An hour out of my life I won't get back! - Thyroid UK

Thyroid UK

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An hour out of my life I won't get back!

KT304
KT304

Bi-annual waste of time...and got stunned into silence with the ineptitude...has anyone ever had that? That what you hear makes you think "Huh, are you freaking serious?!?!"

Levels (NHS blood Test) are:

TSH 0.01 (0.27-4.5)

T4 13.4 (11-23)

T3 6.30 (3.1-6.8)

100mcg T4 and 25mcg T3. Full compliance, ie left 24 hours for T4 and 12 Hours for T3

Been at it with the B12 and Folate, B12 989 (197-771) and Folate 20 (2-18.7) Ferritin 88.9 (20-130)

Feeling ok, got some stomach issues still and chronic itching which may be liver related, want to check that out with my GP and some weird acne on my head thing and very bad hairloss. But I got reduced and told that I would expect to feel "tired" with a reduced dose. I said I work a tough job, I cannot be tired, he said that is what will happen! He acknowledged that I did not agree with a reduction but wants to try 100mcg Mon to friday and 75mcg Sat/Sun and will revisit next year, his aim is TSH at 0.5.

I come out of there, saw the beautiful sky, looked up, breathed out and thought "What a ****".

Happy Wednesday everyone!

22 Replies

How nice of your GP to want you to feel ill. Did he even check to see if you had any signs of over-medication? If you have no signs of over-medication, you aren’t over-medicated. Simple as. Print some of the studies about the problems of treating by TSH only from this site and ask the t**t to try reading them. They need to treat the patient not the blood test. What a crock of s**t.

KT304
KT304 in reply to MissGrace

Sadly it's an NHS endo and no, not asked anything about over medication! I have some articles stored so will hunt through and see what I can find. He did say if I wasn't on T3 I'd not be tested for it :-O

SeasideSusie
SeasideSusieAdministrator

KT304

Why on earth would he want to reduce your Levo when your FT4 is already so low in range? And your FT3 is in range too so nothing to worry about.

TSH doesn't matter when you're taking thyroid replacement hormone, it's going to be low particularly when taking T3 anyway, what a pity most doctors don't understand this.

I'd just carry on as you are, if you're not seeing him until next year.

KT304
KT304 in reply to SeasideSusie

Thanks Seaside Susie, I have some T4 spare and have ordered some, I may increase, just to see what happens or use it to top up what he has taken away.

SeasideSusie
SeasideSusieAdministrator in reply to KT304

KT304

If you have any natural T4:T3 conversion left (I take a combo of Levo and T3 but find if I alter my Levo dose it slightly alters my FT3 result as well as FT4), then if you increase your Levo keep an eye on your FT3 result, you might need to drop T3 a touch to keep it in range.

shaws
shawsAdministrator

He is afraid due to your very low TSH.

Doesn't seem to be aware that with a T3/T4 combo, the results wont equate to taking levothyroxine alone.

Your blood tests look very good indeed. I think I'd just ignore him. (I am not medically qualified but levo was an horrendous experience).

Give him a copy of the following and highlight the appropriate statement about TSH and tell him its by an expert in all Hormones.

hormonerestoration.com/

As you are taking a combo T4/T3 he should expect a very low TSH. Considering that the blood tests were introduced with levothyroxine alone numbers don't and wont correlate.

Before levo we took NDT and had no blood tests at all and it all depended on relief of symptoms as dose was increased gradually till they disappeared. How wonderful that would be if they changed tack and considered relieving symptoms rather than fitting a 'TSH' into a particular number.

KT304
KT304 in reply to shaws

Thanks Shaws! The website is very interesting, and lead me to wonder if the NHS ends would regard a doctor from overseas not reputable (that is not my opinion), so I've just managed to log into the Lancet! (Via my OU email) Just going to check if I can download some articles on TSH etc.

I would lurve to tackle an assignment on TSH: The suppression depression and mythological standpoints of endocrinologists across the UK.

shaws
shawsAdministrator in reply to KT304

We have Advisers to TUK who are doing sterling work too. I have read that it is due to Big Pharma paying doctors to prescribe Levo plus blood tests when first trying to replace the very original thyroid hormone replacement, i.e. Natural Dessicated Thyroid Hormones made from pigs' thyroid glands and many recover with this but it was withdrawn due to lies by the BTA. One of our Advisers before his death wrote an article to them - a REBUTTAL - and he wrote every year for three years for a response and they never did. Just shows the contempt for research if it doesn't suit them.

thyroidscience.com/Criticis...

thyroidscience.com/letters/...

We, the patients, know what suits their bodies and what relieves their clinical symptoms, and what makes them feel well again - even if it takes some time. Someone cannot face you across the desk and just look at results and pronounce a diagnosis. Symptoms are the priority and optimum hormones optimal.Once upon a time, all doctors/endos knew all clinical symptoms but nowadays they only look at a TSH result and adjust accordingly.

Tell him to experiment on himself, not his patients! I very much doubt that small reduction will cause your TSH to rise, considering you're taking T3. But, there was nothing wrong with your TSH as it was. But, at least he didn't reduce your T3!

KT304
KT304 in reply to greygoose

Very true! To be honest this is why I stock pile, you never know what may happen. Driving back I did wonder how people with say no internet, or no ability to pay for, to source alternative means of thyroid replacement drugs? Because I'm driving home thinking the first thing I will do is order more T4! What will happen say when I'm retired, do I have to make sure that I have a "Thyroid drug fund"? And what about these poor people who don't get past these incompetent experimenters and they suffer unnecessarily? *Shakes Head*

greygoose
greygoose in reply to KT304

It is, indeed, a terrible situation. :'(

I know the feeling, an Endo I'd seen only once, some two years previously, told my GP in a letter, to reduce mine without even talking to me never mind seeing me first. Still, never mind, at least he had the grace to warn you about feeling tired ........... and yet there was Dr Kamila Hawthorne on You and Yours today telling us that we should ditch the private testing and stick with our NHS Doctors as they'll see us right.

crabapple
crabapple in reply to MaisieGray

Thanks for the heads up. Worth hearing. (Starts 32.25 in, if anyone interested.)

KT304
KT304 in reply to MaisieGray

Gosh that is awful! Without even seeing you? To be fair to my GP, she has been really good to me. Once I step foot in a hospital it all goes a bit Pete Tong. I refuse to be tired!

MaisieGray
MaisieGray in reply to KT304

Happily I'm now seeing two great Endos at my local hospital, but you couldn't make these things up, could you? #RefusingToBeTired :-)

KT304
KT304 in reply to MaisieGray

Glad to hear you have great endo's. I'm in a new area, moved around 18 months ago, still unable to find a decent consultant, I do not need a diabetes specialist....

There should be a scheme like trust pilot, with ratings for these people...they should be marked, out of ten perhaps, KPI's, ethical stance and prior study for all to see and we decide who we place our precious life in whose hands we deem most suitable!

I cannot be tired, I work nearly full time, and I study full time, learning the joys of Kenyes and Economics. Veblen is very interesting too.

Stealing the hashtag #refusingtobetired

MaisieGray
MaisieGray in reply to KT304

The # was created for you lol, enjoy ..... Just checking, are you aware that you can be referred to any hospital of your choice for secondary care (subject to the relevant specialty being available there of course), so could even stay with your previous one if you wanted. I agree with the trust pilot idea, or something like Trip Advisor - "my stay at this hospital was marred only by the inconvenience of being rendered near-comotose by the withdrawal of my drugs ...."

Aah the joys of Keynes, I remember him from my Business Studies days which I hated every moment of, but which bizarrely and perversely culminated in me achieving a pass with Distinction. Another life time ago ... But wishing you good luck and enjoyment in your study!

KT304
KT304 in reply to MaisieGray

I bought the book - General Theory. It's enough to render an insomniac sleepy...Yep that's me, Business Studies with a speciality in Economics. There are only so many ways you can write a sentence on Globalisation that doesn't include integrated, interconnected and interdependent haha!

Thank you! I'm attempting 120 points in one year. No endo with archaic ways will stop me :-P

humanbean
humanbean in reply to KT304

There should be a scheme like trust pilot, with ratings for these people

Such a website already exists :

iwantgreatcare.org/

However, I've never personally found it of any use because so few named doctors appear on it.

Treepie
Treepie in reply to KT304

Veblen very interesting to sociologists as well .

Karen09
Karen09 in reply to KT304

Off subject, but it surprises me how austerity and the money tree analogy is accepted so uncritically in the UK and macroeconomics is dismissed and even criticised by the press during the time of austerity being driven through the UK after the crisis. I wonder if it is because alternative theories such as Veblen's are given equal measures over here as compared to in the States?

Great idea along with #lowTSHnotover-medicated.

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