Advice needed please

Kind of new to all this really. Started to feel unwell with various symptoms after the birth of my now 10 month old son. My neck was really tender to touch under my windpipe, i was exhausted, palpitations etc, etc. My GP took some bloods and as there was a strong family history of thyroid issues tested my antibodies too. My results came back testing positive for antibodies and that my bloods were slightly hyper, she referred me to the endocrinologist. Saw the endocrinologist who took more bloods and pretty much said they'd just watch and wait and see what happens and to see her again in 8 weeks. 2 weeks later she wrote to say my bloods came back that i was hypo and to start levothyroxine. I was a little reluctant to start the meds due to palpitations, so held off and held off. Fast forward to 4 weeks ago, my heart started to race and skip beats, i felt anxious, legs were like jelly, loss of appetite, passing urine more frequently and not able to sleep, i just felt awful. Saw my GP again who took more bloods and they came back being within normal range and positive still for antibodies. I actually feel worse now than i did when i was hypo. My mum, grandma and sister all have thyroid issues, they were all Hyper and had Radioactive iodine treatment to kill them off. I still feel super anxious, heart racing (resting pulse around 100) and my heart is skipping beats and i'm going to the loo a lot. I've been checked out by a cardiologist in the past and all looks good from their point of view. I'm feeling really low today, i have 2 young children and I just want to feel well. Does it sound to you guys that this is all thyroid related? I'm seeing my GP on Friday but as my numbers are normal again no one is interested. I have an appointment with endo in June. Sorry for the long ramble, i'm really feeling so low about this all.

3 Replies

  • This watching and waiting game really isn't good enough. You are at a tricky stage and it seems to me your thyroid hormones are swinging between hyper and hypo. Depending on the point in time or even the time of day at which they are taking blood is affecting the results - and the decision making.

    Sounds to me they don't know what to do yet and that's why they are doing nothing. In the meanwhile you are struggling especially with a young family.

    They would prefer you to be the passive patient and just go away until they can fit you into their regime and timetables.

    One thing I learned very quickly is they will not care or be one bit interested in how long or how badly you and your family's life us being affected. Only you and those dearest to you will be concerned.

    In some ways I understand it's difficult - they do need to use test results to a certain extent but going just by the figures of the limited tests, it's not clear if you are hypo, hyper or 'normal'. They don't seem to be considering the signs and symptoms.

    I'm not medical but personal experience tells me you are definitely not normal - the antibodies show that. The symptoms you describe are hyperthyroid (although some hypo people do get palpitations). It is very unpleasant and worrying for you.

    If I were in your shoes the first thing I would do is get copies of ALL your test results with the reference ranges - which is important. This will tell you a lot - firstly whether they are just going by TSH. If so, you need to have T4 and T3 tested which may give a better picture. Post your results here for further advice. Start keeping a log of how you are feeling and symptoms. It will build a picture.

    Your GP should be explaining what the plan is - waiting to see is not enough information. Your symptoms are not normal and just because you have one so called normal result, should not mean they do nothing.

    Although there are some downsides - it may be possible to help control the symptoms. Beta blockers can have side effects and I'm not a fan of medicating for the sake of it but for me they were a life changing relief and helped me to function while my hyperthyroidism was sorted. The relief from a resting pulse of 140 upwards was remarkable.

    One step at a time - with you having control with shared decision making is the way forward in my opinion. You need to be polite but firm that you are not just going to just go away and wait and the sooner they know that the less likely they can ignore you.

    Good luck x

  • "normal " means SQUAT

    we need the actual results and reference ranges

    but by sound of things you may well be lurching between hyper and hypo phases of Hashimotos and need much better response from GP and Endos

  • I really hope things improve for you soon. Having 2 young children to look after is hard enough without feeling ill all the time. Beta blockers sound like a good idea - some people take them for exam nerves so they can't all have awful side effects. It would at least be something you could try to see if they helped. That might help the doctor towards a diagnosis too.

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