Is this normal after levothyroxine dose increase?

[Kenny12]

Just started levothyroxine (4 months) and 2 dose increases so far. Both times after initial improvements for a week or two symptoms get much worse again. The last blood tests showed both tsh and T4 had gone down. I'm so confused. I expected tsh to go down but T4 to go up? Is this normal? Will it level out eventually? I'm worried things aren't improving at all. Thanks for any insight.

[SlowDragon Ambassador]

How much levothyroxine are you taking

Please add latest results

Completely normal……levothyroxine doesn’t “top up” your own thyroid output…it replaces it

Dose is increased slowly upwards in 25mcg steps over 12-18 months or longer

approx how much do you weigh in kilo

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 always be below 2 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.

[Kenny12 in reply to SlowDragon]

Thank you. I will ask for a copy of the results. My tsh is still high but much lower than when I started. T4 is in range and higher than when I started levothyroxine but both T4 and tsh are lower after the second dose increase than after the first dose increase. It's so complicated to understand properly so I'm very grateful there are people who do understand.

[SlowDragon Ambassador in reply to Kenny12]

Make sure you get vitamin levels tested and maintain GOOD levels

Helps if you add some detail on your profile ….plus age and gender

[SlowDragon Ambassador]

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

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

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

What vitamin supplements are you taking

Also VERY important to test TSH, Ft4 and Ft3 together

What is reason for your hypothyroidism

Autoimmune?

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)

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

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

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

Only do private testing early Monday or Tuesday morning.

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

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

[Kenny12]

The hypothyroidism is post radio iodine treatment. Thank you so much for all the info.

[Caradoc1a]

I had that 12 months ago and I'm still in the process of getting it right. I didn't become hypo till 3 months after RAI. The RAI messes up vitamins and minerals too. So check your B vits, vit D and ferritin. My Endo doesn't agree that RAI could have affected my absorption of B12 but it's a radioactive pill straight to the stomach!! It's quite possible. Good luck with it all. It takes time.

[eeng]

Your experience is very common. Once you are on your full replacement dose of levothyroxine and your vitamins and minerals are at a healthy level you should find that you feel human again. Good luck!

[Kenny12]

Thank you all for the reassurance. I'll wait for a copy of the results but I don't think vitamins have been tested. I just assumed they would know the right dose at yhe start. I should ask more questions at the appointments but when you don't know much you don't know what to ask. Thank you all again.