Thyroid UK
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Feeling good with no thyroid

Feeling good with no thyroid

Hi everyone.

Ive not posted for a while but thought i would update you all. Im now 6 months post op after having a total thyroidectomy and i have to say im feeling pretty good. After my thyroid went overactive for the second time the carbimazole wasnt working properly so i opted for thyroidectomy as i felt so ill. as you can see i now have minimal scarring and am enjoying life once more climbing the mountains in North Wales. So for anyone thinking of having the op i for one recommend it. I did think long and hard about it though and didnt take the decision lightly. sorry for some reason the image is sideways and i cant turn it on here. But i hope you can see how good the scar is.

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This is great news, we tend to forget about the success stories. Having a glance through your posts you used to have fibromyalgia, do you still have this? Fingers crossed you will continue in good health.

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Hi no i was wrongly diagnosed with that. It turned out i had a tumour in my shoulder giving me pain. That has since been sorted.

:)

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How long did you have to live with that wrong diagnosis, just out of curiosity?

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I knew i didnt have it so i kept badgering the docter for more tests. So only a few weeks.

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Thanks for posting, Kashka, it's good to read success stories.

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I thought i'd add a bit of positivity as its so easy to get disheartened :)

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Good news, Kashka! As you are doing so well, it might help others in your situation if you'd be kind enough to detail your medication/vits and mins. Many thanks. Stevie.

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The only medication i am taking now is 100mcg thyroxine. And im feeling very well on it. :)

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On this forum that counts as positively miraculous, Kashka! So pleased for you :-)

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Thanks. Im very pleased too and hope others will put their success stories on here too , to inspire others.

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... I'm always baffled when I hear this kind of stories... I am a 47 yo man and been hyperthyroid for 3 years. I had total thyroidectomy one year ago.

Unfortunately "T4 only" didn't work for me. After the surgery (June 2016) I spent 6 months of nightmare (nightmare). I was at T4 100mcgr/day for 5 months (I couldn't increase the dose because of palpitations and pounding hearth). Fortunately I

found a doctor that prescribed me T3 and the situation improved.

Removing the Thyroid was my decision, and it was the worst decision of my life.

But there are a couple of things I learnt:

1) Removing the Thyroid is bad (unless you are dying of course).

2) T3 can help in some case.

I know that a lot people without thyroid feel "good", but simply this is not my case and the quality of my life has worsened.

It's a mystery to me how people feel good after surgery. I tested on my skin, you cannot replace a vital organ with a pill and live "normally". At least we should define what is "normal" for you.

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So sorry to hear your story. Im hoping i can inspire others. I hope you get Better and are able to live a normal life . I was told it can take up to 18 months to get medication right. I had my hyperthyroidism come back time and again and it nearly killed me as it got worse each time. I could not function at all. so i feel i did the right thing for me as i dont think i would be hear now to tell my storie.

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I have not had a thyroidectomy nor am I ever likely to as I "only" have Hashimoto's, but it was really nice reading a success story:-)

Best of luck to you!

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Thankyou Anna. good luck with your thyroid journey <3

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I find it so good to read a positive report like yours. I had a total thyroidectomy 10 days ago and am feeling quite well. I am on 75 mg levo at the moment. My only problem is my hoarseness but I am sure that will get better with time. Good luck to you for the future

Eileen

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Hi Eileen. i too am on 75mcg. Theyve dropped my levels as i was a bit too high on the 100s.Early days with the hoarsness. I was like that. but it does get better. i can even sing again now ! Hope you continue to feel well :)

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Thats great to hear....I didnt expect to be soooo hoarse. I never could sing, perhaps I might suddenly be able to 😉

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Hahahaha well you never know!!! :D

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Im 16 days after TT and neck dissection and struggling a bit so its great to hear a success story! I have RAI to go through yet but hopefully I will be writing my own successful post soon x

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Good luck with the RAI Lindsay.Its early days for you but am hoping you too will have good health after. My dose of thyroxine is up and down but they say this could take up to 18 months to right itself. I am still feeling well after 10 months post op. Would love to read your sucess story in the near future. All the best .

Kashka.

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Great news Kashka. Like you I wouldn’t take this decision easily, but sometimes it is the right way to go. So glad you’ve got your quality of life back, it must be a huge relief.

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Ps I wouldn’t have noticed the scar if you hadn’t mentioned it :)

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Thankyou so much Valarian. :)

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Hi kashka I’m glad you feel so well. I however have had a bit of a bad time. I’m 5 months post TT and it’s been a rollercoaster of ups n downs. Im either to low medicated and go hypo with severe depression were I’m planning for my funeral and that. Or I go the other way, we’re I have energy, good mood but the slightest thing can make me have really bad anxiety bouts. My joints and bones are starting to ache we’re they never before, get constipated used to go every day goodo without fail. And the extreme tiredness is wearing me out. After a busy day, by night time I’m exhausted like an old lady. I’m currently taking 100 levy, which I seem too do best on. I also take vits and minerals, raw organic cacao powder and chi seeds mk sure I get enough magnesium and zinc in me. And B vits, and calcium. Iv found low carb high fat diet best. My nails gone terribly brittle and keep snapping. I used to have lovely nails my daughter always remarked on them. Now if I scratch they split, so iv just started on grass fed organic Gelatin powder 1/2 tablespoon per day. Then up to 1 tablespoon once tolerated. I pray that works. It’s not all doom n gloom I do sleep well, and have a wonderful boyfriend, family and friends. I exercise 3 x per week but literally exhausted afterwards. Also got support network within the mental health team. As all the doctors do not understand and just think I’m crazy. When I mentioned to me endo about NDT he was astounded and dismissed the thought immediately. Please tell me how much levy you take, and what you do to feel so good? You look fantastic btw!! It gives me hope reading a success story as I’m afraid there all doom n gloom like mine ha. I’m Andrea btw 🤪😂😊🌈

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Hi Andrea. im so sorry you are feeling so poorly. Well I have put on quite a bit of wieght since my last post . although i have had a "normal" blood test result for the first time in 16 months. I must say i still feel ok. but not as much energy as i used to have. The doctor took me off 125 mcgs and then 100mcgs then 75mcgs. been a big shock to the system but i insisted i go on 75 one day and 100 the next. it sent me over active so i had to drop it again. I felt horrible on 75 so ive now upped it to 75 3 days then a 100 then Three days 75s then a 100 and so on. I felt so well on the 100s but of course they want you to be fat and lethargic these doctors. Makes me so cross. so i do my own thing now. Ive not got to have a blood test till september so i expect they will shove me back on the 75s then !!! It does take a while though to get your levels right. ive been told usually 18 months. I think they may either up yours or bring them down. i try to eat well but i do like sweet things. like cakes and chocolate!! My nails are the same brittle.But i generally feel ok in myself and i sleep really well. I really hope this helps.

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