Around 10 years ago I had TSH (fairly low - around 1.5 I think) and T4 (12 - just above borderline), so wasn't followed up on, then around 6 years ago with New GP surgery it was written in my notes that I should have TSH, T4 AND T3. When the results came back there was TSH only (at 2.5). Finally a year later I managed to get an appt with an endocrinologist and they only did TSH (at 3) and T4 (at 11 - borderline again). When I asked the consultant why there was no T3, he told me that it was not required and to go away and live with it. The "IT" he referred to was fibromyalgia, a neuro condition which causes a lot of problems but has similar symptoms to low thyroid.
I am under the impression that when presented with symptoms of hypothyroidism, all 3 test should be done (regardless of what the differential diagnosis might be). Would that be correct??
Is there anything I can do to convince the GP that I can be retested now. Even though my symptoms are now a lot worse and clearly match up to hypothyroidism I feel they may not take it seriously and fob me off again. I have dowbted the fibro for a while as I have looked at my medical notes and seen references to psoriatic arthritis as well, which I don't recall (I had a few weird years in my 20s and 30s where I moved so much and lost a lot of my records, and got really mix up), so that is another thing I want to readdress.
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Glenys
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Some GPs & Endos think T3 is a waste of time & don't test it. Some will only request T3 if TSH &/or FT4 are out of range.
Shockingly, some labs will ignore GP requests to test FT3 and FT4 unless TSH is out of range, although they're unlikely to be so cavalier with endo requests.
This is true twice the doctor asked for T3 to be done and twice they refused saying not necessary only if on T3 medication (what a load of c......p), changed doctors and my new doctor tests every time now. The only one that I have not had done is Reverse T3 which I will be asking for next time.
I have Hashimoto's Thyroiditis and feel terrible. I'm on thyroxine and my TSH is just above 0. My doctors have tried twice to get my FT3 tested but the labs won't do it. I was referred to an endo at the hospital and he just checked my TSH too and said all was ok, aaaaaagh!!!!!!!!!!!!!!!!!!!!!!
Sadly free t3 is only tested when a specialist requests it. I have blood form from my GP and wrote on it myself that free t3 and free t4 bed to be tested for Dr **** of ** hospital and the date of my appointment. My endo is out of area so he wouldn't be able to access my notes so I give him my results.
You could write or phone the lab, I know someone who did this and was able to get ft3 tested.
Fibromyalgia diagnosis .... This is a symptom!
Do the rounds seeing all of the gp's at your surgery. Keep writing letters to your GP too as they are kept on your file.
I have had T3 requested on all but one of the blood test request forms from my specialist and the labs still didn't do it. My first test ever my TSH was well below the range and my T4 was way above the range - the lab commented on both of them, but still no T3. Looks like the labs rule!
Oh, Suze, I have seen them all! Your idea of phoning the lab is a good idea though. Next time I can get a test ordered, I will try this. Letters may be a good idea, although when I wrote to the surgery asking for access to my records, it only took a year before it actually happened! I can put myself over in writing better than face to face, as I clam up when I feel I am not getting anywhere.
I rang the labs at the hospital, and they told me that they never do T3 on the request of a GP, and then only for some of the Endos at the hospital itself!!! I asked who these endos might be, but she couldn't (or wouldn't) tell me. I am going to write a letter to the endo secretaries and ask them - as one NHS employee to another - if they can divulge who these privileged consultants are, and see if that works.
My previous GP got FT3 & FT4 results when she specifically requested them. Current GP has done the same. I'll find out if lab complied on Monday. If they haven't I will contact them and ask why they are overriding my GP's request and obstructing my treatment. Thanks for putting the notion in my noddle
From what I've gleaned from reading,if you have aTSH test and the lab regard the result as" in range" they won't do a T3 test as they don't think it necessary!
I am due to get an FT3 and FT4 test towards the end of this month,ordered by my Endo who had the form initialed to make sure I get it.I will go to that hospital's phlebotomy department for the test,where his clinic is ,rather than my normal local community hospital in order to make sure of it being done......it's the best I can do.
I would like to get a further TSH test as my Endo changed my dosage of Thyroxine so I don't know what my reading is at the moment .However I am so focused on wanting this FT3 test done that until it has been done I'm not asking for anything else.I sure don't want to jeopardise anything.....I've waited too long.Also,my Endo didn't ask me to get a TSH test done so I think he's definitely more interested in the FT3!
This is all just my own experience as far as it has gone,but I can sympathise with everyone for the struggle it is to get the tests they need in order to hopefully get properly treated.Is there an Endo near to where you live,who is recommended?
Mine was recommended by another member of this support group.
I had an endo recommedned to me, and as I work in the hospital and asked around, he said he would see me with a GP ref, but when I turned up for my endo appt, it was a different consultant. I have no idea how that happened, so lost out on that too!
That is awful Glenys.I will be shattered if that happens to me,having waited 3 months for this test ,but hopefully as the Endo ordered it he will want to follow it through.If I am recommended T3 getting it may be another battle.We shall see.............the whole situation for many is a scandal.
What do we have to do to get things changed?
This utter neglect of patients' well being is disgusting.What sort of treatment would GP's get for thyroid problems? They certainly wouldn't be able to carry out their work if they had the debilitating symptoms that many have to cope with.
I agree. I am going to try and see which endos at our hospital get the T3 test done, as one of the endos there is fighting against T3 treatment in a big way with thyroid UK it may be a problem.
I'm sorry you are suffering. Have you had a recent TSH test - if not, make sure blood is taken in the morning - as early as possible. I always have mine done around 8am. TSH lowers as the day goes by, so you could be higher in the morning and 'normal' by afternoon. If it is above 5 and you have symptoms, you should be offered treatment - scroll down to who should get treatment; bmj.com/content/337/bmj.a80...
If your symptoms are because of your thyroid I hope you get help soon. I was almost disabled by the time my TSH reached 10.
I think it is appaling that anyone should have to wait till the reached 10 before treatment, especially as it is around 2.5 in the US. I am sure it is to save the NHS money.
•Labs can choose to completely ignore GP requests and refuse to test for requested parameters (for example T3) if they "decide" this is not necessary
•GP's can choose to refuse to prescribe medication recommended by a specialist with more knowledge (for example an Endocrinologist) if they "decide" they don't agree
This happens all the time in this country. Really, it is quite normal that Labs only test for what they somehow deem appropriate. And for GPs to decide Specialists are wrong and ignore their recommendations.
It is shocking that somehow the "lower" entity has the last word (i.e. more power) than the "higher" entity. Surely Labs should be at the service of Doctors and do as they are told, and equally GPs should follow orders from Specialists? Whoever designed a system that allows this subversion of authority is lacking common sense.
What would it be like to live somewhere where a builder can choose whether to agree or disagree with what an engineer or an architect are asking him to do? A soldier could obey or disobey Captain's orders? A child had the last word regarding what homework he deems appropriate to do? And yet, this is how the NHS functions.
I am from Spain. When I go back and see Doctors over there and explain the way things work here, they do not believe me. Seriously, they think I'm making it up, exaggerating.... They cannot believe that a GP in this country can just override recommendations from a specialist, this would be unimaginable over there. My GP explained if he refused to prescribe a medication as instructed by a specialist, they would be reported and get into a lot of trouble. And a Lab that does not return the tests that have been requested by a Doctor (any doctor)?? Unheard of... labs in Spain simply do not have any authority to make any decisions regarding what should or shouldn't be tested for, they are a "tool" of the medical system, they can only ever do as instructed by a doctor.
I feel for you. Going private has been the answer for me, unfortunately. You can get anything you need tested privately... But you have to pay. A lot. Disgracefully unfair.
Have exactly the same response..EVERYTHING you red online says without getting T3 results, you cannot get an accurate view of things. But trying to get any UK GP to run T3 test is almost impossible. I have literally BEGGED them to test me for T3..they always refuse - usually with some non sensical excuse...My conclusion is that A) The test costs more money ..and.. B) If it is proven that your T3 is up the swanny, they will have to put you on a different medication that costs more than Levothyroxine ..Incidentally, I have found out that a 28 day pack of Levo costs the NHS ....93 Pence.!! That's why they just chuck this cheap 'cure-all' at us , and tell us to bugger off...I have had a terrible allergic reaction to Levo - covered in a nasty rash that has already left me covered in scars - and NOBODY will do anything about it ...they just took me back off the Levo - and have just re-tested me for TFT..(no T3 test ) ...so what a waste of time. I give up. I am now taking a load of supplements to try and 'prime; my cells to enable them to convert T4 to T3 more efficiently - only been few weeks , and no change yet ..Have seen 4 G.P's - all useless. Paid to see a private Endocrenologist ( £180 ) who will be over-seeing the latest tests and says that IF my levels have deteriorated, he will POSSIBLY recommend T3 treatment in the future. Wait to see. I hope you get some help soon. x
Hi SoozieQ. What were these supplements, please? I also suspect it is a cost cutting exercise. However I was put on Duloxetine recently at MY REQUEST (don't die of shock) and that costs £30 a month!!!!! For around 1 month it upped my energy, then it went down again (probably a side effect, knowing my luck). Surely a FT3 test and appropriate treatment would cost the NHS less. It just doesn't make any sense??!!
Many knowledgeable people suggest that higher doses of vitamin B6 most definitely can cause problems. If you are talking about the B-100 product (as you seem to be) well, H&B say this:
(That link might be broken by the time you see it.)
And yet, one of the B vitamins that might be required in megadoses, B12, there is only 100mcg. Further, it is in the less-favoured form of cyanocobalamin. You could be lulled into thinking you are supplementing with adequate B12 - and find you are not!
I take the Holland and Barrett standard B100 but split it into 2 doses over the day, by breaking it in two, as the time release tablet has a coating on it, and I think that included something like aspartame or sweetener at one time, and worked out more expensive
By splitting the tablet I also ensure the other vitamins aren't doubled up on the way they would be if I took x2 B500 tablets a day.
However, my problem was a year ago the GP did an pernicious anemia test on me and the B12 was in the thousands on the count. GP went ballistic, I came off the supplement and a couple of months later I started having problems concentrating etc - so back on them!
Yes, I also have a loyalty card - Thanks SoozieQ - I'll look into the others next time I pop in.
This is absolute truth, Rod. In the eighties in the USA, doctors were pushing this B vitamin for PMD or PMS (Premenstrual Syndrome) and the large doses they were recommending started causing neurological symptoms in many women. It was traced back to Pyridoxine. I was told to take it as well by a major University Hospital back in the day. Luckily, I stopped on my own knowing this vitamin was not going to help me since thyroid problems are rampant on both sides and I truly believed I had a thyroid problem. Which of course I did. I don't believe that there is such thing as PMD but a symptom of an underlying endocrine or hormonal problem. The neurological symptoms will take approximately 6 months to return to normal after the mega doses are stopped. Every thing we put in our bodies can cause issues and many people believe vitamins are innocuous and this is just not true.
Medical issues must be treated appropriately to resolve a health problem such as hypothyroidism. Nothing will replace either Cytomel or Levothyroxine if the thyroid is out of balance.
I am reading the care that is offered by your "NHS" not sure what the acronym stands for but I would imagine it is something along the lines of National Health Society. Just a guess. Years ago, our country only did a T-4 to check for thyroid. Then a T-3 and T-4 and then finally I got a TSH which I never did find out what the level was but they said it was off the wall? I think the doctors involved were just plain embarrassed that someone could function with that level. It is imperative when a thyroid condition is suspected that all three levels at the minimum be tested. Free T-3, Free T-4, TSH this is a primarily a woman's disease, mostly but not always. Women must take a strong role in changing the thinking of this crippling, potentially deadly disease. Yes, it is potentially deadly. Back at the turn of the 19th century the unfortunate people who had a thyroid conditions were usually institutionalized in insane asylums until the ultimate insult occurred which was death. For the women of child bearing years who go undiagnosed or under treated during pregnancy have the possibility of giving birth to an infant with cretinism or worse, miscarriage. Infertility issues are rampant among young women with thyroids issues. In the USA this was a disease of older women when I was young. Wrong! They just would not diagnose younger women. Women must start voicing their intelligence against health care systems that will not listen.I was so fortunate to find the endocrinologist I had when I was pregnant he took care of me like I was his spouse. Just an awesome doctor. I am shocked to think a primary care physician can over ride a specialist in the UK. Wow, in the USA the egos would be at war. Thank goodness for ego maniacs. This is just so sad. When we will stand up and be heard? This is not 1901.
The National Health Service is our tax-funded health system. It was started at the end of the second world war.
By far the majority of health care in the UK is provided by the NHS with the private sector, although significant in absolute volume, only a modest percentage. Much of the private sector is actually insurance-based, often through employers, but there is a small amount of pay-by-treatment, especially in the cosmetic sector.
We have seen posted here Dr Richard Asher's Myxoedema Madness paper and follow-ups.
I think your prices are out of date. The December 2013 Drug Tariff has £1.85 for both 50 and 100mcg levothyroxine and 25mcg tablets are £2.76 (all for 28 tablets). To be sure,that is still at the low end of medicine costs!
....have a feeling we may have communicated before on another forum - so I apologise if I repeat myself. Sorry you are having a problem with having your FT3 tested. I really think it may be due to additional costs. It was suggested on one occasion somewhere on this forum that when your surgery is doing the TFT's - you could ask to pay for the FT3 test which can be cheaper than having it done along with the other TFT's privately.
Also there is a doctor on this forum who has explained why the FT3 test is unpopular with some GP's and labs. Apparently it can be somewhat unreliable - have forgotten the percentage - and is therefore only a guide. I personally think it useful though. It helped me to add T3 to my T4 dose...I did a spread sheet of the Thyroid Tests and the results and could demonstrate to my GP that the T4 was not converting into the ACTIVE T3. In Crete we keep all our medical records.
Have you had your anti-bodies tested ? - Anti-TPO: Anti-Tg.... ? Maybe you have Hashimotos which can cause conversion problems. D102 Gene ? Hashimotos is the most common thyroid condition and is as I'm sure you know - auto-immune. So healing the gut has to be top of the list - and going gluten free is a good start....
I agree with Suze that Fibromyalgia is a symptom....and low T3 is so often the cause. My on going journey with the Thyroid/Gut over the last eight years has seen the end of the all over body/muscular pain that blighted my life. In fact I gave up my career in the early 90's as the pain was so unbearable. Went to India for Ayurvedic treatment too. Am now a T3 only girl and am currently in the UK visiting friends and family . In some cases I have not seen people for 10 years - the response has been amazing - on the positive side !
Maybe check out drmercola.com - and his interview with Dr John Lowe - his knowledge on Fibro and T3 was second to none. Check out the information on this forum by typing Fibromyalgia into the Search box above. One of our Administrators shaws is an excellent source - click onto members. I posted it on the Fibro Forum but it was deleted as apparently Dr Mercola is a no-go area for the powers that be and I was contacted by PM too ! No such thing has ever happened on this forum in the two years that I have been here. Please read for yourself and decide.....
If all else fails - then book your next holiday in Crete where you walk in off the street in our next village and have whatever you wanted tested ! The results are available within two days and beautifully typed up !!
Hi, sorry, was in a rush. All I have had done is TSH and FT4 - I have looked through my notes recently and don't recall seeing the ones you mentioned above at first glance. I have had a spot of Candida recently, which I haven't had for years and I think it has made me really tired, so am going through the process of eliminating it and treating leaky gut etc in the hope I will feel better soon. I have a hubby who loves his bread and yeast products, so there is always some in the house and he gets confused when I tell him I have to avoid sugar and yeast as much as possible. He tends to prepare the meals.
It would be so nice to be able to walk in to a clinic off the street and just get any test done as you require -IF ANYONE KNOWS WHERE THAT CAN BE DONE, LET ME KNOW!!
...sorry to hear about the Candida - hope it is better soon. It may be worth having your anti-bodies checked - Anti-TPO at least - as Hashimotos is the most common thyroid condition. I would also add the FT3 test so you can have some idea as to whether your T4 is converting into the active T3. Low T3 in the cells can be a cause of Fibro. There are details of private testing labs on Thyroid UK website.
It's a great shame that the UK is slow in catching up with walk-in clinics - although I have read that some Polish Docs have done just that in London.
Thanks for info = I will have a look on Thyroid UK site for the private labs..
From what I have gathred the lab where I am may be particularly unreceptive to FT3 largely because one of the cheif medical directors is a professor who has campaigned against it in the past.
If you read the articles below you will see the scale of the problem. I have only just found this on the web and it is disturbing to think he is in control over our Trust. But it answers a lot of questions about thyroid testing problems in general. I urge everyone to read about this and complain!!
Sorry to keep posting, but have just found out about this. It is probably on another thread, but it was through looking on a list of recommended consultants that I found him, then looked into him. It seems he had done a lot for Thyroid UK, and I agree it is a tragedy and he will be missed.
....am replying to your posts further down but the page has become too narrow to continue. Yes there was lots of comment about ~Weetman. He does have a website if you feel like dropping him a line ! There is certainly a great deal of arrogance out there.
Am presuming your next post was about Dr Skinner - who is greatly missed.
Many of us have consulted with Dr B D-P and he has written an excellent book - The Thyroid and How to keep it Healthy. There is a chapter on CFS/ME/Fibro. You may be able to borrow it from the Thyroid UK website. So much information on the site....including Hashimotos.
Glad you are finding some interesting articles. Have you picked up on shaws in the Directory and her links to Dr Lowe and Fibro ?
Around 6 minutes into the video both ladies putting forward the petition to the Scottish board mention fibromyalgia as being the diagnosis often thrown upon people with "normal" test results - as I think I have been.
I'm sure this video has been aired many times on here, so please excuse me if you have seen it before.
Prof W, mmm it came as a surprise as he originates from where I work, and I have done work for him, but feel that is why I have problems with the local health authority.
I saw the GP tonight, but for something else as an urgent matter, and I am due to see her on Friday, so I will ask her about it.
Mercola isn't for all tastes, he does a hard sell- but knows his stuff and has some good products.
That said ,he does crank on about some issues that can get to worry some folks with a plate full of issues already.. On balance better to get info than not and he is very anti establishment [medically] FDA, Pharma ,mercury,fluoride and jabs -so can't be all bad
Without a strong voice on alternatives the general public would be the poorer.
PS: I do wish we had a system more like Crete, from Marz's reports.
We seem to be going backwards in the UK right now...
I will go for private RT3 if needed even if it's not a 'cure all' measurement- it must figure in any meaningful management of thyroid.
Cost should not be a factor here- we're not talking £K's of doubtful cancer meds, that can't be realistically funded, but health care options to save mega costs later on and better peoples lives dramatically, in many cases.
...yes I agree with you about the hard sell. Seems to be common on the net ! I do however think certain things are worth mentioning - and the Dr Lowe interview is one. Especially in the absence of his website which is in probate. I think most of us are informed enough to sort out the nonsense - and I had Glenys down as one of them ! Thanks tegz.....
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I can put myself over in writing better than face to face, as I clam up when I feel I am not getting anywhere.
NHS Endocrinologist just told me I was hypERthyroid not HypO, and to stop T3 as it was damaging me. Am I wrong?!
My path to combination therapy
below range t4 t3 still...not thyroid it's because I'm slim ????? 
Hi all I haven't posted on here in a long time but I need some advice. I had to change doctors and they took me off T3!
Can't match a diagnosis to my symptoms.
