Trouble getting official diagnosis

VelveteenArabian

Hi all
I have reason to believe I am hypothyroid. My thyroid level tests arguably normal and arguably hypo depending on what range you're going by. I have a TON of symptoms. I'm unable to get an appointment with an endocrinologist. I keep trying and they tell me they won't see me without an official diagnosis. My PCP is not an endocrinologist and has told me I need to see one as she "doesn't know" what's wrong with me. I've been unhappy with her service and want to "fire" her anyway.

Suggestions?

75Juniper

I would ask my PCP's office to contact the endo directly and let them know they are referring you for consult. If they still refuse to see you, I'd ask the PCP to refer you to a different endo. If you still have trouble, I'd find a new PCP, especially if you aren't satisfied with your care in general.

Good luck!

kcvance

I had to employ a harsh tactic (because I was DESPERATE to just get a test and find out what was wrong with me). I had been to the doctor probably 5 times because I was in danger of losing my job as an engineer due to oversleeping/fatigue/brain fog, and had been told I had chronic fatigue syndrome (despite never having mono), or Fibromyalgia (except I wasn't in pain). My insurance at the time would only let me switch PCPs once per year. I have no idea what the laws of your state are, or how your PCP will react to this, but here is what I ended up doing as a last-ditch effort to just get TESTED.

- I made a new appointment with my PCP
- I verbally listed my symptoms, and my family history (all the women on my mom's side have hashimotos)
- I requested a blood test (for TSH, both thyroid antibodies, Free T4, Free T3, and Reverse T3)
- When the doctor refused to do the blood test as requested, I pulled out a letter listing the same symptoms and family history, and told him that he would be placing this letter in my medical file.
- I then informed him that I would be changing doctors, and if my new doctor discovered that I had thyroid disease by running the same tests that I had requested today, that I would be hiring a lawyer and filing a lawsuit (in addition to filing a formal malpractice compliant with the AZ Medical Board) against current doctor.
- Doctor got pissed off (because I gave a **** at that point, LOL)
- However, he agreed to run the damn blood tests EXACTLY as requested (that is the important part!!!!)
- My TSH was 60, and one type of antibody was so high that the lab stopped counting (I got an "out of range" value, and it was marked 29,000+).

At my next appointment, he apologized in person and I asked that he stop treating patients like idiots, but then he only subscribed synthroid, which began my search for a decent doctor....

There is also a huge variation on what is considered "normal" lab values for TSH, which is totally useless anyway - so I would recommend getting all the above hormones tested, but ESPECIALLY ANTIBODIES (both types). Labcorp (here in AZ at least) will run patient-requested blood tests (no clue if your insurance will pay for these or not, I currently have a great doctor and have not had to resort to this).

I would recommend the search for a new PCP, if at all possible.

http://www.stopthethyroidmadness.com/ has some good resources on the disease, tests, and doctors. On the first page there is the "Undiagnosed" tab which gives some information on how to read blood tests, and which tests to ask for. http://www.stopthethyroidmadness.com/lab-values

Send me a friend request if I can help in any other way. Good luck to you.

Syriene

There's a pretty good list of docs here too.

http://www.thyroidchange.org/list-of-doctors.html

Hope you find one nearby, but if you end up having to travel a bit for a good doc, it could be worth it (to feel better).

janalayn

It definitely sounds like you need a better doctor. I continue to struggle with my thyroid issues but my doctor is continuing to work with me to try to figure out what is happening. I am on Synthroid and have a TSH of .2, which is nearly hyperthyroid, but still unable to lose weight and have all my symptoms of hypothyroid. Hopefully tomorrow I will have a new plan of attack so that I can actually start to lose weight instead of continuing to gain.

Be proactive and don't take "no" for an answer. Do your own research, but only use reputable sources like the NIH. You may have a problem similar to mine where you have the hormone in your system but it isn't being utilized properly. If you can't change PCP physicians, ask for a referral to the endocrinologist - they can refer you for diagnostics.

VelveteenArabian

Thank you all. I have an appt for Wednesday and plan on going well armed with information!