A+E visit

I have had my thyroid removed end of March and a few weeks ago, discovered there were cancer cells beginning to form. I took 100mg of Levothyroxine for about a week after surgery but then I stopped. It is now the end of August and I am still not taking my meds.

I was wondering what kind of symptoms do I need to experience before I go to hospital? (I am a 20 year old female)

38 Replies

  • Louteasdale, if you're experiencing chest and heart pain go to A&E, otherwise see your GP.

    Why aren't you taking Levothyroxine?

    TSH of thyCa patients is usually suppressed <0.1 to avoid recurrence of cancer. Your TSH must be sky high by now, mine was 107.5 four weeks off meds. You will become very ill and may cause irreversible damage to your heart and kidneys if you don't take Levothyroxine or other thyroid replacement.

    Typical hypothyroid symptoms are extreme cold and fatigue, slow heart rate and pulse, palpitations, tremors, musculoskeletal pain, slowness of thought and speech, weight gain, constipation, loss of head and body hair, dry flaking yellowing skin and flaking nails.

  • okay so I am experiencing 9 out of the 12 symptoms you listed above... no heart or chest pains, though!

  • forgot to mention, I saw my GP but she said my hair loss was 'normal' and concentrated mainly on my mental health. felt a bit belittled, if I'm honest.

  • Did you tell your doctor you weren't taking your levothyroxine?

  • no I didn't :/ I was going to but she kept going on about previous psychological issues due to how hyper my thyroid was before it was removed

  • OK. You see, not taking your thyroid hormones would make it appear to her that you must be depressed, so she jumped to the wrong conclusion completely.

    Have you got some Levothyroxine - have you been picking up your prescriptions? You do need to start taking it, but after so long without I'm wondering whether you might be better off taking a half dose to start with - 50mcg. But you need to get to your doctor (maybe not that one, she sounds useless!) as soon as possible to explain what's happened, so that you can get put on the right dose over the next few weeks and months. Don't be embarrassed - they clearly did a terrible job of explaining about the need to take your medication and how important it is.

    Keep posting - please let us know how you're getting on xx

  • I was in 100mcg but they bumped it up to 150mcg about two weeks ago (not like I've been taking it, mind you) xx

  • Why not - what's scaring you about taking it?

  • It is a slow way to commit suicide but not taking any replacement if you have no thyroid will eventually kill you. You will eventually fall into a coma and if you are lucky intravenous liothyronine can be given, there is however a significant risk of dying or more likely long term irreversible brain damage. It is very sad you state you are only 20 it seems a great waste of potential. Please see your GP, or go to A/E, or contact your original hospital doctor. With the help of the people on this forum it is possible to get better and have a life. Please try.

  • If I start taking it now, will I be okay?

  • When you went to the doctor, did you also get blood tests done for thyroid? Or have you not told the doctor that you are non-compliant with taking thyroxine? Because hypothyroid people back in time when there was no treatment were put into lunatic asylums. No one knew really what was wrong with them but they were entirely out of their minds.

  • I had blood tests done just over a month ago

  • Lou, to be honest with you I don't think you are being honest with people on this forum. If you've had a total thyroidectomy then your TSH would be sky high. If you had blood tests done just over a month ago and your GP didn't say anything, then either your GP is a moron or you are withholding information to the people on this forum. I don't think it is fair to other people on this forum who sincerely and with dedication take time from their days and lives to help people who post here when it appears, to me at least after reading your other responses, that you are playing the stupid.

    Post your blood test results and then at least people would have some idea of what is going on.

  • I swear on my mothers life I am not lying to you. I think my TSH was either 27 or 29

  • so I just found the letter my endocrinologist sent to me... my last blood tests were 24th June and my TSH was 29.5, FT4 7.2 and FT3 3.2

  • Morning Louteasdale (is that Harry Styles' hairdresser? :) )

    Looking at those results then, you've still got some functioning thyroid gland tissue. In your case, that's not a good thing. The levothyroxine you need to take will have the benefit of dampening down any attempt made by your thyroid to regrow - including regrowing cancer cells.

    Your doctors will be puzzled and concerned about your results - that's why they've put up your levothyroxine. But they need to know that you've not been taking it at all, so they can get a handle on what's really happening.

    Please make that appointment like I said last night. Keep in touch x

  • What else did the letter say?

  • Lou, ideally your TSH should be <0.1, FT4 >15 and FT3 >4.5. If you take Levothyroxine your levels should be in those areas in 2-3 months.

    Symptoms will get steadily worse without Levothyroxine and you'll end up losing most of your hair without it.

    If you'll say why you won't take Levothyroxine we'll try to help you.

  • I don't know you will need medical supervision. Good luck

  • how will they medically supervise me though? I wake up at 6 every morning to go to work?

  • Lou, I'm surprised you can get out of bed! What are your thyroid results?

    Patients doctors suspect are non-compliant in taking meds are sometimes asked to attend the surgery and take medication in front of the doctor. If you take your Levothyroxine daily that won't be necessary. Your symptoms will start to improve in 4-6 weeks but weight loss and hair loss will take the longest to improve. You should have a follow up thyroid test 6-8 weeks after starting Levothyroxine. Take your dose after the blood draw.

  • Your going to have to rush to the hospital and tell them what's going on and that you are not taking your meds. The hospital will do whatever they need to do. I know it is not easy. My thyroid was suppressed and when my meds were messed up my cancer came bak second time. So always take your meds.

  • what will they do to 'make' me take them? I only had micro-papillary carcoma so they weren't sure how big the tumours would get ( I had two small cells) so I don't think it will come back

  • But you've had your thyroid removed (completely?). Your body can't make thyroid hormone without it. That's why you need to take the levothyroxine. Your body needs thyroid hormone for every function - every one. They didn't tell you that?

  • no, actually! coming to think of it, they didn't tell me that

  • I'm thinking maybe it was a partial rather than a full thyroidectomy, cos I'm not sure how you're still thinking and posting without any thyroid hormones on board.

    But the fact that your dose was increased shows that your blood test results are showing you need that replacement hormone badly.

  • nope! It was a full thyroidectomy... my thyroid was SO hyper (my levels were off the scale high) so I guess I had some remaining thyroid hormone in my body. My memory is detiriorating a little bit, I guess.

  • It doesn't really work like that. It's more likely that you've "got away with it" this long because you're young. But you know things are going downhill fast now and they aren't going to get better without you starting to take your thyroxine. Don't think of it as medicine - it isn't. It's like insulin to a type one diabetic - you can't make thyroxine for yourself anymore.

    Honestly, it's not a scary medicine - it's something your body would produce naturally if your thyroid hadn't been removed.

  • so what symptoms do I need to experience before going to hospital?

  • If you have 9 out of the 12 symptoms Clutter explained earlier, then you're probably feeling awful. I'm guessing you're very scared right now {hug}. Is there something that's happening now that's scaring you that isn't on Clutter's list?

    Are you on your own tonight? Is there someone who could take you to A&E?

  • well there's nothing really urgently wrong with me if that makes sense? I don't really like to go to A+E to spend like 4 hours there for them just to send me back home again... I guess some other symptoms are like sickness on + off, acid stomach, muscle pain, back pain, extreme hair loss etc.

  • Well in that case, make an emergency appointment to see your GP tomorrow - don't feel guilty about taking an emergency appointment, cos you need to get this sorted as soon as you can. You could even show the doctor these posts - that way you wouldn't have to explain it all. I'm the one who's dissed your GP, not you, so there's nothing to worry about on that front. ;)

    As I said before, let us know how you get on - cos we care, ok? xx

  • Lou, nobody can make you take Levothyroxine, you can't be forced. Why are you reluctant to take it?

    It only takes 1 cancer cell to proliferate. You have a better chance of it not returning by keeping your TSH low.

  • You should talk to them. They will just do your check up and advice you on what to do. Hospitals will not force you to do anything you don't want to do but will advice you. If doctors have given you meds it is for a reason. They will ask you why you are not taking them. If there is anything upsetting you tell them they will listen. God forbid it does not ever come back, But with cancer u can never guarantee. That is why they have given you levothyroxine as a precaution so that it is less likely to ever come bak. The levothyroxine helps replace thyroid hormones to help your thyroid function since you have no thyroid. Thyroid is a very important organ of the body it helps all your organs in the body to function and without it your body will not be able to function. So the lovothyroxine does all that a thyroid would normally do.

  • Puneet is right, they'll want to help. I think there's been a breakdown in communication, as the main reason you've been prescribed thyroxine is because you can't make it any more - it also stops any thyroid tissue left behind (and there'll be some) from growing new cancer cells, but that's a secondary reason. It's not an anti-cancer drug - it's a hormone.

  • Are you listening to any of the replies? What is it that you do not understand? You are playi g around with your life, waken up and take this seriously, when i was at my worse i had problems with my memory and understanding what was being explaned to me, i now tske someone along to all my appointments, when we compare notes after consultation, i am amazed what i have missed or missenterpreted. Plesse talk to your parents, ask a friend, i would be distraught if you were my daughter and i didnt know what you were going through. I am not telling you off, i am trying to make you aware of your actions and the long term dsmage you will do to yourself, now take this big hug i am sending you and please phone your dr for another appointment xx

  • Louteasdale, I have had thyroid cancer, and had my whole thyroid removed, too.

    The thyroid is an important organ of the body. It produces a chemical called thyroxine. Thyroxine then spreads throughout your whole body, going to your heart, digestive system, all your muscles and every tiny cell.

    The thyroxine tells each cell to get going, take energy and use it to keep your body running smoothly. This means your heart to beat, your digestion to burn up all the food and get it ready for the rest of your body to use, hair to grow, and extra energy for you to run around and do the activity you need to.

    You and I (and a few other people in this thread) don't have any thyroid of our own, so we can't make our own thyroxine. Which means our cells don't have this special chemical that tells them to get some energy and do their work. Without it, every part of our body will get more and more tired and slow, until eventually we can't move out of bed. Eventually we could even die.

    This is where levothyroxine medicine comes in. This imitates the work your own thyroid would do. It goes all through your body, telling the cells to work. Those of us who have no thyroid need to take this every day, to make sure our body keeps running to speed.

    I hope this helps and makes things more clear than it was at the hospital! Silver x

  • PS The TSH test Your GP did is a very simple test of how slow your body is. The higher the number, the slower your body.

    Ideally you would like it to be 1,or even zero. Yours was 29.5, which is a much higher number, this means your body is slowing down a lot, and making you feel a lot of symptoms.

    The longer you wait, the higher the number will get and the sicker you will feel.

    If you start taking your medicine, your body will get back to normal speed, and your symptoms will start to clear up.

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