thyroid test results and dealing with surgery

[Libuse]

I could do with a bit support, please! I was diagnosed with Hypothyroidism last December with TSH of 67.9 and prescribed initially 25 mcg of levothyroxine gradually increased to 75mcg which was appropriate for my weight of 48 kgs. I was given blood tests every 8 weeks until:

August 25 th TSH 0.68 (0.27- 4.2)

T4. 16.9 (10.5-24.5)

When I viewed the results on line, the comment was ‘No action required’. Fair enough but about a month ago I began to feel shaky and anxious again, also poor balance and freezing cold, suffering from vague headache.

So after 8 weeks had lapsed, I requested a new thyroid test and was initially refused as the August results were very good. I had to get angry to receive form and afterwards felt very upset. This morning I read these results on-line:

November 2nd. TSH 2.13 (0.27-4.2)

T4 16.1 (10.5-24.5) Comment- no action required

Back to the surgery. On-line appts. system down so I phone receptionist who tells me my results are normal and I don’t need to speak to anyone. I insist and she insists, I had to get anngry again to get the assurance that I will be texted within 2 days with date for telephone appointment.

I feel in despair at the thought of trying to convince a medical practitioner that I don’t feel well and that my TSH needs to be under one for me to function happily. My situation is compounded by the fact that after suffering cancer of oesophagus 16 years ago, I cannot project my voice very well especially on the phone.

I know I am not alone and without the support of this group I don’t know where I’d be! I suppose I just want to let off steam to people who will understand and empathise. Thank you for reading X

[greygoose]

I requested a new thyroid test and was initially refused as the August results were very good.

No they weren't. Your FT4 was below mid-range. Most hypos need it more like three-quarters of the way through the range. Your doctor was happy with those results because the TSH was nicely in-range, but TSH is a very poor indicator of thyroid status once it gets down to 1 and under. Now it's too high. A euthyroid (i.e. not thyroid problems) TSH is around 1 never over 2, and hypos usually need it lower than euthyroid levels because they need their thyroid hormones - T3 and T4 - higher than euthyroid levels. This is something that doctors just cannot understand - although lord knows, it's simple enough!

[Libuse in reply to greygoose]

Thank you Grey Goose

[greygoose in reply to Libuse]

You're welcome.

[SlowDragon Administrator]

Just testing TSH and Ft4 is completely inadequate but all NHS tends to do

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Is this how you did your tests?

Request GP test vitamin D, folate, ferritin and B12 and request retest including Thyroid antibodies and Ft3 alongside TSH and Ft4

Or test privately

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

See detailed reply by SeasideSusie

healthunlocked.com/thyroidu...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

[Libuse in reply to SlowDragon]

Thank you Slow Dragon

[1tuppence]

Libuse, you've received great advice from greygoose and SlowDragon.

Here's a hug, or two or three xx

[Libuse in reply to 1tuppence]

thank you 1 Tuppence