GP review - low TSH on NDT

[Farrugia]

Hello

I've got my annual medication review for thyroid and HRT with my GP on Wednesday. I'm worried I'm going to have a difficult conversation because my TSH is very low, presumably because I'm on NDT.

Serum TSH level < 0.01 mIU/L [0.27 - 4.2]; Below low reference limit

FREE T4

Serum free T4 level 15.1 pmol/L [12.0 - 22.0]

Surprisingly they tested T4 as well.

These are repeats of tests done six weeks ago, repeated because TSH so low. I have told them I'n on NDT and that is probably why my TSH is so low but it doesn't seem like this has been taken on board or maybe the message hasn't got through.

I have been prescribed NDT (Armour) by a private thyroid doctor and my last lot of tests were fine (including T3).

I started taking Armour about a year ago (my T3 was consistently too low on Levothyroxine) and I feel sooo much better. I'm taking 2.5 tablets (grains?) per day. I was taking 3 but felt very shaky and my pulse rate sped up so have dropped back down to 2.5. I'm awaiting full thyroid blood test results from my thyroid doctor and I'm due to have a `zoom with her soon.

I'm worried that the GP is going to try to make me stop NDT and make me go back on Levothyroxine. (I'm also keeping fingers crossed that she doesn't want to change my HRT) Can anyone give me some advice on how to argue in favour of NDT despite the low TSH?

Thanks

[Sparklingsunshine]

I shouldn't worry, you aren't beholden to the NHS for your NDT as you get it privately. Its not really any of their concern. If they try and pressure or scare you politely and firmly tell them you were never well on Levo and as getting anything else prescribed on the NHS is virtually impossible, you were forced to go private.

They might play the low TSH card of osteoporosis and heart issues but they are for hyperthyroid patients, not those on replacement thyroid therapy. There's no FT3 result but you aren't over replaced presumably.

Tell GP you monitor your thyroid health via your own blood tests and under the supervision of a private doctor. Maybe they will remove the necessity of the annual NHS blood test malarkey if you are no longer taking Levo. Which will be a good thing.

We patients really shouldnt be so much in awe and fear of these people. Your GP has no power to stop you taking any medication you source privately. Your quality of life is more important than their guidelines.

[Charlie-Farley]

Your doctor can’t make you do anything Farrugia - it’s your body. Most GPs only know enough to be dangerous. That’s to say with such a eye bogglingly wide remit how on earth can they know enough to be effective. The NICE guidelines have latitude written in, but doctors don’t know enough to use it.

The picture is an excerpt from the start of NG145

There are pinned posts on TSH and Also one on NHS and NICE guidelines these will help you hopefully to start to educate your doctor, but do not be bullied. If you are feeling well that is more important than pleasing your doctor.

Excerpt from the start of the NICE guidelines, NG145

[SlowDragon Administrator]

I'm worried that the GP is going to try to make me stop NDT and make me go back on Levothyroxine. (I'm also keeping fingers crossed that she doesn't want to change my HRT) Can anyone give me some advice on how to argue in favour of NDT despite the low TSH?

Your GP should work with you. Not dictating or bullying you

Point out that ALL thyroid patients use to be treated with NDT before the introduction (and profit) of synthetic thyroid hormones

At least 10-20% of thyroid patients struggle on just Ft4

[Farrugia]

Thank you all for your replies. I've had a lot of problems over the years with doctors refusing to believe there's anything wrong with me which is why I now expect the worst. It has been so good to have the support of this forum and to finally find a doctor who will prescribe NDT. It's expensive but it makes such a difference to speak to someone who doesn't doubt your symptoms and who will prescribe better medication.

[Brightness14]

I am on NDT and have been for years I source it myself.

My GP thinks that I am on Levo I never mention anything and just carry on taking the prescription to the Pharmacy and putting the Levo into a spare drawer.

Please don't worry I have been doing it for years.

[Sparklingsunshine in reply to Brightness14]

Love your approach but what happens when you need a thyroid blood test via NHS? Dont they query the suppressed ( presumably) TSH? I'd be a happy bunny if the GP would leave me alone lol.

[Farrugia in reply to Sparklingsunshine]

This is what's happened to me - my annual thyroid blood test shows suppressed TSH so now I've been called in to see the gp.

[Sparklingsunshine in reply to Farrugia]

If your doctor has any clue then if you tell them you're taking NDT, which contains T3, he/she should know T3 can suppress often TSH, regardless of how much you take. But he/she probably wont know as thyroid knowledge is sorely lacking.

You can either keep quiet about the NDT and the GP will probably just lower your dose of Levo, which is no loss, or 'fess up 😆 and see what they say.

[Brightness14]

I live in France but my GP stills does blood tests. TSH, FT4 FT3 and Vit D usually. Plus a FBC once a year. NDT is banned here so needs must.

[pennyannie]

Hello Farrugia :

Does our doctor know you have sought specialist help for your thyroid health - if so - she shouldn't be interfering with the consultants recommendations -

You can't be answerable to both - as their views - likely conflicting :

If you are still with a prescription from your doctor for any thyroid medication, I believe she is obliged to run a yearly throid function test - but doubt this now the case :

[Farrugia in reply to pennyannie]

Yes I have informed them I've been prescribed NDT by a private doctor and they have stopped prescribing levothyroxine. I only spoke to a receptionist about this so it's possible that it hasn't been made clear on my notes. I'll find out when I see the gp.

[waveylines in reply to Farrugia]

Has the private consultant written to your GP explaining you are on NDT. The TSH is commonly suppressed on NDT due to the T3 content. Your GP needs to focus on Thyroid hormone levels staying in range. If the private practioner has written this absolves them off responsibility of the effects of the NDT on you as they are bring advised. Most GPs like this as they don't have to worry.... Lol. At the end if the day it's your choice your body. GP will simply note this down so they are not liable! It's more about litigation then medicine these days.... Lol.At my previous GP surgery the doctors would tell me how much better I am in NDT and it is definately the best treatment for me they would say..... But they would NOT underwrite so had to move to a GP surgery who would. Hey presto didn't have to pay anymore. All very very wrong but the reality of the times we live in.... Stay strong, calm & polite. Xx