scared

Well I finally have an endo app next week after months of fighting with my doc to get one..I have been hypo for 6 years on 100mg levothroxine but still feel really ill.. I was really happy at the time but that has now turned to absolute panic and full on anxiousness . I feel stupid typing this but don't know how to deal with this. .I know I need to go to get tests done to see why I'm feeling this way and I know if I don't go I face feeling tired and ill constantly. but for the past year I've built up this fear of hospitals in the past week I've convinced myself I'm gonna have to have a needle in my neck. convinced myself I will have thyroid cancer. then on the other hand the doc will tell me I'm being stupid and there's nothing wrong with me and I spend a lifetime feeling this ill. anyone who can be ell me what I'm to expect at this appointment please share as it can't be as bad as what is going on in my head. god I hate this disease. x

15 Replies

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  • Fairydust76

    All your fears are being compounded trying to guess what your consultation will be like.

    You may be lucky and see a nice sympathetic Endo who will prescribe some T3 to your levothyroxine. 100mcg is not really a large dose and T3 might be sufficient to make you feel well.

    Fortunately, the BTA etc have changed their guidelines and now say that T3 can be prescribed but just to make sure, take the appropriate page of the British Thyroid Association's 'brand new guidelines'. I think they've been forced to 'turn' due to the Scottish Petition.

    When our thyroid hormones are too low, we can go through all of the emotions, go over in our mind what he/she will say or do, what we will say and you will feel exhausted.

    When you get there you'll maybe find your mind has gone blank but all of that doesn't matter.

    When you go into the Consulting Room, sit down say that 'Hello doctor, I am here so that you can improve my life by prescribing some decent thyroid hormones which will turn my life around and I can get on with living. I am fed up being constantly unwell and GP is unable to help". Leave everything else up to him/her.

    This is a big step on your journey so get the necessary tests done and if it's blood tests remember to get the earliest possible and fast. Leave about 24 hours between your last dose and the blood test. Get a print-out for your own records and you can post for comments.

    Don't worry - you employ the Endo and we all do by paying taxes towards the NHS.

    :) :)

  • Thank you so much for your reply just what I needed to hear I'm getting myself all in a tizz xx

  • Because we're not on an optimum of medication, our emotions go a bit haywire but I am sure you'll be fine. After the consultation treat yourself to something for rising above the occasion.

  • I find it's really helpful to make a list of your symptoms and all the things you want the consultant to know about. You can type it into your computer/tablet so that you can add things as you think of them over the next few days before your appointment. Then print out 2 copies - one for him and one for you. I've had doctors say how useful this is.

    Take pen and paper so that you can make notes if you need to.

    Is there someone who can go with you? Maybe someone who can be a support and who you can discuss the results with afterwards.

    Hope it all goes well. With the right help you will get much better.

  • Good advice from Anthea55.It really does help both the Endo and you.

    Last week I did an A4 print out of my thyroid journey and took 2 copies with me to my appointment,as I attend a teaching hospital and know that I will always see a member of my Endo's team as well as the consultant.

    My summary was read more quickly than I would have said it all and when asked if I wanted it back I said that he could keep it if it helped .He thanked me for it and added it to my file.I was happy as I'd introduced things that hadn't been discussed before .

    Hopefully you will get blood tests for TSH,FT4 and FT3 to determine what's happening and whether you need the addition of T3 to your medication.

    Please don't get worried....they are there to help you and team work will hopefully improve things for you.Hope it all goes well.

  • Make sure you have your FT3 tested - if low - then this can contribute to your feelings and emotions. We need good levels :-)

    Hope all goes well with the Endo.

  • Hi, I felt the same and had the same situation , this is what I did, I wrote all the symptoms I was still having on a pad, and there were a lot. Check to see if your having any side effects to the levo by looking at the info in the packet,I was and this helped in the discussion .Also check these symptoms on the thyroid website, make sure you know what your going in there to talk/moan about. Once I showed him the list instead of mumbling on,he took notice, write anything down you want to ask as your brain goes to mush when your in there.but stay firm but not rude, x

  • Hi. I've got experience of the panic and anxious stuff but from a different angle. I got all these symptoms when I came off of block and replace for Graves' disease. when I stopped my meds my tsh was up at about 3.5 making me more hypo. Over the past 3 months it's headed back down to about 1. It's only now I'm starting to feel normal again. dr thought I was stressed but I didn't feel stressed about anything. It felt more like a physical feeling of anxiousness for no reason and it was just horrible. There was no rationalising it, it was a feeling that would just come from no where. Just had to grit my teeth and ride the waves as I called it. I didn't have any meds apart from beta blockers which helped mildly when it was really bad. They also tested me for an adrenal gland issue but so far that hasn't shown any issues up and I'm now feeling normal again -so likely to just be the thyroid balancing effect. Alex

  • Hi, poor you. Ive recently had my first endo appt. the nurses checked my urine and blood pressure. Consultant asked me some questions, palpated my abdomen, listened to my heart and felt my neck for thyroid gland abnormalities. She then ordered a series of tests which involved a simple blood test. Tell doc that your are anxious, especially about needles etc. I would write down a summary of your illness, including symptoms and treatments. If you become emotional, you can just hand this to doc to read. Im sure what you are feeling is part of this disease and by taking that leap and making the most of your consultation, you could well be on the road to a new life. Please call the clinic in advance of your appointment and ask to speak with the nurse in charge and explain your fears. Im sure they will do all they can to help. Good luck!

  • Dear Fairydust, I am sure you are going to do just fine, all of the excellent advice above will help enormously. Also I find that taking magnesium and GABA help when I am anxious...Wishing you the best of luck and let us know how it goes. hugs, D

  • First what have you been diagnosed with

  • You mention being hypo for 6 years, perhaps you have some mineral and hormone deficiencies which can effect how your Levothyroxine works. Going to see an endocrinologist is a good decision, specialists can order some investigations and blood tests which GP's are restricted from doing. Hopefully, once the endo identifies possible causes and supplements, you will feel much better. Vitamin D was one of my deficiencies and I could not believe the transformation after a few weeks of supplements.

    The endo might do an ultrasound scan of your thyroid gland however, this is usually painless and only takes a few minutes.

    Try not to worry and remember to post your results on the forum for others to help you to understand what's going on.

    Good luck!

  • Hi Faireydust, I too am terrified of hospitals. Unless your GP has felt a nodule in your neck it is unlikely you have thyroid cancer and even if you have a nodule it could be benign. Now, let's assume the unlikely worst case scenario, they suspect cancer. That "needle in the neck" is a Fine Needle Analysis (FNA). While the thought of it is terrifying it is actually not very eventful. I had one and I didn't feel very much at all, a blood test draw is worse - if that puts it into perspective for you.

    Another way of looking at this is, if there is no nodule then there is nothing to stick a needle into!

    Your Endo will do a lot of blood tests - get your own copy of these and hold onto them. Read as much as you can about this whole subject, it will help you a lot - oh, and as someone else said above, take your own written list of questions, it will give you a strong sense of staying in control of the whole event.

  • Thank you all so much for your messages. you have all helped me get my head together. It's nice to speak to people who know exactly what your going through because they are going through it to. no one apart from hubby knows about my condition as don't want to worry them and although hubby is really supportive he has got to be bored of listening to how Ill I feel ..I'm boring myself talking about it but sometimes just need help and advice. really appreciate all your help.x

  • i totally understand..i am deathly afraid of doctors and blood draws. The truth is that mainstream medicine doctors, especially in the UK, will not test a free t3 levels, they will not tests a reverse t3 level. Failures with levothyroxine are usually due to non converting of the levo, to the active hormone, which is t3. Be prepared to not get properly tested. You can order your own tests without prescription tho.

    Also, be sure you find out and are tested for hashimotos disease.

    I am not trying to make you feel bad again, but be prepared for this. If mainstream doctors knew what to do, you would not have gone all these years ill. Sorry, but this has been my experience. This is why i no longer do it their way and do it on my own. It is the doctors that have caused my emotional mental issues, with treating me like i don't matter, like it is all in my head.

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