Confusing tsh: My first tsh was 0.05 but I have... - Thyroid UK

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Confusing tsh

BabyBelle2018 profile image
BabyBelle2018

My first tsh was 0.05 but I have been suffering under active symptoms so pituitary growth was suspected. After Mri came back all clear my tsh changed on second blood test to 38

I'm so confused with why this is does anyone know why.

I'm now treated on 150mg levothyroxine but developing OCD and BDD so due to meet endocrinologist next week.

Understanding the change in tsh will help me so any info welcome please

11 Replies

Have you had your antibodies tested? It could be that you have Hashi's, and with Hashi's levels can go from hypo to 'hyper' and back again.

I will check my list of results, what would it be named as on the blood check list? Thank you for your attention

Could be TPOab or Thyroperoxydase antibodies. :)

There is nothing on my reports with antibodies... I will ask next week when I go back for review. The endocrinologist (private healthcare and a professor)! Couldn't explain the results but said without a doubt I needed to be treated for hypo. Surely he would have ruled out hasimotos it seems really common but he never mentioned it.

Perhaps you may be able to see the link between this and my failure to progress with my labour resulting in emergency c section? Any advice appreciated

I should also mention I managed to breastfeed successfully which should rule out a few possibilities.

No, not really.

And, of course your endo probably wouldn't have tested your antibodies, anymore than he tested your FT4 and FT3, apparently. He hasn't done any of the logical tests. He's obviously a diabetes specialist that knows little about thyroid. Very, very few of them do. They especially don't understand the significance of antibodies, so rarely test for them.

SlowDragon profile image
SlowDragonAdministrator

Early stage Hashimoto's can often look like hyperthyroid with low TSH, then rapid TSH changes

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

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

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

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. So it's important to get TPO and TG thyroid antibodies tested at least once .

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_...

Always get actual results and ranges on all tests. You are legally entitled to printed copies of your blood test results

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

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

Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine

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. Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients

but developing OCD and BDD

BDD? Bodily Distress Disorder? On what grounds have you been diagnosed with that?

Body dysmorphic disorder. I have been referred to psychiatrist by my endo for this along with ocd but not yet been diagnosed as such it's just been discussed based on my behaviours and thoughts that seem to have got progressively worse. It's so hard to distinguish if my health issues are caused by life stresses or the other way around. Just feel totally out of control of my own self which is such an alien feeling since my positive mindset always got me through tough times. It's like living someone else's life!

Oh, sorry. I completely got the wrong end of the stick.

There are lots of receptors for T3 (one of the thyroid hormones) in the brain, and having low levels is not good for mental health. There are people on the forum who have had various diagnoses for mental health problems that have completely disappeared when the thyroid, nutrients and adrenal function are as close to optimal as possible. Unfortunately the majority of the endocrinologists we hear about think that thyroid is easy - test TSH, change thyroid hormone dosage accordingly and bob's your uncle. There is a lot more to it than that, but sadly many of us have to learn how to look after ourselves to a large extent.

Your endocrinologist hasn't been very helpful so far, even if he is a professor and you are paying him. I hope s/he can be persuaded to arrange more thorough testing. But to be honest, you'll almost certainly save money by following SlowDragon's advice above about doing private testing, even if you later go on to show your private doctor the results you already have. But be aware s/he might get kickbacks for getting patients to order from certain places so he may refuse to acknowledge tests you've paid for independently.

Thank you for this information! I will definitely get my antibodies checked next week. Thank you so much for your input

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