TSH suppressed - Doctor wanted to lower my dose of T4

[MissBfirstDanBlackBelt]

Wow, that went well - not!

I've been taking a combo of T4 and T3 for some years now and feel mighty well but I had to change my doctor recently after the previous one retired. Following yet another blood test, that gave a tsh reading at 0.014 she reduced my dose by 25mcg (without talking it through with me first, you understand). Anyway to cut a long story short, I've just had the dreaded conversation with her where I pointed out that my tsh has always been suppressed, that's how it needs to be for me to be symptom free. That a suppressed tsh would only be a concern if I were hyper and that because I'm taking replacement hormones the the link between the pituitary and thyroid is broken. She even said that ideally she would like to bring my tsh back up to within the reference range and above 1 !!!!!! If that happened I dread to think how unwell I'd be.

Because I know a little bit about my condition and had the balls to challenge her over her decision, she got really shirty with me, talked over me and said 'I do know about tsh, I am a doctor you know'. Now I have to say in my defence I anticipated hostility and so made sure I was polite and non confrontational. I even suggested they test my free levels if that would make her happier - she said she'd asked but the lab had refused. I said well surely I shouldn't be penalised because the lab won't comply with your request? It was at that point she lost it completely lol

Anyway the upshot was that she has restored my dose back to where it should be. But I strongly suspect I've made an enemy out of her. Ooops

[shaws]

Enemy or not - it's your life and your body. It is only hormones after all not some stuff you might by off a street trader.

You did very well indeed. Maybe she'd like to read the following so that she will realise she didn't put you in danger - as they believe 'old wives tales' about suppressed TSH. Why would patients who have had thyroid cancer be given suppression dose of levo or any thyroid hormones?

thyroiduk.org.uk/tuk/thyroi...

You have probably studied more about the thyroid gland than many doctors or endocrinologists.

[shaws]

Also this is part of an article by the ex President of the BTA. Maybe give her a copy of the article which you can get from [e-mail]

6 What is the correct dose of thyroxine and is there any rationale for adding in tri-iodothyronine?

The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range – 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This ‘exogenous subclinical hyperthyroidism’ is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).

Even while taking the slightly higher dose of levothyroxine a handful of patients continue to complain that a sense of wellbeing has not been restored. A trial of levothyroxine and tri-iodothyronine is not unreasonable. The dose of levothyroxine should be reduced by 50µg daily and tri iodothyronine in a dose of 10µg (half a tablet) daily added.

While taking both hormones it is important serum TSH is normal and not suppressed.

(ignore his last sentence which is to be expected by many Endos)

[MissBfirstDanBlackBelt in reply to shaws]

Thanks Shaws - its probably relevant to say that my current dose is 150T4 and 60T3. Between you and me (and the rest of the community lol), I actually would be quite open to reducing the T4 dose right down as low as possible until I started getting symptoms again.

I feel that its the T3, and T3 alone that is keeping me well. Had she been nicer today, I might have suggested that we experiment and see what happens. The trouble is, I'm the kind of person who, when someone tries to take control of me, I fight back to prove a point. I'd rather cut my nose off to spite my face than give in.

Own worst enemy springs to mind

[shaws in reply to MissBfirstDanBlackBelt]

Some people do need large doses. If you're well why mess about by adjusting doses because if you want to go back to the original dose it might not work the exact same way.

Your doctor was still wrong in assuming that to get the TSH back up to around 1 is the right thing to do.

[MissBfirstDanBlackBelt in reply to shaws]

Its human nature I guess to feel the need to be seen as taking positive action - she's a doctor, she needs to apply her skills even where they're not wanted or required

Cynical Me !!

[jimh111]

Perhaps she should remind the lab that she is a doctor. Well done for keeping cool. I think it's important to keep a friendly but assertive attitude and use lot of tact. I know that's a bit unfair on the patient but it's the best way forward.

The article by the ex President of the BTA is a useful tool if poor science. "as long as serum T3 is unequivocally normal" may be too much for some patients and too little for others. It's pseudo science. "The dose of levothyroxine should be reduced by 50µg daily and tri iodothyronine in a dose of 10µg (half a tablet) daily added." The author is confusing levels of fT3 and fT4 in the blood (the ratio is closer to 4:1) with the ratio required if you take hormone tablets (3:1). So 50 µg L-T4 is roughly equivalent to 15 µg L-T3.

[MissBfirstDanBlackBelt in reply to jimh111]

Thanks Jim - its the fact that patients get caught up in the politics between GPs, Labs and pharma companies that p***** me off

Also, the tendency for GPs to treat a set of lab results rather than treat the patient the see before them, when it comes to thyroid v mediation issues.

[MissBfirstDanBlackBelt in reply to jimh111]

Jim, I'm curious why the lab would refuse to test frees. Is it because it might expose the tsh test as flawed? Are the labs getting a back-hander from the pharma companies that are making a mint out of the tsh test? Do you happen to know?

[jimh111 in reply to MissBfirstDanBlackBelt]

Guidelines british-thyroid-association... . The labs use it as an excuse to save money.

[SeasideSusie Remembering]

Oh my, I could have written your post! However I am on T4 only.

My old GP (now retired early) was fine with me having a suppressed TSH and top of range or slightly over FT4. When FT3 was measured by lab (happened occasionally when FT4 went into about 28-30) it was always in range and not even at the top.

New GP is scare mongering about being over treated as my TSH is suppressed and the risk of osteoporosis and heart problems, particularly as there is a poor heart history in my family. Despite me being polite and respectful, discussion is not an option with her though, I tried but she just won't answer anything I bring up so we sit there in silence. What makes it worse is that she was going by TFTs which were 15 months old at the time and didn't suggest repeating them.

I have seen her since for other things but the subject of my thyroid hasn't come up again and I'm happy with that for the moment. I am self testing and trying to sort out what is right for me. Vits and mins are being addressed, adrenals seem to be OK, blood TFTs are still showing the same so I'm waiting to see what a urine thyroid test shows. T3 is on it's way in case there is a need to trial it.

I really don't know where this will go with my GP. I'm not particularly assertive and my poor brain just can't cope. I can't remember the counter "arguments" and I get totally flumoxed when it gets too technical, but even if I could put a good argument forward it would be rejected and ignored. I can't even change surgery as there isn't another one within 10 miles, public transport is poor and I don't have a car so couldn't get there anyway.

I'm pleased to hear that you had your dose restored to where you know it's best for you.

[MissBfirstDanBlackBelt in reply to SeasideSusie]

Agh thats rough for you. I remember what it was like to have brain fog - its just awful when you struggle on without adequate treatment. I too find it hard to hold my own when it comes to counter arguments. My default was to remind her that my TSH has always been suppressed and that some people need it that way in order to remain symptom free. Anything more technical and I'd probably write to her.

By the way - why does it seem that its the female GPs that are the most difficult? They better hope they never develop Hypothyroidism lol (not that its exclusively a female thing I know)

[MissBfirstDanBlackBelt]

It would be interesting to see what people think about only taking T3 or a low dose of T4 and a replacement dose of T3 (40-60mcg). Is anyone in this situation or are there any articles about it?

If T4 is just a storage mechanism for T3, the active hormone; if one is not converting T4 to T3 anyway, what's the point in taking T4 in the first place?

I'd welcome your views on this.

Thanks in advance

[Naomi8 in reply to MissBfirstDanBlackBelt]

This is a very pertinent thread for me.My GP with endo's direction is allowing me to take 40mcgs T3 with 75mcgs T4.Started the combo in May & huge improvements all round.GP doesn't know,but am now on 50mcgs T3 only.Been T4-free for 3 months,& if necessary will supplement with privately bought T3 when my stocks start to run low.Or I could add some T4 back in & see how I feel.I have also wondered about making T3 my main replacement & just adding a small amount of T4.Have not come across any posts of anyone on this protocol.Dr Lowe & Paul Robinson say we do not need T4.Tiredthyroid say the science backs up the need for T4 or risk dementia!

I have just had my 1st blood tests since changing to T3 & will post my results on TUK next week.My worry is the threat of the GP reacting to a highly suppressed TSH.Another reason why I may end up having to buy my own.

Its a bizarre situation to feel in charge of one's health through feeling better,thanks to TUK & yet fearing the threat of that being taken away by ignorance & financial constraint.

[Stourie in reply to MissBfirstDanBlackBelt]

Hi, I take t3 only and usually 80mcg at bedtime but every few weeks I up it to 100mcg for a couple of days and am good but not 100%. I reckon about 85% but feel not too bad at all.

[Glynisrose]

NEVER let a doctor reduce your meds based on blood tests alone it is wrong and stupid. If you have to challenge them so be it, its your life and your health not theirs.

[MissBfirstDanBlackBelt in reply to Glynisrose]

Glynisrose, I have two issues with the way in which this doctor handled the situation. Firstly, I believe that she should have handled the doctor/patient relationship much more skilfully and second, you are correct that she responded to a set of lab results without considering the patient.

In the first instance, when confronted with a patient who was questioning her decision and the rationale behind it in a polite and considered manner, she really should not have lost her cool in the way she did.

Secondly, I think its wrong for any doctor to make decisions about a patient without consultation with that patient. That this doctor did so, really worries me. Is a consultative relationship based on trust and respect not one of the pillars of good GP practice? If not it should be.

[Karen1963]

Awesome - I too have really low TSH and to try to see if I could get a TSH reading I lowered the dose on docs recommendation after 6 weeks my FT3 and FT4 tanked and while my TSH rose to almost within range I gained 10 lbs was mentally unstable everything aches and I became seriously depressed. I told the doctor no way did the decrease work for me - and my dose was increased- never again will I lower the dose!! Good for you for not experimenting!! My TSH link is definitely broken