It both angers me and saddens me to do this post๐ก๐ I took ALL my relive paperwork and evidence what synthetic thyroid medication is doing to my body especially my stomach and gut and as some on here will know I've been in this battle since my thyroidectomy in 2019 and being put on an array of synthetic T4, T3 thyroid medication since then.
Although this endo was very pleasant and kind she listened ,looked over the photos of what I'm passing ๐ฉ but ultimately concluded she could not give me nature dessicated thyroid medication ๐ก even after seeing the effects I'm having on it, and my latest blood results [ TSH....69.47] and the last ones done on May 4th some 5wks later at [ 45.66] and knowing again I've had to come off the thyroid medication to give my bowles a rest as I've had constant cramps and diarrhoea.
OK members..I asked her reluctance in prescribing NDT this was her answer...she sited mad cow disease ( CJD) as to why the nhs no longer prescribe ndt ๐คฆโโ๏ธ now I can obviously understand this when mad cow disease was at its hight..but I asked her if this applied today as plenty of people who suffer from thyroid conditions take it , some as I understand do manage to obtain it from specialists [privately or nhs. ]
She then told me I could go down that route, but feels it would be impossible for any nhs endo to prescribe it, and she was very sorry but all she could recommend is I stay on the T4 you have ,as its a small dose 25mic you should be ok ๐โโ๏ธ truly did she just forget what I told her I've suffered tremendously on 25mic for 5 wks for my blood to be done on May 31st, plus 25mic will NEVER make me uthyroid๐ก๐ก๐ก.
I'm astonished that I'm being asked to go down a private route, which I can't afford anyway๐ก
She said she will send a report to my gp stating I am an unusual case and perhaps needs specialist intervention...Well who would I get? She said herself that she doesn't think any endo within the nhs can help me ๐ its going around in circles again.
I'm on no thyroid medication now so my TSH will just increase again.. obviously I'm going to have to buy my own until I try to get this sorted [ natural thyroid medication ] to which several members have given me sites to check out๐ my son is going to help me financially ๐
But that's it back to the drawing board with the nhs๐ก๐ก๐ก๐ก๐ก
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birkie
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Hi slowDragonโค๏ธ Quite honestly this is getting silly now๐ก they have all the evidence of what this medication is doing to me ..awful blood work photos of what I'm passing, obviously no absorption of said medication,
Can I ask slowdragon what is the difference in Armour and ndt ? and as you say ndt on the nhs contains lactose ๐คฆโโ๏ธ bummer]...so by that reckoning they could offer me Armour, as a trial๐คทโโ๏ธ this as you know as now gone back to my gp ,along with the endos report so I'd need to show my gp that evidence of obtaining Amour on prescription.
My brain is fried with the audacity she was ok with me going private, to obtain an endo specialist appointment and to obtain my own thyroid medication [ personally I don't think there are ANY specialist endocrinologists] it's hard enough finding one who knows anything about thyroid conditions ๐
Oh birkie, I'm so sorry, this is such an awful situation for you to be in. ๐ข But I have to ask , what has mad cow disease got to do with NDT which are usually porcine? Is it me being ignorant about something that happened many years ago, or is it her being utterly stupid?
I thought it was pig thyroid to, but bovine thyroid was used at some point I think๐คทโโ๏ธ so maby some fantastic gaslighting going on here eh ๐ but nevertheless this endo as done god knows how many years in this profession and can't help me....money well spent at university studying NOT!!! i couldn't believe she wants me to stay on a medication that obviously doesn't work for me and gives me awful side effects ๐ก๐ก๐ก
Bovine (and ovine) products have not been available for many, many years.
There are glandulars which are bovine - products with indeterminate or zero thyroid hormone consent.
But all prescription-quality desiccated thyroid products - like Armour, Erfa and the others, are porcine.
And they've never had natural infection of a pig (paper dated 2021):
Porcine Prion Protein as a Paradigm of Limited Susceptibility to Prion Strain Propagation
Although experimental transmission of bovine spongiform encephalopathy (BSE) to pigs and transgenic mice expressing pig cellular prion protein (PrPC) (porcine PrP [PoPrP]โTg001) has been described, no natural cases of prion diseases in pig were reported.
Yeah I think this was rather unique gaslighting by that endo๐คฆโโ๏ธ although I will say she was pleasant and professional, but ultimately very unhelpful, when I got home and sat pondering what she said ,I thought so are you trying to say people who are on ndt now are risking contracting CJD? Wow that's scary for an endo to say๐คฏ she clearly as no idear what she's talking about..and that's even scarier ๐
Hi birdie,I had a similar experience with my endocrinologist about dosing and computer says no. When I questioned her decision, I was given a long retort about how many years she had studied to become knowledgeable about thyroid issues, and that other people, including respected experts, plus people on this forum don't know anything!!!!
I told her that I disagree with her, which landed like a lead balloon.
We are left unsupported by the NHS.
My fight goes on.
I, originally, was on T4 only, but regardless of TSH being within limits, I felt progressively worse. Long story short, I am now on T3 only. Very, very slow incremental increases, but better than T4, although far from normal, once again, challenging the so-called accepted parameters used for treatment. No more symptom based treatment.
We are individuals and different but are all treated the same.
I sincerely hope you find a solution to your predicament. In my case, 4 - 6 months between appointments is not helpful either.
Keep trying to find the right course of action for you.
Thank you for your support ๐ฉทYes these endocrinologists act I'm afraid to say ..like gods๐ก
And i know the lead balloon analogy ๐
I have on countless endo appointments...asked why we are treated under the umbrella and not as individuals ๐โโ๏ธ but they can't really tell the honest to goodness truth... that its the nhs way!!
And I concur with T3 although the t3 still gave me gastric issues but it did raise my t3 levels ๐ something t4 never does, but hey..do they care..no they don't ,what happened to the oath they supposedly took when becoming a specialist doctor??
I've found since dealing with these so called professionals that asking questions and disagreeing with them is fruitless as they either just dismiss you [ as in my case the endo actually told me to go find someone else ๐ก] or gaslight you with some crap ,CJD this time on my last appointment ๐คฃ๐คฃ๐คฃ๐คฃ that was novel ๐
Yes we are truly left under treated not treated at all ,and just thrown on the garbage heap.....but if your a diabetic.....its a different story altogether, my friend who's a diabetic gets appointments with endocrinologists and GPS she told me she is treated so well....and she is in the same area as myself uses the same health care system as I do same endocrinologists..you just can't make it up๐ก
I hope this doctor never eats steak or burgers then as she could theoretically catch CJD. However doesn't NDT normally come from pigs ๐ท? Oh dear just showing her ignorance there.
I get that doctors cant be expected to know everything and aren't shy about displaying their lack of knowledge, but its the assumption that we are as ill informed as they are and are expected to meekly accept whatever BS they come out with that annoys me.
Quite frankly I was taken aback when she brought the subject of CJD up..๐คทโโ๏ธ I sat there with my son who also looked confused, I sort of didn't get why she was telling me this ,until I realised they use the animals thyroid for the tablets, but surely that would not apply today and I told her people take ndt today for thyroid conditions and they aren't affected ..silence!!!Again the same old rhetoric " I can't pescribe ndt sorry, just keep taking the t4 you have ๐
CJD - whoโd have thought it! Havenโt heard that before as a reason for not prescribing it!
I just canโt understand why doctors are so determined not to use it yet they are quite willing to tell you you are stressed and prescribe antidepressants or tranquillisers which can be quite addictive, not to mention b a lot of other drugs that probably donโt do you much good.
Good luck with it all, I hope you have some luck if you present her with the information SG has given you.
I even brought up the very fact that ndt was the first medication used to treat thyroid conditions, way before the synthetic version, that's when she went into the mad cow disease story๐Think the only mad cow is this endo..๐
I get that doctors arent confident about prescribing NDT, I understand there are concerns about it being an unregulated medicine in the UK and that variations in batch potency can be a problem.
Doctors dont generally know much about NDT since synthetic T4 was invented. But why not be honest and say that rather than coming out with frankly ludicrous statements like it being due to CJD? Do they believe their own BS or just expect us to?
Probably expect us to believe there BS , but unfortunately there are some of us who learn about our condition, and are way more informed then they are..which infuriates them because i bet a % of people who see these endo just accept what they are told๐คทโโ๏ธ where as we fight for answers, I'm not finished with these idiots..yet..๐
Hi Birkie sorry for your problems. NDT comes from Pigs, just a small detail not Cows she doesn't know her Pigs from her Cows. I am pleased that your son can help you and hope that you get well soon.
Since 1996 all parts of a bovine animal that could possibly carry any risk are discarded. CJD occurs naturally in humans too, although very rare (unless you nip out at night and eat human brains). What next - wearing leather?
Well I did mention 2 things firstly ndt was the first medication used for treating thyroid conditions before synthetic thyroid medication, second I would have thought today that CJD would never apply, as restrictions would be in place to avoid using any tainted products and the thyroid medication would be strictly veted to meet with health standards..although they do put some nasty fillers in them๐คทโโ๏ธ but that being said, I'll give that endo 10/10 for inventive gaslighting ๐๐๐
Was this doctor a diabetes specialist by any chance? Endos tend to be, and then they know next to nothing about thyroid disease and treatment. Years ago, I saw an endo who claimed that liothyronine is an illegal controlled substance because body builders use itโฆ
There are bovine thyroid glandulars sold as supplements. There are members here who use them successfully. Most adrenal glandulars are bovine. I have never heard of anyone ending up with CDJ after taking them. All the brands I know of source their raw material from BSE-free countries such as Argentina and New Zealand.
I'm laughing at the endo who told you bodybuilders use t3 and its very dangerous ๐ because that's what one endocrinologist also told me๐ก, also said it can be abused in weight loss๐ fgs endo I'm not using t3 or t4 for bodybuilding or weight loss...I have no thyroid ๐ and need a thyroid medication that doesn't give me bad side effects ๐คฆโโ๏ธ.Obviously this endo was using some unique gaslighting here๐๐๐๐
But thank goodness my son was with me at the appointment he was my witness to what she said about CJD๐
Sorry forgot to say......."YES ALL THE FLIPPIN ENDOCRINOLOGISTS IVE SEEN ARE FORMOST DIABETES SPECIALISTS"because that's who GPS refer you to...[nhs endocrinologists] I find myself scanning every letter I receive for an endo appointment..and BANG!! There it is tucked up in the top right or left ,the name of the endocrinologist then a jumble of letters PhD ect then SPECIALISTS IN DIABETES and endocrinine ๐๐๐ when I see that my heart always sinks now because I inevitably know the out come...frankly I sometimes wish my blood work would come back as diabetic just to see the difference in how I'd be treated ..harsh thinking I know..๐
Mad cow disease? To the best of my knowledge NDT is made from pig's thyroid. Pigs are not and have never been cows, what an uninformed invented excuse. If that's the level of her knowledge she's clearly not qualified to treat thyroid related disorders. I think you are going to have to move on and self medicate. It's totally unforgivable to put a sick person in this position.
๐๐๐๐๐Thank god my son was with me tattybogle , I actually messaged him to confirm she actually said this..๐ he said yes mam , but why would she bring that up as an excuse for not prescribing NDT...๐คทโโ๏ธ I think these kinds of endocrinologists need reporting for sure.๐ก
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Thoughts on my latest endo appointment 
Endo appointment tomorrow.
Endo appointment - the butterfly
