T4 to T3 conversion issue: Two months ago I have... - Thyroid UK

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T4 to T3 conversion issue

McPammy
McPammy
33 Replies

Two months ago I have been finally prescribe T3 privately What a difference it has made to me. For years I have been back and forth to my GP not knowing what my problem has been. I was diagnosed with Hashimotos 12 years ago and given Levothyroxine but still I struggled through. I’ve just got my blood tests from years ago one in 2004. My T4 was 16.9 (7.86-14.41) and my TSH 4.6 (0.35-5.50). Also another in 2004 TSH 4.55 and T4 14.6. T3 never tested until last year. So even back in 2004 it would seem to me that my T3 was probably struggling then too. When I was finally diagnosed with Hashimoto in 2008 my TSH was 35.94(0.35-5.50) and my T4 was 8.9. (7.86-14.41). My GP kept sending me away saying I had depression but I knew I didn’t. I knew I had a problem as I was in a mess. It looks as though I may have had a conversion issue for many years and slowly got so bad I couldn’t walk or sit up and eventually lost my brilliant job

I just can’t believe that the NHS will not check T3 when it has such devastating effects on people Even now I’m privately on T3 I find it hard to get checked on routine bloods

Now being on T3 my TSH is 0.46. My T4 is 11.4 and my T3 is 5.4(3.7-6.0) and I feel like a new person. Some adjustments but generally feel great.

Isn’t it so very sad and annoying that for 15 years, that I know of, I didn’t have the quality of life that I could have if they’d checked my T3 and given me medication back then.

This is really a post to say to anyone having thyroid issues to insist on T3 bloods along with TSH and T4. Along with B12,Ferritin, D and Folate. I was deficient in B12 and ferritin too. Now on life long injection and medication

33 Replies
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SeasideSusie
SeasideSusieAdministrator

McPammy

I agree with all that you have said. I honestly don't understand why doctors don't see the importance of looking at the whole picture.

I believe my Hypothyroidism started in 1973 but it took 2 years of going to the doctor with symptoms which were put down to being a young mother so of course I'm going to be tired! I lost 2 years of my baby's life which I can't remember and will never get back.

Once on Levo I was fine for about 20 years, then went downhill. What happened - Levo increased again and again and again until way over range FT4 and suppressed TSH and very unwell. Then an endo wanted TSH in range and messed me up completely until I needed looking after.

After almost another 20 years wasted I helped myself after joining this forum and if only, if only, doctors understood the importance of good vitamin levels and looking at FT4 and FT3 (and sometimes the wider picture of adrenals, etc) instead of relying on TSH only, I might have been well enough to have a normal life.

I was under the impression that doctors were intelligent, thinking, questioning people not robots who blindly follow the pathetic little they've been taught about thyroid disease and are happy to see their patients suffer. Thyroid treatment sucks.

Wednesday's rant over :)

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McPammy

It’s awful just awful. All the time they probably knew what help was needed and swerved it. Or as you say are poorly trained which is also unbelievable.

I hope you are ok currently.

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DippyDame

Hear hear....love a good rant!

Intelligent or not medics just don't have the right information....

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Grayson0410

I have the same problem, I don’t convert - fought like hell to get on the books of the endo team at the hospital - you have to get referred from the GP because only a consultant can order a T3 test, a GP could even if they wanted to, well that’s the case her in Wandsworth London - It’s because the T3 test is expensive according to the phlebotomists at the hospital - now I’m checked every 12 months because I’m stable (it was every 6 til they’d sorted it) Lio (T3) isn’t cheap either - maybe ask for a referral to the endo team at your local hospital?? Good luck - I know what it’s like fighting them when they’re supposed to be the experts!!

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SeasideSusie
SeasideSusieAdministrator
in reply to Grayson0410

Grayson0410

It’s because the T3 test is expensive according to the phlebotomists at the hospital

Have a look at Jim's post from yesterday

healthunlocked.com/thyroidu...

Expensive test my eye!

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Grayson0410

Oh my God!!! 92p, and it’s constantly what I’m told!! I’m waiting for them to tell me that T3 is too expensive to prescribe next, the consultant having to order the test is true for me though, well in my area anyway - as my GP is actually really good and will always mark it to test for T3 whenever I’m get bloods and they never do, bounce it back saying it has to be a hospital consultant

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SlowDragon
SlowDragonAdministrator
in reply to Grayson0410

GP needs to mark on request patient has central hypothyroidism....then they might test FT3

Personally I abandoned NHS testing years ago. Waste of time and effort

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SlowDragon
SlowDragonAdministrator
in reply to Grayson0410

FT3 test costs just 92p

They don't want to test FT3 ....because then they might have to treat

It's utter madness......over 2 million people in the UK are on Levothyroxine. About 80-90% are female.

At least 10% are recognised by medics as having poor response to Levothyroxine.....would suspect figure is MUCH higher....more like 20-30% as an absolute minimum.

personally I have only ever met ONE person on Levothyroxine who said they were well

Yet I have, in accidental conversations, spoken to at least 100 people face to face in daily life, on Levothyroxine.....all of whom had very significant health issues....clearly the majority due to inadequate dose of Levothyroxine, or poor conversion or low vitamins or mix of all 3

Every single person who I have recommended see particular endocrinologist from Thyroid Uk list has been prescribed addition of small dose of T3, almost always with same miraculous results

There needs to be immediate and dramatic overhaul of testing, treatment options and most importantly Government needs to take action to force price of T3 significantly down. Legislation was passed, but still no action has been taken against price cartel

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McPammy
McPammy
in reply to SlowDragon

It makes it more of a disgrace if it’s only 92p for T3 test. Like you say it’s not the blood test per se. It’s the fact that they don’t want to prescribe the T3 Medication. Maybe that’s the big plan. Don’t prescribe then lots of people will go private. Ok for those who can just afford it. For those not able to pay private the NHS should hang their heads in shame. Leaving vulnerable sick people in our society. Knowing they either don’t know enough to challenge them or they are too unwell to do so. When the time is right for me I am definitely going to challenge my whole situation. It has cost the NHS more in finance in the past year than if they’d prescribed T3. And the same goes for 1000’s of sufferers. £150 that’s all they needed to pay out. The CCG people need sacking. One day history will look back on all this and there will be an outcry. I hope it’s not too long away for current and future sufferers.

There is an article in the BBC news today about a UN expert criticising the UK government on how it’s lead many many people into poverty by cuts to public services in order to get the debt down. This is another example on how things have been badly handled along with the NHS and the out pricing of drugs that are cheap in lots of other countries.

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SlowDragon
SlowDragonAdministrator
in reply to McPammy

Prescription for T3 should not be expensive. It isn’t in rest of world, only here in Uk

C&MA need to get on and get case to court

Look how many decades it has taken to get contaminated blood and haemophilia case to court in UK .... years and years after rest of Europe

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McPammy
McPammy
in reply to Grayson0410

Hi. It may take a while to convince you need T3 and if you get it in the NHS you are really lucky. I had to go private.

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greygoose

I have many reasons to believe that I've been hypo since I was about 8 years old - so many symptoms! Doctors just told me I was depressed, lazy, greedy and a bit thick! I didn't actually get tested until I was 55, when I got referred to an endo by mistake! And, we're talking about two different health systems, here: the NHS and the French health system. So, it's not just a problem in the UK. It's universal.

Doctors are badly educated in thyroid because Big Pharma wants them to be. And Big Pharma subsidises med schools, so they decide what doctors learn. If doctors learnt to make us well, but diagnosing and treating correctly, BP would lose a lot of money from the sale of all those drugs that doctors prescribe to treat our symptoms, rather than the root cause. So, doctors know nothing about T3 - some even think it's unnecessary! And they know nothing about Hashi's. They only know to look at the TSH, and prescribe levo until it's somewhere in range. And, as they've also been taught that they are superior beings, and all patients are idiots, they're not going to listen to us. If we still feel unwell with an in-range TSH, then it's the psychiatrists that profit, not us!

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McPammy
McPammy
in reply to greygoose

I’m sorry you’ve suffered too Greygoose for all those years. It really is appalling. I get entirely what you mean about Big Pharma only training doctors in what they want them to only know so medication can be pushed into patients and make very big bucks for themselves. I worked in the Pharmaceutical area for a while and understand. I was in flu vaccine though.

Best we go private then if we ever want to get well. Unless one has an understanding and patient doctor to help them.

My sister who had thyroid cancer and was misdiagnosed for depression had just had her first T3 results ever in 10 years. It’s 4.4 (3.7-6.0). Not as bad as mine was but still not great. Tomorrow we go to see her NHS Endo. I bet he won’t help her either.

Thanks for your story and taking time to reply. At least we are getting our heads around things. Well i am. 11 years having no clue just trusted Drs. Now I’m armed with lots of info thankfully to this fabulous forum. 👍😀

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greygoose
greygoose
in reply to McPammy

I don't think I've ever fully trusted doctors, not since childhood - although I confess, I did think they had more knowledge than they actually had. Even after my diagnosis, the endo told me the reason I wasn't getting better was due to my 'negative attitude'. Hah! Now, I self-treat, because - let's face it - I couldn't make more of a hash of it than just about every doctor I've ever seen in my life. And, I'm 74, now, and I've moved around a lot. So, that's a lot of doctors!

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McPammy
McPammy
in reply to greygoose

Negative attitude... what a joke! That did make me laugh in a sad way. I was turned away 5 times and my sister with cancer was too. They said we both had depression. I wanted to smash their faces in at that point. How wrong are they!

Good for you for looking after yourself. Well done. I might need to do the same. It’s a poor state of affairs. I’m 60 now and I’m sure too I’ve had this condition for years. There have been a few times in my life my GP said I had depression. I always thought I really did not. They even said I was having panic attacks but they never felt like a panic attack. I was in a bad car crash when I screamed like I never have in my life before or since. I was hit by a 38t HGV then 5 cars. I always thought I’d blown a fuse. Maybe I did something to my thyroid in some way. My theory but maybe not that.

So more Endo stuff with my sister in the morning.

Thanks Greygoose I always feel I get a good response from you. 👍

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greygoose
greygoose
in reply to McPammy

You're welcome. :)

Did you suffer from whiplash after the car accident? Sounds like you might have. That's a lot of weight to go crashing into you! And, whiplash can cause thyroid problems. Or, you might have already been hypo, and the whiplash made it worse.

But, it's doubtful you yourself did anything to your thyroid - what could you possibly do? I know that we always tend to blame ourselves for things like this, ask the question, 'what did I do wrong?' But, where thyroid is concerned, it's very, very rarely out fault. :(

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McPammy

I did have whiplash. I was in a hard neck brace for a couple of weeks. Black eyes. But no other injuries unbelievably. My partner had broken ribs and a big gash to the leg and head who had just had a kidney transplant. Half the car was missing and our dog was thrown out onto the motorway. He survived. He was chipped and someone brought him to us thankfully. The dog not my partner 🤣. It took me a while to drive on a motorway again as I saw the HGV heading towards us. The driver of the HGV was travelling on the hard shoulder. Why I’ll never know. We had broken down on a large flyover and told by RAC to stay in the car as there was no verge to stand on and safer in the car. He hit us at full speed. Threw us into the motorway and we got hit by all the oncoming traffic. Nightmare.

I’m fine now though.

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greygoose
greygoose
in reply to McPammy

Yes, I know what that's like. My ex and I had an accident on the M1 in 1969. A transit van blew a tyre and was dancing all over the three lanes. It hit us on the off-side back corner, and we swerved into the side of a coach. That set us dancing across the three lanes, too. Until we hit something else, or something hit us, and we stopped. Our van was concertinaed. And all our luggage in the back, crushed. And, whilst my ex opened his door and hopped out, mine was stuck. The driver of the transit came rushing over and with his two bare hands, bend my door in half and dragged me out bodily. But, all I had was a two inch cut on the back of my head, where a suitcase or something had hit it. And, of course, a bad dose of shock. I had trouble getting into a car for a long time after that, let alone driving on the motorway!

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McPammy
McPammy
in reply to greygoose

Oh my good god. We are both lucky then hey to be alive to tell our stories. You had a lucky escape. I know that feeling of not being able to get back on the motorway. I got back in a car quite soon afterwards but was terrified. All unreal thoughts constantly. I had PTSD and was under a councillor for 6 months at St Mary’s in London. like I say we are lucky. My partner also had panic issues. I hope your partner was ok eventually too. He was lucky being able to step out.

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greygoose
greygoose
in reply to McPammy

Oh, there was nothing wrong with my ex! Indestructible, that one! And he couldn't understand how bad I felt afterwards. I got no sympathy from him. Oh, well, water under the bridge. Yes, we were lucky. It could so easily have gone the other way.

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McPammy
McPammy
in reply to greygoose

We all need sympathy or empathy at times. Best he’s gone then now. I hope you’ve found a new kind and loving man in your life now who’ll support you when needed.

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greygoose
greygoose
in reply to McPammy

Nah, I just don't seem to attract that sort of man, I'm afraid. Most men see me as a challenge that has to be defeated, nor supported or looked after. :(

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McPammy
McPammy
in reply to greygoose

Oh dear. What a shame. 😥

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greygoose
greygoose
in reply to McPammy

Well, that's life. It's all a gamble. :)

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shaws
shawsAdministrator

They withdrew without notice T3, those who should know better - but really don't understand about hypothyroidism - or the clinical symptoms and just talk a lot of nonsense when they state the levothyroxine only is to be prescribed.

I, amongst many other members only recover our health on T3 and many with a combination of T4/T3. Others find NDT suits them. Quite a number of researchers have proven that a combination of T4/T3 is best for many but those who are 'unexplicably' unknowledgeable come up with the rules. This shows their utmost contempt for research and completely ignore it instead of ensuring patients get what makes them recover. They really don't understand the function of thyroid hormones, and I doubt if they know an active thyroid hormone from the inactive one.

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McPammy
McPammy
in reply to shaws

Well said Shaws! I agree with everything you’ve said. It all beggars belief. Do they not realise that leaving people still not well means more expense for the NHS in the long run. If people got T3 that needed it. That probably would be it really. They could get on with their lives. Instead they are back n forth to GP’s and Endocrinologists. Some have to stop working. Some need to claim sickness benefits. It’s just bad financial practise as much as bad health care. No wonder the NHS is crashing. It’s because it’s so poorly managed.

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naturegirl3434

I am so glad that you are feeling better Pammy! Unfortunately I couldn't tolerate the T3 but I am suffering with Hashimoto's as well. My blood pressure went back to normal within a few days of stopping it. Glad you are on the mend. I am feeling better than I was. :)

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McPammy

Hi. That’s really good to hear. I’m so glad youre on the mend at last. So happy for you. I couldn’t be without T3 now. I do also take T4 still.

Keep positive and keep in touch! Xx

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DippyDame

So pleased you are feeling better. My story is similar, decades of poor health, whiplash from a hefty rear end shunt during my second driving lesson (instructor's week old car...he knew the young driver and gave him "what for", followed a few years later when I hit a patch of ice and rolled into a deep ditch! Ouch! Then at age 29 both parents died within 3 months. Cleared family home and bought a small house... then started a new job. Physically and mentally exhausted! Over time diagnoses of fibro, CF, IBS...and the usual depression, which I denied!.

Twenty or so years ago hypo was diagnosed, never felt well told medics there must be/was another answer but was told to do what I was told and stop imagining it was something else. They didn't have a clue!

About 2 years ago I could barely function, forced myself to do some research, found TUK, firstly discovered I have the Dio2 mutation/homozygous then that I am thyroid hormone resistant. I've been self medicating T3-only for almost a year, still not wonderful but so much better. Now found a "listening" endo who is going to check my adrenals (test results not great).....nearly 74 and can't believe how much time and opportunities I've missed, but very grateful to have a supportive family.

Not prepared to give in to all of this...

Your post is an important one...hope it helps other members.

PS I have an old school friend who has classic hypo symptoms but her GP insists all is normal when clearly she is not.... but, can I persuade her to act....doctor knows best she says. Grrrrr!

Take good care

DD

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McPammy
McPammy
in reply to DippyDame

Your story is so similar to mine as you say. Seems like there’s many of us on this fabulous forum.

Once I’m up and running literally, I will take this up with the correct people within the NHS. I doubt I’ll get anywhere but I just cannot leave this knowing what I now know. I just need to talk to someone and get an honest answer.

I hope you’re ok and level at least on your medication.

Keep positive is what I say and do mostly. Maybe one day you’re friend will listen to you.

P x

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BrecklandRanger

Glad you're making some headway (albeit slowly!).

Can I ask what dosage of T3 you're on?

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McPammy

Yes no problem. I just take 5mcg twice a day. It’s brought my T3 up from 3.9 to 5.6 (3.7-6.0). Also my TSH is now 0.46 from 4.86(0.45-5.50). I also have 75mcg Levothyroxine a day. I feel so so much better. Better than I have in years.

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Hidden
Hidden

Just to say I've had hypothyroidism 20 odd years along with pernicious anaemia and I've had the hellish ride we all seem to have had because of doctors and endocrinologist here in UK. What upsets me the most is 20 years on it's no different, it seems even worse the way people are being treated with lack of understanding about hypothyroidism and how complex it is and the horrible suffering the symptoms are. And doctors/endocrinologist don't want to give us choice as to what thyroid hormone would help us individually. Can't even get a full thyroid panel blood test. It's like oh yeah your "TSH" is anywhere in range as long as it's in range , s*d the symptoms take your thyroxine Mrs and just get out , out the door, come back if ya dare and I'll put you on antidepressants. Just who is getting a full Thyroid panel and full vitamin and hormone tests. Who is getting T3 or NDT without screaming to them and going home with severe anxiety after the stress of pleading with your gp or endocrinologist. It's hell. I hope they all suffer it themselves eternally. I've not come across anyone in the medical profession who understands hypothyroidism in over 20 years. And personally I now stear clear of them because I know they just will hasten my suffering. Stay well away.

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