I need help urgently. I was in Oct. 2010 diagnosed with a slight hypofunction of the thyroid and was supposed to take 75mg L-Thyroxin, this

was still in Germany. My doctor (a nuclear specialist) also saw during the scintigram that there was something in my thyroid, but he said it would be too small to say what it is, it could be nothing, we should just keep an eye on it. I then moved countries and live now in the UK since Summer 2011. I had since then nobody checking my thyroid anymore, my gp made a standard blood test and said it would be negative! I would not have a problem with my thyroid (suddenly). So I stopped taking the L-Thyroxin. Now suddenly in October it started that my neck felt as if someone is choking me. It always came and went away for a while. I wander around with it now since 4 weeks and it scares me. I can't sit for long anymore in a normal position because it feels as if I can't breath. My neck hurts at the front where the thyroid is and I sometimes have the feeling I can feel the thyroid inside my throat :( I went back to my gp and she made another blood test but said there would be nothing! I can't believe that though because I am constantly strangled now. It makes me cry because through panic to be honest. My gp now admitted to request an appointment with a specialist, but she doesn't know when this is. I can really not imagine to walk around gasping for another 2-3 months :( I'm really desperate and I have no idea what to do. I would even go private if I would know where and how much it costs. I also suffer from PCOS if that should be important and I've added about 50kg last year! My hormones are all extremely mixed up and I fear this might have triggered worse probs with my thyroid! I'm near Cambridge. If anyone could give me advise I would be really really grateful!

17 Replies

  • Can you resume taking the thyroid meds until you see the specialist. It may have been suppressing a nodule or goiter which is now pressing against your wind pipe. I believe there is a connection with PCOS and hypothyroidism.

    Your clairvoyant GP isn't listening. You were diagnosed with thyroid 'something' and prescribed thyroxine and a watching brief in 2010. Hardly a "sudden" thyroid problem

  • Hi At a guess, I would say that the GP just tested the TSH, whitch is really insufficient, Ask for a print out with results and ranges ( differ) from the receptionist. You need to have a TSH, T4 and Free T3 test first. If GP unwilling ( cost) then use Blue Horizon, main site,, finger prick , or venous but only if someone will do the blood collection for free, otherwise expensive. Quote TUK 10. for discount. Then urgently ask for an ultra sound of the thyroid.GP This will only show the thyroid itself. However, probably swollen and nodules, nodules always need a fine needle biopsy. I have major parathyroid problems,and the rest. It does not sound to me like a PTH ( parathyroid ) problem. To make sure of this ask the GP to do an AM test of PTH, Corrected calcium and vit D, it must include all 3 done together. If all above range or D high for you and other 2 well above range. Ask GP to send you for a retest for PTH, nuclear scan,, this will only show PTH and has to be at a large teaching hospital as nuclear.

    I would also e mail Germany and ask for your last scan etc.

    Then if a problem e mail the Endo, via sec., and ask to see Endo urgently. Do not phone with a message, as secs. are not medical and get in a mess, ( tried that lots of times).

    Above all, try not to worry. If obvious then you need surgery go straight to a specialist thyroid surgeon.

    Best wishes,


    PS Do not forget the other tests you need, when crisis is over.

    Not sure if you know, to reply to an individual post, click on "Reply to this" under that post.

  • I am sorry you are having problems with your neck and breathing.

    Phone your surgery and ask who your GP has referred you to and the hospital re your thyroid gland and email as Jackie has suggested above.

    I would visit the Accident and Emergency Department to see if they can advise on your neck/breathing as it could well be due to being unmedicated. If you go about 7 a.m. usually this is a quieter time and you may not have as long to wait. Many GP's are unaware of clinical symptom of hypothyroidism. I wouldn't say about hypothyroidism till they ask you questions as your GP has not diagnosed you and you are not on medication.

    PCOS and female problems in general can also be symptoms of hypothyroidism which can be relieved with optimum medication. Breathing problems can also be due to lack of thyroid gland hormones and could be serious.

    Always get copies of your blood tests for your own records, with the ranges, and you can post them if you have queries.

    Many GP's do not know the clinical symptoms of hypothyroidism, of which there are many.

    Let us know how you get on.

  • Sounds to me like you should never have stopped taking thyroxine

    your thyroid has simply inflammed and enlarged thanks to auto immune hashimotos

    you may also now be aneamic and low in ferritin and other vitamins

  • I had to go to A&E with this. I was given an ultrasound there & then.

    Mine was my graves' goitre & a bit of anxiety thrown in to make it worse. I have had a thyroid storm as a teenager so I don't mess around if my thyroid makes me feel that awful I treat it as an emergency :) Also at the time my heart rate was in the upper 100's.

    They contacted the endo at the hospital and he gave me a prescription. That's just what mine ended up being. X

  • Hi. My advice would be to go on line and look up thyroid endos at say local Nuffield hospitals and ring up secretary and book appointment. Tell them you will get referral from GP if necessary. Then go to GP and tell them you have made appointment. If you pay privately you can by- pass GP in this way. When diagnosed you can go back to NH for treatment.

    I had to do this to get diagnosed hypo.

  • Hi, if you follow Banjogirl's advice, there is a Nuffield Hospital in the middle of Cambridge with a good reputation. The NHS hospital is Addenbrookes a very large University Teaching Hospital. Mixed reports from the Endo Dept but if you decide to go NHS don't let your GP send you to any of the smaller hospitals in the area. Good luck.

  • Price to see a Specialist at Nuffield? I just paid £200 to see an ENT in Shrewsbury, that may be a guide, depends on regional variations etc..

  • Hi. After several years of feeling progressively unwell but GPs and consultants not taking me seriously when I told them that I really believed it was my thyroid, I was finally proved correct in my self-diagnosis of Hashimoto's thyroiditis, when I was given an ultrasound scan.

    I also have PCOS and was told repeatedly that my weight gain and fatigue were down to this alone. All my thyroid test results always came back "normal", but they only ever tested TSH and T4. When they finally agreed to test my thyroid antibodies, (TPOAbs), at 1250 they were way over the normal of <30. The ultrasound scan revealed that I had a large goitre that was growing inwardly - like you, I felt that I struggled to breathe or swallow properly.

    When trying to find out what was wrong with me - I never believed the doctor's diagnoses of M.E. or depression - I cam across medical studies that refer to there being a link between PCOS and thyroid autoimmunity, in particular, this one…


    In addition to the advice already given by other people, based on my own experience, I think I'd also get your Thyroid antibodies tested. Your GP should be able to arrange this for you. Once I had this test done, I had evidence to back up my argument for an ultrasound scan, and then finally proved that I'd been right all along.

    Good luck :)

  • Hello everybody, thank you so much for your fast replies! To answer some questions: I've seen on the letter for the 2nd blood test that my gp had requested to have my TSH checked, but I don't know which exactly and when it came back she looked at it and asked me where I was in my cycle and then she said it would be ok. She never actually showed me the results. She put her hands around my neck and said she wouldn't feel anything unnormal :( well I feel it inside! When I asked already after the first blood test if I could have a print out of the results I was told that wouldn't be possible. Regarding the medication, I wasn't sure how much to take because I had the feeling it wasn't enough anymore, and after I was told there wouldn't be any thyroid problems I gave the rest of the pills which I had here to my mum as she also needs them. That was in 2012 though so they would be empty for a long time now anyway. I don't know if there might be a genetic connection, but my mum had a radio iodine therapy to kill off her thyroid and she was diagnosed with hashimoto (with basedow) and sadly when she was between hypo- and hyper didn't lose weight through it, but got heart problems through it :(

    Anyway, I said to my gp that it is really not bearable and all she said was that if it's getting worse I have to come back to the gp surgery. I tried to make it clear that I really need a scan of my thyroid urgently but she told me she couldn't influence how fast it's gonna be. I feel so totally left alone! My doctor in Germany told my mum that if I should decide to come over to see him we should call him directly and he would squeeze me in (although he is totally busy now short before christmas). I'd love to do that but it includes a long travel of about 14 hours, so I'm a bit caught between a rock and a hard place atm :( I will check out the Nuffield Hospital anyway and another member was so nice to send me the contact of another doctor over here. Thank you so much for all your support!!

  • Would the person who was so kind to send sasana details of a doctor also send them to me, Many thanks.

  • I just read that the doctor passed away on tuesday! So bad :(

  • Thanks for telling me sasana. As you say so bad all round.

  • Please, please insist on getting an ultrasound scan of your thyroid gland done!!!! I ended up having mine removed. Good luck :)

  • Another question, would it be advisable if my mother sends me some of my old dosage L-Thyroxin and I take them until I'm able to see a doctor??

  • If it was me ...yes but just remember not to take them for at least 24 hours before any blood tests are done

  • I just wanted to update my situation. I found some of my old thyroid pills and started to take them. After six days I feel better already!! Will be a much easier task now to wait for an appointment. I just want to say thank you to everybody who answered me to my questions and via pm, you are all great and very supportive!! xxx

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