Anyone on NDT in the UK?

[Hashi_warrior]

I'm trying to find other people who get the NP Thyroid brand on prescription in the UK, or who take other NDT brands but are not happy on them and would like to switch to try NP. I found it much better for my sensitive stomach due to the different fillers and I find it doesn't flare up my autoimmunity like other NDT brands seem to. It also seems to get into my system much easier and alleviates the brain fog that I still had with other NDT brands and Levo.

It has become quite difficult to get NP in the UK and I am unhappy with the pharmacy I currently get it from for several reasons. Another pharmacy has said their supplier will raise a licence to import if there are a few more people requesting it, so I thought I would put a shout out on here to see if anyone else is on NP and would like to switch provider, or if anyone is considering NP as an alternative NDT to try. In co-ordinating requests to the one pharmacy, the supplier will see there is a demand for import and this will hopefully lead to a more reliable supply of this medication in the future.

Please do get in touch via DM and I can provide the details of the helpful UK pharmacy who fulfil both NHS and private prescriptions for NDT via mail order (I don't have any affiliations to them, I have simply always had very helpful and efficient correspondence from them, after finding their details on the list of Pharmacies on the Thyroid UK website).

This medication has saved my life so if anyone is struggling I would highly recommend it. Also if anyone wants any advice on getting an NHS prescription for NP I can also provide info about how I managed it (I did have to initially pay privately for a prescription to prove that my health was improving on it). Everything is very hit and miss with thyroid treatment (both meds and docs) so what worked for me might not work for you, but it might be worth a try.

[pennyannie]

My NDT comes from Thailand and doubt I can afford any other option.

[Hashi_warrior in reply to pennyannie]

Is that Thyroid S? How do you feel on it? Would you mind sharing how much it costs?

[pennyannie in reply to Hashi_warrior]

Yes - I take Thyroid S :

I was very well on Thyroid S for 4 years since 2018 and it was reformulated in around 2021 and since then there have been some issues with certain batches but I'm just now on prefixed 23 batches and quietly confident the product is back to pre Covid quality.

We are not allowed to openly talk about suppliers on this open forum - will PM you :

[birkie]

Hi Hashi_warriorFirstly I'll give you my health history 2015 reactive colitis lactose intolerant]..graves thyrotoxicosis,] full thyroidectomy in 2019] , primary hyperparathyroidism 2020.]

After my diagnosis of reactive colitis and lactose intolerance, I found I could not stomach certain medication, aspirin, ibuprofen, antibiotics, some painkillers ect, this was done by trying them ,then eliminating them if I had the stomach and gut issues, the same went for food eliminating dairy and went on lactose free products.

All seemed well and I managed to control the colitis ect, then in 2018 I got the diagnosis of hyperthyroidism and was put on anti thyroid drugs , within 3 days I knew something was wrong, all the stomach and bowel problems returned with a vengeance , I stood back and thought A, had I eaten something I shouldn't have or drank something....no so my only conclusion was the new anti thyroid drug.

After another 3 days this was now becoming bad I had bad cramping with very horrible loose stools, I knew it was definitely the drug so I rang my gp who just told me to continue with the drug as the side effects would lesson, they didn't they just became worse I was now vomiting them back.

I managed to speak to the gp some 3wks later...4wks of not being able to stomach the drug, he put me on another anti thyroid drug PTU which did exactly the same.

I was eventually rushed into hospital in the January 2019 in thyroid crisis , had scans on my bowles which confirmed server inflammation in both large and small intestines.. cause the anti thyroid drugs🙌 finally.... that's why I lost my thyroid because by now I was thyrotoxicosis no saving the thyroid.

So now after full thyroidectomy the same is happening again with the thyroid medication I just can't stomach the synthetic stuff both T4 and T3 but this last 5 years no one at my surgery or endocrinology will help me, they just keep putting me on the synthetic form and I keep reacting very badly to it.

My last to TSH were april 2024 [69.47] and may 2024 [45.66] on 25micrograms of vecemile T4 ] 5 tremendously bad weeks trying to stomach it , and as always I've come off it again , as I truly cannot stand the pain the diarrhoea the fact I can't go anywhere unless I'm very near to a toilet because I have I'm ashamed to say soiled myself when taking this synthetic crap.

My health team which consists of ghost GPS...in that I mean I can't get to see one and the endocrinologists I've managed to see have all denied me a thyroid medication I can stomach... saying the nhs do not prescribe NDT, the last one I saw on Friday 21st june just told me to continue on with the T4 I'm currently on at 25micrograms it's such a small dose you should be ok....did she not see my TSH levels???...25micrograms , which I struggled to stomach anyway would never render me uthyroid, and increasing which I have tried and failed at several times is impossible.

I'm sorry for the long post but I feel the information I've given is relevant to what I'm going through with my health team , no body is listening to my concerns and everyday is a nightmare as both my mental and physical health is being effected .

I'm registered disabled so money is tight

Can I ask what is NP

Thank you if you manage to read this and understand it❤️

[Hashi_warrior in reply to birkie]

Thanks for taking the time to post, I read your message and can totally empathise. I was in a similar situation but with hashitoxicosis for several years. Nobody was able to tell me what was going on and I was frequently in and out of hospital with severe tachycardic episodes. It was a scary time. I also had years of bowel trouble like you and became afraid to go out. Levo didn't work for me either and each time I tried to raise I would feel more ill and my TSH would go up not down as it should, so it was clear I was having a problem converting to T3. I was also on a very low dose and knew I needed more replacement.

It did take me a while to get stable with NDT due to such a sensitive stomach and I went on a strict low fodmap diet for years as well as gluten and dairy free to keep my antibodies down. NP is a brand of NDT from the US that has less fillers than some of the other main brands like Armour and Erfa. It has worked the best for me and was easier to get onto with all the sensitivities I had. Now my thyroid is stable things are much improved. I did have to pay privately at first as there didn't seem to be any other options but then I managed to argue my case for getting it on the NHS after I demonstrated I was doing well on it. I can completely understand about the financial struggle though as I was in that situation too where I couldn't work due to the ill health. Ended up having to get it on credit. It's a disgrace that patients aren't being given treatment options and are being forced into financially stressful situations, not to mention their concerns not being listened to and the general lack of long term support for thyroid patients.

Can I ask if you know, or suspect what might have caused your colitis and lactose intolerance in the first place? It's just that it was my gut problems that started first after a reaction to a strong antibiotic tablet that I was given as a meningitis prophylaxis. I then developed cysts and then gut dysbiosis with IBS-D and dyspepsia and could barely eat 5 types of food for a long time. I feel it was this situation that led to me developing the autoimmune thyroid condition.

Please know that things will get better. Thyroid UK has lots of great resources listing docs who medicate with NDT but you can also phone round your local NHS hospitals and ask the secretaries to find out which endocrinologists oversee patients on NDT. This would be a good starting point. Also phoning your local private hospitals to check if the Endos prescribe NDT, you might find cheaper options than those listed on the Thyroid UK list. I appreciate how much effort it takes to battle for what you need when you are ill, don't lose hope!

[birkie in reply to Hashi_warrior]

Thank you for your reply, we could be twins 😄

Firstly I'll tell you what I think caused my colitis and lactose intolerant

I must be honest with this...I never suffered from any water infections or kidney problems until I met my husband to be, and of course things develop as they do [ think you get the gist] sometime after I develop my first water infection 🙄 not an uncommon thing the gp told me when we become active ,and I was advised to wash afterwards🫣

as the years went on, I found myself having quite a lot of infections both urine and kidney my gp would always put me on a course of antibiotics which alway cured it, then I had a rather nasty kidney infection with a stone, I was rushed to hospital where the urologist put me on antibiotics for 3 months on a small dose for prevention of further infections, after struggling on the antibiotics I felt very unwell on them ...nauseated stomach pain my gp put me on another and I was violently sick so I just gave up.

Then I found I couldn't stomach any antibiotics I just vomited them back, in 2015 I develop what I thought was stomach flu , after over 2wks of going downhill I got the doctor to see me at home as I could not even stand ,and I was passing burgundy red sick and red stools admitted to hospital immediately.

I was immediately put on intravenous antibiotics but continued to become worse, scans confirmed both my large and small intestines were severely inflamed with pus ect, then gastro after 6 days scratched his head because he found no bacteria or viral infection, he sent me for the camera down the throat ,I was taken off the steroid and antibiotics before going down, unfortunately they had an emergency so I was delayed by nearly 3 hrs in that time the sickness and diarrhoea eased , I eventually went down and came back but the nurse forgot to hook me back up to the steroid and antibiotics.

But I started to feel so much better, I even had something to eat.. then around 7.30pm the nurse noticed the antibiotics and steroid had not been hooked up to me so she did it,within 15 minutes I projectile vomited and soiled the bed.

I begged the nurse to just take the antibiotics off me as I've had trouble with oral ones, eventually the gastro agreed to take me off the antibiotics and with in 24 hrs I never had diarrhoea or sickness again.

The gastro concluded through scans ect I was suffering from reactive colitis, in that something i Ingested reacted with my bowles causing bad inflammation ,and another test confirmed i was also lactose intolerant he also mentioned IBS .

As I said.. I did a food diary for 12 months cutting out dairy and other products, my diet is very bland am I'm very careful about what I eat.

So in conclusion....did the antibiotics cause the colitis 🤷‍♀️

When I was finally diagnosed with hyperthyroidism in 2018 [ which turned out to be graves which is an auto immune condition] I unfortunately develop a lung infection and my gp again prescribed antibiotics...but this time I could mix them up in water drink the contents....God whole mighty...I have never vomited that badly or had that amount of inflammation since my colitis in 2015🤮🤮🤮 gp came back to see me, only I reckon because I was very hyperthyroid and told me to stop the antibiotics immediately [ you don't have to tell me that twice doctor 😡]

He concluded that I just can't stomach antibiotics 🤦

So this is my life....can't stomach certain medication, could not stomach antibiotics, anti thyroid drugs and now 5 years on can't stomach any synthetic thyroid hormone 😢

My lovely son as said he will help me obtain a months supply of natural thyroid medication 😍 but I'm unsure where to start 🙈[ I'm no longer taking any thyroid medication atm] and of course this is not good as I know my TSH will continue to rise .

I was thinking of contacting roseway labs to get the natural thyroid hormone, members have told me about this site, I feel contacting endocrinologists secretary's will be time consuming although i will do that 👍and I'll just become more unwell waiting for replies .

My gp sent me a message yesterday stating she is waiting for the endo report from my consultation on Friday 21st june in it she says.

" I understand you are still having trouble with thyroid hormone replacement, if this is still the case please arrange to phone the appointment line to obtain an appointment" [🤣🤣🤣🤣🤣

you can NEVER and I mean NEVER get an appointment that way , I tried for over 4 weeks then had to contact practice manager and complain 😡

I feel my only recorse is to wait until she receives the report and hopefully she will contact me with the contents, because the endo told me she is recommending I see a specialist endocrinologists who can perhaps deal with this complex issue 👍

I will when I hopefully hear from my gp mention specialists endocrinologists who may pescribe NDT and NP 🙄 although I feel I'll get nowhere with the gp, but what right do I have if the nhs refuse to treat me?

Can I make a complaint if so to who? Because PALs have been no help 😡

Sorry for the long drawn out post...but I'm afraid I'm not a straightforward case like yourself 💖💖