Script my week of lousy doctors appointments?
February 25, 2024 8:34 AM   Subscribe

As is clear in my question history, health stuff has been rough for me the past few years. In the next three weeks, I have (hard won) appointments with each of my specialists and my family doctor. I really need to get this right, but there are a lot of complications. I could use some help seeing the forest because it feels like I'm being smacked over the head by a whole load of trees.

This is going to be a bit of brain dump as I'm not firing on all cylinders and also pretty upset about this situation.
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I will be seeing Dr. G, my gastroenterologist on Tuesday. Dr. I, my immunologist next Monday, and Dr. F, my family doctor the following Friday. I live in the greater Boston area, all of these folks are associated with major research universities, well regarded in their field, etc.

However. There have been a lot of problems with my medical care largely centered around the GI doctor.

I've had severe alternating diarrhea and constipation for the last 5 months, had an irregular colonoscopy (erosion and inflammation) which Dr. G performed 2 months ago, and most recently SIBO which was actually diagnosed by my immunologist but Dr. G was willing to prescribe the medication she suggested.

The problem is that other than that. He has done nothing. He seems to have no ideas of his own but is very obstructionist-- for example Low Dose Erythromycin is now a fairly standard medication for people with SIBO and/or motility issues. But he wants to have me take a full strength antibiotic, Tetracycline, despite my awful reactions to it in the past. My immunologist initially said that she would prescribe it, but then changed her mind after reading his note which said he did not recommend. (This is after her telling me that Tetracycline was a bad idea and that she recommended the Low Dose Erythromycin.)

My immunologist has suggested that there is a specific inflammatory bowel disease associated with my immune condition and if GI confirms it as a possibility, it will open some interesting treatment options. But I'm afraid he's going to say no. And that will then go in my chart and the same problem will repeat itself.

I am trying to switch GI doctors, but that is a time consuming process and none of my other doctors are willing/able to step in to fill that gap in the meantime.

Similarly, my family doctor, who seems like a smart and nice person won't discuss or trial any of the medications being floated as possibilities for Long COVID ME/CFS without running it by various specialist who of course respond that there are no double blind studies confirming efficacy so...no. These are innocuous medication (think a non-stimulant ADHD medication. And all of them are new enough that the only research is under powered and will be for some time.)

I feel so stuck. Like professional courtesy to other doctors has supplanted good patient care and that the idea of research-based medicine is being taken to such an extreme that common sense and humanity are being lost.

My actual question: How would you use each of these doctors appointments to maximize the chances of receiving helpful care? Are there scripts you would use? I'm always calm, prepared and polite in these appointments but it's not getting me anywhere. How can I get around the GI doctor in order to work more effectively with the others? I am ready to stop thinking about this all the time.
posted by jeszac to Health & Fitness (8 answers total) 2 users marked this as a favorite
 
Best answer: Your best bet is to find a different GI doctor. You stated that you're trying to do this. That's good, and it could be the resolution to this whole issue. Doctors are like hairdressers, they are all licensed but only about 5% have the talent to cut your hair just the way you like it.

The word "polite" in your post could be a sticking point. Maybe it's time to just sock it to 'em. I suggest printing out your post and handing it to each of the doctors to read. They work for YOU, you don't work for them.
posted by SageTrail at 9:25 AM on February 25, 2024 [2 favorites]


Best answer: What happens when you question their reasons? For instance, did you push the GI doc to say why he thought the full strength tetracycline was a better idea? I’ve had luck (in certain circumstances) with bringing research papers/citations in that scenario. So the script would look something like this:

GI: I’m going to prescribe tetracycline.
Me: I’ve read that Low Dose Erythromycin is often prescribed for SIBO. Why is tetracycline the better option?
GI: Well, I’ve seen a lot of these cases and tetracycline works the best.
Me: I found this paper (insert citation) that’s a recent meta-analysis showing LDE is superior to tetracycline. Since I’ve had issues with tetracycline in the past, could we try LDE?

Obviously, this doesn’t always work. You have to walk the line of being sufficiently deferential while still challenging them. The GI doc may still decline your request. If you have MyChart, or a similar messaging platform, you may have luck with asking the question there. The advantage is that the exchange, by its nature, is written in your chart. It’s sort of like skipping to the strategy some people recommend of asking the doc to record in their chart that they are refusing to run requested testing. It puts the doctor on their best behavior, cause it’s on the record.

For your PCP, bringing citations may help them feel more comfortable prescribing meds in an area they’re unfamiliar with. For that conversation, I’d approach it as “I know there aren’t a lot of established treatments in this area, since it’s such a new issue. I found these articles showing this medication is helpful for my symptoms, with low risk of side effects. Would you be willing to review them and consider prescribing (med)?” Obviously, if possible you should try to get in to a long covid clinic, as they will be much better equipped to help in this arena.
posted by bluloo at 10:06 AM on February 25, 2024


Best answer: Is it possible for you to bring someone with you to the appointment to advocate for you? A friend asked me to do this recently and I could not believe how much kinder and clearer the doctor was to me than they had been to my friend.
posted by CMcG at 10:09 AM on February 25, 2024


Best answer: Agree with CMcG's suggestion above, especially if you are female or female-presenting and have a male friend you can bring with you. The GI doctor in particular sounds like he might pay attention to a man. I am aware of how infuriating this is, but it might be the best way you can make the visit to him useful until you can find a better GI.
posted by Athanassiel at 10:25 AM on February 25, 2024


Best answer: Before going to your appointments, think about and define:
  1. What is your desired end state, meaning the state you feel you are "cured" or the conditions are well managed so you can be in maintenance mode indefinitely?
  2. What are you willing to tolerate for now, while you are still diagnosing & treating the active issues? For how long are you willing to put up with it?
  3. What would be intolerable even in the here and now, in terms of side effects?
If it helps, you can also think about it as best, ok, and worst case scenarios. The important thing is to define it well so you and your doctor can test against it.

Bad example: I want to get better. I can only tolerate mild side effects.
Good example:
  • Desired end state is for the constipation and diarrhea to completely resolve within 2 months.
  • For the next 2 months, I can tolerate constipation if it can be managed with daily fiber supplements and stool softeners.
  • I cannot tolerate puking everyday or full body hives or whatever.
So when you see your doctors, try not to get too caught up in what they are prescribing or the next test/treatment. The question always is: Does this fit into the three states you defined above? The goal is basically to make the doctor say out loud in their own voice/words that YES they want you to feel awful for a span of time (and hopefully make them realize what the heck they're actually forcing you to live with) or NO actually that is not OK, so try something else now instead of later.

At least with my doctors, when I come at them with "Can we try X instead?" they don't like it because it's their job to come up with solutions. It's like I'm questioning their intelligence or expertise. But when I tell them that X doesn't actually solve the problem, or X maybe solves it but then introduces a bigger problem Y, they are still in control of the decision-making process, and they seem to like it better.

GI Dr: I'm prescribing [whatever].

You: How can I tell that the treatment is working? What positive effects should I start to see, and at what point in time?
You: Will this completely clear up the SIBO, and fix the constipation and diarrhea within 2 months?
You: I took [prescription] before, at this [dosage and frequency], and I had [one of the really bad side effects doctor listed].
You: Are you saying it is OK for me to have [awful side effect]?
You: How long would you say is ok to keep tolerating [awful side effect]? How can I then [live my life, take care of my family, work...]
You: At what point would you say that a reaction is intolerable, and we should consider other treatments?
You: If there is an intolerable reaction, what can I do to immediately change the treatment plan? (i.e. how to get in touch with his office sooner and not have to sit with the bad reactions until the dr has another opening in their schedule 2 months later)
posted by tinydancer at 11:13 AM on February 25, 2024 [5 favorites]


Best answer: Primary care physician here: one of the drawbacks of referring to a specialist is that you pretty much have to do what they say after. Even if you don’t really agree with it. Your PCP may be able to help you find a new gastroenterologist but they won’t want to treat a gi condition against the recommendations of you existing gastroenterologist. And asking them to is likely going to strain your relationship.
posted by genmonster at 1:06 PM on February 25, 2024 [2 favorites]


Apologies in advance if this is an uninformed idea since IANAD, but thinking about the sequence and that the GI doc is the worst, could you get them to declare the problem out of their field of expertise, beneath them, or needs input from someone else, i.e. to resign? If they noted that they recommend this be treated by the immunologist or family physician, then you could work with someone who is a better listener. Maybe others will know if that's a good idea and how to get it to happen.
posted by slidell at 6:37 PM on February 26, 2024


If the options above don't work, to get the LDE prescription in particular, you can say, "Taking tetracycline is not an option for me. It [list terrible effects]. Are you saying that no treatment at all is better than trying out LDE?"

If all else fails, I found a prescriber (a rheumatology specialist, but anyone would do) who is pretty much willing to write a prescription for whatever I want that's not clearly harmful. If you start using something and it works, other doctors are more willing to get on board. (This is also true if you opt to try some things out without a prescription; that's how I got my primary to start prescribing armodafinil.)
posted by metasarah at 1:00 PM on February 29, 2024


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