OK just spoke to gp reception about my T3 being re installed because endo does not want to deal with me! 😠

[birkie]

Hi everyone ❤️

So I've just spoke to gp reception about me calling in to get my T3 prescription, but we're told it had been stopped, this was Friday last week, I explained I had around 4 /5days left.

I also explained the endo did not want to deal with me and said she would only prescribe T4, which definitely didn't suit me as this T3 is not (having gut issues on both) it was this endo who took me off the T4 and put me on T3, unfortunately she can't see the bigger picture that no matter what she puts me on the gut issues will remain, the malabsorbtion will remain.

She then informed me to find another endocrinologist and as put me back to gp.

OK that's the story so far.

So I ring today desparate now, as I'm only taking the 10 micrograms the last few days to try to spread it out until I can get the T3 Script (my last bloods were (TSH.. 11.58....T3..4.7) said on report hypo again see endocrinologist which I did on Dec 27th🤦‍♀️

I call today and reiterate my dilemma in only now having 2 days T3 left,.. is the gp doing the T3 script?

Reply from receptionist.. "I'll try to convey this to the gp" I said "but I told you on Friday about this"

"just leave it with me"

I've just received an e mail from the gp in question, bear in mind she know the situation, I have 2 days T3 left.. It reads

"i am awaiting a letter from the endocrinologist on you appointment, I cannot prescribe any thyroid medication until I see what the letter contains" 🤦‍♀️🤦‍♀️ fgs the endo told me she will not prescribe T3 and only prescribe T4 which I declined.

I rang back immediately after receiving the e mail to be told by reception there is nothing that can be done until the letter arrives, I asked to speak to the gp.. Refused.. I asked if it was OK for me to be left without thyroid medication? As I have no thyroid.

She spoke to the gp who passed the message on "yes it's fine" 😳 I then asked" if I'm already hypo it's OK not to have any thyroid hormones in my system " yes gp says its OK we are not braking any nhs rules"

So I just said "so your refusing me treatment when I clearly need the thyroid medication? "

"No you just have to wait till the letter arrives and the gp looks over it" 🤦‍♀️ god give me strength 🙏

How do I sort this... Because I'm just about done with this stupid surgery and the stupid rules surrounding it😩😩😩😩😩

[humanbean]

I would be tempted to ask these doctors you've been seeing if they know anything about myxedema coma (also known as myxedema crisis), because their refusal to treat makes it likely that you will suffer this. And point out that it has a 50% fatality rate.

en.wikipedia.org/wiki/Myxed...

I don't think I've ever read of doctors being quite this incompetent and sadistic before in relation to thyroid.

[birkie in reply to humanbean]

Thank you humanbean, I'm beginning to think these gps just want me to die.. How the hell can a fully qualified GP make that decision 🤷‍♀️ knowing I'm on T3 which is fast acting, but also leaves the body fast to.I've had no real response as to when the gp will receive this letter from the endocrinologist, I've just to wait, receptionist never handed key details to the gp which I pointed out.. The endo as asked me to look for another endo and she will only prescribe T4 which I refused.

So this bloody letter will say sod all😠 only to put me back on T4 which I again will refuse.

So the process starts all over again, in the meantime I have no thyroid medication 😠😠😠

[Forestgarden]

Its passing the buck and not wanting to take responsibility. I had a similar situation where I fell through the cracks and couldn't get anyone to deal with me a few years ago. Was on carbim at time for hyper, endo took me off it to see if my thyroid would behave. I was ok for a couple months, but then RAPIDLY went hyper again. Rang gp, reception arranged blood test, waited 10 days for results, nobody phoned me despite coming back with ft4 at 80. I phoned up, couldn't get appt to speak to gp, couldn't get receptionist to understand urgency. Receptionist told me my results on xmas eve! Weight was dropping off me daily, heart was awful. Lost 10kg in a matter of weeks. After xmas, finally managed to speak to gp whi said couldn't prescribe me carbim without speaking to endo. I waited again, no response for more than a week. I finally remembered the endo had given me direct phone number for his secretary, so I phoned directly and explained the urgency. The secretary understood, and I had my prescription the next day, but, bloody hell, the stress. All I can suggest is either camp out in your gps reception, or try phoning your endo department directly

[birkie in reply to Forestgarden]

Thanks for your reply❤️

And I know what you must have felt like being hyper, my gp left me with hyperthyroidism for over a year saying it was my menupausal state, I lost my thyroid in 2019 to graves thyrotoxicosis, I lost around 3 and a half stone and I was very under weight, but gp congratulated me on the weight loss, I also had a raging appetite, until I went thyrotoxicosis and vomited everyday and went into thyroid storm .

They have no idea what there doing, and leave urgent things to receptionists, who have clearly no understanding of conditions 🤦‍♀️

I left the receptionist with this little ditty.... WHEN I RUN OUT OF THYROID MEDICATION IN 2 DAYS I WILL MAKE MY WAY TO A&E!!

I'm now on my laptop composing a letter of complaint to the practice manager, then doing an e mail to PALs but I'm unsure if you can complain to PALs about a gps failings, maby just about the fact she is leaving me without thyroid medication 🤷‍♀️

[SlowDragon Administrator in reply to birkie]

Which brand T3 are you currently taking

How much should you be taking

[birkie in reply to SlowDragon]

As I said slowdragon it's the Roma T3, but as you will know it's still causing gut issues my last TSH was 11.58..report... Hypothyroid again see endocrinologist which I did as urgent referral.But she only suggested T4 AGAIN 😩 I refused

I don't like the T4 or T3 both have not worked for me, but can I just go cold turkey until the gp receives the endo report?

[SlowDragon Administrator in reply to birkie]

but can I just go cold turkey until the gp receives the endo report?

Absolutely not

But GP and endo will say they have offered you Levothyroxine and you have declined

Ideally you want to try Armour I know

Suggest you contact Roseway Labs for private prescription of Roma for now

And get consider trying Armour asap

[waveylines]

I'm so sorry this has happened to you. They are incompetant and are hiding behind an endos letter. What should be happening is a continuation of the treatment that's been previously recommended until they have heard back. It's not normal to stop treatment until you hear! Complain to PALS. Have you tried approaching the pharmacist and seeing if they can give you an emergency supply.

You can also complain to the Care Quality Comission. Who can investigate. It won't help you now.

It's not worth jeapodising your health no matter how wrong they are. You are the one being harmed. You will have to buy private and then fight them. They will make you ill otherwise.

Their argument will be that you can have levothyroxine but you have declined it so I fear this is how they will justify themselves.

If you can move GP Practise ASAP. The next lot can't be worse than your current one!!

[birkie in reply to waveylines]

Thanks waveylines, there is a reason I declined the T4 as I've told them and shown them photographic evidence of what I'm passing, the cramps, pain and inflammation and diarrhoea.Why would a competent specialist put you back on a medication that is A, never going to work, tried it twice now through this incompetent endo

2, it's never going to make me euthyroid due to absorbtion problems

3,its waisting my time and there's

I aliken it to someone who has an allergic reaction to peanuts, you would never prescribe a medication that had peanut extract in it, by that I mean if the patient did badly on the medication, and you the specialist took that patient off said medication you wouldn't put that patient back on it because you knew the last two times it didn't work.

So I think I was correct in refusing to go back on a medication that is clearly no good for my thyroid condition.

Now that all sound correct and any competent specialist would recognise this.... But I'm dealing with an nhs gp and endo... So competent goes out the window🤦‍♀️🤦‍♀️

I did say to the receptionist, who by the way would not let me speak to the gp, they have far to much power😠 I would present myself at A&E if I'm without thyroid medication after 3 days... And I will👍

[waveylines in reply to birkie]

You need a second opinion Birkie..... Am afraid zI don't agree that your Endo is competent at all!Pick very very carefully who that second opinion doctor is. Many have little more knowledge than a GP and loads of them do not agree with combination thyroid hormone replacement let alone T3 only.

Sad to say there is a lot of ignorance and even dare I say taboo over it.

Too many rely on TSH. Mine is permenantly suppressed no matter the level of my thyroid hormones. So going by TSH is a disaster for me. But many even if they test Ft 3 & ft4 as well are TSH focused.

[waveylines in reply to birkie]

Birkie.... I very much doubt a&e will help you sadly unless you fall into a coma. They are there for life and death situations only and most likely thry eill refer you back to your GP. I know it's all wrong what's happening to you and you have all my sympathy but becoming ill will not make them change their minds but it will mean you will be less well to fight back. Personally I would never want to put myself in that position. I had to buy my own thyroid replacement meds for three years. I told them all the way through what I was doing. They had advice from. Private specialists but would not prescribe even though they recognised it was and is the best treatment for me. Eventually I won my case and it is now prescribed on the NHS.

The situation is worse since I went through this process. Your GP will only prescribe what the NHS Endo recommends. Second opinion is your best way out of this mess. You have the right to a second opinion but as it has to be a NHS Endo be very very picky about who that is. Make sure they are truly T3 friendly. Few are...

[birkie in reply to waveylines]

Hi wavetlines❤️

It's not that I can't get the t3 that's not the issue, I only wanted the t3 to tide me over until I choose another endocrinologist, as the one I saw on Dec 27th told me she didn't want to deal with me, and advised me to find another endocrinologist.

But going back on T4 would be a disaster as it never moved my T3 level, where as although, I'm still having the gut issues at least my T3 level is better on the t3.

I've done a letter to the practice manager pointing out the awful endocrinologist appointment and the fiasco at the surgery yesterday with my medication.

I can't believe we cannot complain about how very badly we are treated within the NHS, the endocrinologist appointment I had in December when she told me she didn't want to deal with me, she had that god complex, like she knew nothing was going to happen if I complained about her conduct.

Surely if she was not willing to treat me she should at least have referred me to another endocrinologist instead of making me go back to the gp to start the process all over again.

As I'm on disability money is very tight, and we're just over the Xmas /new year hols, January is a killer as I have 5 birthdays all but 2 are close family members, and one, my best friend is 40..🙄 It's a money draining month, and although my son as been pivotal in helping me with private parathyroid surgeons and appointments, I can not ask him for help this year 😔 his off to the artic circle next year on a photography course for his business, and it's not cheep🤦‍♀️.

I have mentioned in the letter the F18 pet scan showing an uptake in the right side above the thyroid bed and in the thyroglossal, tract of (14x 7 x21) and the FNA showing it to be thyroid tissue (full thyroidectomy in 2019).

I have also mentioned the uptake in the lymph nodes and tonsils and the report saying inflamitory in nature, the specialist saying I have inflammation somewhere in my body.

I also had blood work done through the eye clinic for the blood clots in my left eye, one was a rheumatoid factor, because of the result it says 30% of patients will show normal CCP antibodies this doesn't mean they don't have RA, if the patient shows clinical signs of RA please refer to rheumatology.

I have extremely swollen joints in knees /ankles they are hot and very painful, I can barely walk in the morning I'm nearly 62 and I walk like I'm 90!, I've always thought I may have RA my mother and grandmother both had this condition.

With everything going on with me not to mention the primary hyperparathyroidism, 🙄 awaiting a 4D ct scan in Feb for that, you'd think my surgery would be more vigilante with my health 😠

[waveylines in reply to birkie]

I am so sorry you are going through this. It's not good enough what they are doing or not.... Care seems to have gone out of their vocabulary.Sending you big hugs ❤️❤️

[gabkad in reply to birkie]

Isn't taking care of your health more important than buying birthday presents for other people? Health comes first. Priorities.....

[birkie in reply to gabkad]

What I spend on a couple of birthday presents wouldn't touch what the cost of seeing a private endo would be.. , I'm on disability I hardly get a great deal of money, my son paid for me to go private last time, but he can't do it this year.And why should we go private!! We have a system called the NHS set up for us, we paid into this scheme from our wages all the years we worked.

[gabkad in reply to birkie]

Is someone living with you in case you end up in a coma? Serious question. I'm being sincere because if you run out of T3 and have no thyroid, then you'll be in very rough shape very soon. I hope someone will be around to help you to get to A&E.

Your situation is appalling to be honest. I can't understand how or why the GP won't continue your T3 until you see another endo. It's not as if you have no experience with T3.

[jgelliss in reply to gabkad]

Agreed.

[WitchingHour2point0 in reply to birkie]

Birkie, I see a private endo but she works in the NHS too.

I'm just wondering if it would be worth emailing some private endos just to ask advice as to what to do. My endo would be horrified by your situation.

I don't know what else you can do.

Other than get on the phone to your MP but also your local council and councillor. They can be incredibly helpful.

[birkie in reply to WitchingHour2point0]

Thank you... I never thought about my local councillor 🤗Although I am under a surgeon in Liverpool for my primary hyperparathyroidism, she did urge me to see an endocrinologist about the thyroid medication problem, as I said, I saw one on Dec 27th,but it was of no worth.

I've never just emailed one, 🤔 when I was hyperthyroid I saw an endocrinologist a town over, unfortunately the first appointment was appalling (I had to get out of my hospital bed, in thyroid storm because he would not come to the hospital).

He dismissed my gut issues due to the anti thyroid drug saying "I'm very naughty for not taking it" 🙄 I bloody was talking it.. And it was going down the toilet in the form of diarrhea and vomit.

Changed his mind pretty quickly when he saw my uptake scan, he was like a gazelle on steroids, typing away, trying to get me to a surgeon 😂 full thyroidectomy was the outcome graves thyrotoxicosis 🙄

But I have to say, I did chuckle when he said I was very naughty for not taking the anti thyroid medication,.. I'm a monty python fan and it reminded me of the scene in the life of Brian... "your a very naughty boy" 😂😂😂😂 omg I have to laugh or I'd go insane 🤦‍♀️

[HandS in reply to waveylines]

Hi Wavylines, just for info -my recent experience is that you can report concerns to the CQC but they can’t investigate individual complaints, only note your issues as part of a review of services of a particular entity under their scrutiny. That’s not to say they won’t advise you how to complain if you call them.

In the first instance you have to complain directly to a provider, following their published process. Only after the provider has responded, do you have recourse to the Parliamentary Health Ombudsman if you are not satisfied.

PALS may be helpful but not in my experience.

I’m afraid that all public bodies (including the Police), NHS etc) are allowed to mark their own homework before scrutiny by a regulatory body is considered, and only under extreme circumstances is an entity obliged to refer themselves to their Regulator.

[waveylines in reply to HandS]

Thanks Yes that is the case re CQC. However if no one ever mentions there's a problem to them they are not aware.... Last review of my GP Practise was a paperwork one. Really don't see how that would show up quality of consultations. Hey ho...

[birkie in reply to HandS]

Hi HandS❤️

I was interested in your post, I have compiled a letter to our practice manager pointing out the failings with the endocrinologist appointment and the gps response to my medication, in that it's OK for me to be without it.. ( I have no thyroid and the gp is aware of this).

Who then can we complain to?

Surely a gp cannot say it's OK for a patient with no thyroid, no means of making thyroid hormones for themselves, it's OK not to take any thyroid medication, they always bang on about taking it correctly, don't miss doses ect.

Is that not a cause for complaint?

If yes then where do we complain to?

T3 is a fast acting medication it gets out of the system faster than T4 so I would probably be deficient in T3 within 2 days if not sooner.

I'm already hypo from my last blood work so I know I will become more hypo as the days progresses.

I think my only option is as some members have said contact roseway labs get a prescription to tide me over (going to have to swipe my credit card, which I only use in emergencies because paying it back is hard) but if it's just for one months supply of T3 it's probably going to be worth the stress 😔.

[HandS in reply to birkie]

You have to fillow the complaint procedure for both the Surgery and the Trust the Endo works for. At the same time you go to CQC website and upload your concerns - but they will not investigate.

Best wishes - hope you make progress

[waveylines in reply to HandS]

I meant to add that I rang the CQC helpline and I can log problems I've experienced with them. It's not treated individually but if they get a group of patients complaining it's a red flag and can trigger a review of the Practise. How good that review is I can't comment.I've seen the Practise Manager this morning about the fact I fell through their net repeatedly even though I was post major surgery and am told am too complex for them. . Am not sure if it will do any good.... Shes appointed an independent GP to review my case. I've pointed out it's a system failure that major heart surgery and two admissions via ambulance really should've flagged up the need for a plan. Her argument is that if the hospital don't say they don't have to so anything!! She is meant to be reporting back to me.... We shall see. But like you say they cover each other's back. I really don't think she understood tbh.

[HandS in reply to waveylines]

Sadly, that is true - the hospital discharge letter appears to be the trigger form involving other services.

My experience has been dire- and when trying to find out what should be happening, I just get ‘non answers’ - or am given another job to do by emailing or ringing someone else. It is very dispiriting 🫤

[waveylines in reply to HandS]

Sorry to hear that. I've tried to tackle it as a system fault in their service rather than individual doctors. Her answer is that the NHS doesn't want them to set up continuity through a GP following through but to just respond via the online form they've put in place as and when they're submitted. In other words irrespective of the nature/complexity of the case it's a conveyor belt response. I pointed out my case is too complex for a doctor to read up from scratch, check what's been written talk/assess/form an action plan and record in 10minutes. She agreed. I said in that case I want to know what this surgery will do re a care plan for my case. Shocking that my major heart surgery has had no continuity of care follow up from them at all. Very poor!!

[HandS in reply to waveylines]

You could ring the Parliamentary Health Ombudsman and ask for advice on how to deal with this situation - they are very helpful, even if they cannot immediately take up your case . Also CQC call handlers are very helpful .

Good luck - keep is posted

[waveylines in reply to HandS]

Thanks Hands for that useful info I did ring. Just formulating an email to my local ICB. 🙄

[birkie in reply to waveylines]

Good luck waveylines🍀🍀🍀🍀🍀

[HandS in reply to waveylines]

Good luck: take your time- I have spent long hours doing just that - it is draining. If possible, ask someone to read it for you before sending it and be prepared to make several drafts. You can get help from a health advocate in most areas, who might assist.

Just don’t send it until you are happy that whoever reads it will understand the issues. Easier said than done, I know, but sadly it’s left to us to make sense of their messes.

Very best of luck

[birkie in reply to waveylines]

I hope your recovering well, ❤️ sorry to hear your woes with the nhs😔 it's mind blowing how much they miss, and poor after care.If I had the energy, and knew how to do it .. I'd write to my MP pointing out our appalling nhs health service in Cumbria... Think its about time they dropped the HEALTH bit.. 🙄

[waveylines in reply to birkie]

Thanks Birkie for your kind words. But of a roller coaster recovery but the op was sucessful. So sorry that I took over ure post a bit. I think we will all have to start creating waves higher up..... Election coming up!!I hope the next Endo you pick is far more helpful than the last one. Big hugs ❤️❤️

[Lizzab]

This sums up our 'health system' perfectly.

[BenLabrador]

I think you may have to explore going privately. This is what I have had to do. In many places, the NHS will not provide T3 to the patients who need it based on their clinical symptoms or DI02 genetic mutation leading to poor conversion. The forum can supply names of endocrinologists. T3 can be bought in the UK or from abroad privately. You can private message me for sources. Tests can be done through Monitor My Health, an NHS laboratory, to check the T4 and T3 levels. The cost is not unreasonable if it is calculated on a cost per year, or multi-year basis.

[birkie in reply to BenLabrador]

I have been getting T3, this endo I saw in Dec prescribed it because T4 never moved my T3 up in 2 years on it.So she recommended T3,.... But the problem is my gut issues with both T4, T3 I'm constantly on the toilet with diarrhea, cramps and inflammation in my bowles, I already have colitis and are lactose intolorent my surgery and endo know this, God this endo wrote on a recent report this is a malabsorbtion issue, so gp sent me back to endo.

It's the gut issues that need addressing.

I've put some bullet points to my practice manager in a letter pointing out my conditions.

Hypothyroidism due to malabsorbtion of meds (no thyroid)

Primary hyperparathyroidism (waiting on 4D ct scan)

Eye clots, hemiretinal vein occlusion with inflammation in optic disc.

F18 pet scan which flagged up a mass of( 14 x 7 x21) on the right side FNA showed it to be thyroid tissue, it took up on the scan in the same way my thyroid did when I was being tested for graves (positive graves disease).

RA factor on blood test.

No gp as bothered with any of the above, all the information from the eye clinic went to one particular gp within the surgery, the recommendations were... Please do regular blood pressure tests on this patient due to the clotting, please do lipid bloods.

This gp as never contact me for the blood pressure test and I'm told I have to ring between 8am 9am for an appointment... I can never get one😠, I had to fight to get the lipid test done by the nurse.

[BenLabrador in reply to birkie]

Have you seen a gastroenterologist about your gut? Or tried healing your gut through improving its biome by eating for example fermented foods? The people at ZOE seem to be useful although expensive in my opinion.

[lolajone in reply to birkie]

Several thoughts.

PHPT can cause the gastro issues you describe, it may not be all due to the T4 T3 incipients. I had parathyroid surgery nearly 3 years ago and it definitely affects the guts. As does HRT if you are on that.

Put everything in writing phone calls are not a record.

Your GP should continue your care until such time as they get the Endo letter. That letter could take months (based on my recent experience) 4.5 months to get a one liner letter!

You have my sympathy it’s exhausting the constant battle.

[birkie in reply to lolajone]

My actual first diagnosis of phpt was in 2004 with the watch and wait, the only real symptoms I developed were kidney/gall stones, ostiopeania, calcification in most joints utter thirst weeing for England, In 2005 I got diagnosed with chronic fatigue syndrome and fibro and gp blamed that.

I was admitted to hospital bleeding from both ends in 2015, diagnosed with colitis and lactose intolorent . started going through the menupause early after a hysterectomy, I have thrombosis so specialist told me I needed to come off the pill, and I would not be able to take HRT.

But I've given it a go, first the gel, which did nothing as my gp miss diagnosed my hyperthyroidism (graves) that's why I was sweating bad.

I just recently tried the patches and were on them around 12 days, changing every 4th day, on the 12 day I noticed a large bruise under where the patch was, I developed a clot in my left eye and saw the eye specialist, I mentioned the patches and were told to come off them immediately 😩

I'm waiting on the 4D ct scan to find the rouge para gland as I got the second diagnosis of phpt in 2020, but I'm annoyed the specialist told me if she doesn't find a target she won't perform the parathyroidectmy 😔

[Sandra600]

Someone on here used to have a list of NHS endocrinologists who were open to prescribing T3, I went to see an endocrinologist from the list and he prescribed it for me, I take it with T4. This was about 10 years ago and I am still getting it. Maybe you could ask if the list still exists?

[Insomania]

They are defensive practicing imv. The GP likely doesn’t want to be the responsible prescriber because your TSH is so high.

Perhaps say to the GP you need T3 prescribed and a referral to another endo for a 2nd opinion on T4/T3 treatment because the original endo’s combination treatment made you very ill.

Have a look at the NICE guidance too.

[birkie in reply to Insomania]

I've just done a letter to the practice manager pointing out the diabolical failings with the surgery and the endo appointment.As the endo said she doesn't want to deal with me so find another endocrinologist, I've put in the letter I will be looking at endocrinologists with knowledge of gut issues with thyroid medication (probably won't be many if any at all) but in essence I'm picking my own endo through the gp I can't afford to go private 😔.

GP refused yesterday to re install my T3 prescription saying she want to see the endocrinologist report 🤷‍♀️ and it's OK for me to be left with out thyroid medication 🙄

I'm on T3 only not combined, both medications cause my colitis to flare up as did the anti thyroid medication hence me not absorbing it and going into thyroid storm, the same is happening with the thyroid medication.. Not absorbing it making me hypo.. And the more I increase the worse the gut issues become... I can't win😔

[Bertwills]

Can you change GPs? Or book an out of hours appointment as they are often handled by a different set of doctors? Check if your surgery has that provision. Many do.

I’ve sent you a private message with a suggestion for a short term solution. This lack of treatment for you could be sending you into completely avoidable medical crisis. It’s appalling.

[birkie in reply to Bertwills]

I'm just so sick of the gp and endo not realising the actual problem... The gut issues, I can't stomach T3, T4 it's as simple as that.. I've tried for the past 4 years on both and I can't trilated up without having bad gut issues which inevitably leads to malabsorbtion, as the endo pointed out.But her solution... Put me back on T4.. Why when nothing is going to change 🤷‍♀️

[Batty1]

I would buy my own T3 and do my Own bloodwork…. It’s definitely not the best option but until you can sort it out with the doctors….Doctor's don’t take being thyroid-less serious at all they think it’s just as if you just have a thyroid problems… I would go to my Gov’t representative and complain about your health care issue's if this is possible…. Its scary to think what they do to people with cancer when treatment causes them issues do they look for alternatives or do they just send them back to wait for letter from Oncologist. This is not right!

[birkie in reply to Batty1]

You know Batty1... I think I may just die of heart failure rather than anything else, as this is giving me real anxiety 🤷‍♀️.Even at my worst in thyroid storm, I was up beat, always joking (I think that's my way of coping)

I've had 2 near missed with wanting to end it all, but the thought of my son being left without a parent scares me straight again, and I continue on.

But the very service set up to help us, is letting us down tremendously

No wonder the suicide rate is high, the NHS is not working and the government couldn't care less😢.

[Batty1 in reply to birkie]

It’s a real shame and this problem exists everywhere around the globe… When I had my thyroidectomy I was thrown away like trash as soon as my numbers were deemed “perfect” and maybe they were just not for me …. I have suffered so many health issues since losing my thyroid it’s insane and maybe these issues would have always been an issue eventually but with thyroidectomy the health issues came fast and furious but my Endo doesn’t care no one does … Im like you I just throw my hands up and just resign to live life half empty…. I posted here about my on going saga … anemic and now low vitamin D on top of everything else… now Im trying to figure out how to take vitamins around thyroid meds and psoriatic arthritis meds … all day I pop pills it’s pissing me off .

[birkie in reply to Batty1]

😂😂😂😂 Forgive me for the laughing emojis but you made me laugh... Pissing me off😂😂😂.I can concur with everything you just said, and I to felt like I'd been thrown away after my thyroidectomy 😠.

I tried taking vitamin D because I was deficient but because I have diarrhea (thyroid medication doing it) I find I can't absorb the vit d🤦‍♀️.. I'm hoping I've sorted the t3 meds by a friend 😜

So I may have a supply to tide me over until my gp gets that golden endo report 🙄.

It's not good enough Batty1 just plodding on day after day, there as to be more to life than what we're going through, it grinds my gears because no gp or specialist would put up with it for themselves or there family members, but we grunts just have to suck it up... There will be an uprising someday💪💪... I hope😂

[Batty1 in reply to birkie]

Doubtful.. you never know

[Vasiliki99 in reply to birkie]

This truth is truly true and we never get it solved never

[1tuppence]

birkie,....it's a horrible situation for you to be in.

It seems to me that there's an urgency for you to be prescribed thyroid medication, and you need whatever will suit you best until you can get this whole matter resolved.

If it's T3 you need, then that's what you need. If it's a particular brand/form of T3 you need, then that's what you need.

I feel your attention needs to be focused right now on getting that prescription. Roseway labs have been recommended. Credit cards are there for use in an emergency.... and if this was me, I'd count this as an emergency.

When you have your prescription you will be in a better place emotionally to deal with the dross you are being served.

Look after yourself birkie.....you need to do this. Big hugs xx

[Mlinde]

I don't get it! How did endos get this lock on treatment! It's like a medical mafia! The vast majority of endos are all about treating diabetes and know next to nothing about the thyroid, yet thyroid problems affect 10s of 1000s of people! It's an outrage!

[SlowDragon Administrator]

You need to see gastroenterologist for gut issues

A referral on NHS to a different endocrinologist is likely to take many months, possibly a year

[birkie]

Hi slowdragon ❤️

The endo was an urgent referral by gp, so I will demand the same again.

I have wrote to the practice manager with my concerns, and because I have inflammation in my body, I have said I want referred to gastro and rheumatology.

So I'm hoping they get into gear and deal with this situation, obviously I've to wait for the golden endo report to reach my gp before she will talk to me about what as been said in the report, bet she won't say "I told her to find another endocrinologist, I'd be surprised if she puts that in, she may say.. I recommend T4... NO THANKS!!!

or she may say I think another endocrinologist would be better, but I won't hold my breath on that 😠

[Vasiliki99]

Im not sure what you can do -my body does not react to T4 or T3 well really and the guts means I have to eat very little compared to before its very tough and you should be listened to - im just not sure there are physical cures really right now - ,campaigning for change might be good or something - i struggle with these issues of physical health its just not had the press and systems needed to help give usmeds

[birkie in reply to Vasiliki99]

I've told the endocrinologist and gps.. Shown them photos of what I'm passing 💩 so I'm not making this stuff up, because the look on the endocrinologist face when I showed her the photos was of, well she as me now she's brought proof... But it didn't deter her from trying to prescribe the T4 AGAIN 😡 as I told her I've been on it twice, and twice you've taken me off it because my bloods are awful, why on earth would you think third time is a charm🤦‍♀️

I'm going to stand my ground with the gp and ask for another referral to a endocrinologist of my choosing 👍

Also going to insist I see the gastroenteritis 👍

[Vasiliki99 in reply to birkie]

It's c difficult you have my best luck for both , I think that it's worth trying and you can complain too about it , think what I want it's a tough condition to manage it's always affected my bowels and that's true