Hi everyone! I was diagnosed with papillary thyroid cancer in January and had my thyroid completely removed on February 18th (6 days ago). I had no thyroid problems prior. The surgeon also removed two parathyroids as well due to their location. I began taking 100 Mcg of Levothyroxine two days post-op. I usually wake up between 3 and 4 am and take the pill and then go back to sleep. I don't know how we are supposed to not eat or drink anything an hour after we wake up in the morning so I just take it while I am still in bed.
My follow-up is on March 17th. I do not know what to expect during the next few weeks before my appointment. I return to work as a teacher on March 4th - I am quite nervous as to how I will be at that time as I know getting the right dose of medication can be tricky. Currently, I am doing well. I do become very hot and dizzy at times and need to sit down and take some breaths.
I am looking forward to reading about everyone's experiences.
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PurpleButterfly7
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Is it possible to delay going back to work until after your follow up visit? If you're full of bounce by the 4th of March all well and good but if not, you might benefit from more time for your body to adjust. I think the adjustment is generally very underestimated by the medical profession.
Teaching is a high stress profession and very demanding with little opportunity to manage your own timings or take a break when needed. You may need to adjust working hours for a while.
Taking levothyroxine in the night is a good idea. I find it practically impossible to leave an hour between tablets and eating and get to work on time so I take my tablets in the night too.
Thank you for your reply. My surgeon originally said one week off of work and then he said I can give you two weeks because of the nature of my job. I could not see returning to teaching full time after one week. I believe I have the option to extend my leave if needed, but of course, my surgeon would need to approve that.
I have read that some people take levothyroxine at night. I also read that it doesn't absorb as well if taken at night. I can't see waking up an hour early every day for the rest of my life to take this medication, but I will do whatever I need to do.
My biggest fear right now is being at work and my levels start to crash. One day at a time I suppose.
All thyroid tests should be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
I am surprised 1/2 weeks is being mooted . I had same op 5years ago. You need more time to see how you are feeling and get hormone treatment right for you .
Keep reading here and see GP for more time off work .
I had no idea what to expect. I will keep reading and see how I am feeling next week and go from there. My surgeon said he would give me what I needed so I don't think it will be a huge problem for him to okay additional time off.
I have read of many people on this forum in a similar situation and it does seem that surgeons are super humans, no doubt with excellent knife skills, but with little understanding of recovery times after major surgery.
Many people do not bounce back in hearing these throw away words spouted by people who have no idea on how well your body will adjust to this " new you and regime " :
You talk already to fearing " crashing " while back at school - what eactly do you mean and what symptoms do you have ?
Please speak to your doctor and explain your concerns as you clearly are not " fighting fit " for a school envirourment.
Ask to have your sick leave extended and maybe start to consider, initially, a phased return to the classroom in due course.
The thyroid is a major glanf responsible for full body synchronisation including your physical, mental, psychological, emotional and spiritual well being, your inner central heating sysyem and your metabolism.
Some people refer to the thyroid as the body's engone, whilst others prefer the image of the thyroid being the conductor of all your bodily parts, from the strings, through to the wood wind and percussion.
Take one step at a time and treat yourself as you would a child on their first day in new surroundings.
Thank you for your detailed reply - very helpful and validating. I have heard that the hormone left from the thyroid takes time to leave the body - 2 weeks plus. I am fearful when that happens I will be working full time and I may experience symptoms. I am not saying for sure this will happen, but it does seem to be the norm for patients to have trouble finding the right dosage for their body to operate correctly. I am not experiencing many symptoms now. I do get super hot at times and dizzy/light headed. I went walking yesterday and was fine, yet when I went to the store the day prior I had to go back out in the car because I became super hot and lightheaded. Not sure if that is thyroid-related, anxiety, or something else. So one fear is what if I feel like that at work or worse. I suppose as I near my time to return to work I will see how I feel. I go back next week for two days. After those days I will see how I feel and adjust from there. They are keeping my sub in the building in case I do need additional time off. I know I need to take care of myself, but as a teacher, I feel a lot of guilt not being there with my students.
I think your health is more important at this point in time and it reads that there is little stablility and seriously can't see you returning to full days in the classroom.
I too haven't a thyroid, as I was diagnosed with Graves in 2003 and had RAI thyroid ablation in 2005 at age 58.
I was first treated with T4 - Levothyroxine but became very unwell some 8 years later and eventally I decided to self medicate as I failed to acquire anything other than T4 - Levothyroxine on the NHS.
I trialled some T3 - synthetic Liothyronine with my T4 and felt improved :
I then trialled Natural Desiccated Thyroid and this suited my body better and I'm now into my third year and am much improved. NDT was successfully used to treat hypothyroidism for over 100 years prior to Big Pharma and the introduction of Levothyroxine and the guidelines and blood test ranges we all now have to fit into.
NDT is pig thyroid dried and ground down into tablets referred to as grains, and contains all the same known thyroid hormones as that of the human gland.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2. and calcitonin plus a measue of T3 said to be at about 10 mcg plus a measure of T4 said to be at about 100 mcg.
Your body needs to be able to convert T4 - which is a prohormone into the active hormone T3 which is what the body runs on and is said to be about 4 times more powerful than T4 with the average person needing to utilise around 50 mcg T3 daily, just to function.
Your ability to convert the T4 into T3 can be compromsed by low vitamins and minerals and its suggested that ferritin, folate, B12 and vitamin D should be maintained at optimal levels, so maybe ask your doctor / endocrinologist to run these for you at your next follow up appointment.
Some people can get by on T4 only : some people find T4 doesn't work as well as it once did, some people need to add a little T3 to their T4 and take a T3/T4 combo, some people can't tolerate T4 and need to take T3 only and some people find they need to take NDT to restore their well being.
Personally I just think, if there has been a medical intervention and the thyroid surgically removed or ablated with RAI that both NDT and T3 should be on the patient's pescription for if, and probably when T4 only does not restore a balance of T3 and T4 thyroid hormones and at a level acceptable to the patient.
Which ever way round this goes, as you will see from the above you have lost your own natural T3 thyroid hormone production and this does represent around 20% of your overall wellbeing, initially the body will try and compensate for this short fall but overtime you may well find this pulls you down.
It is very early days for you, and I presume you are still under the hospital for endocrinology to manage your hypothyroidism.
If you have any results there you wish explaned to you, simply post them here with the ranges and forum members can assist :
There is a lot to read and understand and you might like to dip into the Thyroid uk website who are the charity who support this amazing forum. You will find private companies who will run the blood tests for you if your doctor isn't able plus all manner of information about thyroid health conditions.
Thank you very much for all that information. I am still learning a lot about this and the information you provided is very helpful. When I go to my follow-up visit with the endocrinologist I will request the levels you mentioned be tested and then share them here. Thank you again!
I hope it makes some sense - maybe I'll let you mark me out of 10 !!
Yes, it is a massive learning curve, just remember you can ask forum members anything that doesn't sit right with you ;
Your Thyroid and How to Keep It Healthy is written by a doctor who has hypothyroidism. Barry Durrant-Peatfield writes in an easy to understand manner and I still find the book useful - we now may not have this amazing little gland but we do need to know all that it does so we can compensate for loss, as best as we can.
If you prefer - it's fine to take thyroid hormones in the middle of the night and you then have no problems ensuring that the stomach is empty or thyroid hormones interfered with.
You can take your breakfast at the usual time or whatever suits you. However, when you take levo it should be with one full glass of water (so it doesn't stick in your throat).
Thousands do fine on levothyroxine when they reach their optimum dose.
I do hope you do fine on levothyroxine as many on this forum couldn't, unfortunately. We also used to have 'options' if not improving but most have been withdrawn by the BTA leaving some patients floundering.
Usually called desiccated thyroid - or natural desiccated thyroid (NDT).
My thyroid hormones document has some information about a number of them. The problem largely being finding any available at a sensible price. Several makes have had temporary or permanent withdrawals from the market.
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