NDT: Hello - I’m currently on 100mmg Thyroxine... - Thyroid UK

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Headandneck72 profile image
27 Replies

Hello - I’m currently on 100mmg Thyroxine however I don’t feel great and I’ve now put on nearly 3 stone in two years since my thyroid has shown under activity. I’ve only been taking thyroxine for five months approx - I’d like to try the natural desiccated thyroid to see if that’s better for me? Has anyone any thoughts as to why I’m gaining sooooo much weight?!

I’m having Hemi surgery this Friday so want to sort my weight issue out immediately after if possible

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Headandneck72
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27 Replies
SeasideSusie profile image
SeasideSusieRemembering

Headandneck72

Weight gain can be due to undermedication. What are your latest test results? If you can post them, along with their reference ranges (these vary from lab to lab) we can see if you are prescribed enough. Ideally we need to see the following:

TSH

FT4

FT3

FT3 is essential because T3 is the active hormone which every cell in our bodies need, and low T3 makes weight loss difficult, so we need to see FT4 and FT3 from the same blood draw to know whether or not you convert T4 into T3 well enough.

Also important for thyroid hormone to work properly are optimal nutrient levels, so it's important to test:

Vit D

B12

Folate

Ferritin

Headandneck72 profile image
Headandneck72 in reply toSeasideSusie

Hmmm they refuse to test all of that at doctors surgery I have asked.

Bloods
Headandneck72 profile image
Headandneck72 in reply toHeadandneck72

Hoping the hospital will give me a thorough blood test

SlowDragon profile image
SlowDragonAdministrator in reply toHeadandneck72

Unlikely....majority U.K. patients have to test privately

Headandneck72 profile image
Headandneck72 in reply toSlowDragon

Ok I’ll do that straight after - so would I keep taking the thyroxine before test or stop to see what my thyroid is doing naturally

SeasideSusie profile image
SeasideSusieRemembering in reply toHeadandneck72

Well, your TSH is far too high for a treated Hypo patient and has been for some time. Most of us feel best when TSH is 1 or below with FT4 and FT3 in the upper part of their ranges. So your current level of just over 3 shows you need an increase in your dose of Levo.

Exactly what is the hemi surgery you are having?

Headandneck72 profile image
Headandneck72 in reply toSeasideSusie

I have a nodule on the right lobe, I also have had radiotherapy to neck for a different cancer on tonsil (squamous cell carcinoma HPV+) I’m hoping that’s not got anything to do with this - my FNA were all inconclusive so they are taking it out to test as I scored a 4 on the ultrasound

SlowDragon profile image
SlowDragonAdministrator

100mcg is not necessarily high enough dose

What are your most recent thyroid results

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies or if been left under medicated

Do you always get same brand of levothyroxine

Which brand

Ask GP to test vitamin levels

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 down to £26.10 if go on thyroid uk for code

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

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

guidelines on dose levothyroxine by weight

Even if we frequently 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 eventually on, or near 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.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

Headandneck72 profile image
Headandneck72 in reply toSlowDragon

Hi all - I am due to have Hemi removal Friday so will ask for full bloods after that I weigh 75kg now

SlowDragon profile image
SlowDragonAdministrator in reply toHeadandneck72

75 x 1.6 = 120mcg as the likely daily dose levothyroxine required

120 x 7 days = 840mcg in total per week

So you are likely under medicated and in need of dose increase

125mcg 5 days week and 100mcg 2 days week = 825mcg in total

Or 125mcg 6 days week and 100mcg one day a week = 850mcg in total

All four vitamins need to be optimal

Always worth trying strictly gluten free diet, but get coeliac blood test done BEFORE cutting gluten out

Headandneck72 profile image
Headandneck72 in reply toSlowDragon

Wow you guys really know your stuff - this thyroid lark is so very complicated 🤯

Another thing...if I’m already on thyroxine what will happen once I’ve had half the thyroid with the nodule removed? Will it start to work or will I need more thyroxine?

SlowDragon profile image
SlowDragonAdministrator in reply toHeadandneck72

Shouldn’t make much difference

As soon as we are on levothyroxine the feedback mechanism is broken. Hence why most people need for full replacement dose

It’s essential to maintain optimal vitamin levels, testing as minimum annually

Headandneck72 profile image
Headandneck72 in reply toSlowDragon

Do you think I’ve always been low on TSH as the bloods chart above shows stable from 2014 to 2017 then it goes really high..what does this mean

SlowDragon profile image
SlowDragonAdministrator in reply toHeadandneck72

When did you start on levothyroxine?

Most people on levothyroxine will have TSH under one when adequately treated

Obviously last 2 TSH tests far too high

Headandneck72 profile image
Headandneck72 in reply toSlowDragon

About five months ago started on 25 they increased to 50 but I struggled to get an app for bloods so I increased to 100 myself after joining here

SlowDragon profile image
SlowDragonAdministrator in reply toHeadandneck72

What vitamin supplements are you currently taking?

Anesthetic can lower B12

Headandneck72 profile image
Headandneck72 in reply toSlowDragon

I’m not allowed to take supplements two weeks before surgery but after reading one of your posts to someone else I brought these to take after

Vits
SlowDragon profile image
SlowDragonAdministrator in reply toHeadandneck72

Get vitamins tested first

Headandneck72 profile image
Headandneck72 in reply toSlowDragon

Ok will do straight after op - where can I get everything tested in one go instead of separate?

SlowDragon profile image
SlowDragonAdministrator in reply toHeadandneck72

Medichecks or Blue horizon

Headandneck72 profile image
Headandneck72 in reply toSlowDragon

Ok I’ll order those now then

SlowDragon profile image
SlowDragonAdministrator in reply toHeadandneck72

Perhaps Wait see if Medichecks has offer on Thursday ?

Headandneck72 profile image
Headandneck72 in reply toSlowDragon

Oh ok just looked it’s £139 for the thyroid premium gold is that the one I need do you think

SlowDragon profile image
SlowDragonAdministrator in reply toHeadandneck72

Medichecks is £79.....often on offer at £59

Or start with just

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Then do Medichecks thyroid and vitamin testing 6-8 weeks after operation

Headandneck72 profile image
Headandneck72 in reply toSlowDragon

Ok good idea

Headandneck72 profile image
Headandneck72 in reply toSlowDragon

Mercury mostly

SlowDragon profile image
SlowDragonAdministrator in reply toHeadandneck72

Always insist on same brand at each prescription

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