Fed up

Hi, I was diagnosed with hashimotos back in April and was put on 50mcg levothyroxine and then it was increased at the end of May to 100mcg. I still feel really tired and depressed and sometimes suffer from nausea. It just feels like my body is shutting down. The latest blood results are as follows:

TSH 3.30 (0.35-4.5)

Free T4 16.7 (11-26)

Free T3 3.9 (3.5-6.8)

Antibody test was done at end of June and that was:

Thyroid peroxidase ab 402 (normal range under 50)

Thyroglobulin ab 2274 (normal range under 115)

All other tests showed normal except for vit d which I have been taking supps for and just re-tested and awaiting results.

Can anyone help with this as my quality of life is so poor at the moment and I'm not the person I used to be.

Many thanks

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  • Tristy You are undermedicated. The aim of a treated hypo patient generally 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. You should ask for an increase in dose and to evidence this take a copy of Dr Toft's article in Pulse magazine for doctors in which he stated

    "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)."

    Dr Toft is past president of the British Thyroid Association and leading endocrinologist.

    You can obtain a copy of the article from louise.roberts@thyroiduk.org print it and highlight question 6 to show your GP.

    **

    Thyroid peroxidase ab 402 (normal range under 50)

    Thyroglobulin ab 2274 (normal range under 115)

    Your high antibodies mean that you are positive for autoimmune thyroid disease aka Hashimoto's which is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results.

    You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

    Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.

    stopthethyroidmadness.com/h...

    stopthethyroidmadness.com/h...

    hypothyroidmom.com/hashimot...

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

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

    **

    What are the results of your 'other tests' because normal is an opinion. As far as vitamins and minerals are concerned, optimal levels should be aimed for because thyroid hormone can't work otherwise.

    What was your Vit D level and what were you prescribed?

  • Thanks Seaside Susie, i wasn't given the results of the other tests so I will get them and post asap. I think the vit d result was 30 (70-200) and I was told to take 1000iu daily.

    Re the increase in Levo, will they increase it by 25mcg? That wouldn't make me overmedicated would it?

  • Re the increase in Levo, will they increase it by 25mcg? That wouldn't make me overmedicated would it?

    The increase should be 25mcg, increases should be done gradually. It's very unlikely to make you overmedicated, in fact you may need a couple of increases to get your TSH down to 1. All you need to worry about is keeping FT3 in range, Dr Toft states that a suppressed TSH and over range FT4 is acceptable but FT3 needs to stay in range.

    Bear in mind that the antibody attacks can cause hypo > hyper swings which are temporary and if/when these happen a temporary adjustment can be made to your dose, then readjustment when the antibodies settle down again and you go hypo.

    **

    I think the vit d result was 30 (70-200) and I was told to take 1000iu daily.

    If you can check that it would be good. If your result was actually 30 then you should be on loading doses, but I wont post any other information until you confirm your level and dose other than -

    There are important cofactors needed when taking D3

    vitamindcouncil.org/about-v...

    D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems.

    D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.

    Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds

    naturalnews.com/046401_magn...

    Check out the other cofactors too.

  • Thanks, I just have one more question. How long do the antibody attacks last for (e.g. hours, days, weeks) and is that what is making me feel very nauseous at times? Or is the nausea because I am undermedicated? Thank you so much for your help, really appreciated.

  • Sorry Tristy I'm not Hashi's so have no experience.

  • These are two links for info re Hashi's.

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

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

  • Thanks shaws.

  • Hi SeasideSusie,

    I showed the GP the Pulse Article and she agreed to increase my Levo which was good.

    Here are the blood results taken when I was diagnosed:

    White Blood Count 4.2 (4-11)

    RBC 3.86 (3.5-5.5)

    Haemoglobin estimation 136 (115-165)

    Haematocrit 0.4 (0.37-0.47)

    MCV - 104.7 (75-105)

    MCH - 35.2 (26-35)

    MCHC - 336 (290-350)

    Platelet Count (150-450)

    Ferritin - 124 (15-250)

    Lymphocyte Count - 0.7 (1-4)

    Vitamin D - 31 (75-200)

    Thanks

  • Tristy Well done on getting your increase, hopefully it will make a difference. Don't forget you'll need retesting in 6 weeks time and maybe a further increase if you're still symptomatic. Make sure you book the earliest appointment of the day for your thyroid tests, fast overnight (water allowed) and leave off Levo for 24 hours. This gives the highest possible TSH which is needed when looking for an increase in dose or to avoid a reduction. Do it every time to enable you to compare results accurately.

    **

    Looking at those results, they seem to be fine.

    Low lymphocyte count can mean a viral infection.

    Ferritin is good.

    Vitamin D - 31 (75-200) - 1000iu daily

    You need far more than this. In fact, you are just 1 point away from where the NICE Clinical Knowledge Summary says you should be given loading doses so it may be worth mentioning this to your GP

    cks.nice.org.uk/vitamin-d-d...

    Treat for vitamin D deficiency if serum 25-hydroxyvitamin D (25[OH]D) levels are less than 30 nmol/L.

    For the treatment of vitamin D deficiency, the recommended treatment is based on fixed loading doses of vitamin D (up to a total of about 300,000 international units [IU]) given either as weekly or daily split doses, followed by lifelong maintenance treatment of about 800 IU a day. Higher doses of up to 2000 IU a day, occasionally up to 4000 IU a day, may be used for certain groups of people, for example those with malabsorption disorders. Several treatment regimens are available, including 50,000 IU once a week for 6 weeks (300,000 IU in total), 20,000 IU twice a week for 7 weeks (280,000 IU in total), or 4000 IU daily for 10 weeks (280,000 IU in total)."

    If your GP wont give you loading doses then my suggestion is to take D3 softgels like these bodykind.com/product/2463-b... and take 10,000iu daily for 6-8 weeks then retest, privately if necessary. When you've reached the level recommended by the Vit D Council - which is 100-150nmol/L - you'll need a sensible maintenance dose which may be 2000iu daily, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk/

    Don't forget the important cofactors mentioned in my reply above.

  • Thanks SeasideSusie.

  • So you have been diagnosed as having high antibodies so this is Hashimoto's, (also known as autoimmune thyroid disease). About 90% of hypothyroidism in UK is due to Hashimoto's.

    Many medics are totally confused or don't understand it

    The idea of taking thyroxine is to lower TSH to low in range, around one. You are under medicated to have TSH of 3.3.

    What are you actual vitamin test results for vitamin D, folate, ferritin and B12

    How much vitamin D are you now taking? Good idea to also take magnesium too

    Hashimoto's affects the gut, very often leading to low acid, low vitamin levels and leaky gut.

    As you have Hashimoto's then hidden food intolerances may be causing issues, most common by far is gluten. Changing to a strictly gluten free diet may help reduce symptoms and eventually start to lower antibodies. Very very many of us here find it really helps and is essential to be gluten free

    thyroidpharmacist.com/artic...

    amymyersmd.com/2017/02/3-im...

    chriskresser.com/the-gluten...

    Low stomach acid can also be an issue

    Lots of posts on here about how to improve with Apple cider vinegar or Betaine HCL

    thyroidpharmacist.com/artic...

    Other things to help heal gut lining

    Bone broth

    thyroidpharmacist.com/artic...

    Probiotics

    carolinasthyroidinstitute.c...

    Great film definitely shows why just testing TSH is inadequate

    drbradshook.com/understandi...

    Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take on waking, but it may be more convenient and possibly more effective taken at bedtime

    verywell.com/should-i-take-...

    Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription.

    All thyroid tests should be done as early as possible in morning and fasting and if taking Levo don't take it in the 24 hours prior to test, delay and take straight after.

    Only make one change at a time.

  • Thanks SlowDragon,

    I will obtain the other results and post them asap. I'm taking 1000iu vit D daily.

  • 1000iu is unlikely to be enough.

    Post your previous vitamin D test result

    Most with Hashimoto's need 2-3000iu as maintenance dose. More like 5000iu to actually increase levels

    You will need to test twice a year March and oct ideally until work out what you need to stay around 100 nmol/l

    May need more in winter than summer

    Vitamindtest.org.uk £28 postal test

  • Thanks SlowDragon. Is it ok to take 3000iu. The packet says do not take more than recommended dose of 1000iu. Just wanted to check.

  • Yes look through posts on here. Lots of posts about vitamin D.

    You can buy a vitamin D mouth spray in 3000iu or 1000iu or 5000iu - by Better You. This avoids gut issues

  • Thanks SlowDragon

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