How to build your healthcare team

I have been told countless times that I have a great medical team managing all of the different aspects of my autoimmune battle. “Absolutely!” I say. However, it hasn’t always been the case. For decades, various symptoms were surfacing; but each symptom was being treated without looking deeper into possible reasons for all of them.

 

My autoimmune battle first officially surfaced with a goiter in 1994, soon after the birth of my youngest son. A blood test was done, my TSH (thyroid stimulating hormone) was extremely high because my thyroid wasn’t working so my body kept trying to make it work. I was hypothyroid. Multiple blood tests were done and Synthroid® doses adjusted until my TSH level was where it should be. Nothing else was pursued on that other than an occasional blood test until I met with my latest (and by far greatest) primary care provider, Dutch Stephens. Dutch looked at my medical history and said “You’ve been on thyroid meds since 1994 and haven’t once been to an endocrinologist?” This comment came a full 20 years after first starting on thyroid meds. He immediately looked at his medical assistant and told her exactly which endocrinologist he wanted me to see so that a referral could be done.

 

That endocrinologist appointment led to an ultrasound of my thyroid and the official autoimmune diagnosis of Hashimoto’s Thyroidistis. However, Dr. Mendoza, my new endocrinologist, also took a deeper look at multiple other blood level markers and set out a plan to get them all on track as it wasn’t just my TSH levels that were off. When one test is “off” in your body, everything is interconnected and there’s a good chance something else is off as well. 20 full years were spent without looking at the whys behind my thyroid disease. 20 full years were spent with extreme exhaustion from not feeling better despite my TSH levels being correct based on my blood tests. Dr. Mendoza commented that whenever thyroid issues start with a goiter, it’s usually caused by Hashimoto’s. Not one doctor mentioned that before because that was not their specialty. Referrals to specialists are insanely important! Not being referred to a specialist when areas of your body are not working is like asking a computer salesperson to install a complete networking system for your multi-million dollar company. The salesperson may know the basics of which computer would be best for your business; but not everything they need to know about computer system integration. The human body is a billion times more complex than any corporate computer system. The best primary care providers are the ones who know their limitations and give referrals when their own expertise is not enough.

 

That first referral, 20 years overdue, was the “ah-ha” moment as far as how important having referrals were. Having referrals to specialists who are known to have a great reputation are even better. This was pivotal in my approach to managing the ever growing number of medical diagnosis that were being added to my plate. I started listening to other people’s comments about their providers even closer; and I kept my eyes open to new practices opening, etc. I told my PCP when I wanted a referral to a new specialist and why the prior specialist wasn’t working out for me. It is so important for PCPs to receive feedback on the specialists you see so that they can in turn refer their other patients to the best specialists available.

 

My advice to build your healthcare team:

 

  • Ask your Primary Care Provider (PCP) about referrals to specialists for the issues that are not getting resolved. If they first say you don’t need a referral instead of discussing which specialists their other patients have been happy with, you may want to consider shopping for a new PCP.
  • When you first meet with that specialist, are you feeling listened to or are you feeling that your issues are being made light of? Not every specialist is special. You need to have trust in their expertise; and that they truly care about all that you have been going through. If you do not get that vibe, let your PCP know so that they can refer you to someone else.
  • When you establish a relationship with one specialist or more, make sure they know who you want their findings shared with. Having results simply sent to your PCP may not be enough. If it wasn’t for the great direct communication between my neurologist and rheumatologist, who work for separate hospitals, I certainly wouldn’t be doing as well as I am today. My rheumatologist notes and communication with my neurologist let my neurologist know how severe my autoimmune history was- which led her to continuing to dig until my extremely rare autoimmune disease, LEMS, was diagnosed.
  • While seeing your specialists, your PCP should keep seeing you on a regular basis and not just rely on the lab results that are forwarded from your specialists. It is your PCP who keeps an eye on everything and how it’s coming together. They can quickly spot possible medication interactions or areas of caution based on all of the treatments you are on.  I see my PCP a minimum of once every 3 months.

 

When you get a fabulous health care team together, your life and your health will be all the better for it. Last week at my endocrinologist follow up, my rheumatologist spotted me through the check -in window as they practice in the same office. My rheumatology six month appointment is next month, so she hadn’t yet seen the results of not only Weight Watchers ® but also my LEMS treatments. She had to ask her receptionist if it was me; and came out to express her delight in how good I looked and how she didn’t even recognize me. I had been at my worst of the worst when I started with her. My endocrinologist was the same way. She wanted to know all of my updates since I last saw her over a year ago. She, too, was amazed and thrilled for me. When she showed me my latest labs I was shocked at how levels that had been chronically low for decades were now actually high! When your entire healthcare team of specialists celebrates your improvement, you know your specialists are special.

Dawn DeBois

About Dawn DeBois

Florida born and Maine grown, my life has been atypical. Suffering a very early loss of my young mother when I was 4, I started the path less traveled. From being orphaned and then raised by a foster family, to having major back surgery at the age of 13, the emotional and physical stress load was extreme. Those early childhood years, that were supposed to be carefree, were full of loss and severe physical pain. Both emotional and physical stress during childhood have been found to contribute to autoimmune disease. My first autoimmune diagnosis was at the age of 28, which has led to juggling multiple autoimmune diseases (Hashimoto’s, Fibromyalgia, Ankylosing Spondylitis, Psoriatic Arthritis and most recently LEMS- Lambert Eaton Myasthenic Syndrome). I am officially now classified as having “Multiple Autoimmune Syndrome.” You know what they say, go big or go home!