Results on NDT

[birkie]

Hi everyone ❤️

I have now been on natural dessicated thyroid medication from roseway for around 10wks

I started on one grain [ as instructed by clinician at roseway] then after 2 wks I started on 2 grains I found this to much, so after talking to members who take ndt...I started lower at half a grain for 1wk then 1 grain for the next week.

I have been on a steady dose of 1 and a quarter grains now for around 5wks .

I have just received my thyroid bloods today.

Previous bloods before going on ndt:.....on T4

May 2024.....TSH....45.6....[ range..0.30...4.50]

T4...10.5......[ range...11.00...22.00]

T3..3.2........[range...3.10...6.80]

New bloods on NTD:

TSH.....18.3.... this as improved from the 45.6 in may

T4........8.6... this as gone lower...🤔

T3....4.3.... this as improved from the 3.2 in May

I reckon I need to increase the ndt🤷‍♀️, the clinician at roseway did tell me because my thyroid hormone levels were so dire..especially TSH I should be looking at around 3 months on the ndt to see my levels improving .

I'm having a prescription consultation on Oct 2nd to receive another ndt prescription 👍 will my T4 improve with the increase?

I will be mentioning my new blood results at the consultation on Oct 2nd👍

[SlowDragon Administrator]

you’re probably ready to increase to 1 and half grains this week or next week

Are you splitting dose?

[birkie in reply to SlowDragon]

Thanks slowdragon❤️Yes I'm splitting it 3 ways morning afternoon, evening 👍

Feeling good on it...just had a blip with my parathyroid hormone going out of range again 🤦‍♀️ but gp not bothered about it 😡 but as you know I have primary hyperparathyroidism .

Yes I need the increase, but I will be asking the roseway clinician about my bloods on ndt👍

[waveylines in reply to birkie]

So pleased for you Birkie. That's fantastic. 😊😊😊

[sparkly]

Great news to read you're obviously tolerating the ndt. Hope this will show your consultants that this has to be prescribed for you now 😊🤞

[waveylines in reply to sparkly]

Don't think it works like that sadly....lol.

[Cup-cake7 in reply to waveylines]

May I ask cost

[birkie in reply to sparkly]

Yes I've been told umpteenth times by gps and endocrinologists I will not get ndt on the nhs😡😡 but I'm going to try the human right ploy😄 I'm going to point out the nhs are depriving myself and others on private ndt prescriptions the right to the correct medication.

I'm writing to my MP and pals, although I don't think with these bloods I've just had done any gp or endocrinologists will agree they are working, as 2 are out of range, they won't take into account I've only been on them nearly 10wks at low doses, building up my dose , they just have no idea about thyroid conditions 🤦‍♀️ and even less about patients without a thyroid .

I'm increasing the ndt to 1 and a half grains , and I'm still walking the ndt road until I get my next thyroid bloods done, hopefully the increase will show on my next bloods🙌

Be interesting what my gp will think of the results I've just had done, she thinks I'm on the silly regime she urged me to try...peppermint oil and lactate enzyme one hour before I take my t4...😂😂😂 wonder if she will contact me and take the praise for my TSH coming down and T3 going up😂 be nice to tell her " well infact doctor.... it's the ndt doing that😂😂😂😂👍

[RedApple in reply to birkie]

' I'm going to try the human right ploy😄 I'm going to point out the nhs are depriving myself and others on private ndt prescriptions the right to the correct medication.'

Just a simple explanation for the benefit of anyone reading this, who doesn't understand why birkie has a problem getting NDT prescribed through the NHS:

Desiccated thyroid is an 'Unlicensed' medication in the UK. This means that respnsibility for prescribing it lies with the individual doctor. So, for example, if Dr AA agrees to prescribe, and then moves away, retires or leaves the practise at some point, your prescription will stop. Back to square 1. Unless and until another doctor agrees to take over prescribing this 'unlicensed' medication.

Compared to levothyroxine and liothyronine, NDT is extortionately priced. It's not made in the UK, so has to be imported (typically from the US). So, even if you are fortunate enough to get someone to prescribe this 'unlicensed' medication, you may still be refused it by the relevant NHS funding body on the grounds of cost.

[sparkly in reply to birkie]

Your gastro team need to add weight to this. If it's physically proven that ndt is the only medication that you can absorb to firstly, start controlling your thyroid and secondly stop all the dreadful issues you have with other thyroid meds. Fingers crossed for you 🤞

[Alanna012]

So happy this is working for you Birkie!

[pennyannie]

Hey there again :

Yes - as you increase the NDT you will see your T3 and T4 slowly build and stabilise :

Once optimal your T3 will likely be proportionately higher in its range than your T4 :

eg:- - on T4- Levothyroxine only - my T3 was 25% with a T4 at 100% through the range :

On NDT over 6 years - my T3 comes in at 90/110 % with my T4 at 25/30% through the ranges.

I have no signs of being hyper - and if anything run myself slightly hypo and take 1 dose at around 2.00 am at a toilet break and my dose 1 + 1/2 grains.

[waveylines in reply to pennyannie]

Interesting that doesn't work for me. I'm on ndt (for 17yrs) and still need my ft 4 near the top of the range. This puts my ft 3 just above mid range. I think the truth is some are better converters than others. And it's all about the sweet spot for each of us which will vary.

[pennyannie in reply to waveylines]

Yes - I'm with Graves and post RAI thyroid ablation 2005 - so presume without a thyroid :

Birkie the O/P is I think Graves but had a thyroidectomy :

and yes - It is very individual as to where we feel at our best.

[Cup-cake7 in reply to waveylines]

May I ask were you recommended ndt at Roseway. I spoke today and T3 suggested alongside levo

[waveylines in reply to Cup-cake7]

Hello I've not used Roseways. 😊

[Cup-cake7 in reply to waveylines]

Sorry wrong person question

[1tuppence]

It's wonderful news birkie. No digestive problems, so you're obviously tolerating NDT. That must be such a great relief for you. Onwards and upwards xx

[arTistapple]

Couldn’t be more pleased for you birkie. Walk don’t run seems to come to mind. Remember the NDT will be doing all sorts of good you may not be aware of yet - under the radar, so to speak. Everything does not happen at once (although in saying that, some people do seem to get that effect, lucky so and sos).

Still no upset bowel will continue to reap benefits alone!

Looking forward to your next report.

[Bertwills]

I.’m very tempted to try Roseways’ NDT myself after reading your posts. Just got my second lot of T3 from them so maybe next year. So glad you’re on the mend.

[Cup-cake7 in reply to Bertwills]

I got mine today too T3. What are we looking for in our bloods is it for T3 in top third. I may be out of touch as sir if this is over my head sadly

[Bertwills in reply to Cup-cake7]

Yes, that’s right. If you want more details best to start a new thread. Post a new question or private message me.

[Cup-cake7 in reply to Bertwills]

👍🏼

[Cheekycharlie1981]

how can I get NDT? I’ve been wanting to come off levo for many years as I’m just not well. If anyone can message me as I’m just put off by self management when I’m not clued up enough and mostly worried about a reliable source.

[helvella in reply to Cheekycharlie1981]

PLEASE:

Write your own brand new post and ask for sources. That post will be closed to replies but members will reply by Private Message.

Your reply here is also diverting from the original poster's reason for posting and can confuse when there is a mixture of replies to her and to you.

[Cheekycharlie1981 in reply to helvella]

I am sorry, nothing intended.

[helvella in reply to Cheekycharlie1981]

I'm sure you didn't!

But it does work better to post separately.

[helvella]

Obviously, we all know that these are words, not law, not reality. But you might consider adding this to your case:

Guidance

The NHS Constitution for England

Updated 17 August 2023

Access to health services

Your rights

You have the right to receive care and treatment that is appropriate to you, meets your needs and reflects your preferences.

gov.uk/government/publicati...

[Brightness14]

Which NDT are you taking birkie?

[birkie in reply to Brightness14]

It's a combo of T4, T3, in capsules , but the clinician told me to take the powder out and mix it with a bit of water as the ingredients in the capsules may upset my gastric issues .It's a compound they make it with no nasty fillers👍

[Brightness14]

Ok great news thank you.

[LuciaAsturias]

Hi birkie I've been on NDT since October 2016, after 6 months on levo and feeling still very ill and exhausted. I'm under a private endocrinologist at Spire Liverpool since April 2016 since my GP refused to do my full thyroid profile Sep 2015-Apr2016.

I was started on armour thyroid and then 2 years later started with ERFA NDT for 90mg daily - I pay the equivalent of 800 sterling a year, of which 500 are medication value (per year). I've been fine with it, my endo is very kind and keeps an eye on my cholesterol, sugars and general health as my physician too.

And I self fund, private health insurance won't cover me either, and I am about to retire and worried about the funding for my thyroid medication. I'm 64 yo.

The problem with being referred back to the NHS is I won't see my endo and after 6 months I'd be discharged and referred back to my GP and be seen by Joe blogs... Or anyone on locum... I don't want to take the chances. My endo writes to my GP every 6 months and GP complies with blood testing and referrals to other services within NHS.

Thank you for mentioning Roseway. Will investigate further. Started my search here today looking for Bioiberica NDT products to buy in Spain when on holidays, and HU comments have clarified Bioiberica only provides the raw ingredients for ERFA which I already take.

On my bloods, I know my endo keeps my TSH on 0 or around and that helps me to keep T3 and T4 levels within normal range. Any other info, let me know and see if I can be off help.

Cheers xx Lu

[birkie in reply to LuciaAsturias]

Thanks LuciaAsturias❤️

My son if funding my private prescription of ndt I'm registered disabled so I receive disabled payments but no where near enough to pay for the prescription , the first cost was £178 that was consultation, e prescription and the medication.

It won't be that much this time though, it will be the e prescription charge £35 and the medication at £88 🤞 I've been on it 10wks now and no gastric issues ☺️ I'm starting to get a bit of energy back but I reckon I've still a way to go yet.

Like yourself I'm loathed to go to my gp as all she wants to do is put me back on t4 levo with a regime of taking peppermint oil capsules and lactate enzyme one hour before I take the t4....she can do one🫷 dose she really think I'd come off a medication that's working for me? 5 years of sheer hell on synthetic t4,tt3wheres her patient care....no its all money 💷

[LuciaAsturias]

😭 it's awful... I've got a blue badge for my thumbs base joints osteoarthritis but that doesn't entitle me to get disability allowance... Maybe I should apply again now that I'll be on 1/3 or less than my usual income? But it's such a battle, it's disheartening 💔 Plus other disabilities they've found since 2016 and I've had to have treatment and learn to live with or had cured with intervention such as: glaucoma, liquen planus, C-PTSD... MSK issues with my back lumbar hernia, osteopenia, etc... Anyways, like you I'm lucky my husband can and is willing to fund my healthcare needs 🙏🏻 Gluten intolerance is getting worse, yet most restaurants no longer cater for gluten free menu options... I've been ill this last week 3 times, from visiting my daughter and grandson in Bristol and daring to eat out 🥴

Lovely to meet you

Xx Lu