Tired Girls

General posts about my experiences with fibromyalgia and Hashimoto's disease.

Saturday, September 02, 2006

New doctor… again

I finally made an appointment to see a physician who is a fibromyalgia specialist.  A few years ago I had a great general practitioner who was very knowledgeable about FMS, and who kept up-to-date on current trends and treatments, but she left her practice and moved out of state.  I was later given a referral to Dr. Dean Mondell by my endocrinologist, but Dr. Mondell’s office told me he wasn’t seeing any new patients.  That was a frustrating time for me—my internist had moved out of state, and my endo was about to move out of the country—and having my referral “rebuffed” was about all I could handle.  I simply decided to treat myself, and that’s what I’ve been doing for the past three years or so.  I’ve felt that I’ve been stagnating lately, though, and I’m not happy with my general sense of “going downhill”, so I picked up the phone and called Dr. Mondell’s office again.  I realized he wouldn’t see me, but I was able to make an appointment with one of his colleagues.

On September 29th I’ll be seeing Dr. Joseph Gnoyski at Rehabilitation Associates of Nevada.  I’m still a bit disappointed (yes, still, three years later!) that I can’t see Dr. Mondell himself, because he’s really the local expert in FMS, but I’ll hope that Dr. Gnoyski has picked up some helpful tips during his time in the same office wink Just getting this appointment at all took a bit of wrangling, because the person doing the “screening” wasn’t very happy that I might not be able to get all my medical records.  I told her I’d try, but I couldn’t promise anything, but she was pretty nice about it after I explained how I’d lost my previous doctors.  I also hope she understood that as a cash-pay patient, I can’t just be running off to different doctors all the time looking for referrals.  Frankly, there’s nothing in my previous medical records that I can’t tell the doctor, anyway (unless someone noted that I was a lunatic or something).  I have a suspicion that one of the first doctors I saw when I moved to Nevada recorded his assertion that there was nothing wrong with me but depression, and I don’t need biased information like that getting passed around.  I’d really like to start with a fairly clean slate, and I hope I’ll have a good rapport with this new doctor for a very long time.

The rehab clinic sent me all their intake forms via snail mail as per my request—I didn’t want to fill them out the day of my appointment, as I’d invariably forget something.  They arrived yesterday, a thick envelope of papers, including a diagram of the body where I have to mark the places which hurt.  In my head I’ve already just coloured in the entire diagram with red, blue, and purple (as my body often feels like it’s red, blue, and purple from top to bottom), but eventually I’ll have to be more specific.  I’ll try to make a note on the diagram everytime a new spot occurs to me, and I’ll be starting with the soles of my feet, because they ache like someone has been beating them with sticks.  I don’t think “bottom of feet” is a standard fibromyalgia point, but I’ve got to start with what I know.

My first visit will cost $200, and all subsequent visits will be $75.  I hope the very expensive lab work I had at my last doctor’s visit in August will suffice for this appointment as well, but I won’t be surprised if I end up needing more bloodtests.

Posted by Leigh-Ann on 09/02 at 08:12 PM
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Wednesday, August 30, 2006

Fibromyalgia: Show Me Where it Hurts

Has anyone reading this blog seen the DVD called, Fibromyalgia: Show Me Where It Hurts?  The title seems a bit overly-simplified, and at $29.95 for just 37 minutes of video, I’m a bit reluctant to buy it without a recommendation.  However, if it’s helpful, I don’t mind shelling out for it.  If anyone comes across this entry and has feedback about it, please let me know what you thought of it!

Posted by Leigh-Ann on 08/30 at 07:29 PM
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Monday, August 28, 2006

Navel-gazing

I was navel-gazing today, literally.  I was about to jump into the shower when I noticed an odd scar just above my belly button, a scar I’d never noticed before.  “Damn cats,” was the thought that went through my head—I’m covered in scars and scratches from head to toe from the cats, although I thought it was strange that I didn’t remember having a big divot left in my abdomen.  Then a light went on in my head:  the “scar” was a hole, from my navel piercing, and my navel ring was apparently long, long gone.  Gone for how long?  I have no idea.  Maybe a couple of weeks, maybe more?  I’ve had a 14k gold ring, a “ball closure ring”, in continuously for over 10 years (minus the two days it was out when I had surgery), yet I’d failed to notice it was missing and didn’t even realize something was off as I gazed at my unadorned belly-button.  I had a “spare” ring in a jewelry box, but when I tried to insert it, one end of the hole had closed over and I had to break the skin to get it through—that must mean the original ring has been out of there for a long time.  Honestly, stuff like this alarms me—I seem to go through life in a semi-conscious haze.  I get milk out of the refrigerator and put it into a cupboard when I’m done with it.  I intend to put something in the microwave but open the fridge instead.  I pull open the dishwasher door and toss trash inside.  Despite all this, I can often do “high-functioning” tasks, and read, and learn new things, but my regular auto-pilot is very broken.

I blame the white noise.  That’s what I’ve decided to call the constant buzzing of pain, the incessant throbbing of nerve endings always calling to my brain.  I wish I could just learn to tune it out, but the pain is always there, like “snow” on a television set.  I need to find something to muffle the sound or shovel the snow or some other appropriate metaphor… either that, or invent a refrigerator with a built-in microwave, and a navel ring which never falls out.

Posted by Leigh-Ann on 08/28 at 10:18 PM
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Saturday, August 26, 2006

Employment-phobic

I haven’t had a job in over a decade.  My last real-world, go-to-the-office job ended in 1994, when I quit my job as Program Director of a radio station.  I felt physically great at that point in my life, and I went back to school full-time so I could head down a new career path.  My FMS hit me with a vengeance three years later, and that was when everything changed.  I ended a relationship, I moved to a different state, and I stopped going to school.  I would have tried to find a job despite the fibromyalgia, but I didn’t have a green card and wasn’t eligible to work in the US.  I’ve since been supported by my partner, and have helped make ends meet by doing independent contractor work from home (website design, freelance writing, etc.).  I sometimes go for days without feeling capable of working, and have often felt that not being permitted to work was perhaps a blessing in disguise.

This past Wednesday I finally received a Work Authorization card (the precursor to a green card), and suddenly, I can work out in the real world again.  I not only am permitted to work, I really must work because of our tight financial situation, and the thought of this is scary.  It’s tough enough to have to back into the big, bad world after a decade in isolation, but I also have to wonder/worry about what I’m physically capable of.  When I was younger I loved doing temp work, especially if it was in a factory-setting, yet now all I can think is that I’m in too much pain to stand all day or do too much lifting.  I think I could handle a computer job, but wonder if my brain can be forced into functioning for eight hours a day, five days a week.  I worry about failure, but mostly, I worry about being faced with the reality of what I can and cannot do.  In my head, I like to think I’m still the strong, energetic person who worked 60+ hours per week without a second thought, and it bothers me to no end that I’ve now got limitations.  For years I’ve dreamed of being something like a veterinary technician, but now that I have the work permit so that could be possible, I know I might not be able to cope with the physical and mental requirements of the job.  I’ve never had to deal with the idea that I’m not capable of achieving a goal I set for myself, but that moment is probably just around the corner.

I’m nervous, and I’m angry with my limitations… I need someone to invent a magic “feel like you’re 25 again” pill.

Posted by Leigh-Ann on 08/26 at 11:40 PM
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Cymbalta makes me tired?

The question mark in the title is there because I honestly don’t know the answer.  Since I started taking Cymbalta, I’ve felt extra-fatigued and “brain-foggy” during the day, but I haven’t been sure if it’s the Cymbalta’s fault or if it’s just seasonal and/or stress-related.  Just in case the Cymbalta was the culprit, last week I decided to take it before bed instead of in the morning, and I think my fatigue has become even worse.  That doesn’t make any sense, does it?  I feel like I’m sleeping well, but I still wake up feeling like a truck hit me (a truck filled with sleeping pills), and I can’t seem to shake it off.  I wish there was a magical test to tell me why I feel this way, and whether or not the Cymbalta is to partially to blame.  I have to say “partially” because my pain is a constant, it’s just the 24 hour fatigue which is new.  I used to be able to count on about six hours of clarity per day, if nothing else, and even that is gone.  I need to do some more reading about Cymbalta to figure out if this is common, if it goes away, if it’s totally unique, etc.  I wish I could easily just switch back to Effexor for a month to see if I felt any differently, but I really want to give Cymbalta at least a three month trial.

One “fun and funky” thing about taking Cymbalta before bed is that it seems to give me very vivid dreams.  I’ve been reading an excellent book about Japan called, Hitching Rides with Buddha, and when I read a few chapters before bed, I dream about traveling in Japan.  Vivid dreams might not be as attractive if I was reading horror stories before falling asleep, but so far, I’ve been pretty pleased with my dreams of cherry blossoms and the Japanese countryside.  I remember being much younger (like, twenty years younger) and noticing that birth control pills gave me nightmares, so this is a nice alternative.

Other than concerns about fatigue, and vivid dreams, my Cymbalta experience has been pretty mundane.  I had mild headaches at first but those went away after about two weeks.  It’s been much less interesting than the time I took Wellbutrin and subsequently couldn’t remember the name of the colour red, or how to tie my shoes.

Posted by Leigh-Ann on 08/26 at 11:15 PM
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Sunday, August 13, 2006

Acai

Everyone’s got a miracle cure.  A few years ago the world was touting the miracle of soy, and I have to admit that eating a lot of soy made me feel pretty good for a while.  My cholesterol level was fabulous, and I actually liked the soy foods, like Luna Bars—they became my main breakfast food, and I probably ate one daily for at least two years.  I also love soy milk, which Flippy hates, and happily drank all my Starbucks beverages made with soy.  I truly did feel that soy helped my overall health levels, but I started to wonder if it was damaging my thyroid.  Fear of exacerbating my Hashimoto’s disease, combined with increasing lethargy, made me decide it was time to stop the daily soy.  I was sad, because I missed a lot of the foods I enjoyed, and I admit that I still have an occasional soy milk mocha at Starbucks as a treat.  I don’t eat soy on a regular basis anymore, though.

The next health miracle I was told to try was mangosteen juice, which was popularly marketed as Xango.  I found it rather intriguing that this miracle cure for so many ailments was only available to purchase via MLM schemes and/or at great expense.  Until I read more conclusive, mainstream evidence that mangosteen was effective, I wasn’t going to shell out $25 per bottle for Xango.  I eventually bought one bottle of cheap mangosteen juice, and it didn’t seem like much more than just juice.  I didn’t notice that it did anything special, but I liked the flavour so much that I’m now willing to make the sacrifice of ordering Mangosteen Madness smoothies at Smoothie King.

The latest and greatest natural miracle is supposed to be acai, a berry from Brazil with “powerful antioxident properties” and “anthocyanins”.  I first saw acai mentioned on a fibromyalgia support message board, but unfortunately the message was a spammy one, written by someone trying to sell stuff, and the same message was repeated word for word on other boards.  There was just no credibility.  I’ve seen websites which claim that acai will “give relief from the symptoms of fibromyalgia”, but that’s a pretty massive claim.  It’s hard to seriously consider adding daily doses of acai to my diet, given that all the people promoting just seem to be in it for the money.  The one acai product I will vouch for is Sambazon juice, just because I like the taste of it!  I’ve only had the “Protein Warrior Chocolate Smoothie”, but I think it’s delicious.  It’s very thick, sort of fruity and dark chocolatey, and a little odd but tasty.  Flippy despises it entirely and thinks it tastes like cardboard, so proceed at your own risk.

I wish there really was a miracle food out there.  It would be so nice to feel better from eating something which tastes good, rather than just popping pills all the time.

Posted by Leigh-Ann on 08/13 at 08:13 PM
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Monday, August 07, 2006

Discontinuation syndrome

A story appeared on the newswire today about the possibility of anti-depressants causing withdrawal symptoms.  All around the word, tens of thousands of people simultaneously muttered, “No duh!” at the news.  Anecdotes about Prozac withdrawal have been around for at least a decade, and websites like Crazy Meds have long existed to help patients cope with the side-effects of being on, and getting off, anti-depressants.  Anyway, here’s the article if you missed it… I’ve bolded a couple of the most ridiculous sentences:

Antidepressants Prove Addictive to Some

Associated Press

By MATT CRENSON , 08.06.2006, 12:43 PM

When Gina O’Brien decided she no longer needed drugs to quell her anxiety and panic attacks, she followed doctor’s orders by slowly tapering her dose of the antidepressant Paxil. The gradual withdrawal was supposed to prevent unpleasant symptoms that can result from stopping antidepressants cold turkey. But it didn’t work.

“I felt so sick that I couldn’t get off my couch,” O’Brien said. “I couldn’t stop crying.”

Overwhelmed by nausea and uncontrollable crying, she felt she had no choice but to start taking the pills again. More than a year later the Michigan woman still takes Paxil, and expects to be on it for the rest of her life.

In the almost two decades since Prozac - the first of the antidepressants known as SRIs, or serotonin reuptake inhibitors - hit the market, a number of patients have reported extreme reactions to discontinuing the drugs. Two of the best-selling antidepressants - Effexor and Paxil - have led to so many complaints that some doctors avoid prescribing them altogether.

“It’s not that we never use it, but in the end I will tend not to prescribe Effexor or Paxil,” said Dr. Richard C. Shelton, a psychiatrist at the Vanderbilt University School of Medicine. Shelton has received grant support from the makers of both drugs and consulted for a number of other pharmaceutical companies.

Patients report experiencing all sorts of symptoms, sometimes within hours of stopping their medication. They can suffer from flu-like nausea, muscle aches, uncontrollable crying, dizziness and diarrhea. Many patients suffer “brain zaps,” bizarre and briefly overwhelming electrical sensations that propagate from the back of the head.

Though not exactly painful, they are briefly disorienting and can be terrifying to patients who don’t know what they are experiencing. There are case reports of people who have just quit antidepressants showing up in hospital emergency rooms, thinking they are suffering from seizures.

Toni Wilson certainly didn’t know how unpleasant going off Zoloft could be when her doctor recently switched her to Wellbutrin, telling her that the new drug would “take the place of” the old one. The two antidepressants actually work on entirely different neurochemical systems, so going straight from one to the other was equivalent to quitting Zoloft cold turkey.

“After about three days I felt real anxious and irritable,” the Kansas woman said in an e-mail message. “I would shake, not eat much, it felt like little needles in my body and head.”

Cases like Wilson’s would be virtually nonexistent if physicians took more care in weaning their patients off antidepressants, said Philip Ninan, vice president for neuroscience at Wyeth, the maker of Effexor.

“The management of discontinuation symptoms is relatively easy if you know about it,” Ninan said, and noted that Wyeth had made efforts to educate both physicians and patients.

Yet surprisingly few doctors know enough about SRI discontinuation to manage it effectively. A 1997 survey of English doctors found that 28 percent of psychiatrists and 70 percent of general practitioners had no idea that patients might have problems after discontinuing antidepressants. Awareness may have increased since then, but the phenomenon is so little studied that no one has done the necessary research to find out.

The condition’s prevalence is equally mysterious. Studies put the rate at anywhere from 17 percent to 78 percent for the most problematic drugs.

So little is known about it that researchers aren’t even exactly sure what causes the symptoms. It may be related to the fact that the brain chemical affected by most of the antidepressants on the market today, serotonin, does a lot more than regulate mood. It is also involved in sleep, balance, digestion and other physiological processes. So when you throw the brain’s serotonin system out of whack, which is essentially what you’re doing by either starting or discontinuing an antidepressant, virtually the whole body can be affected.

Generally the drugs that are metabolized most quickly cause more severe symptoms, Shelton said. Effexor, which breaks down in a period of hours, is one of the worst SRIs in that regard; Prozac, which has a half-life of about a week, is considered the best.

Some doctors have been able to minimize withdrawal symptoms in patients who are quitting Effexor or Paxil by gradually switching them over to Prozac, then tapering them off the more easily discontinued drug.

Critics of the pharmaceutical industry complain that drug companies downplay the severity of drug discontinuation symptoms. The prescribing information companies provide to doctors warns that patients occasionally experience mild symptoms when they stop taking SRI antidepressants, but imply that tapering off the medication can prevent problems. Medical journals describe the ill effects of going off the drugs as “mild and short-lived,” and usually avoidable if the dose is tapered.

“I don’t think they’re difficult to go off,” said Alan Schatzberg, chairman of the department of psychiatry and behavioral sciences at the Stanford University School of Medicine. “The vast majority of people aren’t that sensitive.”

Schatzberg recently chaired a Wyeth-sponsored panel of physicians that offered guidelines for how to manage “antidepressant discontinuation syndrome,” the preferred medical term for what a layperson would think of as withdrawal. He has also served as a consultant to several other pharmaceutical companies.

Terms like “antidepressant discontinuation syndrome” demonstrate the pharmaceutical industry’s efforts to downplay the problem, charged Karen Menzies, an attorney who has been involved in litigation over the phenomenon.

“Withdrawal is the word that is used in Europe,” she said.

In December 2004 Britain’s drug regulatory agency issued a report that warned that all SRIs “may be associated with withdrawal” and noted that Paxil and Effexor “seem to be associated with a greater frequency of withdrawal reactions.”

But drug companies insist antidepressants can’t cause withdrawal because they are not technically addictive. Even so, many patients who have gone through the experience say it feels like withdrawal to them. Some can’t work, drive, socialize or do other everyday things for weeks.

“You just feel awful,” said a New York children’s entertainer, who asked not to be named for professional reasons. He has taken a small dose of Effexor for eight years rather than suffer through the withdrawal experience. But he said the inconvenience is worth it for the benefits the drug provided him when he needed it.

Taking SRIs indefinitely is not an attractive option for many patients because it means putting up with unpleasant side-effects such as weight gain and sexual dysfunction. For women who want to have children it’s an especially risky choice; researchers have documented withdrawal in newborns whose mothers were taking antidepressants, and some SRIs have been linked to birth defects.

Having to keep taking Paxil makes O’Brien angry because she feels at the mercy of GlaxoSmithKline, the company that makes it.

Though a GSK spokesperson said the symptoms associated with discontinuing Paxil are generally mild and manageable, in O’Brien’s eyes the company is profiting by having hooked her on one of its drugs.

“If they ever did quit making Paxil, I’d be in so much trouble,” O’Brien said. “What really makes me mad is if I can’t get off it, why am I paying them? They should be paying me.”

------------------------------------------

I don’t think stories like this should scare people who might need anti-depressants.  I just want people to be aware of what they’re getting into, and to know that taking these drugs involves a process of adjusting to them while starting them and while stopping them.  It’s not a task for the impatient, but it’s not impossible, either.

In a related story, the FDA approved generic Effexor (Venlafaxine Hydrochloride) today.  That’s welcome news for those of us who’ve paid $100+ per month for the brand name from Wyeth, although I don’t think the extended-release form will be available as a generic just yet.  No word on pricing, but the drug is supposed to start shipping immediately.

Posted by Leigh-Ann on 08/07 at 09:20 PM
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Sunday, August 06, 2006

Good shoes for sore feet

I don’t know if it’s FMS-related or not, but for the past few years I’ve suffered periodically with plantar fasciitis.  If you aren’t sure what that is, it’s a searing pain you get in the bottom of your foot, (usually the heel), and often when you first get out of bed in the morning.  It’s easy to treat but slow to heal, and can be a real bummer.  Who wants to exercise when every step makes your foot feel like it’s on fire?!

Luckily, Flippy found some great shoes for people with back problems, Earth Shoes.  People who owned the shoes seemed to love them, and many mentioned they were effective in treating plantar fasciitis.  So, Flippy and I both ordered a pair of athletic shoes from Zappos, as those are the type of shoes we wear 99% of the time when we leave the house.

At first, the shoes were a tad uncomfortable.  They had a very strong arch, and it felt odd to have so much support after going barefoot or wearing flip-flops all the time.  They also have a “negative heel”, meaning that the heel of the shoe is lower than the toe.  Until you get used to the sensation, it feels like you’re tipping backwards slightly.  After a few wearings, however, we definitely noticed an improvement in how we feel when we’ve got them on.  For Flippy, putting on the shoes gives her relief from back pain, so they must help improve posture.  For me, the padded sole plus the strong arch support seem to help keep the plantar fasciitis in check.  Best of all, the slight incline of the shoe means that you get a bit of extra exercise when you walk, and I think our legs appreciate the difference.

I’m about to go order myself a second pair of shoes, this time a “casual shoe” for wearing with jeans:  Heritage 3.  They aren’t the most beautiful shoe, but I’m so used to wearing tennis shoes all the time because my feet hurt that I think anything other than white leather will look like I’m dressing up!  I hope these ones will be as comfortable as the athletic shoes.

Posted by Leigh-Ann on 08/06 at 08:51 PM
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Saturday, July 29, 2006

Hashimoto’s Disease

While living in San Francisco a few years ago, I discovered the wonder of clinical trials.  Clinical trials not only meant free treatment for conditions a person might have, they often meant cash.  I got started in my first clinical trial when I answered a newspaper ad looking for people with symptoms of depression, and that’s how I ended up in an open-label study of Celexa.  I didn’t get paid, and only received free medication, but I was completely broke and would have otherwise not been able to seek treatment.  After Celexa, I participated in a trial of Gingko Biloba and Cordyceps mushrooms under the same psychiatrist, and this time I was given free medication as well as free bloodwork.  That bloodwork showed I had a low testosterone level, so I was given a testosterone cream to try.  I wouldn’t have ever thought to look for that problem if the bloodwork hadn’t found it.  Before we’d left San Francisco, Flippy and I had also been in paid trials for a new intra-nasal tetanus vaccine, and I think we were excluded from a trial regarding staph infections as the bacteria didn’t show up in our normal flora.  I thought it was pretty cool to get a free tetanus vaccine, free blood tests, and a check for $100.

(There were certain clinical trials I just couldn’t do, like one for Lasix which required a few days of staying in the hospital.  Even though it paid $600, I didn’t want to do anything so dangerous as to require hospitalization).

When we moved to Las Vegas, I again looked to clinical trials to meet some of my healthcare needs.  I found a trial which I think involved using zinc to treat breast cancer (it’s amazing what I can’t remember).  I didn’t have breast cancer, but they needed healthy volunteers to take a pill with a very low-level of radiation in it, which I was assured was completely safe.  Part of the screening was thyroid bloodwork, and I found out I didn’t qualify for the trial because I had Hashimoto’s disease.  I’d never heard of that before, but the doctor running the trial assured me it was nothing serious, but that my thyroid couldn’t risk being exposed to any radiation.  The short definition is that Hashimoto’s thyroiditis is an auto-immune disorder, wherein the body attacks its own thyroid and products thyroid antibodies.  Although my TSH and Free T3/T4 blood levels were normal, the presence of thyroid antibodies in my blood was not.

I liked the doctor running the trial (young, Canadian, and gay), and I asked if I could see him as my primary care physician—I could.  So, I started to see him for treatment for my depression, as well as for my aches and pains (which I would eventually learn were fibromyalgia).  He was good about giving me free Effexor from his sample cabinet, but never suggested that my aches and pains were anything other than “in my head”.  When I did some reading and found out that Hashimoto’s disease could cause symptoms of hypothyroidism, even with a normal TSH, I asked him if I could try taking T4 to see if it helped my overall discomfort, but he was very reticent to try that.  He discounted materials I brought him from Medline, saying he’d “read them later”, and basically just refused to try me on any thyroid replacement hormones.  That’s when I ceased to be his patient, and sought out an endocrinologist.  The endocrinologist felt my thyroid, said it was enlarged, and immediately put me on both T3 and T4 to stop the problem from getting worse.  He noticed I had quite a few symptoms of hypothyroidism, and he treated me based on how the symptoms resolved, not on what my bloodwork said.  I think I eventually got my TSH down to just slightly above zero before I noticed an improvement in some areas.

I currently take 10 mcg of Cytomel daily, and 75 mcg of Synthroid.  Without them, I’ve had severely dry, cracked skin, an abnormally low body temperature, and extreme sensitivity to cold.  Those are the things I’ve noticed which have resolved most dramatically, but I’m sure there have been other small changes as well.

Long story short, if you need medical treatment but have little money and no insurance, check out clinical trials.  They can be a way to get treatment and medication, especially for mental health issues like anxiety and depression.  Also, if you feel you have the symptoms of hypothyroidism, but your bloodwork turns up normal for your TSH/free T3/freeT4 range, you might want to have your blood checked for thyroid antibodies.  A “normal” TSH of 4, in the presence of antibodies, can be a sign that your thyroid is marching towards the shutdown mark, and replacement hormones can help prevent or slow that process down.

Posted by Leigh-Ann on 07/29 at 11:26 PM
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Thursday, July 20, 2006

The lab bill

I received my lab bill today, the one I referenced in the preceding entry.  As I’d mentioned in that entry, I went to a new doctor, and he unexpectedly required me to have blood work done before I could have my consultation.  I agreed, but also wondered what the lab bill would be, as I normally pay $125 via HealthcheckUSA.com for a complete workup.  I was horrified/stunned/furious when I found out today that Quest Diagnostics is charging me $353.35 for a basic metabolic panel, lipid panel, free T4, TSH, and CBC w/platelets!  Add that to the $20 “collection fee” the doctor’s office charged me, and these tests cost me $236.35 more than what HealthcheckUSA would have charged (after handling fees).  I also didn’t get any liver function tests or a Free T3, as would have been included for my $125.  I’ll be writing a letter of complaint to Quest Diagnostics, but in the interim, it’s so frustrating to be overcharged in such a random fashion.

The summary of my doctor’s visit is as follows:  I was charged $613.35 to be told to take 5-HTP to treat my problems.  The $20 B12 injection hasn’t made any difference that I’m aware of, although it did leave me with a sore arm.

Posted by Leigh-Ann on 07/20 at 08:22 PM
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Wednesday, July 12, 2006

New doctor

This is my first entry in this blog, which I set up to write about my life with fibromyalgia, chronic fatigue syndrome, Hashimoto’s disease, and no health insurance.  I don’t want to crowd my other “pet-themed” blog with medical issues, so I thought a second blog would be appropriate.  I want to be able to write about treatments I’ve tried, treatments which have and haven’t worked, treatments on the horizon, and general day-to-day suckiness of never knowing how I’ll feel when I get up in the morning.  This is my 10th year with the symptoms of FMS.

Before I start, a quick caveat and “cover my ass” moment:  I often self-medicate by buying medication over the Internet, and often go for years at a time without medical supervision.  I do not recommend you do this!  The reasons I’ve ended up doing this are many and varied, and I’ll write about them eventually, but under no circumstances should anything I write be construed as advice or a recommendation (unless I actually say it is one or the other).  I’ve been exceedingly grateful for the times I’ve had access to good doctors, but sometimes those opportunities are limited, and I’ve had to get by as best as can.  An example of this would be my Hashimoto’s disease/hypothyroidism:  when my endocrinologist suddenly left the country to care for his mother in South Africa, I didn’t have a doctor.  So, I used up all the Cytomel and Synthroid I had on hand, then I continued buying the same doses on the Internet.  Once a year, I ordered bloodtests online via Healthcheck USA, and then I compared the lab results to the lab results I have on file.  If I’d ever seen an anomaly I definitely would have sought out a doctor, but I generally found my TSH stayed consistent, and that was what I needed.  It was through this method I continued taking Effexor XR and Ativan as well, and I think I’ve been able to keep myself fairly stable for the past couple of years.

Unfortunately, since Flippy’s surgery, I haven’t felt very well and the extra physical labour has been tough on me.  I finally decided it was time to start seeing a doctor again, especially because someone advertising himself as a “pain management specialist” had opened an office in our neighbourhood.  I made an appointment for today, and filled out all the paperwork in advance.  I included a typewritten sheet outlining my FMS history, where I listed what doctors I’d seen and where, what I’d been diagnosed with, and what medications I’d tried.  At least two doctors I’ve been to in the past 7 years are no longer “in business” (I must be tough on them), so my medical records can be hard to dig up.  I assumed that a cover letter would help fill in gaps.  The purpose of my appointment primarly was to get refills of my Cytomel and Synthroid, to see about switching from Effexor to Cymbalta, and just to check to see if this doctor had any fibromyalgia suggestions.

The office visit was $125, payable in advance.  When I was taken to the exam room, I was told that the office required that I have an EKG, a full blood panel (TSH, liver, cholesterol, etc.), and a chest x-ray “to set a baseline”.  I knew I’d have to have bloodwork done at some point, if only to check my TSH, but I wasn’t very happy that I was being told I needed to have it done at their office.  I also didn’t like all the extras they required, just because we’re on a fixed budget.  They wanted $40 for the EKG, $70 for the chest x-ray, and $20 to collect my blood—they said the lab would bill me separately, but they didn’t know how much that bill would be.  I can tell you this—if it’s more than $105 I’ll be very angry, because that’s what the identical tests from Healthcheck USA would have cost me.  I was more or less forced to agree with what they wanted, as it was either that or leave, and I really needed my medication so I stayed.  I would have been nice if they’d told me when I made my appointment that so much extra would be required, as today’s appointment was suddenly about to cost $260, plus the lab fees, plus the costs of my medicine.

The office was very high tech, and the staff was very friendly and competent.  I saw two “medical assistants”, a physician’s assistant, and finally the doctor, but only after I’d had all my required tests done.  Unfortunately, the doctor really underwhelmed me, especially because the last few doctors I’ve had have encouraged me to speak up about my needs.  I told him that I’ve been on Effexor for the past seven years, off and on, and that I was interested in trying Cymbalta as I’d read that FMS patients have had good luck with it reducing their daily pain levels.  He said, “No, let’s just keep you on the Effexor and increase the dosage until we’ve maxed that out, and then we’ll see about trying something different.” I then explained to him that I can’t afford to “max out” a dosage of Effexor, and that the reason I go on and off the drug so frequently is because I develop tolerance to it, and can’t afford the increased dosage (at one point, I was taking $324 worth of Effexor every month).  He then reluctantly agreed to give me three months worth of Cymbalta, but then I had to insist on getting a month’s worth of Effexor, too, so I can taper down the dose so I don’t switch over “cold turkey”.  Again, he seemed a bit skeptical when I said that, which bugs me to no end because every general practitioner and internist should know that antidepressants cause bad withdrawal symptoms if they aren’t tapered.  It seems that no one ever knows but us patients.  He kept looking up information on his Blackberry, which was fine, but I was surprised that his knowledge about antidepressants was so limited.  He ended up giving a prescription for an intermediate-sized dosage of Cymbalta, not the lowest dosage, and that bothered me too—I’d prefer to be taking the lowest dose I can get away with, but I didn’t think I should keep arguing.

I then had to ask for my thyroid meds, which he was okay with, but he acted like he didn’t know what Cytomel was.  I also asked for Ativan, which helps me sleep properly (sleep is a big FMS problem), and he gave me a scrip for 30 pills.  Yippee, not.  My last doctor would give me 60 pills per month, with six months worth of refills, and that would last me for over a year.  I never take the medication every day, just when I need it, but I guess the new guy doesn’t trust me yet.

Finally, the doctor asked me what had worked for my fibromyalgia pain in the past.  I said the dirty word, “Oxycontin”, and his eyes grew wide.  He said, “We don’t want to get into giving you something like that every day, yadda, yadda, yadda...”, which I know, and I don’t want to take it every day because it makes me slightly nauseous, but it is the only thing which has ever given me full relief from pain.  I then asked him, “Are there any new treatments for FMS?”, thinking in my head about new anti-depressants being tested, medications like Provigil, etc., and his answer was “5-HTP and B12 injections.” Period.  That’s what the pain management specialist wants me to take for my Oxycontin-level pain, one 5-HTP pill per day ("whatever size they sell at the store"), and he wants me to have injections of 1cc of B12 per month, at a cost of $20 each.  I didn’t want to seem uncooperative so I agreed to the B12 shot, but they had to go get Flippy from the waiting room to make her pay the $20 before they’d do it!

The sum of the day was, I have prescriptions for 4 months of thyroid pills and 4 months of antidepressants, and a month of Ativan.  I also know my EKG is normal, my blood pressure is quite high (for me, not for an average person), and that the doctor’s x-ray machine is broken.  I feel such a let-down, I can hardly describe it.  I think it’s normal with FMS to be always hoping to find that magical person who will “fix” you, and even though I know that person doesn’t exist, I’ve found at three doctors who’ve come close.  Unfortunately, those three doctors are the ones who don’t practice anymore, or who’ve left the state, so I desperately want to find someone who’ll be proactive with me about my healthcare.  Not only is this the first doctor to try to deny my request to change antidepressants, he’s the first doctor to not give me any free samples, so it was an expensive day.  My one month of Effexor cost $108, and I don’t know what the Cymbalta will set me back.  I’ll find that out tomorrow.

Posted by Leigh-Ann on 07/12 at 08:35 PM
Tired Girls • (2) Comments • (0) Trackbacks • Permalink
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