hypothyroidism diagnosis

[Purpledog0256]

was diagnosed with hypothyroidism in October of 2024 and my PCP put me on Levothyroxine 25 mg with TSH of 11.70. Then I had another blood test in December of 2024 and my TSH went up to 38.9. So he upped my Levothyroxine to 50mg. Recently, in January of 2025 I have been having shortness of breath in my throat when I am lying down on my back. I will be seeing a thyroid specialist, but can’t get in until May or f this year and on the cancellation list. Has anyone else experienced shortness of breath when lying down?

[SlowDragon Ambassador]

See/contact GP for next test

50mcg is only standard STARTER dose levothyroxine

You are highly likely ready for next increase to 75mcg

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

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

Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune

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

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

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG 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.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

NHS only tests TG antibodies if TPO are high

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)

Essential to test vitamin D, folate, ferritin and B12

Lower vitamin levels more common as we get older

For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels

What vitamin supplements are you taking

VERY important to test TSH, Ft4 and Ft3 together

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)

Post all about what time of day to test

healthunlocked.com/thyroidu...

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

[Purpledog0256 in reply to SlowDragon]

I am 43 years old. I’m not currently taking supplements and my next blood test is February 10th.

[Purpledog0256]

how do I find out if my hypothyroidism is caused my autoimmune disease?

[GlowCoach Administrator in reply to Purpledog0256]

You need both types of thyroid antibodies tested - TPO & Tg.

Make sure to take Levo on its own, on an empty stomach, an hour before anything other than water. Its a very fussy hormone and doesnt like company.

[Purpledog0256 in reply to GlowCoach]

It’s the first thing I take in the morning on an empty stomach everyday.

[Purpledog0256]

I will make sure he checks everything next blood test. Thank you.

[SlowDragon Ambassador in reply to Purpledog0256]

Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune

Ask that thyroid antibodies, Ft4 and Ft3 and vitamins are included at next test

Come back with new post once you get results

[SlowDragon Ambassador]

Guidelines of dose Levo by weight

approx how much do you weigh in kilo

Levothyroxine doesn’t “top up” your own thyroid output, it replaces it.

Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)

cks.nice.org.uk/topics/hypo...

bnf.nice.org.uk/drugs/levot...

nhs.uk/medicines/levothyrox...

Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.

Some people need a bit less than guidelines, some a bit more

TSH should be under 2 when on levothyroxine

gponline.com/endocrinology-...

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Comprehensive list of references for needing LOW TSH on levothyroxine

healthunlocked.com/thyroidu....

onlinelibrary.wiley.com/doi...

If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).

sciencedirect.com/science/a...

The optimal daily dose in overt hypothyroidism is 1·5–1·8 μg per kg of bodyweight, rounded to the nearest 25 μg.

[CernCrystal]

Hi, I had shortness of breath but I also had a multi-nodular goitre. It wasn't very large on my throat but unknown to medics had also grown under the collar bone into my chest and two sacs were compressing my lungs. It took ages to convince them something was wrong. Instead they treated me for asthma. All went away when I eventually had it removed years later. Do see if you can get a scan that goes further than just your neck if you feel it is really impacting your breathing. Obviously your breathing could be affected by other reasons but I'd hate for anyone to suffer how I did.