i moved to west sussex 6 weeks ago and was told my liothyrinine will be stopped as ccg ban it. awaiting an endo appt. today i had a tsh blood test requested by gp and she rang me this afternoon saying the blood lab had rung her to say my tsh was undetectable . i have always had low tsh as on 50mcg of t3 a day and no thyroxine. the gp said i am at very high risk of having a heart attack and oestoporosis. can anybody tell me is this right. i am worried to death now . she told me to stop it and take thyroxine instead. i dont know if this is because they want to stop it or am i at risk of these things. totally confused now.
is t3 dangerous?: i moved to west sussex 6 weeks... - Thyroid UK
is t3 dangerous?
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katherine107
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T3 is a hormone. All hormones are dangerous if you take too much. But, you can only know if you're taking too much if you test your FT3. I presume your doctor didn't test that?
TSH is a pituitary hormone. It has two functions. One to stimulate the thyroid to make more hormone - you don't need it for that if you are taking thyroid hormone replacement - your thyroid probably couldn't respond, anyway. Two, to stimulate conversion of T4 to T3, but if you'r taking T3, you don't need it for that, either. The pituitary senses that there is more thyroid hormone on the blood, and stops producing TSH. That's how it works. That's what it's supposed to do. TSH has nothing to do with hearts or bones.
The problem is that doctors - and, apparently the lab technicians or whoever that control the laboratories that test the blood - are very badly educated. They don't know what T3 is or what it does or how to dose it. Therefore, it scares them. They don't know much about TSH, either, what it does and why you don't need it. Nor do they know that a simple TSH test cannot tell you if you are taking too much T3. It just can't. And, the result is that millions of people are badly treated and left to suffer by the NHS. And, I have to add, by most health services world-wide.
So, in answer to your question, T3 is not intrinsically dangerous as long as your FT3 is in range. What's more, it would have to be pretty high over-range to actually be dangerous when taking exogenous T3. So, it's not concern for your health that motivates doctors to stop people T3, but concern for their budgets. It's immoral, unprofessional and one of the biggest medical scandals that ever was.
thankyou so much for this. the gp is sending me to endo which i dont want to do . she said also that he will probably not prescribe. she said if i refuse to see them it will be stopped anyway. what can i do?
Go and see the endo and pray for the right outcome. Will she allow you to chose the endo you want to see? You could ask people on here to recommend and T3-friendly endo in your area, if there is one, by PM. Post a new question to do that.
Or, you always have the choice of buying your own T3 - either with a private prescription, or without a prescription on-line - and self-treating with it.
SeasideSusieRemembering
Do you honestly think that you would have been prescribed T3 since 2012 if the endo who prescribed it thought it was dangerous? I'm sure you endo had an excellent reason for prescribing T3 in the first place.
Your GP is either scaremongering or has no knowledge of T3 and what test results are like when taking it.
diogenesRemembering
From what I have seen about attitudes to T3 therapy by the local Clinical Commisioning Groups, you have moved into one of the most backward-looking areas in the UK. If previously you have been prescribed T3 by a registered endocrinologist/GP, your new area has no legal right to stop this. There is a statement by the authorities that no-one who has been shown to require T3 should have that medication arbitrarily removed. More aware people on this forum will give chapter and verse.
shawsAdministrator
No, you aren't going to drop dead. The fact is that all doctors and endocrinologists warn against heart problems if TSH is too low but we, hypothyroid patients need a TSH of 1 or lower. The professionals are unaware of this fact, and assume it is dangerous. This 'in fact' (once we're diagnosed and prescribed) need the TSH to be 1 or lower. If higher we remain symptomatic and I assume - as they seem to know not even one clinical symptom - assume - wrongly - that we've suddenly become hyPERthyroid. Not so.
They are so poorly uneducated in the purpose of thyroid hormones and replace our failing hormones with levothyroxine. Levo is T4 alone and is an inactive hormone and is supposed to convert into T3 (it does so for many but for those on this forum).
We get problems if doctors only look at our TSH level whilst ignoring the FT4 and FT3 (I don't think they even know about both Frees) which have to be in the upper part of the ranges. They rely only upon the TSH. TSH is from the pituitary gland and it rises as our thyroid gland begins to fail, therefore we need it to be low, i.e. 1 or lower.
We, on this forum, may have at one time believed 'old wives' tales' but nowadays this information is coming from those who are supposed to be knowledgeable in all things thyroid. Why do they seem to believe and pass on stories of osteo or heart attacks? They are confusing this with hyPERthyroidism.
naturalthyroidsolutions.com...
thyroiduk.org.uk/tuk/testin...
I take T3 only and am much better than when I was on levo alone. You would think in this 'modern era' that 'old wives tales' wouldn't be believed by professionals but your doctors and endocrinologists are wrong.
thyroiduk.org.uk/tuk/thyroi...
excerpt from the following link:
" A low or suppressed TSH on replacement therapy is not the same thing as a low TSH in primary,hyperthyroidism. IF you continue to suffer from the symptoms of hypothyroidism, you have the right to demand that your
physician give you more effective T4/T3 (inactive/active) thyroid replacement therapy. Your physician can either add sufficient T3 (10 to 20mcgs) to your T4 dose, or lower your T4 dose while adding the T3. The most convenient form of T4/T3 therapy, with a 4:1 ratio, is natural desiccated thyroid (NDT-- Armour, NP Thyroid, Nature-Throid). If you have persistent symptoms,
ask your physician change you to NDT and adjust the dose to keep the TSH at the bottom of its range-- when you have the blood drawn in the morning prior to your daily dose. This may be sufficient treatment, but IF you continue to have persisting hypothyroid symptoms, and no hyperthyroid symptoms, ask your physician to increase the dose to see if your symptoms will improve, even if the TSH becomes low or suppressed. You can prove to your physician that you're not hyperthyroid by the facts that you have no symptoms of hyperthyroidism and your free T4 and free T3 levels are normal in the morning, prior to your daily dose. They may even be below the middle of their ranges. Your free T3 will be high for several hours after yourmorning T4/T3 dose, but this is normal with this therapy and produces no problems. You should insist that testing be done prior to your daily dose, as recommended by professional guidelines. If you have central hypothyroidism, the TSH will necessarily be low or completely suppressed on T4/T3 therapy.
In all cases, your physician must treat you according to your
signs and symptoms first, and the free T4 and free T3 levels second.
Are you aware to have a gap of 24 hours between last dose of levo and test and take it afterwards? Also take hormones with one full glass of water, on an empty stomach and wait an hour before eating. Food and caffeine interfere with the uptake of the hormones.
I had my dose only about an hour before I had blood test unfortunately. Gp has said t3 will be stopped. I need to take her something which proves I need t3. Not sure what. I don't think she will read all this info on here.
That's why your blood tests are 'out of kilter' If we take any hormones just before a blood test they will be high.
Ask your doctor for another blood test and say you took your T3 just before and you that's the reason for the high result. Lets hope she will take another as many haven't a clue that thyroid hormones have a diurnal cycle. In that case make sure there is a gap of at least 12 hours between your dose (or take it at another time). I have always left 24 hours gap and I haven't had adjustments made.
I doubt they know that there is a 'cycle' between taking thyroid hormones and the test.
Method for the best results when taking thyroid hormones.
Some take theirs at bedtime - in that case (if taking levothyroxine) miss this dose and take after test and night dose as usual.
If taking a.m. dose, miss this and take after blood test.
If taking T3 a 12 hour gap is best.
Always take thyroid hormones with a full glass of water and wait anhour before eating. Caffeine can also affect the uptake of hormones.
I have just noticed on my online prescription gp has cut my dose by 10mcg. Are they allowed to do this.
No
They need to keep dose the same as previous until you can be seen by endocrinologist
If endocrinologist wants to reduce T3 it has to be done incredibly slowly.....2.5mcg reduction maximum and Levothyroxine added/introduced instead
This is terrible. Gp told me today that I was at high risk of heart attack and oestoporosis and advised to cut down. I refused but she has done anyway reduce dose. Have been prescribed for last 8 years by a really nice endo who said I would benefit from taking it. Is there anyone I can complain to? I have only just joined this surgery and never seen a gp only nurse who requested a few blood tests as a new patient. One was tsh but not t3 or t4. I feel so depressed and I know I will feel so fatigued and terrible without the 10mcg she has abruptly stopped.
Yes, you can complain, but I think you might find all goes better if you go via PALS, forgotten what it stands for but its Patient ??? Liaison Service. Good luck
I was also told by nurse that my cholesterol was excellent as she tested it so I can't see I am risk of heart attack.
They have no reasons to reduce your dose if you feel fine on it, except if the doctor is going by the TSH alone and, like lots of other doctors, seem to believe (in an old wives' tale) that we will be come hyPER if TSH is too low. In actual fact many of us feel much better with a TSH of below 1. Also they shouldn't reduce our dose without first testing the Free T4 and Free T3 (I doubt they know this themselves) as these should be in the upper part of the ranges - not middle or lower).
I would ask your old gp for copies of letters from your previous endocrinologist who prescribed in the first place. Secondly could you ask to continue seeing your previous consultant and get your new gp to refer.
I have letter from 2012 from old endo but unfortunately he has left now. I am fuming with this new gp
But a letter from an NHS endocrinologist is proof that you are entitled to be prescribed
See point 1 - If well and stable on T3
british-thyroid-association...
Obviously it's all about cost. Each UK tablet is about £7.35 - so 50mcg dose Liothyronine is approximately £18.50 per day
Yet T3 from Germany is only 30p per tablet.....so 75p per day
I just don't have energy to fight this and know my health will get worse. It's just awful if it's about cost . Surely health is more important.
Present your letter from endo that said you have clinical need
Meanwhile make an appointment to see private endocrinologist. Email Dionne at Thyroid Uk for list of recommended thyroid specialists.
Before seeing any endocrinologist privately essential to get Full Thyroid and vitamin testing
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
If/when also on T3, make sure to take last dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
thyroiduk.org.uk/tuk/testin...
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Come back with new post once you get results and ranges
Hi I won’t add anything on the safety aspect and timing of bloods, others have covered that very well. Unfortunately T3 is on the hit list and will be deprescribed unless you fight it. Suggestions... There is a RMOC guideline that was issued in November and is about to be slightly updated it is the national guideline on T3 until NICE, the BTA have issued a statement that says patients need T3 and to not suddenly withdraw, write to your MP, consider contacting the press, find an NHS Endo who will prescribe it even if it means going out of area, get your clinical records and show you have clinical need. I’m sorry you are in this position but unfortunately to keep T3 because of its cost means fighting for it.
katherine107 in reply to
Thanks for this. I will try my hardest.
in reply to katherine107
Is there a heath watch team in your area? They have been very supportive in other areas and worth checking.
It's not dangerous per se; it's expensive and that is all there is to it. There is no scientific evidence that low TSH without over range thyroid hormones causes heart problems or osteoporosis. So as long as your free T3 is in range, no additional risk. In fact low t3 causes heart problems. If the endo doesn't prescribe - and they are encourage not to because of cost - you can get a private prescription and buy from Germany where the price is reasonable.
Katherine, thanks for your post and the chain of comments that followed.I wonder if its possible to order Thyrovanz from the U.S.? I didn't check, assuming that it might be considered illegal. It's a great product, but you have to be willing to drop your prescription, and possible do your own testing. Best of luck.
helvellaAdministratorThyroid UK
Concordia has renamed itself Advanz. Teva prices are the same.
i have had a phone call from gp and she has put the dose up of t3 to what is was thank god but she said if i do not see the endocrinologist she has referred me to my prescription will be stopped immediately. she also said the endo will not prescribe it anyway. what do i do in this situation please. who do i contact to keep getting t3?
A series of comments as been deleted.
in reply to LouiseRoberts
Happy to hear that. Was just looking for how to report.
LouiseRoberts in reply to
For future reference, you click on the down arrow next to 'More' 
Thank you.
Sorry, my thanks appeared further down.
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