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Is this a burn out phase

Posted , 6 users are following.

jeanette25032
jeanette25032

I have now been sick for 7 years and have been on propylthiouracil for 4 years. My symptoms remained bad throughout but now they have altered slightly. I always got body pain, anxiety breathlessness, etc. But now i feel like i have been beaten and bruised. My bp is a little low and i feel a bit woozy. Also very tearful. allergies to perfumes and chemicals through the roof. Chest and palms bright red and i feel so miserable. My left eye has also been mildly twitching non stop for 2 weeks and is making my vvision feel weird.

My thyroid results seem ok TSH 1.3 but my FT3 has gone from 5.8 to 4. Is this the burn out phase kicking in? One minute i boiling hot then freezing cold. How l9ng will this go on for before this thing dies off.

My liver kidneys and ovaries are cystic, I am making lyme antibodies, vasculitis is borderline. Doctors can'tseem to agree wwhat's wrong but maybe my thyroid is causing all this weirdness. I have paid thousands and thousands over the last 7 years and regardless of the PTU I have felt chronic for the entire time. Now thing are getting worse. I feel like I'm dying and doctors just shrug and say that my thyroid wouldn't make me feel this way so I must have an underlying problem. I show them my lyme results and they shrug and say do another lyme test mi aybe it's a lab error. I get weird porphyrin readings and they say maybe it's a lab error. if we remove your thyroidthere's a 5% chance you will feel better.

has anyone else been through weird test results with hyperthyroidism

1 like, 11 replies

11 Replies

  • renee48912
    renee48912 jeanette25032

    Posted

    Sometimes I think it is the medicine that makes us feel worse not better! I'm on PTU now and I have aches and pains I shouldn't be having! I'm going to go back to my Dr after vacation and talk thru things again! I do believe they don't know what they are doing all the time, it's sad because they are suppose to make us feel better!

    Good luck

  • linda187
    linda187 jeanette25032

    Posted

    Jeanette you sound like you have more medical issues than thryoid disease.  You possibly could have Lyme disease or some other diseases.  I know where I live in Canada that the College of Physicians took a physician to the Discipline committee because he was diagnosing his patients with Lyme when it hadn't been heard of in Canada.  It turned out he was correct so I don't think most physicians know enough about Lyme and other conditions to help you.  I was on methimazole (known as Carbimazole in the UK) and when I added supplements like Vitamin D and Acetyl-L-Carnitine my Graves disease improved a lot.  Found out today from another Board that a lot of us autoimmune thyroid patients have skin conditions like eczema because of our immune systems.  I think you have taken a step in the right direction and you need to keep researching.  Keep us posted on your progress.
    • jeanette25032
      jeanette25032 linda187

      Posted

      Hi Linda

      I have had all the autoimmune tests and everything is normal. Docs say they haven't seen a case like mine before as it's multi nodular thyroiditis that doesn't uptake and hyperthyroid. I was healthy until I began getting allergies 7 years back and was given a shot of corticosteroids. Within 15 minutes all hell broke loose and i never recoverred. I can't work or drive as my vision seems off and get panic attacks. I feel so ill. My USA lyme test was positive but UK won't accept tests from USA. My UK lyme test was negative and my French one showed p39 antigens which are specific to lyme. I live in the Middle east and from 88 to 96 i was a stewardess flying all over the world. I did suffer from vertigo from 97 to 08 but otherwise health was ok.

      should i get a thyroidectomy to see if it helps as my thyroid has nodules anyway.

    • linda187
      linda187 jeanette25032

      Posted

      Someone on another Board wrote yesterday about mast cells and eczema because a lot of us have itchy ears or other skin conditions.  I will see if I can find that post for more information.  Your history of positive Lyme tests is similar to what the Canadian doc was finding in his patients.  I think a similar thing happened here as you experienced.  I think removing your thyroid is not going to address the problem of your immune system.  Have you seen an Immunologist?
    • renee48912
      renee48912 linda187

      Posted

      Hi Linda, not sure if I could just jump in here and ask a question but I just did new blood work and have my results TSH .19 range .40-4.50 so very low and Free T4 .9 range .8-1.8 and free T3 3.2 range 2.3-4.2, I have been taking Acetyl -L Cartinine 1000 mg a day and L cartinine 500 a day, I was on PTU 50 mg twice a day and today she told me to lower it to 50 mg once a day! My question is , do you think I should up the dose of either one of those aminos? I'm also taking vit D I was deficient in and now I'm in range but my glucose is up and my heart rhythm is off so seeing a cardiologist tomorrow and made an app for the Mayo clinic to try and get things in better wraps! Still losing tons of hair and they can't figure out why! Anyway after all that just wanted to know about those aminos or anything else to add to the mix! Thank you

      Renee

    • linda187
      linda187 renee48912

      Posted

      Renee what was your previous TSH value?  Also how are you feeling since adding the carnitines?  I think you haven't been on the carnitines long enough to get the results you want.  I have read recently that hair loss in thyroid patients is due to a lack of Zinc.  I would give the carnitines another couple of weeks on the current dose and check for symptoms.  For myself, I did not need to take a dose higher than 1,000 of the Acetyl.  I did take 3,000 of regular L-Carnitine at one point but it did not have as strong an effect on my TSH as the Acetyl did and I did not have to take a high dose of antithyroid meds when the carnitines were combined with it.  You may need to take a beta blocker like Propranolol perhaps in a very low dose for the heart rhythm but this you will have to ask your doc about.  He or she won't know much about the carnitines but the Propranolol is within their realm.
    • renee48912
      renee48912 linda187

      Posted

      My previous TSH was .02 but there was no range written with that one. So I guess I did go up some but still low at .19! She lowered my PTU to 50 mg once a day and that kind of worries me that my thyroid will shoot back up, I'm hoping that's not my case. Seeing the cardiologists today so I will find out some answers there I'm hoping! Maybe the Acetyl aminos did help some already since it did change , let's hope so, I hate being on this medicine, so many bad side effects!

      Renee

    • linda187
      linda187 renee48912

      Posted

      I think the values went in the right direction which is a good sign and it does take time when your TSH has been so low for so long.  Please post again and let us know what your cardiologist says.  I would hold off on the dose change on the carnitines until you have the Cardiology evaluation or you experience symptoms due to the cut in dosage of meds.  I think your doc reducing your meds is good as well because even if the values go a little higher, you have a bit of room in the range to play with, your FT4 was at the bottom of the normal range so it would rise to the middle or closer to the top of the normal range which is desirable. 
    • renee48912
      renee48912 linda187

      Posted

      Ok thank you Linda! I live in Florida so our time is different then yours I beleive but my app is at 4 today! I will keep you posted!

      Thanks Renee

    • renee48912
      renee48912

      Posted

      My cardiologists out me on a beta blocker because he said my heart rate was off during exercise and didn't want me to have a problem , so I went to the health food store today and asked them if hey had a natural beta blocker so I didn't get side effects from that and beleive it or not Magnesiun is a natural beta blocker! I'm going to take it instead for 3 weeks and when I go back to my cardiologist I'm going to see if I have improved! I told him I wasn't going to take the beta blocker because of their side effects and he said it was I'm my good interest to take it! Let's see if the Magnesiun will do the same job! I was so spaced out last night taking the real beta blocker and when I hit the pillow I was out completely for the night! I'll keep you posted !
  • fern12
    fern12 jeanette25032

    Posted

    The TSH test result looks about mid-normal, but I can't tell about your FT3.  Could you post what the normal range is for that in your lab?

    Lyme disease can affect the thyroid testing, at least the TSH.

    It seems to me that you are being over medicated with the PTU.

    Twitching can be caused by low magnesium.  I would take some every evening and the twitching subsided.  Low calcium or low Potassium could also be a problem, but it may be best, particularly for Potassium, if you get it from food.  Bananas are rich in potassium, but so is Orange Juice, or other fruits.  Potatoes are also high in potassium. If you consume milk and dairy and if you get a banana or orange juice daily, you could try the magnesium pills.  Sufficient Magnesium is harder to get from diet, but be careful not to overdose, either.

    Having a 5% chance of feeling better with thyroid removal isn't enough to take the risks, in my opinion, and it is not reversable.

    I have followed Linda's advice about the Acetyl-L-Carnetine and it has helped me, too.  My doctor had me take prescription vitamin D when a blood test showed I was low.

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