New diagnosis of Hyperthyroidism - but feeling ok??

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Hi all

At the start of Jan I had what I self-diagnosed as the flu (same symptoms as everyone around me) which lasted for a couple of weeks, followed by feeling very tired, achey muscles etc - that i thought were just flu symptoms hanging around. I had a bad cough which resulted in a very sore neck - at first I thought I'd sprained my neck from the coughing, but went to see the doctor who had a feel and diagnosed Thyroiditis and prescribed anti-biotics to help the cough. Almost immediately I started feeling loads better, cough pretty much stopped, neck felt fine and I felt finally back to myself.

He had sent me for a blood test that I almost didn't have as I was feeling fine again. However I went last week and the results have just come back showing that I've got an overactive thyroid!! I haven't really got any of the symptoms now - sleeping fine, no palpitations, no cold/heat issues, no anxiety/depression issues. The only thing I had noticed were that I'd lost weight and my muscles were a bit shaky, but I've been training for the London Marathon so put this down to that.

Now my doctor is advising me not to do the marathon :o( put me on 10mg Carboximole per day and referred me for more tests at the hospital.

I'm just so shocked - I was convinced everything would come back fine, and now I've been reading online about Graves disease and it's really scaring me!

My appointment isn't for another 2 weeks - just not sure what to do. My anxiety has definitely gone up since the diagonisis - or maybe since I've started Carboximole - but it wasn't something I'd noticed beforehand as being an issue.

Any advice or other's experiences with something similar greatly appreciated.

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11 Replies

  • Posted

    Did your doctor check just the TSH or Free T4 and T3 either free or total? Did you get copies of the results? If so, post them here and maybe we can help you understand them.

    Personally, I think it would be entirely wrong to be tested for the thyroid when you have been sick recently, and I would want a retest before being put on anti thyroid drugs. If they don't bother you, that might be ok, though.

    When is the London Marathon?

    The anxiety could be due to the stress of having the diagnosis, or of disappointment at potentially missing the marathon, or of either the Graves' or the treatment. It is really hard to say.

    Is your diet well-balanced and with adequate calories to support your marathon training? If not, that could also be stressful or possibly even cause the TSH levels to be off.

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  • Posted

    Hi Fern

    My doctor didn't really say anything about the test results other than it showed overactive thyroid. He's put me straight on 10mg Carbimozole per day.

    After spending the entire weekend Googling and worrying about symptoms, I tried ringing the surgery today to get some better explanation of the results only to be told the doctor "doesnt take calls on a Monday" - great!

    My diet is very good - loads of vegetables, meat, fish, dairy - I'm one of those people who likes all food!

    I've always been fit and healthy so this has come as a massive shock to say the least :o(

    Re: the anxiety - yes, it's only been noticeable after my diagnosis although I have had some anxiety issues in the past (stressful jobs, exam worry etc) - but then again who hasn't!

    The London Marathon is in 6 weeks... I am frantically ringing Bupa to try and get seen before my 2 weeks NHS appointment.

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  • Posted

    I'm in the US, but here we can usually request a paper copy of our lab results, if we sign a form at the office and it isn't necessary to speak to the doctor to do it.

    Also, usually, the doctor refers us to an Endocrinologist rather than treat the Graves' Disease (GD) himself.

    Usually they run the TSH test first, then run the FT4, and possibly the FT3 if the TSH is low (hyperthyroid.)

    The Endocrinologists often prefer the total T3 instead of the FT3, saying that test is unreliable. They often also run antibody tests because GD is an autoimmune disease. TSI is the immune system equivalent of TSH but has no known shutdown trigger when it gets too high. Anti TPO and thyroglobulin antibodies pertain to autoimmune hypothyroid (Hashimoto's Thyroiditis, aka HT). TRab is the TSH Receptor antibody test which shows autoimmune involvement, but I don't really understand it much.

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  • Posted

    If it were me, I would first ask myself if the medicine makes me feel better, worse, or about the same. If worse, I would at least decrease the dose until I felt better, or until getting my own copy of the lab reports, and/or, the proper tests, and seeing the endocrinologist, etc. If it makes you feel better, stay on the medication.
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  • Posted

    Hey Good Samaratian

    What's NSU? I Googled but it kept coming up with Non-Specific Utheritis, a sexually transmitted disease in males. I don't think that's what I've got! ;o)

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  • Posted

    Oh and just a quick follow up -

    I saw the Endo yesterday who was really nice and helpful. He done the physical tests on me & checked my throat and thyroid. He said he thinks what I've got/had is Thyroiditis caused by the flu at the start of the year. Done a massive sigh of relief when he said that!!! he said my symptoms don't seem like someone with Graves (I haven't really got any symptoms other than tired/shaky legs).

    However he's sent me for more tests to rule it out completely so fingers crossed these come back negative.

    One of the tests is the RAIU test - can anyone confirm to me exactly what that is? Is it safe?! He described it as swallowing a "tiny amount of nuclear fluid" - that doesn't sound too good!!

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  • Posted

    I know some people on another support group site claim the RAIU test can cause Graves' Disease (GD) or make you hyperthyroid if you weren't already. Why didn't he just get you another blood test and test for antibodies? I had the RAIU test before being definitively diagnosed with GD and I felt great, (maybe too great).

    Did he take you off the anti-thyroid medicine in the meantime? or lower your dosage?

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  • Posted

    He did send me for another blood test to measure antibodies and the thyroid levels again. I expressed reluctance at taking the RAIU test - I just don't like the idea of swallowing radiation! Especially when I'm feeling ok - I mean, I can definitely tell I'm not 100% just because my muscles are knackered, but I'm feeling fine otherwise.

    He took me off Carbimazole too which I was pleased with. I'm really really hoping and praying my next blood test comes back with more normal thyroid function!

    Do you know if the antibodies result will rule out Graves? He seemed to think that I'd need the RAIU to defiitely confirm whether I had it or not...

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  • Posted

    Again, "they" say that the RAIU is an old fashioned test, not used much anymore. I am no doctor, though, so what do I know? (and "they" aren't on the doctoring end of the site, either.) I think the general reluctance to taking this test is the iodine itself rather than the radiation.

    I had a different test many years before, where I swallowed a radiation pill to see the pathways of my fallopian tubes when I was having many repeat miscarriages, then seeming infertility. That seemed innocuous. After the GD dx, with my eyes being affected by the GD, I first had scans on the eye muscles. The first one was "with contrast" ie radiation pill and the second was "without contrast" because -- if I understand correctly -- it was no longer recommended for someone with GD.

    I don't know for sure if no antibodies would necessarily mean no GD, but I think you have the right to refuse this test until you are more confident about the necessity of it.

    Did you have the new blood test already? Be sure and post the results.

    Skeletal muscular weakness is associated with both hyper and hypo thyroid conditions as well as some other things, like the rare genetic condition I think might be plaguing me: Primary Carnitine Deficiency. I haven't even talked to my regular doctor about this, yet; I just have results of a DNA test that seems to show something suspicious within that gene -- the SLC22A5 carnetine transporter gene.

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  • Posted

    Hi Beck

    I understand this had been awhile now what has happened?

    I am just in the same boat that you were in three years ago. Not sure what to do I feel fine.

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    • Posted

      Hi Emma, I have just been told that my thyroid has been fine for 3 years now without medication so I don't need to see the endocrinologist for at least a year, just have my regular doctor run the thyroid tests once a year, and only see the endo if my test results are off again.

      I believe that the things that keep me under control are: Acetyl-L-Carnitine, Methyl B12, Methyl folate, one or two Brasil nuts daily, a calcium-magnesium-zinc tablet with over 100% of the daily requirement for zinc, Strawberry Quik which has added manganese which is a micronutrient, and Wellbutrin [by prescription only.] You may want to talk to your doctor about these, although most of them are available at a health foods store.

      The anti-thyroid drug was very bad for me, but only my husband and I could see it was a problem. My endo acccepted the fact that I had done the right thing after I had eased myself off the drug without his permission. I had decreased my own meds by 0.5 of a 5 mg pill per week each time I had found out the results of the previous test. ie, if I was on 35 mg per week I went to 32.5 mg per week until the next blood test.  since I always had better test results when I did this, my endo approved it after the fact.

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