Has anyone had Graves Disease which later became hypothyroidism?

[sasha367]

Well, this is the very first time I have ever posted a question/comment on an internet site, but I am so thrilled to have found this site.  I thought I may have been imagining things, but now realize I am not alone in my experience of disturbing symptoms!!!  I had Graves Disease in my mid 20s and went untreated for about ten years (long story), until it "burned itself out!" I was euthyroid (normal) for many years until a few years ago (in my 50s now) and was told I am now hypothyroid, despite the fact that my T3 and T4s are always normal. (My antibodies are through the roof!)..so.....
I was taking synthyroid for years and doing fine (although still can't lose weight)......and then, I was given levothyrooxin......IT HAS BEEN A NIGHTMARE!!!  I developed terrible symptoms, but was told it had nothing to do with the med, just coincidental......I remember the symptoms started soon after the switch to the levothyroxin, and after reading some of the posts here, now believe I may have been right.  I developed terrible bone pain, particularly in my shins, waking me up every night, in both legs and intermittent all day long every day.  Then, I developed pain in wrists and arms, and was told its probably carpel tunnel.....I was very athletic, dancing, working out in the gym 4-5 days a week, treadmill, weight training etc, and approx 6 months ago, STOPPED ALL ACTIVITY, for fear of exacerbating my leg pain. I have put on 20 lbs despite eating under 800 calories a day!!  I feel "twitchy" a lot of the time, in my eyes.  Anyway, after reading some of these posts, I realize that maybe I am also allergic to the fillers in this medication. I am also an asthmatic and do have many alleriges. (recently had an anaphalecctic reaction to sunflower seeds!)  I am going to skip my levothyroxin today and talk to the doctor about switching back to synthyroid, to see if this is true or in my mind!!!  It has gotten so bad, that I have become VERY ANXIOUS and DEPRESSED, feeling like I am 100 yrs old!!!  Your support is so appreciated!!!

[gimel]

Most people do not have/ will not take time for a hour or two workout 5 days a week.   So the answer for them is to find a good thyroid doctor that will treat clinically, by testing and adjusting Free T4 and Free T3 as necessary to relieve hypothyroid symptoms, without being influenced by resultant TSH levels.  I admit those doctors are hard to find, since most doctors have the "Immaculate TSH Belief" and diagnose and treat based on primarily TSH, which is wrong.  If they go beyond TSH they tend to use "Reference Range Endocrinology", by which they will say that a thyroid test that falls anywhere within the range means you don't have a thyroid problem.   That is also wrong.  

So, yes your workout regimen can overcome the residual effect of low metabolism due to inadequate treatment and the exercise is beneficial to your energy and outlook.  However, if you remain hypothyroid due to inadequate treatment, then there are other symptoms that would remain.  In addition, inadequately treated hypothyroidism will cause other, more serious problems if left untreated for an extended period.  

So, what other symptoms do you have?  What are your thyroid related test results and reference ranges shown on the lab report?  What are your Vitamin D, B12 and ferritin levels?  If your prefer not to discuss all this with us, then at least read at least the first two pages of the following link, and more if you want to get into the discussion and scientific evidence for all that is suggested in the paper.

http://www.thyroiduk.org.uk/tuk/TUK_PDFs/diagnosis_and_treatment_of_hypothyroidism_issue_1.pdf

[sasha367]

Just thought I would give you an update.....
Since stopping both the Levo and Advair.....I am feeling SO MUCH BETTER!!!  The leg pains/throbbing that I was suffering with for months has severely diminished....only a little pain at night while sleeping, during the day, pain free.....The eye twitching, irritability, and generalized anxiety is GONE!!!  I have decided that I would rather suffer the risk of being hypothyroid than feel as SICK as I had......I suspect that the levo was causing the leg pain and the Advair was causing the neurological symptoms, ie eye twitching, anxiety, and irritability.  In any event, I am starting to feel more like myself now......I may consider eventually going back on the synthyroid , but for now I am just enjoying being pain free!!!!

[Gail82]

Hi there I myself have suffered from the same symptoms as u.I found out i as well was allergic to the medications. I was diagnosed with Graves disease at age 14. I would spend every month in an out of the hospital for years. It was so terrible an my depression became so very horrible. My husband went to school for sports med. An in my late 20s came up with a wonderful training program for me, working out 5 days a week just an hour or two every workout. An less sugar an bread. I only drink no sugar drinks but it's been well worth it. Most listen to there drs. An continue with the meds only to gain weight  with age an become more sick or develops other problems but my self by changing just those simple things now at age 35 I have never felt better in my life. My method may not be for everyone but I just felt a need to share my story with you. Good luck with your health. ¤

[Barb135]

Since it takes several weeks for athyriod  med change to be effective,  because it has to build in your system, the way you feel now, would be attributed to medication you took a a while back, not just because you stopped the levo yesterday.

Going a few days without your thyroid medication is not advisable, as you will only become hypo again.  There's no reason you can't switch directly back to synthroid, if your doctor will allow it.  

[sasha367]

Thank you so much for taking the time to respond to my post......Your request for the lab values made me realize that I have not been really proactive and as involved in my care as I should be, as I have never asked for the actual values.......shame on me!!  Anyway, interestingly, I stopped taking my Advair diskus over the last couple of days, my asthma has been stable, and I have been feeling much better, including some relief from the bone pain I was experiencing and the eye twitching has stopped!!!!!  My mind seems clearer, too, like less foggy.  I also decided to stop the levothyroxin yesterday, and the only thing I am taking is my blood pressure med.  I AM FEELING SO MUCH BETTER!!!!  I think I have to go with my gut instincts......I am going to try to go a few days without the meds.....and then I am going to resume my Synthyroid 75 that I was taking before the l.00 levothyroxin, and I will see a new asthma specialist to see if I can stay off the steroid inhalers........I have been on them for years........  I will keep you posted. but I am feeling more hopeful now, much less anxious and irritable (which I think was part side effects of meds and part just feeling generally horrible)  Thanks again for your support.

[Barb135]

Everyone becomes hypo when the thyroid stops working, because vital hormones produced by the thyroid are no longer available.  

The symptoms you listed are those of one who is hypo.  It appears that you may need an adjustment in your thyroid medication.  It would be most helpful if you would post your actual thyroid hormone levels, along with reference ranges, since ranges vary from lab to lab.  Also please list your antibody levels, as well as which antibodies are high.  

Often a person may still be hypo, even though FT3 and FT4 are in the "normal" range.  It's very possible that the levels just aren't high enough for you.  Many of us find that we aren't comfortable until FT4 is at least mid range and FT3 is in the upper 1/3 of its range.  

Some people have a problem with fillers/binders in some medications and different manufacturers use different ones, so you could have a problem with that; however, as I stated, your symptoms certainly indicate that you are still hypo.