On self diagnosed T3 and GP not happy? - Thyroid UK

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On self diagnosed T3 and GP not happy?

Deb_g profile image
11 Replies

I've been on T3 for the last 5 years after going to see Dr P and I've felt ok

Recently I've had blood tests - a whole profile-at the GPs for a bowel prob and the GP is sooo unhappy regarding low T4 and high T3 and about me self diagnosing. I am going for my 3rd test this week as she can't cope with "out of range"

I went through 15 years of feeling rubbish to get to this point - has anyone else had to deal with a GP in this way?

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Deb_g
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11 Replies
Naomi8 profile image
Naomi8

I was on T4 for 17 years.Slowly became more & more unwell with hypo symptoms despite GPS always saying"blood tests OK"

In 2011,after prolonged perceived stress(my personal reaction to life changes)I crashed overnight into a 2 year depression with severe anxiety.Saw Dr P in 2012 & focussed on beginning to heal the adrenals.2 yearsof depression was followed by 2 years chronic fatigue.Re-located within UK & new GP practise agreed to prescribe T3.Have not yet told them I have dumped the T4 & at present am recovering on T3 only.

Just had blood tests done,& of course,have come back very suppressed TSH,higher T3.Awaiting the summons from GP,where I will "confess"

Awaiting delivery of BYO T3,because I expect the GP,guided by the endo I have not seen,to freak out!

I am not going back to how I was!I am willing to try adding some T4 back in,& trying NDT,later.

Suspect I may have the DI02 & MTHR gene varients & don't convert.If not,hopefully a period on the CTRM T3-only method will heal my adrenals & I can go back to using a thyroid replacement with some T4.

I have done the 23&ME gene test that will tell me if I have these varients.

So,by a slightly different route,we are in a pretty similar way.My GP is even anti me supplementing B12,D3,iron

Deb_g profile image
Deb_g in reply toNaomi8

Thank you for your reply- you found very similar to myself- I also supplement with B12 and D3 and iron but I stopped taking those before the test hoping that they would be low enough for injections and/or supplements because I'm sick of the price of this lot- but IM NOT GOING BACK!!! To how I felt before!

You did well to get your GP to prescribe T3- at least that's half the argument

X

Naomi8 profile image
Naomi8 in reply toDeb_g

I asked this new GP if she could test for FT3 & she showed the results to the local endo,who agreed to me trying adding some T3.I focussed on my symptom of fatigue.Did not bang on about all the other hypo symptoms!I was amazed when the endo agreed,because 3 previous Gps had said no to FT3 tests & T3 trials

in reply toNaomi8

Well done Naomi in solving your own hypoT.

If it turns out that you have the genetic variants you will have a very clear case, and you could perhaps then ask for a referral to an endo because you will be well beyond the level of the GPs expertise. (clutching an endo name recommended by people here.. obviously).

The GPs objection to supplementing nutrients can only logically be that you may be supplementing when your levels are already high - has s/he offered tests? And in any case, supplementing D during a British winter is perfectly reasonable and backed by good research. It would be worth knowing your ferritin level though.

It is possible to overdo iron, as I'm sure you know. Though the likelihood is obviously much lower if you are pre-menopausal.

You have fought hard and intelligently to get where you are, and I am sure you will win your next battle.

Naomi8 profile image
Naomi8 in reply to

Thank you for your reply & raising some helpful points,Aspmama-good idea re gene varients!

My supplement levels are "in range" according to the blood print-out on my previous & present tests.They have been less than optimal as suggested by TUK recommendations & I have raised the ones that needed raising by switching to methyl forms of B6, B12 & folate & upping my intake of D3 & iron.These are now at a good level but not over range.

shaws profile image
shawsAdministrator

Maybe give your GP a copy of this plus the connected link:-

thyroiduk.org.uk/tuk/campai...

Besides the blood tests she uses were for the use of levothyroxine alone. Previous to that patients were diagnosed on their clinical symptoms alone and given NDT until they improved and symptoms resolved.

You can say many have been forced to source our own thyroid meds due to the fact that levo didn't make them well.

The blood tests in the UK are for the use of levo only and when on T3 only, we will have a high T3, minimal or lower in range of T4 and low /very low TSH. The main question is 'how does the patient feel' and if well they're on the proper dose of T3.

This is a link by a doctor who, himself, took 150mcg daily. He only took blood tests for the initial consultation and ignored them thereafter.

web.archive.org/web/2010103...

web.archive.org/web/2010103...

bobsmydog profile image
bobsmydog

I was just told that they were wiping their hands of me. Oh well, that's life!

humanbean profile image
humanbean

If a doctor has only got experience of blood test results in people who are on levo, then the results of someone on T3 only will come as a huge shock to his/her system. It may be the first time your doctor has ever seen results like yours.

Zephyrbear profile image
Zephyrbear

'She can't cope with "out of range"...'??? Wow!!! What the hell does she expect you to do? Spend your life feeling like crap because it will make her feel better??? Tell her to lump it or change your GP! It's how you feel that's important, not her self-inflated sensibilities!

Glynisrose profile image
Glynisrose

Yes! Just remember your doctor is an advisor only and cannot dictate to you.

Deb_g profile image
Deb_g

I've been to the GP today for my telling off- she's saying my T3 is far too high as I expected at 35 when the range should be up to 6 and she says I've killed my thyroid ( I've only got half anyway) - if she saw these results she would be treating someone for hyper- even though I said I don't feel hyper in any way- oh that's because your body has got used to it-----and while she can't tell me to stop self medicating she pointed out that the T3 is causing other health problems.

My liver levels are slightly raised- T3 apparently

My bowels have IBS type symptoms- must be the T3 -

I can expect to have a heart attack any day soon and she would like me to have a bone density test as T3 causes osteoporosis - ( I've broken a bone in my hand)

I saw Dr P 5 years ago and started to feel so much better on the T3 so I don't intend to stop

I tried to explain about 5 years ago not being able to get out of bed I was so exhausted- her reply? Everyone would feel better on T3 - she would like me to stop taking the T3 to give my thyroid chance to recover?!?!?

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