Firstly a quick run down of my history..diagnosed with graves in 2018 thyroid was serverly overactive went toxic so was removed this may...8th..I was put on levo 125gm I felt jittery my tremors were worse so I knocked it down to 50gm then proceeded to take them till I reached 125gm..I don't feel well at all I felt great after my op no tremors no sweating ect..now I've been on the levo for 6 weeks and I have all the symptoms back..my surgeon who I saw on the 10th of May said he would see me in 2 weeks so far I've had no word from him...shouldn't I be having bloods done to see how the levo is working..I don't think it is..I will ring my surgeons secretary up tomorrow to find out what's going on I feel awfull today and have spent the day in bed as I now feel sick too..this is not what I expected after my thyroid removal..😭😭😭😭
Written by
birkie
To view profiles and participate in discussions please or .
Dropping down from 125 to 50 was to big a jump, if you wanted to reduce dose then 100 would have been better and to stick on that for 6 weeks, if you keep chopping and changing your body struggles as you don't give enough time to settle on that dose.
It's still very early days and you have to be patient, no quick fixes with this so you need to go slowly and give your body a chance to recover.
Thanks for your reply I've been on 125gm for 5 weeks now..as I said I went to 50gm then built up to 125gm in that week my only reservation is I'm not to good with medication I was violently ill on the anti thyroid meds and couldn't take them I went in to thiyroid Storm I was taken off the contraceptive pill because I developed thrombosis and I cannot take HRT..I have chronic fatigue and Fibro and osteoarthritis..my anti body test showed positive my consultant said I was attaking my thiyroid I knew this for years but my GP just put it down to the menupause all hell broke loose in 2018 when I had thiyroid Storm..should I not have a blood test by now as I have been on the levo for 6weeks🤔
Yes you should be tested soon but in that week you dropped from 50 then back to 125 ( to quick to do that) you will have messed it up a bit so probably best to wait another week.
I was under the impression before my TT that all I needed to do was take levo and I would feel as good as I did previously. LIES!!! ALL LIES!!!
After a TT you need NDT and taking any amount of levo will not make you well. Some on the forums have said that levo is sufficient for them after a TT, but I suspect that not all of their thyroid glands were removed, they did not have RAI and those remnants have reactivated themselves. In that case I accept that they are correct but 99% of us need NDT to properly enjoy life anywhere near what we expect
My thiyroid was making me very ill I was like that for over 4 years with my GP insisting it was the menupause..to cut a very long story short thiyroid was removed due to it being toxic I don't wonder given my GP would not recognise it from the menupause..as I said I was very ill with this toxic organ in my kneck I was told I would be on levo for life and go hypo iv had no hypo symptoms all symptoms are of overactive and I should know as I've been like this for over 4 years..is NDT...natural desecated thiyroid?? Can you get it from your GP?? If not where can you obtain it..I'm in to 6weeks levo I know some say this is not long enough to feel well but I don't have a thiyroid to attack anymore so why do I feel so rotten same as I did before.....I'm afraid my GP like many have no idear about thiyroid illness and I know he will insist I keep on the levo with nothing else I want to feel well again I didn't go threw the pain of thiyroid removal for nothing...I'm not prepaid to have a long drawn out medication trial as I did with the anti thiyroid meds they didn't work for me and they put me in to thiyroid Storm I was eventually taken off them when the consultant at the hospital finally owned up to them causing me bad reactions...so sick thought I would be feeling a bit better by now I just feel as bad as before...😭😭
I remember your earlier posts about your TT . I am so terribly sorry you are suffering like this. I had my TT in February and while having struggles with meds, nothing like what you are dealing with.
First, I will tell you from my experience you will feel worse before you feel better. A thyroidectomy is a very tough operation, and you have Graves too like me. You have been barely a month post op. Your body is struggling to recover and your meds have been bounced around so that your body has had no time to adjust to anything.
I would first suggest that you get on one dose of levo and stick to it for a few weeks even if you feel bad. Do not yo-yo from one dose to another. It will make you crazy. If you are in 125 stay there for awhile unless you are allergic to the fillers. You have to give the medication time to work.
Many people do very well on levo alone but your body’s tissues need to absorb it. T4 takes time for all tissues to soak it up. You will have to be patient - and it’s hell - I don’t know about you but I’m not the most patient person in the world. So ..... not the story you want to hear I know. You do not need to go looking for new meds just yet - give what you have a chance to work. It’s too soon, and no one medication is the answer for everybody. Based on your future blood work , you may need T3. You have to take it one step at a time.
Also, because you were hyperthyroid, your thyroid released the thyroxine it had inside into your body as it was removed during surgery. You will feel terrible for awhile until that extra thyroxine is cleared from your body. It takes about a month. That also happened to me. I was in bed for about 3 weeks before I felt a bit more human. It also takes 90 days for the Graves antibodies to quiet down (there is research to back this up).
This also means that the replacement hormone levo you are given doesn’t work right in the beginning . You have too much thyroxine and too little thyroxine at the same time. This is further complicated by your Graves - just because your thyroid is gone does not mean you will feel better right away and you still likely have Graves antibodies. I am 4 months post op and while I am much better I am far from perfect. It will take about a year from the surgery date to feel like yourself.
But I will tell you this - you will feel better eventually. I didn’t think I would for quite awhile - it is only in the last 2 weeks or so that I have started to feel better. It is really a long haul - and I know you feel desperate - I can feel it in your post.
What will really help is your first set of bloodwork. My docs actually ran bloods on me a week after surgery because I was so ill and then again 2 weeks later. They did not expect to find anything conclusive - but they were looking for antibodies etc as a result of the surgery. I hope you are being followed by an endocrinologist. You need one with all the other conditions you suffer from. Get a referral if you need to.
Hopefully you will post that when you get it - in the meantime, hang in there! Give things a chance to settle down and you must accept that you will feel bad for awhile. It’s hard I know - but I am speaking from experience.
In the meantime, sending all the best wishes your way and hoping you feel better soon. Hugs from Canada across the pond. 🤗
Thank you so much for your lovely reply I've been so I'll for such along time knowing it was my thiyroid and not the menupause as my GP kept saying..my thinking was if I get it removed cause the little bigger is making me so ill l will feel much better..all my consultant and surgeon said was I'd be on thiyroxine for life they told me nothing of this and how I'm feeling it's been 6 weeks I'm sure I'm due a blood test but no ones contacted me and I was told it would be my surgeon who I would see..well like you I will give it time I'm interested to see what my bloods are given I feel hyper
Hope you have a speedy recovery and feel a lot better as the days go on I will keep posting on here my experience and recovery
They never tell you. Both my docs , and they were really wonderful, told me I’d be back at work in 2 weeks. Good luck with that! 4 months later and still not back at work. Just be patient and kind to yourself - I’m sending you lots of positive energy. All the best.
Having your thyroid removed, stopsyou being overactive and toxic, but you still have Graves disease. That doesnt go away when the thyroid is removed. Sorry. Maybe if you find a way to calm down the antibodies? At the moment you have the double whammy of underactive plus graves disease... no wonder you feel rubbish.
You will need bloods retested 6-8 weeks after being on a constant dose of Levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 (plus both TPO and TG thyroid antibodies) tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially with Hashimoto's or Graves
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
I had all bloods done on the 19th of Sep 2018 diagnosed day after with overactive thiyroid...had uptake scan in Jan 2019..comfmation of graves then they did anti body blood test which was positive...I'm rining the hospital tomorrow as I've not heard anything about having my bloods drawn after 6/8 weeks I'm not feeling well on 125gm I feel hyper,,will they do all the bloods you mentioned or will I need to request they do them all...confused...my anti body's showed up as positive as I said and I'm sure I'm attacking other parts of my body too..😫😫
Thank slowdragon to be honest the way I've been treated by my surgery is appalling they have made so many errors with my conditions I think they will test me for anything...if not I will kick up a fuss to be sure...👍🏻👍🏻
One more piece of advice particularly for Graves patients - REST AND QUIET ARE ESSENTIAL POST SURGERY for a good recovery. Both my endo and surgeon were adamant about this - if you are able - PEACE AND REST. ❤️
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.
Thyroid Hormones Worse after 9 Weeks on Levo 
Increasing Levo symptoms
Struggling with Thyroid Levels
Latest thyroid results. I'm guessing it's increase of levo needed
