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My TSH is 2.69 now after 2 months about on synthroid at only 25 mcg. I am still tired all the time and have some other symptoms like depression still (which could be from my MI) 

I messaged the nurse and my dr was out of the office. A CNM dude said my thyroid was normal and he refilled it at 25 mcg for a year and I am to get it tested again in a year!

Is it unreasonable to think this is not quite right? I really think I could benefit from a slight dose increase. Maybe not though. I feel brushed off. 

Edited by Wonderful.Cheese

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Well I sent an email asking if things will improve at this dose or what to expect. I said I don't notice too much of a difference so far. I hope that doesn't sound bitchy or know-it-all like. That's not how I want to sound. 

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My TSH is on average at 1.0.  Personally, if my TSH is over 1.5 I start to get nervous.  But that is just me ... I know how I felt when my level was higher and and I don't want to go there again.  I get my TSH done about every 2 months when I get my port flushed.  There are standing order labs that I get done, and TSH is one of them. 

IMO, I think that waiting a year to get your next TSH is a long ways a way.  Every 6 months I could see, but things can change fast.

21 minutes ago, Wonderful.Cheese said:

Is it unreasonable to think this is not quite right? I really think I could benefit from a slight dose increase. Maybe not though. I feel brushed off. 

I think it is reasonable to ask more questions about it. 

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2 minutes ago, melissaw72 said:

My TSH is on average at 1.0.  Personally, if my TSH is over 1.5 I start to get nervous.  But that is just me ... I know how I felt when my level was higher and and I don't want to go there again.  I get my TSH done about every 2 months when I get my port flushed.  There are standing order labs that I get done, and TSH is one of them. 

IMO, I think that waiting a year to get your next TSH is a long ways a way.  Every 6 months I could see, but things can change fast.

I think it is reasonable to ask more questions about it. 

Thanks Melissa. That helps a lot. I feel like it's still too high. Good to know you can feel like it's not right at different levels.

Do you see an endocrinologist by chance? Should I see one of those dr's? They deal with hypothyroidism right? I don't want to seem like I'm dr shopping though. :/ 

I agree that a year seems like a long time away. My dr said every 6 months about  once a dose of synthroid was SETTLED at (I think I'm remembering this right). So I don't like this stand in guy CNM to say that when my dr (whom I like and trust and who is an excellent dr) says otherwise. Not sure what to do. Will update if the nurse responds. 

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Omg !!! 

I hope I'm not overreacting. But I think I got the old "your physical symptoms are due to your MI" brush off. 

The nurse said she spoke again to the stand in guy who said my symptoms may or may not be due to thyroid and to speak to my psychologist! Wtf does my tdoc suddenly treat hypothyroidism??????? 

I wish the dr's would fucking make up their minds. First my MI had to have a physical cause like thyroid. Then my physical stuff has to have a MI cause. So wrong!

What am I supposed to do now? I said thank you and I would contact my PSYCHIATRIST. (Although not in all caps like that). 

Dr's just want to pass you off so they don't have to lift a finger. They keep passing you around to avoid responsibility.

MI? Nope can't be. Go see a gdoc. 

Physical issues? Nope can't be. Talk to your tdoc. 

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I HATE being "that patient" but I feel like everyone is pointing fingers at each other and I'm being brushed off on all sides. 

Here is what I sent and wrote after calling my nurse -

 

I asked if I should see a specialist for thyroid. I said my pdoc blames all my current issues on thyroid. And stand in guy blames all my current issues on MI. I said I did leave a message for my pdoc (which is true). 

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Not sure what CNM means, but if you want definitive answers as to what's up with your thyroid then the doctor to go to is an endocrinologist. I highly recommend them. Being treated by a GP for endocrine problems is like being treated by a GP for mental health problems.

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13 minutes ago, jt07 said:

Not sure what CNM means, but if you want definitive answers as to what's up with your thyroid then the doctor to go to is an endocrinologist. I highly recommend them. Being treated by a GP for endocrine problems is like being treated by a GP for mental health problems.

I think it's certified nurse midwife? Which is an APRN. My gp is a obgyn dr. That's all it says when I google CNM. Confusing!

Your analogy makes sense. I am too angry to deal with this anymore with them today but I will seek an endocrinologist.

I hate that they probably flagged me as a "difficult patient". Ugh. 

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Thanks, Cheese, for the explanation. All these various initials sometimes gets confusing.

Yeah, I'd try to see an endocrinologist if I were you.

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did they only do the TSH? i would definitely go see a specialist if i were you. not because your results are severely abnormal, but it does sound like they're not treating your concerns with the respect that you deserve. a specialist won't rely on the TSH alone, and look at the overall picture. i read an article awhile ago about the debate about narrowing the "optimal/normal range" for TSH readings, and it said that many specialists think its too broad to be definitive. i read it in a magazine so i can't link here. either way, like i said, if you're concerned about a result they definitely have no right to brush you off.

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1 hour ago, Wonderful.Cheese said:

Omg !!! 

I hope I'm not overreacting. But I think I got the old "your physical symptoms are due to your MI" brush off. 

The nurse said she spoke again to the stand in guy who said my symptoms may or may not be due to thyroid and to speak to my psychologist! Wtf does my tdoc suddenly treat hypothyroidism??????? 

I wish the dr's would fucking make up their minds. First my MI had to have a physical cause like thyroid. Then my physical stuff has to have a MI cause. So wrong!

What am I supposed to do now? I said thank you and I would contact my PSYCHIATRIST. (Although not in all caps like that). 

Dr's just want to pass you off so they don't have to lift a finger. They keep passing you around to avoid responsibility.

MI? Nope can't be. Go see a gdoc. 

Physical issues? Nope can't be. Talk to your tdoc. 

Wow.  Just wow.  Oh man.  I am angry with you on this ... the symptoms being MI-related *eye roll*

IME, That is one way to say the (DR or whomever) doesn't want to deal with you, and just needs an excuse, which he has, which is the MI.  I am so pissed right now that they treated you like that!!!  I've had that happen when my hip broke.  My gdoc at the time told the nurse to tell me to go see my psychiatrist.  After the SHTF, my mom asked my pdoc to order an xray, and it was found that my hip was broken.  So I know what you are talking about!

I think the symptoms he is referring to is anxiety or something?  Which would be the reason to go to tdoc.  Idk if this is something he is thinking?  Either way his frame of mind is so wrong.

I can relate to the passing around to avoid responsibility.  And it is so mean (understatement; I can't think of another word I'm trying to think of). 

(in bold) ... BTDT way too many times.  I hope it never happens to you again.

1 hour ago, Wonderful.Cheese said:

Thanks Melissa. That helps a lot. I feel like it's still too high. Good to know you can feel like it's not right at different levels.

Do you see an endocrinologist by chance? Should I see one of those dr's? They deal with hypothyroidism right? I don't want to seem like I'm dr shopping though. :/ 

I agree that a year seems like a long time away. My dr said every 6 months about  once a dose of synthroid was SETTLED at (I think I'm remembering this right). So I don't like this stand in guy CNM to say that when my dr (whom I like and trust and who is an excellent dr) says otherwise. Not sure what to do. Will update if the nurse responds. 

YES!  I see an endocrinologist for my thyroid.  Great thinking!  For some reason I thought you were already seeing one.  Try not to worry about them thinking of you DR shopping.  It sucks to be thought of that way, but I would focus on your health first. 

Edited by melissaw72

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5 hours ago, Wonderful.Cheese said:

I think it's certified nurse midwife? Which is an APRN. My gp is a obgyn dr. That's all it says when I google CNM. Confusing!

Your analogy makes sense. I am too angry to deal with this anymore with them today but I will seek an endocrinologist.

I hate that they probably flagged me as a "difficult patient". Ugh. 

THEY are the ones I flag. Why in the world didn't the doctor tell you to go to an endo in the first place???

As soon as hubs developed thyroid related issues our mdoc immediately referred him to a really really good endocrinologist. THryoid issues are amazingly complicated with only a few simple hormones to measure.

JT"s analogy is perfect - this is like your primary care physician giving you DBT therapy.

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6 minutes ago, water said:

THEY are the ones I flag. Why in the world didn't the doctor tell you to go to an endo in the first place???

JT"s analogy is perfect - this is like your primary care physician giving you DBT therapy.

This is so true (in bold).  IMO, A good gp (whether they are a OBGYN or an internal medicine DR or whomever), would recommend that you see a specialist (endocrinologist) instead of trying to help you themselves. 

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21 hours ago, cosima said:

did they only do the TSH? i would definitely go see a specialist if i were you. not because your results are severely abnormal, but it does sound like they're not treating your concerns with the respect that you deserve. a specialist won't rely on the TSH alone, and look at the overall picture. i read an article awhile ago about the debate about narrowing the "optimal/normal range" for TSH readings, and it said that many specialists think its too broad to be definitive. i read it in a magazine so i can't link here. either way, like i said, if you're concerned about a result they definitely have no right to brush you off.

Yes only the TSH. Thanks for the information and support. I agree and will see a specialist maybe I can get the nerve to call today or else Monday. I hate the phone!!! Yikes !!

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21 hours ago, melissaw72 said:

Wow.  Just wow.  Oh man.  I am angry with you on this ... the symptoms being MI-related *eye roll*

IME, That is one way to say the (DR or whomever) doesn't want to deal with you, and just needs an excuse, which he has, which is the MI.  I am so pissed right now that they treated you like that!!!  I've had that happen when my hip broke.  My gdoc at the time told the nurse to tell me to go see my psychiatrist.  After the SHTF, my mom asked my pdoc to order an xray, and it was found that my hip was broken.  So I know what you are talking about!

I think the symptoms he is referring to is anxiety or something?  Which would be the reason to go to tdoc.  Idk if this is something he is thinking?  Either way his frame of mind is so wrong.

I can relate to the passing around to avoid responsibility.  And it is so mean (understatement; I can't think of another word I'm trying to think of). 

(in bold) ... BTDT way too many times.  I hope it never happens to you again.

YES!  I see an endocrinologist for my thyroid.  Great thinking!  For some reason I thought you were already seeing one.  Try not to worry about them thinking of you DR shopping.  It sucks to be thought of that way, but I would focus on your health first. 

Thank you so much Melissa for being so supportive!!! I can't believe what happened to you with your hip being broken! Omg! I'm so sorry you went through that. They treated you horribly!!! Just awful!!!

I agree I need to put my health first and not worry what they think. Thank you for the advice I am going to see an endocrinologist. I just need to get the nerve up to call for an appointment. Thanks again!!

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16 hours ago, water said:

THEY are the ones I flag. Why in the world didn't the doctor tell you to go to an endo in the first place???

As soon as hubs developed thyroid related issues our mdoc immediately referred him to a really really good endocrinologist. THryoid issues are amazingly complicated with only a few simple hormones to measure.

JT"s analogy is perfect - this is like your primary care physician giving you DBT therapy.

Thank you so much water !!!

I don't know why they refuse to refer or help me further. They just said I "shouldn't be having symptoms since TSH is normal now" and just left it at that - then telling me to talk to my psychologist.

Then they said to see a regular like family practice gdoc (my primary dr is an obgyn) to see what a regular gdoc would say and to see if that gdoc thinks I need to see a specialist. I think I'll just skip that step "thanks." Ugh. 

I'm going to make an appointment with an endocrinologist as soon as I get the nerve up. Either today or Monday.

I don't think I need a referral but I will ask when I call for an appointment. I just don't see the need to see a family practice gdoc just to get a referral to see an endocrinologist. Why can't obgyn dr refer me? Frustrating!!

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Needing a referral depends on your health plan. Our doctor gave us a NAME of someone, a really really good someone. But on our health plan we do not need referrals. It is very possible do you not either. 

If you know someone local with thyroid issues ask them for a suggestion. Endos are hard to find and hard to get appointments with. 

Don't be surprised if it is months from now. The thyroid counts are also slow to change. If the endo is checking hubs counts out we often have to wait a few months for any result. Nothing goes fast in thyrolandia. 

Have a friend make the calls for you if it is too hard. THat is totally fine. I call for hubs all the time because he is a teacher and is never ever free during the day.

Finding your endo will help so much cheese. Good luck!!

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5 hours ago, Wonderful.Cheese said:

I don't think I need a referral but I will ask when I call for an appointment. I just don't see the need to see a family practice gdoc just to get a referral to see an endocrinologist. Why can't obgyn dr refer me? Frustrating!!

Sometimes health insurances require you have a primary/family DR.  They are the ones to give their referrals to other DR. (OBGYN Drs are specialists, not primary care.  They might know about primary care stuff, but they aren't considered a primary provider (please correct me if I am wrong).

An exception that I know of (in terms of referrals) is that I do not need any referrals to see any specialist I want to.  I can just go to one (make an appt) and not worry about referrals.  My healthcare is Medicare/Medicaid.  But I still have to have a primary.

 

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Strangely, my psychiatrist is the one who handles my thyroid stuff, but that's largely because he sees it as interrelated to my fatigue issues.  He's also of the mindset similar to what cosima said that the actually acceptable range is different from what's technically acceptable.  He's also not one to just test one of the thyroid things--he'll do the whole panel, like TSH, T4, T3, etc.  The reason I actually ended up with a diagnosis way back in 1995 or so (from a pediatrician) was when one of the four was off, but not the main one that people check.  So it does matter. 

That said, an endocrinologist is definitely better than relying on your current mental health team to handle it!  I have had a non primary care doctor provide a referral before (an OBGYN to a specialist for GYN sexual issues; my psychiatrist for the sleep study by a neurologist).  But I also currently have insurance that doesn't technically require one.  When I ended up in the ER b/c of hte GI stuff and couldn't see my PCP for another three weeks and had been dealing with migraines for four months at that point, I just made appointments with a GI and a neurologist.  But some do require the actual referral.  I've found that the people who either answer the phone or handle the billing issues for the specialist will know. 

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At this point, I'm probably just piling on to what others have already said, but I'd strongly encourage you to see an endocrinologist. In my experience, GP's don't do well in treating hypothyroidism (tending to be too conservative), and psychiatrists just don't bother to consider the problem in the first place. Other's experience may, of course, vary.

Finding one could be difficult. I'd normally suggest asking your GP for a recommendation, but their treatment of you as a person doesn't inspire confidence. Perhaps start there, ask for multiple recommendations, then contact the specialists directly. (Understand not liking the phone -- perhaps you can start with websites and get a sense for the person that way.) You may or may not need a referral. My insurance, for example, doesn't require one, however my current endocrinologist insisted on one from my GP before he'd see me. (He's the second one I've seen -- the first was quite skilled medically, but ran his practice poorly...you might have to keep looking until you find the right one for you.)

While lab results will be crucial in assessing your condition, expect to be examined physically. They should be palpating your thyroid (or perhaps performing an ultrasound) to examine it in search of goiters or tumors (after all, if your thyroid isn't working properly, there's a reason -- finding that reason can be critical).

It's also been my experience that a specialist will rely a great deal on the lab results, but they'll also consider your symptoms as a guide in treatment. That is to say, they'll adjust the meds until you not only have good lab results, but also feel well.

Don't consider it as doctor shopping. It's entirely reasonable and normal to seek out a specialist, especially for a challenging condition like this one. Again, in my experience, it's well worth the effort. Seeing a specialist has made a significant difference in the effectiveness of my treatment.

Good luck.

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