Has anyone on here ended up ok after their thyroidectomy. I’m 5 months post op and what a roller coaster of up and down. And stress levels are crazy at times. I’m at the stage now where I can actually feel my poor deflated cells. My shoulders ache, my bones are starting to ache full stop. I never suffered this pre op. And the extreme tiredness is wearing me out. If I have a good day im abs shattered by evening. Waking round like an old woman. My heart rate is different, I feel very vulnerable like my once healthy body could now easily be seen off by a bad cold/flu. Even tho they told my I had graves and needed the op I was well if u know what I mean. My bowels were regular and healthy. I slept well, still sleep but only 5/6 hours now. I feel like the life is draining out of me. Im on 100 levy plus take the vits and minerals to support my body and I exercise. Im serious as to whether to get on the naturethroid now, while it’s early days. And hopefully be right in 18 months or so. But I’m terrified of the thought of winging it alone. Surely there must be some ppl who do ok on thyroxine? Isn’t there? It seems to me that beautiful little gland does much more than even the endos realise. And life can literally not take place without it, and the levy is a poor substitute. But come on guys n guys prove me wrong tell me happy endings pleaseeeee
Success stories post thyroidectomy - Levy . . - Thyroid UK
Success stories post thyroidectomy - Levy . .
You can see posts which have been tagged as "success stories" here :
healthunlocked.com/thyroidu...
They aren't specifically about success with levo or after thyroidectomy, but I'm assuming some of them probably are. 
One thing that would be really useful would be for people who have thyroidectomy or RAI to put a reminder in their diary to come back and tell us how they feel after six months, a year, and annually from then on.
Good idea x
There are not many happy endings after total thyroidectomy on levo only.
Don't waste precious time. Go for the desiccated thyroid.
I'm the same. 8 months post hemi thyroidectomy. Just ramping up to 75mcg of levo. Not happy at moment. I'm not sure if issues are hypo, or levo side effects. I'm sticking with levo for now, and will push for 100mcg if needed, and look at results after. I will then try ndt if levo doesn't work. It is confusing for sure, and doctors have been no help whatsoever.
Liothyronine, known as T3 made a big difference to me but it is currently being taken away from patients by the NHS and you would be lucky if you got it prescribed. Nevertheless you can buy it online (or in Europe for a few euros but you would now need a prescription). The T3 scandal is a story of how the NHS gets some things so wrong. You will find hundreds of posts about it here if you search.
First of all, however, you need to post your latest thyroid blood tests here so that members can help you properly with the right knowledge. Ask your GP for a copy. You are entitled to have this info and read up as much as you can about it here. It may be that you simply need a higher dose of Levothyroxine and many people honestly seem to do well on just Levo, although I am not one of them. I am sorry to say that after thyroidectomy you need to be your own doctor, however, so keep asking and searching,
Thanks hennerton. Have you had your thyroid removed?
Yes, in 2006, as I had rampant Graves. I was actually fine for a few years and then it all seemed to go wrong. I ached constantly and had no stamina and had numerous niggling complaints that I had never had before. Nevertheless, I did not realize for ages until I met someone in the same position, who had investigated what was wrong with her and had come up with needing T3. Then somehow, and I cannot remember how, I found this site. Suddenly I became my own doctor. I asked my GP for a full blood test to include T3 and discovered I was under range in it but over in T4. I now know that is typical of poor conversion of Levothyroxine to the active T3 hormone we need. I saw a private endocrinologist who prescribed Liothyronine and have been on it ever since via my GP. For how much longer, I do not know, as you will see the current situation if you check this site. My advice is to ask for a full thyroid blood test and see how you are. Ask for Free T4, Free T3 and TSH. Also check iron, ferritin, Vit D, B12 and Folate, as they are probably low and you need good levels to feel well. Hope you find a solution soon. It is a misery having no thyroid.
For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.
Essential to test FT3 and FT4 plus vitamins
Private tests are available. Thousands on here forced to do so as NHS often refuses to test FT3
thyroiduk.org.uk/tuk/testin...
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 money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor please email Dionne at
tukadmin@thyroiduk.org
Also request list of recommended thyroid specialists, some are T3 friendly
Professor Toft recent article saying, T3 may be necessary for many. Note especially his comments on current inadequate treatment following thyroidectomy or RAI
I had a full thyroidectomy 6 years ago due to large nodules causing me problems. I went into the operation fairly ignorant, I was told I would need to take artificial hormones for the rest of my life but that wouldn't be an issue and so I went ahead. I didn't realize at the time what hormones the thyroid produces or how the medical profession treats people with thyroid issues otherwise I might not have been so quick to go ahead. Having said that I was put on 125mg of thyroxine the morning after the operation and have been taking it ever since with no real issues. I did have muscle aches and pains for the first few months but they disappeared.
My biggest problem is with the GP. On my current dose I feel well but my TSH is suppressed (0.02 at the last annual test test). Consequently every year the GP wants to reduce my dosage and I have to persuade him to keep it at the same level. My T4 is within range, near the top, no idea what my T3 is but assume it must be ok as I'm still functioning. If I felt unwell I would get a full thyroid panel don't privately and self medicate accordingly. I try to have as little as possible to do with doctors as I've had a few bad experiences with them.
I do think the attitude of the medical profession to the treatment of thyroid issues is appaling not helped by a combination of ignorance and arrogance that seems to afflict so many members of the medical profession but I'm generally a bit of an optimist so I still like to believe that things will change for the better. Meanwhile, yes, there are some people who do ok on thyroxine alone.
Thank you for that, it does give me hope as NDT is last resort. Please tell me do you take added vits and minerals. How is your diet are you able to eat what you want or have you adjusted it? And most importantly how was your energy and stress levels in your first year post op? I understand it’s early days and have to give my body time to adjust. As I say tho I just feel like a deflated tyre struggling to get round. You have certainly given me hope tho. What was your first year post op like?
Diet wise I try to eat healthily but I haven't changed anything since the thyroidectomy. The best advice I was given is eat a wide variety of things and not too much of anything. I would get your vitamin and mineral levels checked (see posts by Seaside Suzie for really good advice) and try to keep them towards the top of the range as they really do make a difference
I think for the first year or so I was more concerned about my voice than anything else, at first I could only croak at people and I still can't sing very well but that's partly my fault as I was given exercises to do by a singing teacher friend and I didn't really do them.
It could be that you need a dose increase. When my GP was desperate to reduce my dose I did try lowering it to 100mg for a while by within a few weeks I felt dreadful so put it back up again and have been fine ever since. It might be worth having a chat with your GP. I may not have much faith in the medical profession but I also know that they're not all bad and some are really good. Slow Dragon's reply gives all the info you need to arm yourself with to make your case.
I think I have been lucky in having relatively few issue. Don't give up and if you cant get a levo dose that works for you then I really would consider NDT or adding T3
Most people get really better with T4 alone; but indeed, it's a complete mess until that you get there...
I recognize the symptoms and I know it's not being easy now for you but stick to it and get your hormone levels where you feel better (slowdragon there gave you good advice, I agree) It takes time...
One particular advice - I have found relief for aching joints with vitD3, it worked wonderfully in providing relief
You details sound very similar to mine after my TT in Oct 2015. Prior to the removal I was fine and not on any medication. After 8/9 months on Levo well, it was shear hell, I joined this site I now self medicate with NDT and have no aches or pains. I am not the same as I was before the operation but getting there. I also do Blue Horizon tests are post the results on here for answers.
Yes they couldn't whip my thyroid out quick enough with no thought about treatment after. In fact they forgot to tell me I would need replacement hormones. I went from strong, fit sportswoman to obese shuffling bed bound wreck constantly in pain. My Dr was useless and I got 2nd opinion from Dr p who put me straight on Ndt. It was like a switch being turned back on. I am still not back to who I was and I crash regularly. I know plenty who thrive on levo only unfortunately I'm not one of them. It can be a bit of a balancing act xx
Looks like you haven't really had any success stories! The last person that posted a similar thread got loads Or maybe they were pre-op. I think everyone's a bit scared to say these things pre-op, because theoretically a lot of people are completely fine after.
I'm just coming up to my 5 year anniversary, and have been self medicating for 28 months.
I suggest that before you think about going on to NDT you confirm you're on the right dose. 100mcg of Levothyroxine is pretty low for complete replacement. Many people are said to do well on Levo, but it's very common for doctors to leave people languishing on inappropriate doses for years!
You need to get hold of TSH, freeT3, freeT4, and ideally vitamins too. Folate, ferritin, vit B12, bit D.
If you get these as mail order, finger prick tests from BlueHorizon or Medichecks it will give you a first taste of what self medicating is like!
I'm too full thyroid removal on Dec 10th 2017 I am suffering Bradley on 125 Levo
Wake up every day hand hands numb
As well all other symptoms any one else get this
Rita
I had a total thyroidectomy about 15 years ago and was put in 150 mcg levothyroxine and felt great until I hit Perimenopause about 2 years ago. I don’t know if what I’m going through now is all Perimenopause or if it’s worse for me because I have no thyroid but I felt great until Perimenopause.
I had a total thyroidectomy just over a year ago and I am only on thyroxine and I am fine and haven’t had any issues at all, my dad & sister have also had TT and like me are also just taking Thyroxine and they are also have no problems, it’s a shame that all you seem to read is the negative things I just hope this gives you hope to know there are people who are well.
Teddy, do you all have doctors who are willing to prescribe a realistic dose of thyroxine despite low TSH?
After my TT I was put on 100 mcg of Thyroxine and as my Tsh has always been around 1.3 I have not needed my dose changing, however my doctor did tell me shortly after my op that they don’t just go by the blood test results but also by how I am feeling.
That's a very enlightened doctor, Teddy, and you are lucky to have him/her. (Thanks for replying ).
Oh this does give me hope teddy thank you. I must say I’m feeling much better on the 100 myself just hope the nails and skin improves soon 😊
I had a total thyroidectomy and was completely fine for two years — and I believe I would have continued to feel well, except that my doctors began lowering my dose of T4 (from 125 mcg to 100mcg), until my TSH was somewhere around 3.5. Now I'm feeling better with a TSH hovering around 1, taking a combination of levothyroxine and naturethroid.
This article (journals.plos.org/plosone/a... talks a little bit about why athyreotic patients need a different treatment plan than other cases of hypothyroidism, in order to compensate for the T3 production/synthesis that would normally be performed by the thyroid.
From all that I've read, most people lacking a thyroid feel better on T3/T4 combination therapy, and on a dose large enough to make their TSH almost undetectable.
Ahh so you can take a combo of levythroxine and naturethroid. What doses do you take?
Hi Andrea,
Right now I take 50mcg of levo and 1 grain of naturethroid.
However, I do plan to request an increase in dosage, depending on how my next labs look. My current strategy is to continue upping the dosage until one of three things happens: 1) my symptoms resolve, 2) my TSH is basically zero, or 3) I develop obvious hyper symptoms.
Also, in case this is helpful, I visited a number of endocrinologists and eventually had to visit a naturopath in order to find anyone willing to prescribe me anything but levo. NDs have also been the only medical professionals I've found that are willing to factor my subjective symptoms into their treatment plan. MDs tended to use my labwork as an excuse to dismiss me without treatment—unfortunately this seems to be a typical experience for thyroid patients. If someone tries to sideline your symptoms, DO NOT let them get away with it. If you have to, keep looking until you find someone who will work with you.
Good luck, and don't get discouraged—with proper treatment, there's no reason why we can't thrive.
You are absolutely right about dosage and TSH level, meawaldrip, but try telling that to most GPs.
Ahhh so you can take a combo, what dose levythroxine are on and what grain NDT?
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Thanks
I mean naturethroid
I had this op 39 years ago I take 150 Levothyroxine and I am relatively well for my age (68)
Yes, success story here. I had a total thyroidectomy (TT) and was initially put on T3 only and I felt great. After ~three months of that I was put on Levo and had to learn a lot and ask a lot of questions (which were not answered adequately by my (stupid) endocrinologist.). Eventually I learned that I had to boost my Levo quite high to generate enough T3 to feel well. If you go this route it is also a good idea to eat two Brazil nuts a day so that the selenoenzymes get enough selenium to facilitate the T4 to T3 conversion. I note that you are also taking the required vitamins - that is good, keep that up.
If that strategy does not work, go the NDT route. It will be difficult to find a source but keep trying, you will get one eventually. I got through 5 doctors trying and now I travel 400 mile round trip to get my NDT - but it is worth every penny and every mile. Don't give up, you will get there.
Hi la great to hear and thanks. Yes I eat 2 Brazil nuts every nite. And have raw organic cacao powder in water with chia seeds. How long did you stay on Levyothyroxine before switching to NDT. Do you your mojo and no aches and pains? How’s hair growth and nails? How long you been on it?
Hi - I had an overdose of RAI to kill off my thyroid (severe Graves). Went undiagnosed for at leasst 9 months as instead of doing a thyroid blood test I was basically being made to feel like a hypochondriac. I feel terrible now at TSH 1.8, FT3 and FT4 in range but low. Pleaded with endo to go back to 75 mcg Levoxyl from 88 as even tho my TSH was at 13 then I actually felt "more normal". Ended p with a comprimise of 75 fofuring the week and 88 on weekends (what a fight). I have since learned that in the elderly TSH rangeshold be around 4.75 for 75-85 and5.0 over that age. That was in 2012. 2014 it said even 6.0 would be acceptable for the elderly. Don't know your age but bringing that to my endo's attention next visit. One website is verywell.com/what-is-the-op.... First when my TSH was 73 I became so constipated that I got a rectal prolapse and and anal leakage which I hate and now even in range I have loose stool and back to palpitations again so must be kind of hyper despite the range. Loose stool doeesn't help a prolapse either. The docs did me in . I did not need double the dose of RAI and I really should have been inthe hospital after as I went into thyroid storm. If only we knew what could happen to us minus a thyroid. Hope you get some answers and feel better. Hugs!
Hi Sug yes indeed if only we knew. I had some symptoms of hyperthyroidism graves pre op but nothing on this scale. I urge everyody now with thyroid problems do not let them remove your thyroid only if absolutely necessary. I seem to be much better on this 100 iv put myself now. Just waiting for blood test now. I’ll post results. Big hug back
Total thyroidectomy
Loss of appetite after thyroidectomy 
