Over medicated on thyroxine symptoms advice

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I had my thyroid removed in 2012 due to thyroid cancer. Also on calcium due to parathyroid damage. Have just had my thyroxine dose lowered to 125 daily because it was too high. Last dose change was around May last year.

Since July I have struggled with very bad anxiety: panic attacks daily, feeling sick, tight/constricted throat, irritable, tearful, loss of appetite which got so bad I started to get an aversion to food and felt like I would gag whenever I tried to eat (usually lasts between a day to a week but recurs frequently) Hair loss and tingling in hands which usually comes when having a panic attack but sometimes is so bad the tingles spread up my arms, my hands lock into one position, my face becomes so tingly i can't talk properly and the tingles spread to my stomach (calcium levels fine). Whenever my period comes I turn into an anxious, irritable, moody wreck (I know some may think this is normal but it's not on a normal scale, it can reach the point where I cannot leave the house due to anxiety and cannot deal with every day life)

I had blamed all of my symptoms on anxiety, assuming I was doing it to myself and finding it very frustrating that I couldn't beat it (I have struggled with anxiety before and had about two months of very mild anxiety before this started again, mild anxiety was bliss compared to this! But I never had anxiety/panic attacks before the cancer and medication)

Can anyone tell me if these symptoms could all be down to the thyroxine and that now my dose has been lowered it will gradually improve? I've reached a point where I cannot feel like this anymore and feel like I'm going mad.

Also regarding the tight throat, I had a routine ultrasound to check for cancer which was clear and had my latest oncology appointment and neck was examined thoroughly and was fine.

My dose has never settled since my diagnosis in 2012. I'm 23, not sure if it could be due to my age but my weight has never changed.

These are my latest bloods:

Calcium: 2.16

Adjusted Calcium: 2.24

TSH: 0.16 (L)

Free T3: 5.8

Free T4: 28.5 (H)

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11 Replies

  • Posted

    Have you ever had your Vitamin B12 levels checked in recent blood tests?

    A B12 Deficiency can often be found in people with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.

    I am not a medically qualified person but one who has suffered with Pernicious Anaemia (a form of B12 Deficiency) for 45 years.

    I hope you find some answers.

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    • Posted

      Hi, don't think I've been tested for them! But also have no history of those other conditions either. I'm under an endocrinologist so I might ask about that next time. Thank you!

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  • Posted

    Hi 2lbethH I am sorry to hear you have lot of problem, may I ask do you have all these problem before the removed of your thyroI'd gland, what type of symptoms do you have before the remove of your thyroid gland, aftervthe surgery how was daily activities I am new,to this board and I have thyroid nodule on my left side of my neck, I have twice fna biopsy and both came back imdef and suspicious , my tsh is high 394.5 and I have low on calcium,low on vitamin d, low on protien and low on albumin ,I am looking for anyone on this board for help thank you and take care

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    • Posted

      Hello! I have actually just replied to your other post, but one thing is that I have always been a worrier but never had anxiety before the removal of the thyroid. However I know many people who have had it removed and settled on a dose and are feeling normal!

      The surgery was fine, after a few hours I was a little sore and had to eat very soft food for about a week because I was swollen so had trouble swallowing. Unfortunately my vocal chords were damaged and I lost my voice for around six months, but again I've heard this is very rare I think I'm just unlucky!

      I never had any biopsies, I had an ultrasound and was told everything was fine but as the lump was very large and noticeable I opted to have it removed anyway, so then my diagnosis was a bit of a shock!

      It took about two weeks to feel back to normal but you may be tired and a bit slow with activities.

      The hardest part for me has been adjusting to the correct dose of thyroxine, as long as you know your own body and know how you should be feeling so that you can go to your doctor and say you need your bloods testing to check the dose is correct.

      I am terrible at knowing what bloods should be like so unfortunately I can't help with those, mine are usually a little different because my thyroxine has to be a bit higher to keep the thyroid cells from reforming!

      I would book an appointment with your doctor or call your hospital to talk through your concerns, there is nothing worse than sitting at home worrying about it, hopefully they will chat through what's happening and give you all the details about surgery etc to help you make up your mind. Looking back even if it hadn't been cancer I would have had the lump removed because the other half of my thyroid continued to work fine before they had to remove it due to the risk.

      I hope this helps, so sorry about what's happening to you, I really hope they can get it all sorted and put your mind at rest!

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  • Posted

    Hi LBethH

    I'm not sure if I can give much advice, but like you I had my thyroid removed 2 years ago and they have not been able to stabilise the thyroxine dose. My symptoms are similar to yours.  My T4's at the last blood test were 22, which is the top of the average range, but as I am having stress and anxiety attacks, lack of sleep etc etc, my doctor has just increased my dose to  100 as all of the symptom are those of hypothyroidism and not hyperthyroid.  My dose started at 100 and went all the way down to 25, because the tingly skin, is the same as being hyperthyroid (having been both hyper and now hypo, I know the symptoms). The other reason the Dr increased the dose was because my TSH was  low and he thinks that to get the balance in people without a thyroid it should be about 2.0.

    I've recently been to the hospital endocronologist as the GP's are now not able to do T3 tests as they are too expensive, she has done the T3, also a D3 and Selenium test, which I am awaiting the results of, she said that they did some research at one of the hospitals and a lack of selenium hinders the conversion of the thyroxine into the body, perhaps you could ask for a selenium test.

    I'm sorry that you are having such a bad time especially as you are so young, it isn't fair. 

     

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    • Posted

      Thanks for your reply! Sorry you're going through it too, seems never ending doesn't it! I'll definitely ask about that test, they seem happy to bounce me between the same doses at the moment but I think I may need 125 five or six times a week and then a 150 thrown in once a week, but I'm not sure, just got to hope they can get there!

      I hope your next blood results lead to a better dose for you!

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  • Posted

    Your calcium looks as if it is high normal but I'm not a doctor.  If it was me I'd have my parathyroid hormone and Vitamin D levels checked just to rule out hyperparathyroidism.  If your doctor won't carry out the tests you'll have to get them done privately at a clinic.  My guess is that you should be prepared to pay somewhere in the region of £150 for the two tests but it is a guess.  It's only by a process of eleimination that you'll find out what's wrong with you.  Best wishes and keep plugging on - you'll get there in the end.  There are a lot of people on this site who will be rooting for you.  Alan.

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  • Posted

    Hi LbethH I hope you feeling OK now after 4 years ago with surgery, can you please share with me and other people on this board about how was your surgery go and how was recovery after surgery and any symptom right after surgery, and medication, I am sorry to ask you this ,I am about to have sergery to remove my left side thyroid nodule I am so worry , I just want to ask the member of this board please thank
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    • Posted

      Hi. After surgery I was quite sore and my vocal chords were damaged which meant I lost my voice and had trouble swallowing drink because I could choke however this didn't last forever. In terms of medication I don't believe there was a big issue at first, I was put on the starting dose and it went from there. I think the cancer diagnosis overshadowed everything else so i don't really remember feeling unwell from the medication, I think if I had felt unwell it would stand out for me.

      Because you're having the nodule removed you should be ok after. Probably be sore but even if they removed that side of the thyroid you shouldn't have to take any tablets because the side they leave intact can often cope. You may need to take some calcium if your parathyroids are damaged during surgery, not sure how common this is but mine never revived themselves so I am on alphacalcidol daily.

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  • Posted

    Hi Beth, hope you are feeling a bit better since your dose was lowered? I've had similar (though not as severe) symptoms myself due to being too high-treated (like you I had a cancer so have to have my tsh suppressed). I've had my medication reduced today as I couldn't tolerate the side effects - like you felt agitated, anxious, nauseous, couldn't sleep, had weird cramps round body and started having panic attacks I think triggered by racing heart etc. It's a horrible feeling! I noticed online there is something called thyrotoxic periodic paralysis which is muscle seizures like you described - caused by being too high treated so should settle down once your dose has settled.

    May I ask if you are feeling better and how long it took after your dose was reduced?

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