Could anyone give me any advice on how to 'get well' after a total thyroidectomy please? I had mine a week ago, and I know its early days but I'm so tired in the afternoons. I'm on 125mg Levothyroxine and understand I'm healing, but if anyone has any good tips - food to eat/avoid, exercise etc that may help me feel better, I'd be grateful. My mood is a little low (which is very out of character) and I'm concerned about piling on the weight (or is this a myth?)
Many thanks
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Pepperpotts73
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Hi wish you well in your recovery. In my experience 8mths after TT & RAI. I'm suffering with muscle cramps, aches, loss of strength and mass, tiredness, abdominal bloating which has now been diagnosed as reactive gastritis, and various other inflammations.
The one thing I didn't do enough is become more active. Strongly advise walking, or if you can do some mild muscle strength exercises, cardio or yoga.
And diet wise as a male I reduced my daily calorie intake to 1200, reduced carb intake, reduced dairy by alternating days with cereal v fruit v toast at breakfast and almost removed sugar from diet except odd treat! And removed take aways. I cook everything from scratch.
Overall just reduce certain things and see what happens without being to drastic. If things are not going according to plan then try specific diets like med diet or paleo. It's try and learn process as I've discovered from reviewing other patient experiences on forums like this. It's safe to say there is no silver bullet and it's very much down to individual situations.
Vitally make sure your Pysch/mind is positively occupied and you have good support around you help to keep smiling. I struggled with this as i lost my voice for 2 months post surgery, so I've had to manage as much myself. Keep your social life as active as possible to lift your spirits!
Thank you so much for your reply, I'm very lucky that I do have a supportive family and friends, but I'll definitely take your advice on board, especially regarding being active. I am usually active and run, but don't incorporate any strength exercises. This I may have to do... I know I'm not giving myself enough time and it is early days. I hope you continue to get well also!
You shouldn't gain weight if your dose is right. You should have a thyroid blood test 6to 8 weeks after a dose change and adjust until you are on the right amount. Also test your vitamin levels, B12, folate, vitamin D and ferritin. When you get results post on this forum and people can advise. Have you got a target TSH level?
You need a lot of rest. Your body is going through a big change. Taking Levothyroxine can affect your gut so you need to care for it. Probiotics can help. If you get acid reflux then bear in mind it's most likely to be low stomach acid from being hypothyroid.
Thanks so much for your reply. Yes I'm booked in for a thyroid blood test in November, and will post the results. I didn't know that my vitamin levels may be affected so that is really useful to know and check. I definitely underestimated that I would need a lot of rest, and quite naively thought that I'd have the op then everything would be back to normal I'll get some probiotics which are never a bad thing. Thanks again.
Did they check vitamin D levels before your thyroidectomy? It's been found that people needing a thyroidectomy often have coexisting vitamin D deficiency so they might have tested it already so you could check.
It's easy to underestimate the effect of thryoid hormones and thyroidectomy on the body and people around you might expect you to jump back into action as though nothing had happened. Doctors seem to think it's an insignificant operation. However, people would not expect you to act as though nothing had changed if you lost an arm or leg and although thyroid is not visible, the change is as profound as losing a limb because thyroid hormones influence every major organ in your body and every single cell needs thyroid hormone. Your brain, your heart, your stomach, liver, kidneys are all dependent on thyroid hormone.
Although levothyroxine is an effective replacement, taking thyroid hormone through your stomach is not the same as getting thyroid hormone directly into your blood stream from your thyroid. I'm afraid doctors don't understand the impact this has on your system and rarely understand the implications for gut health and absorption of nutrients from food. Very little scientific research has been done.
If your thyroid blood tests are within the range for a normal person the doctor will most likely say all is fine no matter how unwell you feel and how many symptoms you exhibit. Very often they will tell the patient they are somatising or have an anxiety disorder rather than look into the symptoms. That's why we all need to educate ourselves and our doctors. On this forum people have discovered that keeping vitamins mid-range is important and B12 at top of range for levothyroxine to work well but I doubt your doctor will know that. Even if they do, they are unlikely to advise it as the NHS will not provide supplements unless you are below the bottom of the NHS range.
The other aspect you may need to look into is the kind of food you eat. Many people find going gluten free is the only way to keep their gut healthy when they have a thyroid condition and take levothyroxine but you could wait to see how things go before trying it. Best to eat healthily, rest and excercise gently at this stage.
After reading all these really helpful replies, I'm feeling I may need to implement some lifestyle changes, and monitor my health a little more closely, and not just rely on the thyroid blood tests. How do I check my vitamin levels? Is this something that I can request from my doctor? Thanks so much for taking the time to reply. I'm feeling a little more informed and ready to tackle whatever comes my way!
Your doctor should be able to check vitamin D, folate, B12 and ferritin but he/she may refuse if they don't have any grounds to do them. If you have any symptoms that may be vitamin deficiences I would describe them, perhaps write them down beforehand. If you work in an office and don't get a chance to get the sun in summer or winter then I would tell your GP as, along with your thyroid condition, it could affect your vitamin D level and hopefully they'll test it.
There is quite a lot of research proving that people with thyroid conditions suffer vitamin D deficiency but your doctor may not know about it.
Before I supplemented, I got vitamin D tested by City Assay's which is a reliable online lab used by the NHS, so doctors should accept the results but then I found out my GP had done vitamin D but not told me so I didn't know. Since then I've registered online to get all my NHS GP blood test results so that I can keep track and monitor everything that's done and check results.
You can register through your GP reception who can give you a form to complete and a password which you use to register. You need to request enhanced access for blood test results. You should then be able to view historical blood tests as well as all new ones.
If your GP will not test for vitamins, and you can afford it,, you can get them done privately through online labs such as Blue Horizons and Medichecks - you can find the details on Thyroid UK's website. Your GP may not accept the results even though the labs are often the same ones used by NHS and are all regulated labs. If you do have deficiencies though, it might nudge your GP to do NHS tests.
My sympathy and blessings for you . I too had my thyroids removed years ago . First you must allow yourself to take it easy relax when you feel you want to . Take a funny video and watch it and have a great laugh if you can . Don't push yourself to do anything if you don't want to . You did go through a major surgery . Allow your meds to take time to build up in your system and your body to acclimate . Patients is a virtue here . Do you have a big cut ? You might want to put some vitamin "E" on it to heal well . It takes some time for the redness from the scar to disappear . Eat well and supplement with nutrients that help with your thyroid meds . Selenium ,B-12/folate ,B-complex , Vitamin "C" great for healing tissues from surgery . Vitamin "D" . If your up to it and the weather is nice go for a stroll .Most of all don't have high expectations from yourself . Give yourself time to heal . Now is the time to let your family spoil you .
Thanks so much for your reply. My cut isn't too large, but a little bumpy at the moment, and the practice nurse couldn't get the stitches out (as requested by the hospital), but apparently they will dissolve anyway (so I'm hoping this wont affect the healing of the scar). Do you know how long roughly before I can start massaging the scar, and applying cream? I'm assuming it would need to heal first? Thanks for the vitamin advice, this seams to be an important element to recovery, and yes I'll definitely start to get outside and have a walk, as at the moment I'm a bit of a slob and logging on the sofa Thanks again for your kind reply.
It took a pretty long time for my cut to heal . The redness lasted about two years . I don't know if it was just me and that I might have been a slow healer . I think now had I been on nutrients I think I would have healed much faster . But Dr's didn't tell me about vitamins . I had to learn it on my own . I would not message the scar for a while . I would be on the cautious side . Allow yourself to be lazy and a slob all the things that make you feel good . It's about YOU now . Give yourself all the time to heal well . Before you know it it will be behind you . Now is the time to really LOVE YOURSELF AND SPOIL YOURSELF . Let everyone around you know it too .
Ahh thank you so much, some lovely advice. My family have been great this past week, but I'm feeling a little guilty and that I should start getting back to normal! I had originally only planned for a week off work, and how tired I've been, I'm glad that I added next week off also. You're right! I'm trying to see this as a fresh start, and giving myself the time I need to heal. Thank you
Before I had my thyroid removed in 2015 I was not on any medication and had never been overweight.
After the op I was put on Levo, like yourself. After 4/5 months I became ill, I ached all over as well as putting on 10 lbs in weight.
After another 2/3 months I joined this site and put myself on NDT. I lost the weight within a few months and also have no aches and pains.
Before I joined this site I knew nothing about the thyroid but the kind people of here will hopefully sort you out. Good Luck.
Thank you for taking the time to reply! I've never used a community before and I'm so thankful to the people who have taken time to reply to my message. It was very unexpected, and so needed! May I ask what it NDT?
I forgot to say that I start working on my scar as soon as I got home, gently of course.
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5 days post full thyroidectomy op
Post thyroidectomy 
