Newbie saying hi

Hi I am new. I am 31 years old and was diagnosed with hypothyroidism 5 years ago. It has been very hard for me to deal with and family and friends don't really seem to understand. My health has really gone downhill because of the effect it has had on my life and I have just come here for advice and just to communicate really. I currently take 150mcg Levo but endo and doctor say results are perfect but I don't feel perfect in fact far from it. My stools are hard, periods are shorter but still clotty, I am tired, I get headaches, skin is pale and ice cold, skin is dry and getting blotchy, I am anxious, getting a tremor and my heart feels like it flip flops in my chest. My family history is unlucky in terms of health, cancer, diabetes, cardiovascular problems, autoimmune. So it would be nice to hear from other people and get advice.

TSH - 2.01 (0.2 - 4.2)

Free T4 - 15.7 (12 - 22)

Free T3 - 3.1 (3.1 - 6.8)

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18 Replies

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  • Hi nice to, meet you. Ifelt a great relief finding this site it's brill. I felt really alone and didn't understand my thyroid problem when I found out. It took me twenty years to know to take my tablets roughly same time every morning on an empty belly with just water for at least half hour taking meds. Just by doing this I managed to reduce my meds by twenty five mcg.

    Do you know your blood results? I never did till this site. It's amazing how many people here who can correctly interpret them.

    Your not alone here I'm not sure if non sufferers really have any idea how serious our disease is or how important our medication is to us x

  • Hi and thanks, nice to meet you too. I edited my post to include my results. I am sure I have had problems since I was young, just that my family and I never made a point to go to the doctor about them.

  • When your younger so much is going on its hard to understand what's going on sometimes I can relate to what your saying.

    What time of day was your bloods taken? I didn't know till here an early appointment and no food in the morning just water till after they are done was how we are meant to do our bloods x

  • My bloods were taken about 8:45-9:00 am I think

  • Hi Elizabet and welcome. A rather common story I'm afraid, it really does make you wonder whether these doctors wear blinkers, we can look so dreadfully unwell but they don't seem to see it.

    It's easy to see that you are undermedicated. The aim of a treated hypo patient is generally 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.

    Dr Toft, leading endocrinologist and past president of the British Thyroid Association, states in Pulse Magazine:

    "The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

    In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

    But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

    This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

    You can obtain a copy of the article by emailing louise.roberts@thyroiduk.org.uk and you can show it to your GP to discuss how your results are not perfect!

    You need an increase in your dose to bring your TSH down, raise your levo but in particular to increase your dire FT3 level. T4 (which Levo is) is a pro hormone and is inactive. It has to be converted to T3 which is the active hormone which every cell in our bodies need. So you need to get your FT3 into the upper part of it's range. This can be done by increasing Levo, which if your conversion is good enough, will increase FT3. If your conversion is poor then FT3 will remain low in comparison to your FT4 and adding T3 to your Levo would be a good idea. You would need an endo to prescribe T3 but unfortunately it's becoming increasingly difficult to get T3 prescribed.

    It would be a good idea to get the following tested, if not done already:

    Vit D

    B12

    Folate

    Ferritin

    We Hypos need optimal levels for thyroid hormone to work properly. Post any results, with the reference ranges, for members to comment.

  • Hi and thanks I have all these results so I will post them.

  • Hi and welcome. You are under-medicated and require a higher dose - the aim with treatment is to have TSH of 1 or under, with FT4 near the top of range and FT3 around 70%+ through range. Others have good references for these and I am sure will be along shortly.

    There are other blood tests that you really should have to fully understand your condition.

    They are thyroid anti-bodies TPoab and TGab to see if you have Hashimoto's auto-immume as well as thyroiditis, folate, ferritin, vit D and vit B12. All these need to be at a fairly high level (not just in range) to ensure that you can use any thyroxine (own or medication) effectively. If your GP won't test these then private tests are available through Blue Horizons or Medichecks. If you get results then post these with ranges and members will be able to advise more specific actions for you.

    There is hope - after some very good advice and a private test followed by some supplements and going gluten and dairy free over the last 8 months,I am now feeling 100 times better - I had all the symptoms you have and then some - and indeed feel better than I have for about 20 years (I am 48). What it needs for recovery is a bit of commitment and being prepared to take control of and responsibility for your own health, possibly working a bit independently of your GP.

    Good luck,

    Gillian xx

  • Hi I have all these results so I will post them.

  • Hi - if you post them in a new thread, together with the thyroid results you gave above, we should be able to give you more specific advice. xx

  • Like Gillian,

    I could not have made progress without all the excellent help on here.

    I am truly astonished at the vast improvements achieved after going strictly gluten free, improving low nutrients and more recently giving up ALL soya (including soya lecithin - in most chocolate 😒)

    Really important to get both types of antibodies tested to establish if you have Hashimoto's

    Excellent free web based document-series - re-running, starting March 1st

    Masses of advice for all thyroid issues, but especially for Hashimoto's or Graves

    thethyroidsecret.com/trailer/

    chriskresser.com/the-gluten...

  • Elizabet, levothyroxine needs to be taken on an empty stomach with water only. Either take it first thing in the morning and don't eat anything afterwards for an hour or take it at night before bed provided you have not eaten anything for about 3 hours prior to.

    You are on a reasonably high dose but your blood test results look low.

  • Thanks I do take my thyroid meds at night before bed but I don't eat or drink anything for a few hours beforehand.

  • sorry but your endo and gp are totally and utterly wrong

    your results are not perfect

    your tsh should be 1.0 or below and your freet4 and free t4 should be both in balance and near top of their ranges ...your t3 is right at the bottom

    this is likely to be because you are unable to convert the levothyroxine T4 into t3 which is what every cell, needs to function

    normally this is because

    ferritin

    folate

    b12

    vit d3

    are below halfway in their ranges

    so ask your gp to check them and once we know those results we can move fwd

    meanwhile be very very sure to take at least 2000 mg vit c spread through the day

    this will start to help the constipation etc

  • Usual advice on ALL thyroid tests, is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) don't take Levo in the 24 hours before (take straight after). So if you normally take at bedtime, delay till after test.

    This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible

  • There are other do's and don'ts as well that may effect you so look on the Thyroid Uk site and loads of info you may find useful. Doctors aren't very good on telling you the basics I'm afraid and yours are shocking letting you think your results are ok. They have just scraped into the range but most other countries have a narrower range, ours is very wide and most of us feel better towards the top of the ranges.

  • Hi Elizabet totally know what you mean about friends and family, oh my gosh i have heard it all, even my dr called me a fat depressed menopausal woman! friends who got bored by me being ill and no longer being the life of the party, iv had strangers ask if my weight bothered me. My husband was awful and said i was addicted to pain killers and just slept all the time! my mum was embarrassed that i was the first fat person in our family! lots of it hurt at the time but now i just laugh. Friends and family now have a better understanding of this illness after meeting others and reading peoples stories and that it wasnt just me!

    I went from being a vivacious, outgoing, fit, strong sporty woman with a top career to bed bound within 6 years of my thyroid being removed. The only help and support came from this group and a local one i belong to. I am not yet back to who i was but a million times better than i was, i am a work in progress.

    Your post has really had an effect on me as i know how you feel. Drs telling you, you are fine when you are not, is soul destroying, stick with this group they will help you and share their experiences.

    Your feeling 'I am anxious, getting a tremor and my heart feels like it flip flops in my chest.' is common feeling. When i started meds i was so un use to having a strong heartbeat i thought i was having palpitations. I was advised to time my heart beats, which turned out to still be low. sometimes i felt so hot i was burning up but when i took my temp i was still very cold. What im trying to say is the anxiety is frightening but doing the checks can give us perspective. More informed people will help you with your results, further testing etc.

    You will start to feel a lot calmer, i am sending you love xx

  • Hi Binkie, hi Elisabet -

    no advice, just adding to your stories, maybe it makes just person laugh or feel a hint better at not being the only one:

    I never believed in FFF (fat, forty, female) until I, too, was treated like one...

    At 30 I was told to go home and lose weight --- turns out I had a massive ovarian cyst that caused pain and stomach bulge. I had an emergency op six weeks later in another country.

    My father in law called me a 'heiffer' when I went from a size 10 to a 12 (I am tall and didn't feel big) at the beginning of thyroid and pituitary problems thirty years ago.

    My mother in law to this day tells my husband that my hashimoto's, hypoadrenalism, pituitary tumour etc are self-diagnosed and made up, that I am just too lazy.

    I have more, but I just wanted to send out understanding sympathy. As if dealing with being ill wasn't enough!

  • Hey you guys, I'm living in Germany and I am new here too sort of...was missed diagnosed 4 years ago and told I had Vasculitis and joined another group and thought I was slowly dying....talk about stress. Ok so after learning more than my doctor I left her and found a functional doctor...world of difference. So for the last 2 years I have been recovering and feel amazing but found this site due to a symptom I had...peeling hands!!!!!!! Saved and now not going crazy...my meds were too low so kicked them up a few grams and hoping that takes care of it...will let you know. The real deal for my healing was going gluten, soy and dairy free. I lost the weight, grew hair, stopped sleeping 14 hours and feel amazing. I started a website for gluten, dairy and soy free living. Plus I do cooking classes and home visits to help transform your cooking. It might inspire some of you who have not taken this critical leap to healing. Check it out!! God I found you all! thecookncoach.com

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