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  • rebronson
    Participant
    January 18, 2014 at 5:56 pm
    Post count: 1
    #1060323

    So it’s been just over 2 years since having my Total Thyroidectomy (1 Nov. 2011). I oped for surgery versus RAI for a few reasons:2 young children, single parent being two, and my thyroid was really enlarged and constantly felt like I was wearing a 5 size too small turtleneck. Had a great endo and an even better surgeon that stated he was really surprised how large it was.

    But now, here I am, feeling extremely hypo, terrible, depressed, tired, achy, almost 80 pounds heavier than pre-TT. To top it all off, no medical insurance or reasonable means to pay.

    I moved across country since my surgery and for a short time had insurance and was able to get a few labs done. Previous to the appointment I had been without my medication for over 2 months, I could barely carry my purse and walk in to the appointment from lack of energy. I had been on 200mcg of levothyroxine before having a lapse of medication. Upon the first appointment where I currently am living they started me at 100mcg which definitely wasn’t enough then things fell through with insurance and I wasnt able to get back in for a few months and the Dr only increased it to 125mcg and did not send me for labs. And here I am stuck on 125mcgs and crossing my fingers that the doc will keep refilling the scrip for me until I am able to get back in, for the last 6 months so far so good. I know it’s not high enough, I feel terrible. I want to sleep all the time. I get cramps in places I have never gotten cramps before, in my neck/shoulders, near my ribs and stomach/abs if heaven forbid I cough or sneeze too hard, legs, and feet. I have more often that not a considerable amount of swelling in my limbs and maybe my eyes? When I look to the side and up or down my eyes feel really strange and I sometimes see what looks like a dark circle? My joints hurt, ankles/feet, hands, and knuckles sometimes while moving or grasping things it hurts so bad I have cried out. My menstrual cycle has gone from about 4-4.5 days to lasting weeks (generally 2-3 weeks and up to 8) at a time with heavy bleeding leaving me even more exhausted and extremely dizzy and light headed at times. I sometimes feel like I just can’t think, I am extremely forgetful, I forget sometimes what I was going to do even as I am doing it. Depressed and moody, these are huge, the moodyness contributes to being even more depressed and feeling horrible. It’s embarrassing that I’m 29 and nearly everything can set off the tears. One of the more dealable things is the dry skin and scalp, my hands will sometimes crack and bleed on the palms and knuckles.

    For religious purposes I am not supposed to drink coffee which leads to more guilt but sometimes I feel like it’s the only thing that gets me through the day energy wise and helps keep me slightly more regular going #2 with out uncomfortable side effects.

    I am just feeling down about it and I try to put on my game face, especially at work, but it is especially worse while on my cycle and I have a hard time even pretending to have energy.

    I really miss working out and doing yoga but with the excess weight gain lack of any energy it’s seemingly impossible. I really miss knitting and quilting but even doing those my arms become so tiresome and my hands often get really tingly and numb.

    I feel terrible laying out this whole sob story but no one I know even has an idea of what is going on with me because they just don’t believe or care to listen.

    I am hoping to get some sort of insurance, I started filling out the application on the exchange lastnight but it went down for maintenence.

    I just need to it will be ok….eventually. But right now I’m somewhat wishing I was still hyper pre TT, as bad as I felt then this is much much worse.

    :(
    -Rose

    snelsen
    Participant
    January 19, 2014 at 8:45 am
    Post count: 1909
    #1181946

    Gosh, Rose, I am so sorry that all of this is hitting you all at once. Clearly, you do not feel well at all, rather you feel AWFUL, at many different levels and in many different places. I am so, so very sorry. I do care, and so will many others here.

    As you already know, your biggest problem here is access to the medical system, i.e., a good doctor who will take a careful history and physical, and take care of you. AND not scold you! Most would not. But you are very fragile right now, and empathy and caring from the the health care folks will be as critical and as important as getting you on the right medications.

    Regarding payment and insurance, this is just anecdotal information, but I encourage you to try very very hard to get covered with the Affordable Care Act in a timely manner, as soon as you can. I am aware of all the issues that presented themselves as barriers, but they are resolving or gone, and this is super important for you, so you can get care. Three of my neighbors have had very good experiences in the past few days.

    Do I understand that you DO NOT have insurance at this time? I know you are working, and I am sure it is very very hard to do that, take care of your children, and be sick. Is this cause you have not been there long enough, or that you are hourly, and can’t get it? Whatever the reason, there have to be alternatives for you to get the good medical care that you need.

    In my area, we have some free, and/or very low pay-what-you-can medical clinics. They are not urgent care, but established clinics. Is there anything like that where you live now? Can your wonderful formal endo contact a doc he knows in your area, and ask that you be seen? I know you have seen a doc where you live, the one who prescribed 125mcg of thyroid hormone. What would happen if you called the office and told them you were very sick, and your periods were lasting three weeks, you are feeling very weak. I guess the other alternative, certainly not a very good one, is to go to an ER, but you would not have consistent care that way. Although if you continue to have that amount of blood loss, with all your other symptoms, you could end up there in an emergency situation, which is not necessary.

    I KNOW YOU KNOW THIS, but just sayin’. You need to see a good doctor who will examine you with all your symptoms, and order some labs. I am very concerned about you.

    As you might suspect, certainly many aspects of the way you feel are directly related to access to care which is directly related to taking the right amount of thyroid hormone. Which, as you already realize, you really, really have to have now that you have had a TT.

    Do write again. Once you have medical care, and get your thyroid hormone managed, I hope that many of your other symptoms go away. As you know, we are not doctors, here, but weight gain is part of being hyPO, as well as constipation issues and some of the other things you mentioned. So the biggest two jobs you have are to apply for insurance, and figure out how to get to a doctor. I wish I could help you do that.
    Shirley

    Kimberly
    Keymaster
    January 21, 2014 at 12:59 pm
    Post count: 4304
    #1181947

    Hello – Shirley gave you some great info. Here is a link to the free/low-cost clinics that she mentioned:

    (Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

    http://www.hrsa.gov/index.html

    If you scroll down a bit, you will see an orange box on the left that says “find a health center”. Please take advantage of one of these clinics to ensure that you are getting the care that you need and deserve!

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