Thyroid Disorders Community
Lots of questions...
About This Community:

This patient support community is for discussions relating to thyroid issues, goiter, Graves disease, Hashimoto's Thyroiditis, Human Growth Hormone (HGH), hyperthyroid, hypothyroid, metabolism, parathyroid, pituitary gland, thyroiditis, and thyroid Stimulating Hormone (TSH).

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Lots of questions...

I had joined the community for those with pituitary tumors also...got great answers & help there. Now I'm going to pick everyone's brain here! LOL I just went to my Dr's office yesterday (4/2) and thought it was interesting that the endo upped my levothyroxine from 100 mcg to 112 mcg in order to try & help me feel "better". When I went into their office yesterday and was seen by their P.A. she said tht looking at my labs one of them was off and it was showing that my medication was adjusted "too high". Anyone ever heard of this? I can't remember which one of the T's it was but she said one of them was "TOO LOW' so that showed that I am currently taking too much levothyroxine. Any thoughts or comments would be greatly appreciated. I have been dealing with this issues somewhat for years now but it's now ramped up since I had the pituitary resection done this last December of 09. I feel so tired, slowed down, want to sleep all the time, just don't feel very well at atl. I have the dry, thinning hair, losing it on the top of my head, EXTREMELY dry skin, dry eyes also. Any one have any thoughts? Like I said, i'm already seeing an Endo here where I live due to the pit tumor issue. Seeing a Neuro here and in St Lous and an ENT left over from St Louis due to the surgery. I'm Dr. weary right now...is there any help for me? it's kinda getting depressing....argh!!
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Avatar_f_tn
It is all very complicated.  Because my PCP was such an idiot, I was basically forced to learn everything I could about thyroid, which brought me to this site a year and a half ago.  That's when I got my current endo.  I absolutely love him...and I'm not easily impressed.  When I first made my appointment with him, I was prepared to call him an idot and stomp out of his office, but he totally changed my mind!!!  He listens, takes notes, treats by symptoms, orders the right tests...I just really lucked out.  He knows I spend a lot of time on the forum and always is willing to answer "forum" questions...he was a bit confused before he knew about the forum over why I was asking about thyroid issues that had nothing to do with my situation!

PRTH is relatively rare.  There's an enzyme that converts T4 to T3.  My pituitary doesn't have the enzyme, so it can convert, so it's starved for T3.  It "thinks" the rest of my body is starved, too, but it's not.  So, my pituitary just keeps cranking out TSH, which makes me look hypo, but I'm not.  My PCP had just kept saying "need more thyroid".  I got to the point where I was afraid she was going to kill me.

If you just want to chat, click on my name at the top of this post.  That will bring you to my profile page, and you can send me a private message.  (You'll see it at the top right of the page.)

Best of luck and keep us posted on developments.
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Avatar_f_tn
The P.A. must have been commenting that your TSH was too low.  TSH is a pituitary hormone and a very poor indicator of actual thyroid hormone levels, FT3 and FT4, TSH is counterintuitive...when it's low, you're hyper (or overmedicated) and when it's high, you're hypo (or undermedicated).  Apparently, your doctor knew better  than to go by TSH since he raised your meds in an effort to alleviate your hypo symptoms and help you feel better.  It's good that your endo is prescribing based on FT3 and FT4 levels and your symptoms.

Since you had a pituitary tumor, I would think that it would be best to pretty much ignore TSH (at least for a while) in your case.  

It sounds like your endo is doing the right thing.  Do you have an appointment to do follow-up labwork in 4-6 weeks?

It's best to get in the habit of requesting a printed copy of all your tests for your records.  That way you can keep your own history and have it available to any doctor who needs it.

If you have FT3, FT4 and TSH results with reference ranges, please post.
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1139109_tn?1326332522
Thanks for commenting back on what I'd posted. I am so new to having so many issues to deal with that I don't know what to believe and what not to believe. I do not have copies of my labs but can get a copy of them and that's a GREAT idea to get copies of all of those because I will want copies for me as well as my Neuro Dr In St Louis I'm sure will want to see copies of any bloodwork that I have had completed. What kind of issues do you yourself have? Mine are so multifaceted that it's hard to remember it all sometimes. I just want someone to get down to the bottom of the nitty gritty of what's going on and try to help me fix it so that I will begin to feel better. This past winter has just been awful as far as illness is concerned...my immune system has degraded. Been extremely tired, can't wake up in the a.m., craving salt, face flushing at weird times....I just need a new body!! When I get the lab's I'll post those. Thanks so much for your help...BTW, I can use all the friends I can get...you ever want to add me as a friend i'd be glad to!! xoxoxoxo
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Avatar_f_tn
Yes, it's really important to keep all your labwork together.  I have a spreadsheet with all my thyroid labs (since day one).  It really helps to be able to look back and see how things have changed.  

I have Hashi's and also pituitary resistance to thyroid hormone (PRTH).  Long story, but it keeps my TSH artificially high, so I went through my PCP trying to increase my levo so my TSH would go down, which it never will.  Other than that, pretty much the "usual" aches and pains that go along with being very close to sixty..ugh!

Please do post your labs when you get them.  I'm glad your doctor increased your meds,..it sounds like you're still hypo.
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1139109_tn?1326332522
It's so interesting to hear from other people that have the same issues as you do. People like you are such a good source of information. What you mentioned above about the resistance of the pituitary to the thyroid hormone...i've never heard of...again, of course I"m still so new to all this pituitary hormonal stuff that I don't know a whole lot. Which kind of Dr's are your currently seeing? I have a PCP which is fairly new to me. The former Dr.was ok for several years but I decided that I had to find someone else that would take better care of me. The jury remains out on even the new Dr. We'll continue to see how that goes before I make up my mind. I know it's important to have someone that listens & truly pays attention & cares enough to try to help you be as well as you can. I'm also seeing an endocrinologist and have been for a while now. I will keep on top of it and let everyone know how things are going as I get results. I sometimes don't understand why I have to be so complicated...gets aggravating as all get out sometimes!! Again, i'm here if you need to talk or need a friend!! Hugs! Again, Thanks for your help and information!!
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Avatar_f_tn
It is all very complicated.  Because my PCP was such an idiot, I was basically forced to learn everything I could about thyroid, which brought me to this site a year and a half ago.  That's when I got my current endo.  I absolutely love him...and I'm not easily impressed.  When I first made my appointment with him, I was prepared to call him an idot and stomp out of his office, but he totally changed my mind!!!  He listens, takes notes, treats by symptoms, orders the right tests...I just really lucked out.  He knows I spend a lot of time on the forum and always is willing to answer "forum" questions...he was a bit confused before he knew about the forum over why I was asking about thyroid issues that had nothing to do with my situation!

PRTH is relatively rare.  There's an enzyme that converts T4 to T3.  My pituitary doesn't have the enzyme, so it can convert, so it's starved for T3.  It "thinks" the rest of my body is starved, too, but it's not.  So, my pituitary just keeps cranking out TSH, which makes me look hypo, but I'm not.  My PCP had just kept saying "need more thyroid".  I got to the point where I was afraid she was going to kill me.

If you just want to chat, click on my name at the top of this post.  That will bring you to my profile page, and you can send me a private message.  (You'll see it at the top right of the page.)

Best of luck and keep us posted on developments.
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1139109_tn?1326332522
Hi it's me again after a LONG hiatus. I'm going to try to keep my story as short as possible. I have had 2 FNA biopsies (6 mos apart) on a nodule in the left side of my thyroid. Both the Dr. that did the FNA and my Endo are recommending surgery in the spring sometime of 2014. Supposedly this is due to size of the nodule. Also, it after 2 biopsies is deemed "indeterminate" results. It also has grown in size since first being diagnosed in 2004. Dr. discussed a bit the surgery. Dr. mentioned something about having to monitor calcium. I am going to research this in a bit. I know that Rumpled has had thyroid surgery. How are you doing after this? It seems as though I keep jumping from the frying pain into the fire so to speak. Just about the time I think that i'm kind of getting things 1/2 way lined out and leveling out something else comes along to knock the blocks out from under me. So, I'm asking for what your experience has been like since surgery and treatment. I'm still struggling trying to work to keep a roof over my husband and my head but seems it just keeps getting harder to do with all the health issues that have ensued since being diagnosed in 2004 with the pit tumor. I need advice from some of you lovely ladies that have been through the same or similar experience. I have also asked about MEN since I have been now diagnosed with a pit tumor and now the issue with thyroid. Any help or suggestions anyone could give me would be MUCH appreciated!
Cheryl
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1139109_tn?1326332522
Hi it's me again. I had replied and told you I'd get back to you with the results of the FNA. I have a 2.35 cm left thyroid nodule. The Dr. stated: While there are some features suggestive  a degenerating benign thyroid nodule, the absence of both colloid and well preserved macrofollicular groups precludes a categorically benign diagnosis". Hence since the 2 FNA's one done in June 2013 with basically the same results as this 2nd one they are recommending at least the left side of my thyroid be removed to exclude cancer. The very first ultrasound was done in Aug 2004 and the nodule has doubled in size since that time. Again, I had mentioned to my Endo about MEN syndrome because of having the pituitary tumor as well as now this diagnosis. I feel so worn out and tired all the time it's unbelievable. Just stinks being only 57 and I feel 87. Any advice you could give would be much appreciated!! I'm really scared to have this surgery as I've already been told some of the ramifications. I surely need your advice. Just not sure how to proceed once I see the ENT in Feb. Everyone here says have it taken out. I'm so surgery weary I can't tell you.
Thanks for your help in advance!!
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Avatar_f_tn
Have you thought about getting a second opinion before seeing the ENT?

Are you still on levo?  How much are you taking?

Do you have recent labs to post?
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1139109_tn?1326332522
Not yet on the second opinion as this is something I also am going to discuss with my Endo on Feb 6. Unfortunately, I'm still on Levo and my understanding is will be for rest of my life due to being hypo pit and having hashimotos. . My dose is 137 mcg. And it's been a little while since I had labs drawn. Again, probably something I'll discuss with Dr. When I see her on February 6. I'll see if I can scrounge up my last labs in the meantime. Thanks fir getting back to me!
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Avatar_f_tn
If you have Hashi's, then yes, like the rest of us with Hashi's, you will be on meds for the rest of your life.

Define "a while".  If you have any kind of symptoms, labs should be drawn every 3 months, at most, perhaps every six weeks.  Even if you feel well, labs should be drawn every six months.

Thyroid meds can help shrink nodules.  However, that won't happen unless meds are properly adjusted.  You need to get new labs and soon.
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1139109_tn?1326332522
I'm at the 6 mo checkup time with my Endo. I will have lots of questions and one is about labs. In fact I think I'll email her and see about having them drawn prior to my appt as there are not any set up prior to my appt which she usually would've had drawn so results would be back by appt day. Thanks for your advice and I'll post more info after my appt with my Dr. Thank your for  ur advice!! It's much appreciated!!
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Avatar_f_tn
Definitely...have your labs drawn well in advance (I usually go for about a week) of your appointment.  I always have to check to make sure my lab order is on file, too.  I also call the doctor for my results (usually the morning after the draw) so that I can review them and see what I want to talk to the doctor about.  If you get yours before your appointment, we can take a look at them if you'd like and suggest what you might talk to your doctor about.
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