weight gain: Morning everyone, I was told by a... - Thyroid UK

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weight gain

Jojozo profile image
25 Replies

Morning everyone, I was told by a nurse practitioner this week that the fact my T4 level is low since they changed my Thyroxine dose from 100mg to 75mg has nothing to do with my recent weight gain - her argument being that she doesn’t have a thyroid and she’s not overweight.

My diet hasn’t changed and I definitely don’t overeat, although it could be hormonal because I’m in surgical menopause as of two years ago. I thought weight gain was a well-known side effect of an underactive thyroid?

She said my T4 was still in range and the reason for trying to get my TSH up was bone health and potential heart issues.

Thank you in advance for any advice 🩷

My latest results:

T4 - 13.3 pmol/L - Range: 11.1 - 22 pmol/L

TSH - 0.68 mu/L - Range: 0.27 - 4.2 mu/L

These ones are from September:

T4 - 17.5 pmol/L - Range: 11.1 - 22 pmol/L

T3 - 5 pmol/L - Range: 3.1 - 6.8 pmol/L

TSH - 0.08 mu/L - Range: 0.27 - 4.2 mu/L

Ferritin - 96 ug/L - Range: 30 - 150 ug/L

Folate - >20.0 ug/L - Range: 1.9 - 25 ug/L

B12 - 823 ng/L - Range: 197 - 771 ng/

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Jojozo profile image
Jojozo
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25 Replies

Well bully for her that she has no thyroid and isnt overweight, maybe she takes enough thyroid replacement hormone for her not to suffer these things. Funnily enough human beings come up in shapes, sizes and colours.

We dont all fit into one mould. We all have our own unique genetic makeup. One of the many failings of thyroid treatment is trying to cram us all in a box, to treat us all exactly the same.

Sparklingsunshine profile image
Sparklingsunshine in reply toSparklingsunshine

And also once again no FT3 result as the NHS rarely tests it, so you have no idea what your active thyroid hormone level is. However its likely to be low with your low in range FT4 result.

Jojozo profile image
Jojozo in reply toSparklingsunshine

Thanks for your reply. I agree - we are all different and she said an underactive thyroid only makes a tiny bit of difference. She also suggested fasting, which I thought was bad for thyroid problems/metabolism?!

Sparklingsunshine profile image
Sparklingsunshine in reply toJojozo

Its the old blame the patient mantra again. If hypothyroid only makes a tiny difference why is it always listed as a primary symptom? Weight is complex, its dictated by genes, environment, lifestyle and psychological factors. However having a faulty thermostat as a gland certainly is a big disadvantage.

Jojozo profile image
Jojozo in reply toSparklingsunshine

Agreed! My thyroid has been scanned and it’s very small so it’s struggling as it is, let alone with less Thyroxine!

Lottyplum profile image
Lottyplum in reply toJojozo

These so called medically trained arrogants make me want to spit! Or scream! After reducing my Levo I ended up in severe abdominal pain, attending the Surgical Assessment Unit, followed by colonoscopy+CT scan. All negative. It was Def due to being under medicated, nothing more, nothing less! Compounded by not listening to me! 🙊🙉🙈

Jojozo profile image
Jojozo in reply toLottyplum

That’s terrible! I’m glad you’re okay but that should not have happened in the first place. Absolutely shocking.

Forestgarden profile image
Forestgarden

Your Sept results looked fine! Did you feel ok on the 100mcg? A drop from 100 to 75 seems like a lot when you were only a bit below tsh range. Your tsh wasn't completely suppressed. If you were feeling slightly hyper, may be a slight reduction would have been enough, say 100mcg on days 1 and 2, then 75mcg on day 3.... or similar.

Jojozo profile image
Jojozo in reply toForestgarden

Thanks for your reply. I felt fine on 100mg but my GPs are obsessed with my TSH level, which has barely moved in ten years, despite my Thyoxine being lowered before. I definitely wasn’t feeling hyper. Funnily enough, the NP has suggested cycling my dose so I’ll give it a go.

Lottyplum profile image
Lottyplum in reply toJojozo

They all seemed to be obsessed with TSH! If only they would investigate further than the end of their noses!🙊

1tuppence profile image
1tuppence

Are you listening to a nurse practitioner who doesn't appear to have much thyroid knowledge? Who suggested you lower your dose? GP or NP? Weight gain is a symptom of hypothyroidism, which NP should know. Apart from weight gain, how do you feel in yourself with a lower dose?

Jojozo profile image
Jojozo

Bloody awful 😅 My GP lowered my dose originally but I had to fight to get the NP to up it again. I’m seeing my GP next week to discuss it and thankfully I’m booked in with a private endo in January.

1tuppence profile image
1tuppence in reply toJojozo

Am guessing this was in reply to me? if not, apologies.

This obsession with TSH is disheartening, and in many cases seems to be counter-productive to well-being. Somewhere on the forum there are links that may prove helpful to you with regards to TSH and medics. I'll see if I can find help, and come back.

 Charlie-Farley

Please also check that the endo you are seeing is a thyroid specialist, and not a diabetes specialist. You can Google their name...or do a Post on here asking for anyone who has seen that particular endo to PM you.

Jojozo profile image
Jojozo in reply to1tuppence

Sorry, yes! The reply was for you. The endo is definitely a thyroid specialist, thankfully. I got her details from the list sent over, and I also asked another member who had seen her and got a bit thumbs up. The TSH thing is so weird. Mine is stuck where it is and that’s that!

1tuppence profile image
1tuppence in reply toJojozo

healthunlocked.com/thyroidu...

This was a Post by  Charlie-Farley that you might find interesting/helpful for when you see your GP?

Plsd you've been given the thumbs up for your endo.

My TSH is similar, but in fact lower than yours.....and as you say, that's that...at least in my mind, and my private endo seems to accept it's where it is and has prescribed NDT as poor conversion is an issue for me. Wishing you well xx

Jojozo profile image
Jojozo in reply to1tuppence

Thank you so much. I am also a poor converter so I'm really hoping the endo can help. There's no point in going to see an HNS endo - I know they'll just say the same as the NP! xx

Forestgarden profile image
Forestgarden

This tsh obsession is the bane of all our lives! Stick to your guns x

Jojozo profile image
Jojozo in reply toForestgarden

Thank you! x

SlowDragon profile image
SlowDragonAdministrator

You are in need of dose increase in levothyroxine

Jojozo profile image
Jojozo in reply toSlowDragon

Thank you. I have gone back up to 100 but the NP wants me to cycle 75mg and 100mg.

Charlie-Farley profile image
Charlie-Farley

oh heck! Dosing by TSH again.

I have a suppressed TSH (under range but still measurable) but both my FT3 and FT4 are comfortably within range.

I feel great and will never be managed by a nurse practitioner or a GP for that matter. They simply don’t have the time to learn as much as I can glean from the more experienced members of the forum. I would trust  SlowDragon  DippyDame or  greygoose and others too numerous to mention over any endo after all the lived experience on here. 😱

There are two pinned posts that may help if they have not already been suggested  tattybogle ’s TSH post and my post on NHS and NICE guidelines the useful bits.

Not sure if anyone could suggest any other papers.

I used the dosing by weight to argue for a therapeutic dose and counter their assertion that I needed to keep my TSH in range. They always want to make the numbers look good - I do wish they would focus more on us looking good. 😱

Tell them to stop treating the lab work- good grief.

If I find anything else I will pin below. 😘👍

Jojozo profile image
Jojozo in reply toCharlie-Farley

Thank you so much. I don't know what I'd do if it wasn't for this forum and all the kind people that offer help and advice. There would be a lot more unwell people in the world if we just listened to what doctors told us. The irony! 🤷🏼‍♀️😊

Charlie-Farley profile image
Charlie-Farley

Courtesy of   humanbean links they provided in another post. (Thank you HB)

These are from thyroid Canada -

Still no proof that low TSH causes harm to bones.

thyroidpatients.ca/2019/07/...

The LOW T3 effect on the cardiovascular system

thyroidpatients.ca/2018/07/...

SlowDragon profile image
SlowDragonAdministrator

The most important results are ALWAYS Ft3 followed by Ft4

Most people when adequately treated will need Ft4 (levothyroxine) at least 70% through range

And Ft3 ideally similar

Currently

FT4: 13.3 pmol/l (Range 11.1 - 22)

Ft4 only 20.18% through range

Clearly on inadequate dose levothyroxine

Even in September

FT4: 17.5 pmol/l (Range 11.1 - 22)

Ft4 barely adequate at 58.72% through range

And obviously no Ft3 results

Or vitamin D

As you are currently on inadequate dose levothyroxine highly likely vitamin levels are dropping

What vitamin supplements are you taking

BEFORE Endo consultation get FULL thyroid and vitamin testing

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)

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

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

See detailed reply by SeasideSusie

healthunlocked.com/thyroidu...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

There’s nothing on your profile

As you have Hashimoto’s are you on strictly gluten free and/or dairy free diet

If not get coeliac blood test BEFORE trialing strictly gluten free diet

Jojozo profile image
Jojozo

Thank you. I am a bit supplement crazy and I'm taking loads at the moment, because I'm in that desperate situation where I think I'll magically find one that will 'cure' me! I am really careful with my diet.

The endo has just sent me a kit to get everything tested so the finger prick test information will be really helpful. I've just been changed onto a new type of HRT because I have high histamine and react badly to oestrogen, but once that's had a chance to kick in I'm going to get the bloods done and sent off. I'm on the waiting list so I may even get to see the endo earlier than January 🤞🏼

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