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 ?
Written by
ACP59
To view profiles and participate in discussions please or .
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 .
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.
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.
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.
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.
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.
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
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
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.
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.
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
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.
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).
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!
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!
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.
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
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Weight Gain on levothyroxine after 18 months 
Weight loss after total thyroidectomy
Hyperthyroidism and weight gain
Thyroid meds and weight gain
Rapidly gaining weight. 
