NHS Thyroid Testing

[QUE6T-33]

My NHS have always been problematic with carrying out FT3 Test. But, as mentioned before, now FT4 getting thumbs down.

Are we all banned to Private testing or are some of you still getting NHS FT4 + FT3 ?

On Thyroid meds & problem conversion...

[beaton]

Well QUE6T-33, I still get FT4+FT3 tests but whether this is because those involved with my care are baffled or perhaps,since the hospital first asked for and got T3 tested I have always requested it on the form ???Mind you my I endo. and I didn't agree on my progress with the last results,perhaps it would have been better if he had not known my T3 result. xx

[lola1956]

I had mine done by a consultant at hospital around 6 weeks ago but he had to push for it as he said the labs often decline in

[eeng]

My surgery's lab only tests for T4 if the TSH is out of the 'normal' range.

[Jenny23]

I was told by my GP that she was told by "The lab" that testing for T4 was unnecessary (even though my TSH was 26 on 150mcg Levo) and would be irrelevant anyway, as I was taking Levo. Seriously???? Was suggested to me on here that I have bloods done privately. Makes you wonder if this is a silent drive to cost-cut...

[Heloise in reply to Jenny23]

Jenny, perhaps because the TSH was proof enough for treatment and most likely your T4 would only reprove that, they may wait until your TSH is closer to optimal and then look at T4 scores. Just a thought.

[stockman27]

Hi, I having had this problem since 1999, i have come to the sad opinion that all the NHS test is your TSH, it that is ok or in my case non existent the advice is drop your levels. The NHS does not bee live in adrenal dress or t3.

its private drs I am afraid.

john

[spm1]

I get T4 OK but the labs wont do the T3 if my TSH are normal. So I get the doctors to write a note to the labs and that has worked once but even the doctors don't know if the labs will do as they ask - they don't seem to have to comply with the docs instructions.

[Anuba]

I got free t4 done but had to make a point of asking for t3 but they did it but I fink doc had to specify lab to do t3 as not on sheet...

[Goldie2014]

Hi que6t-33

I can't believe that people like myself and many other people, are having difficulty not getting tested for our t3, I went to my surgery and was seen by a doctor who did not have a clue about testing for t3 levels,or maybe she just did not think it was important enough as long as the t4 is normal they think everything is fine , not the case I feel terrible!!!!!

[puncturedbicycle]

I'm reading this and getting more and more cross. I have a test coming up tomorrow, and I'll be damned if I'm going to let them stick me and not test t3. I'm on t3+t4 and I've been worried about this since I booked the test (forgot to explicitly ask doc for t3 test, which I shouldn't really have to do but you work with what you have).

Rang last night and receptionist said 'I'm not medically trained, yadda yadda yadda, ring back in the morning'; rang this morning and got 'They'll test you for whatever gp asked them to test you for' and finally got them to agree to ask gp. They 'will ring back if there's a problem' but I'm going to ring them again at end of day to find out if the note is on the test.

I'm regretting that I didn't just go and get a private test three weeks ago instead of booking appt w gp, then booking with phlebotomist, etc.

Phlebotomist is excellent and I know if it isn't in order tomorrow morning she will pull out all the stops to get it sorted, but then she has to run around finding a gp and that messes up her day, which doesn't seem fair.

[puncturedbicycle in reply to puncturedbicycle]

Had to make three phone calls to the surgery to confirm that t3 is on tomorrow's test. But at least they've asked for it. Let's see if they actually get the results from the lab.

[lucindajethol]

Do you only ask for FT3 to be tested if you are still feeling unwell on what is your correct estimated dose of Levo.

[puncturedbicycle in reply to lucindajethol]

Yes, as well as if you're taking any form of t3 (ndt or liothyronine).

[Hidden]

Hi

I take levothyroxine and have become very well on this over the past two years. I even feel like my old (well) self again!

I have TSH and T4 tested every 6 months and these do relate to each other (and my well-being) as GPs might expect if everything is going to plan. I've not had T3 tested but have never asked as issues seem to have resolved themselves once I'd found the correct replacement dose for me and my body became used to having levothyroxine.

I do think it's a shame at best, and negligent at worst, when more thorough testing and interpretation is not done, especially when levothyroxine monotherapy so clearly does not suit everyone.

Best wishes

Liza

[Heloise in reply to Hidden]

I don't know if you have seen the videos I've posted from Dr. Clark in functional medicine. I think if I read them correctly, your problem has only been in the production of T4 due to the simple problem with your thyroid gland itself. Maybe you had low iodine or a small immune attack and merely replaceing T4 works well for you. Some of the other reasons for low thyroid that he points out may be due to issues other than yours that make simply replacing T4 ineffective. That's why certain people need much further investigation and it's too bad the NHS guidelines don't consider it.

[Hidden in reply to Heloise]

Yes this is the conclusion I came to. I think I must have a straightforward need to replace or top up T4. Small doses of T4 make a big difference to me so I know my body responds well to T4 monotherapy. I had a bad dose of flu, the winter of the swine flu, and it never really seemed to clear up and 14 months later I was diagnosed with hypo. I wondered if this triggered it. My anti-bodies are also very low, so my hypo is less likely to be autoimmune. I think, from what I read here, that autoimmune hypo can bring with it many more issues. If I'm able to work this out, I wonder why it's so difficult for the experts in the NHS to understand and I agree that much more should be done to support the more complex problems which can come with thyroid issues. I haven't had a look at the videos you posted - I will find them - thanks!

[Heloise in reply to Hidden]

That makes perfect sense, Liza. In the states, they think that children who become diabetic have had their pancreas affected by some sort of viral attack and it would seem very plausible that this could happen with a thyroid gland. Of course, I'm not a medical researcher but would be interested if that has ever been figured.

This is the first of 22 videos giving you the idea of the complications of low thyroid. It's only 5 minutes and I think it also makes a lot of sense.

youtube.com/watch?v=nZ_CP7l...(Not working as expected?)

[lucindajethol in reply to Heloise]

Listened to this guy before and he certainly makes a lot of sense

[Heloise in reply to lucindajethol]

Yes, It is a shame it's so difficult to get the needed tests for the many other issues that could be involved, as his videos bring out.

[bantam12]

We routinely get TSH, T4 and T3 tested at our NHS practice.

[puncturedbicycle in reply to bantam12]

I wonder what the difference is between your surgery and the ones which refuse, or if it's down to the lab.

Mine used to do it, and they should do it now that I'm on t3 meds but increasingly it's a struggle to get it done.

[Stourie in reply to bantam12]

I'm the same and feel very lucky compared to most people on here.

Jo xx

[bantam12]

No idea why puncturedbicycle, we live in Somerset so maybe it depends on the area.

[puncturedbicycle in reply to bantam12]

Yes, it has always varied according to area, but it seems that it is going in the direction of no t3 testing and sometimes even no t4 and I see this reported here more than comprehensive testing. Are you on t3 yourself (if you don't mind me asking)?

[bantam12]

I only take T4, my husband takes T4 and T3.

[Alvena-Lesley]

I think I must have been very lucky. I went to see the specialist at the Royal Berkshire Hospital and after a thorough question and answer session I had blood tests which revealed that my FT4 was not converting to FT3. I am now on FT4 and FT3 and feel so much better. Be sure when you get to seeing a specialist that you have all the facts about how you feel. Sometimes things that do not seem related can actually be critical for a full diagnosis. But once again, I reiterate, I think I was very lucky.

[QUE6T-33 in reply to Alvena-Lesley]

Hi Alvina-Lesley, What specific tests did your Consultant run to identify problem conversion FT4 to FT3? I have this issue which only identified by RT3 Test.

Penny

[Alvena-Lesley in reply to QUE6T-33]

The results don't mean much to me but this is what the print out said before I started taking T3.: Free T3 3.8; TSH 0.21; Free T4 17.2. I now take 10 mg T3 and 50 mg T4 each morning at 6-00 am. I guess everyone of us is different and may be, for optimum health, I could have my doses tweaked but since taking T3 I feel so much better. I no longer have an afternoon nap of two hours and my concentration is definitely improved. Unfortunately, I haven't lost any weight.

[Helen7420]

I had my first test done privately but now have them done on the NHS with the same consultant.

[QUE6T-33]

My TSH has always been within range, but FT3 very low - NHS still refuse to Test.

[QUE6T-33]

Has Thyroid UK approached Government for guidlines of

NHS FT4/FT3 Testing?

They usually take up our cause.

[Alvena-Lesley]

In September 2013 I saw Dr Ghosh at Royal Berkshire Hospital he took full medical history and did blood tests. Dr Ghosh told me to take T4 100mg early in the morning with water and not to eat for at least half an hour. I was to do this for 2 months. I then saw the senior consultant, Dr H Simpson in November 2013 after having had a further full blood count including Free T3 which was 3.8, TSH 0.21 and Free T4 17.2. May be this makes some sense to you but the outcome was that I am now on T3 10 mg and T4 50 mg. This would seem low to me as I had a full thyroidectomy in 1989. However, I have been more active since I have had the T3. Maybe for optimum health I could have an increase as I am still unable to loose weight. However, at least I don't fall asleep in the middle of the day anymore. The most important thing he stressed was that I should take my medication in the morning with water and not have anything to eat or drink for at least half an hour after taking.

[QUE6T-33 in reply to Alvena-Lesley]

Hi Alvena-Lesley,

Oh thanks for that - interesting. Could I trouble you for ref. ranges for your

TSH, FT4,FT3 please.

Many thanks

Penny