[beauty2010]

#1059887

Hi
I wanted to post this in case anyone else had similar problems to me.
My story is that during 2012 I had separate short lived (weeks) episodes of anxiety, fatigue and weight loss with normal appetite sometimes associated with what appeared to be mild exopthalmos (noted by medical friends), but during these episodes my bloods did not change (TSH completely normal). My GP treated the first two episodes with carbimazole, but the third went away on its own. My endocrinologist assured me these symptoms were not caused by my thyroid problem, and suggested that I stopped the carbimazole which I did in the summer of 2012 only for symptoms to recur later in 2012 and Graves recurrence diagnosed in the Nov/ Dec of 2012 (TSH undetectable, T4 30).
My endocrinologist wanted me to see a psychiatrist because of the symptoms with normal bloods and because he said that my symptoms even when my levels were abnormal were too severe (I am not sure where he was coming from on that one as I am sure everyone varies). I was initially very reluctant and refused to see a psychiatrist as I felt strongly that the symptoms were thyroid related.
I did eventually visit the psychiatrist who did not find any mental illness and discharged me with no treatment, although she said it was fairly common for people with a long term condition to get symptoms of that condition even when biochemically there was no evidence of the condition at the time of symptoms, as well as to get symptoms when there was biochemical changes.
I saw my endocrinologist again today and asked him if the symptoms I had before my bloods changed could have been due to an increase in autoantibody production as I understand that the autoantibodies themselves have an effect on tissues. This would fit in with the mild exopthalmos that others had noted. He said that this could be possible although there was no way of knowing this. I was really pleased that he was prepared to admit to there being a possible cause of symptoms outside of changes in TSH levels, as it helped me to understand my symptoms better. I hope this might be helpful to other people who have unexplained symptoms which they wonder might be thyroid related. Obviously these symptoms may have many causes, but I know that it is a common cause of frustration to Graves patients that symptoms in spite of normal blood levels are dismissed as ‘all in your mind’
Bxx

[amosmcd]

#1178540

Hi, Beauty–

I just got my labs back yesterday after a month on a lowered dose of PTU. My endo’s office left a message that my labs were “perfect”. So I had to call back and ask what they were.

Last week I had an episode of a heart rate of 116 for which I had to take a beta blocker. I was having heart palpitations, and feeling very anxious.

I also ended up waiting a week to speak to the endo herself about questions I had regarding my upcoming TT. I had to let work know if I was going to take time off, I had to know if I actually was going to have surgery (the decision wasn’t final on my part yet) and so was under pressure to speak to her before my next appt, which isn’t until a week before surgery, so I was definitely feeling anxious. She seemed to think that all this was due to a psychiatric anxiety episode rather than a Graves’ anxiety episode. I’m not normally a super anxious person, but since Graves have become more anxious overall. She wanted to make sure I knew that having my thyroid removed wouldn’t remove “other issues” I might be having. So basically saying I was a psych case. I’m sure my having normal labs this time has just just cemented her view. But my labs since diagnosis have been all over the place.

You’d think endo’s would know better, and I’m going to discuss this more in detail with her at my appt. Endo’s should be more supportive and definitely not send people to psychiatrists without considering all the possible other reasons for how we feel. She hasn’t referred me to one, but it’s insulting that she thinks I’m anxious due to mental issues rather than just being stressed out about TT and her not returning my calls for a week!

Anyway, it’s certainly disheartening to be treated like that! I hope things get better for you since your conversation with the endo.

Take care,
Amy

[Harpy]

#1178541

We all have little abberations in our psychology and behaviour, but that’s ok, that’s what makes us individual.
The problem with GD is that some of these things become heightened and exaggerated which may result in a mis diagnosis of mental illness, as your body heals these issues usually fall away, but in some instances, particularly with anxiety, the reinforcement of the behaviour during the GD period is enough that the symptom persists even after GD stabilises, so may require some specific attention to correct it. This may be just simple reaffirmations to oneself to reinforce different behavioural patterns.
Trying a few stress management techniques, to find one that works for you may help minimise some of the psychological symptoms of GD, my partner found yoga and simple self reflection to be helpfull for her.

[vanillasky]

#1178542

This is all too a familiar situation. I have been told this so many times, I could just puke! No, you are not mentally ill. What constitutes that anyway? Shooting somebody at a school house? This is pure rubbish to me. You have a thyroid disease – it’s plain and simple.

I no longer “buy” this diagnosis of “it’s all in your head.” No, I think it’s all in our thyroids.

Phooey on them!

[beauty2010]

#1178543

Hi
Thanks for all your responses
amosmcd – yes, it is irritating when you feel dismissed and they say it is all in your mind. I have also had the experience of symptoms in spite of ‘perfect’ lab results. I think that there are different reasons for getting symptoms in spite of normal labs, one may be as Harpy said that our bodies get ‘used’ to the anxiety response which has been reinforced during an episode of Graves and the other is that there is actually something physical going on, for example, perhaps as my endocrinologist admitted the autoimmune process itself has some effect on the brain. In any case symptoms outside blood changes seem to be very common indeed and endocrinologists should admit this, rather than ‘pathologising’ everyone with a mental health diagnosis. In some cases mental health support can be very useful, but it should not be imposed on the patient, and there should be less black and white thinking, i.e. either its your thyroid or its mental health – the situation is far more complex than that. Good luck and I hope you TT goes well
Bxx

Hi Harpy
Yes, I think that patterns of behaviour during Graves episode (especially the first episode which is often longer and initially misdiagnosed) can stay with us, but I do wonder if there is also another factor other than hyperthyroidism itself which causes symptoms outside of episodes of hyperthyroidism. I don’t think that there is any definitive answer on this, but there are suggestions in the literature about whether the autoimmune process itself can cause symptoms in predisposed people, as the autoimmune process is not confined to the thyroid but also effects the brain.
Thanks for your reply and I hope your partner continues to do well. I don’t do yoga but I do go to a meditation class which is fun!
Bxx

Hi Vanillasky
Thanks for your reply. It made me laugh and cheered me up.
Bxxxx

[Kimberly]

#1178544

This presentation from our 2012 San Diego conference on “The Emotional Impact of Graves’ Disease” was very well received.

It’s certainly a complex issue. Are mental/emotional symptoms due to Graves’, are they part of the normal course of dealing with any illness, or is there another disorder involved that could benefit from treatment? This can all be really difficult to untangle. But for anyone who is having continuing quality of life issues, it’s certainly worth exploring *all* of the possible options.

(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.youtube.com/watch?v=CB8_5rbCso8

[missygail]

#1178545

When I first found out I had Graves I was having extreme pain in my thighs, as if I had done 100 squats that never ended! When I went on the methimazole it went away ( I have since learned that muscle weakness and pain especially in arms and legs is normal with Graves). I have been off the med since August however there are still times my legs ache just as they did before. I get worried that my levels are bad again but when blood work is done they are great, last level was 1.4. I have wondered if hormonal fluctuations as in menopause can cause what feels like Graves symptoms? Anyone else had this experience? It is frustrating because doctors want to tell you it must be something else, even though I think it’s all related! Thanks for your input

[Kimberly]

#1178546

Hello – Hopefully, you will get some additional responses here, but keep in mind that the “normal” range is fairly wide for thyroid hormone levels. Some patients feel better at the top, middle, or bottom of the “normal” range. So just because your doctor says your levels are “normal”, that doesn’t mean those levels are *optimal* for you. It’s helpful if you can get copies of each set of labs and compare where you are on the lab tests with how you are feeling. Also, since you are still feeling symptomatic, it’s a good idea to push for Free T4 & T3 testing, in addition to just TSH.

It might also be worth getting a complete physical done with your general practitioner, just to rule out whether there might be something else going on.

Take care!

[missygail]

#1178547

I did have the physical and they confirmed with a FSH test that I am in early menopause! ( I am only 43):o:o So, I guess between the Graves and the menopause it’s no wonder I feel the way I do. She did do a free T3 & T4 but I haven’t requested the results, I will make sure to do that! Thanks!

[hartjourneys]

#1178548

Hi Missy,
I started with perimenopause at 37 and am now in menopause about 2 years at 54. I wish I could remember when I first tested positive for Graves antibodies but it’s been within the last two years. I find it very difficult at times to tease out which symptoms are Graves and which are menopause. I tell all my younger friends to get their hormones tested before 35 to set some kind of baseline.

I had a full endocrine meltdown at 47 brought on by stress I believe (marriage :o). I was lucky to find a doctor (internist) who works mostly from a naturopathic perspective. I’ve found a lot of relief with supplements, bio-identical hormone replacement, cutting allergy causing foods (wheat) and better sleep (CPAP). Try these books – The Mood Cure by Julia Ross and The Wisdom of Menopause by Dr. Christiane Northrup.

Now that I’m in menopause and those symptoms seem to be winding down I hope to get a better grasp on the Graves situation. It’s a journey for sure. Things keep changing. I’ve been very down and hopeless at times. In one day on this forum I feel better and more informed. Keep sharing.

Beth

[gumdrop]

#1178549

Hi beauty,

I’m really grateful to you for posting this. I’m going through a really hard time right now. I was diagnosed with Graves’ in 2001 and had my thyroid removed surgically. Since then I’ve been on Levothyroxin. In May I began noticing symptoms I associated with hyperthyroidism: moodiness, extreme irritation, uncontrollable rage when I did get angry, “hot flashes”, heart palpitations and heart racing, lots of trouble sleeping. Normally I exercise a lot and was noticing I was feeling weak and didn’t feel up to exercising as much. I was afraid I was getting depressed, but I couldn’t figure out how depression could move that fast. So, in addition to the other symptoms, I figured it was high time to get my thyroid levels checked.

I’m ashamed to say I never did find a specialist I liked and have just been letting my GP check my levels. She only checked TSH and at the time I didn’t think that was so bad. When I called to check, they told me I should decrease my meds. I did, but ended up “crashing”. Within a week of decreasing from 125 mcg to 100 mcg, I was exhausted and my muscles were very weak. I couldn’t even sit up at my desk for longer than an hour at a time. My stomach and back muscles would get really tired and sore and I’d have to lie down.

Since then, I’ve improved but very slowly. I still have to pace myself and cannot do any “real” exercise (nothing really strenuous, the way I did before). I’ve had a lot of probs with muscle pain, some muscle cramping, and twitching. Needless to say, my GP said flat out that it had nothing to do with my thyroid meds. I insisted on seeing an endocrinologist but he, too, said it didn’t sound like thyroid symptoms!

My TSH was (and had been all along) in the “normal” range, but at the very low end. Turns out my FT3 was noticeably low, but the endo didn’t note that this was not ok.

My TSH is still low, my FT3 is now almost in the “normal” range, though still low. FT4 is slightly below mid-range.

I have no idea what’s going on with me, but I’m 100% positive it has to do with my thyroid levels. My GP also wanted to send me to a psychiatrist. I’m very frustrated b/c no one listens to me and they all act like I’m crazy. Meanwhile, I am starting to get pretty down (not yet depressed) just because I can no longer do the things I love to do!

If you have any thoughts on my predicament I’d appreciate it. Meanwhile, thanks for sharing your story. I know what it feels like to have doctors think you’ve just got psychological problems when really, they just have no idea.

Gumdrop

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