Hi. I'm so glad I have found this forum! I was searching for the possibility of having FT3 done privately as the NHS will not do it. I have never found a place more unhelpful . I hopes you guys may know of a home test that is reliable? I was put on 175 mcg on levothyroxine after I was diagnosed about 6 years ago. I have been taken a lot of supplements and have had to reduce down my dose to 150mcg as a result. I felt awful on the higher dose and my T4 and TSH confirmed my levels had hanged. I still feel pretty bad. I hurt in all my joints especially feet and ankles. I am exhausted and the weight is slowly creeping on and nothing I do seems to make a difference. I have asked my GP to check if I have a conversion problem but they say it is all in my head and all I need to do is eat less and exercise more. What makes it really funny is that I am a dog walker and can will do a lot of exerciser every day. I have counted up to 30 000 steps a day plus stable work on top. Still didn't loose any weight. I would like to be able to maybe run a couple of private tests and if they show anything, take them back to my GP and make them treat me. I'm not really sure where to go from here. I am currently looking into changing my diet to be more "thyroid friendly" but need to research a lot more before I can go ahead.
It is very upsetting when you get told it is all in your head and you are fat because you are lazy, eat less and exercise and I know someone who has hypo too. They are very slim and fit with loads of energy. You are just lazy.
Anyway, rant over. Any pointers on Bt's would be great.
Thanks Pixelpup
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Thank you. I will take a look. I have hasdmy iron tested and they where at rock bottom so am now taking supplements regularly. I have also recently had a general Bt as I am so tired but it all came back "normal". I should probably ask for the results so i know what was tested and what they consider normal.
If you want information on accuracy you will have to contact the companies involved and ask them, or arrange for tests to be done by multiple companies on the same blood draw - and who has the money to do that kind of test duplication?
I'm always surprised when people ask if private blood tests are accurate.
If I said No they are not accurate it would mean that lots of us, including myself, are knowingly spending large sums of money on tests we know to be inaccurate. And why would we do that?
If I said Yes they are accurate, I have no official information on which to base that judgement.
I think the only truthful answer I can give is that lots of us spend money on private testing and just hope like hell they are accurate. What other choice do we have?
Hi I had my t3 tested on the NHS seven weeks ago so it can be possible I'm not sure who else on here has but I have to say I have been on meds over twenty years and they have now only done it. Turns out i am converting in the range they have but test says normal even though I asked advice from this site and was told I could do with a bit of t3. now is my new struggle getting them to prescribe t3 I'm not holding my breath though. I look forward to hearing what your results are if you do get privately tested. Take care
Im the same ,been on Levo 20 years and never had t3 tested until 6 weeks ago ,came back rock bottom ,No wonder i felt soooo awful ,but Endo just ignored it ,Didnt even call me back to talk about anything ,he just said via letter "Nothing to do with hormones " and was discharging me back to GP ,what a waste of time and that was ,going to self-medicate just cant go on feeling like this ,worked 45 years of my life and due to retire January ,dont want to be feeling like this any longer !! want to enjoy my retirement not just exist !!,can any of you wonderful helpful people help me with med changes ,
At the moment on 100 mcg Levo and have ordered liothyronine 25mcg ;s ,my question is how much Levo do i reduce and how much Liothyronine do i start with ?? ,please can someone help with this ,many thanks in advance xx
yes my T4 optimal and T3 3.3 [3.1-6.8] the lovely people on here ,have helped so much , and yes your right we are just a number ,my so called ENDO ! didn't listen to me at all ! At my consultation i gave him a list of 15 symptoms and he said "you do realise your blood test will probably come back Normal " so why do i have all these symptoms" i said, " No answer !! 2 weeks later letter arrived saying discharge back to GP GRRRRR!! Hope you get the help your looking for , keep fighting and dont give
sunny-64 If you start your own thread to ask about adding T3 members will comment, it won't be noticed tucked away in someone else's thread
What you do need for anyone to make a suggestion is recent test results for FT4 and FT3 done at the same blood draw to see where they both lie and what your conversion is like. You can't take a wild guess where T3 is involved, it's rather potent so should be started low and increased gradually.
sunny-64 Well, it certainly looks like you could do with the addition of T3. When you have your new results (I doubt they'll be much different to be honest), and make a new thread, include any recent vitamin and mineral results you have to give the complete picture.
I have had T3 tested on the NHS but not RT3. I have heard of people who had RT3 tested on the NHS though, so it is possible. If your doctor is not helpful, you always have the option to go to another GP or change practices. It's certainly a lot of b*****ks from them to tell you that it's all in your head and you need to eat less and exercise more! You don't have to put up with nonsense like that! You deserve a doctor that takes you seriously and wants to help you! X
Most NHS clinicians are woefully ignorant and or blinkered about this. To get NHS blood tests of the important hormone levels and other cofactors your GP has to make an evidenced case and even then the lab can refuse until the GP wins an appeal. This takes huge time and effort by the GP and if they're not convinced themselves or just plain lazy you're stuck.
It is absolutely necessary to investigate t3 and t4 levels in conjunction with TSH, and possibly other indicators if your responses to medication are problematic. Unless you have a brilliant and open minded GP your only route is to start collecting the evidence yourself.
There are several online and or postal private blood testing companies and after trying some I now use mymedichecks (google them) regularly for various levels of testing. The basic monitoring for me is free t3 free t4 and TSH by finger prick blood collection at home and lab result within days after posting the sample recorded next day delivery to the lab. A big range of tests is available and the website they give you for monitoring your results is excellent.
I also had a simple DNA test to check my DI02 status which could affect thyroid hormone conversion and account for a disjoint in in TSH and T3 T4 levels, although the medics don't like to believe it is even possible there is research that suggests it is My blood tests over a year, looking at all key indicators and linking changes to changes in medication is starting to prove aspects of my condition that the NHS otherwise refutes or ignores. I am now threatening my local clinical commissions group with the health service ombudsman if they don't start taking proper fair care of me. Free treatment should be for all thyroid patients not just the cheap sheep that fit their crude pharmaceutical and symptom model.
Lastly a word on Levothyroxine, this drug has a chequered past and my body reacts to it as if it were toxic. Those who can tolerate it and find relief of symptoms are lucky, great, good for them. Some of us are not so lucky. I would rather not rely on desiccated thyroid obtained at significant expense and trouble from the USA but it's the only thing that restores my sense of healthy self and my blood parameters to anything like normal.
The Parliamentary and Health Service Ombudsman is there to defend mistakes made by the NHS, they are not interested in patients complaints. They will do everything they possibly can to wear you down such as claiming you haven't replied to their e-mails resulting in them deleting everything thus having to start the whole process again.
Actually I have had successfully resolved NHS failings in my treatment through the ombudsman before. Also the threat of recourse to the ombudsman gees up the local bodies.
Maybe. But the ombudsman ordered my health authority to pay me back over £1000 in private medical fees for treatment I should have been provided on the NHS.
i am having my tsh, t4 & t3 tested today on nhs in time for an appt with private endo as i cant get a decent endo in my area. I also had it tested in January this year ad twice last year...they didnt want to but i am a beligerant so and so! i have shouted at practice mngrs. Todays test is being done with a request form from useless endo from last year, so they absolutely CAN do it but they do not want to. My gp has requested it before and the LAB refused!!! so they had to retest the sample....its madness.
What i have learned is dont expect too much as it sets you up for disapointment.
I gained 6 stone in 2 years after diagnosis and nothing i did would shift it, i am reasonably active and eat well.... fast forward a few years and getting nearer optimal dose, i have lost 2 stone this year NOT FROM DIET NOT DOING ANYTHING DIFFERENT AT ALL, so get well first weight will follow later
HI I am afraid I am going to be a bit negative but I wanted to bring you into the world our a great NHS. Most Drs will not accept tests unless they are done by the The Drs lab TDL in Harley Street or at least one of their clinics and you need a drs reference to get the test done.
Yes there are lots of test available but your GP or endo will not accept it. I got some tests done in South africa and they were accepted as they were from an Endo there. You may be lucky but dont get all excited. The best way is to see a private Dr and have the test done but be warned the fees make your eyes water.
I think we know why many NHS Drs say they don't accept the tests - it's simply a get-out. It's a bit like saying they only accept the results if they are printed on pink paper. Or purple when there is an 'r' in the month. And as so many people on here can testify, even when tests HAVE been done by approved labs, there is no guarantee whatsoever that your GP or endo will respond in the way you hope they will. Or one will though the other won't. And then there's a change of GP or endo and thus the game begins all over again....
Hmm, I really don’t know, I do know that the Drs. that treat us are being taught a flawed science. For instance, if you have a heart problem you see a Dr. and get the medicine and that is sort of it. If you see another Dr. 100 Miles away you will get the same diagnosis and the same treatment and if you go private the only difference is you get the treatment faster. There are exceptions to this of course.
This is a finger in the air job. If you are on the NHS you get T4 that is about it, and if you are lucky.
If you go private you get your adrenals check out, your bloods check for a whole array of thyroid profiles are taken, ie FT3 FT4 T3 TSH etc etc.
It’s a joke.
I have my friend’s wife who has put on 4 Stone, very tearful, depressed, sleeping a lot and very feeling cold, all the good thyroid symptoms. She has had a blood test and it came back with an alarm from the Hospital to say she was very hypo thyroid. But do you think the Dr will give her thyroxin, nope. She being told its about that time of her life, go on a diet, sleep more, don’t get stressed, have counseling for depression and may be some drugs to help her and in six months we will do the test again.
Its is a joke and I feel nothing will get done unless the Royal Collage who trains these drs are taken to court and sued.
That’s why Lynn set up this support group to raise awareness of how we are treated by the NHS or in our case not treated.
stockman27 Your friend's wife needs to change GP immediately and see a GP that takes her seriously! She also needs to complain about this GP that talks so much b*****ks!!
In my experience this isn't necessarily true. I did mine via BH, then went to my doctor with my concerns (around 6 weeks after the test, she'd been on hols). She said she wanted to do another blood test as the one I showed her was now 6 weeks old so my TSH might have changed. I said fine, but I am needle phobic so I cannot do a test via the normal arm blood draw. She rolled her eyes at it but she didn't object to me having another blood test privately via BH again. She just made me promise to get it done after 6 weeks on Levo and to mail her the results.
So yes, my GP WILL accept BH blood tests. (I'd also had some done re vits/minerals and she was interested to see those and took them seriously) - they were done by Medichecks, and City Assays.
Edited to add: If these companies weren't reliable then I am certain my GP would have told me so at that point.
Thats Great you have an undertanding GP and they are around. I am speaking in my experiences and what other have told me. Good luck and I hope you have the treatment you want and more over feeling better.
Thanks John. I'm sure you're right and there are many GPs who won't accept non-NHS tests (although really they should be glad we're saving the NHS money!).
I work in a lab that does a lot of finger prick testing for thyroid hormones and I can assure you that the tests are just as accurate and reliable as those performed by the NHS. We use the same analysers and as long as the lab is accredited with CPA/UKAS the quality of the work will be just as good (Probably better if you ask me). All the papers that I have read show that capillary samples are not significantly different to venous ones, except when measuring drug levels, and our internal testing proves that thyroid hormones are very stable in the post. As long as your samples are run on the same type of analyser and the sample is well taken your results will be very accurate. If we run the same sample many times the results will be within 2% of each other.
I agree with you on this, do not get me wrong. But through experience and exasperation the sticking block I have come up against are:.
What Dr asked for these tests, Is the assay of the tested recognized by the GP or Endo. Or they say the NHS doesn’t reconise this test or they will not do it. Or the GP is a lot of cases don’t understand the tests.
I have had instances where my T3 has been very low but my GP has insisted that I am ok , now listen to this reply I had once. The NHS does not test T3 levels so they cannot be important and your TSH is fine so you must be ok.
Unfortunately I believe you. The perceived wisdom is that the TSH is the best indicator of thyroid function and in my experience that is generally true but not always.
You absolutely need to get free T3 and T4, as well as reverse T3 tested. You could be converting T4 to RT3, and not making T3.
Additionally, you may want to see if your adrenals are also a problem. You could do a saliva adrenal stress profile and DHEA also.
There are papers written by doctors about how the TSH is a useless test. My TSH was always around 1.0, while my rT3 was over 450 and going on T3 was a lifesaver. Now, after recovering from cancer, I've been finding that though my thyroid labs looked normal enough on T3, it's been masking a serious adrenal problem when we looked into my symptoms. There's a lot to all of this, and without the right testing, there's no way you'll get well.
Thanks. After reading all these comments I really need to get them done. Need to find the money from somewhere as it's a bit short at the mo I had a look at adrenal symptoms a few weeks ago and I seem to tick most of the boxes for the common symptoms. I didn't know there was a test so will look at that too. It is so nice to actually find out that I am not insane and there are actual real live people out there that thinks and believe that there is more to a thyroid problem than T4 and TSH!
I spoke to someone today, she is Iranian. She has had Thyroid problems but it seems to have settled down on it's own. The first thing she said to me was.....and of course they check your T4, TSH and T3. She was very surprised that they are so bad in the NHS and that they don't understand the importance of T3!
Just to remind people, if you use Blue Horizon then Thyroid UK gets a small donation each time. Tried, tested, highly recommended and lots of tests to choose from with this one being good value for a complete picture of thyroid, vitamin and mineral status bluehorizonmedicals.co.uk/T...
I also had private bloods done via the companies listed above, and my GP fully accepted all the results. Also altered my meds to suit the test results. Maybe some GPs are ok with them, and some are not sadly
Umm not read all your replies but here's my opinion. The NHS do do FT3 testing I have it done every time, if it's not done I get the doctor to do another test until it includes both FT4 and FT3 otherwise how the hell do you or I know if everything's converting properly, or if it's high enough in the range. Example a normal FT4 High TSH and Low FT3 can indicate a conversion or shutdown problem.
By shutdown what I mean is the body is bein down regulated naturally because you have an adrenal issue, an indicator of this would be an ever increasing of Levothyroxine, etc and still not resolving/eliminating symptoms. It's the bodies response or should I say the adrenals response to help recovery.
If you've not had them added nutrients you need added to the blood test is iron/ferretin, B12, Zinc, Vit D3, Folate/B9, all of these are frequently low, even if their in range, Zinc is commonly low in hypothyroidism and high in hyperthyroidism, coincidences?
If multiple hormones are low beyond thyroid hormones, these could include low progesterone, DHEA, etc are indicative of a either a pituitary or hypothalamus condition, or adrenals, effecting the HPA axis, ( HPA =hypothalamus pituitary adrenal)
I've included all these and some may not be relevant to you, but the main point is to show the doctor "That's why we have TESTS DONE" and hypothyroidism isn't as simple as giving a little white pill as ignorant doctors are led to believe, and in 75-80% of the time adrenal problems are either the main cause primary or secondary but involved.
Hope this helps you, and not confuses you, bottom line is copy this to take to your doctor and get them added to your blood tests and do his damn job! That includes the lab they use also, as in a lot of cases the lab uses TSH so don't do the rest unless the doctor pushes it...
Didn't have the cuppa- would have needed it though lol! Very good info. I really need to check this out too. Too many things I can relate to in this article!
I started on T4/T3 combination last year March, and I had to remind my endo consultant once or twice to have it included on the blood tests request form.
I got told all those for the past 15 years before a kind GP referred me to the hospital. Demoralising and depressing, but once they realise that you know more than they do, they seem to take you a bit more seriously. Of course, not all endo consultants (who mainly practices for diabetes care) have been agreeable (according to experience).
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. I hopes you guys may know of a home test that is reliable? I was put on 175 mcg on levothyroxine after I was diagnosed about 6 years ago. I have been taken a lot of supplements and have had to reduce down my dose to 150mcg as a result. I felt awful on the higher dose and my T4 and TSH confirmed my levels had hanged. I still feel pretty bad. I hurt in all my joints especially feet and ankles. I am exhausted and the weight is slowly creeping on and nothing I do seems to make a difference. I have asked my GP to check if I have a conversion problem but they say it is all in my head and all I need to do is eat less and exercise more. What makes it really funny is that I am a dog walker and can will do a lot of exerciser every day. I have counted up to 30 000 steps a day plus stable work on top. Still didn't loose any weight. I would like to be able to maybe run a couple of private tests and if they show anything, take them back to my GP and make them treat me. I'm not really sure where to go from here. I am currently looking into changing my diet to be more "thyroid friendly" but need to research a lot more before I can go ahead. 
Any pointers on Bt's would be great.
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