Doctor frustration

[WindingRoad]

Hi Indy, glad to hear you are feeling ok. Keep us posted and take good care.

[indysteel]

Mother of God, this just gets more and more confusing. I stopped all anti-thyroid meds in April. Last week, I had my first bloodwork done since then. I expected my TSH to be lower and hopefully well within the range of normal. And I define normal as being between 0.3 to 3.0.

Nope. It's at 4.47, which suggests that it's even more suppressed, i.e., hypoactive, from when I was on actually on the meds that were supposed to be suppressing it. Uh, what? It's going in the wrong direction. Plus, the message my doc's office left telling me to just recheck it in another 7-8 weeks, which leads me to believe that she saw nothing weird about this. So, I guess I'm back to feeling like I need a new doc and some logical explanation as to why someone who was initially diagnosed with Grave's Disease, albeit a mild form of it, now has a thyroid that's underactive even after going off meds.

I'm so frustrated.

[Catrin]

Yes, it is frustrating! Would it be difficult to get a second opinion? I don't know what medication they had you on, but I understand that some thyroid medication can suppress the thyroid for longer than expected. I am no expert, and there may be nothing to that but perhaps your body needs more time to work this out?

[indysteel]

Yes, it is frustrating! Would it be difficult to get a second opinion? I don't know what medication they had you on, but I understand that some thyroid medication can suppress the thyroid for longer than expected. I am no expert, and there may be nothing to that but perhaps your body needs more time to work this out?

There are really only two antithyroid meds used in the States, and I was on the more common of the two. It should have left my system entirely weeks ago. And I was on a tiny dose to begin with. The only thing that gives me comfort is that my Total T4 and Free T4 are within normal ranges. But if my TSH continues to trend up, then I'll need to address it. I just wish I understood what my autoimmune system was up to.

[Catrin]

There are really only two antithyroid meds used in the States, and I was on the more common of the two. It should have left my system entirely weeks ago. And I was on a tiny dose to begin with. The only thing that gives me comfort is that my Total T4 and Free T4 are within normal ranges. But if my TSH continues to trend up, then I'll need to address it. I just wish I understood what my autoimmune system was up to.

I hear you...autoimmune system stuff can be so frustrating. It took me a long time to understand that my Graves Disease was a symptom of a deeper problem, not the actual problem. I don't remember what I was taking, I tend to remember the massive amount of beta blockers they had me on rather than the actual thyroid medication...but all of this was in the 80s's. My situation was quite different however, thankfully for you. It is good to hear your other numbers are normal and may your next test be in the normal range.

[OakLeaf]

Oh boy. That stinks. Subjectively, do you feel hypothyroid, consistent with the test results? Or is it possible something's just off with the lab?

[Crankin]

Oy, I have had the same experience with my new, supposedly "wellness friendly" internist, with my lipid profile. I called last week to get the order for a new test; she said wait 6-8 wks. I called the office, left a message and she calls back. Hmm, I get suspicious when the doctor calls me back, instead of the office staff; I know from my friend she's having trouble building up her practice.
She says, "And why do you want a lipid profile done?" I respond, "Ah, remember, my numbers, especially my LDL were way up. This is a change. You told me to retest in 6-8 wks." She says, "I have 6 months written here." I respond, "No, you said 6-8 wks." She replies, "Well, I guess I wrote the wrong thing."
She faxed the order to the lab, but I am waiting until Tuesday to go, as I have other blood work that needs to be done for my osteoporosis meds.
I am really frustrated. I feel like *I* am telling the doctor what to do. First, I have a doctor that treats me like an old lady and now I have one that doesn't know what to do with someone who isn't a dumb sh*t and can advocate for herself. She has rave reviews, but from people who need "lifestyle counseling."
I don't want to deal with a doctor who is not affiliated with my local hospital, or I have to travel far for, for my pcp. Something is just not right here, but I guess I will stick it out for a year and then re-assess.

[indysteel]

Oh boy. That stinks. Subjectively, do you feel hypothyroid, consistent with the test results? Or is it possible something's just off with the lab?

Generally speaking, I'd say that I don't feel hypo. The power of suggestion when it comes to my thyroid has been strong, and sometimes I've found it challenging to separate my lab numbers from how I'm actually feeling. Even if I am technically hypo right now, it's arguably subclinical (because my Free T4 is still within a normal range). Right now, it makes sense to just keep a check on how I'm feeling and see what my next round of labs reveal.

I do still sense some stuff going on with my eyes and Thyroid Eye Disease (TED) remains a major concern of mine. I'd like to get another antibody test, but it's an uphill battle getting this doc to test for anything other than FT4 and TSH.

The bottom line is that there's a degree of trust lacking between us, and it's arguably time to just find somebody new--as much of a PITA as that might be. I have an annual visit with my internist next week. I might wait to see if she has any suggestions. Of course, she didn't think anything was wrong with me last summer and ordered two rather expensive tests rather than run a basic, but complete, blood profile. So I don't know how that's going to go.