I had a total thyroidectomy in February 2021. I have not felt well for the past 6+ months and getting worse. I went through a divorce from a 27-year marriage as well as possibly being in menopause so I take these factors into account with my symptoms.
I have difficulty sleeping - I sleep, but I feel like I am awake all night, it's quite strange. I feel exhausted, not tired but a deep exhaustion during the day. Extreme sensitivity to cold and heat, hot flashes all day long, digestion issues, blurry vision upon waking, joint pain, muscle aches, among others. I used to exercise every day and participate in a lot of activities and now it's a struggle just to get through the day. While I did experience some sadness after the divorce, these issues have become more severe in the past 6 months which is why I don't contribute them to the divorce. My estrogen levels show post menopause, but progesterone and testosterone are within normal range.
These are my results:
April 2023 (fasting - I did not take levo that morning before having blood drawn)
TSH - .44 (.27-4.2)
Free T3 - 2.57 (2.5-4.3)
Free T4 - 1.4 (.8-1.7)
May 2023 (not fasting)
TSH - .15 (.27-4.2)
Free T3 - 3.03 (2.5-4.3)
Free T4 - 2 (.8-1.7)
Additional results of TSH (not fasting) - October 2022 (.77) and January 2023 (.22)
All of my other bloodwork came back normal and I had a lot of tests. My endo has adjusted my medication. I was taking 8 pills a week and she now has me taking 7.5 pills a week. I take (not generic) 100mcg of levothyroxine.
Since I am at intermediate risk of recurrence since there was some agio-invasion, but the cancer did not spread, my doctor wants to keep me at the low end of the TSH range. Could being at the low end cause me to feel like this?
I am thinking about seeing a functional medicine doctor because I truly feel like my whole body is falling apart.
Thank you for reading!
Written by
PurpleButterfly7
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The thyroid is a major gland and responsible for the full synchronisation of your body which includes your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg.
T4 is basically inert and a storage hormone which needs to be converted in your body into T3 the active hormone that runs the body and said to be around 4 times more powerful than T4.
Some people can get by on T4 only thyroid hormone replacement.
Some people find that T4 seems to stop working for them at some point in time and need to add in a little T3 to replace that little bit lost, when they lost their thyroid gland.
Some others can't tolerate T4 and need to take T3 only - Liothyronine / Cytomel as you can live without T4 but you can't live without T3.
Whilst others find their health and well being better restored taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland and derived from pig thyroids dried and ground down into tablets referred to as grains.
It is essential that you are dosed and monitored on your Free T3 and Free T4 readings/ranges and to be well, this generally means your TSH will be low / suppressed
Did you refrain from taking the T4 on both sets of blood tests ?
Your April fasting results show a T3 at 5.5% with a T4 at 66% -
Your May results - non fasting - show your T3 at around 28% with your T4 at around 22% so your T3 and T4 have levelled out a bit but still too low in the ranges.
I wonder if you are absorbing the T4 well - as 100 mcg is a reasonable dose but your levels look low to me.
RAI is known to trash vitamins and minerals and we do need optimal levels of core strength vitamins and minerals for any thyroid hormone replacement option to work well :
RAI is also know to cause other side effects which I think I mentioned on a previous reply to you a couple of years ago - to find all your posts/replies simply press on the icon marked More - top right on this screen and go to your Profile Page - similarly to read any other persons thyroid journey press on the icon alongside their name in any post.
Do you have any current readings/ranges for ferritin, folate, B12 and vitamin D ?
Thank you for your reply. I didn't consider the RAI contributing to how I feel. I also have started a quality multivitamin.
I did not refrain from taking levo with the May blood test - only the April where I was also fasting.
B12 - 584 (232-1245)
D - 37.4 (31-80)
Both taken in April/fasting
My doctor did not order ferritin or folate unless it is coded differently and I am missing it. I will ask for it when they recheck my levels in about 5 weeks.
OK - so there is little point comparing these 2 blood test results as they were not taken under the same conditions.
We suggest that when on T4 monotherapy you take your daily dose after the blood draw leaving around a 24 hour window from last dose. T4 is a storage hormone it does not matter delaying the dose in order to get an early as possible blood draw, and having fasted overnight and just taking in water prior to the blood draw.
It is generally recommended to have vitamins and minerals at optimal which means at least around a good 50% + through ranges :
Serum B12 needs supplementing and vitamin D is recommended at around 100 :
I aim for a ferritin of around 100 and folate at around 20 : on uk suggested ranges :
It's not recommended to take multivitamins as generally they are of an inferior quality and some need to be taken well away from others and together negate their value.
I'm not sure fasting is of benefit especially when not well - unless I've misunderstood what your fasting entails.
So nonfasting level was .15 and fasting level was .44. I realize you can't compare them, which I don't think we need to because nothing changed in that month, but does it say anything to why my level is so much lower when not fasting? (I only fasted for the bloodwork.)
I will recheck levels 6 weeks after adjusting my medication dosage change.
I also meant to ask how long after taking the T4 did you get the blood draw ?
The TSH is not a reliable measure of anything once on any form of thyroid hormone replacement and you must be dosed and monitored on your T3 and T4 levels and to be well they will be at a high enough level in the ranges that results in a suppressed TSH which I know is what you are concerned about because of your medical history.
OK so that reading is a false low and your T3 and T4 would have been higher at a 24 hour window as we suggest.
It is imperative that you are dosed of your Free T3 and Free T4 readings and we generally feel best towards the top end of these ranges thereby automatically causing your TSH to be low suppressed.
Finally went to a functional med practice after I got to the point where I could barely function. Used to tell people I felt like I was slowly dying. I had a partial thyroidectomy and a few years later was put on Levothyroxine. An Ft4 level of 1.4 is a bit low for me when I'm on Levo by itself. I usually ran a FT4 level somewhere close to 1.9. Most people on Levo by itself will need higher FT4 levels, maybe not quite as high as mine were. When my FT3 was 2.6 I could barely function and was falling apart. However it's not a guarantee that increasing the Levo more and more will increase the FT3 greatly but there's a big difference between a FT3 level of 2.57 and say 3.8. I had to add a little Liothyronine(cytomel T3) to my Levo. You'd be better off going to a functional practice because they're open minded about thyroid treatment.
Thanks for your reply. It’s good to hear from someone with a similar experience. I do have an appointment with a functional medicine doctor and hope that gives me some answers and relief. This has been so difficult as I went from completely fine to so many problems. My endo says she hears this from a lot of patients but did not offer any help - all levels look good to her.
Despite having thyroid issues and even when I had half a thyroid I still functioned normally with very few symptoms that impacted my life.... until they put me on levothyroxine. I wasn't one of those people who begged to be treated. The endocrinologist told me I should take it when my TSH reached 5 so I complied because I didn't want to risk another growth. They only symptom I felt at that time was some slight fatigue but nothing extreme. Good that you know in advance and early on so you can find a different doctor. Endocrinologist provide only the most basic and of course the numbers always look "good" to them. Ha
How much medication are you on and when do you take it?
If you have no thyroid you should ask for T3 to go along with your T4 meds …. Im also thyroid-less and I could NOT function on T4 alone had to have T3 and now that your nearing menopause every issue you have doctors are going to chalk up to menopause and stress so your going to have to start being assertive with doctors.
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