New to hyperthyroidism

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Hi all,

 I’m very new to this so please excuse me for any stupid questions as I know everyone’s different and reacts differently.

Got diagnosed with hyperthyroidism June 6th.

Blood test says Free T4 is 64.9, T3 is 24.5, TSH is 0.01.

Is that bad compared to average hyperthyroidism diagnosis or what can I expect? 

I’m signed off work at the moment for last 3weeka as legs are weak and job involves climbing ladders but hoping another week off should do it. Is this normal to be off so long as never missed more than 3 days?

i’m on beta blockers and 30mg of thyroid blockers a day.

i’ve been referred to an endocrinologist but due to Irish healthcare there’s a 12 month wait.

Thanks in advance for any input or information. 

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10 Replies

  • Posted

    Hi DaveM80, I had hyperthyroidism in 2015 and had similar values (provided that the units used for FT4 and FT3 are pmol/L). The normal upper limit for FT4 is 20pmol/L. For me, the worst part was the muscle pain as hyperthyroid patients can have muscle wasting. Initially, I could hardly go upstairs or stand up from a crouched position. 

    I was also given 30mg Carbimazole.

    This is my advice: 

    1) Rest as much as possible. Exercising or heavy work will make your muscle pain much worse. 

    2) Eat healthy food and plenty of proteins. Your metabolism is on high gear and you will likely need more food than usual. Monitor your weight and avoid losing too much weight. 

    3) Your thyroid levels are likely to come down in a few weeks. Carbimazole blocks an enzyme that the thyroid needs to produce thyroxine. Your Carbimazole dose might need to be adjusted and you will need regular blood testing. 

    4) Do your blood tests include things like Thyroid peroxidase antibody level or TSH receptor antibody level? These can give a clue if your thyroid disorder is of autoimmune nature or not. 

    5) If you smoke then I would strongly advise you to consider stopping. The treatment outcome is much better for non-smokers. 

    Good luck, and don't hesitate to ask if you have more questions. 

     

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    • Posted

      Hi danR

      Thanks so much for the reply that’s great advise.

      I’m similar with the struggle climbing stairs and getting up from crouched positions which is made hard with a 20 month old boy running around.

      Some days I feel like I’m getting better, than the next day it’s a stabbing pain in the foot. Next day I’m exhausted but no pains it just seems so random. 

      As I said the most work I’ve missed before now was 3 days but now I’m on 3weeks.

      Im thinking I’ll give it next week and try going back.

      I had thyroid antibodies test and it reads >

      thyroglobulin 0.3(L) ng/ml

      anti thyroidglobulin 150(H) IU/ml

      Is that the antibody test?

      Doc just told me to bring it with me to hospital when I get appointment.

      Thanks again for your help.

       

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    • Posted

      Hi DaveM80, thyroglobulin (Tg)  is a large molecule produced and stored in the thyroid. It is further used within the thyroid to produce the hormones T3 and T4. Normal serum levels are less than 55ng/ml, so your level is fine. 

      Thyroglobulin Antibodies (TgAb) are proteins produced by the immune system and they target Tg. Normal levels of TgAb are less than 40 IU/ml (check with your lab, or see the reference ranges printed on your report).  Your TgAb level is high, an indication of some degree of thyroid inflammation.

      This antibody test is not very specific. It occurs in 30% of patients with Graves’ disease and in 85% of patients with Hashimoto’s thyroiditis and can also occur in patients with a thyroid adenoma (an overgrowth of thyroid tissue).

      It is slightly unusual that your GP chose this antibody test since the anti-thyroid peroxidase (anti TPO) level has higher sensitivity and equal specificity to TgAb. Does your thyroid appear swollen? 

       

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    • Posted

      Hi danR,

      Thanks for the info. 

      I checked my lab results and anti-thyroglobulin range is 0.00-150.00. It’s not very detailed but I’m guessing all the tests will be done when I get endocrinologist appointment.

      My thyroid doesn’t look swollen and if it wasn’t for the other symptoms I’d never guess it was related.

      Do you mind me asking how were you treated and are you cured?

      I noticed you said “had” hyperthyroidism. I thought it was a lifelong condition albeit manageable.

       

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    • Posted

      Hi DaveM80, further investigation showed that I had, in fact, Graves' disease or autoimmune hyperthyroidism. I had to take Carbimazole for a total of 18 months. I started off with 30 mg and was on 2.5 mg towards the end of treatment period. My endo kept monitoring my thyroid levels to see if my immune system 'calms down' and stops overstimulation my thyroid. After my levels were stable without medication I was discharged from the care of the hospital. 

      I was fine for more than a year but in January 2018 I became hyperthyroid again. Most Graves' patients relapse at some point but there is about a  30 -40 % chance of staying euthyroid (with normal thyroid values).

      This time around I was aware of the symptoms (palpitations, problems sleeping, feeling on edge, ...) and my values were not that bad (FT3 around 30 something). I again had to take Carbimazole but recovered fairly quickly. At the moment I am taking 5 mg Carbimazole. I have an appointment with the endo in September but in the meantime, I get the blood test forms sent by post from the hospital and then about a week later the endo writes me a letter with instructions (like medication dosage, and when to have the next blood test).

      Your thyroid problems might be caused by a different disorder. For example, patients with Hashimoto's thyroiditis are hyper in the initial state but often become hypothyroid as the disease progresses.

      It would be good if the cause of your hyperthyroidism could be detected before you see the endo. One year is a long time to wait for an appointment with a specialist.  

       

       

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    • Posted

      I meant to write: This time around I was aware of the symptoms (palpitations, problems sleeping, feeling on edge, ...) and my values were not that bad (FT4 around 30 something). 
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    • Posted

      It’s good that you’re able to spot it yourself and take action.

      i must have been ignoring little things for months but my main reason for booking blood tests was a pain and tingly sensation in my right foot which happened while driving on motorway. Once that happened I knew something wasn’t right.

      I’ve to go back to doctor for blood tests beginning of August to see if medication needs to be adjusted and I’ll ask him again if endocrinologist can be seen earlier.

      it would be good to know a cause for the thyroid problems but at the moment i have to trust the doctor to manage it. 

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  • Posted

    I agree with everything Dan said.  In my case, I became aware that I lost a lot of vitamins, minerals and amino acids when I was running hyperthyroid.  I started taking supplements when my TSH would not rise after two years of treatment.  I took these along with my meds.  Regular L-Carnitine, 1,000 to 3,000 mg per day, vitamin D3 gel caps 1,000 to 5,000 IU per day and Magnesium 200 mg per day.
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  • Posted

    Good Morning Dave,

    I am very sorry to hear that. Your thyroid levels are very high, you would need to see an endocrinologist ASAP. 12 months is too far far away, next week is too far away. The levels need to come down and you can only do that by taking medication. Please do not wait for the insurance, try and find some money to go see an endocrinologist asap. The beta blocker is just to slow down your heart rate. It was probably beating at 140/minute, when the usual is between 60-90 or 100. Please don't wait any longer.

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    • Posted

      Hi Caroline 

      Thanks so much for the reply.

      i was under the impression from doctor as he can manage it by the medicine he has prescribed and he will be doing more blood tests 8 weeks from when I started medication to see if adjustments are needed. 

      Im on anti thyroid meds as well as beta blockers.

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