Sunday, January 31, 2010

I need to cry for a bit...feel free to ignore my rant...

I need a thyroid doctor who listens to me. I don't feel well, and it has gone on long enough. I've read about so many people who have found doctors who are willing to work with the patient to get the right combination of medications, lifestyle and supplement adjustments to get them well faster. I'm dealing with the same old thing that hasn't worked for decades. Prescribed a synthetic T4 for the fourth time now, and I'm just over this. Not one of the many doctors I have paid want to try anything different.

I've had several episodes of atrial fibrillation. My heart is fine. Numerous expensive and uncomfortable tests confirm that. One doc says it's thyroid disease fueled. Another says it's anxiety...and a third says it's allergy related. Because of this problem, no one will consider me for T3 replacement. Be patient...give it time, they say. It's been way over a year and I say I've been the lab rat for all of the so-called "tried and true" therapies and clearly they are NOT working. This is not fair.

I've had sensitivities to Levothyroxine three times now. I'm on a low dose of the brand name Synthroid to see if that will make a difference. I'm still sick. I want to exercise, but it makes me sick to do so. This makes me sad. I want be active! I have the will, but I cannot get physically ill because of my intolerance to exercise. (Another symptom of hypothyroidism.)

I eat only whole foods now. I drink only water and the occasional chamomile tea. I don't drink, quit smoking...I take whole food multi-vitamins. I've been doing this for awhile...and as I said earlier, I'm still sick.

I'm tired of reading websites about patients who have found an open minded doctor to help them heal. Frankly, in this large area that I live in, there isn't one within a hundred miles of me who will take my insurance. Those docs are way out of my price range. I'm jealous. If Mary Shomon is such the patient activist, come to MY area! Unless they're wealthy, our thyroid patients are suffering. And specialists are a dying breed.

I've read every book cover to cover and have tossed them out of frustration. I can stand up, be proactive, put my foot down, cry my eyes out to ALL of my docs and nothing. I feel like I'm branded as a complainer. I was good in the beginning, trust me. I came in with my symptoms and looked for help. I was given help...I've been given the same OLD help. After a year of my suffering and a year of the old-school thyroid treatment, you'd think someone would want to explore another avenue?

I want all of my money back.

I'm done crying now. Maybe venting here will help me find some newfound courage to continue to kick thyroid disease ass. I don't know.

Until next time,



Mary Shomon said...

Hi Karen...

I'm so sorry you're struggling and feeling bad. You deserve better.

To be honest, there are probably about 20 doctors in the entire US who I think really "get" thyroid disease in terms of being able to properly diagnose and treat hypothyroidism in women. Endos are fine for nodules and cancer and goiters, but for underactive thyroid that doesn't respond to annual TSH tests and Synthroid, forget it...I can count on my fingers and toes the doctors I'd trust. And I don't think any of them are on insurance plans, or in HMOs, and most of them are expensive, and most of the people who aren't lucky enough to live in the town where these doctors are still drive hours to see them, wait hours in the waiting rooms, and pay out of pocket 2 times a year to see them, because they're worth it. I do .... otherwise, I'm stuck with crummy doctors on my insurance program and my thyroid will be poorly treated. My insurance doesn't cover my doctor, and she's an hour away, and I usually wait a long time in the office -- a visit is an all-day affair.

You wrote "If Mary Shomon is such the patient activist, come to MY area!" I would, but what exactly can I do coming to your area that I am not already doing here in the DC area? I'm not a doctor, so I can't diagnose and treat people. I write books, publish newsletters, and run websites to help educate people, and have the Thyroid Top Doctors Directory ( )to help connect patients to decent doctors. But if there's something you think I can be doing in your area, please let me know.

If you want a great doctor, my best advice is to drive up to Mclean Virginia, and see Kate Lemmerman or Adrienne Clamp (Kate's my doctor, Adrienne is her partner, both are fantastic.) Let me know if there's anything else I can do to help.

Karen West said...


Maybe you can mention in your new books that patients who come to their doctors EMPOWERED with information that could help them tremendously should count on getting their feelings hurt. It WILL happen.

Uinseann said...

I know how you feel. I have been hypothyroid for over ten years now, and my doctors have never got it right yet. One hardly looks up from his pad at all. One doctor asked me what dosage I feel best on? (we are talking Synthroid here)I replied "150 mcg" he said "right i'll give you 125mcg!" I mean 'what?' are we haggling here?

I came away shaking my head. this was two years ago, my hair is falling out, my eyes are sinking, I'm pale, cold all the time, etc etc. I had a blood test recently, and was told my Cholesterol is dangerously high and was given Statins. So now I feel even worse. Apparently being under medicated for thyroid problems causes Cholesterol, so thanks a bunch doctors!

I hope you get better I feel for you.

Anonymous said...

I know everybody really likes Dr. Clamp but I feel like she's really messed me up since I've gone to see her :(

Anonymous said...

i really like adrienne clamp, BUT she believes patients with hashimoto's disease should only be treated with synthetics. i wasn't pleased with this approach having already been on synthroid (and sick) for 20+ years. i decided to give it a try (coupled w/T3) but as i expected, depression set in, my skin was a mess, my feet hurt ...everything was awful. she prescribed an antidepressant for my low mood BUT IF MY THYROID CONDITION WAS PROPERLY TREATED I WOULDN'T NEED IT. nor would i need the blood pressure meds or the diabetes meds!
she's really missing the boat on treatment for hashi's patients. synthetics are not the way.

Anonymous said...

Hi Karen, Hope you have found some relief since your first post. I have been hypo since 2004 and live in Hampton's been a nightmare. My advice to you is to forego all the endos in the area (terrible!) and go to Washington DC. Dr. Hurlock will give you enough thyroid hormone (see Mary Shamon's site). You will have to pay but it you don't, you will never feel somewhat better...I say somewhat because once you have a problem with your thyroid, you never really feel totally well again. I would also recommend you go gluten free and read Dr. Kharrazian's book. His supplements are excellent but expensive. In my experience, I don't even bother anymore with blood tests and lab results...they never meant anything and I never felt better when I based my thyroid hormone on my results. Another thought, try Levoxyl instead of Synthroid. Hope this helps...

Anonymous said...