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hi I had a total thyroidectomy two weeks ago. I felt great for the first three days but then I started experiencing fatigue, and dizziness. By the 5th day I had a strange reaction to what I think was the thyroxine, I started to go really reall dizzy, red, hot to touch and then came out in hives. Since then the doctor has taken me off thyroxine, it's been a week and I feel worse then ever! I've started to experience weeping which is not me and the worse thing my ankles and other body parts have been swelling to the point were it is antagonising to move the joints. I tried to discuss this with my new endo who has basically giving me the cold shoulder. He took some blood test and apparently my tsh is suppressed so I don't need any thyroxine for the next three weeks, I feel confused and angry at the lack of empathy and information he has given me, has anyone else experienced these type of symptoms after thyroidectomy. Thanks in advance 

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  • Posted

    Dear Jessica:

    Hello my name is Shelly and I am an RN -Nurse and I live in the USA.  I suffer with Hashimoto's thyroid disease.

    I am sorry you had a partial throidectomy.  Our thyroid gland is a very important gland and it sadly is does not grow back.

    If you had the hives after taking LEVOTHROXINE, (itself or what fillers are in the tablet) you had an allergic reaction!   It can happen to some of us and the redness also is due to that reaction. Please make sure you tell all doctors that and have your medical file tagged as an allergic reaction. There is a serious reaction called anaphylaxsis which causes swelling of the throat, redness in face or chest, hives or little bumps that itch, and swelling of limbs.  If that happens go to the nearest Emergency Room.

    There are other thryorid brands for replacement on the market.  Some are:

    Brand names:  Armour Thyroid, Thyrolar, and Cytomel.

    Now, as to your symptoms:   Weeping, crying or feeling blue is common in low thyroid symptoms.  Your body had a thyroid level prior to surgery and when the gland was partially removed you produce less of the hormone.

    Common symptoms of a low thyroid or HYPOTHYROIDSIM, are

    Feeling tired/fatigue

    Feeling Blue, depressed, and sometimes anxiety

    Weight gain, despite eating low calories

    No period or heavy ones

    Muscle aches/ pains in joints

    Headaches, brain fog, and unable to do a task.

    Dry skin

    There are more but these are the most common ones.  As your thyroid tries to keep up with the bodies needs, and it may not be able to, you will experience these symptoms. 

    Please keep a log of your symptoms and tell the doctor or your Endo, all and ask for another brand of thyroid medication.  It sounds like you have low thyroid as you recover from the operation. 

    It may take time to see if your body can compensate with the other part of the thyroid that is there. Sometimes the body can compensate and it takes a bit of time to heal and settle down.

    I am sorry that you have this and many of the people on this forum have had what you have, or we suffer with a non-working thyroid, or a low working one. We are here for you and feel free to ask any questions you have.  Be well and I hope I helped you.  XO Shelly

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  • Posted

    My heart goes out to you as physicians have no clue how a lack of a thyroid effects your entire body. Removing a thyroid is a huge deal but they come off as if it isnt!  A thyroid is the gland that controls everything from temperature, metabolism, hair , skin, etc.   I basically couldnt walk after my surgery as it effected muscles and tendons.  Hang in there!  You will have to try many doses of thyroid meds until you get the right one that suits you.   I suggest doing the research as there are a few types of thyroid meds.  Natural, Synthroid or cytomel etc   Some people react differently to t4 verses t3.   Get informed!  If you feel your doctor  isnt helping you....dump him/her.  Find one that will listen to you.  I understand your tsh is suppressed but demand to be tested on a weekly basis.   3 weeks seems quite long...and of course the doctor isnt going through your agony so it is typical for them to not fully understand the extent of your physical and mental state.    Hang in there Jessica, it will get better in time.  
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  • Posted

    Thanks you for your replies it reassuring that there is people out there that understand what I'm going through. I called my doctors straight away for further explanation and to request a transfer back to my old endo, but I'm still waiting for a phone call. The pains still keep creeping up on me especially towards the evenings and it's mainly in my ankles and calfs, the pain is like I've done a marathon or something which I clearly haven't as most days are an effort. Is it normal after a TT to not have any replacement thyroxine for this long?
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    • Posted

      Hello Jessica:

      Also make sure your Vit D level in your body is okay.  Have the Endo doc order it. Many people who have thyroid problems tend to have low Vit D levels.  When it is low many people experince leg and calf pain and general muscle pain.  A good Multi-Vitamin can help.  A mineral panel is, potassium, sodium, magnesium and iron, and it is done by a blood test.  You need to have proper levels of minerals in your body so get that checked.

      I would say, some doctors try to wait and see if your remaining thyroid would compensate but you need to explain your symptoms and say I need replacement hormone meds.

      You know you feel unwell, so  tell the doctor that and  bring a log of all  of the symptoms you told us to your Endo appt.  Once you get on medication to replace the hormone you should feel much better.

      I hope this helps.  Shelly

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    • Posted

      Hi Shelley, yeah that really helps, I've just spoke to my GP today and she wants to send me for another blood test next week then discuss results and symptoms properly then. As for the vitamin levels I don't know I've never been tested, so I will request that too. Say if they do come back normal will it cause harm just to take the additional supplement anyway? 


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    • Posted

      Dear Jessica:

      You can wait  and see what the VIt D level comes back,  it takes about a week for that test to come back.  Or you could take the Multi-vitamin with Vit. D in it and see if the symptoms improve.  

      As we age, we don't make enough Vit D from sunlight anymore and we also do not get enough from diet.  So it can cause terrible pains in the muscles if low.

      Also as I said some of it can be from your thyroid problem.  It can't hurt to make sure you minerals and Vit D levels are in good order.

      I am glad you will have blood work done soon. Be well, Shelly

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  • Posted

    Hi there I just thought I'd share an update, strangely enough the joint and muscle pains have disappeared, not complaining it's just odd. After nearly 3 weeks without my meds I've finally gone hypo slightly, my tsh was 0.3 which finally gave the docs the push the needed to find me alternative medication. Levothyroxine sodium oral solution, have you tried this? Today is day one of taking it so hopefully I'll see an improvement.


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    • Posted

      Hello  Jessica:

      Well that is good news that you can start Levo.  It will take 6-8 weeks to build a proper level.  You should take LEVO an hour before food.  Also if you are taking any supplements - take that at a different time and with food.  I think you should see improvement, so keep us posted on how you are doing. 

      Be well, Shelly

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