Does my dosage need changing: I have been having... - Thyroid UK

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Does my dosage need changing

Sandrafrance profile image
17 Replies

I have been having problems for two years now. Terrible fatigue, insomnia. Night sweats

I have severe diverticulitis, hiatus hernia and IBS. also osteoarthritis in my knees, lumbar spine and hands.

I have just had another thyroid check as on 25 mcg of thyroxine and I thought maybe I needed a change in dosage. My previous tsh was 1.89 now it’s 3.05 in 6 months

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Sandrafrance profile image
Sandrafrance
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17 Replies
SlowDragon profile image
SlowDragonAdministrator

Yes definitely.

Contact GP for 25mcg dose increase in levothyroxine up to 50mcg

Bloods should be retested 6-8 weeks after each dose increase

Standard starter dose of levothyroxine is 50mcg

You have been left extremely under medicated

Likely extremely low vitamin D, folate, ferritin and B12

Request these vitamins are tested now, or test privately

Night sweats are linked to B12 deficiency

Which brand of levothyroxine are you currently taking

Many people find different brands are not interchangeable

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

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

Is this how you do your tests?

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

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/thyr...

Sandrafrance profile image
Sandrafrance in reply to SlowDragon

I am taking Merck and have done for last three years I take vitamin D every 3 months but haven’t been tested for B12. I’m banging my head against a brick wall. I only managed to get retested as used an I terne when my doc not there.

I’m so frustrated. Maybe I need to do it privately

Sandrafrance profile image
Sandrafrance in reply to SlowDragon

My ferritin 69.8

SlowDragon profile image
SlowDragonAdministrator in reply to Sandrafrance

Ferritin looks ok

Presumably you are in France

Levothyroxine doesn’t top up failing thyroid, it replaces it, so it’s important to take high enough dose

Sandrafrance profile image
Sandrafrance in reply to SlowDragon

I feel like just using the dose myself.

SlowDragon profile image
SlowDragonAdministrator

Likely to need further increase in levothyroxine after next blood test

guidelines on dose levothyroxine by weight

Even if we don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

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

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.

RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

SlowDragon profile image
SlowDragonAdministrator

Just testing TSH is completely inadequate

Absolutely essential to ALWAYS test Ft4 and Ft3 as well

Always test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

(That’s Ft3 at 58% minimum through range)

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

tukadmin@thyroiduk.org

gponline.com/endocrinology-...

Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.

shaws profile image
shawsAdministrator

25mcg of levothyroxine is an incremental dose (unless you are very frail with a heart condition). Unfortunately GPs seem to have very little knowledge of what to do for patients who have hypothyroidism but you can rest assured that members will help/advise so that you can feel much better.

doris59 profile image
doris59

Hi there, you are taking a very low dose, so you will be feeling pretty awful. I only feel good when my tsh is around 1. When mine starts to creep up I get terrible muscle and joint pain and swelling. My hair becomes thinner and my nails get very flaky and I feel exhausted. I need a dose of 100mcg to feel relatively normal. Go back to your Doctor and get an increase and see if that helps, if after 2 moths there is no improvement go back again for another increase until you begin to feel better. Some bloody Doctors just don’t seem to understand the thyroid and so we have to suffer for their incompetence. Good luck Doris

Sandrafrance profile image
Sandrafrance in reply to doris59

Thankyou, I have tried explaining but they just look at my results and say fine. My tsh has jumped from 1.89:to over 3 now

doris59 profile image
doris59 in reply to Sandrafrance

I would advise getting another Doctor

Sandrafrance profile image
Sandrafrance

I agree but where we live their aren’t any lol

Sandrafrance profile image
Sandrafrance

I’m wondering whether to ween myself off and see if that’s the problem as a nurse says I do t n Ed it

whispers profile image
whispers in reply to Sandrafrance

No ! don't stop taking it, it is obvious that you need it with a tsh over 3. If mine gets to that level I feel pretty poorly. What you do need, as has been explained, is all three, tsh, ft4, ft3 testing, you can get this done privately if your gp won't do it, you also need to increase your dose to get that 3 back down to 1 or slightly under.

Sandrafrance profile image
Sandrafrance in reply to whispers

I do feel poorly but getting my doc to understand is hard. I am so tired, achy. Palpitations when I get up. She will say it’s in range. I’m in France and in the countryside and no choice of another doctor

Sandrafrance profile image
Sandrafrance in reply to Sandrafrance

My throat 8s very dry at night I feel sick too but have severe diverticulitis so that could be the sick feeling.

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