Thyroid Q and A or Running Hot and Cold

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When you have had enough.... (Read 401 times)

    Things have not been going well. I did do well with the marathon despite my low levels, but I had problems, and ended up in the ER less than 24 hours after I got home. I have since seen a cardiologist and had a stress echo and told that my problems are not originating in my cardiovascular system and that my heart is good. This is an endocrine issue. Endocrinologist said it was time to do an MRI of my pituitary to see if there was something that might explain my low TSH despite normal levels with all the other thyroid levels. She was expecting this to be negative. It wasn't. I have a microadenoma in my pituitary. Now, about 10-20% of people have this and never know it, and it never causes them any problems. They already know it is not cancer. The next step was to do screening labs to check the levels of hormones produced by the pituitary. They were all normal, except for the levels of growth hormone which were above the normal range. If you have a tumor secreting excess growth hormone, you typically see levels 2-3x above the normal range. Mine are only slightly above normal, however, it was not an age-graded result, and 52 year old women should not be anywhere close to the top of the range, let alone over it. Now I should have tests to see if they can suppress the level of growth hormone - if they can't suppress it, it means that something is secreting growth hormone in a way that is not under the control of the normal hypothalamus/pituitary control. I can't get that done here. I made an appointment to go to Cedar-Sinai in LA to the pituitary center. I have an appointment on Monday. I thought I was going for a complete endocrine evaluation, now I am being told what I have is a 1 hour consultation with the endocrinologist. I explained my situation, told them that I was planning on staying in town for a week+, and they said they would try and see if they could get testing done while I was there. Sigh. If this does not work out the way I hope it will regarding complete endocrine evaluation, I will have my PCP try to arrange that kind of "visit" at Virginia Mason in Seattle (which at least will be a shorter flight for me). As far as I can see that will be my last shot at this. I have seen 2 internal medicine docs here in Anchorage and both told me that with my low TSH, I needed to be seen by an endocrinologist. Roll eyes In the meantime, my endocrinolgist informed me that since my pituitary is capable of producing all those other hormones, she sees no reason it isn't capable of producing TSH. She does not want to run any tests other than TSH and FT4 and wants my FT4 to be no higher than 2.0. I have had my thyroid levels checked 17 times since my surgery - the only time my FT4 was ever "no higher than 2.0", was when I was on a dose of 100 mcg of Synthroid( and I had to really fight not to be dropped to 88 mcg). My FT3 levels fell to 255, 8 weeks later FT3 levels were 254 - it was after that she agreed to start upping my dose of Synthroid. I was absolutely miserable and not able to function on pretty much all levels at that time, and it was very obvious to her, my PCP and my GYN, that there had been a drastic change in me. As it stands right now, I have a 2 month supply of my meds on hand - and currently no doctor willing to prescribe based on free levels and clinical assessment. As for my endo? I will not give her the opportunity to cut back my medication. I have had enough - I'm saying "when". I won't be around for awhile, I will update you on my progress when I get back. I ask that you keep me in your thoughts and prayers and keep those good vibes coming my way. Cheryl

    Life is not measured by the number of breaths we take, but by the number of moments that take our breath away...(unkown)




    Go With The Flow
    Thyroid Support Group

      . I ask that you keep me in your thoughts and prayers and keep those good vibes coming my way. Cheryl
      Oh (((Cheryl))). There aren't really any words I can think to type to help you out right now, but I am thinking of you. You have been through a lot but you are so strong and I KNOW you will get through this. Hang in there and check back soon. In the meantime I will be keeping my fingers and toes crossed that you are able to get some answers in LA. Is removing the tumor an option?
        I'll definitely be thinking of you and hope all goes smoothly. What a very frustrating situation! I hope they can understand you've come a long way and need an expedited evaluation. What a relief that the tumor is benign at least! I know some test results take a couple weeks to process, so that may be the kind of time limitation they'll be under in terms of giving you answers. Keep us posted on how it's going if you have internet access in LA.

        Use your momentum...keep going.  You know you can make it.


        Cats Are People Too

          Cheryl: I am so sorry about this. How scary. Please keep us posted. You have been a wealth of information for me in the past. Basically, my hero, too and even though we have never met personally, you are in my thoughts and prayers. I know you can get through this. Kate
            Finally making the decision to stop seeing my endo has lifted a huge weight off my shoulders. I have been struggling with this for a long time, and now it's done. I talked to Cedar-Sinai this morning and I will be able to get testing done there, and if more is required - I can have some done at home, my PCP will be the liason. Now I'm looking forward to enjoying some sunshine between tests and stuff, and planning on running along Venice Beach while I'm there. I'm trying to think positively, after all - in a place like that they must be used to seeing patients with unusual cirmumstances.I think I'm actually starting to feel better too - might be this last dose increase is kicking in - it's been a little over 6 weeks now. Shaunna - unless they prove that the tumor is secreting large amounts of hormones (and I don't think it is), they won't do surgery. I don't want to go that route - the pituitary is about the size of a grape - any little damage could screw up all kinds of hormones permanently. I don't care how "safe" they say it is. I have enought trouble balancing my thyroid meds, I can't even think about trying to balance other stuff too. Thanks so much for your support - it is such a help to be able to vent some of this stuff. Now, on to the next big problem - how to pack a week's worth of stuff into a carry on bag Wink

            Life is not measured by the number of breaths we take, but by the number of moments that take our breath away...(unkown)




            Go With The Flow
            Thyroid Support Group