Ever increasing dose of Levothyroxine

Hey, hope everyone is well! My name is James and I'm 22.

I had two stem cell transplants in 2010 for bone marrow failure and the radiotherapy treatment resulted in my thyroid 'turning off'.

2012 is when I was first diagnosed with Hypothyroidism with my TSH levels over 100 and T4 apparently unreadable.

Ever since then I've been on an ever increasing dose of levothyroxine and have now hit 250mcg daily. This is being managed through my GP and I'm starting to feel like I should possibly be referred to a consultant now to see if there are any other options but i'm not sure if there actually are?

Any help or advice would be much appreciated!

14 Replies

  • Hi James,

    Do you have some latest thyroid blood tests, so that members can see what is happening? If so post with reference ranges for comments.

    Do you feel unwell? What are your symptoms? It may be that you need some supplements. Have you had blood tests for serum iron, ferritin, VitD, B12 and folate? These are often low in hypo people and this will affect your absorption of medication and the way your body uses it, plus you may have symptoms directly attributable to low vits and minerals. Your GP should do all these tests for you.

    When you have results, post again here for further advice, as there will be many other suggestions once we can see these. You may benefit from the addition of T3 or by taking Natural Dessicated Thyroid, although this would probably not be prescribed by your GP. Hope this help to start you off on the great thyroid quest.

  • Hey, sorry I do have my latest results from last week! They only told me my TSH and T4... TSH = 19 (0.4 - 4.5)and TT4 = 28 (50 - 160)

    My original diagnosis counts from 2012 were TSH = 126 (0.4 - 4.5) TT4 = 'unreadable' (50-160)

    I'm not aware of any tests for vitamins and minerals, I will chase this up next time!

    Apart from feeling knackered all the time and having an awful memory; It affects my mental state quite severely, i'm on 40mg citalopram daily which keeps me going but I'll have bouts of depression quite badly when the levels start to sink again. I have thinnish hair at the front, some nails are growing with ridges in them and i'm finding it hard to maintain a healthy weight let alone lose it.

    Is T3 something that the doctor would be able to prescribe, I've seen it a few times when i've been browsing regarding this problem and seems to benefit a lot of people!

    Thanks for your help!

  • Hi.

    Your t4 is still very low which suggests you may possibly have some absorption issues. Do you take your thyroxine on an empty stomach an hour before food and away from other medications? This is really important.

    It is also important to get the blood tests done that Hennerton recommends. They could be low and this causing issues with absorption and metabolism of thyroxine.

    The dose of thyroxine you are taking is relatively high and it may be worth getting a referral to an endocrinologist to see if anything else is going on.

    Your symptoms are fairly typical of hypothyroidism so hopefully they will improve if you can get your thyroxine level up.

    T3 may be an option but you won't know if you need it until you get your T4 level up. When that happens if you still have symptoms t3 may be worth trying.

    Sorry I couldn't be more help.

    Carolyn x

  • Hey Carolyn, thanks for your reply.

    I take my levothyroxine on an empty stomache when I wake up but I also take my citalopram at the same time. I eat when I get into work a couple of hours later.

    I'll bare the the T3 in mind for the future, thanks for the help!

  • I'm just going to check but I think it's best to take them at separate times of the day. Taking thyroxine at night could be an option. In some people it can increase absorption.

  • Ok. Although there are no recorded interactions between thyroxine and citalopram, it is generally recommended that you wait at least an hour after taking thyroxine before taking any other, supplements or other medications.

    I can't see that the citalopram would hamper absorption that much but it may be a consideration.

    Are you taking anything else? Even supplements, especially iron and calcium, can have a big affect on absorption. Antacids are another big issue.

    It may just be that you aren't absorbing well because you are still very hypothyroid and you might just need much higher side of thyroxine than most people.

    II hope you get to the bottom of it soon.

    Carolyn x

  • James, Your TSH should be just above or below 1.0. Yours is far too high at 19.0. TSH >10 is diagnosed as overtly hypothyroid. Levothyroxine dose increases/decreases are usually in 25mcg but you are already on a suppressive dose so ask your GP to refer you to an endocrinologist to investigate whether you have some form of thyroid hormone resistance.

    You can post a question asking for recommendations for endocrinologists in your area via private messages and email louise.warvill@thyroiduk.org.uk asking for her list of reccommended endos.

    Ask your GP to test FT4 and FT3 as these give a better picture of thyroid health and I suspect yours will be very low. If your GP won't run the tests you can order them privately from Blue Horizon and Genova via thyroiduk.org.uk/tuk/testin...

    Read Dr. A. Toft's comments in Treatment Options thyroiduk.org.uk/tuk/about_...

    Email Louise if you want a copy of the article to show your GP.

    The vitamin tests Hennerton suggested are important as good levels are required for absorption of Levothyroxine and conversion of T4 to T3.

  • Thanks for your advice!

    L'll be booking an appointment this week to see my GP and ask for a referral to try and sort this out!

    I'll email Louise and go from there, thank you!

  • I'm surprised you don't have even more hypothyroid symptoms with your still high TSH and extremely low T4.

    Firstly you need FT3 test to get an accurate picture whether you are converting properly. If your doctor refuses to order this can you pay privately?

    You also need iron panel and ferritin checked and vitamin D as low levels can inhibit conversion of T4 to T3. Vitamin b12 is often low with hypothyroidism so that should be tested too.

    Lots of people will recommend changing from levothyroxine to either synthetic T3 or natural desicated thyroid - NDT and that may turn out to be the case for you but I would have those tests mentioned first to get a full picture.

    In the spirit of Dr Skinner (RIP) he used to advocate beginning by making sure levothyroxine was being taken in adequate dosage. Firstly there are lots of people that do manage well on the standard treatment - it just had to be at the right levels. I'm one of those. Even though you are already on 250mcg it has been known for people to need higher dosage. Secondly it is easier not to have to fight or pay privately for T3 or NDT - IF Levo works ok. However, you may find even higher doses don't improve things for you.

    Turning to the depression. I just want to scream when I read about doctors chucking anti depressants at the problem instead of dealing with the root cause. Depression is a major symptom of hypothyroidism. I'm not surprised you have depression with thyroid levels like this. Your anti depressant medication may help somewhat but the list of side affects for that are horrific and will add to the symptoms and confuse the picture. It's well known that enlightened medics prescribe T3 with good results for depression. Funny that they often fail to make the link between low T3, poorly treated thyroid and depression.

    It's remotely possible an endocrinologist might help IF you can be referred to a decent one. They are sadly a rarity.

    I hope you get the help you so clearly need from the medical profession to avoid having to go down the road of self treatment. However, the odds aren't that good. That's why you have found your way to this amazing site with people that have made a similar journey back to good health and can help you.

  • Thanks for your reply, I think i'm not consciously aware of a lot of the symptoms or feeling them as much due to all of the treatment I have had in the past. I don't really know what feeling normal feels like if that makes sense and end up leaving it till it's too late.

    I know my Ferritin levels are very high and were at 1020ng/ml a couple of months ago due to the vast amount of blood transfusions I have had in the past. So I know that shouldn't be an issue.

    I don't see any side effects from the Citalopram fortunately so it's not such a problem for me. The only thing I get worried about is my dependency on them.

    I will take everyone's advice and definitely try and see a consultant who will hopefully look at my thyroid issues in more depth and start T3 or other treatments!

    Thanks for your help!

  • Yes, your doctor can prescribe t3, He needs to look it up in his bible. ( the British national formulary ). Listed as Liothyronine. evidence.nhs.uk/formulary/b...

    You also need to explore the posibility that you cannot do the t4/ t3 conversion thing..... ncbi.nlm.nih.gov/pubmed/191...

    Or that you have a gene disorder which predominately affects men..... mcgill.ca/channels/news/new...

    There are also links about lack of t3 and depression.....

    Good luck.... Sart digging around. And remember you can order your own tests and buy your own meds if you have to....... Best to get the doc on board if you can though

    G x

  • This sounds great thank you!

    Yourself and everyone have been so helpful! I'll definitely be looking into T3 more and badgering my GP to help me out with it or get me referred to a suitable consultant!

    Thankies x

  • I just thought I'd check... Since you have referred to your TT4 figures I'm guessing you don't live in the UK? Total T4 is never measured by the NHS (as far as I know), instead Free T4 is measured - and this is more helpful and informative than the Total figure. Where you live will probably affect the options you have most easily available to you, and could affect the advice people give.

    The ideal thyroid tests to get done are :

    Free T3

    Free T4


    and there are various antibody tests which ought to be done too, although I have never got to grips with the subject of antibodies because mine have never been positive. In an ideal world you would get a Reverse T3 test done too, but that never happens in the UK unless people pay for it - and even then I think samples are always sent to the US for processing.

    From the patient's point of view the Free T3 figure is probably the most reliable single indicator of how well people feel. From the point of view of the medical profession though, the Free T3 is not relevant to hypothyroid people and the only thing that really matters is the TSH, so getting a Free T3 test can be very difficult. (Most doctors are not well-educated on thyroid matters.)

  • Hey, I do live in the UK, Manchester to be exact. I may have gotten the TT4 and FT4 mixed up as over they phone they just reeled out a set of figures in relation to my results.

    Thanks for explaining why T3 isn't regularly picked up on! I'll definitely take this into account next time... I'll make a point of it to try and sort it out! T3 seems to be the winner at the moment form everyone's suggestions but I will of course try and be referred to a suitable consultant.

    Thank you!

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