Hi All, I have been taking Levothyroxine for under-active thyroid for a lot of years now...I was diagnosed about 13/14 yrs ago...I was started off on a 100mg, then went up to 150mg then 175mg then dropped back down to 150mg in 2013/14 which I've been on ever since. I go for my blood tests but never seem to have things explained in layman terms where you can understand what T4 T3 TSH means. Due to ill health I stopped working in 2012 and was medically discharged from work due to severe depression then other health problems jumped on the bandwagon off my up and down life...in July 2015 I was on 175mg off Sertraline depression tablet but didn't seem to be feeling any better and while away in the middle of nowhere recuperating from an operation at my sisters and with no stresses around me I stopped my tablets dead...if I was going to have any side effects I knew I could cope...never been back on them since even though I still have down days (but doesn't nearly everybody...I often think why am I crying today)...I have unfortunately piled the weight on and since finishing work have put on about 2 stone. Recently according to my scales I have put on a stone...very lethargic all the time, no energy, sleeping all the time during the day (can't sleep at night), wanting to go to the toilet all the time, urine smelling sweetly etc, hair thinning out, hot sweats etc...I live on my own and haven't been in a relationship for 7 yrs, I'm 52. My brand of Levothyroxine was recently changed about a month ago and I was feeling worse than ever before...found out from being on another group that Teva the brand I had been given was causing a lot of other people side effects including weight gain, hot sweats etc ( I had a total hysterectomy 20yrs ago so didn't think I would still be going through the change)..a week ago I had them changed back to my normal brand, however I also did an online test for diabetes and the score came back that I should get myself tested which I did do last week...got the results the day after and I need my Hbac testing again in two weeks - (didn't know or had it explained what it was but it turns out it was for diabetes) then the receptionist at Docs said the Doctor needed to talk to me via a telephone appointment, the earliest appt being today...she told me that my T4 is suppressed and has been since October 2015 ( first time I've ever been told this) she wants to see me after my next blood results next Wednesday to discuss what should happen, as I didnt have a pen handy to write my results down I had to phone back a couple of hours later after having a search online about thyroid suppression...she needs to talk to me about bone density, asked me was I on any other medication...answer was no not even for headaches that I get...she mentioned that thyroid been suppressed at my T4 level is normally done if you've had surgery done on your thyroid or had thyroid cancer!!! didn't know you could get that...so I've been thinking all day what does my Levels mean and could anyone explain it to me...I'm normally fairly switched on but when it comes to my thyroid even after 13/14 yrs I still don't understand it....my results were as follows.... T4 is 22, T3 is 4.7 and Tsh is 0.05...any information would be gratefully received thankyou in advance....Sue
What do my results mean in layman terms!!! - Thyroid UK
What do my results mean in layman terms!!!
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Hi Sue
We would need to see the ranges for your results (the number in brackets after the result) as different labs use different ranges.
However, at first glance they don't look too bad. Basically, T4 is the storage hormone (non active) which gets converted into T3 which is the active hormone that does everything it needs to do. The TSH is a hormone produced by your body to request more T4 or T3 to be produced - the way your body asks your thyroid to make more. When your thyroid is unable to respond to this request, your tsh becomes higher and higher - basically your body shouting louder and louder atyour thyroid because it's not being listened too. Your TSH is low so you have enough thyroid hormone probably. I think this is the result that they told you was supressed rather than your T4 as they don't like it this low. The T3 result is the one not normally tested so I think this is what she meant in this regard.
I imagine they will want to reduce your meds as they stupidly often only go by your tsh rather than how you feel.
You should get your ferritin/B12/folate and Vit D levels checked also along with your blood glucose levels.
With all these issues, have you ruled out coeliacs or non-coeliacs gluten sensitivity?
The main website for this forum will inform you about your thyroid - testing - understanding results - vitamins needed - so much information and all in one place. Also if you are on a phone scroll down until you find - Related Posts - where other people have posted on a similar topic. So much to read and learn but it is the only way to find wellness. Dr Sarah Myhill has written a book about diabetes - about prevention. Her website is in her name so have a google ....
They are saying your TSH is suppressed and will be trying to reduce your Levothyroxine dosage to bring it back up in range which is not quite correct. They will probably tell you that as your TSH is suppressed you are overmedicated and suppressed TSH indicates a risk for osteoporosis bone thinning and heart issues. My TSH has been suppressed for over 10 years and I'm fine as are many peoples. TSH is deliberately suppressed by taking higher Levothyroxine doses than would have normally be given after cancer treatment to try stop stimulation of any remaining thyroid tissue that may be cancerous and also can become suppressed eventually after years of taking Levothyroxine or if the more active thyroid hormone T3 or NDT is taken. Your symptoms suggest you are not overmedicated and your other test results suggest this also. Insist they look at the evidence of your SYMPTOMS alongside your blood results. In fact write a clear list out of all your symptoms and take it to your appointment. Treatment of thyroid disease is not as straight forward as they think.
You have had to give up work because of your symptoms which must have been awful for you. You need to read up and understand this disease as medical profession rarely understand it and how to keep you well. Get tested for folate B12 Ferritin and vit D and post results and ranges on here as others have said. If these are low you can feel tired and unwell. Research T3 and NDT (Natural dedicated thyroid) medication. You may feel better adding either of these to your dosing regime as I have done. I am sure if I hadn't researched and taken control of what medication and dosage I was on I would not be working now also. Good luck at your appointment today.
Let us know how it goes.
Sweet-smelling urine can be a sign of diabetes. Different brands of thyroxine can cause problems with different people.
Karen
Sounds like some good advise, mine is the same, but if you feel well, don't let them change it, you may find like myself it's the D3 & B12 will lift those symptoms of tiredness, also B12 did lower my Levo as my thyroid functioned better, and depression just disappeared, do ask for those tests also folate & ferritin, the Drs get confused with graves decease and TSH suppressed, this causes problems with osteoporosis and even that risk is small.