Dr declining Levo increase: I was diagnosed with... - Thyroid UK

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Dr declining Levo increase

RosieTheRoo2023 profile image
6 Replies

I was diagnosed with autoimmune hypothyroidism last August. Currently on 75mcg levothyroxine.

Symptoms are better but not gone as much as I’d hoped so requested an increase via letter as couldn’t get appt. They then phoned me for a telephone appt but said as numbers are in range they won’t agree to trial an increase.

Latest bloods:

FT3 4.0 (3.1-6.8) 24.3% through range

FT4 16.6 (12-22) 46% through range

TSH 0.99 (0.27-4.2)

What do you think? Should I push for an increase and if denied should I buy levo privately and increase regardless?

They’ve booked me into a rare face to face appointment next week to discuss further but I don’t think it’ll make any difference.

Opinions appreciated x

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RosieTheRoo2023
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SlowDragon profile image
SlowDragonAdministrator

Was test done as recommended……early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

Are all four vitamins at GOOD Levels

Approximately how much do you weigh in kilo

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine:

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

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).

beh1 profile image
beh1

I’d push for increase as that FT3 in particular is low, but you could suggest 75/100 alternate days (rather than 100 every day) as a compromise as you don’t want to overshoot sweet spot, and gp might be more inclined to agree? He/she is watching TSH and that’s why they’re reluctant.

tattybogle profile image
tattybogle

Use this to reassure GP that they can allow your TSH to be a little bit below range without increasing risks ~ it's complex but the jist of it is as long as TSH stays over 0.04 the risks are actually no greater than they are when it's 'in range' :

healthunlocked.com/thyroidu... useful-evidence-that-tsh-between-0.04-0.4-has-no-increased-risk-to-patients-on-levothyroxine-updated-new-study-does-show-small-risk

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

Use this one to explain/ back up the science of why TSH is relatively lower in patients on Levo than it is in people with functioning thyroid :

healthunlocked.com/thyroidu.... tsh-is-just-the-opinion-of-your-pituitary-about-your-dose-but-your-pituitarys-opinion-is-a-bit-warped-once-you-take-thyroid-hormone.

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

You can use this one to argue that TSH as low as 0.4/0.5 is perfectly acceptable and within guidelines .....since yours is 0.9 on 75mcg, a small dose increase may well keep your TSH in range anyway .. they won't know unless they try ... emphasise 'it's only a trial to see if it improves symptoms, and if symptoms of overmedication ensue you can simply reduce dose, no harm done' :

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

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

Use this shoe size analogy to argue for T4/T3 levels to be made optimal for YOU as an individual :

healthunlocked.com/thyroidu... explanation-of-what-*high-tsh-is-telling-us-when-our-ft4-level-is-normal-on-levothyroxine-the-shoe-size-analogy.-

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

Hope you can make some use of that lot.

RosieTheRoo2023 profile image
RosieTheRoo2023

Testing was done as per protocol recommended.

Vitamin ranges are all good and in general I’m much improved.

If they won’t prescribe an increase, maybe I should look at privately sourcing a low dose of T3 instead?

Sparklingsunshine profile image
Sparklingsunshine in reply toRosieTheRoo2023

Personally before adding T3 which is kinda the last chance saloon I would say you have plenty of room for an increase in Levo. If your FT4 was higher then by rights your FT3 should improve as well. You need an increase.

RosieTheRoo2023 profile image
RosieTheRoo2023

I’ll attend the appointment as planned but I’m going to see a private GP too.

Being proactive in looking after your health doesn’t seem to be encouraged in the NHS

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