Help ! Consultant change -wants to put me back on Levothyroxine ! (On NDT & T3 )

[FunkyC]

Hi 👋

Long post alert !!

I’ve had Hypothyroidism Hashimotos for over 15 years. I was previously on levo. Became very unwell 5 years ago. Did my research

and the links between undiagnosed autoimmune conditions (B12 def/pernicious anaemia/celiac

Went gluten & dairy free which improved matters. Have been dealing with all the autoimmune by myself (healed leaky gut, supplements, injections etc

Gained information re: alternative thyroid medications and T3 being important in blood test results as well as T4.

Searched and searched and with help via here found an amazing endo who I started with privately. As I was self funding and he also practiced on NHS my GP agreed to refer as NHS patient.

He started by adding T3 to my Levo (he suspected conversion Issues ) which my GP prescribed on named patient basis as instructed by endo, which was then withdrawn from local authority (even after a battle) so endo then agreed to prescribe.

I then wasn’t optimal on that combination so wanted to try NDT which endo supported and GP prescribed (Armour thyroid ) and the endo agreed to prescribe the T3 Liothyronine. Happy days ! Felt so blessed and have been doing well on this combo for over 2 years ..

Then ..

Endo retires !!!.. 🤦🏻‍♀️

1st Appoinment with new consultant yesterday was hideous! She wants to put me back on levo & T3 combo-she said my blood levels show I’m toxic !?!

I’m taking 2.5 grains Armour Thyroid & 20mcg Liothyronine daily

June:

TSH O.5

T4 -12

T3 -6

(She wouldn’t give me the ranges)

The toxicity? which she said is due to taking NDT as this isn’t the right treatment. Especially as it’s pig gland and unlicensed in UK. My problem apparently is lactose and she will be prescribing a lactose free levo alongside T3. I dug my heals in when she said she’d be writing to my GP to no longer prescribe NDT. I told her how unwell I was previously on levo and my battle to get well.

Although I agree I think there could of been a connection with the lactose in the levo which didn’t suit. I wish I’d remembered that Armour thyroid is actually lactose free, and this is probably why I’m doing so much better on it than levo and also due to it being natural not synthetic.

She’s also cutting my T3 down to 10mcg daily. She just didn’t want to listen (surprise surprise ! ) and stopped the call abruptly. We left it that what she wishes to implement would be a trial which I emphasised that I wasn’t happy with as even if I did give it a trial (which I wasn’t going to go head with just to pass her off ) and didn’t suit it would then be a battle to get Armour Thyroid reinstated with the GP if she wasn’t going to instruct. She doesn’t want me to be on NDT passé and more to the point I don’t think she wants me under hospital any longer as it’s in Kent as I’m in London. Even though I had a right to chose.

I was in pieces yesterday after years of feeling better and now my battle it’s come to this !!! Another battle !

I can’t afford to do it alone privately otherwise I could go to my original endo as he’s still practicing privately. Or to continue to get T3 under her I would have to agree to the lactose free levo (which on research I’ve read isn’t licences here ) so all she reasons for not being on Armour thyroid are contradictory!

Should I just go it alone and buy an alternative NDT & T3 online and risk the component change ?

Help !!!

[SlowDragon Administrator]

There are two U.K. licensed lactose free levothyroxine brands

Teva and Aristo

Other options are liquid levothyroxine

Or oil based Levo in gel form

thyroiduk.org/medications-f...

[FunkyC in reply to SlowDragon]

Thank-you ! I don’t really want to go back to levothyroxine as I’m doing better on NDT -her issue was that the lactose in my medication was making my thyroid function “toxic” shown in my blood results. Armour Thyroid dosnt contain lactose 🤷🏻‍♀️

I don’t take anything food/ med /supplement wise with lactose or dairy in.

Taking levothyroxine will be a step back for me

[SlowDragon Administrator in reply to FunkyC]

They are being tasked with getting everyone off NHS prescription...

If you have to change to levothyroxine...perhaps insist on liquid or oil based gel (both are not cheap...so they would be reluctant)

[FunkyC in reply to SlowDragon]

Really ? Is this since Covid19 ?

[humanbean in reply to SlowDragon]

They are being tasked with getting everyone off NHS prescription...

Sorry, SlowDragon I'm not sure what you meant with this statement. It isn't clear what the NHS is trying to stop prescribing?

[SlowDragon Administrator in reply to humanbean]

Seems to be new aim .....Trying to get NHS patients off Armour (all NDT) and to get any patients on T3 either off T3 completely...or down to 10mcg per day

[SlowDragon Administrator in reply to FunkyC]

Obviously all vitamin levels need to be optimal too

[FunkyC in reply to SlowDragon]

Yes I ensure that, thank you for your help 🙂

[Hay2016]

Is your hospital in medway Kent? I was told my issues were lactose too!

[FunkyC in reply to Hay2016]

Yep 👍

[FunkyC in reply to Hay2016]

I’ve sent you a PM

[Bettybluebell]

Can you please give me the name of your original private Endos? I'm really struggling to get anyone to help me with similar issues.

[FunkyC in reply to Bettybluebell]

I will PM you

[Sasperated]

Hello - I feel for you and all of us who have encountered this resistance to help us to optimum health! I am currently in a bind in that I wanted to see a specialist and got a private referral from GP, only to find that the specialist wont see private patients. No chance the GP will pay for me to go. I wonder if you would mind telling me your specialist’s name as it sounds as though he will take a private referral. I am keen to get a T3 dosage as I can buy it cheaply in Europe .. if I ever get to go there again!! Wishing you good luck...

[FunkyC in reply to Sasperated]

I will PM you

[Hidden]

You should never have to go off a drug once you feel optimised on it!

If your doctor is worried about your TSH (most doctors tend to be when it´s low in range or below range), that is not going to change on T4 + T3. It´s T3 that suppresses the TSH, not NDT as such.

Could you order Armour online if your doctor refuses to prescribe it?