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[Mbrown001]

Not sure if this is relevant but there is a Pituitary Foundation. There is a website with a dedicated nurse who I think will answer questions. I think there is a tiny joining fee.

My sister had a pituitary tumour when she was in her mid 20s. She is now nearly 70. She has lived her life on various meds. Cortisone being the life saver along with thyroid meds.

I know she is a member of this foundation and finds it very helpful.

Mrs Brown.

[Peroxideblader]

So me paying for a private full thyroid blood test is pretty useless then as it just tests that day?? If stress affects the results are doomed as I'm permanently stressed with lack of sleep and feeling ill all the time. Bummer...I want them to find something wrong so I can then start to feel better but there again I don't want them to as it's serious is thyroid getting meds right. There again if it's perimenopause that is alot of trial and error with hrt...I'm coming back as a man being a woman is rubbish 😏

[babyjane]

My endo explained that the thyroid naturally adjusts its output according to the body's demands and activity, that is why it fluctuates.  However mine no longer produces any of its own natural thyroxine, the only T I get is the synthetic that I take, which I adjust myself if my activity levels increase for any reason, such as my daughter's wedding!.  As a result, now I am stable, my 6 monthly blood tests are pretty much the same every time.  I have TSH, FT4 and FT3 done pre dose, (thyroxine and liothyronine) and 2 hours post dose to see the correlation between and uptake of the meds. 

[countrybumpkin]

As babyjane says the body adjusts all the time.  If you have serious thyroid issues then every test will be abnormal.  The difficulty is with people who are borderline abnormal and as previously explained what is normal for one person may be abnormal for another which is why Drs should not go on blood test results alone but take into account symptoms.
People on thyroxine should be tested every 6 months and not as some surgeries do every year or even two years    6 months is the max there should be between repeat tests and any dosage change then the retest should be in 8-12 weeks.  Like babyjane says once stablisied on thyroxine then often there is very little variation in blood test results often for many years. Hormonal upheaval or extreme stress and illness will throw the results and dosages often need adjusting but its simple to do and moniter. 

[babyjane]

 

my endo is very good.  At my 6 monthly review he gives me 2 blood test forms, one for before the next visit and a spare one in case things go awry and I want a retest sooner.  He looks after me so well, I owe him my life 

[Peroxideblader]

Well I dread to think how useless my gp will be if these tests show a problem they'll give me meds then wave goodbye no follow up knowing them. I'll have to grow a pair..strange thing is since peri I've changed and take no prisoners now I say what I think and don't stand for crap anymore in all areas of my life APART from doctors I turn into a nodding chimp and leave disasstified and peed off after getting nowhere so I need to start being more assertive

[Peroxideblader]

Hi I've just got my thyroid test results back and my free t3 is way too low and my free t4 is just on the lower limit..I'm trying to get in to see my gp but I've just been searching for more info and it's not actually classed as hypothyroidism or pituary fault and cannot be helped only supplements or diet and thyroxine meds don't make a difference.  I'm stuck now as I had to find out if all these nasty illnesses were peri or thyroid and now I'm still no further.  I just know my doctor will either say no action to be taken or suggest the bog standard thyroid meds thinking it'll shut me up when I know it doesn't help. My tsh is normal ..anybody help??? ( says stress which produces high levels of cortisol can inhibit t4 and t3 but seeing as I'm ill all the time and get 3 hours sleep I'm not surprised I'm stressed it's catch 22 )

[Peroxideblader]

Anybody have any advice if they think I have hypothyroidism before my doctors tomorrow as they will say everything is normal even if I'm off the scale about to die...

[countrybumpkin]

If your t3 is too low and your free t4 is bordeline low then your GP should not ignore this!  As you are not conforming to any standard diagnosis they should refer you to endocrinologist although the wait on nhs can be very long.
Can you afford to pay for an initial appt with endo privately?  Then you could at least discuss it with the most qualified person. Your Gp can refer you privately even if they won't do it on nhs.

[Peroxideblader]

I went to the doctors today they'd spoken to consultant at endo and they said although my free t4 is low,  because my tsh is normal not to take further action ..and said free t3 is irrelevant and is only testEd when tsh is high and hyperthyroidism is a possibility..what a surprise...back to square one aarrgghhhhhhh