Newly diagnosed

Newly diagnosed

Hi there! Seeking some comfort and advice from your community. Here's my last two weeks in a nutshell. Thank you so much for reading.

I am an PICU nurse, doctor approaches me during shift last week and asks why my thyroid looks so big. I hadn't realised, I look in the mirror and think oh my gosh, how didn't I see this. Very enlarged, must have been a rapid growth for me not to notice.

I see my GP, urgent tests done.

TSH: 42.4

Free T4: 7

Very hypothyroid huh, then antibody test was 495, Hashimoto's confirmed.

When asked whether I was extremely tired, I guess I was, but I've always been a tired person. Itchy skin yes, I put this down to the changing weather. I've always been acne prone.

I've been started on Levothyroxine 50mcg, to be increased monthly to a recommended dose of 200mcg. I've had these a week now and all I've noticed is intense stomach cramping. I haven't had a period in ~2 years so I can't tell whether it's menastral or abdominal.

Please can I ask whether anybody has had a similar journey and will it get better? I'm hugely concerned by the fact that the thyroid surgeon I saw on Friday told me the goiter will probably never go down, please see the attached picture. I'm only 23, :(. Also, how have people found weight loss? I am usually a very slim girl but have been piling weight on for about a year now (makes sense now). I'm 5'7 and 135pounds; used to sit around 120pounds. I'm active and I eat well; I'm considering the paleo diet but I'm a vegetarian.

Thank you everybody!

4 Replies

  • Unfortunately, variants of your story are all too common.

    I fail to understand why they have recommended a dose of 200 mcg. You need what you need - and that might be significantly less than 200 mcg. Though probably, in time, at least 137 mcg. What I am saying is, don't let anyone push you to a higher dose just because they think it might be needed. See what happens and how you feel in the fullness of time.

    If you have been suffering for a long time, you might have had compromised absorption of nutrients for some time. Suggest you get tested for iron deficiency and vitamin B12 - both most especially as you are vegetarian. Also consider vitamin D and folate. Occasionally someone also gets a vitamin A test - conversion from beta-catotene to vitamin A is impaired while hypothyroid.

    Do take your levothyroxine on its own - well away from food, drinks (other than water), supplements and other medicines. Take with a glass of water (exact amount not critical). Some people feel better taking it at bed-time rather than the more common morning.

    If you are feeling itchy, try taking over-the-counter antihistamines. Try cycling round among the various options - sometimes one works for a while, then another seems better. Don't go mad on them but see if they help you feel better.

    Others will pile in with their suggestions/observations. Take time to read slowly and carefully. Look things up yourself. Have a look at the main Thyroid UK site:

    Above all, recognise that it takes time. Lots of time. As you recover, you will feel better. But wherever you get to, there is always hope of further recovery.

  • Welcome to our forum and am pleased you have joined. As Helvella has pointed out - no-one can tell exactly how much levothyroxine will be required. Nearly everyone on this forum, I should think, are all on different doses.

    Unfortunately, you can feel awful when first on levothyroxine as your body has most probably been depleted very gradually for years. As you say you just get used to our bodies 'not feeling so good' plus the clinical symptoms of which even doctors are unaware

    They only take notice of the TSH and adjust levo according to it and may very well stop increasing when it is 'within range' when most of us need a TSH of around 1 or below.

    Someone on the forum this week had a goitre removed. So I would put up a new post asking for a Private Message to be sent to you with a recommendation and then ask your GP to refer you.

    When you get you blood tests for thyroid hormones always have the earliest possible appointment and fast (you can drink water). Leave about 24 hours between your last dose of levo and take it after the test.

    Always get a print-out from now on for your own records with the ranges and you can post if you have a query. Ask GP to check B12, Vit D, iron, ferritin and folate as we can be deficient.

    You have an autoimmune thyroid disease called Hashimotos and I'll give a links(s) below:

    Members have found going gluten-free has helped reduce antibodies.

    You say you are only 23 but have had no periods for two years - 'female problems' and fertility can be clinical symptoms of a thyroid gland dysfunction but many doctors are aware of any clinical symptoms and the symptom is apt to be 'treated' rather the our whole body, i.e. with hormones.

  • I've been started on Levothyroxine 50mcg, to be increased monthly to a recommended dose of 200mcg. I've had these a week now and all I've noticed is intense stomach cramping. I haven't had a period in ~2 years so I can't tell whether it's menastral or abdominal.

    It's strange. Some people get given 25mcg or 50mcg levo to start with and the doctor suggests repeating blood tests in 3 months or 6 months or a year, and any dose over 75mcg is considered high. Yours has suggested increasing monthly and has decided in advance that your ideal dose is 200mcg. Both of these ways of dealing with hypothyroid patients is wrong.

    The ideal way to deal with things as far as we (the patients) are concerned is :

    1) Get blood tests every 6 weeks and 25mcg increases until sufficiently dosed and patient feels well. The doctors will always do TSH. The patients want Free T4 (which is sometimes done, but often it is only done when TSH is out of range) and Free T3 tested as well. It is always good to know how your thyroid antibodies are doing as well, if you can persuade the doctor to test them. But once you've had a positive result they rarely test again.

    For more info on the different kinds of thyroid antibodies, take a look at this :

    2) The doctors often say if TSH is anywhere within the reference range then you are sufficiently dosed. The patients usually feel well when Free T3 is in the top third of the reference range. But since doctors don't test Free T3 very often the best we can hope for is to persuade a doctor to treat us sufficiently to get TSH to around 0.5 to 1.5 i.e. quite low in the reference range.

    This link is well worth reading :

    Another tip for the future - when you ask for copies of your blood tests results always ask for the reference ranges as well. There is a difference in how you deal with a result if the result is rock bottom in the range or mid-range or high in range. And there is often a big difference in how you feel!

    Rather than going paleo as you suggested (I'm not saying that is a bad idea, but might be a little premature), try going gluten free first. Some people also find they have to go dairy free in order to feel better, but in my opinion we should cut out food groups only if we need to. So, go gluten free first, see how you feel, then experiment with dairy free if you want to.

    Regarding your goitre - don't leap into action to get rid of it, until you know how treatment affects you. It might not go down, but on the other hand it might. Don't leap into surgery you might regret for the rest of your life without thinking about it long and hard. If it isn't affecting your breathing, I wouldn't worry about it. The people on this forum make it quite clear that life without a thyroid gland, or with a thyroid gland that has been reduced in size, is no fun at all.

    Your periods may return soon. The thyroid affects every cell in the human body, and has a big impact on fertility and gynaecological function. With too little thyroid function just about anything can happen.

  • Whatever you do, Don't diet to lose weight. Low calorie diets are just not good for us. We need the calories! Don't cut out fat - you need good fat like coconut oïl, avacados, nuts, olive oïl - and make sure you get enough salt - the adrenals need salt and the poor things have been working so hard since you started going hypo!

    Don't over-exercise, either. As a nurse, I'm sure you get plenty of exercise just walking round the wards. Do not then go to the gym after work! Exercising uses up our T3, and leaves us even more hypo. Besides, it isn't going to make you lose weight, but might make you put more on!

    The weight will come off when your FT3 is optimal. And optimal is when you start losing weight - well, when your symptoms resolve. But as weight-gain is a symptom, it will be when you start losing weight. It's not a number on a blood sheet!

    Do get your nutrients tested, as HB said. And do supplement them. Your doctor will probably say they are all 'perfect' if they are just 'in range'. But it's where in the range they fall that counts. For example, B12 is optimal at 1000, no matter what the range is, and anything Under 500 can cause irreversable neurological damage.

    And you need them all to be optimal for your body to be able to use the thyroid hormone you are giving it. To be able to convert the T4 (Levo) into T3, which is the active hormone, and for your body to then be able to absorb the hormone into the cells. Nutrition is far more important than any doctor will ever admit.

    Take care. :)

You may also like...