[CharityR]

#1060566

Hi All… I’m not new to Graves’, but I am new to this group. I’m going to apologize for the lengthy post in advance, and I just need a little emotional support from people who have the same problem.

I was diagnosed with bipolar disorder about 10 years ago. I took the medications that were prescribed to me, but they didn’t help. I told my psychiatrist at the time that they weren’t helping, and he threatened me with electroconvulsive therapy. I lied, said I was better; I stopped seeing him, and weaned myself off of the medications.

A year later, I went to the ER for frequent periods and really bad cramps. The ER doctor spontaneously decided to test my thyroid, found that I had hyperthyroidism, and advised me to see an endocrinologist. Went to the endo, she diagnosed with Graves’, and said that I’d been exhibiting symptoms for at least two years. I discussed the bipolaar diagnosis with her; she and my primary kept an eye on my psychological symptoms, and reversed that diagnosis. Apparently the psychological symptoms of hyperthyroidism were severe, and improved after treatement. I opted for RAI since it was the cheapest treatment (I didn’t have health insurance). After RAI, I started waking up at night with tears streaming down my face; I couldn’t sleep because it was so bad. The endo told me that I had “eye allergies,” but I have allergies and knew that something wasn’t right. A couple of months later, I went back to the endo, and was diagnosed with Graves’ ophthalmopathy. However, she refused to send me to an ophtalmologist for the eye problem because she felt that she could treat the problem. I felt that she was arrogant, and wouldn’t listen to me.

I finally got health insurance, so I found a new endo who referred me to an ophthalmologist. I got really lucky with my eyes; I didn’t need surgery since the eye problems weren’t improving, but they weren’t getting any worse. Unfortunately, the new endo kept making mistakes on my prescriptions, and my thyroid levels kept going crazy as a result. I ended up finding another endo. While his bedside manner was lacking, he and his PA got my thyroid under control. I saw them for a couple of years, even though I lost my insurance.

Two years’ ago I had to leave my endo because he was too expensive ($400 every 2-3 months), and I was down to seeing a primary that thought she could keep the thyroid level. She ignored the lab results and the symptoms of hypothyroidism, and diagnosed me as depressed. I continued seeing her because I didn’t have much money, but she was released from the practice she was a member of, and I got a new primary that was very unhappy to see the lab results from the past two years. Apparently I had problems with hypothyroidism for the previous year and a half. I thought that I’d found a good primary, but now I’m not so sure.

Even with my labs within normal range, I’ve had joint aches, muscle pain, frequent headaches, fatigue, hot flashes, feeling cold almost all of the time (except when I have the hot flashes), trouble remembering stuff, and frequent illness. I joke about the frequent illness saying that if my neighbor from two blocks away sneezes while I’m downwind from him, I get sick. None of these symptoms has ever been addressed, despite the fact that I’ve mentioned them on every visit to my past endos or primary doctors.

I recently got a new job, and my employer has a strict attendance policy. My employer noted my frequent absenteeism, noticed that I was bringing in doctors’ notes, and offered me a reasonable accommodation: if I call in sick and bring in a doctor’s note, the absence doesn’t count against me. They gave me paperwork for my doctor to fill out, and he refused to fill it out because he says he doesn’t have enough “proof” that Graves’ disease contributes to my frequent illness problem. He says that Graves’ can make me susceptible to other autoimmune diseases, but will not make me susceptible to “common” illnesses.

I’m about to lose my job, but I have insurance now. The thing is, I don’t know if I’m ever going to be able to find a doctor that would be willing to look at me as a whole, rather than just look at me as a thyroid. I’m tired of losing my job because I’m sick a lot, and I’m tired of being told that I “should” be fine when apparently I’m not.

[Kimberly]

#1183372

Hello and welcome! I’m sorry to hear that you are going through all of this, but am glad that you found us. Unfortunately, we hear from many patients who were initially misdiagnosed with issues like anxiety, depression, and bipolar disorder before they finally got a correct diagnosis and treatment. We are fellow patients here, not docs, but here are a few thoughts that will hopefully be helpful…

If you would like to pursue getting treatment from an endo again, the “Looking for a Doctor” thread has a few search engines that will let you look by city/state/zip. You definitely deserve to find someone who will look at you as a whole person! I’ve not heard of someone with insurance having to pay $400 for an office visit – although I guess that will vary depending on the practice, the local market you are in, and the insurer.

You mentioned that your labs were in range, but is your doctor testing Free T4 and T3 in addition to TSH? TSH alone is fine for people who are stable and feeling well, but with your continuing symptoms, it would be worth checking T3/T4 as well.

Is your prescription for replacement hormone consistently filled with a brand-name product? Although the active ingredient should be the same between different brands and between brand/generic, it’s possible for the body to absorb different amounts of the different drugs. Another thought is that you are starting to see a little more acceptance in the medical community for trying combination T3/T4 therapy (for example, using Cytomel+Synthroid) for patients who continue to feel unwell despite “normal” thyroid labs.

Although Graves’ might not be directly causing your other illnesses, I think that any time the body is under duress (whether it’s from a chronic illness like Graves’, from lack of sleep, or from emotional stress), the immune system tends to be compromised. In the meantime, have you asked your primary care doc to check your white blood cell count to see if that might explain why you seem to catch other illnesses so quickly? It seems like that would be worth checking.

As for the work issues, any chance that part of your job could be performed at home? That’s at least worth asking.

Take care – and please keep us posted on how you are doing!

[connypie]

#1183373

hi charity, i understand your story quite well.i was once told by a counselor?that i had to see a psychiatrist or she wouldnt prescribe my meds.saw the psych dr.and once i told her i had graves and a child on life support at home.she said i was the most normal person she had seen that day.i was diagnosed at 28,but can retrace to a teenager having symptoms.i was always full of ideas but when it came down to doing the work,i would run out of steam very quickly and had to sit or stop.i was frequently called lazy.great for your self esteem as a teenager.a little sarcasm here.lol.when i was finally diagnosed and got to see a real endo,he put me first in line for RAI.oh what a relief.i also have the eye disease but havent needed surgery.i seem to be one of those that is very sensitive to my levels changing.and stress seems to affect me greatly.but we all have good days and bad.have you ever been tested for other auto immune diseases?my friend has lupus and if there is a cold germ a block away she will catch it.also have you had your vitamin d level checked?mine was less then half.ive been taking vitamin d(prescribed by dr) and it has made a difference.iam less sore and achy.i have had to tell a dr,i gave him a list of symptoms and said this is the problem and it needs to be looked at today and if he is not comfortable treating me i will find another dr.i hope you will find a good dr,that takes you seriously.afterall it is your body and you should know how you feel.merry christmas conny

[Raspberry]

#1183374

Hi Charity, I hope you are still around just realized your post is from 12/10. I really feel for you. I’ve been diagnosed with various forms of depression almost my whole life and now I know much of that time I was too low on thyroid hormone. My thyroid only got taken seriously once I officially became hyperthyroid. In a way it was a blessing because I really believed up until then that I just had all this depression and general wimpiness as some sort of character trait.

I am a little over two years on the path of managing my Graves with methimazole – so I’ve still got my thyroid but have experienced (and still am) all the ups and downs. The biggest thing I’ve learned is this all of my values TSH, FT4 and FT3 can be “in range” but there is only a very narrow part of that range where I actually feel well. I have to advocate and convince any doctor I see of this – sometimes this goes well….and sometimes not. I keep meticulous records of every lab and over time I’ve been able to learn what to shoot for and have evidence to present to the doc. Perhaps you can start a file to find your wellness ranges too – you can always get your old records and look back on how you felt at different lab values.

I still think it is profoundly unfair that any of us should need to advocate for ourselves to this degree just to get decent thyroid treatment in this country. I hope one day that there will be a serious movement to bring about change.

Also I really hope you don’t lose your job – if your employer is open to it have them look at a few of the websites for people with hypothyroidism and see how debilitating it can be. Maybe your employer will be compassionate. Hypothyroidism because that’s where many are stuck once they get on replacement a lot of the time and even on anti-thyroid drug therapy the doctors tend to keep you on the low side.

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