Another Episode of “As The Thyroid Burns.”

About three weeks ago, I sent a message to my doctors office asking for a referral to see an endocrinologist. I didn’t hear anything back from him and I was frustrated beyond belief. I was feeling depressed about the entire situation. I’m just tired of being blown off by people.(Not to mention tired of BEING TIRED.) Just minutes after hitting publish on that post on Friday, my son brought the mail in and lo! There was a letter from my doctor. I dried my tears and was filled with hope– Surely it was the referral I had been patiently waiting for!


NOT.
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And that was it.
Let me just say this. I love my doctor. I really do. He’s been our doctor for 17 years. He has always done right by me and my children. ESPECIALLY my children. I have had nothing but good and wonderful things to say about him and the way he has cared for my family.
Until this whole “thyroid” thing happened.
I was so angry when I read his letter. I mean, awesome! My TSH is normal! But– TSH is not the be all end all in determining if things are as they should be. I am still having problems that need to be addressed and I NEED TO SEE AN EFFING SPECIALIST.
So, I logged into my “email your doctor” account and sent the following email.

I just received your letter stating that my TSH is normal. What about my T4? Is that where it is supposed to be? And what about the lump that I feel in my throat? Is that normal?
I think it’s great my TSH is where it needs to be! but I’m still not feeling right and really, is the TSH the only factor in determining if I’m “where I need to be” or not?
I had sent a message to you that I would like to see an endocrinologist. I have been doing a lot of research and talking to family members with the same condition and it seems to be a bit more complicated than a normal TSH.
I am just frustrated beyond belief at all of this and would like to see a specialist in order to make sure EVERYTHING is as it should be.

His response?
“I’d be happy to send you to an endocrinologist.”
And an appointment has already been set to see one next month.
I am not quite sure I understand why I had to get all Soap Opera Serious in an email to get what I needed, but it doesn’t really matter to me anymore because I’m finally going to see an endocrinologist.

69 thoughts on “Another Episode of “As The Thyroid Burns.”

  1. JenniferB

    I am so glad for you that you will finally get to the next level, medically, and I hope that you will be able to get answers to your questions. I have had similar moments with medical people, where I have had to get sort of, how do I put this, grumpy? with them and then oh, yea, no problem. And I have always needed what I have had to fight to get. So I truly am glad for you that you stood up for yourself and I hope this will help you get back to the health that you want.

  2. Nothing But Bonfires

    Grrrr, I want to PUNCH your doctor. Right through the computer! If he was so happy to send you to an endocrinologist, why couldn’t he have done it in the first place, instead of fobbing you off with a stupid impersonal letter that makes people who live hundreds of miles from you want to punch him through their computers? Seriously, I am getting, like, secondhand frustration from this, so I can only IMAGINE how horrible and hard it’s been for you.
    Never mind. The appointment is set. The endocrinologist will be seen. And hopefully this will be the first step into getting everything sorted out and making sure you start feeling better. Hang in there, man.

  3. DebbieS

    One of these days I just know I’m going to tune into “Mystery Diagnosis” and see a close-up of your big dark eyes! (If you’ve never seen the show, they’re big on close-ups of everyone’s eyes.) The show will end triumphantly with you doing “the worm” and all will be well. In the meantime, hang in there, girl! When are you going to take me up on some San Diego Starbucks?? My treat!

  4. anne nahm

    Am glad you are pursuing an answer. Screw the doc. If his hair was falling out and he felt like shit, he sure wouldn’t be sitting on his thumb waiting for it to get better. Anyway, you got what you needed from him, so go Y!

  5. Torie

    See? Soap operas are your friend! So glad you are moving forward with this…did you see that Melissa at suburbanbliss is getting her thyroid checked out now, too? It’s everywhere. And seems so difficult to get a straight answer about…good luck, Y!!

  6. pamajama

    Evidently seeing an endocrinologist is somewhat in the same line as seeing Jesus. I notice no difference if I take my Synthroid or not. But supposedly my heart can stop beating if I stop it, so I take it.
    Love your blog beyond words . . . better than all the rest. Your writing is like being swept up into a tornado, like being there. And believe me, I search for great stuff and so rarely find it. Perhaps God has given you dry skin because you are such a knock out in every other way:)

  7. JenT

    The tsh is just a number, and should be treated as such. If you get a good endo they will treat how you feel, not the number on a lab test. fwiw, I don’t feel well unless my tsh is at about 1. 2.42 and I’d be in misery.

  8. Carrie

    YEH!!! You got the referral. And if you are still having all the symptoms they cannot say you are better. Keep fighting girl!

  9. MM

    What is normal?! My hair is falling out with no explanation, and I was told my thyroid levels were within the range…

  10. jonniker

    Yeah, because I’m sorry, that TSH is bullshit. That is NOT NORMAL for most people. Do you know what my normal is?
    0.35 TSH. Which is almost hyperthyroid for some people, but it’s MY normal, and my endo is finally cool with that.
    MM, the range for some labs is 0.5 to 7.0, but the new normal range from the endo association is .3 to 3.0.

  11. Caroline Bingham

    Oh hell no! I’d be so flipping pissed! And for the record, 2.72 is NOT normal. For people without thyroid problems, their TSH is between 0-1…. ONE. If you have a thyroid condition, then they’ll consider it normal as long as it’s below 5. HELL NO!
    I’ve had thyroid crap for years and ♥ my endo because he doesn’t consider anything above a 1 to be “normal”… I’m so glad you’re finally going to see a specialist!
    ♫ this is me, doing a happy dance for you ♫

  12. Peevish

    You know, it’s a crying shame that in this day and age, we must advocate so strenuously to get decent medical care. Good for you for not backing down and taking the “you’re fine” for an answer.

  13. Meegan

    That fucker. I’m so glad that you (finally) are seeing an endocrinologist but for the love pete! did it have to take so damn long? What a drag that we have to be our own advocates just to receive decent (arguably) care. So one more time, just to round things out. That fucker.

  14. To Think Is To Create

    Woo to the hoo. I’m so happy for you! I have The Hashi as well, so I’ve been right there with ya lately. Of course I read this and was all “next month?!” because I know the misery of which you speak.

  15. Vanessa

    I hope the specialist has good answers for you and can put your mind at ease. Sometimes its just knowing someone has taken a sincere interest in our case that can make us feel better. Good luck.

  16. Wacky Mommy

    My endocrinologist, circa 1990: “You keep SAYING you feel a lump in your throat, and hoarse, but I don’t think there’s a problem…”
    me, circa 1992: getting my entire thyroid removed. In surgery almost four hours because “it had grapevined around your esophagus, no wonder you felt like you couldn’t breathe, we were lucky to save your parathyroids and your vocal cords…”
    Get an ultrasound, would ya? I love you so much, Y. And I’m not saying that in an Eddie Haskell kind of way.

  17. paula

    I just joined this blogsite tonight and I have found your stories to be the most interesting. I am also a mother of 3 and I feel your love and pain. Congrats on you dr. appt . I will be checking out your blog again. and help yourself to mine!! see ya next time

  18. JaniceNW

    Keep on fighting woman. Doctors do not know everything. You are right there’s t3 and t4 and they are both important. I hope your endocrinologist is one freakin’ incredible doctor!!! Hang on there.

  19. Mama with Marriage Tips for Men

    Oh I hate it, too, when I don’t know what’s going on with my body. I’m about to have my tooth taken out because one dentist told me that it had something serious but the other said it was ok. Now, I’m confused.
    I pray that things will be just fine for you…and for me, too.
    Nice weekend!

  20. shuey6

    you have to be your own advocate, just like you are for your kids. good job! I hope the specialist can quickly find a solution for you.

  21. Jules

    Sometimes you have to beat the doctors over the head to get what you’re looking for. I’m glad you’re going to be able to see the specialist though. Hopefully they can help you.

  22. Jennifer

    I’m frustrated (for you) that you’re having to be your own doctor and advocate. What if you weren’t as knowledgable? It seems wrong to me that you are having to be so persistant.
    I’m not saying that we shouldn’t have some responsibility in our own health, but I think that your doctor should have known to give you a referral without your emails.

  23. Y

    Jennifer, you’re right. I shouldn’t have had to ask. Once he diagnosed me with Hashimotos, he should have automatically referred me to a specialist.

  24. Louise

    Y, you are so brave. Lots of the time, our doctor tells us we’re okay, and I mean, they’re doctors, right? They MUST know! So we just accept it and go on feeling miserable.
    We have to remember that they’re human, they make mistakes, they’re not always right the first time, and sometimes they’re just plain lazy. I am so glad that you kept on it (I’m a little disappointed that with this particular doctor, it seems that you have to KEEP keeping on it… that dude needs to step up. No matter how great he’s been with your kids in the past… maybe he should just stick to kids, I dunno) and that hopefully this endo is going to be able to do something to help you!

  25. Ang

    That is such a relief! I hope that this appointment gives you the answers that you need.
    I’m glad you were so persistent – the squeaky wheel does get the grease (esp. in the medical field).

  26. The Over-Thinker

    I’m relieved to hear that you’ll be seeing a specialist—I hope they have bunches of good news for you and that they are a really good listener, you know? That they really listen…take care, Y. I’m sending many good vibes your way.

  27. southernbelle

    I have been reading you for awhile. Glad to hear you will finally get to see a Endocronologist. I also have Thyroid problems. You do feel a world of difference when you get everything corrected. Good Luck

  28. Jessica

    Good on you for being persistent on this. Your health is not something to be taken lightly, and your doc should KNOW this.
    Reading what you are going through makes me so very glad that I got lucky with the doctor I found here in Chicago. She takes everything I say seriously and is working with me to help me feel better.

  29. Jerri Ann

    Hey, my family doc is great too…as long as you are not sick. No really, he is good for sinus infections, the flu, an occasional bladder infection, or for my kids…..he is great. My husband’s blood pressure…wonderful..my own blood pressure, not bad…..but the thyroid and diabetes apparently has the man’s head spinning…and off to the endocrin. I went…I mean, c’mon please, what kind of doctor is “a good one as long as you are not sick”?

  30. Pam

    Doctors are the insurance industry’s bitches and they will never step out of protocol.
    We patients have to be our own advocates and in most cases, the squeaky wheel eventually gets oiled.
    I would imagine that most Doctors hate that we can research and educate ourselves about conditions thanks to the internet (and Al Gore).
    Congratulations on getting the appointment and for being your own health care advocate.
    I hope you start feeling better soon. :)

  31. whitetrashmom

    Okay—I am getting on the bandwagon and for a good reason!
    My thyroid tests kept coming back as “normal”….for SEVEN YEARS I felt tired, lost my hair, felt horrible. Then, finally I went to a endocrinologist that specialized in women’s hormones. Turns out, that despite my “normal” tests, my thyroid had pretty much SHUT DOWN for about SEVEN YEARS. Sorry to rant but I have blogged about this and it really makes me mad that women are still made to feel silly or odd about complaining about thyroid issues. Stick to your guns girl. Really. Keep us posted. We’re behind you.

  32. smallstatic

    Seconding what Pam said to a certain degree. Your doctor sounds like he’s following some sort of managed care protocol. It may not have been the tone of your email that got him, rather the fact of the second request and the independent information you’ve been gathering. I’m so sorry to hear that you’re going through this. I’ve been reading your site for a while and I wish very much for you to feel better soon. Keep advocating for yourself. Your doctor, though it may seem unfair or even unjust, isn’t “taking care” of your or your family as much as he is providing a service to you. The best thing you can do is arm yourself with as much information about your condition and the provision of medical services within your plan as possible, which it sounds like you’re doing. Good luck.

  33. oliveoyl64

    I’m glad you advocated for yourself and didn’t let that be “the answer”. The endo will run all the tests needed, but the one I had didn’t want to listen to MY concerns, just followed protocol(like someone said already).
    I have stopped taking my meds completely,YEP SELF MEDICATING and I feel tons better. Tells me the levels were NOT working.
    I don’t think it’s possible to feel like our old selves ever again, we just want to feel GOOD.

  34. BookMamma

    Thank Bejesus! You’ve been on my mind so much the past few weeks and I’m so glad you’re finally seeing some progress here. I can’t imagine what you’re going through and how difficult it must be…. we’re all rooting for you and hope this is a step in the right direction to feeling like a human again.

  35. marjorie

    I’m glad you’re finally going to be seeing an endocrinologist. I hope you can get some answers as to why you’re still not feeling well. I was reading your previous post about periods, and I too have a story. I never had any embarrassing moments as a teenager although my period made me sick every month, with terrible cramps and vomiting. But after I had my third child, when my periods resumed, they were very heavy. One Sunday when my husband (a pastor) was on holidays, we decided to take the kids and go to another church. I remember saying, Um, maybe this might be one of those days when I should maybe just stay home. Um, dear, I don’t think I should…and he’s all Oh come on, it’ll be okay, we can all sit together (which we usually didn’t get to do, because he’s always up there at the front.) So we packed up the kids, got to the church, we stood up for the first hymn, and, yup. Whoosh. All over the back of my pink pants suit. I don’t know who was sitting behind us, I did not make eye contact with anyone, just grabbed the baby and made a bee-line for the ladies’ room. Where I proceeded to wash my pants, underwear and myself in the sink. I had to put the wet clothes back on. Needless to say, I did not go back in the church but went outside and walked around in the parking lot to get my clothes dry.

  36. Beth

    First, I’m so glad you got a referral to an endocrinologist.
    Second, this is not the first time you’ve had to hound your doctor for appropriate care/service. IMO, if you can find another doctor, it may be time to break up with this one. No one should have to work as hard as you have to get good medical care, especially under your circumstances. YOU DESERVE BETTER!
    I am keeping you in my thoughts and hoping this upcoming appointment with the endo yields some positive results and puts you on a path to wellness. *hug*

  37. Kay

    His attitude infuriates me. A doctor should listen to his patient and also, every doctor needs to read up on TSH and T4 et al.
    Sounds like he was just trying to appease you but I am hoping you go to the endo and get to throw it back in your doctor’s face.
    I Maybe you will find out more details of what is going on with you and can get back to normal!

  38. Jenine

    Y -
    I love your blog and visit it regularly but have never commented until now.
    I have thryoid disease, although mine is different than yours. I have straight, plain and boring, hypothyroidism. I’m so glad that you were persistent about seeing a specialist. Please, PLEASE keep up that persistence when it comes to your endocrinologist. A lot of doctors go by numbers on a sheet of paper but the really good docs will tinker with things until you’re feeling right as well. It took me a very long time to realize that and to find a doctor that would work WITH me, not just dictate to me.
    All the best!
    -Jenine

  39. holly

    What is the matter with your doctor?!? He may be great with your kids, but you sure have to push him a lot to take you seriously. He is referring you to a GOOD endocrinologist, right? Like someone who will actually listen to you? I hope so. Just in case, be prepared to be persistent with the endocrinologist, too. Don’t back down! We’re behind you all the way.

  40. Justine

    Hi Y…
    I am a loooong time reader. I also have a bad thyroid and have been told for years me levels were good. I never truly felt good…..Well now I am having more symptoms so my doctor finally referred me to an endo. They think I may have PCOS you also seem to have alot of these symptoms although there is no test to confirm PCOS alot of times when you have the symptoms you are also insulin resistant which can be confirmed and there are medications out there for that. My sister who also has had a bad thyroid for years was finally diagnosed insulin resistant and they put her on medication and she was finally able to lose weight after years of struggling. I would love to chat with you more about this so if you would like to chat about this just shoot me an e-mail…I soooo understand what you are going thru….Take Care Justine

  41. The Aitch

    I just wish doctors would actually listen to our fears/ complaints/worries, etc instead of just hearing what the want to hear. Glad you get to see an endo though!
    In the meantime ad I hope this doesn’t eff up your day…look at our guy:
    http://www.tmz.com/2008/03/17/the-grind/
    WTF? WHY NEIS WHYYYYEEeeee?

  42. Lisse

    I’m glad that you pushed to see an endo…. Sometimes it’s like our doctors speak a different language. Patience and persistence (and research)usually work to our advantage.
    Part of the problem is that Dr.s have too many patients to see. While he’s in the room with you, he’s got at least one other patient in another room scheduled into the exact same time slot.
    Anyway, I hope the endo has some more tricks up his/her sleeve.

  43. Tracy D

    Yay! I wish you hadn’t had to get all up in his face on the email to get him to take you seriously…. but I am glad you have that appointment!

  44. CATE

    Praise be!! I’m so glad for you. When you go, tell the endo EVERYTHING, even if you don’t think it’s thyroid related. It’s hugely important.
    Man, I’m seriously tearing up here. I’m just so glad for you that you can finally see a specialist. Now I need to take my own advice and get back in to my endo. I’m going to be bald in about another month if I dont get my meds adjusted!!

  45. Hashbrown

    Hi
    I have read you for a few years and like your blog very much. first, your posts about your thyroid are not boring or tiring to read. Second, good for you for continuing to advocate for what you need for the proper care of your body. It is very difficult to stand up to the health care system especially when you feel like crap. We, especially women, are disempowered by the system and doctors are made into the experts. Some do not abuse the power and work to help us care for our bodies and be empowered. Others crap all over us. Yours seems in the middle. I hope the specialist does right by you. Stay strong.

  46. Redneck Mommy

    The squeaky wheel gets the grease, baby. Tis a sad fact of the health care system, even over here in Canada.
    That said, I’m going to put my lap top down and go do a happy dance for you.
    Nekkid. In front of a window. Because THAT’s how much I love you.

  47. Gina

    Hi Y,
    I have Hashimoto’s as well. I got diagnosed about three years ago, and I am glad they are finally referring you to the endo. But to be honest, which I have to be even though it sucks to be honest, there are good endos and bad endos, just as there are good doctors and bad doctors.
    The first endo I went to looked at my (admittedly) flabby belly and said, “Well, we need to get your levels right so you can get rid of THAT” with a point of the finger and a disgusted air. He kept trying to play “catch-up” with the Levothroid (insisted that Synthroid was no better) and I suffered with virtually no results for almost 16 months.
    Partly because I was stupid and should have changed sooner, but partly because I didn’t know any better.
    My current endo is much much better, and she has made a big difference in my levels, even though with Hashimoto’s my experience has been that my levels hardly ever stay steady. I don’t know if it is because of loss of function or what, but it has been a rough road for sure.
    We have a commom friend in Amy from Piece of Work, and I live in SoCal as well.
    It seems like you already have lots of support, but if you need any more or have any questions, feel free to drop me an email.
    Because nothing makes me happier than bitching about my condition to a willing ear.
    Kidding!
    Sorta…

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