Hashimotos

Hi all,

I was diagnosed with hashimotos about ten years ago when I was 20. It has always swung hyper and hypo, very dramatic and frustrating swings. I've also been having lots of problems with palpitations and arrhythmia.

My question is, how often do fellow hashimotos sufferers have their thyroid levels checked? My new doctor is adamant I only need them doing once every six months but I don't feel this is enough based on my fluctuations.

Thanks

10 Replies

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  • Mine is same with added graves disease. Was referred from doctor to specialist they even worse than doctors. Called me once told them what's wrong and they told me to do blood test. Not hurd nothing since.

  • Most people with Hashimoto's on levo need low TSH around (or even slightly below) 1 to be adequately treated. Do you have your latest blood test results.

    If they have not been done ......Suggest you ask GP to check levels of vitamin d, b12, folate and ferratin. These all need to at good (not just average) levels for thyroid hormones (our own or replacement ones) to work in our cells

    ALWAYS Make sure you get the actual figures from tests (including ranges - figures in brackets). You are entitled to copies of your own results. Some surgeries make nominal charge for printing out. Alternatively you can now ask for online access to your own medical records. Though not all surgeries can do this yet, or may not have blood test results available yet online.

    When you get results suggest you make a new post on here and members can offer advice on any vitamin supplements needed

    If you can not get GP to do these tests, then like many of us, you can get them done privately

    thyroiduk.org.uk/tuk/testin...

    Blue Horizon - Thyroid plus eleven tests all these. £99

    This is an easy to do fingerprick test you do at home, post back and they email results to you couple of days later.

    Usual advice on ALL thyroid tests, (home one or on NHS) is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) If you are taking Levo, then don't take it in 24 hours before (take straight after). 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

    As you have Hashimoto's then you may find adopting 100% gluten free diet can really help reduce symptoms, and lower antibodies too.

    Selenium supplements can help reduce antibodies and improve conversion of T4 to T3

    You do not need to have ANY obvious gut issues, to still have poor nutrient absorption or low stomach acid or gluten intolerance

    Best advice is to read as much as you can. Vitamin and minerals levels are very important, but standard NHS thinking, doesn't at the moment seem to recognise this. You will see, time and time again on here lots of information and advice about importance of good levels of B12, folate, ferritin and vitamin D, low stomach acid, leaky gut and gluten connection to autoimmune Hashimoto's

    hypothyroidmom.com/92-of-ha...

    news-medical.net/news/20110...

    chriskresser.com/the-gluten...

    chriskresser.com/the-thyroi...

  • I don't understand mine at all doctor says I'm hypa under active. But all my symptoms are of an over active hypo. Thats why I know I am both. Then added to that is my graves. So depressed my body is all over the place. Brains always over active running 90mph while body is struggling to keep up going 39mph

  • 30 mph levothyroxine is not helping at all.

    Told hospital about hashimoto the doc there said it's just someone's name means nothing. Am fed up of going doctors and hospitals. So Just always on line looking for natural remedies. I will get my test results from doctors but I know my results always come back I'm under active. But I'm not putting on any weight am always cold dry skin weak bones gum disease all the symptoms of a person with hypothyroidism. 1nc 2week I take cannibis to slow my brain down. Feel like it's going to explode. Any suggestions..??

  • In order to stop the fluctuations, you need your TSH at zero. The less gland activity there is, the less antibody activity there will be. Do you have copies of your results?

    Levels should be tested six weeks after every dose increase or decrease. After that, well, depends on your doctor. If you're on a stable dose, every three months doesn't sound too bad. Some people only get tested once a year. But, if as you say, your levels are fluctuating, then every six weeks would sound wiser. But, I expect he's trying to save money!

  • Thanks so much all.

    I should probably have said that I have also been diagnosed with Graves, although my old doctor seemed confused when I challenged on how I could have hashis and graves. I'm sure my heart issues relate to my thyroid :( it's so frustrating.

    I do believe a lot of unwillingness to test is down to cost saving greygoose!

    An even stranger phenomenon is that when I take b vitamin supplements my palpitations are awful!

    Our bodies are such complicated machines!!

  • Complicated definitely mines totally screwed hypo and hypa and graves. I give up with doctors looking for natural remedies.

  • Daughters done 8 weekly as diagnosed 3/16 and had meds increase 25 mcg to 50 then 100.

  • Just in case its relevant to you, I had heart problems since a teenager, always trachycardia and irregular with heart rate 110-120 resting even when severely hypo but no one could work out why. it went up to 140-150 last year and they instantly put my thyroid meds down to try and counteract (as already reduced since becoming gluten free) but it did nothing to fix the fast heart rate and just became hypothyroid. Got treated for a vit D deficiency a month later as finally got tested for this for the first time and it magically went down to 70-80 for the first time in my life and is now quite regular. Iron deficiency also seems to give me palipatations also.

    Gluten free also helped tremendously x

  • My doctor says every 3months but depends on results of last test.

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