Hello.

[2dayisthe1stday]

I am new to this community and the fibromyalgia community and a couple of others.

My question. Do others lose weight with hypothyroidism? I also have fibromyalgia and take pregablin for nerve pain/levothyroxine for hypothyroidism..

Thank you 💜

[helvella Administrator Thyroid UK]

It is not possible to say that people who are hypothyroid gain or lose weight - either before treatment, or when on treatment.

One of the problems is that some people lose weight before treatment. And at least some of that weight loss might be muscle wasting - which can be serious. Whereas others put on weight - even if mostly due to mucin rather than fat.

Some gain weight when treated - e.g. on an apparently adequate dose of levothyroxine. Whereas others lose weight.

In other words, as so often, we are all different and can have our own individual reactions/changes.

[2dayisthe1stday in reply to helvella]

Thank you Helvella.

I lost a lot of weight in a short time before I started levothyroxine. I have continued to lose weight since and have pointed this out to my doctor who simply weighs me, makes a note, looks at me and says no more than we'll have to keep an eye on that..

Anyway. Any suggestions? 😊

[2dayisthe1stday in reply to 2dayisthe1stday]

Plus I appear to be shrinking height wise! And muscle mass too. Bingo wingd are virtually gone though!?

[SlowDragon Administrator]

Welcome to the forum

How much levothyroxine are you currently taking?

How long have you been on this dose?

Do you always get same brand of levothyroxine?

Probably the majority of hypothyroid patients gain weigh5, but a significant minority either struggle to maintain weight, or loose weight

Do you have test results to add

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

Far too often only TSH is tested

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

Ask GP to test vitamin levels

Low vitamins lead to low Ft3

Low Ft3 common with fibromyalgia

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, best not mentioned to GP or phlebotomist)

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 ultra vitamin (doesn’t include folate)

medichecks.com/products/thy...

Thyroid plus vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Medichecks often have special offers, if order on Thursdays

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

If you have Hashimoto’s (autoimmune thyroid disease) then coeliac or gluten intolerance is very common. Both coeliac and gluten intolerance can be cause of Weight loss

Important to get coeliac blood test done

[2dayisthe1stday in reply to SlowDragon]

Goodness you type quickly!

I take 50mcg levothyroxine and 75mg pregablin.

I started taking levothyroxine (actavis) late August last year. By Christmas I was flagging again and joint/muscular pain daily.. My rheumatology referral cancelled due to covid-19.

I am due bloods to be taken.

I have requested access to test results via the online app for my healthcare group very recently!

I shall chsse that up tomorrow.

Perhaps I worry too much 🤔

Thank you for caring and please look in when i get my results through 😊

[Marz in reply to 2dayisthe1stday]

When you have your results with ranges it would be better to start a new post so it is not lost here !

Do you have Hashimotos ?

Does your GP test T3 ? - if low in range can be linked to Fibro.

[SlowDragon Administrator in reply to 2dayisthe1stday]

50mcg levothyroxine is only a starter dose. Bloods should be retested 6-8 weeks after each dose increase

All thyroid blood tests should be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Essential to test Ft4 and Ft3, thyroid antibodies and all four vitamins

Many people forced to test privately to get full results

Even if we don’t start on full replacement dose, most people need to increase 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.

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...