Not the symptoms of hypothyroidism according to... - Thyroid UK

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Not the symptoms of hypothyroidism according to endocrinologist as tsh levels are normal!!!!!

lorilou107 profile image
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It's mad isn't it. Why would a goitre have suddenly appeared unless I was hypo and the body hasn'tbeen making enough thyroxine so it's pushed the thyroid to make more which is why it's sticking out now. When the endo told me that I can't have hypothyroidism because my tsh levels are normal and he thinks the tingling and numbness in my fingers is completely unrelated I lost any faith I had that I was going to get treatment. I askedif he would consider a trial of medication as I felt so unwell but he said I Don'thave symptoms of hypothyroidism! !! Really!!!! What, weight gain, constipation to the point of hardly ever being able to go, feeling freezing cold, boiling hot, tearful at the drop of a hat, brain fog, extreme fatigue, nails brittle, joint pain, oh and a large goitre. .. but no, the tsh levels were normal aghhhhhhhhh oh and my dad is hypothyroid and takes levi.

The only results I was given was 1st blood test before goitre TSH 4.9 T4 9.1 2ND TEST AFTER GOITRE 2 weeks later TSH 3.6 T4 9.6

Why will no one in the profession listen to me

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shaws profile image
shawsAdministrator

The reason the professional has responded in the way he has is that he is totally ignorant of any clinical symptoms whatsoever and assumes that because the ridiculous guidelines that the UK (BTA) have advise that we cannot be diagnosed until the TSH is 10+ - they must be the laughing stock of the world.

In other countries we are diagnosed with a 3+ TSH but the BTA have directed that until our TSH reaches 10, we cannot be hypothyroid. You really couldn't make up a story like that.

Tell your GP you will have to source your own thyroid hormones as you've had advice from the NHS Choices for dysfunctions of the thyroid gland (Thyroiduk.org.uk) and give him a copy of the following (tick off your symptoms).

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

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

Clutter profile image
Clutter

Lorilou,

Goitre isn't just a hypothyroid thing, hyperthyroid patients develop goitre too. However, TSH > 2.0 indicates your thyroid is beginning to fail. Make sure you ask for lab ref ranges when you have blood tests as it will enable you to see how far off top or bottom of range your results are. NHS won't usually diagnose hypothyroidism until TSH is over range or FT4 below range.

The symptoms of hypthyroidism are "non-specific" ie could be due to a number of factors. It's disingenuous to claim they are non-thyroidal when TSH is high in range though. As you have been told they are non-thyroidal ask your GP to test ferritin, vitamin D, B12 and folate. Low/deficient levels can cause fatigue, hairloss, tingling and numbness in extremities, joint and bone pain.

The thyroid UK site has both links to a few different private labs for testing. Check it out as they test for much more than you have results of now (free T3!! And nutrient levels Ferritin, folate, B12 and Vit D - all sooo important to have) You can also contact them via email for a list of private "thyroid friendly" docs - perhaps there is one in your area? Worth investing the time and effort I'd say!

Make sure your blood draw is first thing AM after fasting (water OK) and no Levo (or any hormone) for 24 hours before testing as this will scew results. Hopefully this gets you started... 😏

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