# Very frustrated with endocrinologist



## karate0kat (Sep 8, 2011)

Long story short(ish) - I had two complex masses on my thyroid last fall. Given a family history of thyroid cancer and their inability to definitively diagnose via needle biopsy, they removed half my thyroid. They were benign.

TSH levels a month after the surgery were 2.2, and it seemed like the remaining half of my thyroid was compensating. 7 months later, and I've been feeling exhausted and have had anxiety and depression. I also gained a lot of weight. Not know what was causing what, we figured checking my thyroid wouldn't be a bad step. My new TSH was at 4.3. All she wanted to do was check it again in 3 months.

My mom has been dealing with a failing thyroid for decades (and no thyroid for several years now). She's worked with multiple specialists. She was even seen at the Mayo clinic years back and they told her to keep her TSH between 1 and 2. I realize 5 is the edge of the normal range, so technically I'm "normal", but really?

I had to leave work today. I was so exhausted, weak, and lightheaded that I couldn't function (and yes, I had eaten, it wasn't a blood sugar thing). I called my endocrinologist and she said (or her nurse said she said, not like I get to talk to the real thing over the phone) that I just "need to give it time" and we can test again in 1 month instead of 3.

I don't know what to do. I couldn't function today. If that keeps happening, how the heck am I supposed to work? If I stay below 5 is she just going to do nothing even when I'm symptomatic and unable to function correctly doing normal day to day activities?


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## northernlite (Oct 28, 2010)

Although all labs are not using it, the new recommendation for TSH maximum is 3.0. You are well over that and as your symptoms support, you are hypo. I think you need a new doctor if they don't believe you need to be treated at 4.3. I am symptomatic when my TSH is 2.0 or more. I feel best when my TSH is under 1.0.


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## Octavia (Aug 1, 2011)

"Give it time," huh? Isn't 7 months enough? How much time does this doctor need?

I just don't get it with doctors...why are they so dang protective with these prescriptions? What's the harm in kicking it up a notch for a patient who is clearly symptomatic?????

(I know, I'm not helping matters any, just sharing your frustration...)

Andros posted a link a day or two ago with information for patients to share with their doctors. I think that will be helpful. Andros, if you see this, can you post that again?


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## Andros (Aug 26, 2009)

karate0kat said:


> Long story short(ish) - I had two complex masses on my thyroid last fall. Given a family history of thyroid cancer and their inability to definitively diagnose via needle biopsy, they removed half my thyroid. They were benign.
> 
> TSH levels a month after the surgery were 2.2, and it seemed like the remaining half of my thyroid was compensating. 7 months later, and I've been feeling exhausted and have had anxiety and depression. I also gained a lot of weight. Not know what was causing what, we figured checking my thyroid wouldn't be a bad step. My new TSH was at 4.3. All she wanted to do was check it again in 3 months.
> 
> ...


Not too many of us here would feel comfortable with a TSH like yours!

Welcome!










If I were making the decision, I would find another doctor so fast it would not be funny.

and I am assuming that this doctor you see now only runs TSH? If I am correct; that is totally bad.

Free T3 and Free T4 are the only accurate measurement of the actual active thyroid hormone levels in the body. This is the hormone that is actually free and exerting effect on the cells. These are the thyroid hormones that count.
http://www.drlam.com/articles/hypothyroidism.asp?page=3

See if you can get TSH, FREE T3 and FREE T4 from some doctor; any doctor and get a copy of the results as we also need the ranges. Different labs use different ranges.

Most of us feel best w/TSH @ 1.0 or less. And with the FREES above the mid-range of the range given by the lab.


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## karate0kat (Sep 8, 2011)

Thanks for the support. It's always nice to know I'm not just being a hypochondriac.

I was able to get in to see a GP today. My mom's friend, who has thyroid issues too, recommended her as someone willing to work with thyroid problems as long as they aren't too complicated and difficult to manage. It's actually been about a month since the 4.3 TSH, so she ordered another round of tests, just so we know where we're starting from. Her lab still uses a higher range (.5-4.5) but it sounds like she's willing to actually treat my symptoms even if I'm still falling in the "normal" range. Fingers crossed!

I was wondering, are there any over the counter meds or herbal supplements that might help with some of the symptoms, just until the tests results come in and I get on a med? I'm having trouble working, and I really can't afford to miss too much work (I'm a temp, we don't get paid sick days, though they've been very nice about giving me the time off). Coffee seems to help with the tiredness a little, but if I drink too much it makes my heart go wonky, which is obviously not helpful.


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## webster2 (May 19, 2011)

I am glad you got into a doctor that is willing to listen, and treat. I hope you will feel better very soon.


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## tiredgirl (Jul 26, 2011)

karate0kat said:


> Thanks for the support. It's always nice to know I'm not just being a hypochondriac.
> 
> I was able to get in to see a GP today. My mom's friend, who has thyroid issues too, recommended her as someone willing to work with thyroid problems as long as they aren't too complicated and difficult to manage. It's actually been about a month since the 4.3 TSH, so she ordered another round of tests, just so we know where we're starting from. Her lab still uses a higher range (.5-4.5) but it sounds like she's willing to actually treat my symptoms even if I'm still falling in the "normal" range. Fingers crossed!
> 
> I was wondering, are there any over the counter meds or herbal supplements that might help with some of the symptoms, just until the tests results come in and I get on a med? I'm having trouble working, and I really can't afford to miss too much work (I'm a temp, we don't get paid sick days, though they've been very nice about giving me the time off). Coffee seems to help with the tiredness a little, but if I drink too much it makes my heart go wonky, which is obviously not helpful.


So sorry you are feeling bad. After years of being told in am in the normal range i finally got some medication last week, but only after i had been self medicating myself with a family members medication that has the same thyroid issue as my self. I was determined that i would get someone to listen because i was tired of feeling bad and missing out on life. If you can't get this doctor to listen, don't give up, find another doctor that will. Don't let that stupid normal range ruin your life! Praying you will find a good doctor and be feeling great soon!


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## karate0kat (Sep 8, 2011)

Update - nurse called and left message with test results today - my TSH was a little better, at 3.8. She said the doc is going to look through my records that they're supposed to be getting and once she can see a bit more of a complete picture she'll send me a written report with all the various numbers and her notes. I'm a little nervous because her lab still uses 4.5 as the upper range of normal, and the fact that I'm even further from that now might make her hesitate to prescribe anything. On the other hand, she seemed sympathetic when I talked about how lousy I've been feeling. I'm hoping that she'll want to treat me anyway, but if she's hesitant I think we (my mom's helping me with all of this) can lean on her a little and she might give in. I'm feeling a little better than I was a few weeks ago, so at least I can function. I'm obviously not 100%, though. Had myself a nice 15 minute nap in the bathroom at work today. Oi. I think I vaguely remember what it's like to not be tired.


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