Clearer Results....

I have to go in for more blood work.

 They're mailing me the lab slip. My liver levels were very high, and they think I may have gallstones. So, if my levels come back high again, they're gonna do an ultrasound. ..... mind you, they already stole my gallbladder. 

Also, I might have a weird adult growth hormone deficiency, so I have to go to Swedish at some point and they're gonna put an I've in each arm. One for fluids, the other for injecting me with incilin to severely drop my blood sugar levels. They'll be taking blood over 2 hrs and if the levels don't rise to a certain number, I have this deficiency.  If I have it... I'll have to start taking daily injections into my stomach for 8-12 weeks. Mind you needles terrify me. 

Oh. And they had to up my thyroid medication.

Here are all the levels and what the Doc had to say...

Ref. Range 9/27/2016 12:50 9/27/2016 13:20
SODIUM Latest Ref Range: 134-144 mmol/L 142
POTASSIUM Latest Ref Range: 3.5-5.2 mmol/L 4.2
CHLORIDE Latest Ref Range: 97-108 mmol/L 104
TOTAL CO2 Latest Ref Range: 18-29 mmol/L 24
ANION GAP Latest Ref Range: 5-19 mmol/L 14
UREA NITROGEN Latest Ref Range: 6-20 mg/dL 3 (L)
CREATININE Latest Ref Range: 0.57-1.00 mg/dL 0.73
EGFR Latest Ref Range: >59 mL/min 113.66
EGFR (BLACK) Latest Ref Range: >59 mL/min 131.73
GLUCOSE Latest Ref Range: 65-99 mg/dL 105 (H)
CALCIUM Latest Ref Range: 8.7-10.2 mg/dL 9.5
BILIRUBIN, TOTAL Latest Ref Range: 0.1-1.2 mg/dL  0.7
ALT (GPT) Latest Ref Range: 0-32 U/L 80 (H)
AST(GOT) Latest Ref Range: 0-40 U/L 59 (H)
ALK PTASE Latest Ref Range: 39-117 U/L 94
PROTEIN, TOTAL Latest Ref Range: 6.0-8.5 g/dL 7.1
ALBUMIN, S Latest Ref Range: 3.5-5.5 g/dL 4.4
GLOBULIN Latest Ref Range: 1.5-4.5 g/dL 2.7
A/G RATIO Latest Ref Range: 1.1-2.5  1.6
TSH Latest Ref Range: 0.450-4.500 uIU/mL 4.400
THYROXINE,FREE Latest Ref Range: 0.82-1.77 ng/dL  0.99
FSH,SERUM Latest Ref Range: See Notes mIU/mL 7.2  
PROLACTIN Latest Ref Range: 4.8-23.3 ng/mL 10.56
LH,SERUM Latest Ref Range: See Notes mIU/mL 6.3
CORTISOL Latest Ref Range: See Notes ug/dL 16.0  24.3 (H)
ACTH,INTACT Latest Ref Range: 7.2-63.3 pg/mL 38.3
IGF-1 (ENDO) Latest Ref Range: See Notes ng/mL 61
IGG QUANT Latest Ref Range: 700-1600 mg/dL 1107
IGG 1 Latest Ref Range: 422-1292 mg/dL 515
IGG 2 Latest Ref Range: 117-747 mg/dL 454
IGG 3 Latest Ref Range: 41-129 mg/dL 85
IGG 4 Latest Ref Range: 1-291 mg/dL 70

Amended assessment:
- Electrolytes are within normal limits. Can remain on DDAVP 0.1 mg at night plus 0.05-0.1 mg PRN.
- LFTs show raised AST and ALT, previous Hx of gallstones, recommend rpt LFTs and if AST and ALT still raised, will need US scan of liver and biliary tract.
- Free T4 low normal and TSH high normal, to increase dose of Levothyroxine to 125 mcg a day, script made.  
- Prolactin is within normal limits.
- IgG subclasses all normal.
- IGF-1 is low suggestive of adult GHD, recommend ITT to confirm adult GHD.
- ACTH and cortisol are normal = normal HPA axis. Can remain off Hydrocortisone.

Test Results and More

     As some of you may remember, back on the 27th of this month, I went to see my Endocrinologist and I told him of my complete and utter physical and mental exhaustion I have been experiencing lately. He seemed pretty concerned, and He decided to run a bunch of labs and a cortisol test, he also wants a copy of the MRI I get today.
     Over the last week or so, I have been getting lab results trickling into my online charts. Most of them are normal, but there's a few that are low and even more that are way to high. I wont lie, it has me very nervous.

So, on this lab result, the following are:
My Urea Nitrogen is low. I was a 3mg/dL when normal is 3-20mg/dL
Urea Nitrogen: The blood urea nitrogen  (BUN test) is primarily used, along with the creatinine test, to evaluate kidney function in a wide range of circumstances, to help diagnose kidney disease, and to monitor people with acute or chronic kidney dysfunction or failure (source was Lab Tests Online)

My ALT(GPT) was EXTREMELY high. I was 80U/L and normal is 0-32UL
MY AST (GOP) was also high, I was 59U/L and normal is 0-40UL
The ALT: Its usually used to detect liver injury. Its often in conjunction with the AST(mine was also high) to diagnose in liver disease. When the liver is damaged, ALT is released into the blood which makes it useful to test for early detection of liver damage. AST and ALT are considered to be 2 of the most important tests to detect liver injury, although ALT is more specific to the liver.

*Note* My sodium levels are always on the high end of everything because of the diabetes insipidus and how it causes dehydration.

 

My IFG-1 (ENDO) was super low. My value was 61 ng/mL and normal for my age is 87-368 237
IFG-1: Its an insulin-like growth factor. Since my values are low, its likely there is a GH deficiency or an insensitivity to GH. Reduced pituitary function could likely be caused from the pituitary tumor I had surgically removed. (trauma). Decreased levels may also be seen with anorexia, chronic kidney or liver disease.



So, over all... if you cannot tell yet, I am worried as all hell about the possibility of liver disease. I am still waiting for the phone call from my Endocrinologist.

I will post the results of my MRI within the next couple of weeks. I have an appointment on the 19th with my Neurologist.

Social Media Accounts

Feel free to follow me on any or all of the following!!!!!

Kittin831

Kittyqatz

Spoonie.Amber

Happy October

Happy 1st day of Halloween!!!

Halloween is the absolute best part of any year for me. I love the smells, the horror films, the creepy and the scary... And I can go out looking like shitty hit the fan, and no one looks twice at me. But the  again, it's so much fun to take the day to do scary mare up on my children,  friends, and myself...

It's the month of pumpkin spice everything, crisp air, Apple cider, pumpkin carving, black cats, sweaters, boots and slippers.... it makes so much less stress for this spoonie. Other than my 3 currently scheduled appointments, I feel this is going to be a good month.

Awareness Ribbons

What colors do you represent as your personal awareness ribbons??

I have the following::::

Orange for Multiple Sclerosis









Purple for Fibromyalgia

Grey for Diabetes Insipidus

  Zebra for Rare Diseases

Trip to Seattle

Today I took a hour andd a half long car ride (each way) to Seattle for yet another appointment with my endocrinologist. He upped my perscription for the desmoprison (for the diabetes inspidus).

He told me tht there is another young female that he has who possed the same symptoms with migrains as me, and had the excact same thing happen to her, and she is also diagnosed with IgG4.

He also sent me to the lab for 9 tests (10 vials of blood). He said he would call me with the results. I told him of all of my new symptoms I have been having, (extreme exhaustion day and night, physical and mental. the nausea, the electrolites, etc) and he seemed concerned. He also wants to see the MRI results for what I have coming up.

 My MRI will be on the 5th. It will be going to 3 of my doctors.



Its....

Its my 26th Birthday!!!!!!

Update time

So, I havent updated much, but not much health wise has happened. Except I am starting to think I am having an electorlite inbalance. Like, I am always nauseated and the only thing that makes me feel better is gatoraid.

However, I did take a family road trip with the girls and Shaun to visit my mom for a week earlier in the month. that was fantastic and very much needed. Car rides, and beer, and walks, and playing in the lake, and darts, and just all in all having fun relaxing. On our last night, we heard coyotees, and a large cat (thinking it was a bob cat). We also were able to see a metor shower, which was nice.

Next month I have an appointment with the Endo and I have to schedule another MRI (I hate the machine).... Also have an eye doctor appointment for Chloe and I as well...

Hey everyone

Happy 4th of July.

CT results

So, my endocrinologist in Seattle called me. He said everything looked great, except  (don't you just love when doctors start that way) I have a 5mm glass nodule in the middle of my right lung. He said not to worry about it, and he'll be keeping an eye on it.... guess what, I am worried. I mean... what if I have the beginning of lung cancer??? I am too young for this type of stress. Ohhh well, welcome to the life of a spoonie.

CT gone wrong

Today was my first time having a CT scan. Who would have thought I was allergic to the contrast. While and the Machine I was perfectly fine but when I finally got out of the machine and on the way to the car I vomited. I was sick for hours later. I even developed a bit of a rash on my leg and arms.... but, they called it a Mild reaction, and I'd be okay... I still feel like crap... and I'm worried about the results.

3 months Cigarette Free

After being stuck in the hospital for a week, I quit smoking. Today marks just over 3 months. I also saw my neurologist today. I just began my medication for MS. Gilenya. WHo else is on it? Has it helped you?

I have to go ssee my eye doctor like every 3 months, and she scheduled my MRIfor another 6 months out. She was super happy to hear I quit smoking. She is also letting me stop taking the toparimate I have been on for migraines.

Other than that, all is about the same as always Spoons are limited and Ihave to force myself to stay positive... But I am doing it.

Post Surgery Check Up

So, today I had my 6 week check up. All is looking good.

However, I have Diabetes Inspidus for keeps. I also have something uper dooper rare (Hey, I am officially a Zebra) called IGg4. They found it wehn they biopsied the stuff they pulled from my brain. I guess I am only 1 in like 40 people world wide. The endocrinologist said he wants to do a case study on me and publish it. He also wants me to go in for a CT in the next couple of months to see if Imight have it other places showing as masses or tumors or whatever. And the nuerosurgen said he wants me to have another MRI around October...

I will be returning to the offices in a few months... Hoping all stays well.

Holy Hells Bells!!

On january 28th, I returned to the Er again, of course, with my migraine. this time though, I already had orders approved by my nuerologist for a MRI, so they went ahead and did it. They found out that my cyst/tumor thingy had ruptured. They gave me deladin and morphen, and sent me down to Swedish Hospital in an amulance for emergency surgery. When I got to Swedish, they were incredibly confused, and it took until the 2nd at like 7pm before I even got the surgery. Yes, Brain surgery... Kinda scarey, but it was well worth it to be rid of the migraines and be off the morphen drip. They werent sure exactly what they removed according to Shaun. It was yelllow liquid stuff, not blood like they thought. They are assuming it was the insides and infection like stuff from the psuedo tumor. My nose had some full like tampon things, and oh shit fuck, it hurt like hell when they ripped them out of my nose 2 days later. I am now also diabetic (inspidius) because of whatever they did next to my pituitary... they claim it can go away in a few weeks, but it might be perminate. So, I have a nose that keeps bleeding, no taste, i cant breathe through my nose, Shaun has to keep my nose moist, no appititate, lots of new medications, pain killers, and I just want to sleep..... which shall be fun since I cant lay back, I have to stay sitting up right or else my head throbs from pressure. I have loads of limitations for the next 6-12 weeks, and I am just wanting this part of things to be done and over with....

I am starting to hate this

Extactly 3 days ago, I was where I am now.... miserable and in the ER... My migraine is back, andd just as strong as always. I just want to know whats wrong with me. I recieved so many different medications today, again, and its always the same story..... its the "migraine cocktail"

Follow up with doctor, and come back for worsening symportoms... Just figure out whats wrong with me already!!!

Another ER Visit

Another migraine having me in the complete dark and silent day means I am in the ER again for treatment and hope they figure this out...

The said to rest, no strenuous activity. No driving because they gave me seditives, contact my doctor tomorrow for a follow up {again}. Return if my migraine gets worse, and to continue to take my migrraine medications..... I just want them to figure out what is wrong with me....

Are you KIDDING me?!?!?!

So, today I had my appointment with an endocrinologist about my migraines and lactatiing. He diagnosed me with hyperprolactinemia stating that I am just a female. Mind you, I have been lactating since September, my child is almost 4, and I just randomly begin to lactate for no reason..... I dont believe it.

And as far as my migraines, which I am trying to figure out if it has something to do with the cyst/tumor thing, and he just blew me off. He did send me for a bunch more labs... so I guess we will see. He also wants me back in 3 months.

Embarassment

Hows this for an embarassing story....

For the last 2 or so days, I have been deaf, like I have lost 90% of hearing in both ears. I have taken hot showers, ued a syringe of hot water in my ears, tried everything I could think of to clean them out in case it was indeed just a wax build up. Nothing worked. So I went to the urgent care as per my nuerologists recomendation.... and low and behold, it was a wax build up. They cleaned my easrs out with peroxide and hot water, and I could hear the world again.... got it, invest in peroxide.

Update on my life...

After taking a week vacation to the complete other end of my state to visit my family, I have been worn out. I used all of my spoons, and I was beginning to feel like I was using next year's spoons... I ended up in the er 4 days after I got back because of crippling chronic migraines. They loaded me full of medications. Everything from a ton of steroids, to antiinflammatories, to anti nausea.... The steroids have had a horrible side effect causing me to lactate. (Been going on for 4 days now with no sign of slowing down or stopping.) They made me feel like a billion bucks.

The day after my ER, I had an appointment with my rheumatologist and my neurologist. The rheumatologist upped my gabapentin and prescribed a sleep aid... Which has been amazing. I finally slept a full night, and I had energy the next day. Only downfall is the really weird vivid dreams that give me anxiety attacks. But, a cigarette makes that all better. The neurologist prescribed me medication to release pressure in my brain to help prevent the migraine. And it also promotes weight loss. Which would be nice considering I've gained all the weight back I worked so hard to loose thanks to the chronic illnesses.

Another New Diagnosis...

Today I went and seen my Rheumatologist for the first time.

 

 

I was in the office for less than an hour. Told him of my family medical history, or well... what little bit I know. Told him of my symptoms and my pain, and that I am never not in pain. He did some poking and prodding and bending of my body... He gave me some answers.

 

 

First, he said that we will not diagnose me EDS type 3, however- it is still possible.

Next, he diagnosed me with Hypermobility Syndrome, he proceeded to go on to tell me that some people believe that they are one in the same thing- but he is still on the fence about it so he was just going to leave it at me being hyper mobile since my skin doesn't stretch much...

 

Lastly, he told me I have fibromyalgia and have me a formal diagnosis for it and he gave me a prescription to help the pain I experience. I will be returning to him in about 3 weeks for a follow up.

 

I am super happy that I am finally getting answers. I am happy that the doctors are finally listening to me, and believing me, and doing something about it. I am happy that even though nothing I am being diagnosed with is curable, it will not kill me on its own.

 

So guys, here is to another day.

 

Until next time,

Amber

 

 

P.S

If you know there is something wrong with your body, or your mind... don't give up the hunt for answers. Eventually someone will give them to you.