[beauty2010]

#1058916

Hi
I am new here and wanted some advice.
I am a 47 year old woman who had an episode of Graves 4 years ago. I had been suffering for about 6 months with severe anxiety, muscle weakness, fatigue and for about two weeks with palpitations before diagnosis was made. At the time my T4 was 60 and TSH undetectable.
I was treated with Carbimazole. It took a long time to get better and I was off work for about one year. I have not really ever felt back to normal since the episode, and am less stress resistant, more anxious and fatiguable. But last summer I felt that I was making real progress and was getting better. My Labs were always OK.
From October 2011 I began to feel more tired and could not keep up with all my activities that I normally do outside work.
At Christmas 2011, I felt more anxious (worrying about things I would not normally), very tired and suddenly lost half a stone in one week, even though I was eating loads. However, my labs stayed exactly the same with T4 at 14 and TSH normal. I saw the GP who advised to go back on a small dose of Carbimazole – I took 10mg for about a week and this seemed to settle things.
Then 3 weeks ago, I suddenly felt very anxious, again very tired and again lost weight. I also began to eat in a pattern that was typical of my previous episode of hyperthyroidism – i.e. nothing but very high energy foods (chocolate). I saw the GP who did not know what to do, but recommended taking Carbimazole at 10mg. This did not hold it, and I began to feel worse and worse and over the last week I have increased it to 20mg which has helped a little. My labs came back with T4 at 20 (just above normal range) and TSH normal at 2.
I am due to see the endocrinologist next week.
I am just wondering if this picture is familiar to anyone, and does anyone else get symptoms before their labs increase. I feel as if I am at the beginning of the process of getting ill again and I want to nip it in the bud as I was so ill last time, but I am wondering if the endocrinologist will not think that the blood results are ‘bad enough’!!
Sorry this is such a long post
B

[Bobbi]

#1170929

I was diagnosed, and treated, back in 1996 (!!), so I’ve been travelling this road a long time. And I’ve felt really, really good most of that time. What I’ve discovered though is that I cannot tell — even with all this experience — whether my levels are truly off or not with any degree of accuracy. Except for blood tests, and heart rate, our symptoms are mostly SUBjective. Feeling fatigue and anxiousness can be a relatively normal response to stressful times (the holidays, for example). I sort of liken my response to these symptoms as a type of post-traumatic stress reaction: I was so horridly ill hyperthyroid that when I feel ANY group of symptoms that reminds me of it that experience, that I kind of cringe inside. But most of the time, it is something else, and it goes away. It is important to get things checked by the doctor when you suspect you might be hyper, just as you have done. But sometimes we have to wait until the OBjective tests have truly shown what is going on thyroid-wise. Do not tinker with the meds on your own, either. Take them as your doctor directs, even if you think they aren’t quite enough. Or are too much. Why? Because you need to be on a consistent dose of them for long enough prior to a blood test for the test to reveal what is actually going on in your body. If you are tinkering on your own, raising and lowering the dose based on how you feel, you are making the blood tests less reliable. And, you might be making things worse. I do know how hard it is to wait a month or so, thinking that you need more (or less) of the medication. But the only way to know whether you are appropriately treating the condition is to follow directions, and wait.

[sharilynk]

#1170930

Hi there Beauty2010 ~ I’m new here too. I went hyper four different times before finally having rai treatment and in each subsequent time after the initial episode, I could feel it coming and started having symptoms before my numbers went out of range. I would feel it coming, go in for labs, they would be normal but higher than the previous ones. So my doc wouldn’t do anything but tell me to come back in three months for another check. Each time on the second check my numbers were out of range and he started me back on methimazole. So I spent the intervening three months feeling terrible with symptoms. Once a doc told me that maybe I was having anxiety from life stress and would I like him to prescribe an anti-depressant, and I was incredulous that he would jump to that conclusion rather than pay attention to the stack of previous labs he had showing my history of hyperthyroidism. I refused the antidepressant, and the labs from that same visit came back showing my thyroid to be very hyper and he never again told me I was just having anxiety from life. It sounds like your doc took your reports of symptoms seriously so that’s good. If you have a doc who listens to you and thinks about what you say rather than just having his or her nose glued to the lab reports, then stick with that doc.
Best wishes~

[beauty2010]

#1170931

Hi and thanks for the messages
It is very difficult to know what to do.
However, if I let myself get ill enough for the numbers to really go up, then I will be causing distress to myself and to my family, children and my work. Also, more damage will be done to my body and mind with a longer recovery time. It doesn’t seem worth it.
I will let you know what the endocrinologist says on Tuesday.
Thanks again
B

[catherine]

#1170932

Hi B
How’d you get on with your endo yesterday?
Catherine
x

[Julie3588]

#1170933

I’ve had a similar episode lately that sounds familiar. I’m on Synthroid after RAI 2.5 years ago and was finally feeling really good this past summer. Since December 11 I’ve been feeling worse and worse, more and more hyper symptoms (anxious, depressed, shaky, losing weight). Labs were done in December, my endo said they were normal. Labs done again last week, levels were the same as December, but free t4 was almost out of range. The interesting thing is that my levels have been increasing since last summer, so my endo said that may be the culprit, even though technically they are “normal”. I’ve started a lower dose and am crossing my fingers that it makes me feel normal again. I’m also going to start seeing a therapist to rule out any other issues. Sometimes this Graves thing is just too much. It’s nice to hear that other people have had similar experiences.

[beauty2010]

#1170934

Hi everyone
Just an update
I think I may have ‘fallen out’ with my endocrinologist.
After the appointment he wrote a letter saying that I had a small goiter, pulse of 100 and fine tremor but because TSH was normal he thought it was anxiety rather than thyroid.
Thing is I just know I am not well and this is definitely not in my head. He wants to refer me to psychiatry!
I want to scream!
B

[gatorgirly]

#1170935

B,

Fortunately, I never had to deal with BS from my endo. However, shortly after RAI I developed all sorts of GI issues. I got a referral to a gastroenterologist my endo suggested, and he tried to tell me my stomach pains, chest/neck tightness, and regurgitation after meals were all anxiety. I am a pretty high strung, type A person (hence the Graves), but I never once suspected anxiety. Sure enough, I asked to switch to a different doctor within the practice, and he diagnosed me with severe GERD, a duodenal ulcer and a constricted esophagus – all issues that run in my family (except the ulcer…I just have a predisposition to them, apparently).

Maybe you do have anxiety, but I would highly recommend finding a new doctor who will actually help you instead of simply telling you to find a psychiatrist for something you feel is related to your thyroid. Labs don’t always paint the whole picture. You’re a human, not a lab specimen.

Feel better.

[Kimberly]

#1170936

@Beauty 2010 – I agree with gatorgirly…you know your body, and you *know* when something is off! A second opinion certainly sounds like a good idea.

Following are a couple of referral sites for endocrinologists:

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

American Association of Clinical Endocrinologists
http://www.aace.com/

American Thyroid Association
http://www.thyroid.org/

On the AACE site, click on “Find an Endocrinologist” link on the right-hand side of the screen. (You might have to scroll down a bit to see it). Be sure and select the specialty “thyroid dysfunction” when doing a search on this site. On the thyroid.org site, move your cursor over where it says “Public & Patients” (towards the top center of the screen) and then click on “Find a Specialist.”

The GDATF has also just launched a physician registry of doctors who have told us they have particular expertise in Graves’. To access the registry, go to the home page at http://www.gdatf.org and click on “physician registry” in the box on the top right-hand side of the screen. (Registration is required, but it is free). Because we are just getting started, we might not yet have a lot of listings in your part of the country.

Take care — and please keep fighting until you find a doc who will work with you to get some relief!

[snelsen]

#1170937

Hi B,
I am so sorry you had this experience with your doc, it is compounded by the fact that you don’t feel well. Of course o agree with the other posters who have written. You know yourself, your body. All the more reason to regard this as a chance to have a better and more compassionate endo on your life. I am sorr, too, for th hassle of trying to find another doc. That takes time, and more time to figure out if it is a right fit for you. The best to you, I hope you do not have to wait too many months for an appt. a cooperative GP or anyk other doc who knows you well could speed up the process with a phone. All, perhaps.

[beauty2010]

#1170938

Hi everyone
Thank you for all your support. I am in the UK so things are a bit more limited here.
My endocrinologist actually referred me to psychiatry, but I have declined the appointment as I am sure that this was a physical thing, not psychiatric (although my mood was certainly affected) and also because I am not suffering any mood symptoms at all at the moment. The reason I think it was physical was that I looked so dreadful and the fact that the symptoms responded to carbimazole – funny thing, but there it is.
Anyhow I am feeling loads better and am coming off the carbimazole. I am coming to the conclusion that stress has a big part to play in the disease and I am really trying to manage stress in my life. I am making sure that I sleep when I need to, eat more healthily and have taken up meditation and am attending classes for it.
I look loads better and my work colleages have noticed.
Anyway, I really have appreciated your support and I wonder if anyone else has had episodes like this.
B

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