Good afternoon. Last year I had a total thyroidectomy and many lymph nodes removed from my neck. In January this year I completed the final stage of radiotherapy and am now trying to piece my life back together.
I am on 175mg of levo daily and a blood test about 7-8 weeks ago determined that this was suitable (I do not have full details of the test). I am due another NHS blood test in about 3 weeks time (this is primarily to check cancer markers).
I have lots of questions for other members who have also had complete a thyroidectomy regarding how they have found life without a thyroid, such as:
What changes have you noticed?
Are there things you can’t do now?
How do you manage your symptoms/health through lifestyle?
Do you find colds/infections hit you harder/differently?
Do you have any hypothyroid symptoms? If so, how do you manage these?
Is there anything else that has surprised you since the operation or anything else you wished you knew sooner?
Many thanks in advance.
Written by
Hsaw
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Have you had vitamin levels tested via GP or privately yet
You will see thousands of members on here have to get full thyroid and vitamin testing done via private testing
NHS rarely tests more than TSH and Ft4
Essential to test vitamin levels at least annually. More frequently if vitamin levels are low and need improving.
On replacement thyroid hormones it’s very important to maintain OPTIMAL vitamin levels
Being on levothyroxine often results in lower vitamin levels
For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) it’s important to have GOOD vitamin levels
Frequently necessary to supplement vitamin D and vitamin B complex
Always test BEFORE considering adding any supplement
Brands of levothyroxine
Many people find Levothyroxine brands are not interchangeable.
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz
Accord only make 50mcg and 100mcg tablets
Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord doesn’t make 25mcg tablets
beware 25mcg Northstar is Teva
Northstar levothyroxine being phased out Feb 2023
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva is lactose free.
Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
Teva is the only brand that makes 75mcg tablet.
So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Aristo (currently 100mcg only) is lactose free and mannitol free.
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
I have learnt to be my own advocate. Try and go by how you feel. Read and research lots. I try to follow a healthy life style and make sure all vitamins and minerals are optimum for thyroid meds to work properly. Also plan in times for rest to stop the fatigue setting in as often. Good luck Hsaw.
Hello there, I had a total thyroiectomy in June last year due to graves disease.I have tried to keep my profile up to date with all the trials and tribulations.If you care to read it just click on the picture at the side of my name and there it is.The main thing I learned is not to rush things, take it easy on yourself and allow time for things to settle.Even now I am still adjusting and feel better than I did a few months ago.Hope this helps.
I had a thyroidectomy 7 years ago for pap cancer and I have experienced excessive weight gain, developed psoriatic arthritis and a horrendous flare and emotional distress from lack of doctors support and understanding when Im having issues and chalking everything up to something else never thyroid. To top all that off I also have recurrence started on one side now have it in the other ….Its a never ending struggle.
It took quite a long time to get to “normal” but that changed as I got older. I had radioactive iodine treatment to eliminate my thyroid. I was in my 50s and went on thyroxine (150) for a few years.
Are there things you can’t do now?
I can’t think of anything I can’t do because of my thyroid. My age (79), however has slowed me down.
How do you manage your symptoms/health through lifestyle?
To keep from putting weight on I have to eat healthy foods and I try to walk a mile and a half five times a week.
Do you find colds/infections hit you harder/differently?
Funny thing, because I have a yearly flu shot I haven’t had any upper respiratory problems..except for allergies.
Do you have any hypothyroid symptoms?
For the last six years I have been battling with my primary physicians (moved from California to Hawaii) about my meds. I am now on 100 thyroxine and 2x5 liothyronine, one am and one pm. At these levels I tend to feel hypothyroid and will be working with a new doctor to figure out what’s going on. My T3 and T4 levels test normal. My TSH is <.02 and the endocrinologist says that’s hyperthyroid. My only hyper symptom is not tolerating heat.
If so, how do you manage these?
I tried going to 10 liothyronine morning and night and felt great for a week or two and then had hyper symptoms (shaking hands, anxiety, and tummy problems. When I went back to the 5 twice a day the symptoms subsided but the hypo ones (cramps, return of my carpal tunnel) started to come back. I hope my doctor can help find a middle ground.
Is there anything else that has surprised you since the operation?
Yes! I am amazed how little information is aware for those of us who have no thyroids! Many women find themselves feeling hypothyroid even though the tests say they are hypothyroid. I am a firm believer that the TSH test is not appropriate to be used to decide whether a person without a thyroid is hyper or hypothyroid.
I hope I have answered your questions. My mother was told she was hyperthyroid when she was my age. They cut her meds back so far she was miserable. I won’t let myself get pushed into a box that doesn’t fit me. Quality, not quantity of life is more important to me. I keep being told that I might have all sorts of health problems if I don’t cut back on my meds. My heart and health are good according to all the tests. I will just keep ticking along as long as I can.
First there are a ton of changes for the better. And I did not even realize some of them until it was out. I had the thyroidectomy because two of my nodules size and positioning were affecting swallowing & breathing. I was content to monitor and biopsy but then I came very close to drowning & it is a long story but I became aware that this was due to the above issue. I had not understood that at first but was beyond perplexed regardless as I am a strong swimmer.
I do not regret the thyroidectomy as some do. Thankful for it. (And of course some have no choice to have it)
Are there things you can’t do now?
That is so hard to answer as aso many things are an unknown for me as to what is the actual culprit.
I felt fantastic on early hormones, better than I had my entire life. Which was a weird surprise. I felt like I was on drugs, laughing. And then an endocrinologist took me from 112mcg to 200 mcg in one go (and then to 225 mcg) and my body never recovered from it & unsure if it will.
And I have PA/B12 deficiency so it is always a who knows where it is the thyroidectomy, or the hormones themselves or another issue at hand.
.....**** Will leave it there for now & try to come back to it is 2:30 am here. ***
I had my thyroidectomy 12 weeks ago. I have debilitating fatigue. I can’t exercise yet. I am very calm as a human being. Not a lot phases me apart from drs telling me my fatigue is in my head. The hardest part post surgery is working out what medications will work and at what levels that will restore you back to being you. That’s the hardest thing
I had my thyroid out in two halves (1994 and 2008).
Initial phase after operation there is scar care. Rubbing a small amount of something like E45 into it in small circular motions twice a day really helps it settle and reduces risk of hypotrophic scarring. I always wear sunscreen on my scar April to September as scar tissue is at increased risk of burning in the sun and then is more likely to pigment (and be more noticeable). Both these points I learned from my student Occupational Therapy days with a burns specialist of all people
Next there is dosage. I didn’t actually need any medication after my partial thyroidectomy, but my starting dose of Levothyroxine after my total thyroidectomy resulted in a TSH of 32.2!!! I learned I had to be my own advocate and proactive at asking for increased dosages. Things do change over the years too with age etc.
I am now on another journey as I have switched to NDT about 2 years ago, having finally gained the confidence to do this.
Main take home, listen to your body (you know it best) and don’t be afraid to advocate for yourself.
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