Doctors Who Don’t Listen: What Part About This Medication Doesn’t Work For Me Do You Not Understand?
by Hospital Ratings & Reviews
Filed under Thyroid
The Armour Thyroid Fiasco and The Run Around of Getting the Appropriate Replacement Natural Dessicated Thyroid Medication
Dear Readers, Since we first published our post regarding how Armour Thyroid Medication was reformulated we’ve received hundreds if not thousands of emails and requests for updates from those of you out there who are in a similar situation. I can totally empathize with everyone who has wasted time, money, and precious energy on trying to come up with a replacement medication. And even though I have been perfectly happy with my change to Nature-Throid, my supplies were dwindling and the promised shipment dates of the middle to late November by RLC labs, are now looking like it may be December before it is available, and I wanted to make sure that I don’t run out of the medication that I must take every day for the rest of my life, because my thyroid was removed several years ago.
What perhaps is the most frustrating thing about this scenario, is that my doctor, who had no issue with writing a prescription for Armour Thyroid and then replacing it with Nature-Throid, simply doesn’t seem to understand that I must find a replacement for my natural desiccated thyroid medication and I will not, under any circumstances go back to using Synthroid. Here is a summary of what has transpired thus far on my quest to get my doctor’s office to write the correct prescription for me.
“Dear Doctor”, what part about “This Medication Does Not work for me” do you not understand? Please do not disregard my ability to tell what works for me nor discount my intelligence by thinking that your version of a synthetic medication will work just fine for me. We’ve already been down that road before, and it was a long one. I was the one who had to find out that I had the thyroid problem to begin with, because for years, the proper testing was not done and I watched in horror as my ability to function declined. I traveled to many doctors during this time with a list of symptoms that would have made any learned diagnostician proud, but I was not listened to, and treated with disrespect at many a turn. From the rude and dismissive Nurse Practitioner in the Endocrinology Clinic at MD Anderson who gave me a cursory exam and proclaimed that my “thyroid was fine” to the many internists who sent me to the wrong kinds of specialists, or who simply threw up their hands and told me that gaining inordinate amounts of weight, losing my hair, feeling like my body was run over by a truck, not being able to walk around the block, much less run for over an hour like I used to be able to do easily, was part of “getting older” and I should just deal with it. At first, I thought so many doctors not being able to find anything must have meant that I should “deal with it”. I mean distance runners don’t complain you know? You just keep going, even when you think you can’t go another step, you keep going. So I did, but I also knew something was very wrong, especially when my ability to function declined so far that I could barely go to the grocery store without having to sit down and rest. And when I showed up at the Mayo Clinic with my self proclaimed diagnosis in hand and asked the doctors there to confirm it, at first I was met with a “yeah, right” attitude, but after testing and finally a thyroid surgery, my suspicions were confirmed, and after a long period of trial and error with thyroid medication, had finally found my rhythm back after dumping Synthroid and getting on Armour Thyroid. Fast forward to Armour’s reformulation and switching to Nature-Throid, and finally getting that dosage adjusted. So if you are going to be my physician you’re just going to have to accept that I have a really good handle on what works for me and what doesn’t. And I finally trust myself enough to know that it is my body and I do know what is helpful and what is not.
I have called my doctor’s office and asked them to write me a prescription for “Thyroid” simply, “Thyroid” because that is the way it needs to be written in order for me to get my prescription filled in Canada. And I’ve also asked my physician’s office to write the prescription in grains not milligrams, so that I have some flexibility in re-filling the prescription with any natural desiccated thyroid that is available and not a particular brand, once this shortage clears up. The response to my very specific request from my physician’s office was to have a prescription faxed to me for levothyroxine which is the synthetic version of a Thyroid Medication called Synthroid, which has never worked for me, and my physician knows it doesn’t work for me, and I will never take this medication ever again. Thinking it must be a mistake, I called my doctor’s office and told them that I had received the “wrong” prescription, and that I was faxing them the specific information on how my prescription must be written so that I could get the Natural Dessicated Thyroid Hormone from Canada. My fax outlined exactly how the prescription needs to be written so that I can get an appropriate replacement medication from Canada, and provides the reason/s which my physicians office is already aware of because they have other thyroid patients, for my needing to order thyroid medication from Canada. Several days later, I receive a call from my local pharmacy saying my prescription was ready. I called the local pharmacy back, because I hadn’t placed an order with them for any medication (they don’t carry what I need now) and low and behold, the prescription waiting for me was for levothyroxine, or Synthroid. UGGGGH…… Did the physician’s office think I wasn’t going to check the prescription, or worse yet, that I don’t know what levothyroxine is? Good grief, I know everyone is busy these days with the swine flu going around and the shortage of natural thyroid hormone adding to the workload of everyone, but this is ridiculous, that it is so difficult to get the proper prescription written. Luckily, I am very knowledgeable about my body and what types of thyroid medications work for me, but there are others who are not, and who rely on whatever their physician writes down and then simply take it. Tomorrow, I will call the office again and see what the issue is with getting a proper prescription written. It is indeed an ongoing struggle to advocate for oneself in a system that is sometimes very unhealthy itself. But the payoff is worth it. Getting my thyroid issue under control has given me a new lease on life. I know it’s an ongoing battle, like now just trying to get the proper prescription, but I’m not stopping and I won’t settle for less than optimal treatment any more. And I just completed the Susan Komen Race for the Cure this past Sunday in Austin, Texas. It felt amazing to run the 3.1 miles at a good pace and come through the finish line strong and with energy. And even though this was a short race it was fabulous to see all the pink shirts, the zest of the participants and to have a reason to run. I want to thank all the volunteers who gave of their time and who stood out on a Sunday morning and cheered for all of the runners and later the walkers who walked the course. Do you know how terrific it felt to cross the finish line and have all kinds of people clapping and cheering? I ran for not only all of the brave breast cancer survivors but for those who were not there and could not be there to run for themselves. I ran for all the women and men who are dismissed by their physicians or who are told that feeling poorly is simply part of the aging process. I think not! I ran because I could run this year, and that was an accomplishment in and of itself.
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Excellent letter. When there was a shortage last year, my endo’s office told me to just take Synthetic. I explained to her that I have reactions to Synthetic Thyroid Hormone. I was able to get it filled, but I can’t guarantee that those words woudn’t come out of my Endo’s mouth next time. This possibility is enough to keep you awake at night…worrying about being put back on Synthetic Thyroid Hormone. I’m not doing perfectly on Natural Thyroid Hormone, but it would certainly be depressingly, horrifying to be put back on Synthetic!
Hi Lee,
I’m glad you’re doing well on the Natural Thyroid Hormone. It is enough to cause all of us to lose sleep….thinking that our options will be even more limited than they are now. Thanks for your commenting and for sharing that you spoke up when your endo suggested “just to take synthetic”. It helps so much for others to hear that it is “ok” to not blindly accept a suggestion from your doctor when you know it won’t work for you. Take care and appreciate your stopping by.
Hello all.
It is never ok to just take blind advice from your physician. If I had, I may not be her now. I am extremely proactive about my healthcare. Always ask questions. Research! If your doctor doesnt listen to you FIND ANOTHER!
I had been in the exact position the author was in; regarding my thyroid,fibroid tumors,and a deadly heart defect and murmur.You would laugh in shock if I told you what I was told.I am blessed now to have two doctors who are completely receptive to my physical intuition,and take the time to really listen and address my concerns.
I am also in the thyroid medicine tangle-both armour and synthroid never worked for me-Im also allergic to the fillers.I went to naturthroid early on-now Im getting a custom compound made locally-until that runs out.
Kudos to you author, for standing up for yourself and challenging the “god complex” in physicians allowing yourself to get what you need from your health care providers : )
Sincerely,Jenny
Hi Jenny, thanks so much for writing. It is most appreciated and I’m glad you’re taking charge of your own health. It’s a struggle sometimes but so worth it! If you’d like to share details about your particular experiences…please feel free to do so. Although alarming to read sometimes, I always find strength in hearing how others have persevered through the health care system and it’s obstacles, and I think it helps everyone to know that there are much more similarities in all of our struggles than there are differences. Anyway, way to go on getting docs to work with you who are providing you with good care…and please know that your story is welcomed here if you you would care to share!
After a 20 year battle I no longer feel alone, thank you for sharing your story. I was diagnosed with thyroid disease when I was four. I took synthroid my entire childhood, because that is all that we were told was available. I have battled all the symptoms of an underactive thyroid. I had tried everything. I am juvenile diabetic and for many years it was dismissed as diabetic issues. I finally found a doctor who listens to me, unfortunately I had already gained 70 pounds in 5 months and I was wearing a wig from the hair loss, I had ruined every relationship I had with my inability to function, communicate and be happy despite my intense efforts, I knew something was seriously wrong. I am on a compound, feeling better and still trying to find a common ground. I also have an iodine deficiency which is rare in the states and essential to the thyroid hormone. My advice to anyone, Find a doctor that cares about you! I will soon be running my 2 miles a day, but for now I am resting taking the proper meds and letting God heal me on his time. Good luck to anyone battling the war with westernized medicine, my prayers are with you.
-Faithful
Dear Faithful, It is I who thanks you for sharing your story. I am so grateful for the comments and for knowing that so many of us with thyroid issues are not experiencing these challenges alone in getting appropriate care and treatment. Good for you in finding a doc who listens. Thank you again for sharing your story and please come back and update here as your journey continues. I’m convinced that if we all share our knowledge and experiences on what works well, what helps and what doesn’t, that we are and we will be helping to educate the physicians who care for us.
Can’t believe I found this article. I’ve been losing my hair, gaining weight, and feeling like I’ve been glued to the couch for months. Of course, my doctor says “everything’s great’, but obviously i’t NOT. Was doing fabulously on the “old” Armour and didn’t even know they had changed anything. Who Knew? Thank you for sharing your experience…can’t believe I was having all my old low thyroid symptoms and no one would acknowledge that it could be my thyroid medicine. I’m asking for a new prescrption tomorrow. Why did they change the old Armour? It was my saving grace after years of being on Synthroid which never worked for me. Now, they go and change it! At least I found a possible solution here on this website. Very grateful for your info.
So that explains why I’ve felt so rotten lately. Couldn’t get my endocrinologist to help me or admit anything could be wrong. Why is it so hard to find a good doctor? Do you have any suggestions for searching for someone who will actually listen? I’ve been without a thyroid for the past 5 years and it’s been nothing but a roller coaster of trying to find the proper medicine…then when I finally found something that works…they went and changed it!
I had RAI in 2008 and have been on Armour since… but when the supply ran low, my dr wanted to rx a synthetic, which i refused. I ordered the “Armour” from Canada – problem is, since switching to the Canadian meds, my TSH has fallen by 50% and I have the same symptoms I had when i was very HYPER-thyroid! My PCP says everything is fine… it’s not. I am trying to find a naturopath/endocrinologist in my area, but am not having much luck. This whole situation is unbelievably frustrating!
Eva,
I changed to the Canadian type of Thyroid medication also. Had to adjust my dose to take a smaller amount of the Canadian thyroid medicine because I had gotten a tip on this site from someone else who had done so. Apparently, there are small differences in the amount of T3 and T4 in the different kinds of thyroid medicines and that, along with the filler differences, may mean that we all have to tweak our doseages if we switch brands or change medications. It is incredibly frustrating, I loved the old Armour, and initially when I switched to the Canadian version I didn’t think it would work because I felt too energized which actually at the end of the day made me more tired. I know, it’s confusing, but being jittery made me exhausted sometimes. What I finally found out from another thyroid patient was that I could split my tablets, so I got a pill spitter and reduced my dose by 1/4 of a grain. I finally feel normal again and am not jittery or too wired. In my case I found that most doctors weren’t very helpful or knowledgeable about this, mine didn’t even know that Armour changed their formulation until I printed off the info here on this site and brought it into him. I am now taking 1/4 grain less of the Canadian thyroid then what I took of the old Armour. I’ve heard from other thyroid patients that some of them had to reduce their medicine as well, while others told me they had to increase their dose slightly. So I guess it all depends upon your body, and how it absorbs the medication, and how much T3 and T4 your body needs. But if you’re feeilng too hyped up or hyper then it may be that you may need less of the Canadian version then what you were taking with the Armour. I have a pill spitter that I used to cut my tablets into 1/4ths, and that gives me a way to cut down my dose without having to refill my prescription. Not saying anyone else should do this, as I’m not a doctor, just a thyroid patient too, but it worked for me. Hope you can find someone in your area to help you. This shouldn’t have to be so hard for us!