Not quite sure : I was recently diagnosed by my... - Thyroid UK

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Not quite sure

Abrue profile image
11 Replies

I was recently diagnosed by my gp with hypothyroidism and sent to an endocrinologist who then diagnosed me with hashimotos. I was put on 112 mcg of levo and had blood work done yesterday and have just got a call back saying my levels were off and I am being decreased to 88 mcg of levo. I'm in my early twenties and am confused if this decrease will mean weight gain? I have had eating disorders in the past and weight is a very touchy thing to deal with. not quite sure where I was going with this I'm just confused and on the younger side with no experience in any of this. Any comments are appreciated. Thank you.

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Abrue profile image
Abrue
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SlowDragon profile image
SlowDragonAdministrator

First thing is, do you have any actual blood test results? if not will need to get hold of copies. You are legally entitled to printed copies of your blood test results and ranges.

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised with Hashimoto's

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Ask GP to test vitamins.

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten.

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

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

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

List of hypothyroid symptoms

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

Abrue profile image
Abrue in reply to SlowDragon

My tests from yesterday were just for TSH and free T4.

My TSH was 0.01 with a reference range of 0.45-5.33

And free T4 was 1.6 with a reference range of 0.7-2.0

SlowDragon profile image
SlowDragonAdministrator in reply to Abrue

Just testing TSH and FT4 is completely inadequate

FT4 is nowhere near top of range

FT3 needs testing

Low vitamins are likely

TSH is often poor indication of treatment levels

Abrue profile image
Abrue in reply to SlowDragon

I got off the phone with the doctors office and will be having more blood work done in six weeks. I need to Thank you for the links and advice it is very helpful.

Abrue profile image
Abrue in reply to SlowDragon

I have been having anxiety about my TSH for some reason. Does it seem to be at a dangerous level or am I working myself up over this?

SlowDragon profile image
SlowDragonAdministrator in reply to Abrue

Just testing TSH and FT4 is completely inadequate

TSH is a pituitary hormone and very unreliable once we are on Levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Abrue profile image
Abrue in reply to SlowDragon

How would you recommend bringing up a test for T3 to my doctor? I don't know how I would go about that

SlowDragon profile image
SlowDragonAdministrator in reply to Abrue

Due to budget cuts NHS GP is rarely able to test FT3 unless FT4 and TSH are significantly out of range

Essential to test vitamin D, folate, ferritin and B12 levels, frequently far too low with Hashimoto's

Low vitamins frequently lower TSH

Ask for coeliac blood test and vitamin tests

Getting vitamins optimal can improve conversion of FT4 to FT3

Gluten free diet is often extremely beneficial

Judithdalston profile image
Judithdalston

Try to get all your blood tests’ results and ranges from the doctor( both the original diagnosis tests with antibodies etc, and more recent tests) , your surgery’s receptionist should be able to print this out for free....then you should get a better idea why your levo. was reduced. Do you know if you had your ferritin, folate, b12 and vit D tested too? Hashimoto’s is characterised by poor gut absorption and consequently low nutrient levels yet we need those 4 vits/ mins at optimal level ( upper end of ranges) for good thyroid health and conversion. If you have high Antibodies you might find going gluten free, even dairy free, for 2-3 months might reduce them, and limit Hashimoto’s ‘flares’ when thyroid hormones unpredictably fluctuate up/ down. In theory if your replacement thyroid hormone dosing is correct you should find weight control ok, but weight problems ( up , and less so down) do seem to be a regular problem symptom on the forum!

Abrue profile image
Abrue in reply to Judithdalston

I have been cutting down on dairy and gluten almost no gluten now. The bloating and discomfort are much better now. I went to the doctor just yesterday and in two months have lost around 5-7 lbs I feel like I should have lost more but also trying to be happy I have lost any. Hoping that the reduction dosen't cause any gain.

SlowDragon profile image
SlowDragonAdministrator in reply to Abrue

Gluten free diet does need to be absolutely strictly gluten free to be most effective

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally you would have asked GP for coeliac blood test first or buy test online for under £20, just to rule it out first

But now you are on largely gluten free diet, there's no point going back on gluten. You already know it is helping reduce symptoms

Assuming coeliac test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

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