Recent hypo diagnosis

I was diagnosed under active thyroid last Tuesday having felt ill for a while but told blood tests done then were ok but thyroid had not been tested. Had thyroid test Monday and called back to GP Tues pm to be told that my level was 4 and wonder I was still functioning. At the time was just so grateful to know I was not going mad and that feeling like a 95year old with rheumatoid arthritis in every joint, so tired it hurts, slimming world not working and face like a balloon, with memory and brain functions like a sieve would ease, that I wanted to cry and kiss the doctor. Put on 100mcg of levo but having found this site I have been taking it wrong, was having it with breakfast so I could have nurofen too so my joints would function. Not on empty stomach so 6 days of recovery wasted....please could someone recently diagnosed give me hope that the joint aches and lethargy will go soon as I have spent since last tues primarily in bed or on the couch.

19 Replies

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  • When you reach an optimum in medication, hopefully all your clinical symptoms will subside. Sometimes this can be a slow process as your body has to recover. Always get a copy of your blood tests results for your own records and so that you can post them if you have a query. Make sure they have the ranges too as labs throughout the country differ.

    Also ask your GP to check your Vitamin B12, Vit D, iron, ferritin and folate as the first two in particular can be low.

    When you have your blood tested for thyroid gland hormones, do not take your medication beforehand and have it as early as possible as the TSH is highest then. Take it after.

    It is a big learning curve.

    thyroiduk.org.uk/tuk/treatm...

    thyroiduk.org.uk/tuk/treatm...

  • Thank you very much for your swift response. I really appreciate it and will ask for results and vitamin tests when I next see my GP.

  • When I was due to have my bloods done my doctor told me to have my medication as I would normally do then have blood test done. I'm confused...should I query this with him.?

  • Your doctor is wrong. By taking your bloods for the thyroid gland after you have taken your medication skews the result.

    From now on, do not take your meds on the morning of the blood test and have it as early as possible. Always ask for a print-out of your blood tests for your own records and so you can post them, with the ranges (these are important) for comments.

    If you take your medication at night miss this dose until after the test. You can then carry on with the medication as is usual for you.

  • Thankyou for your advise I will certainly do as advised...

  • I'm not having another blood test until June....shall I request another one earlier bit worried I could be over medicated because of taking meds before blood test ...

  • Hi Mcole,

    Your symptoms sound very much like my own were, I started off on 50mcg then Doc upped it to 75mcg. only when I swapped to taking my Levothyroxine at night on an empty stomach and 4 hours away from iron and calcium/dairy foods did my symptoms all disapear after only two days, I could actually exercise and dance around with no aches pains or foggy brain, weight fell off too, though 2 weeks later the symptoms came slowly creeping back and I am waiting to see Doc. again. Think I am either not converting my T4 to T3 or just need my Levo upped again.

    You might also be needing certain vitamins and minerals too.

    It will get better eventually, but there might be lots of ups and downs, but stay tuned into Thyroid Uk support, they have helped me get a better picture on everything, I am still learning now ;) :)

  • Thanks for your info and support. Think I will try taking meds at night before bed from tomorrow.

  • Hi and welcome to the site, dont worry your six day if recovery wont be completely wasted if you take them with breakfast levo will just not be absorbed as well as on an empty stomach. Try and leave at least half an hour before eating or tea/coffee. The alternative would be to take it at night time before bed but leave at least 2hours between eating and taking your levo. Some get on better taking it in the evening.

    Everyone is different some people will start to feel better within a week but it will take about 6 weeks to build up to better levels and you should then get a bloodtest from your gp to see where you tsh and t4 are on thyroid replacement.

    It will improve but again everyone is different and it depends on how long you have been suffering with an underactive thyroid. It took about 1.5-2 years for me to get completely back to normal but i suspect i have been walking around with a struggling thyroid for 16years prior to diagnosis (when the first symptoms started appearing but it didnt show on blood test). Joint pain and water retention were some of the few things to go first though.

    I hope i have given you a little hope and would recommend you read up on the condition on the thyroid uk website which is full off eonderful info to help yourself manage the condition and off course there are loads of people on here willing to help and support each other.

  • Before you go any furthur get tested for

    ferritin

    folate

    b12

    calcium

    vit d3

    magnesium

    zinc

    all need to be in upper quadrant of their ranges before your body can utilise any dosage of levothyroxine

    never never take "normal" as a result for anything

    your tsh needs to be below 1 and your free t4 at least 18 or above along with other results aas recomended above before you will feel well

  • I too have recently been diagnosed and have all your symptoms and more. Your recovery is not going to happen overnight. Some say three to six weeks before any improvement is seen and perhaps longer. I started on 25mg for the first fortnight and then increased to 50mg. Over the three weeks I have been taking the levothyroxine my emotional state has improved slightly but the fatigue is still the same as is the sensation in my throat. I return to the doctor in February for more bloods to ascertain if the level of medication is sufficient. I see this as a trial and error situation until my personal level is found and think it is just a bit of a waiting game really. Hope you soon start to feel better, I do sympathise!

  • Welcome to the site. Yes it can be a slow process and a steep learning curve plus we are all different and can react differently so be prepared for that. This is an excellent place to start though and ask any questions you wish, we have all been there so appreciate how bewildering it is. Sadly not all doctors are on the ball so always get a printout of your results-you are entitled to that-and post them for comments. We have all become suspicious of being fobbed off because our results are said to be 'normal'. Very often they are not! You sound as though you aren't climbing any mountains at the moment and hopefully in a few weeks you may find you can manage more. At that point you may feel you are going backwards again so there are often a lot in increases to be made in the early days-as your body starts to respond more you may well need more to maintain that and take you to a new level. Hope you are feeling better soon.

  • Hi I was in the same boat as you , finally diagnosed after piling on the weight even though I attended the gym 3/4 times a week, I'm on 100 mcg too and u was taking mine with a cup if tea in the morning . I was told not to take with milk as it can effect absorption do now I have a herbal tea at 6 am and take my tablet and then only have milk after 8.30, took a good 4/6 weeks for me to start feeling like me again and back in the gym,

    This site is brilliant and people are so helpful , having my bloods taken again this week but was also told not to take my meds that morning until my bloods have been taken , appArentky it gives a truer reading ,

    Hope things improve for you too over the coming months

    Take care

    Lisa

  • Hi

    Can I ask what the lab range is for the TSH out of interest?

  • Hi MC welcome to the club!

    My success story is here, scroll down to Liza's story... thyroiduk.org.uk/tuk/get_in...

    I'm now really well having learnt how to manage the condition from this site and Thyroid UK. I use the symptoms list on Thyroid UK to track everything and believe it helps me stay well.

    It has taken me a while to learn everything I need, but I'm well and my confidence has returned.

    Good luck.

    Liza

  • ...it could be that starting on 100mcg is just too much for you. We are all so individual. I started on 25mcg and then 50mcg - even that small amount made me unwell. I stopped for a week and then started again - slowly increasing. I then went T4/T3 and am now just T3. Do you have Hashimotos ? - the Auto-immune Thyroid illness. You mention RA which is Auto-immune so it may just be that you also have Hashimotos. AI issues often accompany each other. Auto-immune illness can start in the gut with gut dysbiosis - or leaky gut syndrome - so going gluten free can be an excellent start to improving general health. Wheat of today is not the wheat of yesterday - and you do not need to be a coeliac. Just being gluten sensitive can be a problem.

    I have Hashimotos and Crohns - but my health has improved greatly since being diagnosed in 2005 and following this site for the last two years.

    Keep reading and learning - lots of reading on the right of this page - under Browse by category !

    Hope you soon feel better....

  • You don't give your age, so sometimes difficult to know if joint pains are fairly normal or not.

    unfortuanatly many hypo sufferers suffer aches & pains unless on the correct dose, I am 76 years old.and don't realy exercise enough, but Im pretty sure most of my pains are thyroid related

  • Hi not sure if this is the right way to reply to all but a HUGE thank you to you all for your information and support. I am feeling a lot better today and have taken the levo first thing without tea and half hr before breakfast. Managed to function today and joint pain has decreased well too. Still feel slightly spaced out but nowhere as bad as before. I cannot thank you all enough and I will be sure to ask GP to check all you have noted on here and also a copy of my levels each time I go. I am starting to feel 46 again and not 96! Mandy x

  • I too was recently diagnosed,9th Jan to be precise, given 25mg Levo, been feling good one day crap the next, I have pains in my legs for years now but recently like you feeling like an 95yr old, pains in every joint, my back, arms, I wont go on, hoping o get better also expecially legs,soI can walk normal again.

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