My daughter had her thyroid removed 2 yeas ago. She is now 16 and doing GCSEs. She had been taking 100mcg - 125mcg Levothyroxine on alternate days since then . She had been unwell since the surgery but all blood tests are within the normal ranges. I don't have the results. (She will not grow any further as she has had surgery on her growth plates to stop her 18 months ago - height has stopped. ) She had been exhausted and sleeps as soon as she is home from school, she has gained so much weight she is now a size 18 in clothes. I am a paediatric dietitian and she has been eating about 1200-1400 kcal a day only, she has swollen hands and feet. In the summer her feet are so swollen that she gets tiny blood spots all over them. She experiences tremours regularly. we have discussed the possibility of a T3 containing treatment with her gp, he is reluctant but seems to be coming around to it after recurrent calls from school nurse to bring her home. He suggested changing her to T3 2 x 20mcg per day as he is not sure what the alternative dose would be on a combined therapy. There is no guarantee he will actually do it, we are due to return on Thursday this coming week. I am so desperate for her I am now at the stage where i will try to source it myself via the internet - if only I knew where to get it, but id rather do it with the consent of the GP here if I can Please could anyone advise - re dose of combined therapy or sources of either T3 or combined therapy elsewhere . Help!
Daughter to trial T3 as Gp not sure what dose o... - Thyroid UK
I haven't had my thyroid gland removed and felt bad enough so I always think that people without a gland should definitely have T3 added to T4.
However, it will be very helpful for comments to be made if you get a print-out of your daughter's recent results, with the ranges.
Your daughter has clinical symptoms of hypothyroidism, swelling etc, so that's why it's important to know her results.
40mcg of T3 is equal to (approx) 120mcg levo.
I take my dose once daily but I do know some do split the dose. My reason is that I follow this doctor's advice as he (now deceased) used T3 himself or for some of his patients due to thyroid hormone resistance . Many people believe that because T4 has a long half life and that T3 doesn't that splitting the dose is better. The purpose of T3 which is the active hormone (T4 being inactive) is to saturate our receptor cells and thereafter it's effect lasts between one to three days. Go to the date July 5, 2000 on this link:
It is getting to a dose which suits the person. I am well now with no symptoms or severe palps I used to get on levo. T3 is calming and my one dose lasts for more than 24 hours.
When first beginning and because T4 takes a while to leave our system, I'd take 30mcg to start with, taking pulse/temp several days before she begins (just so you have a starting point). Sometimes temp doesn't come back to what it was but you feel warmer. If pulse goes too fast or she is too hot, reduce dose for a couple of days and if she feels fine stay at that dose. If symptoms return you can add a tiny dose (1/4 tablet) as she might be near optimum.
Usually, if contemplating adding T3 to T4, T4 is reduced by 50mcg of T4 and add 20mcg of T3.
(I am not medically qualified. I have hypothyroidism was very unwell on levothyroxine but now on T3 only I am well. Many people find a benefit of adding T3 to T4.)
Just for your info this is link re someone whose Thyroid Gland was removed:-
Thank you so much for this!!! I am so glad i posted. She is awake now-and I have just read out your reply, she is smiling and says 'a huge thank you - she is not going mad after all'. Thank you for the guidance re gradual introduction and the T4 / T3 combo !!! - she will know what to look out for. Seriously I am so grateful !! if our Gp wont oblige I am determined to buy on-line and let her try. I feel like I have been letting her down for so long and need to do something. Thanks
No-one can possibly understand how one feels if our thyroid hormones are out of whack as they run our whole system, (brain contains most T3 cells - heart can also struggle as well as everything else and I don't understand why the medical profession appear completely unaware of symptoms which we used to be diagnosed with before the blood tests were introduced along with levo.
Along with clinical symptoms (pre blood tests) we were prescribed Natural Dessicated Thyroid hormones which contain all of the hormones a healthy thyroid gland would have produced.
Hi my sympathys to you and your daughter. She is very young to have to cope with this on top of her exams.I was ill until the endo added t3 to my t4.I felt the difference immediately although it is taking a while for all the symptoms of hypothyroidism to disappear. My energy has improved tremendously and feeling more balanced emotionally. However my weight has stabilised but not lost a pound of the 3stone gained.Im keeping positive as ive been told its a long process to lose the swelling all over.My hands and feet are back to normal but thats all.I take split doses of 20mg t3 it suits me best.Im worried my heart rate will get too high without splitting the dose.Good luck to you both.
I've just realised I repeated the link below and it should have been this one (I have amended post too).
When she is on the proper dose of thyroid hormones for her, her weight should reduce.
I often had pulse rates of 140+ on levothyroxine plus ambulance trips. Now on T3 only I rarely take my pulse which is usually, now, around 60/65bpm.
I would consider adding some NDT as well as T3. A thyroid produces more than just T4 and T3 and with no thyroid your daughter won't be getting the other hormones. NDT contains T4, T3, T2, T1, calcitonin and the possibility of other, as yet unidentified, hormones. Calcitonin, I think, might help protect against osteoporosis. So if she doesn't take NDT it might be worth seeing if she can supplement that separately. You'd need to do some research on that.
yes that's what i was thinking - which was why I am keen for to have a combined t3/t4 treatment - I cant tell you how much research I've been doing! yes i was thinking if we cant get a combined she may benefit from a small dose of t3 added ( i am aware this wont have the T1 and t2 though) . Thank you!
I was very unwell on Levothyroxine (T4) after thyroidectomy but am well on T4+T3 combination. Ask your GP Receptionist for a printout of your daughter's recent thyroid results and ranges and post them in a new question so members can advise on dosing. It sounds as though your daughter may be under medicated. If FT3 hasn't been included in the tests ordered by your GP it will be worth you ordering a private thyroid test to check it.
When I was on T3 only I was prescribed 60mcg daily to suppress TSH as I'd had thyCa and your daughter may find 40mcg is sufficient. I would recommend adding a smaller dose of T3 to her existing Levothyroxine dose.
I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
Thank you Clutter, and she has had the T3 tests done - I was told everything was in normal levels but wasnt told the ranges and didn't get the print outs. I will request a print out and post them as you recommend. Yes I was thinking if we cant get a combined treatment a small amount of t3 add would be the next best thing. Thank you!
I've been advised that my daughter shouldn't require any more than an adult her her height, as she stopped growing a few years ago after having surgery to stop further growth, but yes i agree i think the t1,t2 and calcitionin would be better. thank you
would anyone know what kind of dose she would require of NDT? that would equate to the 100-125mcg of levothyroxine she is currently taking?
Why did your daughter have her thyroid removed? And why was she stopped from growing?
She was initially hyperthyroid and having treatment but the treatment wasnt working because they found out the thyroid was growing like crazy and producing ganglion's that were spreading out and growing around the wider tissues, veins and arteries in the neck - it was just going crazy. so she ended up in surgery for 8 hours with a team of surgeons removing it completely as it was too risky to leave any behind.
She corrected me today regarding how long ago she had surgery on her growth plates in her legs to stop her growing - it was when she was 11 - she had endless test to find out why she was so tall, it was estimated that if she was left to grow her final height would have been around 6ft 6inc . she was desperate not to get that tall as she said she felt a freak already - so her height was capped by surgery to pin the growth plates together in her legs. it worked immediately! she is 6 ft 1in - but now feels huge because she is so overweight after the thyroid surgery and being on T4, despite a very strict diet, regular gym sessions and team sports - which exhaust her - but her friends are really supportive.
Your poor daughter, having to go through all that when she was so young.
Depending on brand, NDT usually comes in 60mg or 65mg tablets. You will often find these referred to as "1 grain" tablets. This is for historical reasons. NDT was first developed in 1892 and was the first effective treatment for hypothyroidism. Modern NDT is based on tablet sizes used for the original products. Prior to the development of NDT people with hypothyroidism died slowly and horribly, often in lunatic asylums. It fell out of favour with doctors in the 1960s (?) or 1970s (?) and was replaced by levothyroxine. Notice I said it fell out of favour with doctors, I didn't say it fell out of favour with patients. What is strange is that some doctors have referred to treating hypothyroidism with NDT and/or T3 as "cutting edge". T3 has been around since the 1950s.
My apologies - I don't know why I launched into a history lesson.
If your daughter is taking roughly 120mcg levo, the equivalent in NDT would be approximately 2 tablets, could be a bit more, could be quite a bit less.
People on this forum often decide (when left to decide for themselves) that T3 is roughly 3 times as potent as levothyroxine. So, 120mcg levo is equivalent to approximately 40mcg T3. If your daughter was using the standard UK brand (there is only one) with 20mcg tablets, then she would need 2 per day. Depending on the patient this could be taken as a single daily dose or broken into multiple doses and taken throughout the day. Dosing times, sizes and patterns are very individual and need lots of trial and error to find what works best. Note that other brands of T3 use a dose size of 25mcg per tablet, the UK standard is the odd one out.
The conversions I've given are very approximate.
Sorry for the late reply ive only just got access to the internet today! Thank you so much for that - yes I have found good guidance on the thyroid patient advocacy site for how to gradually change over from one treatment to the next. seriously - a big big thank you!