Has anyone been prescribed thyroxine when TSH was normal?

[strawberrysorbet]

I get the impression there's no hope of me getting treatment unless my TSH rises? Has anyone ever been given medication when their TSH is normal (1-2) but their FT4 levels are low (out of range)?

[diogenes Remembering]

Such a combination indicates pituitary insufficiency - that is the pituitary cannot make enough TSH so the thyroid isn't sufficiently stimulated.

[Clutter]

Strawberrysorbet, the condition is known as secondary hypothyroidism caused by pituitary dysfunction.

cks.nice.org.uk/hypothyroid...

[humanbean]

If you wait to fulfill the criteria that the NHS uses to get treatment you might be waiting a very long time.

I was told my thyroid was "borderline" in the early 1990s. I wasn't given any numbers, so I don't know what that actually meant in real terms. I was still untreated in 2013. That was the year I finally bit the bullet and started treating myself. I've never regretted it.

[strawberrysorbet]

Hi Clutter, someone said to me it could just be that the TSH is slow to rise, and it could take several years to rise with me feeling horrible due to my low FT4 in the mean time? Is that possible?

humanbean - was your TSH normal with a low FT4? I would consider doing this too if I had to. I'd rather a diagnosis, as I would have no clue how to go out about self medicating but I just feel so awful I just want to feel normal again. How do you get access to thyroxine?

[humanbean in reply to strawberrysorbet]

In 2013 I had these results from the NHS, and was told they were normal :

TSH 5.76 (0.27 - 4.2) mu/L

Free T4 12.8 (12 - 22) pmol/L

The following month I was tested again, so the doctor obviously realised things were not quite right.

TSH 5.49 (0.27 - 4.2) mu/L

Free T4 13.4 (12 - 22) pmol/L

Free T3 4.2 (3.9 - 6.7) pmol/L (The only time the NHS tested my Free T3).

Bear in mind that I didn't know then about getting tested early, fasting, etc, so I have no idea what time of day these were done.

I now have copies of results going back to 2009, and these numbers were fairly typical of the results I'd been getting. There was little or no deterioration in my results between 2009 (the earliest numbers I had at the time) and 2013, so my doctor would probably have been happy to leave me untreated indefinitely.

I begged for treatment and was given a prescription for 1 month of 25mcg levo. In reality it made me feel awful, but I didn't tell my doctor that. I asked for a higher dose, and the doctor refused. She said that I only had subclinical hypothyroidism and I shouldn't really have been treated at all, and before she would give me a higher dose I would have to see an endocrinologist. The story gets a bit more complicated after that, but by the end of 2013 I was treating myself. I never did see an endocrinologist.

[strawberrysorbet in reply to humanbean]

Thanks humanbean. At least you do have a raised TSH. Mine is 1.4, with FT4 of 11 and FT3 of 3.8 - ranges are similar to yours.

I didn't know about fasting. I've got a second blood test tomorrow morning so I will skip breakfast and make sure I don't eat too late tonight. Is that enough fasting or do I need to fast the whole day before?

[humanbean in reply to strawberrysorbet]

If you fast, except for water, for about 10 - 12 hours before the blood draw, that will be enough.

[Mollyjane in reply to strawberrysorbet]

Hello strawberrysorbet

Yes I had a normal TSH 2.32 (.27-4.2) and low FT4 12.8 (12-22). With symptoms and family history, my GP decided to trial me on 25mcg of thyroxine. I am now on 100mcg of thyroxine and not feeling any better (my GP won't increase because my TSH is now at .2). I'm still waiting to be referred to an endo as there "maybe something else going on".

Please read up on what Diogenes and Clutter have said above.

X

[strawberrysorbet in reply to Mollyjane]

Thanks Mollyjane. I did suspect central hypothyrodism, and even took the NICE guidelines to the GP with me, but she said it was very rare. She is testing for some other hormones tomorrow though so I'm assuming this is to rule this out.

Thanks to everyone for their help!

[humanbean in reply to strawberrysorbet]

Anything is rare if nobody bothers to test for it. Just because something is rare doesn't mean that it shouldn't be tested for at all!

[Mollyjane in reply to strawberrysorbet]

Please let me/us know how things go.

Xx

[Angel_of_the_North in reply to strawberrysorbet]

If you don't admit it exists, of course it's rare. If you are sure that every large animal with grey, leathery skin is an elephant, you'll never see a hippo or a rhino.

[shaws Administrator in reply to strawberrysorbet]

Doctors used to treat us with a trial of thyroid hormones due to our clinical symptom but that's before the blood tests along with levo was introduced.

Unfortunately along with the blood tests the use of clinical symptoms were thrown out with the new system with the result that many thousands of people are like you, suffering symptoms and being denied levothyroxine until the TSH reaches a magic 10 that the BTA advise.

Some doctors do so when TSH is around 5 so some members decide to self-medicate although it's not the perfect way to do so but how else are people to feel an improvement.

[strawberrysorbet]

Thanks. I saw the GP yesterday and she said my FT4 wasn't "that low" even though it was below range and she said that it would be very unlikely to be because of pituitary problems. She's asking me to do another test as it seems she doesn't trust the result.

[greygoose in reply to strawberrysorbet]

Oh dear! She really doesn't know much about it, does she! Even if it were just above the bottom of the range is would be very low because it should be up near the top of the range. Not everything that is in range is good.

Why does she think it's 'very unlikely' to be because of pituitary problems? You have the classic results for pituitary problems. And it's not as rare as she seems to think.

I think she is just very ignorant. Is it possible to see another doctor that might actually know something about thyroid?

[TupennyRush]

Hi there

I spent 6 and half years with t4/t3 levels below or within 0.3 of bottom of range with tsh mid range being told that I was normal and sleeping 12 to 15 hours per day, putting on 2 to 3 lbs per month (while eating under 1500 cals per day) and having no eyebrows, bald patches on head and no longer needing to shave my legs were all due to an early menopause.

I moved GP practice when my previous set of quacks decided that my symptoms (now joined by liver damage) were caused by alcoholism (despite me not drinking because I didn't have the energy to drink!). I took a straw poll of everyone I knew about how good their GPS were, took a recommendation from a friend who has a challenging personality and my new GP diagnosed me despite my Tsh being normal. He trialed me on 25 mcg levo, t4/3 and tsh stayed the same, which continued at 50 and 75 mcgs (t4 levels actually dropped and tsh went up which us due to blood volume increasing as things work better plus potentially my pituitary working better because of the increased level of t4 apparently) until I got to 100 mcgs when my T4 finally hit mid range.

So, they will diagnose you based on low t4/3 without tsh rising but it takes a good GP and they're hard to find. I am extremely lucky to have found my current GP. Good luck. See if they will trial you on levo