Weight gain after thyroidectomy : I am 63 yrs old... - Thyroid UK

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Weight gain after thyroidectomy

ACP59 profile image

I am 63 yrs old crippled with osteoarthritis , had a thyroidectomy 10 years ago following uncontrollable Graves disease .

I have taken 125 of levothyroxine since then. I was always very active until my arthritis finally became so severe , my mobility is very seriously impared ,recently I could not walk upstairs for 4 weeks as my hip is so painful and knees too.

Despite being on a strict 800 calorie diet since having my condition worsen because my weight gain after my thyroid was removed I am now over 50 lbs heavier than I was

pre mobility problems , as I know weight gain would be no help. My weight started ballooning after my thyroid was removed and I had a strict 1200 calorie diet , until I had to decrease it even more . There are no treats ever . I do have willpower.

But now I resemble a Michelin Man , no exaggeration, below my waist are layers of fat and water , my legs are swollen like balloons as are my knees, ankles and feet . Even though movement is very painful I stay on my feet and walk around the house and garden with the aid of a stick until I can stand no more .

Undoubtedly my lack of a thyroid began this descent into weight gain as I have been on a strict diet as I said beginning at 1200 calories since shortly after my post op recovery ,when my weight began its ascent . If I ate what I liked I believe I could be 20 stones or upward . My question is , can anything help me ?

39 Replies
RedApple profile image
RedAppleAdministrator

ACP59, The first thing to ascertain, is whether you are on the correct dose and type of thyroid medication.

Please post your most recent full thyroid test results (ie. TSH, FT4 and FT3) with accompanying reference ranges.

Also, please mention any other medications and/or supplements you are taking.

ACP59 profile image
ACP59 in reply to RedApple

Thank you for your reply. I have to say my GP is really not interested, when I ring for my blood results all Im told by the " care navigator" after consulting with my GP is " Everything is fine " ! I only have the most basic tests I know , the thyroid function test , and this is all Ive had in 10 years from my GP .

Kimkat profile image
Kimkat in reply to ACP59

Are you seeing an endocrinologist or is it just your GP? If so I would ask to be referred, you may just have a sympathetic consultant.

ACP59 profile image
ACP59 in reply to Kimkat

I just see or dont actually , a GP. But really just book in with a nurse bypassing my GP .

Kimkat profile image
Kimkat in reply to ACP59

In that case perhaps you need to request an appointment with the endocrinologist, prior to your appointment he/she will want full blood tests. Also you are entitled to see your previous tests.

shaws profile image
shawsAdministrator

Yes, is the answer. Although it may take a bit longer than you'd like.

Taking 125 of levothyroxine for ten years and gaining weight would suggest that your dose of levo, isn't/wasn't optimal. Probably always 'in range' and doctors are quite happy with that.

Unfortunately, we have to read and learn for ourselves as few doctors nowadays know very much except to keep the TSH 'somewhere' in range and wont offer an increase in dose).

We do expect doctors to know more than us - not always the case with regard to dysfunctional thyroid glands. I couldn't get diagnosed at all, no matter who I asked what was wrong with me.

Once diagnosed the aim is a TSH of 1 or lower and both 'frees' FT4 and FT3 (rarely test but I think you warrant both 'frees' to be tested.)

This is the method for blood tests for thyroid hormones:-

Always the very eareliest appointment, even if made weeks ahead. It is a fasting (you can drink water) test and allow a gap of 24 hours from your last dose of thyroid hormones and the test and take it afterwards. Request B12, Vit D, iron, ferritin and folate if you haven't had them tested recently.

Everything has to be optimal.

T4 - is an inactive hormone (levothyroxine) it should convert to T3.

T3 is the active thyroid hormone and our heart and brain have the most T3 receptor cells. This allows our body to be 'normal' in everything it is supposed to do.

Many hypo people do well on a combination of T4/T3.

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

ACP59 profile image
ACP59 in reply to shaws

Many thanks for taking the time to reply to me . Ive been plucking up courage to post

shaws profile image
shawsAdministrator in reply to ACP59

No need for courage as the main aim of this forum is to help people who aren't doing so well when they have a dysfunctional thyroid gland.

Many members seem more knowledgeable than the 'medical experts' (I don't include myself in that) but I know what it's like to be undiagnosed'. Not pleasant at all and I had to diagnose myself as no doctor could.

GP phoned to tell me there was nothing wrong. He thought a TSH of 100 was o.k.

ACP59 profile image
ACP59 in reply to shaws

Exactly !

shaws profile image
shawsAdministrator in reply to ACP59

If you'd like to read my journey to be diagnosed, click on my name and it will take you to my page.

shaws profile image
shawsAdministrator in reply to ACP59

This also may be helpful:

stopthethyroidmadness.com/s...

ACP59 profile image
ACP59 in reply to shaws

Thank you so much !

The body needs calories to convert T4 into the active hormone T3. By strictly restricting your calorie intake you could be making things worse by hampering that conversion process.

ACP59 profile image
ACP59 in reply to Lalatoot

I'm becoming terrified to eat . I'm so overweight its making my arthritis even worse .

Have you checked vitamin D and calcium levels? Bone and joint pain can be due to low vitamin D which is common. with thyroid disease.

ACP59 profile image
ACP59 in reply to Nanaedake

I take vitamin D daily in the recommended amount . I havent seen a doctor for over a year due to covid

Have you actually had vitamin D levels tested? When you say 'recommended amounts' what was the recommendation based on?

ACP59 profile image
ACP59 in reply to Nanaedake

Just the bottles !

Nanaedake profile image
Nanaedake in reply to ACP59

You absolutely must get vitamin D and calcium tested. How people store and use vitamin D is very individual and you must base supplements on your current level. You will only k ow how much you need by getting proper testing.

Ask GP to test

Vitamin D

Folate

Ferritin

B12

Calcium (due to thyroidectomy)

On top of thyroidectomy, if female, then menopause can cause rapid loss of calcium.

If the doctor won't do all of these you can do them via reliable online labs like Medichecks. There are others listed on Thyroid UK website.

When you have results if you post them here people will advise. If doctor says all fine still post them, after all, coasting along the bottom of NHS range will not make you feel well and is not the same as being optimal.

You are legally entitled to copies of results. If in England you can register to get online blood test results. Register via your GP reception, ask for the relevant forms for enhanced access for blood test results.

Hello just in addition to the good advice here about what to do just a thought or two. It sounds like you have a lot of fluid retention. I find yoga is really important for me to keep this at bay. I know it’s hard to probably even consider yoga if you’re having such mobility problems but there is yoga for people with disabilities. I teach yoga to people who have v restricted mobility. There are chair yoga classes on YouTube. Have a look. I will too. If I can find a class that looks good I’ll post here.

Definitely though as suggested here, take your health in your hands. Unfortunately no one else can do it for us. Get your blood results and post here and you’ll get lots of support.🤗

Your GP has been terrible. Right now I'd order a private blood test from Medichecks or Blue Horizon or other and get a full picture of your thyroid and vitamin levels. You can pay to get the blood drawn locally. Get at least T3, t4, tsh and folate, b12, D

Then id get on the phone to your Docs ask for a referral to an Endocrinologist saying you are very unhappy with the standard of care provided by the surgery and you really need a second opinion.

Then once you've got your results post here for advice.

As you can tell from peoples replies and you suspect yourself, you're bound to be under medicated or suffering a vitamin deficiency. There is a reason for how you're doing and you can find that out.

You're in good company here. Many have had as bad or worse treatment and those who've been treated well still come here for help as it can be hard to get bloods right.

You can get better. X

Hello ACP59 and welcome to the forum :

I was where you are a few years ago when I plucked up courage to post a question on this forum.

I too have Graves though was treated with RAI back in 2005 and became very unwell around 8 years later with what I believe were the long term consequences of RAI and being monitored and dosed in primary care on just a yearly TSH thyroid function test.

The thyroid is a major gland responsible for full body synchronisation including your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.

Your thyroid would be supporting you on a daily basis with trace elements of T1. T2, and calcitonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg.

T4 - synthetic Levothyroxine is a storage hormone and needs to be converted by your body into T3 which is the active hormone that the body runs on which is around 4 times more powerful than T4 with the average person needing to use/ find / convert around 50 T3 daily just to function.

Your abilty to convert T4 into T3 can be compromised by low vitamins and minerals, especially ferritin, folate, B12 and vitamin D so it's necessary to get these core strength, building blocks measured along with your TSH, T3 and T4 along with inflammation.

You simply need to get the appropriate blood test actioned and then post the results and ranges back up on this forum in a new post and you will be advised what it all means and what your next best step forward is to better health.

If your doctor will not help, mine wouldn't , you have to do this bit for yourself and you will find private blood test companies listed on the Thyroid uk website who are the charity who support this amazing forum.

Commonly referred to as a " thyroid bundle " it's around 10 blood tests and a venous draw. Some of these companies offer a nurse home visit to take the blood for you and ideally you need to have the blood draw as early as possible in the morning .

Do not take your T4 medication for the day, until after the blood draw and fast overnight, just taking in water. If you are taking any vitamins and minerals containing biotin, leave these off for 7 days, and in fact leave off any supplements for 7 days, so we can see what your body is actually holding onto.

Having " lost " your thyroid you have been prescribed monotherapy with T4 thyroid hormone replacement which is normally what happens.

Some people can get by on Levothyroxine synthetic T4.

Some people find that T4 seems to stop being as effective as it once was, and need the addition of a little T3 medication - synthetic Liothyronine to restore / replicate this " lost " thyroid hormone :

Some people find they need to take T3 only as their body is not able to convert effectively T4 into T3 and it is T3 that is the active hormone that the body runs on and kick starts metabolism by converting food into energy to run cellular processes to keep you well.

There is a lot to take in and understand but it does all fall into place like a jigsaw, and once you get some corner pieces established the build is so worth while and you will start your own thyroid journey back to better health, as we all have done through this forum.

You may like to read a book, written by a doctor who has hypothyroidism :

I found Barry Durrant- Peatfield's book - Your Thyroid and How To Keep It Healthy - a relatively easy read and gives you the basic knowledge of how things work.

It is available through the Thyroid uk website, in the library section. and there is also mention there of Elaine Moore who has to be the most knowledgeable person on Graves Disease, and who now has several books published and also runs her own Graves Disease Foundation website and offers help and advice to anybody, anywhere, on this poorly understood and badly treated auto immune disease.

As ever a great read, again. I’m you could say following your path and I’m up to the point of being told a more permanent solution should be taken. Having it cut or burnt out.

My GP rang yesterday and said she agreed a long term solution was the best way of thing about this. However seemed very surprised at my knowledge on the subject and why this long term solution needed to be thought out thoroughly because you can’t change your mind when it’s no longer there. Suffice to say she ended up agreeing with me.

I hope you find your own way forward on this one. Weight gain is my fear too. I look at a few quarter pounders and there on my waist

ACP59 profile image
ACP59 in reply to Billyboy2u

Well I had radiated drink first and within 2 weeks my numbers were right up again which is why I had to have a thyroidectomy . I was slimmer than ever but my health was appalling . I had no more options x

pennyannie profile image
pennyannie in reply to ACP59

So you drank Radioactive Iodine and then had a thyroidectomy 2 weeks later.

RAI can take months to fully work, though i was immediately put on 100 T4 - Levothyroxine.

I can only imagine how upsetting all this has been for you.

I would go back to your doctor, and ask to see an endocrinologist again, you will also bloat from fluid retention and starving yourself 800 calories is not enough. I feel your pain I am struggling too. what I found helpful is taking my levo at night rather than the morning, make sure it's after eating 2 hours.

ACP59 profile image
ACP59 in reply to Culnacille

I think I will try this straight away and see if theres a difference , thank you x

Culnacille profile image
Culnacille in reply to ACP59

Give it at least 10 days to see I found results in 5 days make sure it is 2hrs after eating. Please let me know how you do x

Nanaedake profile image
Nanaedake in reply to ACP59

You might find this interesting about the link between pain and vitamin D deficiency. frontiersin.org/articles/10...

SlowDragon profile image
SlowDragonAdministrator

Do you always get same brand levothyroxine at each prescription

First step is to get hold of GP tests from last few years

Far, far too often people are left woefully under medicated and when on low calorie diet conversion of levothyroxine (Ft4) to Ft3 gets worse ….so it’s viscous circl

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.

Link re access

healthunlocked.com/thyroidu...

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

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Ask GP to test vitamin levels NOW

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

SlowDragon profile image
SlowDragonAdministrator

Guidelines on dose levothyroxine by weight is 1.6mcg per kilo of your weight

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).

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

Guidelines are just that ....guidelines.

Some people need more ……some less

healthunlocked.com/thyroidu...

Im a Thyroidectomy patient as well and YES the weight gain is monstrous as well as arthritis that increased after the thyroidectomy….when you add Menopause and then add in no thyroid you have a recipe for a weight gaining storm which in my opinion has nothing to do with the arthritis pain and its my opinion that being without female hormones and thyroid hormones is the perfect recipe for arthritis even with medication its not the same as having your body make its own. Agh!

ACP59 profile image
ACP59 in reply to Batty1

Thank you so much for taking the time to reply with more information , I am so grateful x

Hi ACP59, good morning. I'm so glad that you posted your concerns on the forum so we could try to help. In regards to the osteoarthritis, I am wondering if you are taking a steroid medication for the treatment of it. You did not mention other medications you may be taking. I am a Registered Nurse and some steroids are notorious for causing weight gain. If you are taking one for the osteoarthritis, this may actually be the culprit causing the weight issue. All my best to you! :)

ACP59 profile image
ACP59 in reply to HappyGirl80s

No ,no steroids just MST and Oramorph

Nanaedake profile image
Nanaedake in reply to ACP59

See the link I've posted above about pain and Vit D deficiency. There is also very recent research about vitamin D deficiency and prescription opiate dependency.

ACP59 profile image
ACP59 in reply to HappyGirl80s

Thank you so much for the information and taking the time to reply x

HappyGirl80s profile image
HappyGirl80s in reply to ACP59

You are most welcome! x

SlowDragon profile image
SlowDragonAdministrator in reply to ACP59

Please get copies of recent thyroid and vitamin testing results that were done by GP over last 2-5 years

Come back with new post once you get results …likely only TSH been tested which is completely inadequate

Meanwhile look a getting FULL thyroid and vitamin testing done privately

Medichecks is on offer if order today

medichecks.com/products/adv...

Only test early Monday or Tuesday morning

All thyroid 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

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