I'm Really Upset! Doctor Throwing Up Red Flags?? (HRT Med Concern)

[Dawn Heart]

Yesterday, I saw my doctor for the final "medical" portion of my pursuit of HRT in the program I am in that offers this on the informed consent model. Prior to this appointment yesterday, I looked up the various problems MTF transitioning people can have on HRT based on Estradiol and Spiro usage. The doc was told by me that I know about the long list of really life threatening adverse effects that can happen on Spiro, and asked if there was anything safer. The doc replies "Well, we really don't like when patients look things up because it just causes you (patients) to get nervous"  THAT was a telling moment! THAT was a red flag to me, so I took my copy of my scrips home (the doc sent them electronically to the pharmacy I use). What doctors DOESN'T want their patients to know everything they can? When I hear things like this, my antennae go up!

I do some more looking around today because I recognize that the life threatening effects that are possible on Estradiol are treatable and reversible, not so much with Spiro. Come to find out that Spiro has sulfur based metabolites in it. Wait RIGHT THERE!! I am allergic to sulfa/sulfur drugs and sulfur/sulfa content. This fact is in my chart, and even noted on the paperwork she gave me. What was this doctor thinking? I looked into Androcur only to find out that there have been many liver related deaths reported in Androcur users. THAT isn't an option either.

I am just glad I found this out about  the sulfur content of the Spiro before picking it up and taking it! I could have ended up in some real danger! Any thoughts from any of you out here?   

[Ms. OBrien CVT]

Check with your doctor.  She may have already taken into effect that you are allergic to sulfa/sulfur.  I only check for interactions.  I trust my doctor enough to be aware of interaction and possible side effects.

[Ellieka]

I think your doctor may be right. While it is good to be informed... All the "possible" side effects are just published to protect the pharmaceutical company. Doctors spend years learning how medicine works and how it can affect a person. That's why they asses you and your health, to see if there are any likely complications. If they see them they won't prescribe the meds.

[Devlyn]

I wasn't there, but when you said:

"The doc was told by me that I know about the long list of really life threatening adverse effects that can happen on Spiro, and asked if there was anything safer."

It seems like he said...

"Well, we really don't like when patients look things up because it just causes you (patients) to get nervous" 

....as a joke trying to allay your fears. Of course doctors want knowledgeable patients. There are more than one way to look at every conversation,  I'm afraid you may have taken the doctor the wrong way. Again, I wasn't there. Hugs, Devlyn

[Jamie D]

Here is the basic sulfonamide group molecule, the basis of "sulfa" drugs:



Here is the molecule for the common diuretic Hydrochlorothiazide:



Here is the Spironolactone molecule:



You will notice they are quite different.  Furthermore, if the mere presence of sulfur in a molecule bothers you, please stop eating onions, leeks, chives, garlic, broccoli, cauliflower, Brussels sprouts, cabbage, kale, asparagus, sweet potatoes, and tomatoes.

And don't forget, beef, chicken, fish, most nuts and legumes.  Oh, and pineapple, banana, avocado, grapefruit, and watermelon.

One more thing - don't sweat.  Human sweat and urine contain thiols (mercaptans) and other sulfur-based metabolites which give them its scent.

Dawn Heart, if you are really interested in the subject, talk to your pharmacist and find out the course-load he or she took to more fully understand elements of biochemistry.


Here is my non-medical opinion. because I have allergies to some medications too.  If you start by taking a small dose of Spironolactone and if you break out in hives, call you doctor.  That is what the list of contraindications says on the printouts I get with every prescription.  That will probably be what your pharmacist will tell you too.

"A little knowledge is dangerous."

[Shantel]

I always go to the pharmacist and describe my allergies and tell them about any meds I'm already taking. They have all the facts in front of them and can give you the straight story. I have learned that all doctors aren't as well versed as the pharmacist is and often prescribes on the basis of what their drug sales reps tell them which means that there's a potential of conflict of interest. Case in point:

I had an enduring infection that dropped into my chest so the doctor prescribed the "Godzilla' of all meds that would kill it with only ten capsules at $200. I went across town to a Sunday brunch and got out of my car I walked up to the front door of the place still in the sitting position. My wife said, "OMG what't the matter with you?" we turned around and went home, I contacted the pharmacist who said that these pills have a side effect on 15% of patients that gives them almost zombi-like behavior. He told me to quit taking them right away. I called the doctor on Monday and told him what happened and what the pharmacist had told me, and his response was "Baloney, you keep on taking them!" I had to yell at him to prescribe an alternative drug. This particular doctor graduated Magna Cum Laude at the top of his med school class at U of W. So following that experience I most always have a little chat with the pharmacist that is filling the prescription just to be on the safe side. Doctors kill more people than guns do at ratio of about 10-1 each year.

[Jamie D]

Shan, you know what's even worse?

[Devlyn]

Ew! Doctor Furr will see you now.

[Shantel]

Shan, you know what's even worse?

My mind went instantly to the finger wave...ugaaahhh! "Was it good for you doc? It sure wasn't good for me!"

[Megan S]

I am a prescribing nurse practitioner. Although, I do not routinely prescribe HRT medications and don't work in endocrinology I can possibly provide you some additional information. First is, Spiro and Sulfa based medications are all in all unrelated. As Jaime D pointed out, molecularly Sulfa meds and Spiro are so different from each the potential of your body interacting with it as if it were a Sulfa medication would be extremely rare. You have a greater chance of reacting from a food with a higher sulphur content than with Spiro. Secondly, the prescribing system is not so simple. The FDA in the United States requires for drug and allergy interactions to be checked by your physician as well as the filling pharmacist. Where I work drug and allergy interactions are checked when the medication is prescribed and sent to the pharmacy through the electronic medical record. If there is concern a warning pops up which has to be addressed by the prescriber, this is then again reviewed by the pharmacy. If there are concerns I will receive a call from the pharmacist and the pharmacy will not fill the prescription. Lastly, the potential side effects listed for medications is anything which showed up in the clinical studies. This means if one person out of 100,000 tested had an interaction it now must be listed as a potential side effect. If one person out of 1,000,000 developed liver failure or any other condition regardless of whether it was caused by the medication or not it also has to be listed. I don't have a problem with patients being informed, but with the amount of information on medications both good and bad from all sources it is important to take a lot of it with a grain of salt. Your physician is a professional, standards have been put in place regarding care and prescribing medications, and it is up to you whether to trust their decision making, sound medical practice, experience, and education, or rely on subjected and skewed data from unreliable sources or without having a clear understanding of how data regarding medications is gathered and reported. Sometime look up the listed side effects for Tylenol, the most common over the counter medication. Maybe you will think twice about taking it as well. Talk to the pharmacist about your concern, it is their job and profession to be knowledgeable about medications. I hope this helps.

[JLT1]

I'm a PhD chemist.  Jamie D is correct on sulfonamides (sulfa drugs) as opposed to a thioester (spiro).  (NICE chemistry!!)  And although I am VERY LEARY of medicines and trusting doctors as I to, have matabolic difficulties, Megan S makes some good points.  Talk to the pharmacist as well. 

I reviewed metabolism of thioesters - I could see no way the the body will metabolize a thioester to get a sulfonamide (what you are allergic to taking).  Most likely, it will either oxidize it and excrete it or it will use the sulfur to make essential amino acids like cysteine and methionine. 

My mother had the allergy to sulfa drugs.  She did get prescribed a sulfa drug a couple of times when the doctor wasn't paying attention.  You checked your doctor and that doctor paid attention so that solves that problem.  For my mother, I looked at the metabolism and then also talked with her Pharm D.  I would suggest that you do the same - find a pharmacist who is a Pharm D, not just a pill counter, and talk with that person.  Don't take my word for it, check.

[Dawn Heart]

Thanks to each of you for your comments and feedback! I have great news! My pharmacist did some checking and has confirmed everything posted by JLT1, Megan S, and Jamie D.

You were all so very awesome for taking the time to respond to this, and I hope that it will serve to help anyone else who may become a bit nervous over things such as I was originally addressing here. I start my HRT meds tomorrow! Yay!!   

[GendrKweer]

Yikes, there are some smart ladies on here! Nice work!

[Jamiep]

Jamie, for your diagrams & words, Meagan & JLT1 being in your careers, wonderful that you chimed in with your knowledge, excellent resources. I learned a lot from your input. My Sis used to be head of Pharmacology at a Toronto hospital for a while in the 90's, She liked the anti androgen that was on a site list my gender doctor directed me to & a choices we talked about & decide on. My Sis & all of you have helped me. Dawn, my gender Doctor gave me that site in Vancouver so I can be as informed as possible when we go through this journey together. I have actually read up a lot on the Sherbourne Health Ctr., before plus resources here & all our experienced friends here.

Jamie