Newbie. Please help!!

Hello. Just been diagnosed under active thyroid. My tsh was 4.8 and my t4 level was 13.1. I have positive thyroid autoantibodies. I had loads of symptoms confusion, migraines, extreme tiredness, thinning hair, brittle nails and I feel like I'm trying to swallow past a stone!

My lovely doctor has me on 50 mcg levothyroxine which I take first thing in the morning.

My questions are, I'm feeling much better during the day but I get to 4/5pm and I grind to a complete halt. I have absolutely no energy and I'm in bed and asleep before 8pm. Do you think I need a higher dose? Would it help with my tiredness? I also have no idea how to interpret my blood results. Any help would be very gratefully received.

11 Replies

  • Welcome to the site and please bare wth me while I run through a few basic do's and dont's as far as thyroid medication is concerned.

    Can you tell me if your GP told you to leave, at least, a two hour gap before and after taking your levo as far as food and drink (except water) are concerned - if not then this is advisable as levo need a completely empty stomach for your body to be able to absorb into your system properly. If you are taking any other medication, supplements or anything with iron/calcium in them then increase that to four hours as both iron and calcium (which include milk as this contains a lot of calcium) can effect the absorption sugnificantly. Many people, including doctors, now find that the body is able to use levo more effectively when you take it last thing at night as there is not food or drink to interfer with it if taken just before you go to bed, with water, making sure you have not eaten or taken any other meds/supplements for two hours before.

    Has your GP tested your Vitd, iron, ferritin, B12 or folates? If not it would be a good idea to ask for these to be checked as a lot of thyroid patients find they are low in these and this can also hinder your bodies ability to use your levo correctly.

    Moggie x

  • Have I got things wrong? I thought it was OK to eat breakfast 1hour after taking Levothyroxine in the morning.the pharmacists actually put half an hour on the my prescription packets though I leave it an hour.2hours seems a lot especially as you would have an empty stomach after sleeping all night.

  • It really depends on how you are feeling - if you feel o.k. after leaving just an hour then keep on doing that but I always stick to the two hour rule as this is what works for me. You might find that if you did leave it two hours then you might need less levo, or have better absorption, but if you are o.k. and stable with what you have been doing then just carry on. Its more important the other way around - in other words not taking levo an hour after eating as this can really effect absorption. As we all know its a very personal thing and when you find soemthing that suits you then stick to it.

    Having breakfast cereal (which contains iron, calcium and all sorts) with milk (which also contains calcium) is definately not a good idea an hour after levo though.

    Moggie x

  • I think I shall try taking it at night again.My Endo is in favour of that too.I have porridge in the mornings about 7.15am so can't envisage taking meds 2hrs.before that.

    Also can't say I feel well enough to leave things as they are either.Last time I took it before going to sleep I was waking in the night with a funny feeling in my stomach

    however,will give it another will only be for a couple of weeks then things might change again after seeing my Endo.......Thanks Moggie X

  • Your very welcome - why might things change once you have seen your endo? hope you dont mind me asking but I am curious.

    Moggie x

  • No problem.....My visit to my Endo was my first last November and he immediately ordered FT3 and FT4 tests having the form initialled in order to make sure they are done.He feels they are essential tests though others don't.

    I'm going to the hospital where his clinic is to get them done first thing Wednesday morning.Having spent 11 years on 50mcgs of Levo wondering why I didn't feel right whilst my GP kept telling there was nothing wrong with my thyroid( All tests "Normal ) I knew no better until I joined this group and started asking questions.However,when my GP agreed to start raising my Levo. I felt even worse and at this point he decided to send me to an Endocrinologist ( having previously said there was no point.) It was through another member that I found this Endo. and asked my GP to see him as he was recommended to me,so you can see that I'm sincerely hoping that he finds I need something different to the Mercury Pharma which I think maybe causing my problems,or maybe I'm not converting my T4. Otherwise I have to look elsewhere.

    Hope this gives you my background and makes it all a bit clearer.....just another classic case of GPs not being properly trained in Thyroid matters I feel or people wouldn't be suffering over such a long time!

  • Thanks for the explinatin and now I can see your dilema. It could well be the MP levo that is causing you the problems and if your endo does not come up trumps with a different option PM me and we'll talk it through, but it does sound as though he is a good endo so there's hope yet.

    Would have liked to have commented more but I am mindful that we are on someone elses post and dont want her to think we are being disrespectful.

    If you want to PM me anytime your more that welcome to.

    Moggie x

  • Thanks Moggie....I will keep in touch and report back after my Endo appointment.I appreciate that we'd gone off at a tangent from the original post.I will make a new report when I have more news after the 10th Feb as there are others following with similar problems,however,it will be good to be able to PM you if I need more discussion.X

  • Hello and welcome to the forum. Yes, you may well need a higher dose but perhaps not yet. How long have you been taking 50 mcg? Your doctor should do a blood test in about 6 weeks and will then if you are lucky adjust the dose. Alternatively may find you are told you are fine, even though you still feel tired and ill. If you ask for these results and post here with all the reference ranges, people will help you understand them and advise what to do.

    You may also be low in various vitamins and minerals, as we thyroidies usually are. You might ask your doc to check iron, ferritin, B12, folate and Vit D? All of these help your body to deal with being hypo and I have found iron and ferritin at optimal levels, (not at the bottom of the range) are critical for me. Your doctor is unlikely to accept this by the way but not all are as blinkered and yours sounds like one of the good ones!

  • Thank you Moggie and Hennerton. My doctor told me I could eat an hour after taking my tablet. I'm leaving at least 90 minutes. All the information I'm seeing online mainly says take the tablet in the morning, so I'm a bit confused. I was on 25 mcg for 4 weeks and my doctor put my dose up a week ago. Thanks for the heads up about other blood tests. I'll ask her when I go for my next blood tests in 5 weeks. I think I'm very lucky with my doctor now. I went to see a male doctor over three years ago because of the problems I was having swallowing and feeling like I was swallowing past a stone. He told me it was all in my head and made an appointment for me to go see a psychiatrist. Needless to say I didn't go back! Once again thanks for your advice.

  • Levo really must be taken on an empty stomach, as lot of things will stop your body absorbing it, and as it takes two hours after eatiing for a womans stomach to empty this is where the two hours comes from. It says half an hour on the patient information leaflet (PIL) but people who have this illness are the ones that really know what works and what does not.

    Even doctors are now recommending levo be taken of a night if possible because of absorption issues and some, like myself, find this more convenient so they can still have their morning cuppa or breakfast without worrying. You will find with this illness that what suits one will not suit another, in other words there are no hard and fast rules, and we can only share our experiences and advise on this basis.

    If you get the basics right then you will have a good chance of resumming a fairly normal life, like making sure your levo is getting into your system properly, getting your vitamins checked and being watchful for other autoimmune illness's, like coeliac (gluten intolerance). Some people say that its the gut going wrong that then causes thyroid illness, which is what I believe when you are diagnosed with autoimmune thyroid illness, so going gluten free can also really help.

    Having a thyroid condition is very complicated as one size definately does not fit all, which is what makes this site so valuable, and you will need to swap and change dosage times and strengths until you find the right combination for you. Some people cant take their levo of a night due to other medication or they find it causes them headaches but if you can then it is a very easy solution to keeping it away from foods and drinks.

    Always have your blood tests done of a morning, as your TSH will be higher then, and if you do take your meds in the morning then do not take them until after your test or you could get a false reading.

    Browse this site and click into questions or posts that catch your attention, that way you can read and learn as much as possible, another good site for info is this one (it is American but it a very good site)

    Read and educate yourself as much as you can and you will have a very good chance or getting your health back, as you have already found out there are a lot of doctors who do not know enough about thyroid illness and will misdiagnose so you will need the knowledge to challenge this and fight your corner.

    Good luck with your journey, you have made a good start by finding us and starting to question things.

    Moggie x

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