I'm a newbie and didn't realise that it's all DIY !

I was diagnosed back in April after feeling exhausted and falling asleep all the time. I also had aching muscles and joint pains. Not to mention brain fog! I was told my thyroid levels were "a bit low" and that "there are some antibodies". I was prescribed 50mg Levothyroxine and told to get my bloods checked after 3 months. Phoned for results and was told "everything normal" by a receptionist. Had another blood test last week (3 months) When I walked into the phlebo room she asked what I was having done. Stupidly I said Thyroid levels and that's what they tested for. TSH only! It has gone up from 1.8 to 3.6 and is within the range. Afterwards I wondered if I could have asked for everything! After reading a lot of stories on this excellent forum I have realised that it is DIY ! I have been gluten free for the last 9 weeks and a couple of days ago I ate a mince pie as it was offered and I ate it without thinking! Big mistake! I had joint pains and a peculiar lump in my throat feeling, like I was going to get a sore throat. Would the gluten have acted that quickly? Also have had a weight gain of 21 lbs since starting thyroxine. I have always had a slow pulse rate about 55-60 is normal for me with a low blood pressure. Always told I am healthy! Clearly not! Any ideas what I should do/ask for ??

10 Replies

  • Lynnelaras,

    I don't understand what you mean by "it is DIY".

    Ask your GP receptionist to printout the results of the thyroid antibody test you had. Most people have some antibodies but high levels of antibodies means you are positive for autoimmune thyroid disease (Hashimoto's).

    Some practices only test TSH. If your practice won't do FT4 and you want FT3 which is rarely tested in primary care you can order a private thyroid test via thyroiduk.org.uk/tuk/testin... Blue Horizon Thyroid Plus 6 tests TSH, FT4 and FT3 and Thyroid Plus 11 includes thyroid antibodies and some vitamin and mineral tests too.

    TSH 3.6 when you are taking 50mcg Levothyroxine means you are under medicated. The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 1.0 or lower with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.roberts@thyroiduk.org.uk if you would like a copy of the Pulse article to show your GP.

    If you have sensitivity to gluten you can experience discomfort within hours which may take some days to resolve.

  • Clutter I think Lynnelaras says diy she means we have to figure most of this out ourselves which unfortunately is true as the docs are rubbish!!!

  • Exactly Natchap!

  • Thank you Clutter. The only time I have spoken to a Doc is on the telephone. Haven't seen one face to face yet so I wanted to know what to ask for when I make an appointment this week. Our surgery doesn't let you make appointments to see a Doc they will always phone first, hopefully this time I will get to see one armed with all this info! I realise I will have to have more blood tests and wanted to know what to ask for. I assumed blood test were requested by the Doc not the patient! We all know "assume" makes an ass of you and me!!!

  • Lynnelaras,

    Ideally TSH, FT4 and FT3 will be ordered but as I said, FT3 is rarely ordered, and there may be local agreements which mean that FT4 is not ordered unless TSH is abnormal.

  • Yes, gluten can act that fast, but it can also take up to 24 hours to show an effect.

    I don't suppose they tested you for coeliac disease? There is a version that causes all the same symptoms as hypothyroidism. Its useful to know, but by now you would probably have to eat the stuff for a few weeks before testing, and you might not feel that was worth it.

    I sympathise with the feeling that you are on your own. I have rather turned it around now, I am responsible for my own health. I research everything, I question everything. I take the view that my doctor is part of team me, but certainly not the only part.

    Some people gain weight on thyroxine, but at the moment, if your TSH is 3.6 then you are undermedicated, and that is enough to pile on the weight.

  • Thank you Ruthi! Loving Team Me!

  • Love that too! Ha! New mantra.

  • Hi Lynnelaras

    I've been gluten free since August and the couple of times that I've ingested gluten I have very quickly developed a sore neck and throat. I have found that I have to be strictly gluten free. I also can't drink instant coffee any more

    Lu x

  • As you did say in your post "Didn't realise it's all DIY" I will give you some advice from a very longterm thyroid 'battler'. Treat ALL doctors including endo's as incompetent, use them for free blood tests, do your own research (on here is brilliant), and ask questions for help and advice on here. Please don't waste your time waiting for appointments, getting anxious and upset about them. Most folk on here have taken their own health into their own hands. Yes, I'm cynical about all doctors who pretend to know about and treat thyroid. That's because I've been pushed from pillar to post for 30 years and have only recently got my health back after attaining the necessary knowledge. I hope I haven't frightened you but that very sadly is the current state of affairs in the endo world. Best wishes x

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