helllp!: so I moved house Sept ! I’m on T... - Thyroid UK

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helllp!

jayne63 profile image
38 Replies

so I moved house Sept ! I’m on T3 conpleteley prescribes by a GP . New doctors surprise surprise say no! It’s on the red list ! You need to see an endo!

I agree but it seems they have agreed to stop my T3 and only offer me Levo which I don’t convert ! That’s why I went private 11 years ago and sorted this mess!

waiting for my 4 th call of them saying Levo or nothing ! I’m refusing to take what I know does not work! I can’t do what they want and yet it’s dangerous just to stop ! This is making me I’ll!

How do I approach this as at the moment it’s anger n upset so striking me off comes next!

I’m 58 for another 9 days I’m on HRT whey I can get it ! All this is based on me having no T4 yes it’s normal and it’s on the red list !

fir

38 Replies
1tuppence profile image
1tuppence

So sorry to hear this.

Can you contact the endo you saw privately and ask for their help/advice? Your old GP?

In the short term, is it possible for you to fund this yourself whilst you wait for help?

jayne63 profile image
jayne63 in reply to 1tuppence

Hi

Thank you and alas no!

We moved north my home town and had a fab GP who was fully supportive !!Downsizi Ned and new GP as it’s out of catchment for mine ! This GP is not interested and wants me off T3 xx

birkie profile image
birkie in reply to jayne63

Hi jayne63💓

My GP wanted me off T3 blaming all my symptoms on it when it's actually a parathyroid problem, silly me took the bait and came off it went back on T4 which I never got on with , and after 2 weeks of being on it started with the awful gut issues 🤢..I stuck with it and went hypo😠 GP would not put me back on T3 until I saw an endo, took 3 months for my appointment I went through hell on the T4 , even the liquid stuff 🤮...I phoned my GP and told him I'd had enough and want back on T3 as my last bloods showed I was hypo T4 not working.

To my amazement he put me back on it...now like before I'm having trouble obtaining it😠😠😠😠 I'm sure this is just a way of getting us off T3, it's totally wrong to take you off a medication that's working for you....can you imagine them saying to a diabetic "ho your medication is on the red list so you can't have it" here have a version that doesn't work for you..😠😠😠

jayne63 profile image
jayne63 in reply to birkie

isn’t it awful! I won’t t be changing end of 🤣👊

tattybogle profile image
tattybogle

NICE (NHS~UK) guidance for Liothyronnine says that when considering removing T3 from established patient ,an endo should be involved.. or words to that effect .. endo can say if there is a reason why that particular patient should not be made to try levo again.... i'll try to find it .... pretty sure it says GP can't just stop it by themselves without endo involvement.

you may have to go through the wringer with new endo, and fight to keep it ,, but fairly sure you are 'allowed' to stay on it until the endo is actually involved.

tattybogle profile image
tattybogle in reply to tattybogle

here :

sps.nhs.uk/wp-content/uploa....

page 4

"Patients currently prescribed liothyronine, or levothyroxine and liothyronine combination therapy, for hypothyroidism should be reviewed to consider switching to levothyroxine monotherapy where clinically appropriate. In some cases a retrospective review of the basis for the original diagnosis of hypothyroidism may be necessary. Arrangements should be made for switching to be undertaken by a consultant NHS endocrinologist, or by a GP with consultant NHS endocrinologist support. Patients who are currently obtaining supplies via private prescription or self-funding should not be offered NHS prescribing unless they meet the criteria in this guidance.

The consultant endocrinologist must specifically define the reason if any patient currently taking liothyronine should not undergo a trial titration to levothyroxine monotherapy, and this must be communicated to the GP"

1tuppence profile image
1tuppence in reply to tattybogle

tatty....is there a list of endos who are actually thyroid specialists? I know Thyroid UK have a list of endos who have proved helpful, but wonder if there is any means of checking any endo for what they specialise in be it diabetes, thyroid or other endocrine glands. I've seen 6 endos in my life, and only the last one knows about the importance and function of the thyroid. It worries me that so many place reliance and above all hopes, on seeing an endo to help them.....yet if that endo does not understand thyroid they will not have moved forward at all, and in fact may be pointed backwards.

tattybogle profile image
tattybogle in reply to 1tuppence

not sure to be honest .. never been anywhere near an Endo .. and not (currently) intending to :) Admin will know.

1tuppence profile image
1tuppence in reply to tattybogle

Thank you....SeasideSusie has replied.

SeasideSusie profile image
SeasideSusieAdministrator in reply to 1tuppence

1tuppence

is there a list of endos who are actually thyroid specialists?

No. The list that ThyroidUK holds is a list of endo names, forwarded to them by members, who have proved helpful or are known to be open minded/supportive (and maybe have prescribed) where T3/NDT are concerned. There is no specific list (to my knowledge) of actual thyroid specialist endos. This is why we suggest that anyone contemplating seeing an endo, or other doctor, does their own research beforehand to ensure they are the right one for their needs.

1tuppence profile image
1tuppence in reply to SeasideSusie

Thank you SeasideSusie. I understand what you say about doing our own research, and you're right, we do need to do that. My concern, based on my own experiences and what I see here and in other places, is that many of us think an endo will have full knowledge of how a thyroid works, simply because they are an endo. They don't though, do they?

SeasideSusie profile image
SeasideSusieAdministrator in reply to 1tuppence

I've only ever see one endo, back in 2002 about 27 years after I was diagnosed hypothyroid, he hadn't got a clue, was a bully and all he wanted was for my suppressed TSH to come back into range. We achieved this by lowering my dose of Levo until my TSH just scraped into range, but he totally ignored my FT3 level which by this time had reduced to 2.8 (2.8-7.1). I, of course, felt very ill but did he care - not one jot, he had achieved his aim of getting TSH into range. I ditched him with the blessing of my then GP.

Would I ever see another endo - nah, I'd rather stick pins in my eyes!

1tuppence profile image
1tuppence in reply to SeasideSusie

Totally understand your point of view. ... thankfully you had a supportive GP at that time.

Problem lies in so many GP's not being supportive, not knowing enough, not being open to learning more, not actually treating their patient but treating blood test results, ignoring the importance of the nutritional back-up a thyroid and the hormones need to be as efficient as possible, and relying on advice from an endo who may well not be a thyroid specialist...or perhaps one who is, but is still reliant on TSH being the "star of the show".

arTistapple profile image
arTistapple in reply to 1tuppence

Unfortunately all true!

1tuppence profile image
1tuppence in reply to arTistapple

Because I'm so horrified by what has happened to another hypothyroid patient, it made me wonder what their endocrinologist (who refused to believe their experienced condition, and refused to treat with the needed T3) specialised in within the endocrinology spectrum. And in turn, that made me wonder about endocrinologists I've seen. I'm in the process of looking back through my diaries to remind myself of names...to then look them up. The professor of endocrinology I saw, who did not take note of my long list of symptoms, addressed fluid retention...(take more diuretics, which previously had had no effect at all...the fluid was mucin), the deep inner cold (carry a hot water bottle...which I already had to do) and totally ignored dry skin, hoarse voice, weight gain, muscle loss of strength, thinning hair, etc etc. Why? well, I discover today on looking him up...he was a diabetes specialist. Why then did he feel qualified to see me, let alone not offer any responsible treatment? Thanks to him, my last years with my husband were blighted by my feeling so very ill.

arTistapple profile image
arTistapple in reply to 1tuppence

1tuppence I am upset on your behalf. My husband and our retirement has been blighted by this hypothyroidism too. He came home very ill from his last day at work and I (undiagnosed at the time) frantically saw to his needs, although I was very ill myself, with no understanding of what was wrong. I now know I was misdirected (or just treated very lazily) on so many occasions by my GP, also A&E doctors. It was a truly terrible time. There is no empathy within many medics, no integrity. Sometimes they are ignorant but sometimes they tell outright lies. My husband is still here (thank goodness) but it’s been difficult. However, now I am able to rely on him and just at the moment I am better than I have been in what seems like a very long time. As you yourself say often, “consider yourself hugged”.

1tuppence profile image
1tuppence in reply to arTistapple

Thank you ...hugs are always welcomed :-) I am angry with this man and his lack of treatment, as well as his arrogance and insulting ignorant report. However, I'm now much more aware than I was when I saw him....though he did not "see" nor listen to me. Thanks to this forum, I learned enough to question my GP, and began treatment, which has seen me through to now, where I am learning and questioning more.

I'm choosing to use the energy of this anger to do my best to help enlighten others as well as myself. The more we can learn, the more we can help.....both ourselves and others....maybe even medics :-) xx hugs back.

birkie profile image
birkie in reply to 1tuppence

Hi 1tuppence💓

I concur with everything you have said👍 I've seen 4 endos or dodos with my thyroid (thyroidectomy) and just in 2020 with parathyroid problems, now here's the kicker...2 endos wrote to me saying I probably had primary hyperparathyroidism in 2020, after my bloods came back over range ,ok what now..ho we will just wait 5 weeks for more blood , which they did wrong but dismissed me anyway from the clinic as ok😠😠 I have gone on like this with out of range blood tests since 2020 , my GP would not entertain me anymore because he kept saying the endo says your bloods are ok...only one set ,the rest were over range 😠 cutting through all the bull 💩 my son paid for me to see a private parathyroid surgeon 18th November, he looked at my blood work told me I definitely had a parathyroid problem,then did a ultrasound scan on my neck and found a 7mm nodule that's giving me real jip....so there you are pay private and you get your diagnosis use the NHS as I have you get a bunch of diabetic specialist's trying to be thyroid specialist's 🙄🙄🙄🙄

arTistapple profile image
arTistapple in reply to 1tuppence

Very much same here!

Hashiboy profile image
Hashiboy in reply to SeasideSusie

Not sitting on the fence there SeasideSusie Sounds like a horrible experience and don't blame you for giving them the wide. My experience has been a bit more mixed. I've seen about five. The first was fantastic female endo who quickly talked through the pros and cons of T3 but then left. Then came a locum who admitted he knew nothing about T3 but prescribed it cos it was in notes. Then he left after a few months and the T3 stopped. Then the next one was very pleasant but thought T3 was the work of the devil. Then private then back to the NHS where I now get T3 again. It's a bit like roulette.

jayne63 profile image
jayne63 in reply to tattybogle

yes but they won’t prescribe in meantime so I have supplies ! Just think I’m

Not going to win and I refuse to return to Levo

And be ill so I will have to fund in future !so angry

Hashiboy profile image
Hashiboy in reply to jayne63

Is there no way to get another opinion or to go to a different practice? After 11 years this doesn't sound like a decision that a GP should make without consulting an endo.

DippyDame profile image
DippyDame

This just proves how crazy the current situation is.

Stable on T3-only for 11 years!

Would they withdraw effective treatment from any other chronic condition basically on a cost ( they won't admit that) and irrational scaremongering, rather than on a logical medical basis....because, if they know their subject, there is no medical reason do do this

I need high dose T3-only.... in order to function I have to self source and self medicate with no NHS safety net. The one endo I saw said T4 would suffice....it nearly kiled me!!

Insist on seeing an endo, speak to your practice manager if needs be. This is not a decision for a GP to take ...see tattybogle's reply re NICE.

Keeping calm as we deal with this nonsense is dificult but deal with it we must.....your GP probably knows he is out of his depth but won't admit it.

I don't think they have grounds to strike you off because you ask for another opinion from an endo.

I'm furious about this whole medication mess!

1tuppence profile image
1tuppence in reply to DippyDame

Me too, DD. Not for myself at the moment (thankfully due to help and advice given here) but on ITT I've been reading the story of a lady who needed T3, and her endo refused to give it.... which set me off wondering if he was a "general endo"...not a specialist thyroid endo..... and hence my questions today.... and my realisation that the endos I saw...and hoped for help from, including the prof of endocrinology, were maybe not the thyroid specialists I thought they were.

DippyDame profile image
DippyDame in reply to 1tuppence

Most endos are diabetic, not thyroid, specialists.

Glad you are OK.

I'm not angry for myself either but for all the people suffering needlessly due to wrong diagnoses and medication at the hands of clueless medics

Take care

arTistapple profile image
arTistapple in reply to DippyDame

Why do you think diabetics get ‘better treatment’? Probably because no-one was paying much attention to all the amputees - until they did. I bet it was a ‘directive’. Diabetes is more spectacular than thyroid. Thyroid is slow. Plus it’s put about that thyroid is so easy. You don’t need to do much about it. The ‘rules’ are dead simple, set by whomever is the t..t at the top. Easy peasy. Thyroid clinic is a holiday afternoon. Some of them might even look forward to it! Unless off course they get cranky patients like us - shock of shocks, wanting to get well! It makes sense, thyroid patients are slow to respond, slow to reply (to the level of unbelievable rudeness), have a huge list of vague (or not so vague symptoms) doctors can’t deal with, other than by proper medication levels, which they clearly can’t address. Diabetics, even in this day and age present with dramatic symptoms. They don’t really get drama from us. They can easily put us off until the next clinic when it’s not their turn to do it.

DippyDame profile image
DippyDame in reply to arTistapple

Just read this on a diabetes site...

Luckily, abnormal thyroid function can easily be diagnosed by simple blood tests, and effective treatment is available.

The problem most likely lies within that sentence!

They don't believe there is a problem so they don't accept there is one.

I guess it's based on opinion ....not on science!

1tuppence profile image
1tuppence in reply to DippyDame

Have you seen and read the NICE guidelines for GP's before they write a referral to an endo? I can't provide the link, sorry....I've been looking at lots of various sites today....but I found the list of conditions to be met before any referral shocking, and feel pretty surprised that anyone manages to get one..

humanbean profile image
humanbean in reply to arTistapple

Why do you think diabetics get ‘better treatment’?

I have a couple of theories, but no definite answers.

1) Diabetics are roughly 50/50 male and female, so there is less chance of misogyny coming into the equation than there is with thyroid disease. I think the proportions for hypothyroidism are very roughly 80% female and 20% male.

2) Insulin - either the lack of it or in excess can be deadly. Thyroid disease is a much slower killer.

Allegedly, in days before there were any reliable thyroid hormone treatments for hypothyroidism it was estimated that it took about 12 years for a patient to die of the the disease. Patients often went mad before they died but women have always been assumed to be mad, hysterical, stupid, attention-seeking etc, so if they end up in asylums from untreated hypothyroidism, well, that is considered normal for women by the medical profession, isn't it?

arTistapple profile image
arTistapple in reply to humanbean

Yes. Honestly it makes me spit feathers. It’s also the very casual nature of the discrimination. It seems everyone is comfortable with it except US!

jayne63 profile image
jayne63 in reply to DippyDame

totally agree and thank you so much that means a lot ! I feel so alone

DippyDame profile image
DippyDame in reply to jayne63

You are not alone here...we all understand!

Post as often as you like....it helps!

SlowDragon profile image
SlowDragonAdministrator

Were you being prescribed T3 only on NHS at your previous surgery

How much T3 are you currently taking

Technically you do need to see an NHS endocrinologist regularly (guidelines say annually) to be monitored and continue getting T3 prescribed on NHS

With Covid and backlog……that’s not happening

An NHS referral is typically taking over a year

You likely need to make other arrangements while you wait

Private consultation and prescription enables access to Thybon Henning 20mcg tablets via specialist U.K. pharmacies

Cost currently 50-60p per tablet

NHS price dropping, but still over that at £58 approx per 28 tablets

Email Thyroid U.K. for list of thyroid specialist endocrinologists and doctors who will prescribe T3 if clinically appropriate 

tukadmin@thyroiduk.org

Roughly where in U.K. are you now

Which sub ICB region

openprescribing.net/analyse...

jayne63 profile image
jayne63 in reply to SlowDragon

currently on 40 mcg daily and I wi t have d ouch for say 4-6 months whilst they sort and endo

jayne63 profile image
jayne63 in reply to jayne63

Sorry typos I take 40 mcg daily split into am pm but I will run out in 4-6 months will source abroad

TaraJR profile image
TaraJR

As well as the NHSE SPS guidance in place, which is the current overall guidance, I must mention the BTA British Thyroid Association guidance that says a patient who is stable and well on T3 should not have it removed. And that anyway any changes should be done by an endocrinologist, NOT a GP. I suggest you ask for an urgent appointment with your GP and make sure s/he abides by all these. They're for patients' safety,

Also, have you complained to the practice manager?

This is from Which? about ways to complain about a GP practice.

which.co.uk/consumer-rights...

BTA links

british-thyroid-association...

british-thyroid-association...

british-thyroid-association...

serenfach profile image
serenfach

There is supposed to be a partnership between the GP and the patient, and they are not supposed to change what another GP has recommended. That is the theory...

I saw someone a few years back who is supposed to be top of the tree in Endo terms. He wanted me off T3, suggesting upping my T4 to over 400 thingies. I told him either I stay on the combination that I was on, or I would go on to NDT. He turned a bit purple and started that it was dangerous, I could be taking rat poison etc. So I suggested we left things where they were and he was so glad to get rid of me, he agreed.

I am due to see him again soon. Oddly enough the notes on the blood test results no longer say the surgery is not able to test T3, so someone has made a big fuss somewhere - probably the Endo who saw his lists growing daily as it was only him who could give the go ahead to test T3.

It may be worth just saying you have been well on what you are taking, were ill before, and why does he want you ill again? The sharp truth may make him think....

Sending a hug.

thyr01d profile image
thyr01d

Hi Jayne, what a worrying situation you are in. I think the information supplied below is what you need, showing the regulations/guidance about taking a patient off T3. However, in desperation this is what I did with my GP (at the time my TSH was over 95 with 95 being coma level so I was truly desperate). I said that I would hold her responsible for keeping me ill if she would not help. As a result I am now on T3 prescribed by a endo. It's a last resort action and I hope you can get all you need by taking along that guidance instead. Best of luck.

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