Overactive thyroid - considering thyroidectomy but I really dont want to gain weight :(

[Sarahmc_8630]

Hi there, I've been overactive for some time now and initially didnt have any weight loss although now Ive lost abt 6lbs in a month, despite eating lots, bad skin, hair falling out, night sweats and constantly tired. So Dr has suggested a thyroidectomy but I am super concerned about gaining lots of weight. Ive never weighed more than 8 stone 7 and am currently just over 8 stone. How can I prevent the weight gain? Would T3 do this? Would I have to buy this privately myself?

[LouiseRoberts]

I think you may be jumping the gun slightly talking about T3 already and even considering buying it privately!

I'm sure there are quite a few overactive people on here who will be able to help you with your queries and worries about your condition and a possible thyroidectomy.

I would suggest posting your latest thyroid blood results with the ranges and any other information about your current thyroid health as this will help people to better offer informed information and support.

Louise

PA to CEO

Thyroid UK

[Saggyuk]

To be blunt, i'm not so fussed about what weight I am if I feel healthy and energetic and this is my priority. Being skinny won't make me enjoy life - energy will?

I'm not expert on hyperactive thyroid and possibly others will come up with other options you can try first who know more as I would look into my options hugely before such a drastic measure and read up on everything so i can make a more informed decision. However, I have a friend who has graves and he is very bothered about the changes it has made to his eyes/face and if I had got to the point where I had tried literally everything and nothing had helped, I would be more fussed about the possibility of this.

Some find going gluten free reduce antibodies so this may be worth a try and anything else that help reduce inflammation and help balance your immune system - I'm sure others who are more knowledgeable on hyperactive thyroids will come and advise soon enough

Personally, when I am underactive, the most weight I have put on because of this is 1 stone or maybe 1.5 as everything slows down including digestion so I find i can't eat that much?

It would be worth you posting all your blood test results so that people can have a more in depth look at your situation.

[JOLLYDOLLY]

Hi Sarahmc_8630,

I was born was a partial non working thyroid and the medication is my life line basically, as I have no function at all, which would happen to you, should you have the surgery. I have to say, I am alarmed and horrified that your Dr would recommend a thyroidectomy unless it was absolutely necessary and/or something that non of us like talking about the 'C' word.

To get the dose correct on a underactive can be as bad as being overactive and the symptoms and conditions that come from it, can leave its toll on your body.

I am now on the right dose for me (which was my original dose before my problems began). My dose was dramatically reduced by a GP who considered that she knew what she was doing, but she didn't and for the last 20 years of my life, it has been hell. Dramatic weight gain, (never had a problem before) skin problems, hair loss (to a degree), oedema (which partly caused severe pneumonia and damaged legs), very heavy periods, (hospitalised once), Fertility problems (never had a problem before) It has caused anaemia, B12 deficiency and Vitamin D deficiency also. Ironically it was a Gynaecologist that did some routine blood tests, that proved my thyroid was completely out of kilter and referred me to a Endocrinologist. By the time I saw her, I even had jaundice. I was so sleepy, I would sleep for more than 12 hours and still feel like a zombie.

It is only now 20 years on, that I am starting to feel the benefits of being on my original dose 200 mcg of thyroxine and 20 mcg of T3 lithyronine (which in the UK they are trying to stop due to price nothing else). It is also the first time in 20 years I am not anaemic either. Although I am on medication for life.

If I was in your shoes, please please seek a second opinion before doing anything so drastic. I understand being overactive can in some cases be worse than being under active. I have little faith in the NHS/medical profession on these matters, but saying that, there are a few good Endocrinologists who know what they are talking about.

If you live in the UK, getting T3 (lithyronine) is a nightmare especially for those recently prescribed. It is so expensive and the powers that be will give you a whole list of reasons why they won't prescribe it. But at the end of the day it is down to price only.

Even if you got a private prescription, doesn't mean you would get the T3 drug automatically in the UK and it would be so expensive to buy. I think it is around £9.22 per tablet. You can buy it abroad evidently (I haven't done so yet).

I wish you well and hope I have not alarmed you too much feel free to message me. But please, get a second opinion at the very least.

Take care

[Sarahmc_8630 in reply to JOLLYDOLLY]

Thank you so much for taking the time to comment. I will probably ask about further medication before I go down the route of surgery. I am still awaiting endo appt so I will hopefully get sorted soon! sorry to hear of all of your thyroid troubles.. Its just a nightmare isnt it

[JOLLYDOLLY in reply to Sarahmc_8630]

It certainly is and I have been thinking of you since reading your post. Just go with how you feel. No one understands unless they have thyroid issues/conditions. The amount of times, people have raised their eyebrows at me, as if to say "yeah yeah yeah, excuse after excuse" even to the point of being called moody and lazy. They don't get, you physically have not got the energy to do anything, even lift a arm some days. Just remember the "experts" don't know it all. Just wish they would listen to the individual rather than categorise.

Take care and let us know how you get on

[Sarahmc_8630 in reply to JOLLYDOLLY]

Hey, I've just seen this. Thank you for thinking of me, that is really kind. Got my levels bk today & asked Dr to write em down - what do you think of this:

Ts3 is 11.3

Ts4 is 42.7

Reckon I should try and stick to the pru for a bit longer and see how I go?

[JOLLYDOLLY in reply to Sarahmc_8630]

Hi Sarahmc_8630,

To me your levels seem high, compared with mine but you are overactive aren't you - What are you taking at the moment? Did they say what your TSH levels were?

I have no experience with medication for anyone who is overactive other than it can be worse than being underactive. I was just worried that a complete thyroidectomy was a little drastic, which is what alarmed me in your last post.

By having the operation and starting from scratch with medication, I just did not want you to go through what I have. Perhaps someone who has experienced what you are at the moment would be able to help you.

My T3 level was 4.1 (range 3.1-6.3).

My T4 level was 18.5 (range 12-22).

I hope you can get the advise and help you need. But please keep in touch and let us know what is decided.

Take care

[Badmonkeymum]

Hi I had a total thyroidectomy nearly 2 years ago after suffering with Graves for round 4 years. I put no more weight on after the op and feel great.

[bantam12]

I never put any weight on after surgery and RAI for Graves.

[humanbean]

Just remember nobody can force you to have your thyroid removed or poisoned with radioactive iodine. And doctors can't stop treating your thyroid if you don't do what they suggest.

You can take as much time as you like to think about and investigate your options. And if you choose to do nothing, and just carry on treatment as you currently do, then that is your right.

Is there a chance you are under-medicated on Carbimazole? Losing weight suggests you might be. Make sure you get hold of copies of your blood test results, including reference ranges.

Then, with each set of test results you could keep a record of what your symptoms were at the time of the test, and what meds and dose you were on. You might find that there is a sweet spot where you feel healthy and happy, and if that is the case then you should aim to get your results to the same place and keep them there.

Nutrient deficiencies are a common feature of any thyroid problem, whether over or underactive. Getting those tested and optimised might help some of your symptoms. But just remember that doctors think any nutrient blood tests which are in range, anywhere in the range, are "normal". But there is a world of difference between having a result which is just "in range" and a result which is optimal.

[Sarahmc_8630]

Thanks everyone for your kind replies. I have been on PTU for some time now and I'll admit at 1st I wasnt great at taking it because I was loathe to take tablets when I had no symptoms! Now I have the bulgy eye, the weight loss etc and I am taking the tablets but I dont know if I'm best now just letting them operate. I have read horror stories though of people gaining 3 stone over a month etc etc and their drs wont help them. Apparently they're really stingy with aftercare & only prescribe t4, not t3 aswell. I dont know what to do.. Awaiting Endo appt anyway so we shall see

[humanbean in reply to Sarahmc_8630]

They are really stingy with anyone who is hypothyroid, however that state is reached.