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Thyroid UK
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Do I tell my Endo I’m self medicating with NDT?

I was so tired of taking levothyroxine only that I’m self medicating with ndt. I’m furious that my previous Endo took my T3 away from me 5 years ago which is why I’m self medicating. Is honesty the best policy with nhs endocrinologists and self medicating?? Is it a good idea to say, Yes, I’m bypassing your suggestions?

My T3 levels have always been abysmally low and even when I was taking liothyronine, it wasn’t enough because I had only just gotten a prescription for it from a dr in the US, then we moved to the UK and my T3 sweetspot wasn’t established yet.

With my ndt, I’m still not on optimal levels because I just started it 6 weeks ago but I’m certain I’ll get there. But what should I do? My appointment is tomorrow

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Of course you must tell him, don't you expect honesty and trust from him ? isn't he entitled to the same from you ? If you are self treating why are you bothering to see him ? he will be treating you assuming you are on Levo so isn't that a waste of his and your time plus a waste of an appt someone else could have.

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You’re being naive in my opinion. We might expect honesty and want to trust that they will seriously want to try all the options to get us well, but in reality not everyone gets such an open-minded endo who REALLY understands the thyroid. The reality is often getting stuck with someone who can’t get their nose far enough away from the piece of paper that has your TSH result to look at you and establish honesty and respect for you as a person. 🤸🏿‍♀️🥛

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I'm self medicating too though doctor doesn't trust what i'm doing. I've been doing it for over a year now. Never felt better.

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I think that’s a tad harsh. Wasting an apt? Everyone has the right to be seen. Sadly with nhs endos or GPs you rarely get the outcome you want.

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How rude, I've had both hyper and hypo for nearly 50 years, don't tell me I know nothing about it ! You asked a question so you can't complain if you don't like the answers.

I will not respond further to rude unnecessary comments.

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bantam12

Sorry

These rude and unhelpful replies have been removed

Not at all in the spirit of this supportive forum

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Thank you

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I think Bantam12 has an excellent point and it’s the “right” thing to do but for me personally, I wouldn’t say a word. I have been wronged too many times by doctors that I only trust myself and the results that my body gives me. But, I think it swings in whichever direction fits you best. Are you an -honesty is the most important- type of person or are you more rogue like a lot of us? It’s really your decision.

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ROGUE!!! 😆😆😆

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I certainly would not tell the endo they wont know what your on and telling an NHS endo will only backfire

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Thank you, I’m going to keep it to myself after all.

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Just be very sure to still have all tests very early morning

Fasting drink only water

Never never take your NDT in previous 24 hours

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If you were getting T3 on NHS and prescription was stopped I would DEFINITELY tell them that you are taking NDT and why

Especially if you would prefer to be prescribed T3 again

Damning report by The Patients Association on NHS abandonment of thyroid patients who need T3 in this post

healthunlocked.com/thyroidu...

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Thank you for this report. I’m going to take a print out with me to the appointment!!

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New NHS England Liothyronine guidelines November 2018

Note that it says test should be in morning BEFORE taking Levothyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Have you considered DIO2 gene test? Common genetic variation

Medically recognised DNA testing including compulsory counselling

thyroiduk.org.uk/tuk/testin...

If you test positive it Can help in argument to get T3 prescribed

Wider DNA testing, for "educational purposes " as doesn't include compulsory counselling

bluehorizonmedicals.co.uk/t...

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Yes I haven’t tested for that gene test privately but I’ll bring it up because my T3 levels are always at or just barely above the bottom reference range number. Unfortunately many nhs doctors only see the criteria that it met the range but not that it’s at the bottom. Grrr! Again , 🙏🏼🙏🏼🙏🏼 Thank you for the fantastic resources to show my Endo as evidence! I feel very prepared now!

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One endocrinologist in Kent is offering DIO2 gene test on NHS and prescribing T3 if test positive

Useful data on prescribing rates in England

Can search by different medication and CCG and over time ....see historic prescribing rates

Eg Liothyronine

openprescribing.net/analyse...

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Is he the only Endo that openly advocates and recognises DIO2? He deserves a shrine!

I had the most frustrating appointment yesterday with an endo, who looked utterly blank when I mentioned I am homozygous for the polymorphism. I said something like surely you are aware of the implications and know the research behind it? Followed by an admission that they didn't know anything. The entire appointment was painful, as it is obvious symptoms are unimportant and the numbers in the blood test are all that matter, which would of course suggest I'm a picture of health and whatever is troubling me is obviously not the thyroid... GRRRRR!!!!

How can we trust so called specialists who obviously know less than we as patients do about the subject?

Self-medication seems utterly justified given all our collective such experiences!

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Was this an endocrinologist from the Thyroid Uk recommended list ?

If so, perhaps they need removing from list

There are UK endocrinologist who do know and understand the implications of DIO2 gene

Where roughly in UK are you?

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I sympathise... I started self medicating when I was fed up of battling doctors to get what I need and being treated like a hypochondriac. I realised my UK brand T4 was giving me awful side effects so I decided to source some synthroid instead online without prescription. It worked! :) This led to me self treating because I Had to buy my own meds so why not research my dose and take it into my own hands and give up on battling the doctors?

I did this a couple of years ago I think it was now. I stopped bothering with my doctor. I hadn't been referred to an endocrinologist, just was with a gp.

I dread the day I might need to go back to the GP or worse still a hospital for something and I end up with my thyroid tested! I do all my testing myself on Blue Horizon and stay on top of it as best I can. I'm trying to be responsible but detaching from the doctors route as they don't seem to know what they're doing and I've spent my whole life being snubbed for what I knew was wrong. I'm not going to let them undermedicate me too and give me substandard T4 that makes me sicker! So ... I self medicate and hope to goodness I don't have to have that dreaded conversation with the GP... Sorry to go on about my story, I just thought it might help to know you're not alone.

I think only you can decide whether to chance your endo might be understanding and supportive of your decision to self medicate.

If you go to see him/her then you'll likely have to say about the NDT... Otherwise they'll see your next test results and not be able to understand what's happening. Personally I think your choice is to either go and talk through your decision (but be prepared for him to look aghast and tell you off, sigh...) Which could lead to you searching for a more open-minded endo. Or just cancel the appointment and go your own way anyway and do private testing. But still this isn't a great route either, always living in fear of being "found out" lol and challenged when you may not feel well enough to go through that battle...

Hugs for your situation.

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I empathise with your experience and am committed to self testing regularly. It’s so ridiculous how much these doctors ignore our symptoms and leave us with no choice but to self prescribe. I also will be keeping my ndt to myself and see if I can phase out of the consultant appointments.

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It's a difficult one, I personally don't like lying. I have no thyroid and because of all the stresses that occurs when visiting the GP or Endos I decided over two years ago never to visit one again. I have been self medicating for three years now and take one or two private blood tests per year. Good luck with your appointment.

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I’d suss out their attitude to T3 before telling them anything. You can say you want to go back on it as you feel rubbish on T4 only - see what the reaction is. If negative go your own way. I’ve been On NDT for three years it made me feel loads better than on T4 and I simply never bother the doctor about thyroid matters they never ask me to do blood tests so I don’t. I think if I feel fine I am fine but some would disapprove of my behaviour. All I can say I’s it is my life and I intend to live it to the full after decades of neglect on the NHS. They did save me eventually and my Endo was fine but very conventional. You are just in their radar for a few minutes but in your own all the time. I know who is a better judge of ones health!

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Thank you. I’m going to ask for t3 again but not mention the ndt and see how it goes. Otherwise, I’m going to go private.

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If this endo is no good

Get the list of recommended thyroid specialists from Thyroid Uk.

please email Dionne at

tukadmin@thyroiduk.org

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You could ask thyroid uk for their list of Endos who are supposed to be good and see if yours is on there. Your blood test will be skewed cos of the NDT you could leave off it for a few days beforehand to reduce the T3 effect but not sure if it would give a result nearer to T4 monotherapy plus there is the suffering to consider

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Thank you, I have the list. Sadly my Endo is not on there. I keep going back and forth to either paying lots of money to see a private Endo or just continue to self source and regularly test. I’m leaning towards the latter.

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Private isn't always better... It's about whether they are open minded and accepting and treat you right. You can find that in little gems, like gold dust lol. They may be NHS or private. . .

Money doesn't always pay for solutions.

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May be yours will be ok it could be no one has seen them to give an opinion - anyway lots of helpful and conflicting advice to consider here 🤪 fingers crossed for you to get the T3 you need on the NHS 😉

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Thanks! I'm going to feel this doctor out before I consider mentioning NDT, but will discuss wanting T3 again. It's the first time I'm seeing him but his colleague, my old Endo, was the most dismissive dr ever. He kept having me do sleep studies/sleep apnea and any other tests so he could try to blame my fatigue and other symptoms on anything BUT my thyroid. Everything else was fine! The former president of the British Thyroid Association used to work the same NHS hospital department and seemed much more flexible. I only got to see him once then he went back to private only but hoping this new Endo at least is more accommodating than my old one.

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🤔 I’ve had the same thoughts. Long story short, I was referred to an NHS Endo in Nov2018, finally got the appointment in Feb 2019, he took notes, sounded sympathetic but later I got his follow up letter that said I’m on optimal dose of Levo will follow up in May. In the meantime I got the DIO2 test which suggested I don’t convert aswell as I could. I sent that to him and so his response is to send me to a geneticist (st George’s in London) that refferal will take up to 4mths. I have since seen his refferal letter on line through ‘patience access’ and his letter basically says ‘what do you think of this test (DIO2) cause I don’t know what to do with this lady and we don’t offer combination therapy’

So in the meantime, I can’t raise a family with these symptoms so I went private and I’ll be adding T3 next week. And here I am, same position as you, do I say? Don’t I?

I think I probably will say bevause I suspect I’ll be very well by Mays appointment and so I’ll be his living proof that adding T3 works.

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That’s fantastic you have the gene test done as proof!! I should’ve done that and should arrange to do so too. I’m glad you sourced your T3 and will prove those nhs doctors wrong!! I hope you feel much better soon.

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Thank you c115. I wish it were as cut and dry as ‘proof’ the problem with the DIO2 test is that many people could have a faulty gene and be fine, not affected but I suspect that many of ‘those people’ do not have Hashimotos.

Irregardless the test is not really recognised or understood. For me my private endo wasn’t particulalry interested in it, he had looked at my history of blood tests before I arrived and had my prescription of T3 waiting for me. He said the numbers don’t lie, I simply don’t convert very well (my GP said I was symptomatic becUse I wasn’t taking my medications properly)

So really all that’s needed is to find someone who understands their job! 😩

Big hugs to you!! 🤗🤗 It’s really tough to get someone to listen and believe!

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Well, I am homozygous and presumably "plain" hypo, as my antibodies have always been low. So it is not just an issue for Hashis' sufferers, I would think all hypos, regardless of the root cause, are vulnerable to the shortcomings of monotherapy and / or the effects of the expressions of our genes.

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(This is for original post as well). Perhaps wait until your self dosing has put you back to an optimal or near-optimal state; when endo says “See? You’re doing fine on my crummy T4,” you can reply, “No, actually...” I would keep a careful chart or spreadsheet showing your meds and symptoms and test results. Docs seem more responsive to charts than to any number of words.

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Yes that’s good advice and will work for me as I have kept a good diary and as I said because I had a good history of TSH/FT4/FT3 results dating back to 2014 my Private Endocrinologist was able to see at a glance what my problem was.

My NHS Endo appointment is not until 7th May so I’ll have had a good 4wks on combination therapy so all being well ie we get the ratio right, I should be able to show that I am much improved 😀

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A spreadsheet with clear results over time.... can work wonders

Endo and GP astonished to see TPO antibodies dropping at each test after going gluten free

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Hi

It’s a difficult call. I was taken off my t3 by my doctor even though I had a private endo and the surgery had supplied my t3 for 17 years.

I am too on ndt and feel better. My surgery know I source t3 and I’ve left it at that so I get my free prescriptions.

If you see the same person who took the t3 off you i verymuch doubt you’ll get them back. Most nhs endos and GPs have been reprogrammed to t4 only. A suppressed tsh nearly produces a scream!

I’d agree and see how the initial discussion goes. It rather depends upon that and if you’ve other meds that you could end up paying for.

I suspect you’ll be just as you are buying your own ndt.

I recently went with a friend, for moral support, to a private endo in her area( well 200 miles away). All v nice and totally agreed with what I said. Still no t3. Buy your own and I’ll monitor it? So that was a waste of two train journeys and a consultation fee.

If they see decent bloods tests they may think Levo is better than it really is. But being an optimist I’d ask and sit back. Only you can gauge their reaction.

If it’s a no and they have no great blood tests personally I’d say nothing. You’ll be discharged and your gp updated. I can’t see a benefit of that.

Good luck tho.

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Mmmmm that is an interesting dilemma. I think it's sort of catch 22. If you say you're on NDT the endo may ask you to stop or may say they can't be responsible for you. If you don't then your bloods will show you as low TSH so the endo won't do anything anyway. I'd only go and discuss the NDT if I thought I'd get a supportive and clinically helpful response, otherwise I wouldn't know why I was going or what more they could do. I might discuss the NDT if I was hoping to get T3 and wanted the endo to know I'd been forced to self medicate by NHS restrictions but don't really know.....

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Now not going to mention ndt but will ask for T3 again.

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If they do blood tests, or you have existing blood tests from on NDT, it will show low TSH and good FT3....so if you don't admit to taking NDT that would shoot your argument down

If you are only taking results from before starting NDT and these show low FT3....then you can keep quiet about starting on NDT

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Anyone know how I can get Armour thyroid without a script? I have naturethroid but it doesn’t work for me and my dr just retired.

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I’m not a troll, I’m from Wichita ks- I currently am only on state insurance and they only allow Levothyroxine and all their doctors will only write for Levothyroxine. My old dr retired 2 months ago and he was the one that wrote me a script for Armour, natureyhroid and WP Thyroid. Currently I can’t even get WP, I have naturethroid but it’s not working- I miss Armour

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Then you should know that this is a UK thyroid site. I’m American too but living in the UK, but I’m definitely not going to give my source to a nameless stranger.

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Definitely write a separate post about this Savysofa... People will want to help. Good luck

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It's a tough one, I agree with saying you want to go back on T3 and assess the response, if it's a flat no then self source. I self sourced for 6 months felt lots better so decided to tell gp. He said if I felt better he would prescribe if nhs endo agreed, endo agreed then Dr refused on cost! That made me angry so I went thro 10 months fighting the system to get individual funding. I won it but keep a big private stash as let's face it they can remove it again just as quickly. Self sourcing if far less stressful but my concern is having it all on my records and regular testing. Just dealing with the nhs gives me anxiety, when I'm assertive and push for better care I'm called argumentative! If I don't agree with Dr I'm called non compliant, I find it very stressful, I am changing gp again 3rd time in 15 years but no guarantee new surgery will be any better. My endo is out of my area but has been good last 2 years, rock and hard place.

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That's an terrible way to treat you, no wonder you self source if T3 gets treated like a favour they can take away without thought for you. With many people with thyroid disorder fighting for accurate diagnosis and then having to learn all about the condition and it's treatment and then having to battle for the right tests and medication it's no wonder many end up self managing the being careful of the medical system. A couple of books by well known doctors snigger at the idea some funny patients saying levothyroxine doesn't help and a recent review paper of T3 complains of aggressive patients demanding T3 because of Google. We seem to be stuck with some patients not feeling believed or helped on one side and some medics seeing us as demanding and probably anxious internet hypochondriacs on the other. Don't know how we get a dialogue going between these two versions of realitty... Maybe there is scope for patient voices in the new NICE guidelines

Michael

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Read the damning report this week by The Patients Association of the abandonment of thyroid patients who need T3

healthunlocked.com/thyroidu...

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Wow- ppl on this site can be pretty rude

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Savysofa

If you start a post of your own, outlining a bit of your thyroid journey, any members who have information on possible sources of Armour may contact you by private message

Sources of non prescription medication can not be mentioned on open forum

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I think honesty is the best policy. You cannot expect him to 'fix' you if he doesn't know the problem he's starting with and it is your health and life at stake. Explain that you found T3 was working for you before and why you felt so desperate as to self medicate.

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It's an interesting question. I am not due for a medication review or a thyroid test via my GP or local endo for quite a while, so am self-medicating (via private prescription from an endo on Thyroid UK's list) for 6 months to see if NDT makes a positive difference for me. If it does, then I'll tell the GP, otherwise I'll switch back to levo alone before the GP or the local endo get involved again so they'll need never know.

Unfortunately, my normal GP doesn't know enough about thyroid matters, and the local endo is completely close-minded (I've seen him for two different medical matters and he has been hopeless on both) to anything other than treatment with levothyroxine alone. I feel the NHS has failed me on this, so I feel no obligation to share my self-medication with them unless/until I am certain that NDT works better for me than levothyroxine alone. Even then, a little bit of me wants to not share, as the GP practice is appalling at sharing test results or medical records with me. However, that feels petty, so I'll probably share once I am certain NDT works for me.

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Liothyronine should work pretty quickly. It is the real hormone after all. However if you are not absorbing it that will show up if you are tested for reverse T3

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If the Endo is worth his salt then he will be able to see from your results that you are not taking what he thinks you are. On taking any form of T3 then results are read differently so he will be able to tell that your results are different.

When on any form of T3 then the results if well medicated should be suppressed TSH, a FT4 lower than usual but a FT3 high in its range. I would probably tell him you started to see if you felt better and you did so continued so if he is happy with that then ask him if he will continue to monitor you and see what he says but it may mean you have to continue getting your own.

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You’ve probably had your appointment now which btw, you are very entitled to , self medicating or not. No one has the right to say you should/shouldn’t see an Endo. Your choices are yours alone. The point is, if you are not optimal by self medicating maybe he could help you, so personally, Ive always been upfront and told Endos, GPs etc that I self medicate with NDT and feel well which is why I’ve not seen either one in years , ...... except for the odd blood test . I wish you well on your journey to better health.

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FOLLOW UP: I did get T3, albeit a very small dose of 10 mcg to start but that’s ok. I almost fainted out of surprise. And no, I did not tell him I started NDT out of desperation. Sometimes you can’t tell all your secrets. It was my first time seeing this new doctor so I played it safe. I did go into detail about my miscarriages and how a full hormone panel showed I’m hormonally younger than my age (40) except my wonky thyroid.

You can read my next post by looking at my profile...Thank you all, I carefully considered all (well, most) of your suggestions!

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If your doctor is an idiot where thyroid issues are concerned then keep it to yourself, get the blood tests s/he prescribes and take no notice of his/her interpretation of the results. If, on the other hand your doc is showing great interest in your condition and is genuinely interested in how you are responding to what s/he is recommending then yes, tell him exactly what dose of what medication you are on.

This is precisely the situation I had. My doc was trying his best to help me but while I had the right medication, he was keeping my dose low because my TSH was low. I increased my dose to the level where I felt normal and I told him when he began to draw conclusions from my blood results. He accepted the situation and drew his conclusions a little more accurately from that point on.

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