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  • lynseylily
    Participant
    December 1, 2011 at 10:36 am
    Post count: 1
    #1058752

    Hello,My name is Lynsey and I am new here…So to start off I am extremely frustrated with the medical field and the insurance companies..So here goes; I was diagnosed with graves disease when I was 17, which was 18 years ago..after a year of trying to control my levels and being unsucessful my Endocrinologist gave me the option to either do RAI therapy or have surgery to remove my over active part..I chose RAI therapy, which in turn caused my thyroid to under active..My gland has always been very hard to control the levels, never staying controlled for any more than a year..I have had ultrasounds done as well as a biopsy for a mass they had found..this turn up to be non-cancerous..In 2005 had my daughter and through out my prenancy I was monitored very closely by my endo and my OBGYN making sure my levels were stable so that it would not affect my daughters thyroid..After my daughter was born it once again went out of control..I got it under control but the treating Doctor ubruptly left practice leaving me to find another Dr..So this is where I am now.I have been treating with my general practioner for 3 years now..out of those 3 years I have been telling him for the past 2 that my levels are not normal, I can feel it..I know my body..first off, I know because of having this disease for so long and having many many blood test, I know the proper test that need to be run in order to get an accurate reading.This Doc has only been running a TSH and a T4, that is it..apparently my levels are coming back low but still in the range of normal..(makes no sense to me), he tells me I am within the 40% of normal range..so to me, I am not even coming in at half normal levels !!! okay..I have gained over 30 lbs in the past year, my skin is extremely uncomfortably dry, I lose hair like crazy, I have the worst depression and mood swings, I am tired but yet can not sleep and so on..So I found this Dr that is treating patients specifically for thyroid issues, except she does not accept my insurance..I went and saw her and she explained more to me than I ever knew, she ran a complete lab panel of everything..come to find out, this Dr. that I had been treating with has been overdosing me on my meds, because of the lack of care I know have a high BUN (borderline diabetic), my adrenal glands are not functiong properly, I am not producing hydrocloric Acid (so I am not breaking food down), I have contracted a parasite somehow, more than likely because my immune system is being compromised, monocyctes are of the chart, and many many other issues..As explained to me, I am in a "thyroid storm" and my body is now attacking itself..So yesterday I went in to the Dr. who does nothing and a month ago i requested for the 5th time to be referred to an Endocrinologist…he once again has DENIED me treatment, saying I am fine and once again I may be low but I am still coming in at 30% normal, yes 10% lower than before..So I was instructed to stay on the Synthroid .333MCG as before because it is working so well..lol..I told the doc who I had seen and gave them the bloodwork..telling them they had 24 hours to contact with and explanation as to why I have been denied proper treatment and their neglect has caused me to have numerous serious health issues and will continue to do so if not treated..to treat with this new Dr., it is going to cost me around the 9k range..which is fine, I trust her..having my life is worth way more than 9k, I have a 6 year old little girl I want to see grow up…

    Kimberly
    Keymaster
    December 1, 2011 at 12:09 pm
    Post count: 4294
    #1169808

    Hello – I see that you also posted on the Foundation’s Facebook page, and I am re-posting the response:

    Thanks so much for sharing your story. Obviously, you can’t put a price on good health, but $9,000 is certainly a lot to spend on various treatments! Hopefully, your doc has all the right credentials, board certifications, etc.. The American Board of Medical Specialties certifies doctors in various specialities; you can check on a doctor at http://www.abms.org to see if they are board certified in endocrinology. (Registration is required, but it’s free). Your own state’s Medical Board can also provide information regarding the licensing status of a particular doctor. Hopefully, everything checks out fine with your doc, but I wanted to bring this up, as there is a major case going on right now in Colorado where a chiropractor was passing himself off as an endocrinologist and charging patients a lot of $$ for unsuccessful treatments. <img decoding=” title=”Sad” /> Wishing you all the best!

    emmtee
    Participant
    December 1, 2011 at 9:38 pm
    Post count: 148
    #1169809

    $9K is a lot to pay for treatment that should be covered by insurance. Surely your insurance company contracts with other endocrinologists. You should be able find a new general practitioner who would be willing to refer you. It doesn’t sound to me like you’re getting very good care from your current GP, so you might want to make a change in any case.

    I don’t know why so many doctors are unwilling to give referrals. A few years ago, my mom had a spot on her forehead that she thought was suspicious. She asked her GP to refer her to a dermatologist. He said no, that it was nothing. She changed GP’s and her next GP didn’t think it was anything either. She changed GP’s again and the third one gave her a referral. It’s a good thing, because the dermatologist found that it was pre-cancerous and needed to be removed.

    I tried out the ABMS website that Kimberly referenced and looked up all my doctors just for fun. There were some that I couldn’t find right away, so I tried looking them up without entering the city/state info and was able to find them that way. Some of them had moved and not updated their location and some of them had their location listed as "private."

    Good luck getting the medical treatment you need.

    Marci

    RebeccaJT
    Participant
    December 7, 2011 at 4:12 am
    Post count: 61
    #1169810

    Hello

    I am no expert but just to chime in that I’ve just had a dual diagnosis of Hashimotos disease as well as Graves and I have hashitoxicosis which means I can turn up normal or hypo blood results and still be spiking hyper in between, sometimes four hourly causing mental, physical and emotional havoc like you describe. It has been extremely difficult to get doctors to take me seriously. I have been undiagnosed since I was 17 – I am now 39 and got dx with Graves 2 years ago – and I have been, according to my third doctor (like you it’s been a battle) dangerously sick for ten years, and very very ill indeed for the last few years.

    Without a full panel of antibodies for both Graves and Hashis your doctors will not know what they are dealing with. Like you I have been fobbed off a lot. Also I am due to have an urgent thyroidectomy with a very pre-eminent endocrine surgeon here in London, UK, next month as he has convinced me that the given the long period of lack of treatment, and the sustained antibody attacks, my thyroid is destroyed and it is the INFLAMMATION in the gland that is driving a lot of my symptoms, which makes my blood results at times irrelevant. I am often turning up normal bloods and I feel very sick and INSANE at times!! I also can’t sleep, am losing my hair etc etc etc.

    I believe that here in the UK that is why a partial thyroidectomy (or sub total thyroidectomy) is no longer standard procedure as the process of managing levels post op are difficult. Also the antibodies have something left to attack.

    Also my surgeon is very well versed in autoimmune disease and the link between thyroid / Graves / Hashis and autoimmune gut problems and food intolerances. It could be that you have low ferritin stores which is contributing to hair loss, and low vit D which will impact mood. Again a competent doctor would run all these tests for you. I have very low levels and I’ve been told it’s to do with poor gut absorbency. This would of course also be impacting the absorbency of replacement if you are taking it.

    You can read my full story (scroll to the better news at the bottom of the thread!!) on ‘What to ask surgeon re Thyroidectomy’.

    I am not a doctor and I am not offering you a diagnosis but I share your frustrations and I know for me that I’ve had to really push. However, I wish I knew at the beginning what I know now – my thyroid is inflamed, toxic and out of control and in my case the whole thing needs to be removed. I am now utterly convinced of this. Particularly as I have Hashis.

    I was advised to find a consultant endocrine surgeon who specialises in Graves, who has done lots of operations, and to just go for an initial consultation. I really wish I’d done this at the beginning. He makes my endo look like a toddler, the man is a walking computer brain, it was a completely different league of understanding of this disease. Plus a good doctor will refer you on elsewhere if they feel they are not the right doctor to help you. I appreciate I am not in the States on insurance, but I’ve been battling the mostly amazing, sometimes dreadful UK National Health Service and in the end have paid for some of my care privately. Perhaps before you commit $9,000 it would be worth spending $300 on a second opinion?

    But do keep the faith, help is out there.

    Best

    Rebecca
    x

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