I found about this forum today and wanted to share my story. I would like to understand if the changes I am going through are normal for someone on my condition or if I am just getting paranoid.
I had my Total Thyrodectomy in November 2017 - just 15 days after finding out about the tumor. The biopsy was inconclusive, although it point out to cancer.
At the time I had very little understanding of how it would change my life.
After the surgery, it was discovered that the tumor was benigne and that also had a Thyroiditis. I had no problems with my voice and I left the hospital after one day. The surgery took 2 hours more, because apparently my neck muscles where too strong and they couldn't reach the thyroid. After two days I also started taking 125mg of Levo.
I had the surgery in Portugal, although I was living in Netherlands. So after I return to the NL I went to look for a doctor. It took 3 months to get an appointment. Meanwhile my Portuguese doctor told me to increase my Levo dosis to 150mg.
The first consultation with the Dutch doctor lasted 15 min. By that time I had several complaints: tiredness, numb hands, no mobility on my shoulders ( I couldn't lift my arms), weight gain, depression.
The second and the third consultation was by phone. And after doing exams the doctor said that it was all fine and that I had to learn to live with these symptoms like if I was diabetic (??).
Of course, I burst into tears. I was emotionally exhausted, not seeing any improvements in my life. I had stopped doing sports (I played rugby and went to the gym regularly), I couldn't concentrate at work, after work I just wanted to go bed, I was always sad and couldn't stop putting weight.
I then decided to look for a good specialist in Portugal (where I am from), and I got an appointment for August.
I took all my blood test history and all the exams I had done. His approach was completely different, he explain me what had happened to me during the last months. First I had hypothyroidism (125mg and all the depression and tiredness symptoms) then I moved to hyperthyroidism (150mg, more energy but an uncontrollable hunger but without metabolism... 22lbs more).
He reduced my medication to 137mg and explained me that the shoulder pain and numb hands could have been related with the surgery complications.
The following months I started to have a more normal and balanced life. More energy, better mood, happier and started to control the weight gain.
I had physiotherapy for my shoulders and I have now full mobility and am back to rugby and I also do crossfit.
I still struggle with losing weight, which is frustrating because I train so hard all week, and try to eat healthy. I have tried a lot of different diets and nothing seems to work. The frustration leads me back to food and is like a vicious cycle.
I have now started to do Intermittent Fasting, and I see better results. Has anyone tried?
I would like to know if anyone relates to these problems.
Sorry for the long post.
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Fhss
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It seems like some people do have the problems you describe after thyroidectomy. A good thing is that you haven't had to have radioiodine therapy too and you are cancer free by the sounds of it.
Some people can be very sensitive to levothyroxine and getting the dose just right can be difficult. It's possible that people who've had thyroidectomy might find even small changes in levothyroine dose make a difference so getting it just right and maintaining stability can be tricky. Testing FT3, FT4 and TSH at the same time can help you to adjust your dose of levothyroxine more accurately.
If you post latest thyroid blood test results here along with the lab ranges then people will give their opinions.
Being over or under medicated can cause weight gain since your metabolism is affected. You should also have your vitamin levels tested as thyroidectomy and changes in metabolism might affect how you absorb or utilise nutrients. Vitamin D, B12, folate and ferritin. All these need to be good for thyroid hormone to function efficiently.
You could look at diets designed for people with type 2 diabetes. Diabetes organisations have good advice on nutrients for people with metabolic disorder.
It's not true that you have to put up with symptoms after thyroidectomy. Most people can live symptom free but you do have to manage aspects such as nutrition, diet, exercise and thyroid hormone carefully.
Vitamin D most important. Post result on here for good advice when you have it for good advice. What about folate and ferritin, also critical for good thyroid hormone utilisation.
I found that when my B12 gets low my shoulders and arms ache, hanging out washing is too difficult. If they used nitrous oxide during your operation that will deplete your B12 stores. B12 needs folate so that it can do its magic. Ifyou are low on vit D it's difficult to loose weight. Vit D is the sunshine vitamin and we need it in the uk especially in winter, it can give us a low mood too when we are low. I hope that you find good thyroid levels soon.
I have already started reading about B12 and folate.
Vitamin D is already on my daily doses. It really makes a different, specially coming from Portugal.
I have not had a thyroidectomy but have Hashimoto's so hypothyroidism. As far as I know, when you start on thyroid hormone replacement, you start low and go slow. It seems 50 mcg is a common starting dose (unless you are over 70 and/or have heart disease, in those cases, you usually start on 25 mcg). Then, you raise it by 25 mcg every six weeks or so until your FT4 levels are optimal (often, close to the upper normal limit). When that happens, your TSH is often low-normal (1 or lower).
125 mcg seems like a very high starting dose to me. When you were told to raise it to 150 mcg, did you have recent labs that showed that your TSH was high and your free T4 levels low?
Of course, you could also be T3 deficient, meaning you don't convert T4 to T3 well enough. Since you don't have a thyroid, all your T3 must come from the conversion of T4. In that case, the addition of T3 could be beneficial. But you'd need to have your FT3 levels checked as well, and many doctors don't think that's necessary.
Just for reference a fully functioning thyroid would give you approx. 100 T4 + 10 T3 daily.
I believe that if you have lost your thyroid due to a medical intervention both hormones T3 and T4 should be on your prescription.
True, some people seem to be ok with T4 alone but some people do not, and the option should be there, to dose manage with both hormones until you feel free of symptoms.
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