Is it time to up my dose?

[tge1230]

Hi, I've been on 50mcg levo for 15 weeks now and my latest GP bloods are:

Thyroid peroxidase antibodies (TPOAb) 166 iu/mL [0.0 - 34.0] (Down from 240 before meds)

TSH level 4.64 mIU/L [0.27 - 4.2] (Down from 8.47 before meds)

FT4 level 13.9 pmol/L [12.0 - 22.0] (Up from 10.1 before meds).

The outcome was, no action needed.

I will do a more comprehensive test from one of the providers recommended on here, but need to wait for another 3.5 weeks until I've been back on Almus brand for 6 weeks.

However I have mainly felt bad - tired, low mood, with brief periods of feeling great (it's nice to remember I'm still in there somewhere). However I'd like to be able to feel great more than bad and wonder whether I should start to increase my dose?

Any advice appreciated, thank you.

[TiggerMe Ambassador]

Yes! You really need to push them to increase your dose as you are still hypo and on a child's dose, have you been adding some methylfolate to improve your levels? Don't think you've had your Vit D checked?

[tge1230 in reply to TiggerMe]

Hi, no I haven't checked Vit D yet - I'm waiting 3 1/2 weeks to do my next private test and will get B12, Folate, Ferritin and FT3 too. What would an optimal B12, Folate and Ferritin level be? Does the methylfolate only boost folate, or ferritin too and can you recommend a good supplier? Thank you.

[TiggerMe Ambassador in reply to tge1230]

Shocking really that they haven't tested your B12, folate and ferritin... I'd push for the increase and request these tests from them, no point doing a full thyroid panel when you are so under-replaced, your recent result showing you need to add 25mcg a day minimum and will likely need more

B12 aim for top of range, some like it above

Folate above 50% range ( ranges vary between labs) not much between brands I don't think? Get your folate up then switch to a B complex to support all B's

Ferritin 100 but you'd need a full iron panel to see where your levels are before thinking of supplementing

[haggisplant]

I think you would be very well within your rights to ask for a second gp opinion, especially if you describe symptoms. My gp always suggests more even when I’m around 2.5 Tsh.

an extra 25 per week should help bring down your around 1 ish. Ideally you want to be 1 or just below that. T4 upper ranges, around 19-20

[tge1230 in reply to haggisplant]

Hi, thanks for your reply. Just to clarify do you mean an extra 25 mcg per week or per day?

[tattybogle]

ye gods , "no action needed "... utter bukum (gp needs to go to specsavers , or learn to read)

current NHS guidelines clearly state that the aim of treatment is to get TSH WITHIN the reference range , yours is not....., so yes , they should absolutely increase your dose ,,, and they should be doing this automatically , you shouldn't even be having to ask :

nice.org.uk/guidance/ng145/... Recommendations#follow-up-and-monitoring-of-primary-hypothyroidism

"1.4 Follow-up and monitoring of primary hypothyroidism

Tests for follow-up and monitoring of primary hypothyroidism

1.4.1

Aim to maintain TSH levels within the reference range when treating primary hypothyroidism with levothyroxine. If symptoms persist, consider adjusting the dose of levothyroxine further to achieve optimal wellbeing, but avoid using doses that cause TSH suppression or thyrotoxicosis.

1.4.2

Be aware that the TSH level can take up to 6 months to return to the reference range for people who had a very high TSH level before starting treatment with levothyroxine or a prolonged period of untreated hypothyroidism. Take this into account when adjusting the dose of levothyroxine.

Adults

1.4.3

For adults who are taking levothyroxine for primary hypothyroidism, consider measuring TSH every 3 months until the level has stabilised (2 similar measurements within the reference range 3 months apart), and then once a year.

1.4.4

Consider measuring FT4 as well as TSH for adults who continue to have symptoms of hypothyroidism after starting levothyroxine."

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

these may come in useful , this one contains simple anecdotes (in case GP is simple ):

simple explanation of why 'TSH anywhere in range' is not the same as 'optimal for the individual ' : healthunlocked.com/thyroidu... -the-shoe-size-analogy.

once your GP has mastered the basics of 'reading', try getting then to read some of these :

healthunlocked.com/thyroidu.... -list-of-references-recommending-gps-keep-tsh-lower-in-range

[tattybogle in reply to tattybogle]

contact GP , request increase to 75mcg/ day

[tge1230 in reply to tattybogle]

Thank you. I have put a note on my repeat prescription saying I want to up my dose and requesting they give me extra tablets so I can do so. Fingers crossed?!

[SlowDragon Ambassador]

which brand of Levo is the 50mcg tablets

Ideally don’t change brand when increasing dose

Politely request/insist that GP test folate, B12, vitamin D and full iron panel including ferritin and thyroid antibodies for autoimmune thyroid disease if not been tested yet

Hi, I've been on 50mcg levo for 15 weeks now

Bloods could/should have been retested at 6-8 weeks after starting on 50mcg

Retest again in 2-3 months after being on 75mcg daily

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)