to the Wild West of USA, I was content to know what I was in for. The medication kicked in half way through my adventures. I knew this, not because I felt more alert, grew hair in abundance and my period be so light I could swim without a tampon. OH no! that would be a miracle if this were the truth. I knew it kicked in by the fact I nearly rolled down a steep embankment on Pilot Butte in Bend Oregon on a warm and muggy day in late summer with heart palpitations that were making a seismograph set off in Japan! Man! They were BAD! I stopped, I sat, I panted, I waited, I panicked, I calmed, I worried, I told my friends a lie and said I was ok. DUMB move. I ought to have waved my arms about shouting, "Help! I am dying here!" But as usual my dumb logic of, It's only coz I am slightly over medicating myself, and it will pass.
  
So, onward with my journey. I went on a 12 day road trip early in the piece. Was wonderful! I have pics of some of the thrills I had on my profile. The elk which came to my tent is an event I am very blessed to say I had. Though look closely at my face and I am so exhausted. I had actually been crying before my man told me the elk was outside the tent. Why was I crying?Here I was in beautiful Canada with the soul mate I adore and a wonderful adventure I was having, only to be bawling my eyes like a baby? Coz I was exhausted, bone shattering, let the place burn and I won't care type of exhaustion. I knew at 7.30am what we were going to be doing that day. A hike to the top of the mountain (ok half of it was by cable car!) drive a few hours, stop look at scenery and what ever, then camp and have dinner and go to bed. Good life, huh? Not for me. Even getting OUT of my sleeping bag was more than I could bear. The very thought of getting up exhausted me!
  I
have always been an active person. I mean by active, I never ran a marathon, but I was always on the go. Two hours at the gym, followed by a swim, then a massive long walk, then dance the night away and still be up in time for work the next day to go-go-go! I never shirked hard work, shovelling dirt, stripping old wood off houses, pushing a toddler in a pram with 20 kilos (40+ pounds) of groceries back home all up hill,  those kind of things made me feel alive and good. Never blinked an eyelid at any of it, and often all of it in the same afternoon! But now? Now I can't even unzip my sleeping bag to get up to enjoy this wonderful event of a wild animal choosing me to say Hello to.
  I never showed my man my tears. Always used the excuse of things like, " I think I have an allergy to something near here" He'd say, "Yeah must be the......" (whatever it was at the time)  He has allergies to the pollen from pine trees so always understood the red eyes I had. He started to get a little teasing to me about my constant feeling the cold at night time though. I was freezing at night. Now I know I have lost a lot of weight but this was ridiculous to feel so cold. Undies, t-shirt, zip up jacket, long pants, socks and a winter hat and thick gloves, all encased in a heavy duty sleeping bag, with doona on top. My man used to laugh at me. Till one night I woke up in tears, crying, I can't sleep I am so cold! He looked stunned,..."It's like 65 degrees outside, How can you be so cold? "   (Around 23c for my metric friends!) I said, " I don't know!!!! I just am!" Then to help ease HIS distressed look (why do I always care more for others than myself?)  I said," OH I know, my period is due any day. I always get the chills the. You know women always lose body temperature right before their periods." Luckily for me, my man is scientific minded and accepted this excuse quite happily, as he tucked his own sleeping bag around my shoulders and snuggled in said," There, now you will sleep better." And I did.
    
After many weeks of hiking, dancing, swimming, whatevering, I felt weepy more each day. One particular day, toward the end of my  stay in Bend Oregon, I was in the pool doing my usual Lead Underpants Swimming Routine, when I just stopped mid-lap looked around and cried. No one was about. It was too cold for most people now to go to the yet to be covered outdoor pool. There was the light sprinkle of the day before snow, starting to melt on the grassy verge, there was a magnificent sunset to my left, the steam from the now heated pool rising like a pot of boiling soup. My man was on the other side of the divided off pool, doing his million and ten laps, blissfully unaware of my dilemma. My side was totally empty of anyone except me. The chilled off, exhausted woman who could no more do a stroke of a swim than fly to Mars. It was then it hit me. What the heck was I doing? Why was I lying to myself that I could still swim 20 laps with ease and grace? My man and I had arranged to go to a benefit ball immediately after out routine swim. I felt so alone. I just could not do it tonight. The other times we had done our swims then gone onto the social dancing then home late most evenings was becoming, for me a nightmare. How could I tell him I just wanted to go to sleep? How could I survive another 3 hours of physical exertion?Don't get me wrong, it wasn't that I was just doing it to please him and suddenly realised that I don't want it anymore. NO, it was how the heck do I get out of this pool without collapsing?!

  I decided; enough was enough! I would order the Saliva and Urine test which I can not get back in Australia. See if I can PROVE beyond doubt that what I had suspected all these years was actually happening to me. In Australia you must have a doctor's order to get any pathology done. In USA it is far easier for a patient to get their own labs done. So I took advantage of this little loophole and ordered a $385 test for Cortisol, DHEA (adrenal hormones) and many other brain chemicals. Now I must digress and inform you that back earlier this year I had seen an endocrinologist who had ordered a 24 hour urine collection for catecholamines. This test was done on a 45C (110F) day and I was told NOT to refrigerate it. Next day I was asked did I refrigerate it? I said No, so of course it was my fault the results were "normal" Grrrrrr. Naturally the endo assumed all was well and patted me on the head and said have a nice life. (so to speak!) This did NOT go down well with me at all.

Period came early yet again. Heavy as too. So the 2nd road trip was no longer a middle of the night rush to set up the tent and collapse into it asleep, as more of a try to find a motel which doesn't mind me going to the bathroom a million times a night to change my pads. This meant I could not do the test. I had to wait a week till my never ending period settled enough. This event came two days prior to my departure from USA to go back home. Said test was duly collected, labelled, frozen then shipped off the next day. One day left to go. No time to find out the results let alone find out what the lab recommended to do about them if they should be abnormal results.

  Got those results just a week ago. I have been home now for two weeks. Feeling worse and worse with each day. How do I begin to describe hell? The headache that will come, followed by the increasing horrible nausea, then the diahorrea. This does not happen every day. Just most days. The fact that I can no longer predict when the nausea will come leads to some interesting and startling looks by me as I realise I am about to perchance; upchuck.Not to mention the interesting and startling looks from others as I stop mid-sentence, go green and then vague out as I try to figure out if upchucking here and now is going to happen. The back ache I get often now lets me know I am in for a lovely week or so of exhaustion with nausea etc The pattern has become obvious to me now. I used to dismiss it as sleeping funny, or digging too much in the garden. Till I realised that I do nothing extraordinary anymore, than sitting at the computer most of the day.

  The craving for salt is ridiculous. Used to be that I could see it was only around my period time I wanted salty things. Now it is every day. Has been for at least a year. I can look back and see when I was younger I craved salt too. Especially in the heat.

  So I got my results back. I will, if I get a chance to, scan them in and show you properly. My morning cortisol was 4.1 instead of being up near 7. My evening cortisol was 3 instead of being under 1. My body is low in the morning instead of rising with the rooster and greeting the day with sunshine and big smiles. I am rising and thinking if the sunshines anywhere near me I will deck it! In the evening I am starting to fire up! Bring it on! Let's boogie baby! But even saying that, it only lasts less than an hour and then I crash again. I love that hour. It's when I do all I need to catch up on from my inability to function normally part of the day. Like right now. Else all you'd be getting is ................................................................as I konk out next to the keyboard.

Saw my doctor today. Told him of the heat intolerance I have right now. It is average 35c ( mid 90's F) in early November. Most unusual. The heat in November I mean! Told him of the exhaustion, the nausea, the dizziness, the exahustion, the craving salt, the exhaustion, the cold intolerance, the exhaustion, the moodiness....oh did I mention the exhaustion? He was telling me that my last labs were great ( I take a million and ten tablets a day to counteract anemia, low calcium and low Vit D amongst others) I then gave him the US lab results and he was startled. (No I was not about to upchuck!) My serotonin, instead of being up there and shouting at healthy 125-175 is a piddly little itty bitty 30.7  My epinephrine and norepinephhrine are piddly too. I pointed out my DHEA is at least a cheerleader in this game at a whopping 705.3 ( I ought to be in the stand watching the game at at least 200-400) He studied the cortisol levels and statedd, 'Well, at least they are good!" I am thinking....D'oh, what??? The it occured to me. I said, "They are for day time, not night time" He looked again...."Oh! Then that is not good. You need to go back to your endocrinologist as soon as possible" I tried to make him understand that the endo has a five month wait for appointments (which later I verified by calling and asking for an appointment, Feb 2010 is the next available...forget it, I will be dead by then!)

Lovely GP who is so gentle, meek and mild, suggested that I MUST get my serotonin levels up IMMEDIATELY. Why? I don't feel depressed. Sure I feel weepy whenever someone looks at me sideways and stress turns me into a bubbling heap. But depressed? No. I have been there before and this ain't it. This is WEIRD! Kind of nice to have a big sooky spell. Kind of cathartic and healing. But my brain chemicals are showing low low low, so let's get them up and cheery again, shall we!

Has anyone reading this (and I do hope by now you have stayed with me on this arduous journey.)figured out my symptoms yet? Has anyone who has known me for years seen the signs? I know what they are. I am fearful of them. It is not just a lack of thyroid medication, or a need to get out in the fresh air more often, relax and take yoga class, pat the dog more often, tell son to pee off, or anything else so called stress relieving. I have adrenal insufficiency/failure/Addison's call it what you will. But I am fading and I do not know what it will take for them to sit down and put the singular pieces of my medical history together and realise I just need a simple dose of cortisone to keep being alive. Simple?  To me it is.


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by Me967, Nov 10, 2009
Aww.  I feel for you my dear friend.  What's scary to me, is that I can relate to everything you are saying all to well.
  
That is just insane having to wait that long.  

And yes doctors everywhere are great at saying it's just you are being stressed or depressed.  It makes me VERY angry.  I would rather have them say they just don't know.  Though mine actually told me; I was a ticking time bomb and whatever was causing it just had to bloom.  LOL  At the time was very mad thinking I would wilt before I bloomed.

Is there any towns nearby that you could travel to in order to get in quicker?  

I'm sorry that you are feeling so bad.  I'm sorry for my ignorance in not knowing what it could be.  Will say a prayer for you though and I hope maybe someone will cancel their appointment or something so that you can get in quicker.  Also hope others will read this.

((((HUGS ALWAYS))))

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by TrudieC, Nov 10, 2009
Keeping you in my thoughts and prayers.  So frustrating!  Can you get a 2nd opinion?

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by peggy64, Nov 10, 2009
I can totally relate. And the said thing is, this seems to be a lone journey, as drs do not want to participate in healing us of this problem, just pat us on the head, take an antidepressant and go home. I don't need an antidepressant. I need something to heal these adrenals and this contrary thyroid. The problem is that all the glands putter down to almost non existant pumping of those necessary to life hormones.

I don't know what to do.

At least you could get out of the house, and take a trip. That is a blessing, and I am so happy for you. New surroundings probably helped alot.

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by Barb135, Nov 10, 2009
Why is that doctors the world over, seem to have SO much trouble looking "outside the box"??  Although, I have a totally different "condition" right now, I, too have my symptoms -- mainly fatigue, exhaustion, shortness of breath -- and the "nice doctor" pats me on the head and wonders if I'm suffering from "anxiety" --------- say, what????

I do hope you get the attention you so desperately need.  I've been through that exhaustion in which you want nothing more than to just collapse and not get up........

Praying for you ((hugs))

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by nervousnancy2009, Nov 10, 2009
Reading your problems make mine seem trivial! I really feel for you! Can you find another endo? My endo is still 40 miles away, which really not bad but he is the same as yours booked solid. Unless, it is an urgent case and they will accommodate you to get in sooner. That’s why with your problems I don’t understand why they would not want to fit you in some how??? That really erks me! Some doctors just treat us like cattle herds! Next…

Are you perchance a famous Arthur? You sure write like one. I love reading your journeys it not only helps me but also entertaining. You can still find a little humor in your complicated and serious problems. I really think you should write a book 

Do you think this could be linked to not having a thyroid? Since adrenal glands are part of the endocrine system just like the thyroid? Wonder if there is a connection there?

I actually know somebody with Addison’s and they did have some problems. Now, she feels great is back to work full-time. I do believe she is on cortisone that she takes daily. I would have to ask her for sure about that. Next time I see her, I’ll ask her some questions.

Thinking of you,
Stacey


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by redheadaussie, Nov 13, 2009
Thanks guys for your support!
Sadly my endo is a 45 minute drive from where I live in my little country town. None nearer. Any others are even further away! I don't drive far these days due to the fact I just feel like I want to lie down all the time. Even driving to the local shops and back is draining.
   I keep pushing myself. I keep doing 'normal' things but it is such a chore. I feel lazy and weak. I am always a hard worker and I want to get on! But not on the next ambulance heading to hospital!
  My doctor has given me some lovely happy pills which I really did not want to take but figured if my serotonin is THAT low then maybe I ought to give it a go. At least prove to him that in the past that they have not worked. ( I love being an naughty told-you-so patient!)

No, Stacey, I am not a famous author but I do intend to be! I am so pleased I am helping people through my words. It is what inspires me to keep writing. I love to entertain people at the same time as helping them. I have been writing for a long time now and have had some success with some stories published. It is my aim as I get better to write 3 novels. One on my illness and how it was misdiagnosed. One on my other ability, and one on my other life! Cryptic I know!

  I see my doctor again next week and will let him know about the endo being so booked up and I may even kick his butt and get him to call the endo for a more urgent appointment.

Aaaah! Life! Such a fun and wondrous thing! I am always amused at what challenges are thrown at us and how we deal with them! Me I think I will go out and eat worms....tofu ones of course, I don't eat red meat! Hee hee

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