I'm new with Hashimotos and frustrated

Hello everyone, firstly I just wanted to say what a relief it is to find a support network and so much first hand experience. I was diagnosed in October 2016 with Hashimotos and have been trying to work out how to get back to normal ever since.

I was started on a dose of 50mg levothyroxine and had TSH level of 15 (I don't remember what my T3 and T4 levels were but I know they were wrong). I had awful brain fog and was so exhausted I couldn't work. I've improved massively since then and was told to have a check up 3 months later, which was last week.

My new results are T3 and T4 in normal levels (though I don't know what as I the Doc didn't share that info) but TSH is 8.9. This is very disappointing as my husband and I would love to start trying for a baby but have been advised not to do this until TSH is under 2. My dose has been upped to 75mg a day and this will be reviewed in 6 weeks. I currently feel awful (though not as bad as I was) - really tired, struggling to concentrate and oddly teary/emotional. I'm hoping that this is will settle after I get used to the new dose.

There's so much new information to get my head around and I'm wondering the best direction to go in, if anyone is able to advise on any of the below I would be extremely grateful.

1. From reading other posts it seems best that I request a copy of all my tests and keep a copy myself, is this easy to do? I'm guessing I just request from the Dr's receptionist?

2. I've read that there is a link between Hashimotos and gluten, have people found this generally to be true? I'm not sure I can face gluten free entirely but was thinking of reducing my intake to see if that helps.

3. Although the GPs I see are generally good and seem clued up on thyroid issues (but what would I know?) I was wondering about trying to get a referral to an endocrinologist to discuss it all thoroughly and check I'm definitely managing this all in the right way. Has anyone done this and if so was it useful?

Thanks all and apologies for all the questions/ranting. It just all feels a bit overwhelming.

5 Replies

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  • Welcome to the forum, Alexandra987.

    It is recommended that the TSH of women planning conception should be in the low-normal range 0.4 - 2.5. Dose is usually increased by 25-50mcg when pregnancy is confirmed to ensure good foetal development and reduce the risks of miscarriage and post-partum psychosis.

    cks.nice.org.uk/hypothyroid...

    Hypothyroidism is usually managed in primary care. Ideally you will have a thyroid function test 6-8 weeks after every dose adjustment until your TSH is 1.0 or lower. Arrange an early morning and fasting (water only) blood draw when TSH is highest, and take Levothyroxine after your blood draw.

    The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 1.0 or lower with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.roberts@thyroiduk.org.uk if you would like a copy of the Pulse article to show your GP.

    If you have Hashimoto's 100% gluten-free diet can help reduce flares, symptoms and eventually antibodies. The gliadin in gluten can cause inflammation so there is no point in reducing gluten consumed it needs to be avoided completely.

    chriskresser.com/the-gluten...

    thyroiduk.org.uk/tuk/about_...

    You can ask your GP receptionist for a printout of your results and ranges. Test results within 40 days of test may attract a nominal fee of £1/£2 to cover the cost of printer ink and paper. Tests older than 40 days may attract a fee. Alternatively ask to make an appointment to view your records online and make a note of your results and ranges. You can obtain a copy of your entire GP medical record for £50.

  • Alexandra987 Hello and welcome. Well done on already reading and understanding about your condition. The first thing to say is..... be patient :) , it takes time.

    To answer your questions:

    1) Easy to request your results, hopefully your surgery is helpful. Just ask the receptionist for a print out and make sure you get the reference ranges - very important as these vary from lab to lab. It is your legal right under the Data Protection Act 1998 so they can't refuse. Some surgeries like to be a bit awkward so you can do a couple of things if they don't want to give them to you without a fuss

    a) Ask to see the screen and write them down yourself

    b) Ask them to write them down for you - make sure you get the name of the test, result and reference range

    c) Remind them that it is your legal right and that you are sure they wouldn't like to break the law

    d) Put in a subject access request where you'd have to pay for a copy of your medical records and it would take a few days.

    So now you know they can't fob you off! Keep a record at home, maybe on a spreadsheet - date, test, result, reference range, what meds and dose, how you feel. This will be useful in the future for comparison.

    2) Most people with Hashi's have found that they need to be strictly gluten free. Reducing doesn't cut it. Gluten contains gliadin which is a protein thought to trigger antibody attacks.

    Gluten/thyroid connection - chriskresser.com/the-gluten...

    Info about Hashi's -

    stopthethyroidmadness.com/h...

    stopthethyroidmadness.com/h...

    hypothyroidmom.com/hashimot...

    thyroiduk.org.uk/tuk/about_...

    Also, supplementing with selenium - L-selenomethionine - 200mcg daily is supposed to help reduce antibodies. Brazil nuts, often suggested, don't contain selenium unless they are grown in selenium rich soil which will be stated on the packet if they are. Easiest way to ensure you get the right amount of selenium is to supplement.

    3) Most endos are a thorough disappointment, occasionally a patient will get a clued up one. Most endos specialise in diabetes and don't know much about thyroid. It's unlikely you'll get a referral from your GP, and if you really want to go down that route and pay to see one privately then ask for recommendations from members for any in your area who are thyroid friendly.

    The aim of a treated hypo patient is for TSH to be 1 or below or wherever it is needed for FT4 and FT3 to be in the upper part of their respective reference ranges if that is where you feel best. For pregnancy you need TSH to be below 2 and I believe Levo is raised during pregnancy but hopefully someone who knows more about it will come along and advise.

    You will probably need a couple more increases in your dose before you reach your optimal level. For thyroid tests, always book the very first appointment of the day, fast overnight (water only) and leave off Levo for 24 hours (take after the test). This gives the highest possible TSH which is what you need when looking for an increase in dose or to avoid a reduction. Always follow up with a re-test 6-8 weeks later to see where your levels then lie. Don't let your GP dose by TSH alone, you must emphasise what symptoms you still experience and how it affects your daily life.

    It would be a good idea to test nutrients, low levels of vitamins and minerals mean that thyroid hormone can't work properly. Ask for the following and aim for these optimal levels:

    Vit D - recommended is 100-150nmol/L

    B12 - recommended is very top of range, even 900-1000. Anything under 500 can cause neurological problems.

    Folate - should be at least half way through it's range. Works together with B12.

    Ferritin - should be half way through it's range, with a minimum of 70 for thyroid hormone to work properly. I've seen it mentioned that females should have a level of 100-130.

    If your GP wont do them, come back and we can suggest where you can get them done with a fingerprick test at home.

    Anything else, just ask. Plenty of members here to help :)

  • Thank you Clutter and SeasideSusie for your detailed responses, I really appreciate them! I had no idea that gluten could be such an important factor, my Doctor never mentioned this so it's good to know. I'm going to try giving it up 100% as you suggest and see what happens.

    Thanks again.

  • Doctors don't know (generally) and like to poo-poo it. Same as they know nothing about nutrients. You will get far more help from the forum - shouldn't be that way but there it is :(

    Some people have found that gluten free helps quite quickly, others have found it takes a while longer. It's worth sticking with it. Some people need to be dairy free, but one step at a time.

  • Welcome to our forum Alexandra987. It is a big learning curve for us, patients. I am assuming you are newly diagnosed, ie. began on 50mcg of levothyroxine and had 25mcg increment to 75mcg. 25mcg should be the incremental dose until you feel well - not stopped due to your TSH level which many doctors wrongly believe. (That's what they've been taught).

    For a good pregnancy I believe a TSH of around 2 is recommended. Also some people miscarry but I'll give you a link which might be helpful.

    First blood tests should be the very earliest possible, fasting, you can drink water. Allow 24 hour gap between last dose of levo and test and take afterwards.

    Levothyroxine should be taken first thing with a full glass of water and wait about an hour before eating.

    Some prefer bedtime doses, in that case you should have last eaten about 2.5 to 3 hours.

    Always get a print-out of the results with the ranges and post for comments.

    thyroiduk.org.uk/tuk/search...

    web.archive.org/web/2010103...

    hypothyroidmom.com/married-...

    hypothyroidmom.com/hypothyr...

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