How do I get my need-for-the-rest-of-my-lifetime prescription filled?

March 30, 2010 8:18 PM

I had all but a sliver of my thyroid removed in May 2007, when I was 20. I was under my dad's fantastic health insurance then. Since then, my dad has been laid off, and my health insurance through my work will not pay for anything until I've met a $2000 cap. I didn't make an appointment with my specialist for nearly two years, so he refused to fill my prescription for levothyroxine.

The specialist I was under when I had the surgery has since moved away, and I was referred to another specialist at the same hospital about two years ago. He is part of a large medical group at http://www.lutheranhospital.com. I saw him once, when he told me that I was fine and "almost" didn't charge me for the visit; he said it was a waste of time for me to have come in. That visit was almost $500, not including the blood test, which came back entirely normal.

I have been prescribed levothyroxine since the day after I had my surgery - as it must be taken daily - and I have never had a problem asking for refills. Yesterday, I accidentally spilled my bottle of pills and the remaining eight or so I had left went down the sink. On my work break today, I called my specialist and left a message, saying that I had no pills left and needed a refill. When I went to lunch, I had a voicemail from a nurse, who said, "We can't fill your prescription, since we haven't seen you in two years. Call your GP or schedule an appointment with us." Three months ago when I called and got a refill, no one said anything about this.

About a year or so ago, my GP refused to fill the prescription, stating that I had a specialist for my thyroid for a reason. I left a message to that effect on my specialist's machine and received no response, so I called my GP and explained that my specialist refused to fill my medication. After hassling me about not having my condition checked for so long, the doctor finally let his nurse give me a one time only 30-day prescription; if I don't have a blood test, he said he won't fill it again.

I refuse to spend $500+ for another "waste of time" visit, when I am doing perfectly fine on the medication I am on now and don't have the money to spend to prove it. I would also like to refuse to let either doctor hold my prescription over my head; if I don't go to my specialist for a visit or get a blood test, I will have no medication and no thyroid gland. I'm completely gobsmacked by the mentality both doctors have adopted. This medication was toted as being something I should never miss, lest I fall into a coma and ultimately die. Now it's being treated like a prize I can win.

If I had better insurance and/or a better paying job, I would love to go in, just to make sure I am as healthy as I feel and live. I understand that it's important, and I would be there if I thought I should be. What I can't understand is why they're both so worried about my levels being checked but so nonchalant about not filling the prescription that has kept me healthy for three years.

From what I've researched before posting, it seems that a private GP can refuse care. But is my specialist acting in an ethical, acceptable manner? Is this normal? Should I generally expect to receive the same attitude if I change specialists/doctors?

(1) You are not my doctor or my lawyer. (2) Anonymous because this is pretty personal and my screen name has my name in it. (3) throwaway: [e-mail]

posted by anonymous to Health & Fitness (24 answers total)

Damn. My GP manages my thyroid -- hell, the nurse practitioner at my clinic can manage my thyroid. I'm not a medical billing specialist, but that sounds like bullshit. Maybe start looking for a new PCP? If that's not an option, call around to free clinics or even Planned Parenthood to see if they can do the blood draw for you and phone in the prescription.
posted by KathrynT at 8:28 PM on March 30, 2010 [1 favorite]

Not thyroid-specific, but our family GP regularly asks us to see her or get blood tests before refilling prescriptions. Some conditions need to be monitored; sometimes dosages depend on what's going on in your blood.

Our GP monitors my partner's thyroid and prescribes his thyroid medication. If your GP will do it, that is probably more cost-effective than seeing the specialist again.

You sound very cranky, like you're in the first throes of upset about this. I know that feeling. You write like they're just trying to blackmail you into coming in, but more likely they're both trying to be responsible about your care. It's not "attitude"; it's not wanting to prescribe medication to someone they haven't seen in years. They're not offering you a prize for playing their little game, they're trying to get you to do what you need to do so they can treat you properly.

I'm sorry your insurance situation sucks; I have a high-deductible plan, too. Medical providers are very easy to set up payment plans with; I do it all the time. Most of them will let you set your own monthly amount that you can afford to pay. See the doctor, get the test, get your prescription, and get on with your life.
posted by not that girl at 8:32 PM on March 30, 2010 [4 favorites]

Have you checked to see what the standard of care is is for management of this condition/prescribing that particular drug? It may be standard for doctors to require a blood test every X years from patients on that drug. If, say they didn't follow the established standard of care, and you had bad effects from taking the drug without being monitored for years, this could leave them open to a malpractice suit.
They aren't just covering their legal asses, it also just makes sense that they wouldn't want to keep giving you drugs without bloodwork for a condition/treatment that is supposed to be fairly closely monitored. You might feel fine, but you don't know for sure that your levels are where they're supposed to be. Only the bloodwork can tell that.
Also, if you can't get the meds any other way, ask your specialist about a payment plan or if all else fails, you can go to the ER. They'll do a payment plan because they have to if they ever want to get any money out of the many self-pay patients they see. Or, like the others have said, look for a GP that will agree to monitor your condition, apparently they're out there.

IANAD/L, I just had a healthcare-related job for a while.
posted by ishotjr at 8:37 PM on March 30, 2010

I saw a dermatologist for years because of bad skin. When I was on tetracycline (and especially minocycline) I had to have blood tests done every 4 months. It was much more expensive to get it done at the dermatologists instead of getting an order and having it done at my regular hospital. Of course, it took the dermatologist a couple years before they told me I could get the blood work done elsewhere.

So I'd suggest telling your specialist you don't have any money and asking where the cheapest place to get bloodwork/lab results done is. Or just start calling around. For something as common as a thyroid test the local health clinic might do it for next to nothing.
posted by sbutler at 8:42 PM on March 30, 2010 [1 favorite]

While I understand your frustration and it seems obvious you need levothyroxine, I think your GP is right to require a blood test, which is a pretty routine and reasonable request. Your dosage may need to be adjusted and he is not a specialist, so he needs to be thorough. If you have not had your thyroid levels checked in two years, that's just as serious as having access to the medication. I thankfully have my thyroid, but have hypothyroidism. It's very difficult to get a script or increase in dosage because if you are overmedicated it can be very dangerous and cause serious complications that will also be way more expensive down the road. I know it's frustrating, but it really is for your own protection.

As for the specialist, can you contact your former specialist, explain the situation and ask for a referral to another doctor? While it sounds like this specialist gave you poor medical care, I don't think what he did is illegal, but I'm not a lawyer or a medical professional, for that matter. Since he's part of a larger group, perhaps you could call and get some redress in the form of refunded money or, with verification of a blood test, a 6 or 12 month prescription without being charged for another visit. Best of luck!
posted by katemcd at 8:44 PM on March 30, 2010

You absolutely have to make friends with a nurse at the specialists or GP's office in order to get the information you need. Those are the people with the time, resources, and access to information on how to take care of yourself as economically as possible. Find someone who has a moment, and tell them that you are scared and need help. Opening a conversation this way tends to yield the best results.
posted by letahl at 8:57 PM on March 30, 2010 [1 favorite]

You're not facing a $2000 cap, it's a deductible. It sucks, but thats what the name of the game is. $2000 is high, but the trade off is lower premiums.

A health savings account can be used to pay deductibles, co-pays and prescriptions. (and other things like cold medicine and sunscreen). Not a short time fix, but you more or less get a discount on this money (it's not subject to taxes, except social security). Set one up and start feeding it.

I can understand the point of view of the doctor. Prescribing things from charts and over the phone to a patient not seen for over a year is not legal, or good practice. You were lucky for 3 years.

Yes, this is fucking with things as fundamental as your functioning body. Welcome to American health care. Proper use of your body needs to be paid for and profited from. Now with slightly less horrible insurance!
posted by fontophilic at 9:00 PM on March 30, 2010

Nthing the necessity to get a blood draw for further meds; monitoring levels is crucial to your treatment, which I've learned as the husband of someone with hypothyroidism. Her levo script has changed three times in the last three years, up up and then way down.

Go see your GP, hopefully tomorrow.

Also, bitch out your job for having shitty health insurance.
posted by incessant at 9:01 PM on March 30, 2010

You do need to see what the TSH levels are , so that proper dosage of the levothyroxine is being taken. You can try the "Any Test Lab" for the thyroid panel and have it sent to the GP.
I've heard that some generics can be obtained with a valid Rx through internet sources, and some are reputable.
posted by Agamenticus at 9:03 PM on March 30, 2010

It sounds like your GP will write you a prescription if you get a blood test. You don't need to see a specialist to get your blood test done. Call and ask how much it costs, it should be far less than $500. You might be able to go to an independent blood test place if your GP has some sort of fees on top of the blood test.

If you look for another doctor, ask how much appointments cost when you call to make one. If the person who books appointments has no idea, or says "we'll bill your insurance", that means it's expensive. Call someone else.
posted by yohko at 9:04 PM on March 30, 2010

This is reminding me of how women have to go to the gynecologist before being allowed BC prescriptions. It's an enforced checkup, and really, there's nothing you can do to get around it. I hate to say it, but I think you're gonna have to jump through the hoops. The #1 priority is getting the dang medication so you don't die, you have no leverage to get around that.
posted by jenfullmoon at 9:11 PM on March 30, 2010

It's my understanding that you can only get a health savings account if you have certain kinds of health insurance. My insurance plan has a $2500 deductible, but is not eligible for a health savings account (this is in North Carolina, in case that matters).
posted by amtho at 9:15 PM on March 30, 2010

You're angry because your doctor actually wants to see you with their eyeballs and get an objective reassessment of where your thyroid stands once every two years, instead of indefinitely phoning in prescriptions? Look I know this is not what you want to hear, but you are essentially demanding that your doctor provides what they consider to be substandard care and expose themselves to considerable liability because you think the visits are a waste of time and money. Does what they think matter in how they practice medicine or are they just vending machines for your prescriptions?

If a patient and physician can't see eye to eye over their care (and care includes a regular follow-up schedule) best practice would probably be to give you a small supply of medicine and refer you to someone else. Of course, good luck finding a replacement doctor that will refill a prescription drug indefinitely without face-to-face follow-up, or essentially provide ongoing phone consultation without any reimbursement.

To answer your questions, a) I think your specialist acted relatively ethically because one could make the case that it would actually be more unethical to acquiesce to your what you want. Again, better practice was what your GP did by providing a brief refill and essentially verbally contracting with you to make sure you have time to arrange to have the appropriate follow-up. b) Yes, your story is completely unsurprising and not abnormal IMO. c) Yes, you will have a very hard time finding a physician that will do what you want. Though of course, I hear people order all manner of drugs online (I would NOT recommend that).

Direct your tantrum at our system and your employer for not shelling out for a decent insurance plan.
posted by drpynchon at 9:18 PM on March 30, 2010 [8 favorites]

The system is totally bonkers, we all agree.

Still, you must get your blood checked every now and then. This means probably once a year even if you feel fine, because your thyroid can keep slipping as you age, and the difference each day is so slight that you won't have a proper baseline against which you can measure it.

If you wake up one day and your arm is black or you can't breath, the change is so sudden that you're prompted to act. If you have a known hormonal condition, it's very good practice to get your levels checked routinely precisely because there isn't an accurate day-to-day gauge for hormones.

If you don't like this GP, find another one. But assume you need to get your blood checked; hey, if it's still stable, you have a good idea of your continued baseline, which will be helpful when your numbers change down the line!

Ask your GP how much a thyroid panel/screen will cost. Ask if there are more economical options in the area.
posted by barnone at 9:18 PM on March 30, 2010

Yeah, my GP won't refill my levothyroxine script either without a yearly blood test. The most I can convince any clinic to give me is 30 days as well. I understand the reasoning; my dosage has definitely changed over the years. Heck, my GP was the one that realized that the reason I was so tired was because my dosage was no longer working for me, after being fine for the better part of a decade. Sorry. It sucks, but you need your pills.
posted by cgg at 9:27 PM on March 30, 2010

From what I understand about this condition due to a close friend who has it: It would be extremely unethical for a doctor to prescribe the medication without seeing you and drawing blood. This is very normal. I'd be suspicious of any doctor at this point who didn't require these things.
posted by TimeDoctor at 9:31 PM on March 30, 2010 [2 favorites]

"From what I've researched before posting, it seems that a private GP can refuse care. But is my specialist acting in an ethical, acceptable manner? Is this normal? Should I generally expect to receive the same attitude if I change specialists/doctors?"


Your doctor is not refusing care. He/she is requesting you come into the office for lab tests and an exam - i.e. "care." It would be irresponsible for any doctor to prescribe a medication to a patient he/she has not seen in two years. It's very possible your thyroid needs have changed over the years... you probably know by now that regulating L-thyroxine dosing is not easy.

Sucks that the visits to your specialist are so expensive. In my experience (as a pharmacist) lots of GPs prescribe thyroid medication for their patients. You could try making an appointment with a new GP for both a physical (it's been two years?) and a blood test. It won't be free but hopefully you won't be out 500 buckaroos. Good luck.
posted by keribear at 9:32 PM on March 30, 2010

I agree with pretty much everyone above, but wanted to offer a suggestion for the future. See how much your insurance covers for a basic "preventive care" physical. Sometimes those are covered by a copay instead of making you pay the deductible before they pay for it. Also, if you are female, see what they cover for a "well woman" yearly checkup. Find a doc (your GP or a new one) who will do the basic physical and who will make sure the thyroid panel is included in your labwork. They get to check your level, you get the script, and it's cheaper overall. No need for a specialist until you start having problems.
posted by MultiFaceted at 9:48 PM on March 30, 2010 [1 favorite]

Forgot to add that if the insurance covers your GYN appt at a cheaper rate, see if they could run the bloodwork. They may not be able to do it in their basic rate but it never hurts to ask.
posted by MultiFaceted at 9:50 PM on March 30, 2010

I was diagnosed with Hashimoto's thyroiditis almost twenty years ago and have experienced the situation you've described more than once. Under best practices the doctors would check my thyroid levels every six months, but when I've transitioned from doctor to doctor for various reasons I've frequently had some lag. I've been fortunate enough to have family friends who are doctors call in a scrip for me and just paid for it out of pocket. That's one of the nice things about thyroid meds: compared to antihistamines or antibiotics, they are dirt cheap. I always pay for my thyroid meds out of pocket now, as they cost less than my co-pay. AS for thyroid testing, I've paid somewhere between $70-120 for a TSH. I haven't seen a specialist in ten years. Your GP should do this.

And your doctor should call you in a scrip for enough meds until you can get a test. Ask for a weeks worth of meds to bide you by.
posted by Sara Anne at 9:51 PM on March 30, 2010

I have had thyroid issues since my early 20s -- first Hashimoto's disease, then thyroid cancer. (And I didn't have any health insurance during the first several years of that crisis, so I can tell you stories about our broken health care system that will make your hair curl.) There are only two ways by which a responsible health care provider can assess your health vis-a-vis your TSH, T3, T4, Tg, etc.: the first is by blood work (annually at the bare minimum), and the second is by being a psychic.

Of course, there are no goddamn psychics, so suck it up and get the blood draw. In the grander scheme of things, $500 is a small price to pay for your health and, ultimately, your life. The fact that you feel fine on your current dose of meds is useful for your doctor to know, but it is by no means definitive. I felt fine on my old dose too. I had cancer anyway.
posted by scody at 10:43 PM on March 30, 2010 [1 favorite]

This is reminding me of how women have to go to the gynecologist before being allowed BC prescriptions. It's an enforced checkup, and really, there's nothing you can do to get around it. [...]

posted by jenfullmoon at 9:11 PM on March 30 [+] [!]

jenfullmoon, refusing birth control without gyn exams is far worse because gyn exams and pap tests actually have no relationship to using birth control pills. Yes, there ARE ways around it, including going to a decent doctor (yes, they are out there) or going to Planned Parenthood. In the case of thyroid meds, the blood test results are actually used to determine the drug dosage, so it's not unethical in that way.

That said, the patient should have been told the previous time they got a refill that they would need an appointment before the next refill, and it's totally common for GPs to prescribe thyroid meds. No one should go to a doctor that makes them feel coerced, so this poster needs a new doctor.
posted by Violet Hour at 12:30 AM on March 31, 2010

Nthing everyone else here - I have hypothyroidism and have to get my levels checked annually and guess what - they've changed from time to time even when I was feeling ok. You should be able to find a GP who will cover you and $500 is high for the blood work - they may be testing more than thyroid levels for that price. It is unfortunate that their office didn't alert you when you refilled it last but it's neither unethical nor bad medical practice to require you to be tested especially when this is all fairly recent after having the surgery!
posted by leslies at 4:37 AM on March 31, 2010

My only advice is to echo the above comments and to find a better GP. I don't have a lot of experience with doctors, but that combined with observations from my friends and such, there is a wide variance in doctors' "theory" of care. Some doctors believe in the "order every test to be abundantly sure" theory, others are more easy going about it.

My experience is that finding a practice with many doctors and their own facility is going to be more cost effective than the one-off sole practioners. The small practices generally have to send you to a hospital for any tests that can't be done in the office. This is expensive and a hassle. The larger groups can afford to have their own lab for a lot of tests, and can send out the rest to the equivalent of a mail order place.

They may not exist all over, and they may not be as good, but my doctor's group is fantastic. The GP is the first line as usual, but the difference is they can say "I think you might have a fracture- go down the hall and get an xray, and then bring it down the other hall to Dr. Ulna and have them check it out." I have literally walked in with a "I fell and my arm hurts" complaint, and walked out a couple hours later with a cast. Another time I was having a checkup and asked my doctor about a cyst. He said "I think Dr. Scalpel is working today, go down and have him check it out." Half an hour later I was on my back in their OR getting the thing hacked out.

And even more importantly, because they are all part of the same practice, the billing is combined and sane. I'm not getting bills from 8 different places for one health "event". The doctors can worry about doctoring, and the billing department can worry about collecting. The GP and the specialist don't have to charge their full rate because they all work together. If you can find a place like that, it is much easier to feel good about paying the bill.
posted by gjc at 5:52 AM on March 31, 2010