Hi there! Hoping for some guidance, advice and possibly real life results from some members. I was diagnosed with Graves' Disease this time last year. I had every possible symptom you can imagine. I started on Methimazole almost immediately. My numbers have gotten better but are still not controlled. The surgeon at MGH has recommended total thyroidectomy. I cannot do radioactive iodine because I also have Graves' induced Thyroid Eye Disease.
This has been a shit year. Currently, I feel okay but all my thyroid levels are completely NOT normal.
I'm not scared to have my thyroid removed but I've gained 20 pounds since starting Methimazole. 10 back from what I lost during hyper and 10 more from my baseline.
I am so very, very concerned about how I will feel and the potential weight gain after surgery even on levothyroxine.
Give me all the info you have please!
Written by
TeahM602
To view profiles and participate in discussions please or .
I have had a total thyroidectomy but not for similar reasons, so I am going to tag someone who could be more helpful for you. All the best with your decision.
I have not had one regret about having a thyroidectomy, even with finding thyroid hormone replacement very frustrating even a year and a half out. I read a lot of posts of people regretting their choice when I was pre-surgery. So it is important for me to put it in print here - no regrets. Zero. But of course it is a very serious decision & a last resort. Mine was not cancer so it was a 'choice'. It was a goitre that I had been absolutely content to stay away from surgery and just monitor with biopsies. But then two of the nodules became buggers and their size and position impacted my breathing and swallowing. I had a great surgeon, she performed a smooth surgery. I filled the pain meds and took none. I could not believe how instantly free of the 'mass' I felt. All my loved ones commented how wonderful it was to have my voice back - I had often sounded very hoarse for many years pre-surgery.
As far as weight I had heard that over 90% of people gain an average of 20 to 25 pounds after a thyroidectomy. I was all "oh wow look at me, it has not happened". And then it did!
But I was all over the place due to doctors' ego trips with not allowing certain hormone choices, finances for those hormone choices when I got access etc. So it could have been that.
Weirdly enough my weight does the best on levothyroxine only, but not always best for feeling good.
(I have done levothyroxine only, NDT, levothyroxine plus Cytomel (t3)
One thing that helped me feel peace was asking very direct questions to my surgeon. One question was if she had ever impacted anyone's vocal cords. She did not skip a beat, answered yes once she had and immediately told me how difficult the surgery was due to the position of the cancer. Weirdly enough I felt peace that she answered immediately, explained and did not back away from the conversation.
Here's hoping you can get some guidance from those who have Graves' and made the decision to get a thyroidectomy. (Cavapoochowner is in the UK, so it will probably be a bit.)
Lab ranges always needed as they vary between lab machines. It’s FT4 & FT3 (Free / unbound) you need to focus on. The TSH can remain low after a period of hyper. If prolonged (eg hyper for some time before being diagnosed) it can remain low long term.
I have in range Frees / taken carbimazole for years & my TSH remains undetectable.
TSI is stimulating antibodies it confirms Graves . TPO is thyroid autoimmune marker & can be positive with Graves & thyroiditis (known as Hashimoto’s)
How much methimazole are you prescribed? Are you regularly retested eg 6 weekly & the dose adjusted?
Depends on lab range. TSI tend to have low range. Over 400% would mean over 4x normal limit so yes positive. TPO can have variable range eg (0-34) in which case 44 would be elevated & positive. but if range higher is could be classed as negative.
Diagnosis of Graves confirmed so not so important to know.
It’s common for a higher staring dose of metimazole then steadily reduce dose according to FT4 & FT3. I had more mild hyper from a nodule not autoimmune & I initially started on 20mg (carbimazole is UK equivalent). Then was reduced to 10. I went back to 15 shortly then have been on varying doses of 10\5 Alternating days.
It will take around 6 weeks to see how an adjusted dose will alter levels.
Ensure doctors are looking at FT4 & FT3 when judging doses. TSH won’t be reliable. Your FT4 & FT3 should NOT be left to get very low because the doctor wants to see TSH rise.
Graves is an Auto Immune disease for which there is no cure -
and your thyroid the victim in all this - and not the cause of your health issues -
as the cause is one of an immune system malfunction.
Graves is seen as life threatening if not medicated with an Anti Thyroid drug / B & Replace :
While we wait for your immune system response to calm down and your T3 and T4 fall back down into range - and stay in range - with the minimum dose of AT drug -
and allow your thyroid to reset itself after this ' blip ' from your immune system response.
Just flipping the patient from hyperthyroid to hypothyroid - is somewhat simplistic :
I see you are in the States and hope you are also under a Graves Ophthalmologist for your eyes and both specialists in the field of Graves liaise and work together in your treatment regime.
You might like to register with Elaine Moore - who is Stateside and find people and specialists in your zip code area if needing further support - elaine-moore.com
With Graves we become used to higher than ' normal ' blood test readings and definately lower than ' normal ' TSH readings -
It is not normal - not to have a thyroid or have Graves Disease -
sadly there are no special guidelines for Graves Disease post thyroidectomy / RAI thyroid ablation
Patient health and well being needs to be considered more important than a set of ranges and guidelines for so called ' normal - people :
After a thyroidectomy which is the ' cleanest and safest ' treatment option - you will likely need a doctor who prescribes T3 and / or NDT alongside / instead of T4 monotherapy.
If you do need definitive treatment -
you will need to be dosed and monitored on your Free T3 and Free T4 bloods and not a TSH reading -
and you will likely need a doctor who prescribes treatment options for hypothyroidism.
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 and your metabolism.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg.
Some people can get by on T4 only medication .
Others find T4 seems to stop working as well as it once did and need to add in a little T3 .
Others can't tolerate T4 and need to take T3 only.
Whilst others find their health health restored better taking Natural Desiccated Thyroid which contains all the same known hormones as the human thyroid gland and derived from pig thyroids, dried and ground down into tablets referred to as grains.
No thyroid hormone replacement works well until your core strength vitamins and minerals those of ferritin, folate, B12 and vitamin D are up and maintained at optimal -
Do you have these regularly run as we need optimal levels - not just somewhere in a range ?
Totally ' get it ' - you must be prepared to be your own best advocate which isn't easy when unwell.
Please read around and register with the Elaine Moore forum in the States as the more information you have the better able you will be to make decisions.
Graves is a poorly understood and badly treated auto immune disease and living without a thyroid is not the ' walk in the park ' it may have been described as being by mainstream medical and those who have their thyroids.
I had thyroidectomy done 8 months ago and don’t regret it . It removed the swelling in my neck , improved swallowing and, most of all, improved my digestion! I still havre issues with loe calcium levels that cause muscle cramps, because my parathyroids have been disturbed but they are getting better. I am taking 112 mcg and 125 mcg of levoghyrocjne alternate days. It is important to find the correct level of medication for your body weight: 1.4 to 1.6 mcg per 1 kg ofbody weight. My weight had gone up a little but it is now coming down since I started taking extra virgin olive oil ( about 1 tbsp twice a day). You do need a good quality extra virgin olive oil. I found Greek products to be best tasting. If you decide to go for surgery, research your potential surgeons first and try to see them privately. Although I feel a lot better after surgery, I am still not 100% well, with some joint pain and dryness in my mouth due to calcium supplements. But I function a lot better and have no noticeable scar after surgery. In terms of treatment, two of my family members are taking Armour thyroid for Hashimoto and feel better than on Levothyroxine , so I am thinking of following suit, but is an expensive private route. I wish you all the best, Good luck!
Hello there,I was diagnosed with graves disease in 2018.I have been on carbimazole only and carbimazole and levothyroxine as block and replace.I decided myself to ask for a thyroidectomy in 2021 and after a years wait I had it in June 2022.I too have thyroid eye disease and couldn't have RAI.Regarding my weight I lost about half a stone before my graves was diagnosed and treated.I looked gaunt and my legs were like two sticks.When I was treated I put the weight back on and I probably have put on a bit more over the years.We had lockdown and I am also 58 years old so expect to put a bit of weight on due to general slowing down of metabolism and slowing down generally.I have probably put on about 1 stone in all.I weigh about 10stone now and was about 9 stone before my graves started.I haven't put on any weight since my thyroidectomy.
My weight gain doesn't really concern me,and I'm sure I could lose a few pounds by exercising and cutting out sweets,but I am having T4 to T3 conversion problems at the moment, and cutting calories and carbs isn't good for that.It can reduce conversion so that is my priority at the moment.I would rather be healthy than thin.
If you want to read my journey from start to now, I have kept my profile up to date.If you click on the picture at the side of my name,there it is.I do have some other health problems so they are also included.You are doing the right thing finding out as much as you can beforehand.
Overall,I do not regret my decision,but I still have issues I am working on.I feel a bit more in control without all the ups and downs my thyroid seemed to cause.Wishing you all the best.Feel free to ask any questions and I'll answer the best I can based on my experience.
Hey there - are you able to share more about your thyroidectomy ? Any problems since then with joints, medication, feel unwell? Heart rhythm or balance issues?
Im scared for my up-coming surgery and wondering how it impacts you afterwards including many years later.
The most important thing is to find the most experienced surgeon one with plenty of thyroidectomies per year. Once you have found the correct medication you should not gain weight. It could take several months but once you have found it you will be fine. I had mine removed back in 2016 and apart from a hitch in medication have been well ever since and at 77 years old that's pretty good. Good Luck.
Look into the books written by Paul Robinson. He's been collecting patient data from Thyroid afflicted folks for at least 20 years (?) He has a website and a FB page. I've read his Thyroid "Manual" for Hypothyroidism. He's thorough. I'm sure that he's covered Graves, too. Best of luck. It's an insidious disease and SO many have it!
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.
thyroidectomy
Thyroidectomy
Hyperthyroidism and thyroidectomy 
Thyroidectomy and Meds
