im so confused been told i have under active thyroid

hi i had a baby 11 months ago and have been getting more and more tired since so i kept going to doc and having blood test for aneamia all were fine then when i went monday doc suggested thyroid function which thurday was proven to be the case. i wasnt given my numbers so i have no idea i was give 125mg of levo to take daily. im really very cofused doc just brushed it off like lots of people suffer from this take the meds your be fine. i basically know nothing about this illness other than what ive found online and now im just plain scared. any advice please

20 Replies

  • Try not to worry- it is treatable, but 'getting it right' is what many are here for.

    Sorry, without blood results and ranges comment will be limited -so you will have to brave your surgery for more info to which you're entitled. Ask for a print out is the best ,if not easiest, route.

    Many here have had the same fight on that score, too!

    Rest assured you will get good help here and learn as much as you require to help you move forward.

  • Thats quite a big starting dose he has given you - usually you are started on 50mcg's and then increased after regular blood tests are carried out every 6 - 8 weeks. It would be really helpful to get your actual results, especially as he has started you on such a high dose, I wonder if your levels are really high. Phone or go to your surgery on Monday and as the receptionist for a print out of these results (she cannot refuse to give you them as it is your legal right to have them and if she does get funny about this ask to speak to the practise manager). Also get a print out of your iron results so that you can post them on here, along with your thyroid results, for people to comment and advise.

    While you are there book up another appt for bloods to be taken as it seems your GP has no intentions of doing this - they really do need to be tested regularly at first so that a correct dose of medication can be obtained. You will also need to try and persuade your GP (if I were you I would try another one at the same surgery as the one you went to seems a very uncaring GP) to test your VitD, B12 and folate levels to see if any of these are low.

    Did your GP advise you how to take your levo - it needs to be kept, at least, two hours away from any food, drink (except water) and supplements you may be taking. If you are taking anything with iron or calcium in then this needs to be increased to four hours.

    Lots on here take their levo last thing at night, making sure they haven't eaten or drank anything (including milk which contains a lot of calcium) for two hours as levo is better absorbed into the system overnight with no food to hinder this process.

    It is all very confusing at first but with the help of this site and the very knowledgable people on here you will get the hang of it and it really is nothing to be scared about - concerned yes but not scared.

    Just shout if you have any question regarding the above.

    Moggie x

  • moggie thank you for your kind reponse i asked about my starting dose as i had read that 50mg was the starting dose he said its not a good amount to start on i need this much.i also asked too have vitamin and mineral blood test he said no i dont need it take the meds and i will soon feel better. yesterday was day one of meds and i did feel amazing had loads of energy but today my god i feel like rubbish so tired. if you dont mind can you suggest a series of questions i can take to our lovely female gp tomorrow as im just not sure what i need to be asking?

  • Firstly you need to be asking your print outs of all you recent results and then the tests mentioned in my first reply - tell her you have been doing some research and have found that thyroid sufferers are prone to vitamin deficiencies and, as you want to get the best out of your thyroid medication, you would like these checked to see if any are low. Dont tell her you have been on the net or a self help group as many doctors will dismiss patients out of hand because of this.

    Ask her opinion on the high starting dose and also if she knows of any foods or medication that will interfer with your levo. Tell her you are aiming to educate yourself as much as possible regarding your thyroid issues and any help she can give you would be appreciated. If a GP knows you are willing to help yourself then, hopefully, they will go the extra mile to help you.

    It is quite common to feel worse when you first start taking thyroid meds as you poor thyroid, which has most probably been struggling for months and months, will take a rest so what little thyroid hormones it was producing will slow down but this is only temporary and will soon settle down. As I said this is quite common so just hang on in there and hopefully your appt tomorrow will go well - dont forget to ask her when you will be re-tested and dont walk out of that surgery without a blood test appt being booked.

    I'll look out for your question tomorrow on advise about your blood results that, hopefully, you will have obtained. Dont forget the ferritin (iron) ones as well as these are important.

    Good luck for tomorrow.

    Moggie x

  • Sorry to jump in here but just wanted to thank moggie for the advice on when to take the levo, nobody has told me that! I've been taking mine after breakfast and now it seems that's the wrong time :/ why can't we be told these things?

  • Your welcome.

    Moggie x

  • Moggie you said that most people take their levo at night, just wondering, as ive taken mine this morning, when to take my next dose as id like to try taking it at night instead to see if it works any better as it doesnt seem to be making any difference to me as i dont feel any better than i did before my total thyroidectomy

  • Sorry for the delay in replying.

    If it was me I would just take an extra dose on the night - so in fact you are taking two doses for just the one day. T4 is a storage hormone, it is stored in the body for up to six weeks so taking two doses in one day really shouldn't make much difference, as long as you don't make a habit of it and it is just to change from morning dosing to night time dosing.

    Moggie x

  • Good advice from moggie.

    It is perfectly fine to start someone on a dose of around 100mcg if they are very hypothyroid. As moggie says, it would be helpful to know what your results are. If your TSH was very high, then this dose would likely be fine to start with although it's a little higher than I would have expected. If it seems that your thyroid is now barely working, he may have roughly calculated the dose you would need as a full replacement and started somewhere near. This is fine as long as your iron and cortisol levels are ok.

    Have a look on the main Thyroid UK website here

    and more specifically here


    and here

    The good news is that many people feel well once they get to the right dose of thyroxine. Of those that don't, some have low or low-normal levels of iron, ferritin (stored iron), folate, vitamin B12 or vitamin D. These can cause symptoms very similar to hypothyroidism and can also have an effect on how well your body is able to use thyroxine. If you find you don't feel well after a couple of months on a good dose, these would be the first lot of tests to ask for. Even if you are not anaemic, your iron or ferritin could be low enough in the range to cause symptoms.

    You will see a lot of stories on here from people who are not well. I suppose many of those who are well don't need to post. I am finally feeling pretty good again and hopefully you will soon.

    I hope this helps.

    Carolyn x

  • Hi sorry if I'm misunderstanding all of this but could mineral or vitamin defiences cause it too look like hypothyroid when really it isn't? Like if I got tested for them then supplemented would it make thyroid work better sorry if this isn't making sense I knew I had to ask for thyroid test but I really didn't think it would be the case so I'm rely just shocked as I was just "tired" didn't think id actually have it my head isn't making sense of this

  • Being low in certain vitamins cannot give you a false thyroid reading, it can just make the symptoms confusing. Being low in iron can cause extreme tiredness - which is why your doctor was testing you for aneamia. Being low in VitD or B12 can cause exactly the same symptoms as thyroid illness but they would not give you a false thyroid reading, but being low in any of them can stop your thyroid medication working properly.

    Your thyroid control everything your body does from hair to skin and brain to bowels so if your thyroid has gone wrong then everything about you will not be working properly. It will slow everything down as it controls your metabolism, in other words how fast your body works from your digestive system to how quick you think.

    It is a very confusing and complicated illness and to make matters worse it can effect people in different ways. Some thyroid sufferes put on lots of weight, like me, where as others say their weight does not change. In the early days I felt as confused and bewildered as you but it is suprising how quickly you will pick things up, even quicker when your thyroid medication has kicked in properly.

    I know you are still hoping that this is all a big mistake but I would be very suprised if a high thyroid level is anything but thyroid illness. Ask the same question of your GP tomorrow and see what she says but I am almost 100% certain she will tell you exactly the same.

    Sorry is this is not what you wanted to hear as I know you are taking the news very badly.

    Moggie x

  • Moggie your right I keep questioning am I really that ill I'm frightened what it all means for my future health will I just keep getting worse till I'm some husk of a person I'm worried it means i can't have another baby I have pcos already and ive piled on pounds since having baby and I've been so tired and run down since her birth can I put myself through it again. My hubby just doesn't get that I'm freaked about this it doesn't help I'm only thinking on the negatives I'm your glass half empty type feeling a bit sorry for myself

  • As you know you could well still be suffering from postnatel depression and thyoid illness can also cause depression and anxiety so your reaction is totally logical to us on here.

    What you have got to remember is that many, many thyroid sufferers do very well on levo and, as long as they take that little white pill every day, they can almost forget about their thyroid condition. I to have a thyroid condition but I hold down a very demanding full time job, run my house and manage my huge garden and look after my four grandchildren every weekend (every other weekend I have three out of the four staying ALL weekend and they are still quite young) so I dont consider myself a husk of a person, just a person who has a thyroid condition. I think your reaction to this is mainly down to having a baby that is not very old, feeling ill for so long (which will have pulled you even lower) and the fear of the unknown.

    Yes your glass might be half empty at the moment but with the help of this site and a good GP it will soon start to fill up again and will be over flowing before you know it.

    Chin up and make yourself feel better by giving your beautiful baby a cuddle.

    Moggie x

  • Moggie you've been a gem thank you I've loaded my phone with questions. Is it normally a problem to get vit and mineral levels tested by doctor? I hope too know more tomorrow

  • Some GP's will be fine about testing your vitamins but others, like mine, are always looking at the money aspect which I think is very short sighted of them as testing early on saves an awful lot of time, money and problems in the future. What you dont want to do is to go down the self supplementing route until you know you are actually deficient as this will just cause more problems.

    Just keep asking questions on here if you are not sure of anything and use your common sense as to what advise may suit you and what may not. It seems to me that, although you are in a panic about all this at the moment, you are a sensible person who will be able to work through all that this illness will throw at you and come out the other end with a very bright outlook.

    Let us know how you get on tomorrow wont you.

    Moggie x

    p.s. forgot to say that we seem to have more in common than you may first have thought as, at the moment, I have a cyst measuring 10+cms x 8+cms hanging off my right overy which needs operating on which just goes to show that life does, and can, go on no matter what is chucked at you.

  • Hi I am exactly the same as you.. I had my daughter 2 years ago and just put tiredness down to being a mum of 2!

    It is really scary but once I am holding on to the thought that once we get on the correct dosage we will be ok!!! Have you started to feel less tired?

  • Got my results and wow my goodness

  • Well don't keep us in suspense - what are they or have you done a separate question.

    Moggie x

  • It is great that you have found this forum and that you are wanting more information. There is so many young mums mis-diagnosed with post-natal depression when it is their thyroid not functioning properly. As it is to mis-diagnose menopausal symptoms when an older lady has awful symptoms.

    To look on the bright side, you have finally been diagnosed and have started treatment. Like the other say, it is so important to become as informed as possible, as to be blunt, your GP knows very little about hypothyroidism. Hopefully you will have medication dose increases until your TSH is under 1 and your Free T4 at the very top of the lab range (do find this out, it will be something like 12 to 22). Having your B12 above 500 is important too! Most people in the UK are deficient in vitamin D so do get this tested and your folate and ferritin.

    In my experience I think it is best not to mention the word "internet" to your GP, you could perhaps say that you have joined a support group. How are you getting on taking your meds? I take mine at bed-time, I find this easier as I can enjoy a cup of tea first thing in the morning.

    There is a lot of information to read on so take your time to understand it all. Enjoy your baby :-)

  • It's nothing to be scared about. A lot of people seem to develop thyroid problems after having a baby for some reason. My daughter is 37 and I believe mine started to fail after having her but it wasn't diagnosed for twenty years. My daughter has also been diagnosed after her fifth child although it started to fail after her fourth four years ago. Ask your doctor for your test results so people can help you more.

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