Update on visit to gp🙈

[birkie]

Hi everyone ❤️

Update on visit to gp yesterday, firstly I will say she was one of the most down to earth gps I've ever seen👍 she had all my information to hand, she'd obviously done her homework which is rare with some , if not all gps today.

I took my roseway information and tablets [ NDT] with me , she started with my awful TSH range of 45.66 taken on May 31st and asked how I was feeling as this range coupled with my very low T4, T3 would surely be making me feel awful, she asked how long I'd been without my thyroid medication and I told her I'd taken intermittent medication for the last 5 years not being able to stop on it for a continuous time due to the gastric issues.

I also told her I'd tried the T4 again in July after being off it for around 3 weeks to again let my bowles settle from the constant diarrhoea cramping ect, my last tablet was taken on July 6th , but I had to instill my plight that I'd not been able in 5 years to remain on a steady dose of thyroid hormone , I then told her about the NDT my son purchase for me through roseway labs and that I'd been on this for 20 days without any gastric issues or any other issues I encountered using the synthetic version.

She went on about my diagnosis of reactive colitis and lactose intolerance saying "had i ever been given anything to counter it"🤔 my answer "only buscopan IBS tablets by my gp" she told me they were of little use in treating colitis 🤷‍♀️...ok then..why the hell did my then gp pescribe them?

Now this is where it gets scary🤯 because her solution is...I take lactate enzymes tabs from boots and peppermint oil or peppermint tea before I take the synthetic thyroid medication.

She as advertised I go back on t4 synthetic version and try this for a month😞 to say I'm 💩 scared to do this is putting it mildly 😔 .....so she wants me to put MORE stuff in my stomach before i take the t4.

I refused the T4 saying if this was my only option then I'd rather go back on T3 , at least T3 restored my T3 to an OK level something T4 never did, and again although she was a lovely gp I'm afraid like most they know nothing about thyroid conditions, she asked me why I wanted to go back on T3? as I told her T4 never gave me a good T3 level, I explained about T4 going into the cell and coming out as T3 , T3 being the hormone that counts the most, she looked perplexed and said no its TSH that we measure, the Ts really dont have much reference [ THE OLD TSH PLOY] .

So if I do this little experiment [ and firstly I'll need to go buy a Guinea-pig cage😂] I've to see yet another endocrinologist in order to get the T3, eventhough I've been pescribed it before 🙄🙄 Ho lord🙏.

She did as I expected said "no endocrinologists she knows will pescribe NDT as its not licensed" [ no 💩 sherlock] but did take the details of one I'd acquired from a member, but she is not asking for an appointment only if he will pescribe it , so my next question to her.." if I do this and it doesn't work what then"?

'Well we may need to look further into what we can do then, maby putting you on another form of thyroid hormone 🙄 now I know she as given me this supposed solution because her hands are tied by the nhs rules, and I know I will no doubt have to try it😔 but at no point did she say " if this fails then we will need to fight to get you on NDT so I'm sceptical about this experiment.

One good thing that came out of it is she is willing for me to have my thyroid bloods done with the surgery and said you shouldn't have to pay for them...win there even if its a small one👍

[1tuppence]

Well birkie, the choice is entirely yours.....your body, your health and your state of mind.

It's good that you feel as you do about her "down to earth" and her having done her "homework".

Feeling so much better on NDT I'd be incredibly against any experiment ....especially one I already know does not suit me.

NDT and NHS do not seem to fit together anymore, despite it being the treatment for so may years before big pharma saw an opportunity for a gold mine.

I do so wish you well, birkie.

[birkie in reply to 1tuppence]

Thank you for those kind words tuppence ❤️

Yes it is absolutely my choice, I'm already having kittens thinking about juggling the lactate enzymes and peppermint stuff before taking my thyroid medication 🫣.

But I did ask this gp why NDT was discontinued

Because it was never licensed was her reply...i think it was helvella who mentioned about NDT never being licensed also👍

Of course, the few little grey cells I have left started to ponder about when NDT became available for human consumption [ and I'm sure some members will know when that was❤️]

In the time it was fit for human consumption [date to be inserted 😀] how were patients monitored?

One other thing the gp mentioned was" it is a very unstable drug which needs careful monitoring"

I assume blood work was the litmus test ,or just plain examination of the patient 🤷‍♀️

So....because it was unstable did this mean some patients died taking natural desiccated thyroid? [Pig thyroid]

Or did it not render them uthyroid? ...what's the story here?

I'm taking NDT like many of us who have thyroid conditions...should I be worried?...NO I don't think I should!! , I'd like to see the evidence of it being unstable for human consumption by the nhs , both T4 and T3 need careful monitoring , so I don't see the argument for not supplying it through the nhs😡

Of course if we're talking about cost cutting...Well I think that's the true story here👍

[Sparklingsunshine in reply to birkie]

The thing is there are meds which are used " off label". I have taken several myself. Drugs being repurposed to treat something other than what they were invented for. It happens all the time.

During covid seriously ill patients with covid were given Dexamethasone, an old tried and trusted immunosuppressant, with good results. In fact the UK had a world leading research unit looking at whether established drugs could be repurposed to treat other conditions, including Covid. Obviously this was before vaccines were developed.

It really boils down to whether the prescriber is willing to take the responsibility for the drug being used for something it was not intended to treat. Ironically NDT was invented to treat Hypothyroidism. Which makes your situation even more daft.

[crystalcat10]

excuse the pun , but what an absolute 💩 show this whole carry on is , i have no idea how you have the will to fight as you do , but hold on . you are inspiring me because I'm just about giving up .

[birkie in reply to crystalcat10]

Never give up..never surrender 🥊when you're health is involved ❤️

Believe me.. I have several times be so low , bad thoughts of taking my own life ect, but this site as made me fight🥊the nhs was set up to care for us, although today that is very far from the truth...so fight we must!! as unfortunate as that sounds many have no choice..because the nhs give us no choice.

Many years ago gps we're like policeman, you respected them, trusted them you wouldn't think of challenging them , well that was my experience growing up, and I suppose even back then some gps were awful.. but it's a struggle when you already feel ill , but I won't let the sods get me down...no way🥊🥊🥊🥊

[Rapunzel in reply to birkie]

it's a struggle when you already feel ill , but I won't let the sods get me down...no way🥊🥊🥊🥊

Feck 'em, birkie. Even your latest gp is half-baked. 5 years of gastric issues? Go your own way. I think 5 years of suffering is enough and your compassionate son may be responsible for you turning a corner in your journey. Very best to you 🤗

[tattybogle]

Mmm..... well at least this one seems to have spent some time thinking about the problem.( but the 'TSH only' alarm bell is a bit worrying)

i just googled peppermint oil / reactive colitis... it does seem it might be worth a try (ridiculous that it's taken GP's this long to register that it would be intelligent to try to address your colitis issues) .... and NHS apparently can prescribe peppermint oil capsules.

and yes the lactase enzyme idea also seems logical.

i can totally understand you reluctance to play guinea pig again.... and it's frankly appalling that it has taken them until this point to suggest such simple idea's for preventing colitis interfering with you taking your thyroid replacement ....

however ... they can't attempt to find a way to get NDT for you on the NHS unless they can demonstrate that there is no other solution available for the problem of colitis preventing you from taking levo / or T3.

So if you want them to look for a way to get compounded NDT funded for you on the basis that you can't tolerate anything else, they will have to demonstrate to the CCG/ or whoever that they have tried everything else first and it didn't work.

probably doesn't make much difference whether you try this experiment with levo or T3. either way, you would soon know if it doesn't help the colitis symptoms .

if it does solve the problem ~ great ~ you could be able to use levo , (or levo / T3) without it causing problems which will save you a load of hassle going forwards.

and if it doesn't make any difference ~ great ~ you have just demonstrated that peppermint oil / lactase enzymes don't solve the colitis problem and this strengthens their case to get the NDT prescribed/ funded on nhs , because it's (so far) the only thing that doesn't cause gut issues.

.... so put up with 4 wks being a guinea pig , see what happens , and then you can then go back to buying it from roseway until they come up with another idea.

(obviously you may end up hospitalised from starvation / hypothermia cos then you won't be able to afford to any food/ heating this winter .... so it's a 'sub optimal' outcome ... sorry couldn't resist .. i know it's really NOT funny at all )

sorry... waffling now, so will shut up

[birkie in reply to tattybogle]

🤣🤣🤣🤣🤣 omg you made me laugh, I've again be pondering and worrying about trying this experiment, I've been wracking my brains to think of a way to fund the roseway medication [ndt] and yes i have visions of me sitting at home some family member finding me frozen to death taking my NDT 🤣🤣🤣.

I've applied for travel expenses to and from my appointments in Liverpool and Carlisle which I actually didn't know I could do , if I get it back it should pay for 2 months supply of ndt.. so i feel a wee bit relieved by that🙌

But yes I'm going to have to change in to my Guinea-pig costume and do the experiment 🦛😂😂

[Sparklingsunshine in reply to birkie]

What about going on OnlyFans Birkie lol. Or joking aside what about crowd funding. People basically appeal for kind hearted and generous members of the public to help them pay for stuff they cant afford. I've seen it used a lot for health, often treatments the NHS wont pay for or experimental treatments only available abroad.

[birkie in reply to Sparklingsunshine]

My friends looked into go fund me , but I had to inform universal credit and were informed any monies collected for you could count as income 🙄🙄🙄 it was a grey area🤷‍♀️ in the end my friends who 4 of them work within the nhs decided it was probably a bit risky so it was abandoned 🤷‍♀️

[Sparklingsunshine in reply to birkie]

I know its a long shot but what about going to the press and making a big hooha about how the NHS is treating you and denying you essential medication. The bad publicity might make them change their minds.

[arTistapple in reply to tattybogle]

Tattybogle I totally get where you are coming from on this. However Birkie has already been through very many ‘provings’. If this does not work, will there be another ‘test’ for her? I can’t help thinking (cost aside) that if I found something worked after what she has been through I would want to stick with it. OR maybe it’s because I am at a similar junction, I have this view. Which is the straw that will break the camel’s back?

Oh birkie I feel for you, whatever you decide. You know you have all our backing but you are the one having to deal with any consequences.

Another thing colitis is a very bad situation, it’s not something that should be dealt with lightly. As you say where has the treatment from her Gp been all this time? What a devil of a mess?

[birkie in reply to arTistapple]

As some members have said I think I should go with the experiment 🙈 much to my dismay certainty not looking forward to it tho, but at least I'll know within 4/5 days if its working or not 😮‍💨 my only worry is as you mentioned...this gp as not actually said if this doesn't work we will find a way to get you on NTD🤷‍♀️ she just said we can try another thyroid medication, that sounds like I'm never gona get out that Guinea-pig cage.

I'm not prepared to go through that chopping and changing thyroid medication...how long could that take??

5 years and counting now😡

[arTistapple in reply to birkie]

Entirely get you. My issues are heart issues. I think heart issues make people especially nervous. I had to come off the heart forum because of that. However I see you suffering similarly with your gut issues and I am extremely unhappy and disgusted by these medics we must allow to ‘help’ us.

They just don’t get that we are the important focus of their work. Not their codes of conduct (lacking), their special knowledge(also often lacking), their politics small and large Ps. I am fed up with the lot of them.

[birkie in reply to arTistapple]

Aye Aye to that👍...I'm with you ...gone are the days when gps actually cared for patients, they think more about money now😡😡

[tattybogle in reply to arTistapple]

well yes i totally agree it would be much better to just stick with something that seems to be working without issue so far.... but it's not sustainable to keep buying it privately .

If NHS are to be reluctantly forced into paying for something so politically explosive as compounded NDT (or armour/ other NDT's which haven't been tried yet) then realistically the NHS 'hoops' will have to be jumped through first ~ whether it's fair or not ~ and yes ... there will probably then be another hoop and probably another hoop after that , yes it's not fair or sensible .... but collecting evidence that all other potential solutions have been tried and failed is the only way there is any chance at all they will ever agree to pay for it.

she could refuse to try this .... and they could carry on as they have so far ,,, basically saying "we don't think this patient has a real issue with colitis (or anything else) she just has a long history of refusing to take the medications needed for her thyroid treatment .... so~ have some levo , or bugger off and die quietly , your choice "

in my opinion the key to getting NHS to pay for NDT is for Birkie to build a stronger more evidence based case for her colitis problems than she currently has . eg NHS arrange for her to take levo before endoscopy to prove it results in colitis. that sort of thing.. actual proof.

Yes it stinks , and even if they do agree to prescribe some form of NDT ... it's patently obvious from Waveylines and Yoginidancer's recent experiences that they will be trying to remove it at the first opportunity they get.

So ending up in a position where she's reliant on NHS for NDT is going to be very insecure indeed... for those not in a financial position to fund NDT privately, it is going to be better/ more secure to find a way to make Levo / T3 work if at all possible .

[birkie in reply to tattybogle]

Can I jump in here tattybogle, I have presented proof both photographic and bowle scans whilst on thyroid medication, my endo even wrote a report to my gp saying ....After looking at Karen's scans and evidence, she is having server diarrhoea and inflammation in both large and small intestines I conclude it is the thyroid medication she is taking that is causing her reactive colitis to flare up, I therefore recommend she discontinue the thyroid medication in favour of a more natural form.

Now my gp read his letter back to me , personally I think that was all that I'd need for me to have ntd , and she did admit the thyroid medication was the cause, but because this gastro as not pescribed anything [ he told me he couldn't ] She as suggested this experiment pushing aside the gastros recommendation 🤷‍♀️

[tattybogle in reply to birkie]

well that's a very good start ... but they could argue it's just one guys opinion from a long while ago .

eg. how long ago is was this endocsopy report from ,and was it from when taking levo or from carbimazole ?

and have you got anything else in writing evidencing colitis from any other occasion ?

unfortunately i 'm assuming your own photo's of poo (i cant spell diorhoea) won't count for much.... if they don't believe a word you say , they probably think it's not even your poo.

you will have to have lots of strong evidence if you want to use this reason to force them to prescribe NDT

[birkie in reply to tattybogle]

I've shown the specialists the photos and dates, the colonoscopy was from 2022 , I have the hospital admission and discharge from my diagnosis of reactive colitis in 2015, it was this gastro who suggested I do a food dairy , which I did , he also got me tested for allergies the only one that showed was lactose and he wrote to my gp informing him of my diagnosis 🤷‍♀️

[tattybogle in reply to birkie]

Did the 2022 colonoscopy say anything abnormal seen ?

When was that one done where they saw your bowel was all red and swollen up inside ?

im asking cos they obviously aren't dealing with you as a proper colitis patient ie. it's not being investigated under gastroenterologist on NHS . and the colitis issue seem to be key to getting them to cough up for compounded NDT.

is 'reactive' colitis an accepted NHS diagnosis of an ongoing condition ,, or just their description of an event that happened once ?

so either~ get all you gastroenterology evidence together in an easy to see form .. and push them for a clear explanation of why your gut issues are not being dealt with by an NHS gastroenterologist.

or ~ tell em to sod off and just rob a bank... we'll all help with the getaway .

[birkie in reply to tattybogle]

I had the 2022 endoscopy because of the photos I showed the gp I'd started synthetic thyroid medication in 2019 tried several forms as your aware, the gp after seeing the photos said she'd need to request I have a colonoscopy to rule out cancer🙄 as I told her at the time I don't have cancer my bowles are reacting to the synthetic thyroid medication.

Now here's the other problem I'd stopped the thyroid meds a couple of days before I had to take that disgusting salt stuff to make you empty your bowles 🤢 as the thyroid medication was bad enough..giving me diarrhoea already, the scan showed no cancer [ yes I know] but did say irritation seen, but as the endo said reactive colitis will flare up when eating or drinking anything your bowles don't agree with.

That's why on day one I don't have any problems taking it ..its day 4/5 I notice the inflammation pain cramps, bloating then diarrhoea .

I have to also mention tattybogle I wholeheartedly agree with you in the fact my reactive colitis as never been dealt with adequately, in hospital in 2015 the gastro showed all my scans ect to a specialist in Newcastle, he informed my gastro I had reactive colitis and recommended a tablet for prevention of any flare ups.

He duly sent the report to my gp, he put me on 4 month supply of steroids and told me to see my gp about the tablets for prevention, I saw my gp who did the prescription, he gave me buscopan, although I'm pretty sure that was not the medication the gastro recommended, I questioned him about the medication and he just said " they do the same job" and that was that no other intervention and in 2016 I started with what I now know was thyroid issues being diagnosed in 2018 hyperthyroidism then 2019 graves.

It's all a big b####y mess tattybogle 😡

[tattybogle in reply to birkie]

what a shame you stopped taking the levo a couple of days before taking the prep and having colonoscopy done .

the irritation might have shown up as more of a significant problem if you'd continued to take it .

i suspect 'irritation' will not really cut it as evidence.

they probably want to see bleeding ulcers.....

but i do think pushing on the gastro 'door' is the key to moving this problem forwards.

[birkie in reply to tattybogle]

Well there is evidence of blood form both ends🙈 but I took hold of the situation and did the food diary, which worked I eliminated a lot of food which flared my colitis up especially cheese [ and I loved cheese 😢] that was good until I got the anti thyroid drugs and now the synthetic thyroid stuff.If I don't take the synthetic stuff everything goes gastric wise..go back on the synthetic stuff and it all comes back..it would be the equivalent to me eating red Leicester on toast having the gastric effect, then not having it again same thing I put the synthetic stuff it in my stomach get the effect .

But I can do without cheese on toast..can't do without some form of thyroid medication tho ,..it's a funny illness in that when I was not taking it I had no gastric problems all calm down there if you get my drift...then I take the stuff and within days it's blowing a flipping hurricane with rivers of mud.

20 days on the roseway ndt and it's all calm down there👍

Flipping heaven ..I don't want to leave😭..but yes gastro will need to be more involved if this experiment doesn't work

[tattybogle in reply to birkie]

how about " i'll be a guinea pig and try taking these before levo (even though i currently feel ok and doing this may well make me unwell again) but only if you will agree that if problem comes back you can promise me YOU will arrange for gastro to look at my bowels WHILE I'm STILL TAKING IT so we can get to the bottom of the problem "

[Wua13262348 in reply to birkie]

Please explain this situation to your M.P. as soon as possible, Birkie, and see if he can put pressure on the relevant government minister with power over your Health Authority to get you compounded NDT. It may be a good idea to have your son there with you to back you up when you speak to him.

Under no circumstances would I go along with your g.p.'s current plan. I would say you have tried everything re. your bowel dilemma including all her suggestions, present and future. You have just remembered , that you have tried peppermint capsules, peppermint tea, and lactose enzymes, digestive enzymes and everything ever suggested that might help your problem , to no avail. You probably have, anyway.

They have enough proof of your digestive issues already. I have had no bowel control since 1995 and it took 2 years for any investigations that were done. I have never had a colonoscopy, only a sigmoidoscopy, which is a much lesser test. I did the exclusion diet for all the food groups per the NHS dietician and it was hell on earth, and useless (1997). Gastroenterologists think amitriptyline is the answer to IBS and bowel problems. IBS is just an umbrella term for, "you have a problem but we have no idea what causes it and how to fix it." The cause of your bowel problems will be genetic, metabolic enzyme deficiences ,like me. Once your bowel starts to react it can be an ongoing problem for an extended length of time and does not necessarily stop when the offending substance is no longer consumed. You will never satisfy your G.P. and she is sending you on a fool's errand that will have no end. You will have indefinite waits for years on end to see consultants and be sent round and round in what will just be a 3- ringed circus.

You have compounded NDT which suits you and is really nothing short of a miracle where you are concerned. Someone in Government has to fight your battle for you. You must speak to your M.P. in the first instance.

I know you say you get PIP disability payments. There is talk that the current government may change how PIP will be paid in future. There is talk it may be changed to a voucher system or lump sum which you must spend on medical or disability aids or that it must be spent "medically". If this happens it will not be in the short term. It MIGHT be the case that spending your PIP on NDT from Roseway could be acceptable in the future. You would not have the available money from PIP that you rely on at the moment for day to day living, which would be a problem for you until you reach 66 years old. You have about 4 years until you get your pension, and are likely to be much better off financially then depending on your own personal circumstances. If you will get a full state pension you may be able to fund your own Roseway NDT if forced to, if you can't get the NHS to provide it. I think your PIP continues after retirement age at 66 and you would have this as well as a pension . Your son needs his money for a mortgage, I know. BUT, if it was for 4 years only, until you reached pension age, for what is an absolute necessity for you????? It could be understood that he could skip future birthday, mother's day and Xmas presents for you to partially fund it? It would be the best present he could ever give you.

Since T3 is super cheap in Turkey, Greece etc., does anyone know if there are compounding labs in these countries who could supply equally cheap compounded NDT?

[birkie in reply to tattybogle]

Sorry fgot to say I had the first diagnosis of reactive colitis in 2015, my bowles were servery swollen and inflamed with bloody mucus [ I was vomiting blood and passing blood] emergency scan] .The next bad flare up was in 2019 when I was rushed into hospital servery hyperthyroid I'd been telling my gp I couldn't stomach the anti thyroid drug both ptu/ cabiz. He just told me to continue on them, in hospital I was given 6 small white tables [ no idea what they were told to take them immediately after ingestion I threw up and soiled the bed diarrhoea it was like a mud bath..I was so embarrassed I then went into shock ..it was like a scene out of the exorcist they scrambled to get me off the ward, and I was given an injection.

I woke several hours later and asked.." what the hell was I given" PTU anti thyroid medication 😡 I was in real pain in my stomach and bowels, I showed the nurse my stomach she got the doctor and the next thing I know I'm down for an emergency scan...again bowles inflamed, pus ect , but the length of bowel involved is suspicious , possible lymphoma that's what the report said...so off again for colonoscopy ...what a wonderful gentleman doing the procedure cutting it short he said lady something you have ingested as caused this....yeah I say ANTI THYROID MEDICATION 😡 he brings me back 7 days later and second scan showed bowles have returned to normal , no lymphoma, but he took some bowel tissue to test that came back clear for cancer.

He totally agreed the anti thyroid medication was the cause👍

Sorry for bombarding you with this tattybogle it's a mess🤷‍♀️

[arTistapple in reply to tattybogle]

You are not wrong tattybogle. I think the same about self medicating T3. How are we ever to get the medics to wake up/change their minds/be educated in the use of T3 if so many of us are literally doing it behind closed doors. This behaviour (whilst perfectly understandable) makes no difference to the overall public picture of the treatment of hypothyroidism. It’s clandestine and I don’t think there will be many of us who would rather keep this up than air it publicly. We want help we can’t get and that is totally wrong in a so-called modern culture. It’s archaic.

We actually want much better treatment and to get that …..

[birkie in reply to arTistapple]

I agree with you Tistapple, this is one reason why I want this in the open, it would be easy for me if my son just continued to pay for the ndt, but he is saving for a mortgage deposit! and its not fair .

For a start the nhs would then get away with not funding my thyroid medication, letting them off the hook as it we're , I know there are some concerns with dubious web sites that sell thyroid medication that may not be all it seems, which can be dangerous to take ,cut with other substances

but if like myself your desperate because the nhs won't pescribe it and you are trying to afford this medication then you may unwittingly use one of these sites this could be detrimental to your health.

The gp I spoke to was very glad I brought the medication down for her to see she actually took it to someone within the surgery for clarity of who supplied it to me.

But do they not realise just how many of us fund our own thyroid medication?

Do they know if we are obtaining the correct thyroid medication we need by buying it from foreign sites?

This is a game of Russian roulette, although I know plenty members do well on there medication and are very careful where they obtain it from, the nhs should sit up and take notice of this situation.

I will be writing to my MP about the appalling way in which we are treated as thyroid sufferers trying to obtain the correct medication we need👍

[arTistapple in reply to birkie]

I hope you do. I am still in ‘flux’ about what to do next. If whatever happens/is decided I fully intend to go as public as I can. I am so angry (and deflated) at the moment.

[Sparklingsunshine in reply to birkie]

I can see both sides, yes it would be wonderful if we could force the NHS to fund the thyroid meds we need, whether it T3 NDT or a combi, and yes I can certainly see that we are shooting ourselves in the foot in a way when we let them off the hook, and go private or self source and whilst enough of us are doing that nothing will change.

On the other hand the NHS is so entrenched in its views, so bureaucratic, so full of red tape. Everything moves at a glacial pace, and we are also dealing, I'm sorry to say, with the massive egos of some very arrogant people, ie Endos and GP's. Not all of them obviously. But enough, who already think hypos who dont get on with Levo are hysterical attention seeking women.

In the meantime we have people on forums like this, normal everyday people unlucky enough to be struck down with a poorly treated chronic illness, mostly but not exclusively women. People with jobs, families, mortgages, rents, caring responsibilities, people who would like to be able to live their live in the best health they can thank you very much.

And if those people cant work, look after their kids or poorly family members, cant pay their mortgage, cant have any quality of life then its really no wonder that they go outside the NHS.

I admire people who take a moral stance on this , I really do and all power to them, but its simply not an option for everyone. Life is precious but its also finite and waiting for a very relcalcitrant NHS to see the light and provide us with what we need, well frankly we are going to be waiting a very long time. Time many simply dont have.

Just for the record I self source my T3, I could have gone down the NHS Endo route maybe, my CCG are one of the better areas for funding T3 but frankly I couldnt be bothered.

One because of long waits and no guarantees that I would get a referral or T3 would be prescribed and two I didnt want to be dependant on a TSH obsessed Endo to dole out the T3 begrudingly, probably not enough to make much difference. And then get on the thyroid meds merry go round of dose changes, trying to get TSH into range.

I'm aware I'm probably not helping the cause by self sourcing but everyone, ultimately, has to do the best they can for themselves and their situation. Since having Fibro and other issues one thing I have learnt is you are really on your own and there's virtually no help from the NHS if you dont fit their tick boxes.

[Regenallotment Ambassador in reply to Sparklingsunshine]

👏👏👏👏 bravo 👏👏👏👏

[HealthStarDust]

I do not know if this will help, but I have read that others have used additional medicines to help take their thyroid replacement with success.

Good luck. It’s a shame it has to be this way.

[Regenallotment Ambassador]

Blimey, on the one hand a good appointment as she wants to help, on the other you have to jump through hoops on fire to get it 🤦🏽‍♀️

Lactase enzyme made me feel awful, try one while you are on the NDT and see. I couldn’t take them. Turns out my lactose reaction is more of a dairy protein/casein allergy and those enzymes don’t help me. Some lactase enzymes contain gluten too… not sure if you are GF but it might affect you too.

You are a trooper I’m not sure I’d be willing to go through another 4 weeks just to prove the state of my guts on T4, especially if the next step is getting NDT… I’d want to skip that part. Especially as you’ve done well in it from Roseway.

🌱

[birkie in reply to Regenallotment]

I'm actually lactose intolerant and I have no dairy, I don't eat wheat or rice or pasta, when she mentioned the lactate enzymes I thought..omg more stuff for my stomach and intestines to try🙄 my bowles are very sensitive personally I don't think it will work, but needs must👹 but as I said in a post..if this doesn't work the gp as given me no indication she will recommend I be put on ndt, she just told me ...we can try another thyroid medication 😡 sounds like the merry-go-round again😡

[Sparklingsunshine in reply to birkie]

The thing is when Hypo there are only 3 options, Levo, NDT and T3, or a combination. Our treatment options are very limited. If you have side effects from a painkiller or BP med then there are usually plenty more to choose from.

I've had similar issues with anti migraine meds ( tried 7, all from different types) and Fibro meds, I've tried all the NHS ones and had horrible side effects. So now I get my own Low Dose Naltrexone privately. Now my struggle with medication is frustrating and annoying, its left me to cope with a lot of pain on my own, apart from otc painkillers.

It pales against your thyroid battles. You need to find a thyroid med you can tolerate in order to live and function. I really dont understand the NHS. They dont seem to realise that leaving you untreated could cost them a lot more in the long run when you start needing more treatment for complications from thyroid disease.

[arTistapple]

birkie this has proved to be a particularly interesting thread. Exciting and sobering. No doubt many of us will be continuing to watch and hoping for the best for you!