A Tale of Two Tests

[HypoTrish]

19th December 2017 - Oh Happy Days - getting bloods taken today GP has requested T3 and I have a private test kit from Blue Horizon just to check I have waited all year to get to this stage Tra la la off I go.

Blue Horizon test done will take it to the Post Office on the way back from surgery.

At the surgery - bloods drawn - check with nurse that T3 is requested both from GP and passed on to Lab - yep all in order thank goodness - sigh of relief.

20th December 2017

Check tracking on private test - kit received 8.25 am in London - two day turn around - should hear by Friday 22nd and results from NHS should be available by then - all going well so far. 11.17 am goodness me results are in from private test I can post them later on the Thyroid UK forum and get some advice - phew 5 star service from them.

22nd December 2017

9.30 am Right I have to go out to the supermarket today will just phone the surgery first before embarking on that mission.

After 3 attempts and auto serv phone going through to unmanned phone extension.

me: Good Morning (hooray I have a receptionist I know well) I'd like my results from blood test on 19th please.

them: OK what's your date of birth

me: 25/12/19..

them: gleefully Oh nearly your birthday now lets see - do you want the figures or GP's comments

me: Erm both would be handy I then get TSH,T4 and urates sodium etc. OK that all sounds good have you got T3

them: T3? lets have a look no we don't have anything like that was it requested?

me: Yeeess have the Lab not done it?

them: well I don't really know I can't see anything on the system to say it was requested. I will send an e-mail to the nurse that took it, she is in today so will be able to give us some information. I'll get back to you as soon as I hear something.

me: OK thanks bye.

4 pm back from shopping and stressed no messages will phone the surgery

me: Hi I called this morning re blood test results spoke to ........ is she free.

them: No I'm afraid not but I can help you.

me: OK thanks I'm looking for results of blood test I need the T3

them: after about five minutes - no we have not got anything are you sure it was requested - do you normally have T3 done we don't usually do that one.

me: a little sharply - It was requested by both GP and nurse

them: Oh hang on there is a note saying we have asked the nurse to confirm but she had to go home early due to personal reasons.

me: Right well that's unfortunate but as I was in her office when she took the blood sample I saw her request T3 do you think the Lab has not done it?

them: we couldnt say but it probably means that result may take longer or it was not requested. But don't worry if we find anything out by 6 pm we will phone you if not we will get back to you on Wednesday 27th.

me: OK FINE I didnt get the GP's comments earlier what were they

them: Normal no further action required.

me: after disconnecting call - NORMAL NORMAL - maybe for you but not me. I am going for a glass of Christmas cheer. Little voice in head Now you know that is not good for you. Me well you can get lost .........................

[Hidden]

Unfortunately, re FT3 testing, all too often now, the Lab trumps any GP/nurse request to do it, if TSH is within range. How we got to a point where, in the NHS, a lab technician, however brilliantly qualified in their science, over-rules a Dr in charge of treating his/patients, must probably remain one of modern life's medical mysteries - that, and why the NHS didn't tell Concordia where to put its 6000-fold increase in the price of Liothyronine the moment it happened, of course! I recently had my Lio withdrawn so you'd think checking what has happened to my T3 level as a consequence, would be of no little interest, but no, only TSH and T4 came back. I feel your utter frustration HypoTrish.

[Msbnurse in reply to Hidden]

You have a right to demand a FT3 & any other labs u want..just say you'll pay OOP if it's not covered!

[HypoTrish in reply to Msbnurse]

Thanks Msbnurse sorry I am not understanding your reply the Lab seems not to have tested T3 even though GP requested it

[SeasideSusie Remembering in reply to Msbnurse]

I'm guessing you're not in the UK Msbnurse No idea what OOP is.

The UK's National Health Service doesn't allow us to demand any tests. We can ask the GP for them but that doesn't mean we will get them. And we can't offer to pay for them. We don't have the same sort of health system as those countries where you have some kind of paid for cover so we don't have the privilege of demanding anything.

We can use a few private labs for some tests we can't get done on the NHS, and many of us do use them, but our NHS GPs generally won't accept them.

[Msbnurse in reply to SeasideSusie]

Sorry..oops means "out of pocket"!

I'm from US..as long as you ask could we please chk this or that lab..our Drs will if they put the correct questionble DX down. If it's not covered or they refuse.. yes,you can order your own from local or internet labs.. but you'll pay out of pocket..which I'd be willing to do if the doc is not listening... And in that case.. I'd be finding new doc!! You've got to let them know you're going to be a partner and also your own Advocate in your health.

[Fruitandnutcase]

Years ago I had a similar conversation about T3 with our surgery phlebotomist. I made a half hearted comment about the lab never testing T3 even though my endo has requested it. That wasn’t possible said she, I pointed out that yes it was and the labs pretty much did what they liked. Oh no, she went on and on and on about how they had to test what thedoctor or endo had requested then she turned round and said ‘You seem a bit stressed today’.

I wasn’t stressed at all, it was just dealing with her! Thank goodness there are two phlebotomists. I’ve used the other one ever since.

Now you see why I get my tests done by Blue Horizon! They make life so easy.

[HypoTrish in reply to Fruitandnutcase]

Hi Fruitandnutcase

Thanks for reply I would be happy to rely on Blue Horizon but I had to take the money for this test out of my savings - I will struggle to afford any more. I am now concerned GP will not accept BH results. Goodness knows when I will get to talk to her.

[Fruitandnutcase in reply to HypoTrish]

It’s terrible that we have to pay for our own tests isn’t it. I started because the next step in my treatment should my Graves return was to be RAI.

I couldn’t believe that they would do that without even knowing what my T3 was like. I had used City Assays before when I was told by an endo that ‘testing vitamin D was fashionable and if I could give the endo evidence that it was worth it he would do it’.

Take along details of the lab so that your GP can see that they are accredited etc.

You will probably find that the lab ranges used by BH and your GP are different - they always have been for me - but the results of your tests should lie in a similar position within the range on both sets so don’t let that worry you.

[SlowDragon Administrator]

My new GP was quite put out when I said, no thanks to NHS testing. Was quite put out in fact.

I pointed out that they don't test the FT3 and as I am taking T3 it's pretty relevant.

As they are my private test results. I can say to them..... "results are .....(wait for it) .......normal"!

[Fruitandnutcase in reply to SlowDragon]

Brilliant! I love it - I’ll be smiling for the rest of the day thinking of that 😉

[Kell-E in reply to SlowDragon]

That's fabulous! No further action required. I love it!

[Saya85]

Oh thank goodness I’m not the only one!

My surgery won’t give out any test results over phone via receptionist.

I had to wait for a nurse to call me in afternoon just to agree to a printout !

(Bear in mind I have a clinic full of patients to see myself so can’t just answer the phone as soon as it rings- cue me having to warn every patient I’m testing that of phone rings il have to answer and will they excuse me. Thankfully the lady who I was testing was lovely about it)

Nurse asks what I want.. I explain and ask her to tell me about results - doctor hasn’t commented on them in over a week-

apparently b12 is just below range but test again in 3months. I said no- I don’t have3 months to Waste ...

Anyways she says she’ll print it out and I’ll pick it up tomorrow - happy days.

Next day I get to surgery and met with a non plussed arsey young receptionist- goes off to find results - and then tells me the nurse who called me was from the sister clinic on other side of town! Can I go get it? I said it’s just test results- you can print them here...

She: “sorry I’m not clinical member of staff I can’t...”

Me:”can u get a clinical member of staff to press print???...” (<of course I never said that because that would just cause more aggro)

Off I go across town amidst Christmas chaos traffic.... a 5 min journey that ended up 30mins ... ughhhhhh how do these people function?!

[Saya85 in reply to Saya85]

I’m

Now annoyed I didn’t order the blue horizon checks this week as Well- thinking would be difficult before xmas and whilst I was at work. I don’t know whether to start supplementing or wait till I take baseline blood tests.

[HypoTrish in reply to Saya85]

Hi Saya85

I can understand how annoyed you must be - all I can say is I couldnt fault BH treat yourself as soon as you can

[Hidden in reply to Saya85]

Saya85 It's behaviour like that which in some part explains why the NHS has imploded. Thankfully after a fruitless, despair-inducing 7.30 am Drs appointment yesterday, at least I was able to then stand in front of a receptionist afterwards and ask for a print out of my latest blood results, oh and can I have a second copy to send to my Cardio please - and she did it immediately. I couldn't have stood your arsey receptionist sending me across town ... She's probably related to the receptionist who, when I asked "is there anything you can do, sort of thinking outside the box, to resolve this for me?" threatened to report me for violence and aggression against a staff member ...... You couldn't make this stuff up.

[Saya85 in reply to Hidden]

Oh my goodness! Tbh I think that’s what I was afraid she would probably say to me too! You could tell she was itching for a reaction whilst giving me a non plussed face.

That does remind me of the previous receptionist who refused to print out my tsh/t4 result or ask a doctor to do so- quoting DPA and that I had to give written notification that I wanted a copy of my records and there could be a charge for it.

What an idiot(!) I argued with her for a while but she was so adamant and wouldn’t back down. I know the law- I work in healthcare too and that does not apply in this case!

Ugh it makes me so mad... I know procedures are in place for a reason - but if any of this lot showed initiative the whole system would work a whole lot better!

They claim they are non clinical staff but then firmly place themselves between you and getting any clinical help whatsoever!

[Hidden in reply to Saya85]

That's about the only thing that's good about living in France. When you have a blood test you receive the results in the post the next day and a copy goes to your Endo/ Doctor for their information

This all sound brilliant apart from the fact that they won't do FT3 or minerals so actually no good anyway.

I return to the UK every year now and use Blue Horizon. With the money I save not ever visiting my Doctor or Endo. I self medicate with the info learnt on here too.

[Msbnurse]

Your most accurate measure of tissue level of the ACTIVE Circulating hormones useable by tissues..is firstly a Free T3,Free T4, and the TSH (.. TSH is for the Drs peace of mind mostly).

If you don't know what's really getting converted to active thyroid..you won't get the correct dosage!!

Compounded Dessicated Thyroid caps worked best for me.

Much luck to you!

[Kell-E]

I laughed reading this because this is every medical office I have ever been in. Ughhh!

[SilverAvocado]

I've just heard from my Endo that they've started a new system of only testing freeT3 on a Friday... So as I her clinic day is Thursday I will have to go for my blood the week before even to be in with a chance of gettting freeT3. Changed recently without warning.