Blogged Down

Living with my new HMO

Yeayeawendy — Sat, 24 Jan 2009 02:38:22 GMT

I wanted to give everyone an update on life with my new health insurance policy under Kaiser Permanente. I was very hesitant about this "forced switch" to an HMO - but so far so good.

I was able to keep both my general practictioner, endocronologist, and neurologist. I won't be able to keep the same general surgeon, but hopefully I won't need one too often!

The reall great news is that my prescription coverage has gotten much much much better! Back in November, I was prescribed Amatiza for IBS caused by central hypothyroidism. At that time, I had Blue Cross/ Blue Shield. I dropped the prescription off at Rite Aid and came back to pick it up later. When I got to the drive-thru window, the lady told me that BC/BS only covered $20 and my portion of the bill was $225. I simply could not afford it and had to drive away.

Now that I'm on Kaiser, all my doc has to do is write "medically necessary" on the script and the pills are only $35 for a whole month's dosage. Now, here's the great part ----- if I do a mail order, its only $35 for THREE months! That's $750 worth of medication for $35!!! My Synthroid is the same, as long as it says "brand necessary" on the prescription, it is only $35 for 3 months. With BC/BS, it was $48 for 3 months. Not as great of a difference as with the Amatiza, but still a substantial savings when both are combined!

I have had to learn how to work with a referral system, but since I don't have to start over with a new general practioner, it wasn't hard at all to get my referrals. I will be going to my neurologist with my referral soon.

So, thats my update! I've started to lose a little bit of weight, feeling a little better and look forward to better days!

What my doc doesn't want to say and I don't want to ask

Yeayeawendy — Fri, 12 Dec 2008 07:22:07 GMT

My recent visits to my endocronologist have been a little uncomfortable for some big reasons. The 100 mcg of Synthroid that I take daily is helping me to stay awake, but many of the other symptoms have not been resolved. Don't get me wrong, staying awake is fantastic, but I'm beginning to think that I may have come for the hormones and will end up staying for the tumor.

Last week, I had high blood pressure for the first time in my life. That, in combination with a 2 day menstrual cycle made me very nervous about what is going on with my body. For the constipation, the doc prescribed Amatiza, but its $227 a month with insurance and I just couldn't see ponying up that kind of money for something I wasn't sure about.

For the last couple of visits, my doc has been asking me some very strange questions. He keeps asking me if I'm nauseous and I always say no. Constipated - yes. Nauseous - no. The constipation that seemed to be gettinb better with the Synthroid stopped getting better. I assume that is because some hormones would help anything for a tiny bit of time? He also asks me if I'm dizzy. Not really...but I guess I do have some bouts from time to time with temporary dizziness. Stop that! No blonde jokes! I never looked up any symptoms for a tumor because I thought that maybe he would say something when he thought it was time to get an MRI. I'm sure that he will - I am just beginning to think that the symptoms are starting to show up on their own.

Here are the general symptoms of pituitary tumors:

I have the ones in red:

All pituitary tumors and craniopharyngiomas:

headache
decreased libido (interest / desire in sex)
menstrual disorders
cold intolerance
excessive perspiration (sweating)
decreased appetite
vision impairment, blurriness, blindness (particularly poor peripheral vision)
excessive thirst and frequent urination
growth failure delayed or premature puberty Doesn't really apply to me at this point
nausea my doc keeps asking about this one
dry skin Very itchy dry skin too!
constipation
fatigue
low or high blood pressure
hypernatremia (high sodium in the blood)
frequent urination (diabetes insipidus)

Now, we know I wasn't diabetic a few months ago, so we can rule that out. The vision impairment hasn't showed up yet but it may if a tumor starts to press on my optical nerve. I don't know about high sodium in the blood. He asked me if I was having trouble sleeping at night but I'm not sure if he is worried about too much synthroid or insomnia which is a symptom of a more specified tumor.

Needless to say, I need to make a decision this week on when I should get an MRI done. I appreciate the web for all of the information that it gives me about medical conditions but I always fear that I am "dreaming up" a condition.
I'll keep everyone up-to-date on what I decide to do. If I ever stop talking online, you can always contact Rosemary and she'll tell you if I'm okay. Afterall, she is my bestest friend :) She'll freak out about me even suggesting not being able to be on PNN.

Until then, I'll keep the blogs rolling!

Small Victory!

Yeayeawendy — Fri, 07 Nov 2008 06:04:11 GMT

While it is no major victory, I have managed to lose 2 lbs over the past 7 days. I am working out 4 - 5 hours a week and watching my diet as well. If the 100 mcg/day of Synthroid works as my doctor and I hope that it will, I should be able to lose about 1 to 1.5 lbs per week for some time to go! I very much look forward to this!

2 Months, 13 Days on Medication

Yeayeawendy — Fri, 31 Oct 2008 12:17:21 GMT

Hi Everyone! Popping into this part of my blog to give an update on where I stand with my diagnosis and medication.

It has been 2 months and 13 days since I started taking my Synthroid to treat my Central Hypothyroidism. A lot has changed, yet not so much has changed, but I'll fill you in.

Dosage: Despite the fact that my doc had kicked me up from 25 mcg/day to 75 mcg/day, I was still gaining weight. Even though my blood tests came back normal, he didn't feel comfortable at 75 mcg/day so he kicked me up to 100 mcg/day. I am now starting my third week on the 100 mcg/day dosage. I take only the name brand, Synthroid because at such small levels of medication, a slight change in a generic could mean big problems for me.

Sleeping: I'm not even half as tired as I used to be. If I get a good 8 hours of sleep the night before, I can go until midnight and sometimes later. I find myself very tired about once a week and need to spend a good day taking naps, but its nothing like the endless days of walking around like a zombie, just waiting to get into my bed.

Weight: I believe I've lost about 2 lbs since I started the 100 mcg/day dosage. I don't expect the weight to come off quickly but.....

Exercise: After months of despair and sheer exhaustion, I am back at the gym everyday. I tried to go back in September but ended up re-injuring an old injury and had to use a brace and crutches. I'm walking 2 miles a day on the treadmill. I plan on doing this at least 5 days a week. I always take 600 mg's of Ibuprofin about an hour before I go to the gym so that I'm not feeling the pain.

Alertness, Mental Health, and Memory: Simply because I am awake more, I am far more alert. My memory hasn't improved much more, but its getting there. I am able to handle stressful situations a lot easier and don't find myself depressed as often.

Hoarse Voice: My voice is changing with the meds. I always sounded like a 5 year old on the phone before (lisp and all), so I'm not really complaining about this. Could do with a little less scratchiness - am trying to solve that with tea and honey.

Constipation: I know this is a really "crappy" thing to talk about, but I can finally "go" again without the aid of laxatives and all kinds of other stuff that I shouldn't even be talking about at the age of 31!!! Needless to say, while it is embarassing to talk about, I think its important that people know that constipation is a symptom of Central Hypothyroidism. Even with an intake of 40+ grams of fiber per day, I couldn't "go". So, if you have this problem, along with other problems mentioned in the symptoms section of this page, PLEASE go seen an endocronologist!

Puffy Face: I don't know if the puffiness was from getting heavier or just that bloated puffiness, but that is starting to go down a bit. I expect it to go down more as I lose some of this weight and as the higher dosage of medication starts to kick in!

Wardrobe: My wardrobe options still suck BIG TIME! But, I refuse to buy a whole new set of clothes when I know - deep down in my heart- that with my medication and a little bit of discipline, I can lose every pound that I put on from this illness. There will be no "fat, fatter, and fattest" section in my closet. I will wear uncomfortable clothes before I give myself license to regain excessive weight. I will wear my non-elastic clothing again one day!!!

Well! That's it for my update! I hope the information that I provide is helpful to someone out there!

1 MONTH on medication

Yeayeawendy — Wed, 24 Sep 2008 02:19:04 GMT

I've been Synthroid for Central Hypothyroidism for a month now. For the first week, I was only on 25 mcg's. I called my doc and told him that I wasn't feeling any better. Of course - I wouldn't feel much better, it had only been ONE week, but I thought that maybe I should feel a tiny bit better. He asked me to come into the office and when I got there, they weighed me. Not only was my weight not stabilizing, I had gained SIX pounds in ONE week. My doctor was horrified!

He immediately kicked my dosage up to 75 mcg's / day. When I went back last week, week 3 of 4, I hadn't lost any weight, but I hadn't gained any either. Miracle of Miracles! They took my blood again and now I will more than likely have my dosage increased, but things are getting better. I am now awake more than 14 hours a day AND I feel a little bit better with a less-cloudy head.

I'll keep everyone informed of my progress. If you have the same illness or a similar one, please contact me!

Before Diagnoses

Yeayeawendy — Mon, 22 Sep 2008 18:18:43 GMT

One night, before I was diagnosed I was talking to Rosemary about how frustrated I was growing. As the summer got longer, I was getting bigger. The weight I was gaining would make someone think that I was lying in a coma being fed Ben & Jerry's through a tube. But the opposite was true. I was working full time, active from 6 a.m. - 9 p.m., playing with my 2 year old newphew, cleaning house, working out 3x a week for an hour at a time, and driving long commutes.

None of my clothes fit and my feet had grown a size larger. It was summer, so I put a pair of flip-flops on and continued to live. It didn't take my micro-managing boss two seconds to start complaining about my foot-wear. Mind you, the girl in the office that he was sleeping in came in every day looking like the girl from Roger Rabbit, all the down to her scantily clad feet - that didn't matter, he was targeting me. I was facing social prejudice against fatness. It didn't matter that I hated what was happening to me and I would have much rather preferred not gaining 20 lbs in a month, he was sure to make my life difficult. I told him that I was being tested and that he'd get a dress-code note when he got one. It's not like I was in danger in my flip-flops and it wasn't like the public saw me on a daily basis. He just wanted to be rude and he was doing a good job of it.

I was also very tired. Near the time of my diagnosis, I was sleeping up to 18 hours a day. I knew it was time to get help when I left work early, at 3, slept til 8, got up for an hour to eat dinner, and immediately fell back asleep. Between the sleeping and the constant "brain fog", my life was coming unwound very quickly.

The worst part was the constipation. I used to eat over 40 grams of fiber a day, chased down by gallons of water, and still, my "library" was going unused! I remember telling my GP about this problem and he just looked shocked that I wasn't cool with taking any more laxatives. I was so frustrated, so tired, so overwhelmed, and so fat!

The days leading up to my blood tests results were long. The docs office was processing them, and things got put on hold when the lady at the lab broke her arm. I suddenly felt like I was Vinny in "My Cousin Vinny when he couldn't get a suit because the entire store was closed "for the flu".

Needless to say, when my phone rang and it was the doc, I was excited. That was killed by the fact that he had no real results and wanted to test my pituitary gland. Based on the fact that I have a blog about Central Hypothyroidism, the rest is history.

Symptoms of Hypothyroidism

Yeayeawendy — Fri, 19 Sep 2008 19:36:38 GMT

Gaining a lot of weight, but not eating anymore? Waking up after 10, 12 or 14 hours of sleep and still tired? Forgetting stuff that you would have never forgotten before? It may be time to get your thyroid checked out! Here are some of the symptoms of hypothyroidism:

Fatigue
Sluggishness
Increased sensitivity to cold
Constipation
Pale, dry skin
A puffy face
Hoarse voice
An elevated blood cholesterol level
Unexplained weight gain
Muscle aches, tenderness and stiffness
Pain, stiffness or swelling in your joints
Muscle weakness
Heavier than normal menstrual periods
Brittle fingernails and hair
Depression

You don't have to have all of the symptoms, but I'd say, if you have more than three, call an endocronologist.

The Central Hypothyroidism Highway

Yeayeawendy — Fri, 19 Sep 2008 12:25:06 GMT

On August 6th, I began a journey that I never imagined I would be on. I went to an endocronologist to get tested for a thyroid condition. As I sat patiently waiting for the tests to come back, I hemmed and hawed because I was afraid that if nothing explained my constant exhaustion and rapid weight gain, I was going to be doomed.

One week later, after waiting for tests that the doc said would take 2 days, I got the news. I did not have hypothyroidism. My doc didn't stop there, he asked my permission to take the remaining blood and test my pituitary gland. I allowed him to do so (gladly). In this test, he found out that I had Central Hypothyroidism. Since I don't quite understand my chronic illness just yet, I'm going to copy and paste what this illness is. Here is my source:

The overwhelming majority of patients who have hypothyroidism have thyroid disease (primary hypothyroidism). Central hypothyroidism refers to thyroid hormone deficiency due to a disorder of the pituitary, hypothalamus, or hypothalamic-pituitary portal circulation. Pituitary thyrotropin (TSH) production is regulated in part by the hypothalamic thyrotropin-releasing hormone (TRH). TRH is released into portal blood vessels and transported to the anterior pituitary gland where it regulates the synthesis, glycosylation, and release of TSH.

Are you confused yet? If so, you're not alone. In my words, Central Hypothyroidism is the nasty cousin of hypothyroidism that lurks in the background. He's the guy to go looking for when you have all or most of the symptoms of hypothyroidism, but you don't get that diagnosis.

I'll talk about the symptoms of hypothyroidism in the next column.