Hi
My daughter is self medicating with T3.
She was due for a cosmetic surgical procedure last week which she has now put on hold. She now wants to get an accurate picture of her Thyroid levels so has decided to stop her T3.
Can anyone please advise how long does the T3 need to be stopped before bloods can be taken to get accurate results.
Many thanks.
Do you mean she wants to be tested while completely unmedicated? T3 doesn't stay in the system very long so as long as she isn't on any other thyroid meds (ndt or levo) as well as the t3 I should think she would be clear in a week or two, but if her tsh is suppressed it may stay quite low for some time.
May I ask why she wants to be free of meds before testing?
Yes she wants to test while completely unmedicated, she does not take levo. or NDT.
She is self medicating with the T3 and has not informed her Doctor.
Before self treating her TSH was borderline and the Doctor would not treat.
She has recently been to see the Doctor about another condition and she has seen on her notes her border line result, and has now said it maybe a good idea to check it again.
Hard to say how it will work out. Tsh can stay low for a long time.
She may want to think about how she wants to go forward w the possible outcomes. It is almost certain if the test shows she is hypo the gp will want to give her levo, so she may want to think about whether or not that is what she wants.
May I ask why she went straight to t3? Was her last t3 result very low? Does she feel better on it? Ndt might be a better first option, or at least it is more usual to try it before trying t3-only.
She was a patient of Dr. Skinner.
She started with levo. got upto 150mcg. without any improvement. Then poor Dr. Skinner passed away so she tried Thyroid-S, again no improvement, so then went onto T3.
She has found some relief from it but still not 100%.
Ok, so you're not at the beginning if anything but right in the middle of it. Sorry for all the questions, I just was trying to get an idea of where you were in the process.
So to avoid the palaver of going off her meds you could just tell the gp she is being treated privately, but I'm sure you've thought of that already.
Sorry to hear she has been through the mangle a bit. It was awful for all the usual reasons that Dr S died so unexpectedly and the ongoing treatment challenges his patients have faced have been dreadful.
We really think she has thyroid hormone resistance and have got Sandy's info. who is a member here.
At one time she raised to 200mcg. T3 and it was onlywhen on this dose she got any over dosed symptoms, palpitations and racing pulse. Any dose below that her temp. B.P. and pulse are fine.
Lucylocks,
I have no thyroid and had to stop taking 60mcg T3 14 days before I had RAI to allow my TSH to rise from suppressed to >30.
Thanks Clutter,
she has been off T3 for 14 days now and blood test is due soon.
Gosh that was quite a rise in your TSH.
Lucylocks,
TSH was 107 after I was off T3 for 4 weeks on another occasion.
The half life of T3 is approximately 8 hours. So after a week there is no synthetic T3 left in you blood. However, the action of T3 at cellular level lasts much longer, possibly up to six weeks.
T3 medication suppresses TSH far more than is logical from the T3 levels in the blood. So you could still be below range, but TSH be suppressed. And long term use suppresses TSH more or less permanently (I stopped for 8 weeks after being on NDT and my TSH was still zero, with my free T3 waay below range). But I am not sure what constitutes 'long term', it probably varies with the individual, but we are talking years, not months.
So who knows with TSH, but free T3 should give a true reading after a week.
Did you stop all thyroid hormone substitution for eight weeks after being on NDT?
I've reverted to Levothyroxine (from NDT or Levo + T3) for three, five and 10 days, with little effect on TSH, but a rapid increase in symptoms.
Many thanks for your reply Ruthi,
Do not think for one minute the Doctor will test T3 so will get that done privately.
Ruthi, this is interesting news for me. I've been self medicating with T3 for a couple of years, ran out of supply and thought it was a good opportunity to have my blood tested. I was without T3 for 12 days and my TSH was 8.69 (0.3-4.5), fT4 8.4 (12-22), fT3 4.2 (3.1-6.8)
Before starting self medication my TSH was in the upper end of normal range, fT4 low in normal range and fT3 below normal.
So now my endo wants new tests without medication and I was wondering how long to wait with blood tests after stopping my T3.
According to what you write I should wait as long as possible to get an accurate TSH reading?
Well, if your endo is aware you've been taking T3 then he just needs to know that your TSH may, just may be meaningless. How long ago was your break?
I'm amazed your FT3 was so high after 12 days. If you do the maths, you should have used up all but 1.5% by the end of day 2. So you must have had loads in your system, or be a fantastic converter of the little T4 you had produced in those 12 days.
If its only been a couple of years, you will probably get a realistic TSH after two weeks. And what we can be sure is that you will be feeling awful by then. And from what I have read, in some cases TSH never returns to normal after long term medication, so its probably not worth waiting much longer than that.
I also wonder about the high fT3, as it was below range 3 years ago, where T4 was low in range, so I think I was a poor converter then. I'm taking LDN for one year now and I'm thinking if it might have helped me converting T4 better.
I did feel very poorly after 12 days without medication
I wonder where you have your knowledge from. I've read a lot about hypothyroidism, but never read what you wrote about. Can you please refer me to where I can get more information like that? I would love to learn as much as possible 😜
I stopped NDT and was on 150mcg levo instead. My T4 was good, but I didn't convert much at all.
Thanks.
See this is the thing I fear as I am self medicated but just couldnt stop because I was so Ill previously.I have no idea what my tsh was but my t4 and t3 were well below range, almost non existant. I hope it works out for her.
Thank you,
What meds. are you taking?
I take thiroyd NDT taking 5 at the moment as pregnant so obviously couldn't stop now anyhow.
You must have told your Doctor you are self medicating now you are pregnant.
Many congratulations on your pregnancy.
Thank you. Nope I get my own blood tests private. The nhs left me really ill for years and refused to retest my thyroid I had 7 miscarriages and they never once investigated I also have 2 sons with autism that I think is due to lack of t4 in pregnancy, so I dont see its any of their business. It would be more dangerous for me as they would want me to change from NDT to T4 and I was terribly ill on T4 when I trialed it in the past. I also have the health of my baby to think about and think if it ain't broke, don't fix it.
Sorry I did not mean to offend by saying you must have informed your Doctor you are self medicating, of course you have to think of yourself and your baby. I am sorry you have had seven miscarriages, and for the lack of T4 to cause your sons to have autism.
It is so bad the NHS left you ill for years, this is the same as what happened to my daughter. She was fobbed of with a diagnoses of CFS and sent for this pace thing which did not do any earthly good.
We now think she has thyroid hormone resistance hence her self medicating with T3 which is helping her.
Obviously NDT is working for you so stick to it.
It does seem we have to self medicate as the Doctors and even the endo's do not have a clue how to treat us.
I wish you and your family the very best.
The PACE trial was fraudulent. The Graded Exercise Therapy (GET) made lots of people with CFS much, much sicker than they had been, and the CBT part of it was just trying to persuade people they weren't really ill. Nobody got any better on PACE. If you go to the Phoenix Rising forum and look for stuff on PACE you'll find out that some raw data was released about the trial a couple of months ago (on the orders of a court) and it was discovered that the results were just fiction.
forums.phoenixrising.me/ind...
The PACE trial was paid for by the DWP. They wanted to find "evidence" that allowed them to stop paying sickness benefits to people with CFS. Insurance companies backed the people doing the trial too, for pretty much the same reasons.
Hi humanbean.
I read somewhere they were stopping Pace as it was not working but did not know all this was involve. It really is awful, no wonder it did not do my daughter any good.
My daughter did get her sickness money stopped.
Many thanks for the link I will read it in the morning.
I don't think the government intends to stop using PACE/GET/CBT. They are just pretending that the fraud never happened and are carrying on regardless. The findings about PACE being fraudulent never even made it into most newspapers. The outrage and reporting has almost all occurred online, which basically means almost nobody knows about it.
I certainly didn't know about it. Thank you for your post!
No need to apologise, sorry if I came across angry at you. It's not what you put at all. I just get very angry when I think back to just how physically and mentally ill I was at the time and how I was treated as neurotic by my GPs. Has your daughter got optimum vitamin levels? I thought I may have resistance at one point but it took a long time to get my vitamin levels correct, then I could reduce my thyroid meds down. It's totally correct that if your levels are not optimum in regards to vitamins, your body just doesn't take as much thyroid harmoane to all the places it's needed. B12 was a biggie for me also.
I can totally understand how angry you are with your G.P. treating you as neurotic.
My daughter was having a lot of trouble with her sinuses and when the treatment the consultant gave her did not work, he said, I think it is anxiety that is causing it. I couldn't believe it, if they can not find a cause they say it's anxiety.
She takes all the usual supplements but her iron is always low even though she takes high doses, but again the doctor looks no further why this is happening.
Well, when incompetent doctors cannot find the cause of our problems they usually say it's "depression", "anxiety" or "medically unexplained symptoms"!
I once went to Doctor with pricking itching feeling and he said it was anxiety.
It was clearly either to do with my thyroid or low Vit B12.
I said "you Doctors always say that, when you cannot find a reason for a symptom"
He replied "our motto is first do no harm" I thought well not looking further into what is causing my symptoms are doing me harm.
Good point! I admire how honest you were with your GP 
It's often cheaper for them to throw anti depressants at you anyway. I've had many different occasions when I have had that thrown at me. My son when he was a baby had a lump at the base of his skull and of course when you feel something like that on a baby you do panic. The doctor asked if I was a first time mum and basically said I was overreacting about it. I wasn't a first time mum at all. I'd just never found a big lump on a baby before. Then another time I took my daughter into the doctors because she sweats excessively and is very hyperactive I was made to feel like a complete Looney tune and bad parent...again another male doctor! Turns out she has hypermobility and is slightly hyper thyroid wise which took another 4 years to finally find out!
I have had the over anxious Mum thrown at me before, are the Doctors so insensitive to see a Mum can be worried and concerned about their child.
Yes I think it's the same with anyone it happens with though. They just want you to go away sometimes lol
Gosh: any normal parent would feel very anxious if they found a lump on their baby's head! It's a normal parental.....or simply human reaction. It would be worrying if a parent wasn't worried about something like that...
I know I think most parents would panic as you say but he did turn out to be correct in the end to be fair, it was a cyst that did just go on its own. Was just the way he spoke to me and you get that a lot here. There are some excellent doctors but they are impossible to get in to see now. Or they take early retirement because they have so many people to see and end up very over worked.
I just seem to get really bad doctors all the time. Don't trust them at all. My mum sees one that basically neglected my dad and he suddenly dropped dead. She said to him, you can't be that Illl if you are walking around when he called her out. Despite him showing clear signs of an abstruction and throwing up coffee ground type blood, losing weight and saying he was in major pain. About 6 hours later he had a massive internal bleed and died on the spot. I don't get my mum at all! I am still so angry about that as we were all told he had a virus and we stayed away as I had a newborn at the time. My mum and dad were divorced but still wouldn't touch that G.P with a barge pole.
I am sorry to hear what your poor Dad went through, it is so tragic.
I'm so sorry about your dad. It sounds like a shocking case of doctor's competence ;((
It was and I was so angry, still am really. I did write a letter of complaint and they came out with the excuse that his bleed was so big there wouldn't have been anything that could have done even in hospital. Thing is my dad hardly ever went the doctors and the week leading up to his death he was in the surgery, seeing emergency doctors and ringing the doctors also calling them out and not one thought to send him to hospital. It wasn't good enough them saying that. If he was in hospital there was a good chance they could have found the obstruction and done something days before the bleed. We could have sued but then that doesn't bring him back and just makes services even worse for others in future. It just makes me distrust them even more now.
Your poor dad ;(( I'm so very, very sorry ;((
Thank you x
You have a toilet cistern that is slowly leaking.
While connected to the water supply it keeps itself at, say, 90% of expected water level.
Turn off the water supply and the level slowly drops over the next day or week until it is empty. If the stop-cock isn't quite perfect, there might be an ongoing slow fill which results in it ending up 20%, 40% or any other level.
What is the true water level?
(Of course, if the water supply is over-strong, it could actually be continually over-filling and end up at 110%.)
We need to avoid the short-term spike in blood thyroid hormone levels that occur in the few hours after taking a tablet. But we need to carefully consider what we are measuring if we do anything more radical than that.
Thank you, good explanation.
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