Weight gain up and up! I’m hypothyroid on 100 levo - Thyroid UK

Thyroid UK

137,137 members160,815 posts

Weight gain up and up! I’m hypothyroid on 100 levo

Cazzalouise profile image
25 Replies

Hi everyone

I am having tests at Addenbrookes for Cushing.

When I first saw end he said I might have to take you off T4 I nearly passed out!

My weight is going up every single day whether I eat or not it’s devastating. I’m heavier now than when I was 9 months pregnant. Depression is worse I just want to hide in bed.

I’m on 100 Lego I would love to try T3 but my gp or endo are saying no

Completely fed up would love to hear opinions ladies.

I have learnt so much on here compared to doctors!

Written by
Cazzalouise profile image
Cazzalouise
To view profiles and participate in discussions please or .
Read more about...
25 Replies
SeasideSusie profile image
SeasideSusieRemembering

If you post your latest test results, with their reference ranges, members will be able to comment. Sounds like you might be undermedicated. If you've had FT3 tested at the same time as FT4 we can also see if you are converting T4 to T3 well enough or whether you need T3 added to your Levo.

Have you had thyroid antibodies and vitamins and minerals tested - Vit D, B12, Folate and Ferritin?

Cazzalouise profile image
Cazzalouise in reply to SeasideSusie

Waiting for test results from Addenbrookes will post then, thankyou so much

Cazzalouise profile image
Cazzalouise

Waiting on results from Addenbrookes will post A.S.A.P

Thankyou so much

Crystalbishop65 profile image
Crystalbishop65

I want T3 too so I could lose weight but my doctor won't give them to me. I find this insane they take at your side your weight goes up I give you T4 which makes you put on weight and it's only t3 that makes you lose weight but they won't give it to you bloody crazy and depressing I hate the doctors they lie

SeasideSusie profile image
SeasideSusieRemembering in reply to Crystalbishop65

T3 is not a weight loss medication. If you convert T4 to T3 well enough you don't need T3. What you do need is to know if you are optimally medicated so post your latest results in your own thread for members to help.

mistydog profile image
mistydog in reply to SeasideSusie

And if you say you want it for weight loss they DEFINITELY won't give it to you!

Rosierebel profile image
Rosierebel in reply to Crystalbishop65

This situation with thyroid medication is terrible, what do they expect us to do when they are removing medication that helps some of us at least, and leave us on medication that makes us Ill. Maybe we need to all get together and publicise this ludicrous situation we are in.

If you are being tested for Cushing's & it's confirmed that you do have Cushing's you won't be able to lose weight as high levels of cortisol interfere with metabolism. Cushing's also messes up your thyroid so that T3 & T4 needs to be tested rather than TSH. I'd hold of changing anything until you know whether you have Cushing's or not. You're under a good Endo department for being tested for Cushing's as a lot of Endo's don't see it enough to know how to diagnose it. What other symptoms do you have? I had Cushing's caused by a benign pituitary tumour which was removed over 2 yeas a go, I now need to take Levothyroxine & Hydrocortisone as I don't make enough of my own. If you re on Facebook there is a Cushing's UK group where you will get help & support.

Cazzalouise profile image
Cazzalouise in reply to

Thank you for replying Pauline.

When this all started I mean the hypo thyroidism, my blood test also showed an ecceptionally high level of prolactin in my blood. Dr at surgery knew nothing about it! I researched and it said if your not breastfeeding, it indicates a prolactenoma Which is a pituitary tumour.

When I went to see the endo that had no idea! They seemed to forget about it. I am severely overweight with weight mostly round the tummy back and boobs. I hate it so much. My weight is going up daily! Whether I eat or not I’m so tired and I’m depressed. They put me on 100 levo I have got worse not better! Virtually bedridden I’m also noticing I have psoriasis arthritis all auto immune diseases.

Also I found out by chance I have a low immune difficiency.

I’m fat tired and fed up. Going to Addenbrookes tomm for more tests.

My family are crazy with worry I just have no answers.

in reply to Cazzalouise

Hopefully your Endo will test you for a prolactenoma as well as for Cushing's. I've also got psoriatic arthritis although I don't think it was connected to the Cushing's as I'd been diagnosed with rheumatoid arthritis a few years back.

Hydrocortisone is only used following surgery for Cushing's but only at a replacement dose so you won't necessarily gain weight, also following surgery you should lose the excess weight. Hope it goes well today at Addenbrookes.

Cazzalouise profile image
Cazzalouise in reply to

Thank you so much

jgelliss profile image
jgelliss in reply to Cazzalouise

Cazzalouise

Strength and Sympathy for you and your loved ones . It's possible that your nutrients are not up to par . Read SeasideSusie's EXCELLENT valuable articles on nutrients that help our thyroids meds work efficiently for us . And SlowDragons GREAT advice and articles with gluten free benefits . EXCELLENT and VERY HELPFUL !

Cazzalouise profile image
Cazzalouise in reply to jgelliss

Thank you so much you lovely people are a tower of knowledge and strength

jgelliss profile image
jgelliss in reply to Cazzalouise

Cazzalouise

Your very welcome . We are all navigating our thyroid journeys together . Helping one another . Your not alone .

Best wishes for successful out come .

Cazzalouise profile image
Cazzalouise in reply to

Also Pauline will the hydrocortisone make me even fatter????

Cazzalouise profile image
Cazzalouise in reply to Cazzalouise

Forgot to say my eyes are black all round no amount of concealer works! I also have terrible constipation and can never go without laxatives. Also back ache and headaches. No joy in life I am on escitalopram but they are useless.

Thank you once more

elwins profile image
elwins

Always ask for a printout of your results, living in the Uk you are entitled to them. Some Doctors surgeries make a small charge for printing. It is easier keeping a eye on things yourself. Best of luck.

Cazzalouise profile image
Cazzalouise in reply to elwins

Thank you so much good sound advice

SlowDragon profile image
SlowDragonAdministrator

Essential to test your thyroid antibodies and also ideally a coeliac blood test too

Cazzalouise profile image
Cazzalouise in reply to SlowDragon

Is there a test I can buy and do myself???? I’m scared to ask for anything else if you can get an appt at our GP! He won’t do or give you anything. I call him Dr Crippen

Thank you for your advice slow Dragon

Rosierebel profile image
Rosierebel in reply to Cazzalouise

Is it possible to change you GP? Have you asked neighbours people in your vicinity about other doctors. We don't have to stay with one surgery

SlowDragon profile image
SlowDragonAdministrator

For full Thyroid evaluation TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.

Essential to test thyroid antibodies, FT3 plus all these vitamins

Private tests are available - loads of us forced to test privately

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's

Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges. Post results when you have them, members can advise

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first or can buy test

healthcheckshop.co.uk/store...

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

Cazzalouise profile image
Cazzalouise in reply to SlowDragon

Thank you so much for your advice x

Crystalbishop65 profile image
Crystalbishop65

You can buy T3 on <web site>

That's what I take now

helvella profile image
helvellaAdministratorThyroid UK in reply to Crystalbishop65

When you signed up to this forum, you were asked to agree to the guidelines. Your response here breaks guideline 25 so has been edited to make it compliant.

25. Do not post advertisements, links or information of any sort whatsoever, on where or how to obtain UK prescription only medications without prescription. This includes online pharmacies who issue 'prescriptions' on the basis of the completion of a simple health questionnaire.

healthunlocked.com/thyroidu...

You may also like...

Reasons for weight gain with Hypothyroidism?

Does levo cause weight gain?

Hypothyroid weight gain, tummy only

it almost impossible to lose weight. Any advice would be marvellous x

Why do people gain weight on levo?

Weight gain on Levo

weight which stayed the same even when increasing to 75mcg. My endo then added in 5mcg of T3 and...