Advice again please...nhs endo wants me well "t... - Thyroid UK

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Advice again please...nhs endo wants me well "to a point" and says I feel well now as I am essentially hyper!! Suggested drop in t4..

BiscuitBaby profile image

Hi again folks

I would really appreciate some advice. I attended my nhs endo appointment today. He suggested that I drop t4 to 75mcg from 125mcg and to increase my t3 from 2x5mcg to 3x5 mcg. He said that I am essentially hyper as my tsh is suppressed. He told me that I only felt well because I was hyper but when I asked about remaining symptoms he used them as evidence that I was "hyper". I told him I was concerned that when tsh was in range before I felt dreadful and I had no quality of life and I wanted to be active like I used to be . He said that I could possibly stay on t3 "till I was about 50 then stop it". Is life not worth living after then??? He then went to say I was perimenopausal and that was what was possibly wrong.

I am not sure that dropping my t4 by such a lot and increasing t3 is going to raise my tsh? From what I have read t3 tends to lower it? Is he setting me up for failure?

Sorry for the rant but I just felt not listened to. He literally said to me when I told him I wanted to feel well, that he wanted that too...to a point. It was more important that I get my tsh nicely into the range!!! I could cry! Why is it so hard!!!

56 Replies
SlowDragon profile image
SlowDragonAdministrator

Was suggested on here 2 months ago

healthunlocked.com/thyroidu...

you might try a small dose reduction in levothyroxine ……not obviously that ludicrously large drop

Perhaps 125mcg 4 days a week and 112.5mcg 3 days a week

Presumably you have been working on improving low vitamin levels

Have you cut gluten out yet

HiThanks SlowDragon. Just had a read back through that. I'm not averse to changing my dose and I am a little concerned about the suppressed tsh. I am a little worried that he will stop prescribing t3 altogether if I don't manage to fit into to range! He also told me to test 2-4 hours after morning dose.

I am working on vitamins and I tried gluten free but didn't feel it made a difference! Thanks for taking the time to read! I don't think I cam reduce to 75. He told me to do it with my current prescription of 100s and 25s! Going to have to get my calculator out!!

SeasideSusie profile image
SeasideSusieAdministrator

BiscuitBaby

Is he setting me up for failure?

Yes, in my opinion, if not he's setting you up for a lifetime of feeling unwell.

I'm beginning to think endos are dangerous. They don't seem to have any idea of what T3 does yet they are prescribing it.

He suggested that I drop t4 to 75mcg from 125mcg and to increase my t3 from 2x5mcg to 3x5 mcg.

No, dose changes for Levo are no more than 25mcg at a time.

Taking away 50mcg Levo can't be replaced by 5mcg T3. It's said that T3 is, in it's effect, 3-4 times as potent as Levo, so 5mcg T3 equates to 15-20mcg Levo so that's not going to help you, he is effectively lowering your dose considerably.

He told me that I only felt well because I was hyper but when I asked about remaining symptoms he used them as evidence that I was "hyper".

So he doesn't know that someone with hypothyroidism cannot possibly become hyperthyroid. He should understand that you can be overmedicated but you can't suddenly regenerate your thyroid and become hyperthyroid.

I told him I was concerned that when tsh was in range before I felt dreadful and I had no quality of life and I wanted to be active like I used to be . He said that I could possibly stay on t3 "till I was about 50 then stop it". Is life not worth living after then???

Oh dear, in that case my life stopped being worth living 24 years ago 😭 oh, hang on, I added T3 6 years ago, nobody told me you can't take it past 50 years of age 😮

I am not sure that dropping my t4 by such a lot and increasing t3 is going to raise my tsh? From what I have read t3 tends to lower it?

Unlikely to raise your TSH. Taking T3 does lower TSH. See, he's prescribing it but knows nothing about it 🙄

He literally said to me when I told him I wanted to feel well, that he wanted that too...to a point. It was more important that I get my tsh nicely into the range!!!

Numbers, numbers, numbers, why are they so obsessed with satisfying a number rather than trying to help a patient be well?

This endo will never make you well.

Far be it from me to suggest that you ditch the endo and do your own thing but .........

Hi SeasideSusieThank you for getting back to me. I was seeing a private endocrinologist who was happy with my current dose and said that the osteoporosis/arterial fibrillation/suppressed tsh was over used and outdated! I only went to the nhs for a prescription I didn't have to pay for! It's a 12 month trial and I worry that he'll say its been unsuccessful. He says if things aren't in range in 3 months he'll take levo down to 50 and up my t3!! I don't even know what that will achieve!

I actually couldn't believe it when he suggested that I stop t3 after I'm 50!! Maybe he meant the opposite! Life begins at 50 so I'll not need it!!

SeasideSusie profile image
SeasideSusieAdministrator in reply to BiscuitBaby

He says if things aren't in range in 3 months he'll take levo down to 50 and up my t3!! I don't even know what that will achieve!

You'll be even more unwell.

Run away, fast.

Pay for your T3 (source your own without prescription), your private endo was spot on.

I feel a bit stuck now! I wish I'd just left it alone and kept paying. I'll meet him halfway. Who knows. It might be a genius move and help but I'm not doing anything to the detriment of my health!

You don't have to meet him halfway. You know how you feel, if you don't want to do what he says don't go back. Insist on a different endo if you want to, but......

Does he have any idea how people feel when they're hyper? I can assure him, they don't feel well! He honestly hasn't the slightest idea what he's doing and knows nothing about thyroid. As Susie says, he'll never make you well. He doesn't even want to. He doesn't care if you're well or not, he just wants your TSH in-range, and to hell with all the rest. Not only does he not know anything about T3, he doesn't know what TSH is, or what it does. I agree, he's dangerous!

As for stopping T3 at 50... lol I would have laughed in his face. I'm 77 and still taking my 75- ish mcg T3 only every day. He'd have to wrench it out of my cold dead hands to get me off it! What a clown!

😂😂. That did make me laugh greygoose! My hands will be bloody cold by the time he's finished with me. Just like the rest of me! I'm going to meet him half way but not at the expense of my wellbeing! If I feel ill I will revert to my current dose and just keep my private arrangement. It's not ideal but I don't want to feel ill. He actually told me that the risks of being undermedicated were negligible!

Yup. He really is ignorant!

Its quite shocking really. I'm not meant to have a quality of life just so I can fit into his range!!!

That's the way they seem to think, yes. I don't understand why. Try asking him, see what he says.

I did try. That was when he told me that the risks of being undermedicated were negligible! I think some of these medics need to walk a mile in one of our shoes and stop looking at a PC!

From what I've heard, that doesn't make much difference. They still remain TSH obsessed and ignorant.

jgelliss profile image
jgelliss in reply to greygoose

Love your spirit greygoose. 👏👏👏👏

greygoose profile image
greygoose in reply to jgelliss

:D

SlowDragon profile image
SlowDragonAdministrator

Only ever change one thing at a time

Another option to consider

You could try splitting your levothyroxine, taking 100mcg at bedtime and 25mcg waking

After a few weeks/months literally try cutting full daily dose into 62.5mcg waking and 62.5mcg at bedtime

I have considered taking my t4 at night. Particularly now I take t3 at bedtime anyway. I have read a lot of people get a benefit from that. I'm going to have a think about what to do. I hate someone else being in control of my body!!

LAHs profile image
LAHs in reply to BiscuitBaby

Using what you have been prescribed, fiddle around with the dose on your own until you feel well. Pay for your own blood tests so that you know what your levels are when you feel ill and what the levels are when you feel well. Nevermind the dose the GP/Endo "tells" you to take because he obviously hasn't a clue what he is doing (to you!). We are all on our own. Just use what he is prescribing and (as usual) DIY. Of course, if when you feel well your blood tests are not within his (mythical) range then you will have a problem if he withdraws T3. You can always do two experiments, the one which makes you well (and that is for you) and the one which puts you in range, (that is for him) and you do that just a few days before he tests. Just put up with feeling ill for a short while and then revert back to the doses which make you well. I think your doc doesn't have a clue,, but at lease he prescribes T3, he doesn't know what he is doing with it but you must learn - it's tough and miserable but many of us here have gone through it and, as far as I can tell, none of us have died!

BiscuitBaby profile image
BiscuitBaby in reply to LAHs

HiThank you so much for your advice. That's more or less the plan I have come to. I don't know I can ever get tsh into range though. It's not been there for a long time on Levothyroxine!

LAHs profile image
LAHs in reply to BiscuitBaby

For what it is worth, my TSH has been below what their machines could detect (0.0001 whatever units) for about 12 years. No heart problems and no osteoporosis and I am REALLY old. Full disclosure however, I wore out my knee cartilage and the pain I experienced coincided with my first dose of Levo but a couple of "arthropods" I see have confirmed that most of their knee patients do not correlate with low TSH. My cartilage problem is only in my knees, not throughout all of my joints which it would be if related to low TSH.

BiscuitBaby profile image
BiscuitBaby in reply to LAHs

Hi LAHsThat's reassuring to know! I'm sorry you have bad knees though! I hope they are not too bad!! Maybe I need to take you to my next appointment as evidence! See what Dr makes of that! He'll likely tell you you are clearly hyper and your bad knees are definitely absolutely the result of being so!!!

LAHs profile image
LAHs in reply to BiscuitBaby

Yes, when I became stable and well my first (and ignorant Endo) told me that I was hyper! At that point I knew that I was on my own. I knew I was well and normal regardless of ~zero TSH, how dare she tell me that I was ill when I was finally, after two years of her nonsense, well. I have asked three "arthropods" if their knee cartilage lacking patients had low TSH and they all said, "No" - and believe me they do measure it. No correlation whatever.

Having been well and truly hyper believe me you would be feeling extremely ill and your doctor would know it.

I also became very hypo during my treatment and I felt pretty awful then too - just in a different way.

At one point I saw my GP and said I thought I might be needing an increase in my levo - she obviously didn’t want to step on my consultants toes so she prescribed amitryptiline which didn’t help and by the time I saw my consultant I’d stopped that. When I told the consultant what the GP had prescribed she rolled her eyes and increased my levo.

Next time I needed an increase between consultant appointments my GP gave me a little bit more levo - think the consultant had probably put that on my notes - my GP and my hospital file share.

My GPs comment was ‘We don’t want you to become hyper.’ I pointed out that I’d been hyper and I most definitely didn’t want to be like that ever again but I was still needing a touch more levo.

On the other hand these are the doctors who didn’t think to tell me that an overactive thyroid can help you on your way to osteoporosis - if only one of them had mentioned that I’d be a happy bunny.

Hi fruitandnutcaseI did try telling him that I didn't have any of the signs of being overmedicated but he just didn't want to get into a dialogue with me. I just want to be well! I'm sure it's not too much to ask! I am an awful lot better than I was, thanks to this forum! But I just think I could be a wee bit better! But I'm a middle aged woman so it's clearly expected that I should feel like crap!

Ah - I'm a middle aged woman so it's clearly expected that I should feel like crap! That ties in with my Three ages of Women theory.

1. You’re too young to have anything serious.

2. You’re middle aged, menopausal, neurotic and a hypochondriac.

3. You’re too old to bother about. You’ve got to expect some aches and pains at your age.

I was eventually diagnosed with Graves’ disease after being looked on as No 2 and believe it or not I was actually told ‘I was needing a holiday’. And more recently I had diagnosis No 3 when I was told by yet another doctor with x-ray eyes that my fractured sacrum ‘was probably a touch of osteoarthritis.’

Who ever heard of wanting you to feel better - up to a point? Which point did he have in mind I wonder? I also decided when I had Graves that there is no such thing as ‘fine tuning’ on the NHS - anywhere within the massive ‘range’ will be fine - even if you are feeling absolutely dreadful.

That's awful! But yes, your 3 stages of woman seems pretty accurate. You would think that the nhs being on its knees and all that would want you feel better so you don't waste time and money on unnecessary tests and appointments but that doesn't seem the case! I hope you are feeling OK now. A fractured sacrum must've been really painful!

But I'm a middle aged woman so it's clearly expected that I should feel like crap!

I get this feeling as well. Since diagnosis earlier this year is the first time that I've come across this feeling of being put into the bin and patronised. I knew it existed but hadn't experienced it. It makes no sense to me at all.

I agree PearlteapotUntil this diagnosis 3 years ago I genuinely didn't think that medics would just dismiss you on the basis of your age! The first gp I had told me that I was nearly 45 so I might just have to learn to live with it! That was after I told him I felt like my body was dying and I was sleeping 16 hours a day! It's really bad. You don't know how bad till it happens to you!

Hi

I often wonder if men, once they get to 45 are told that thinning hair, beer bellies, lack of libido and feeling knackered are just part of life's rich tapestry, getting older and now you're essentially past it. I'm thinking not. Do they get fobbed off with antidepressants as well?

No, they invented viagra to sell over the counter while women still have to beg for hrt to get some semblance of a life!!

PixieElv profile image
PixieElv in reply to BiscuitBaby

So true, I was told that I will never feel ‘normal’ again now I am over 45… by a male GP

You can change your Endo. Research Endos in your NHS trust and demand a referral. They will fight you all the way, but do not give up. After all, what is more determined and powerful than a middle aged woman 😊

Or go private if you can afford it. Thyroid UK has a list of really great Endos. It will change your life!

BiscuitBaby profile image
BiscuitBaby in reply to PixieElv

I already made a complaint to see endo anyway. The one who wrote to my gp initially was not this man. I think this one was diabetes. I don't think I'll see him in 3 months. It's just so terrible to be dismissed. I will give things a go and see what happens. He told me there were 22,000 prescription for t4 and only 100 for t3! As if that means I'm wrong. I just feel for the folk who are not able to fight for their health.

SlowDragon profile image
SlowDragonAdministrator in reply to BiscuitBaby

There’s approx 2 million people in U.K. on levothyroxine

Medics admit 10-20% don’t fully recover on levothyroxine alone …..so that’s 200,000-400,000 people (90% are female)

58,000 prescriptions for T3 on NHS in England in last year. Typically 6 prescriptions per person per year

openprescribing.net/analyse...

Was roughly double that number before price hike and numbers are increasing again now price has dropped

Perhaps double that number of private prescriptions and possibly same again perhaps self medicating without prescription

PixieElv profile image
PixieElv in reply to SlowDragon

Not to count those of us who only see an improvement on NDT (not Levo nor T3…)But what is the value of a decent quality life?

Its a hard struggle to get things right, for each 1. The Forum is, well soooo helpful, don’t give up, takes time!

I really feel for you in this situation. I'm not on T3 but my TSH is fully suppressed and my T4 way above the range (mt T3 is normal}. I have felt very well on a dose of 175 mcg daily. One GP I saw a few years ago insisted I reduce my levo dose. Even though I explained I feel ill if I reduce the dose, he just sat staring at figures on the screen instead of examining me! When I told him I feel well, h e said: 'Everyone feels well on a higher dose'.

I said: 'don't you want your patients to feel well?' In the end I walked out on him and changed my GP to someone who looked at my state of health more broadly and allowed me to keep on the dose which I have been on for years. I have been let down more than once by GPs.

BiscuitBaby profile image
BiscuitBaby in reply to fiftyone

He said that to me, that I only felt well because I was hyper. He had no interest in my symptoms. Didn't even want to hear about them. Kept telling me it was because I was hyper. I have no symptoms of overmedication whatsoever! When I asked about the pain in my thyroid he examined it told me he couldn't find a nodule so the pain was something else. I've never had a goiter. He pointed higher up in his throat and I said its not there its lower. He told me that I might have had some inflammation but pain is very rare! Wrong by his book again!

fiftyone profile image
fiftyone in reply to BiscuitBaby

is there perhaps another doctor you can change to in the practice? Or can you make an appointment with another doctor to get a second opinion? I have found that doctors do all have different approaches. Some doctors seem fixated on one ailment. Heard this before with diabetes. No matter what the health complaint, it all boils down to one thing. Are they just lazy?

fiftyone profile image
fiftyone in reply to fiftyone

or perhaps wait til there's a locum on duty. A locum may bring a totally different approach.

BiscuitBaby profile image
BiscuitBaby in reply to fiftyone

This was an endocrinologist not gp. I already changed my gp! I am hoping at Mt 3 month review I see another doctor. I will meet him halfway with my treatment plan but I'm not sacrificing the health that I have achieved so far. I don't know why it has to be so hard!! Hopefully long term they will hand it over to the gp and I can manage my dose there. That will take time though!

fiftyone profile image
fiftyone in reply to BiscuitBaby

it is such an uphill struggle sometimes but I'm glad you've got the strength not to buckle under the pressure.

BiscuitBaby profile image
BiscuitBaby in reply to fiftyone

I do have strength now but that is purely down to what I've found out on this forum! I feel for those haven't found this place!!

fiftyone profile image
fiftyone in reply to BiscuitBaby

well I wish you all the best.

BiscuitBaby profile image
BiscuitBaby in reply to fiftyone

Thank you!

Hi.

I haven't read through the other replies so this has probably already been said, but if you are taking T3, then your TSH will be suppressed. My endocrinologist told me this and is not in the slightest bit concerned that my TSH is 0.01. If you have been told to increase your T3, it seems likely to me that your TSH will become even lower.

I am sorry you are going through this, I hope you get it sorted.

Hi You might want to get your doctor to tell mine that is what happens. My private doctor wasn't concerned but this one is convinced I'm "hyper" with no discussion!

Oh the dreaded “your menopausal” and thats where all your problems are coming from … these people aren’t doctors they are monsters.

BiscuitBaby profile image
BiscuitBaby in reply to Batty1

I know. If its not menopause it'll be chronic fatigue or functional neurological disorder! Incidently I have a referral in place for that too!

Or you're stressed, depressed or have health anxiety. I have fibromyalgia and I kid you not pretty much anytime I've been to the doctors they blame it on that. Broken your femur, that'll be the fibromyalgia. Got a brain tumour? Nah it's the fibro.

Having suffered it for over 17 years I'm pretty sussed about how my fibro affects me, what's "normal". So if I'm concerned enough about a problem to contact a GP, usually something I'm keen to avoid most of the time, then I'm pretty sure it isn't bloody fibro. It's just lazy medicine and patronising to boot.

You are right. I just wonder how they would cope and get treated if one of them developed underactive thyroid!

I’m with the others on the T3 for the “over 50s”…….I’m not an aggressive person - unless someone hurts my family or tries to take away my T3 😡

I get my T3 via private endo too - he said I should be able to get it via my GP now - I declined as scared for the reason you are struggling now, didn’t want them to take it from me when they decided I’d had enough.

On the TSH level - mine has been extremely low since adding T3

It needed to be under range for me to function when on T4 only - some of us are like that and we get a lot of aggro because of that. How do they know that when our thyroid was working that our TSH wasn’t naturally below range?

Typical man - menopause/peri-menopause……blah blah blah - if in doubt blame her hormones

I hope you sort things and get back to feeling good again ☺️🧁

BiscuitBaby profile image
BiscuitBaby in reply to Lovecake

Thank you! I agree since adding t3 I was starting to feel normal again for the first time in years. Like you I never felt well until I was on a dose that put my tsh below range! This doctors theory was that I felt good because I was hyper! I feel like saying to Dr that if he's looking for evidence that t3 works then he need not look further than here! He doesn't want to see people well it would seem. Thank you for your reply. It's good to know that I am not the only one. The doctors would have you believe that no one else was like you and everyone else gets on fabulously with t4 alone!

Lovecake profile image
Lovecake in reply to BiscuitBaby

I’m definitely not over medicated (or hyper as your doc prefers). I sleep better, my heart rate is not high, I don’t have the jitters, I certainly don’t go to the loo too much and I don’t have spare energy to run around lots.I’m very thankful my GP doesn’t think like yours - as long as my results are not over the ref ranges she is ok and knows I will contact her/my private endo if I feel something is wrong.

It’s not perfect, but I am miles better than I was

BiscuitBaby profile image
BiscuitBaby in reply to Lovecake

Yeah. I told him I had resting heart rate of 60 dropping during the night to 54 sometimes. But everything I said it was because I was hyper. I tried also to use the phrase over medicated but he didn't even engage with that. I wonder how much reflective practice these doctors engage in? None I don't think or they wouldn't treat us the way they do!

Lovecake profile image
Lovecake in reply to BiscuitBaby

Sending a hug 🤗

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