WHERE TO FROM HERE

[NIKEGIRL]

Hi. I am 10 months post thyroidectomy. I am well and am on 180ndt a day as a single dose. My GP is telling me he is concerned about such a high dose and feels I am using the NDT as a stimulant to live my active lifestyle. My GP has told me he is worried about me and the 180ndt is as addictive as nicotine.

At my last blood test result my levels were

TSH 0.01 range 0.40-4.0

T4 14.2 range 10-22

T3 4.8 range 2.0-6.0

I feel good. I have no physical symptoms of over medication. And despite this I am now being asked to go for the following blood tests

prolactin, follicle stimulating hormone, leutinising hormone and growth hormone.

How do these blood levels affect TSH?

I feel the dr is looking for reasons to withdraw the prescription of 180ndt and he told me when he wrote the script that he reserved the right to withdraw it.

I feel invalidated. I feel very well. I’m happy. Living life.

It is not as easy as finding a new dr. I live in New Zealand and getting a dr is hard so right now that is not an option I am wanting to explore

I have told the dr my TSH may never recover and he tells me when I see him every time that the NDT is a stimulant and it’s addictive and he’s worried about my high dose and he believes the TSH is suppressed because of the high NDT dose in his opinion.

I am 50. Female going through menopause. Physically active.

What can I do to support my case of not being over medicated around the issue of a suppressed TSH

THANK U

[Brightness14]

I also have no thyroid and my results when feeling well are TSH 0,005 FT4 20.8 FT3 6.06

I am 77 years old these results make me feel well too. Yours are below mine.

These doctors are only looking at your low TSH. I am lucky I have a letter from my professor surgeon stating that my TSH should always be this low.

What NDT are you on? I am on Thyroid s NDT and only need 2.25 per day but you are younger and use more energy.

Resist you doctor after all they are suppose to make you feel well, and you do.

[Buddy195 Administrator]

‘I feel invalidated. I feel very well. I’m happy. Living life.’ ⭐️🦋⭐️

This is such a joyous statement Nikegirl!

You’ve come such a long way and we are all 100% behind you in your fight to stay on the same dose of medication.

I have no knowledge of the health system in NZ but hope forum members can at least help you find some papers/ links to help you fight your corner.

[NIKEGIRL in reply to Buddy195]

Hi. I hope all the people who wrote on this thread will read this. I have woken up and overnight thank you for your words. I am very well. I’m happy and living my life. I will read the articles pinned for me. My NDT is armour thyroid from ameroca. The NDT is compounded for me privately in another part of New Zealand and I pay for it privately as the New Zealand government only funds levothyroxine-through the public health system. The dr reluctantly wrote me script for 180ndt when I told him that I self medicate and the reason I chose to self medicate is I am exhausted by having to come to appts and defend myself and instead I chose to self medicate. So he reluctantly wrote me a script for 180 but told me that it came with conditions which were those pituitary blood tests and also that he had the right to withdraw the 180ndt script as he saw fit. NDT is here in New Zealand and I am doing everything I can to get this medication legally because I can get it here and I don’t want to be 80 and sourcing my medication from overseas. I just shouldn’t have to and so I am doing the hard work now to secure my life long medication now so my 80 year old me can enjoy her retirement. Thank you everyone.

[NIKEGIRL in reply to Buddy195]

Thank you Buddy and Helvella

[NIKEGIRL in reply to Buddy195]

I need as many articles about NDT suppressing the tsh. I’m not tech savvy and I understand that the tests will come Back normal and he will very likely reduce my NDT script. Thank u

[Buddy195 Administrator in reply to NIKEGIRL]

I personally don’t know of any, but hopefully others will. If you don’t get any replies I would re post but this time with the question in the post’s title

[NIKEGIRL in reply to Buddy195]

Good idea I have until December 1 to find evidence

[RedApple]

Nikegirl 'he tells me when I see him every time that the NDT is a stimulant and it’s addictive

You're not the first to be told such rubbish. Thyroid hormones are absolutely NOT stimulants, nor are they addictive. I really do not know where they get this idea from! Clearly they are not speaking from personnal expereince!

[Sparklingsunshine in reply to RedApple]

I think he's confusing NDT with methamphetamines. If it had the qualities he thinks it does it would be a street drug. There would be dealers furtively selling it in pub car parks. Honestly the ignorance of the medical profession is embarassing.

[RedApple in reply to Sparklingsunshine]

I suspect they think thyroid hormones are in the same category as anabolic steroids. Whatever their reasoning, they are completely wrong. This is a classic example of why thyroid patients end up self medicating and bypassing their medical professionals.

[Sparklingsunshine in reply to RedApple]

I guess it doesn't help that T3 is sometimes used by bodybuilders to lose weight and by people with no thyroid problems, who think taking Levo will speed up their metabolism. That said though they shouldn't tar genuine thyroid users with the same brush. And thyroid replacement is not addictive.

[Hidden in reply to RedApple]

They don’t think at all RA.

They guess, assume, intimidate ….. but thinking is not part of their mindset.

[Hidden]

I don’t think that you have to support your case. I think that this doctor has to support his case and present evidence of the ridiculous assertions he’s making.

I would suggest self sourcing NDT if you can’t get any sense out of him

When you say 180ndt, do you mean 3 grains (tablets)?

[NIKEGIRL in reply to Hidden]

Yes. I’m on 3 grains but my NDT is made up from powder into a capsule for me privately

[greygoose]

Of course your TSH is suppressed because of the NDT! 🤣🤣🤣 Where did this idiot go to school? NDT contains T3. T3, at the right dose - i.e. one that makes you well - suppresses TSH. That is what it does. That is a basic rule of thyroidology. How come he prescribed somthing he knows absolutely nothing about?

You hear the same thing about T3 - it's a stimulant, it's addictive - pft! It's a basic requirement for life. You cannot live without T3. A healthy gland makes it naturally. If you have no thyroid you need to take it exogenously. Thyroid 101!

I wish it were a stimulant. I take 75 mcg a day - you're only taking 27 mcg! - and I feel totally unstimulated this morning, dreaming about going back to bed. As for being addictive, ask him if his diabetes patients are 'addicted' to insulin. No? Well, it's the same thing. Diabetes patients can't live without insulin (no-one can) and hypos can't live without T3 (no-one can). We all need our full quota of hormones every day because they are the basis of life and that has nothing to do with addiction! Silly man.

TSH 0.01 range 0.40-4.0

T4 14.2 range 10-22 35.00%

T3 4.8 range 2.0-6.0 70.00%

So, your FT3 is 70% through the range, which is more or less where most hypos need it to be. It's good. Not too high, not too low. Not surprising you feel good. And your dose is about average, not high at all. He needs to learn that he cannot dose by the TSH. Once it gets below 1 it is a very bad indicator of thyroid status - especially when on T3 - and dosing by the TSH is the best way to keep the patient sick! He really, really doesn't understand how all this works, does he.

I am now being asked to go for the following blood tests

prolactin, follicle stimulating hormone, leutinising hormone and growth hormone.

Yes, he's testing your pituitary. lol He thinks your TSH is low because you have a pituitary problem. He's going to be so disappointed! He really, really, really doesn't know how all this works! But, I'm impressed that he knows that TSH is a pituitary hormone. Knowing that, he ought to better understand the feedback loop. Sigh. I suppose you can have everything.

[Hidden in reply to greygoose]

😉😉

[NIKEGIRL in reply to greygoose]

Thank u. The tears I have cried over the last few days could fill a measuring cup. It just shouldn’t be this hard

[greygoose in reply to NIKEGIRL]

No, it shouldn't. If only doctors were educated correctly and learnt about hormones, nutrients and how to interpret blood test results. Three things they are absolutely rubbish at!

[radd]

NIKEGIRL,

Hey, well done you!

It is worth noting these ratios for future evaluations because it things go askew it can be hard to remember your best values. You are obviously not over medicated on those numbers and TSH will likely remain low due to the pituitary recognising enough T3 in the blood stream.

I think this worth pointing out to your doctor and maybe giving him some research on how TSH is secreted less with full thyroid hormone replacement (eg T4 + T3). This Tania Smith blog explains how people with thyroid issues taking exogenous thyroid hormone replacement meds may have an over-reactive TSH response which can not be compared to a normal-thyroid healthy population. ... .. thyroidpatients.ca/2019/09/...

With regard to your additional tests, a low TSH won’t have any bearing on these hormones. They are negatively influenced more by a high TSH or inadequate/excess thyroid hormones. Your thyroid numbers are great and unless there are other issues these other hormone levels should be good also.

[Hidden in reply to radd]

I’m not cynical by any means but I think that any doctor who doesn’t know this isn’t going to take kindly to being given information by a patient..

We shall see 😉

[radd in reply to Hidden]

Ew2,

Sadly, yes. We not only have to self educate (and often self finance), but may remain at the peril of the uninitiated and who may refuse to be educated. However, it is better to try than risk meds being withdrawn.

I can't remember who has good info on a low TSH to present to a GP .... likely tattybogle ?

[Hidden in reply to radd]

Yes. I believe Tatty has some excellent information on this subject. 😉

[NIKEGIRL in reply to Hidden]

I have been given some links to articles and I have them copied and I will be ready should I be declined another script of NDT. I am the first patient for this dr who has had NDT so he is out of his depths and I’m not wanting to teach him or train him anything g but I do want his signature on my NDT prescription and this is why I am staying the course. He promised me before surgery he would treat me based on my symptoms and I now have no symptoms. But somehow the goal lost has changed for him but it hasn’t for me

[Batty1 in reply to NIKEGIRL]

I was promised this by my first Endo after my thyroidectomy and that was all garbage talk …. Once your thyroid is gone they got you and you feel stuck.

[NIKEGIRL in reply to radd]

That Canadian article is very good. Thank you. I will use it to help advocate for myself

[NIKEGIRL in reply to radd]

Thank u. Great article and I have printed it off to hand to my gp

[radd in reply to NIKEGIRL]

Haha, just replied to your other thread 😊.

[tattybogle]

give him some reading homework to think about:

ask him to read and think about the references in this post, particularly those in the first reply (which is continued much further down) : healthunlocked.com/thyroidu.... tsh is just the opinion of your pituitary about your dose but your pituitarys opinion is a bit warped once you take thyroid hormone

[NIKEGIRL in reply to tattybogle]

Thank uTatty

[NIKEGIRL in reply to tattybogle]

Thank u for the articles. I am hopeless at technology but managed to get the articles printed out so thank you from the bottom of my heart

[NIKEGIRL in reply to tattybogle]

I managed to get access to the BMC article but not the lancet article. I couldn’t complete an account set up

[SlowDragon Administrator in reply to NIKEGIRL]

I will send you full copy of Lancet article by PM

It’s probably not however very useful to you as it’s derogatory re NDT

Though pro T3

[NIKEGIRL in reply to SlowDragon]

Hi SD. Thank you. Yes I need pro NDT articles for this GP. He is out of his depth. He has no one on NDT . I am his first patient and I am the one who went in and said levothyroxine is not working for me and I want NDT and within 2 weeks not was like someone switched my body on after taking levothyroxine for 13 weeks and feeling like I was drugged and sedated. NDT is what I need and what my body has responded to post thyroidectomy and I prefer 195 as a dose but am doing 180 to appease this GP

[Beads]

The tests he’s sending you for are looking at your pituitary. He thinks that’s not working because your TSH is below range, but your free T3/4 are comfortably within range.

Obviously he’s barking up the wrong tree as everyone else has already told you. Arm yourself with as much evidence as you can that T3/NDT suppress TSH, because when your new bout of tests come back ‘normal’ he’s going to use that as evidence that your dose is too high and that’s why your TSH is so low.

[NIKEGIRL in reply to Beads]

Yes that is exactly my concern so I urgently welcome all articles that I can use to support my case that NDT suppresses tsh by its very nature. I cannot stress this enough.

[Batty1]

The problem is doctors don’t like NDT and will find every excuse to have you stop or reduce it …. My Endo considers himself current but won’t prescribe NDT because “it’s made from pigs” ewww … jerks

[SlowDragon Administrator in reply to Batty1]

My Endo considers himself current but won’t prescribe NDT because “it’s made from pigs”

And so are many (most?) replacement heart valves!

[NIKEGIRL in reply to SlowDragon]

Good point

[SlowDragon Administrator in reply to NIKEGIRL]

And a pig valve is infinitely superior to mechanical one …..but only lasts 20 years

[Batty1 in reply to SlowDragon]

Hard to reason with the insane…🤣

[NIKEGIRL in reply to Batty1]

My view is that the job of medication in this case NDT is to restore the person back to who they were before the disease struck in my case graves and for me NDT does that. And my battle is to convey to the dr that I am well and this is what wellness looks like for me. A drs personal beliefs should not come into this equation. However I accept that it does and allowing them their beliefs will cost us our health which I promised myself before surgery that I would never allow a dr to have that much control of me. NDT is a valid treatment option here in New Zealand. According to the official information act here there are 10,000 New Zealanders on this medication. I am not angry as I write this. I want the treatment that works for me and I now know I somewhat have the burden of proof however I will be asking my GP to show me where he is getting his belief that NDT is as addictive as nicotine and a stimulant. I will be asking him his views on insulin and is that to a stimulant and addictive for the diabetic patient. What I will not tolerate is being issued false statements because it is not fair, professional or ok ever. I do accept that I may need to find a new dr however that is not easy because if it was I wouldn’t be going through this process. Again I am not angry but rather worn down by this rubbish. My dr told me before surgery he would treat me based on symptoms post surgery. Well I have none now so for me NDT has done it’s job and it’s time to live my life again.

[Batty1 in reply to NIKEGIRL]

I 100% agree with everything you said.