How to deal with TSH obsessed doctors...? - Thyroid UK

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How to deal with TSH obsessed doctors...?

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Has anyone ever told a doctor to his or her face that you intended to stay on T3 or NDT even if it suppresses the TSH and the doctor is unhappy about that?

I am going to need to tell a doctor that, one way or the other.

For the past few months, I have been under the care of a neurologist after displaying some strange symptoms that doctors have been unable to diagnose so far.

This doctor has ordered a lot of tests, including TSH and FT4, and consulted with an endocrinologist who decided I was hyperthyroid (based on my TSH which is <0.01) and should be put on 100 mcg of T4 without delay. That is a completely arbitrary dose and, before switching to NDT seven years ago, I needed 200 mcg of T4 daily just to feel human...

Anyway, there is no way I am going back on T4 only. At first I thought I could do it long enough for my TSH to "normalise", but then I realised that may take a very long time...or not happen at all. Plus, I would feel terrible.

But how do you tell a TSH obsessed doctor that you intend to continue taking a drug s/he wants you off asap...? I don't want to appear confrontational or rude in any way but, after all, it's my body...

Before switching to NDT, I had a doctor who, even though he prescribed T4 only, wanted a suppressed TSH in patients with Hashimoto's as he said that tends to lower antibody levels. This means that I have had a suppressed TSH for the past 15 years and, so far, it has not killed me...

Any advice on this would be most appreciated as I am really worrying about how to deal with this...I am supposed to have new labs in a month, after being on 100 mcg of T4, so I am going to have to tell the doctor asap that I have no intention of switching to T4 only...

I realise it may sound ridiculous to worry about something like that, but I really have no idea how to get the message across without creating unnecessary tensions or conflict...

30 Replies
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I have considered sending my friend to do bloods for me to get doctors off of my back - only for TSH thought. Or stopping meds for a week to bring my TSH high.

If you won't do what they told you there are two possible scenarios:

1. They will understand, help you and support you....

2. You will feel full wrath of "Gods" - they'll stop your meds completely, they'll withdraw other related or non related treatment, brand you non compliant and trouble patient, discharge you from consultant care immediately

There are plenty of posts on here describing doctor being ZERO tolerant of people self medicating or going against doctors "advise" 're TSH

You have two possible outcomes I told above. I doubt you will see scenario no 1 from NHS Gods

Hidden
Hidden in reply to trelemorele

I'm not in the UK so no, I don't think so...

The thing is that officially, I am not self medicating as I am seeing a Hertoghe doctor in Belgium who prescribes Erfa. Instead, I order NDT from Thailand because it's both cheaper and more effective for me, but nobody needs to do that. Officially, I have a doctor who prescribes NDT for me, period.

But the other thing you mention is what worries me the most...that is, that the specialist will stop all other, completely unrelated, treatment...I am not sure if that is legal, but maybe it is...? After all, I assume a doctor can declare that continuing to treat a given patient would be against his or her conscience if the patient refuses to comply with doctor's orders, even if the doctor was never asked to interfere with thyroid treatment...???

I have also considered asking someone else to go to the lab for me, but I am not sure I know anyone who would agree to...after all, would it not be fraudulous? And what if you are required to show some ID...?

If the TSH would normalise rapidly after going off NDT, I would be willing to do it and suffer for a while only to go back on NDT once the doctor was satisfied. But, from what I understand, when you've had a suppressed TSH for years, as I have (ca 15 years), the TSH may not normalise for a very long time, or maybe not at all...I wonder if the pituitary gland, which has not had to produce any TSH to speak of in years, would all of a sudden come back to life if T3 was withdrawn...? Has anyone done this, after years on T3/NDT and, if so, did it work? How long did it take for your TSH to normalise?

I am trying to see what my options are here...

trelemorele
trelemorele in reply to Hidden

With regards to:

"I have (ca 15 years), the TSH may not normalise for a very long time, or maybe not at all...I wonder if the pituitary gland, which has not had to produce any TSH to speak of in years, would all of a sudden come back to life if T3 was withdrawn...? Has anyone done this, after years on T3/NDT and, if so, did it work? How long did it take for your TSH to normalise?"

I'm off t4 for the last three weeks. I'm on t3 only now and will have my bloods done this Friday. Bear with me till next week. I will post my bloods on here as I'm v. curious myself what my TSH will look like then.

I'm going to stop t3 at least 24h or more prior to blood test.

Hidden
Hidden in reply to trelemorele

PS. In this context, I wonder: if the goal is to try to normalise the TSH, would it be enough to go off NDT and back on thyroxine (I was thinking about the dose that used to keep my TSH around 2 years ago: 150 mcg daily), or would it be better to be off meds altogether for that week...? After all, T4 has a long half-life, so I guess it would be possible...I would probably not feel great, but it could at least be tolerable if a week was all that was needed...after that, I think I'd crash.

Clutter
Clutter in reply to Hidden

Anna69,

Do you have a thyroid?

Hidden
Hidden in reply to Clutter

Yes.

Clutter
Clutter in reply to Hidden

Anna69,

I think it's very unlikely a week off meds will be sufficient for TSH to rise. If your TSH has been suppressed for years the set point will have changed. I don't understand why anyone would manipulate their thyroid results to please their doctor. Change your doctor if necessary but don't make yourself ill to target a doctor's TSH goal.

You may think a week or two off meds is tolerable but the hypothyroid symptoms which accrue won't resolve as soon as you resume the NDT or T4 as it will take a few weeks for T4 and T3 to rise. Having been off meds for 4 weeks it took almost six months for symptoms of dry skin, shedding hair and dry shedding skin to resolve.

Clutter
Clutter in reply to trelemorele

Trelemorele,

You would still have half the dose in your body after a week off meds so stopping meds for a week may not be long enough to raise TSH.

trelemorele
trelemorele in reply to Clutter

Hi Clutter

I do understand that. But at the same time half a dose left over in my system will not be enough for my body to cope as nature intended so in effect should influence TSH to raise from non detectable to within lab ranges at least. Which in effect would make medics happy.

I haven't tried it myself. It's a little too late now as I'm.on T3 only now. But I'll see what my Friday results bring. If they test t4 as well (I did ask) I will get some insight how much t4 has left my body in this time.

Hidden
Hidden in reply to trelemorele

I saw scenario 1 from my Endo / Ocologist. I told him that I was buying my own NDT, dosing until I felt well and couldn't give a monkeys about my TSH being suppressed, (He's got a bit of a 'hang up' about TSH). I said that I hoped that he wouldn't discharge me, but if he did so be it. I've had a total TT for Thyroid cancer so need a Thyroblobulin marker test every twelve months.

He told me it was a free country and that I had his approval, that he wouldn't discharge me and would continue my annual Thyroglobulin test (I've had a TT for thyroid cancer)

I calculated my equivalent dose of Thyroid S (2 grains). Been on this for 5 months. Bloods 'spot on' in 'thyroid speak' (except TSH) I've just added 5 mcg T3. Didn't want to increase NDT by half a grain as I don't want to increase FT4.

Ths will probably take me just over FT3 range and I-could-not-care-less.

We must take ownership of our own bodies.

Most endos decisions are based on economics. My endo had no problem with my TSH being suppressed on T3 only. It was when the threats of non availability became apparent that he switched me to the poison that is T4 - "because my TSH was too low". This was 2 years after he'd told me that I wasn't converting on T4!!!

Most of them are 'number jugglers' and I'm afraid we have one or two admins on this site who have the same attitude.

Be your own advocate.

trelemorele
trelemorele in reply to Hidden

More than two I'd say and I also spotted one medic with some bizarre replies! If you see it, you'll know who I'm talking 😉

Aha so I assumed your in the UK and on NHS.

I don't know the rules for bloods and id in Belgium.

I admit when I did my bloods privately in Germany I had to register with and then show my Id. However when I did bloods privately no-one but me cared about results so I didn't have to skew it.

The only time I'd have to skew my blood test would be for national health system - as they're the one I need off of me - and they don't ask for id only DOB.

If you carry on privately I wouldn't worry fiddling your bloods. Never had private doctor tell me off. They'd gave me advise and also suggested more help together with any scripts I asked for but never told me off or threaten with sth and my TSH is non detectable last 10 years.

Hidden
Hidden in reply to trelemorele

This specialist is working in the university hospital...

trelemorele
trelemorele in reply to Hidden

Correct me if I'm wrong. I may have misunderstood you.

So you're under national health who prescribe you Levo but you don't take it and instead buy NDT and take this solely. Right?

If that's the case what do you care what hospital Endo thinks or do?

I'm in the same boat. I have Levo prescribed but take privately obtained T3.

I'll do my bloods next Friday. If TSH will be low and my GP tells me he reduces my prescription dose- fine. I don't need it anyway. I will keep collecting Levo from the pharmacy and stock up but won't take.

But I'm not going to tell my GP I'm on T3 only as this will cause problems - been there got the t-shirt.

They'll live in sweat ignorance for the next year. And next year I'll figure out something else.

Hidden
Hidden in reply to trelemorele

No, not quite, sorry for not being clear.

I was on levo for years after being diagnosed with Hashimoto's in late 2000. Never did well on it, kept gaining weight, felt sluggish and looked bloated.

Seven years ago, I went to see a Hertoghe doctor in Belgium to get NDT (and other hormones). However, both Armour nor Erfa (the only brands prescribed in Belgium) are problematic, not to mention expensive, which is why I have been ordering NDT from Thailand for the past few years. I don't take anything else for my thyroid condition.

However, I only see this doctor once a year. First of all, Hertoghe doctors charge a fortune so you would not go there any more often than necessary. Secondly, and maybe even more importantly, they don't offer consults on other things than hormone/anti-aging therapy...meaning you don't have a Hertoghe doctor as your family doctor and go there to have your blood pressure checked.

The hospital endo is someone I've only seen once, and she was called in after the neurologist saw my TSH...I've never had any desire to have my thyroid condition treated by more than one doctor (the Hertoghe doctor...even though I'm technically self medicating, at least she cares more about my FT3 levels than anything else), but because another doctor ordered thyroid tests I now have to find a way to deal with it.

trelemorele
trelemorele in reply to Hidden

So who are you trying to fool with the bloods again?

Private, expensive Hertoghe doctor or NH Endo/doctor?

If I didn't agree with private doctor on treatment I would never go back there.

Just because he/she is expensive doesn't mean they're good.

I left mid appointment with private doctor (apparently highly regarded and very expensive) just because she was arrogant and didn't listen to me.

But I also wouldn't try to fool private doctor with my bloods either. In the end he/she has nothing to do with my health treatment if I chose to.

I pay, I expect you to work with me. If not I'll take my money somewhere else.

Clutter
Clutter in reply to trelemorele

Telemorelle,

Your GP will know you are taking T3 only because FT4 will be below range. ThyCa patients prepping for RAI come off Levothyroxine for 4 weeks and are prescribed Liothyronine for 2 of those weeks then no meds for 2 weeks. The aim is for TSH to rise >30 so any thyroid cells take up the RAI.

trelemorele
trelemorele in reply to Clutter

I'll report back next week. That's getting more interesting by the minute lol

Well, the other scenario she'll think I'm on too low dosage of Levo. They don't test t3 so she won't have that reference.

Going by above thycan procedure: if after 4 weeks TSH goes up to >30, two weeks would be half that, one week off Levo would make your TSH to budge and show up at least within lab ranges.

Clutter
Clutter in reply to trelemorele

Trelemorele,

Not necessarily. That regime is for people who have no thyroid function whatsoever.

trelemorele
trelemorele in reply to Clutter

Aha that's a valid point.

I always assumed I have ZERO thyroid functions going by my very 1st blood tests. But that may not necessarily be true.

Well, we'll see on Friday how it will all pan out with my blood tests and if I'll have the talk with my GP or be spared till next year.

Well, I'm not in the UK, either, and haven't seen a UK doctor since my last pregnancy 44 years ago! But, French doctors can be just as TSH obsessed, going on about the 'dangers' of low TSH. My last doctor, three years ago, started panicking when my TSH hit 0.44, although my FT3 was still under mid-range. I was on T3 only. So, I tried explaining it all to him about the feed-back link, and TSH having nothing to do with bones and hearts, and the FT3 was more important, blah, blah, blah, and he just poo-pooed everything I said, but all he could come up with in response was that he'd been to med school 40 years ago, and I hadn't! lol

So, in the end, I just kept saying 'no', every time he tried to say I should reduce my dose. He'd say 'but...', I'd say 'no'. 'But...' 'No.' And this went on for quite a while, until he became enfuriated and shouted at me 'OK! Have it your way!' And gave me an increase in dose! lol I never managed to work out his logic, but I didn't care, I'd got what I wanted. Not saying this will work with every doctor, but you have got to show that you're not intimidated by them. They are not god, after all. They are there to advise you, not dictate to you. It's time someone reminded them of that!

Hidden
Hidden in reply to greygoose

Greygoose,

I could not agree more! I hate the idea of being bullied into going off treatment that works well only to please a doctor.

Can I ask how much T3 you were taking when your TSH was 0.44? That is still in range, although low in range...I cannot even take as little as 2.25 mcg of T3 (a quarter grain of NDT) without my TSH ending up 0.01...

So, I take it you are not self medicating, but that your doctor prescribes T3 for you although he is unhappy with your TSH...?

shaws
shawsAdministrator

Maybe run off a copy of the following and give it to her. You can say that Thyroiduk.org.uk are the NHS Choices for information and help. on Healthunlocked:-

healthunlocked.com/thyroidu...

Hidden
Hidden in reply to shaws

Thank you so much! A reference in this text led me to another interesting article:

thyroidscience.com/hypothes...

The last time my endo tried to get on my case for suppressed TSH, I put it back on him. I told him that my understanding was that suppression was inevitable with taking T3, but I'd love to find a way to deal with it. (To be fair, I would!). Were there methods he could recommend to help my TSH while taking NDT? He's not someone with much knowledge, and instead of addressing that lack of knowledge, he just shut up :)

Anna69,

My endo would like my TSH less suppressed. It's been <0.01 since 2012 and she would be happier if it was 0.05. I had 3 Levothyroxine dose reductions over 12 or 13 months which didn't budge up TSH but FT4 and FT3 dropped considerably. I felt less well after the 3rd and when endo decided to reduce T3 dose I refused. She is concerned about osteoporosis and atrial fibrillation. I told her I would rather feel well today even if it increased my risks of adverse health events in 10-20 years. She said it may not take that long! Nevertheless, I said that if she reduced my dose I would buy online and top up as required so she has left my dose as is. We have the conversation at annual reviews.

I wonder whether it makes the slightest difference whether TSH is suppressed at <0.01 or at 0.05?

Hidden
Hidden in reply to Clutter

I know what you mean...the doctor I used to see, who wanted a suppressed TSH in patients with Hashi's using T4 only, said my TSH should ideally be between 0.06-0.1, because a TSH <0.05 would be dangerous...I have never understood why a TSH of 0.06 would be perfectly fine, while a TSH below 0.05 would be dangerous...

The risk of atrial fibrillation and osteoporosis, does it not exist only if your TSH is suppressed because you have too much thyroid hormone circulating in your body, either produced by your own gland or drug induced? In many people taking T3 or NDT, their suppressed TSH seems to mean simply they are adequately treated and therefore do not need to produce any thyroid hormone on their own, hence the suppressed TSH...

Clutter
Clutter in reply to Hidden

Anna69,

Jury seems to be out on whether exogenous thyroid hormone suppressing TSH is dangerous or not. My endo, and apparently most members' endos, seem to think it is overmedication and therefore dangerous.

When my GP started about my suppressed TSH, I just said "Oh Yes, well it would be, NDT is block and replace!"

Doc did not know enough to correct me and so thought it was true and backed down! :)

shaws
shawsAdministrator in reply to serenfach

Brilliant response :)

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