Vegovy : Hi guys, l used to have graves basedow... - Thyroid UK

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Vegovy

Faith442024 profile image
41 Replies

Hi guys, l used to have graves basedow disease and l was waying 56kg which l felt good. Now lve got hashimoto and waking 80kg. My THS is 4.7 still to high but hopefully it will go down as lve started alternative days 100mg and 125mg. My question is does anyone tried Vegovy injections please? I'm not diabetic but l'm so unhappy with my sudden weight gain that's killing me now mentally. I'm a fitness instructor so l do know what l should be eating despite all my efforts nothing is shifting.Thanks a million Anna

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Faith442024 profile image
Faith442024
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41 Replies
Buddy195 profile image
Buddy195Administrator

Before considering anything so drastic as weight loss injections, do share your most recent thyroid blood tests and key vitamins (folate, ferritin, B12 and vit D). It could well be that your thyroid medication or key vitamins are not optimal. Remember ‘optimal’ will likely differ from what your GP/ Endo says is ‘normal’ or ‘within range’

Faith442024 profile image
Faith442024 in reply to Buddy195

Thank you Buddy195 lll soon share my results xxx

RedApple profile image
RedAppleAdministrator

You are not the first, and probably won't be the last in this forum to ask about Wegovy.

Click this link and have a look at previous discussions around this subject healthunlocked.com/search/p...

helvella profile image
helvellaAdministratorThyroid UK in reply to RedApple

Might find some other posts by trying a search for GLP-1 as well. (There are bound to be several that appear in both sets of search results.)

healthunlocked.com/thyroidu...

Faith442024 profile image
Faith442024 in reply to RedApple

Thank you RedApple fir you reply greatly appreciated xx

SlowDragon profile image
SlowDragonAdministrator

Far more likely to have success getting thyroid and vitamin levels optimal

Most people on Levo when adequately treated will have TSH around or below 1……and always below 2

Most important results are always Ft3 followed by Ft4 (levothyroxine)

Looking for Ft3 at least 60-70% through range and ideally not far below Ft4

Recommended that 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)

Absolutely ESSENTIAL to maintain GOOD vitamin D, folate, ferritin and B12

Always test at least annually

Many, many Hashimoto’s patients need to supplement vitamin D, vitamin B complex and separate magnesium supplements daily

please add results and ranges if you have them

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

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG 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

support.medichecks.com/hc/e...

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

Faith442024 profile image
Faith442024 in reply to SlowDragon

Thank you SlowDragon! l have send my thyroid sample this morning so soon will update you with the results xx

greygoose profile image
greygoose

Hypo weight-gain has little to do with what you eat. And it's more likely to be water-retention than fat. So, it's difficult to see what Wegovy could do for you. What you need are optimal thyroid hormone levels. And if your TSH is over 4 then you're quite a long way from that. x

Faith442024 profile image
Faith442024 in reply to greygoose

Hi Greygoose, I went from 22% of fat to 30 so unfortunately there's a lot of fat gained too.

I'm planning to start treating myself privately like most of you here so l hope lll get from 4 to around 1 🙌

However when l was taking more levothyroxine l went down to 0.06 at some point but l felt shaky and anxious so let's see how it goes.

Thank you xx

greygoose profile image
greygoose in reply to Faith442024

Well, I don't call that a lot of fat! But, even so, it still has little to do with what you eat.

Is that your TSH that is at 4? If so, you are very under-medicated. But, it's not about the TSH, that doesn't cause symptoms, it's about your FT3, and just testing TSH will not tell you if you have low FT3. You need full thyroid testing.

Faith442024 profile image
Faith442024 in reply to greygoose

Hi Greygoose

I was only pointing out someone who was a regular gym-goer and who gained 3 stone within 4 months without knowing why at the time, and still can't believe what she sees in the mirror.

It's been overwhelming for me, but I'm over the shock and ready to start my healing journey to feel better.

I've sent a private blood sample this morning which includes T3, T4, and TSH, so I will keep you posted if you would like.

Thank you for your reply xx

JenniferW profile image
JenniferW

Once you've got your thyroid levels under control you should lose the weight naturally, why not wait until it's under control and see where you end up. Your body is already trying cope with the changes in thyroid levels without adding something else into the mix.

Also as Buddy says your vitamin levels will affect how well your thyroid works and an underactive thyroid results in poor stomach function, so it's all a vicious circle. Did they test your vitamin levels? If not ask them to. I take iron (on the advice of a doctor), vitamin D and magnesium glycinate, it all helps on top of the levothyroxine.

You say your diet is good, but one impact of an underactive thyroid is to reduce the number of calories you need. I hadn't put on weight when I was diagnosed because I had had stomach problems and indigestion that left me unable to eat very much of anything and only very plain foods (mashed potato, stewed apple and milk mainly), so my calorie intake had been reduced drastically and unintentionally. I am not suggesting you go on a crash diet, but perhaps smaller portions temporarily (of a still balanced diet) might be helpful until your thyroid level is corrected. If you look at how much old ladies eat, that's the kind of portion size I mean. Just for a few weeks though whilst the pills kick in, as a fitness instructor I am sure you need lots of nutrients long term.

Faith442024 profile image
Faith442024 in reply to JenniferW

My dear, l had graves disease plus have pituitary adenoma which possibly was secreeting some hormones whereas maybe now not anymore as it has shrank in size. I don't know, all l know l eat 3 small meals a day and still can't shift anything of.I gained almost 3 stones in 4 months going from 22% of fat to 30%.

I did 6 Week gym training and managed to loose less then 1 kg which shocked me. Majority of ladies here recommend to check vitamin levels which that's what lm planning to do next.

I will keep you posted if you would like xxx

JenniferW profile image
JenniferW in reply to Faith442024

You poor thing, what a lot to cope with. I will keep my fingers crossed for you that the levo kicks in soon.

pennyannie profile image
pennyannie

Hello Anna :

Graves is an auto immune disease for which there is no cure :

All things Graves - books and websites Elaine Moore - elaine-moore.com

Were you on Anti Thyroid drugs Carbimazole or Propylthiouracil - PTU - and found remission or did you have definitive treatment - either RAI thyroid ablation or a thyroidectomy and then became primary hypothyroid and put on T4 - Levothyroxine ?

With some people Graves burns itself out leaving the person hypothyroid - did this happen to you and why you then were hypothyroid.

Your TSH is much to high and you likely need both T3 and T4 thyroid hormone replacements prescribed -

Do you have any thyroid blood test results /ranges for a Free T3 and Free T4 or have you just been medicated on TSH readings which seems the ' norm ' in primary care but not very helpful for patients struggling with symptoms on T4 monotherapy.

We do need more information to help you better understand where you are in this and support you through to being optimally medicated which then will see your body replenished and restored with your weight and metabolism restored back to where they naturally sat before you became ill with thyroid health issues.

Faith442024 profile image
Faith442024 in reply to pennyannie

Dear Pennyannie

Thank you so much for your reply

I've sent my private thyroid sample this morning so soon l shall have the results of T3, T4 and THS.

You mentioned to replenish my thyroid and metabolism,how? By adding T3? Because when lm on higher does of levo l start to have anxiety just like lve had with graves.

I'm planning to start private route like most of you but just checked that only consultation cost £450! Then if lll need T3, which is not on NHS it will break my bank!

Is that norlmal prices for private endo?

Xxx

pennyannie profile image
pennyannie in reply to Faith442024

Your body needs replenishing of core strength vitamins and minerals in order to be able to utilise and convert the thyroid hormone replacement which in turn will lead to an improved metabolism.

I know now that I need to aim to maintain my ferritin at around 100 - folate 20 - active B12 125 ( serum B12 500++ ) and vitamin D at around 125.

So, first off we need these core strength building blocks strong and solid as no thyroid hormone replacement works well until our body is with optimal levels as detailed above.

As for an iron supplement - any iron bisglycinate will be less harsh and kinder on your stomach and bowel but first we need to know if there is any other reason for your low ferritin and you'll likely need an iron panel run - before you start supplementing.

You may well need a small dose of T3 alongside your T4 - but not yet -

we need to see your blood test results and ranges first and maximise treatment with T4 first as it's the cheapest and easiest treatment option to manage and works very well for around 80% of those who take it.

I have no idea how much it costs to see an endo - and from what I read on here - you need to know who to go to - Thyroid UK - the charity who supports this patient to patient forum hold a list of recommended endo and thyroid specialists - so maybe email admin @ thyroiduk.org - and ask for that to be emailed to you.

I think many still do video appointments so distance need not be an issue -

and you can always ask for recommendations to who ever you think you my like to see - but we are not allowed to talk openly about any medical professional so your replies will be by Private Message - PM's - which means - your Chat button - alongside the Alert button lights up and you go to a private one to one screen.

Many of us self medicate as we can't afford to go privately :

T3 is available on the NHS - it has become something of a post code lottery which we can advise on once we know better where you are in your thyroid journey.

First step is to arrange a full thyroid blood panel to include your TSH + T3 + T4 + inflammation, antibodies, and ferritin, folate, B12 and vitamin D -

Within thyroiduk.org - there is whole page detailing private blood companies who can run the blood tests for you - it's around 10/11 different analysis and referred to by some as a Thyroid Ultra/Extra-

Stop any supplements around a week before the blood draw so we measure what your body is holding and not that recently ingested.

Stop anything containing biotin as that can interfere with the measuring assays used in laboratories.

You need a by 9.00 am blood test appointment and you fast over night just taking in water and you take your T4 for that day after the blood draw so having left around a 24 hour window from your last T4 dose.

When you have the results and ranges just start a new post with all the information and you will be talked through your next best steps back to better thyroid health.

Faith442024 profile image
Faith442024 in reply to pennyannie

Thank you so much you're an angel ❤️

I found this test from MMH

Haemoglobin

Ferritin

Transferrin saturation

Active B12

Folate

Where can l test serum B12 and inflammation please??

Anna xxxxx

pennyannie profile image
pennyannie in reply to Faith442024

I don't know - the easiest option is to get all 10/11 blood tests done at the same time and suggest either Medichecks or Blue Horizon -

SlowDragon already gave you all the links in her first reply to you - and please follow all the instructions as to how to arrange and undertake a venous blood draw -

I know and I'm sorry t's more money but its a complete thyroid blood profile and where we all start off -

and we will work with you to improve your health and well being - and when the time is right - suggest you then need to see and likely suggest ' an endo ' as by then you'll be properly briefed and better able to advocate for yourself to get the right treatment through the right medical channels -

There is no quick fix - your body needs time - the core strength building blocks likely need supporting - and once with a stronger foundation your health and well being will improve and you will be better placed to turn this around and get your life back.

You 're likely in information overload - take time to reread all that's been written -

it may seem daunting - but just go 1 step at a time - keep reading this forum - stuff sinks in and starts to make sense - and this forum has saved many people's lives - mine included - and why I'm here giving back as a way of saying ' thank you ' and to help others who find themselves caught up in the confusion of their own thyroid health care issues.

P.S. I'm no angel just anther person dealing with hypothyroidism and forced into self medicating as I received no help nor advice from mainstream medical - I am with Graves Disease but post RAI thyroid ablation 2005 and became more unwell some years later and seen as a conundrum by the NHS - details on my profile page -

You can read any forum members ' thyroid journey ' if interested - by just pressing on the icon alongside their name in any reply - and there you'll find all they have ever written and replied to on this open forum -

If you get ' lost ' reading around - do not worry - just press the Profile icon alongside the Chat and Alert icons and that takes you back to your profile page and all you have ever written and replied to on this forum.

SlowDragon profile image
SlowDragonAdministrator

I'm a fitness instructor

This stood out

If you are very active then this will diminish your Ft3 levels

Retest thyroid and vitamin levels 8 weeks after latest increase in dose Levo

You may need further increase or may need to look at getting T3 prescribed alongside levothyroxine

But FIRST essential all vitamins OPTIMAL and trialing gluten free/dairy free

Faith442024 profile image
Faith442024 in reply to SlowDragon

Dear SlowDragonI made a mistake writing my response to all participants so now lve decided to write individually in hope lll gather as much help as l possibly can 🙌

If of course people are willing to spare time on me 🙌

I have to say l was hoping in my heart that my thyroid will rebalance it itself by healthy eating, stressing less, etc etc.

Let's be honest till 3 years ago l never had to worry what l ate as my metabolism was burning everything with almost zero effort.

Having said that l would say in the last 3 years prior hadhomo diagnosis l was slowly gaining weight but about that l will mention later.

As you might guess lm just beginning to understand what exactly happened to me and l still don't fully understand but l have my thoughts to what could have happened.

For many many years l suffered from anxiety etc then they diagnosed me with cptsd put me on medications gave me psychiatric care signed me off and l thought that was me done in life.

Then they discovered graves disease and put me on Carbimazole. The story unfortunately doesn't end well for me, because of me!

Despite being slim l never liked my chubby legs and fat knees where my body stores fat around it, apparently there's a name for this condition,l don't know.

Anyway, at some point lve stopped taking carbimazole without telling doctors as l was noticing weight gain.

They kept checking my bloods very sporadicly l must say and myself l didn't think anything of it. Little did l know that myself l will cause graves to burnout itself and cause another outoimuninity = hashimoto.

Please bare in mind before l got hashi they diagnosed me with bulky (inflamed) adrenal glands, Helicobacter pilory then acute pancreatitis, most likely caused by H pylori and 4mm pitutiary adenoma, which apparently is not secreting any hormones and has shrank to 3mm.

Prior to getting hasi I was very heavy vapourer, l mean very heavy and lve chronic stress from my past childhood so what l'm thinking happened was that my adrenal glands basically had enough of stress!

Stress was coming Graves disease, Cptsd stress, helicobacter pylori, pancreatitis, heavy vaping and that's where on 24 January 2024 l collapsed and l couldnt recognise myself ever since.

l gained almost 3 stone and most of the weight went into the abdomen area, which is worrying me a lot.

I went from 22% body fat to 30% so no it's not all water retention.

Anyway, lm taking my health very seriously now and no longer care about looking fit but feeling healthy!!!

You'll definitely see me here more often.

I have sent my private sample today so will be coming back with my results soon xxx

FancyPants54 profile image
FancyPants54

I have used Victoza, which is very similar to Wegovy but a daily injection. I used it to stop myself tipping over into pre-diabetes. My endo recommended it. I have strong views about using it only for weight loss because many, many diabetics who relied on it to stay alive can no longer get it because supply driven by the celebrity influencers has outstripped supply. Those willing to pay the most for it will get it, leaving nothing for the prescription users. This is having a huge impact on their health. I was using it for a bit of both but stopped at the end of last year because I could no longer get my prescriptions filled. For all of last year it was a worry and struggle and I'd be in the position of reducing my dose lower and lower to make a pen last longer and longer in the hope my chemist could find another box somewhere.

I weaned off it. I won't go on it again. I did lose a bit of weight at the start, but I wasn't as fat then as I am now. My thyroid results were better then and I was fitter. Since then I've had a lot of stress and obligation piled on me, my weight has increased but I can see it's water, it literally sloshes in places, and my thyroid results are worse. So I'm just focusing on thyroid again. I didn't have side effects with Victoza. But there are some terrible side effects out there. It wasn't successful enough for me to make me want to go through that again. Plus I think it should be available to actual diabetics first.

Sunflower64 profile image
Sunflower64 in reply to FancyPants54

The problem is that people who are not diabetic but ’only’want to lose weight should use Saxenda, not Victoza. But, since Victoza is covered by health insurance in many countries and Saxenda is not, many patients ask for Victoza instead, just like they ask for Ozempic instead of Wegovy. If obesity was considered a chronic disease and weight loss drugs covered by health insurance the same way diabetes 2 drugs are, we would not have this problem. I hope the arrival of new drugs from the US (Mounjaro/Zepbound) will improve things slightly.

Some have great results with these drugs, others not. I think that, more generally, hypothyroid people will find it harder to lose weight even on such drugs as we do not necessarily gain weight from overeating. For binge eaters who need to reduce their calorie intake, they may work great, but not if you are overweight due to low T3.

Plus, these drugs are very expensive and most people regain the weight lost if they go off them. So, before starting on them, you need to ask yourself if you are willing to stay on them long-term, or even indefinitely?

FancyPants54 profile image
FancyPants54 in reply to Sunflower64

Saxenda is also long-term out of stock in the UK and GPs won't prescribe Wegovy. These drugs can have serious side effects, and they have not been around long enough for us to know of them all in a wide population of users. I would not want to use them for life if I were not diabetic. It still annoys me though, that I can't get it even though I am prescribed it, because the sudden explosion of celebrity led weight loss usage has meant supply does not meet demand and won't do for some time. Years possibly.

Sunflower64 profile image
Sunflower64 in reply to FancyPants54

When they started prescribing them off-label for weight loss, doctors thought they were a quick fix. They are not. When patients go off them, they typically regain 2/3 of the weight lost rather quickly. These drugs are not just appetite-suppressants, they also affect important weight-regulating hormones like insulin and leptin.

I personally believe the risks of severe side effects, such as pancreatitis and thyroid cancer, are exaggerated. It seems they are extremely rare, and that mild side effects, such as nausea, tend to go away quickly. To me, the main problems are availability and long-term costs.

Faith442024 profile image
Faith442024 in reply to Sunflower64

This information about potential pancreatitis is enough to put me of vegovy as l'm still struggling with my recovery from pancreatitis. Ill try regulating my thyroid levels first and vitamins and will see what next xx

Sunflower64 profile image
Sunflower64 in reply to Faith442024

I think Wegovy and Ozempic are contra-indicated in patients who have had pancreatitis or thyroid cancer.

pennyannie profile image
pennyannie

Anna - no one who replied to you is going to see this - I found it by chance as you pinged me to say you liked what I had written - and came back to see if you had replied to anybody -

this forum gets very busy and we tend to write as fully as possible and then move on to the next person asking for advice on blood tests or whatever.

If you want to reply to a certain person you need to press the reply button within their reply to you and then you should see their name come up as you start writing to them and they are sent an email telling then they have a message.

To make a general reply - and not looking for any direct answers - you can go back into your original post - press the More button and then go into edit - then go to the top of your post and add each persons name you wish to include but put @ directly before their name and their name will come up as you type it - press the named option - and their name turns blue in print and they are sent a message to come back to your post.

Hope that makes sense :

Faith442024 profile image
Faith442024 in reply to pennyannie

Thank you so much xx

Jaydee1507 profile image
Jaydee1507Administrator

Have you had a full iron panel and know its safe to supplement iron?

What was your ferritin result?

Any type of magnesium is fine if it suits you. Be sure to take it 2-4 hours after Levo as it can affect absorption.

Faith442024 profile image
Faith442024 in reply to Jaydee1507

Hi Jaydee1507What kind of full iron panel are you referring please?

They checked my ferritin only

32uq/L ( 13.0 - 150.0)

Thank you re magnesium xx

Jaydee1507 profile image
Jaydee1507Administrator in reply to Faith442024

Its possible to have too much iron which can make you unwell which is why its suggested to use food where possible to rise your ferritin level unless you've had an iron panel and know you have room for a supplement.

Usually its suggested to eat chicken liver pate twice a week (so long as you're not vegan or vegetarian). Increase red meat.

Faith442024 profile image
Faith442024 in reply to Jaydee1507

Hi Jaydee1507

Oh l see thank you for that.

I've never tried chicken liver pate so lve just checked the recipe and one of the ingredients is brandy which l can't have alcohol at all.

Is there any alternative please?

Thank you kindly

Anna

Jaydee1507 profile image
Jaydee1507Administrator in reply to Faith442024

There are alcohol free recipe versions, just do a quick google. wholesomeyum.com/recipes/fr...

The shops have different brands which probably have different recipes too.

Faith442024 profile image
Faith442024 in reply to Jaydee1507

Oh l see!

Thank you so so much for that valuable information xx

Faith442024 profile image
Faith442024 in reply to Jaydee1507

I don't eat red meat at all, l never had, so l guess it's time to start!

Thank you xxx

singlechip profile image
singlechip

I am on Ozempic at the moment. It did wonders for me. But I heard that Wegovy is even better. So that's what I am planning to get next. I am fortunate to have my T3 on NHS but have to get Ozempic on my own without prescription online. Being both fat and hypo made my life a misery. So I think I am finally improving, not only in how I feel but as well in how I look. Hope it will continue (knock on wood)

helvella profile image
helvellaAdministratorThyroid UK in reply to singlechip

As Wegovy and Ozempic are both semaglutide, I'm not sure why one would be better than the other?

Yes, I know there are differences in approval and some slight differences in available dosages.

singlechip profile image
singlechip in reply to helvella

I don't know. People just say so, that it is stronger, more effective and so on. When I try it I guess I will be able to tell is it true or not.

helvella profile image
helvellaAdministratorThyroid UK in reply to singlechip

The active ingredient is the same, the manufacturer is the same, the excipients are the same.

Obviously, a different dose would be expected to have a different effect. But I am suspicious of this claim.

RedApple profile image
RedAppleAdministrator in reply to singlechip

If there is no difference in cost to you, then perhaps worth a try for your own peace of mind. But if one is significantly more expensive, think about the fact that the branding, rave reviews, celeb endorsements etc. are likely just a big sales and marketing gimmick.

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