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I Don’t Know If I’m On Graves Disease Spin Or Rinse

Post Published: 28 October 2009
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Category: Dear Thyroid Letters
This post currently has 24 responses. Leave a comment

Dear Thyroid,

I’m so sorry that you’re not well.   I’m even sorrier that your illness impacts so much of my life.   But I’m writing to advise that you need to stick to ONE set of symptoms, or else my endocrinologist’s head will explode, not to mention my entire body.

You apparently worked well until May ’09, when you were attacked by our own immune system for no good reason, and rebelled (understandably), by very quickly poisoning me with your nectar.   With a TSH of zero, you continued pumping out T4 daily until my levels more than doubled in a week.   At the beginning of that week, your efforts had my heart going at 200 BPM, and so we had to go into hospital.   And that was the beginning – or so we thought.

Because we were lucky to have a very good doctor (general practitioner), she soon worked out that I had not really been suffering panic attacks since March, all my symptoms were, of course, your little cries for help – cries I didn’t really notice or worry about at first, but which gradually wore me down.   I think you made my heart go so fast as a cry for help, and I’m sorry I didn’t listen sooner.

As the doctor pieced together the history and suggested a diagnosis of Graves’s disease, you did the honorable thing and gave me every classic symptom of Graves overnight – literally.   I woke up one morning missing handfuls of hair, having constant palpitations and feeling that my heart was beating SO HARD it was going to break a rib.   I shook constantly from the tremors, and was exhausted from the waist up despite being so restless from the waist down.

The symptoms made diagnosis and treatment very quick, less than 3 weeks passed and I was on beta blockers and carbimozole to help you cope better.   And 6 weeks later I felt markedly better, you were less stressed and so I, by default, was less stressed too.   I thought we had a deal at that point.   I figured we were going to be ok; we were the lucky ones who didn’t suffer long term and were easily fixed.

How wrong can a girl be?,   Boy… she can be off the mark.

Because you waited, took your time, then after 2 short weeks back at the job that I –  love; you struck again.   You did the same thing all over again.   My poor heart was so confused it didn’t know what to do, and the tremor was worse than ever before.   So I did the decent thing and got you tested, and waited.   Expecting to hear you were making me hyper again, I even wondered if they might remove you.

But you weren’t.

You were hypo.

My doctor kind of shrugged, admitted I had been wrongly medicated for a month, gave me levothyroxine, and told me to wait 8 weeks.   He couldn’t explain why you were giving me hyper symptoms even though you were now hypo.   And he started to have that look in his eye… the look of an endocrinologist who suspects their patient isn’t being honest about their symptoms.   The look I feared the most.

So we’re a week in to this medication and you can’t decide one day to the next.   Yesterday I felt good, even did some walking with my son, not a palpitation to be felt, just a smidge of fatigue.   Today my heart is trying in vain to escape my body through my chest walls. My legs want to run a marathon and I just cannot keep my eyes open from one minute to the next.   My doctor is content just to wait and see, but I can’t live on that basis – I just can’t.   Really.

So if you could stick to the symptoms of whatever the HELL is wrong with you today, so the doctors can fix you – fix us – and give me some semblance of a life back, I’d greatly appreciate that.

I love you, thyroid.   I really do, and I’m sorry my crappy immune system made you sick.   But you’re making it harder and harder to love you every day.

With love,

Suzy

(Bio) – I am 28 years old, living in North East England, with a patient fiancé and a son who lights up my life.   I work as a business advisor, a job I adore, and as you’ve just read was diagnosed with sudden onset Graves’s disease in June this year.   I’m looking for a new endo for a 2nd opinion since this episode began

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24 Responses to “I Don’t Know If I’m On Graves Disease Spin Or Rinse”

  1. Michelle says:

    Hey…I am 28 with Grave’s Disease and live in Boston, MA. My endo is pretty good if you want her information? I am in remission and have had a fairly good experience with her…Nothing is perfect, but hey, remission!

  2. Lolly says:

    Hi Susie,

    So typical of the medical profession to overdose you on carbimazole because that’s what they did and rather than take you off the medication completely and wait for your T levels to rise and then put you on a smaller dose, they now take the wait and see approach..this is a simple of case of doctors not knowing there Arse from there hand.

    You live in the UK so too do I, so please, please ask for hard copies each time you have your blood tests done, along with the normal reference ranges you’re entitled to them… don’t wait for symptoms to flare, when you were first diagnosed you should have been having regular blood tests every 4-6 weekly 4 weeks being the best time so that your medication could be adjusted accordingly.

    I’m not sure your GP does know what he/ she is doing and so sorry that you have had to go through this.

    Spin and Rinse I had to chuckle at that now I know were a certain someone got it from, I bet you’re from Liverpool?

    I hope you get better luck with a second opinion.

    I’m with you on the heart beats and the only way I could ever tell which way I was because when hypo I have hyper symptoms and vice versa is to back it up with labs and dose accordingly. symptoms can wax and wain and cross over.

    I too have Graves disease and now inactive GO.

    Are you on any medication just now? how long is it since you last had your TFT’s done and are they doing TSH, FT4 and FT3 very important with graves disease too do all 3.

    And yes just like Michelle remission is achievable as long as you have a good doc watching your T levels.

    Lollyx

  3. I had undiagnosed Hashi’s for years but nothing got done until Graves’ raised it’s ugly head.

    Most endos are really good at diagnosing Graves. Just because you have hyperthyroidism, though and high TSI antibodies, doesn’t mean Graves’ is your only problem. You need to get an ultrasound to rule out thyroid cancer, for instance, and possibly, if your endo deems it important, an RAI re-uptake test (not to be confused with RAI ablation, which will destroy your thyroid gland).

    Most endos will put you on antithyroid drugs for a couple of years to see if you achieve remission then ask you to have RAI ablation to kill the gland. I waited seven years, hoping that my gluten-free diet (celiac diagnosis) would help me achieve remission, which is often the case. No such luck, had my thyroid yanked (surgery, no radiation for me, thanks), and am now on the way to being stabilized. Thank goodness! Tired of being crazy and having brain fog!!

    Anyway, most of us hypo patients HATE our endos and I understand things are just as bad in the UK in that regard. But hyperthyroidism could kill you immediately, and you don’t want to mess with thyroid cancer. Please see and endo and maybe a naturopath in conjunction to treat your hormone levels most accurately.

    Nobody wants to do block and replace therapy, but in my case, with both Hashi’s antibodies (sky rocketed) and Graves’, I wish I had given it a try, maybe I’d have had a better chance at remission.

    I feel your pain, baby girl! You’re online, you’re curious and you’re proactive – three factors that can vastly improve your odds of recovery.

  4. Robyn says:

    I don’t have Graves, but can completely commisserate regarding the hyper and hypo symptoms, sometimes together! Ugh. And so young–why are so many with these diseases so young??? Damn our poor stewardship of Mother Earth.
    I hope you get to feeling better soon.

  5. BEE says:

    due to typing with my toes again, please change the word “like” to luck in the next to last sentence of my above post—or Katie or Liz can fix my typo-luv yous girls and guys

  6. Bee!
    That’s a smart, brave thing to say. It’s a strange situation when we realize that our very disease creates a mental state that we, ourselves, need to observe with a critical eye.

    I have to wonder how this contributes to the situation in which we find ourselves: that our own specialty diminishes our physical struggle as well as vilifies us for the mental stress that our disease creates. In a perfect world, they’d be MORE sympathetic and supportive, knowing full well that our anxiety is not our fault.

    Instead, they use that aspect of our condition against us and point to it as proof that we can’t be taken seriously.

    I very strongly agree that our best strategy is patience and watchfulness. After my total thyroidectomy last July I increased my meds too fast and went into hyper hell (free T3 of 630, range 220-430). Should not have listened to the advice from other online patients that I would surely need at least 180 mg of Armour. Should have proceeded slowly and carefully. If so, I would probably be a lot better off right now. Had to go back to hypo to keep my heart from bursting, now I’m back at square one, increasing slowly, testing every three weeks to figure out where my best levels are.

  7. BEE says:

    the hardest thing for me to learn when I was newly diagnosed ( 3.5 yrs ago) was to be patient. I pretty much begged for constant repeat labs and never gave my meds time to regulate in my body. I
    became part of the problem for almost 2 yrs. I’m telling you this because with thyroid disease there is no quick fix. The sooner you learn to get out of your own way and advocate for good medical care, the sooner you’ll be on a better path…I’m still reaping the seeds of my impatience and I feel as if i have slowed my recovery. Saying this, I will never stop demanding good care or expecting the docs to do their job. In fact, I’m giving another endo (highly recommended, of course LMAO) another chance if they pass my screening test.Good Like. —-B

  8. Ramirez says:

    i hope that this disease symptoms will disappear soon and you’ get healthy,greetings.

  9. Zari says:

    Carol I really have to agree strongly with you. I myself have adjusted my medication in small amounts to see what happens, sometimes with good results, sometimes with fairly unpleasant results. The key here as you said is patience. Also I would strongly echo what you said. Anyone who is letting someone online who has never even laid eyes on them tell them what their dosage should be has a bigger problem than their thyroid issues. I’ve developed a good feel for what my correct dosage is. We are all individuals and I have no idea what someone elses right dosage is.

    Zari

  10. Zari says:

    I can’t blame this on my thyroid, it’s just how my mind skips. I responded quickly to one of the comments and forgot about the original post.

    Suzy, I had Graves also. For a number of years little things would happen and then stop. Heart palpitations, intermittent high blood pressure and other stuff. I myself couldn’t entirely put my finger on it, so it’s not surprising my GP was confused. He told me to try a low salt diet for example, and when the BP went down and heart papitations went away, he thought that this had worked. In talking to my endo when things got worse he said that most likely the Graves had been mounting little probes prior to it’f full fledged assault. Makes sense to me.

    When the Graves really took off (TSH of 0.02, FT# of 650) what I hated most, aside from the constant anxiety and inability to sleep, was the irresistable nicely formed blwel movement I just had to have, to matter what the time or place, just about every hour. The organizing principle of my life became the location of either the nearest toilet or the nearest patch of shrubery.

    What I was told by my endo was that he felt that the medications to control Graves did not work all that well and had unpleasant side effects. Reading all the stuff here I realize something he didn’t add. Since my Graves seemed to come and go, we would have been forever playing catch up with the dosages, increasing them after the fact, and I would have often been either hypo or hyper. Coming here I’ve come to understand just how much I wouldn’t have wanted that.

    The I131 was painless. But then in an effort to avoid overmedicating me, I remained under medicated for about 8 months. I recently got a copy of all my records from that time and saw just how much I was undermedicated. Now I understand, being hypo merely makes you feel like you died, while being hyper can make you dead. But still I think he could have been a bit more aggresive.

    I’ve been sort of normal for about 3 years now. But I’ve never felt entirely the same. Sometimes I wonder, did I just think being slightly hyper was how normal feels? A couple of months ago as I wrote elsewhere here I took it upon myself to slightly increase my meds-I break up one of the pills and distribute it through out the week. I feel a lot better. My bloodwork came back yesterday and was good, and my BP is good.

    I think a lot of doctors look at the gross stuff, and the stuff they can measure. That’s how scientists think, and medicine is supposed to be a science, even if it sometimes seems like an art form as well. So when the endo looks at me and says gee, his BP is good, his cholesterol and liver functions are good, his TSH is good, and he looks healthy, it’s easy for them to discount my saying that I just don’t feel quite right. Especially since I’m in my mid 50’s and do have other medical issues.

    I think sometimes all doctors think the way my knee doctor thinks. He at least is very blunt about this. He says that surgery might at this point help my arthritic knee. He gives it a 60% chance of helping, and a 5 % chance of making things worse. Since I can walk around and function, he says that surgery should be postponed until when or if things get worse. Since he is doing other stuff (synsevic seems to help) I tell myself that when the surgeon says don’t operate I should listen. But there are days when I think 60% is pretty good odds. Other days I think about how simple surgery is surgery on other people and I’m sure I don’t want the surgery. It all depends on how much pain I’m in.

    Anyway hang in there Suzy and thanks for your post.

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