Saw GP about T3 prescription ๐Ÿ™„: Hello everyone... - Thyroid UK

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Saw GP about T3 prescription ๐Ÿ™„

birkie profile image
birkie
โ€ข98 Replies

Hello everyone ๐Ÿ’“

Well I managed to get an appointment with my GP face to face..๐Ÿ˜ฎ please members don't be jealous ๐Ÿ˜‚This was actually to discuss a report a private parathyroid surgeon wrote to him stating I needed Futher bloods (PTH,cal,vit D magnesium, phosphate) 24hr urine calcium test, pet chlorine scan to identify the nodule he found on the ultrasound scan.

It's only taken the surgery 5wks to admit they have received it, and in that time they have not acted on anything in the letter๐Ÿ˜ค so hence my appointment!...well gaslighting is a real thing!! Who'd have thunk it๐Ÿ˜‚.

He firstly went on to poo po the surgeon's diagnosis as..(one it could be an enlarged para gland (given Karen's blood work and kidney stones passed, ostiopein in spine and left thigh bone, calcified tendonitis, calcification in joints, and heart I'm learning towards a parathyroid problem) also I can't rule out that it could also be an enlarged lymph node and a piece of leftover thyroid tissue but the only way we can determine this is through a pet chlorine scan.

So GP says...it can't be a parathyroid problem as your bloods are NORMAL! I explain they are both at the top end of normal Doc, and what about the ones that are over range? Also they can fluctuate!

After some heated words๐Ÿ˜ค๐Ÿ˜ค he as agreed to the blood's/24hr urine and is in the process of sorting the scan out...whooo! Thanks doc๐Ÿ™„.

So to the T3 thing..he put me back on T3 but they are capsules my first 2 boxes were 10s great I could split them more palatable on my stomach....then the pharmacist said they couldn't get any 10s so had to accept 20s to which I can't split (after 4/5 days stomach and bowle problems are back ๐Ÿ˜ญ..also if I have to tralate up I can't do it by 20 making it 40mg...so GP looks on computer saw I'm on roma..so I asked to be put back on the TEVA I can split those...he looked at the Teva and compared the price between the Roma and TEVA...saying to me.."ho Roma do 5s have you been given 5s" I said no never informed me they do 5s ..ok I'll do a prescription for 5s Roma as TEVA are far to expensive actually telling me how much a box of Teva cost the NHS๐Ÿ˜ฎ and that 5s would be better on my stomach as I can split them!!!.

WOW!! Talk about putting money over health...there it was people in action in my surgery ๐Ÿ˜ ๐Ÿ˜ 

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DippyDame profile image
DippyDame

....and I wonder how much NHS money has been wasted, by shockingly inefficient bean crunchers, to cause this penny pinching!

...then the pharmacist said they couldn't get any 10s so had to accept 20s to which I can't split

They clearly don't understand dose appropriate medicating.

If the patient wasn't as switched on as you they could well be overmedicated....

So what next....you have a life threatening disease but we can only offer you aspirin, it's cheaper!

These people are not fit for purpose!!

Sorry birkie....that's dreadful.

birkie profile image
birkieโ€ข in reply toDippyDame

Hi DippyDame๐Ÿ’“

Truthfully I'm not surprised this was the outcome ๐Ÿ˜  although I really don't want to know the price of the said medication as it as no interest to me!! My only interest is to become well..to feel better and to be prescribed the correct medication ๐Ÿ‘

And yes thanks to this fantastic site and our fantastic members ๐Ÿ’“ I know way more than that GP and the pharmacists.

But it's always the look on these GPS faces when you present your case about your thyroid medication either not working or your not getting the right amount..it's not a nice feeling to be looked at like your a dumb ass๐Ÿ˜  and a god complex seems to be a real thing amongst some GPS today. I think the covid thing as given them to many rights over patients with appointments and referrals, this needs to stop,they need to get back to doing what they did before the covid pandemic ๐Ÿ˜ 

DippyDame profile image
DippyDameโ€ข in reply tobirkie

Absolutely....I'm not surprised either.

They don't like us to know more than them ....having said that I now have a rare thing, a GP who does listen.

I don't know what doctors do these days....what happened to home visits, night calls, same/next day appointments and doctors who actually looked at you and asked how you feel.

They've closed our local branch surgery which is very inconvenient

We should not be involved in discussing the cost of medication....it's unprofessional!!

And they seem clueless about that too!

Take care.

birkie profile image
birkieโ€ข in reply toDippyDame

I don't know if any members have noticed ๐Ÿค” but I've seen a lot of commercials for private health care on TV lately ๐Ÿค” they seem to be directing us in that direction ๐Ÿ˜  that's ok if you can afford to do that, my son and his long term girlfriend are thinking about it as he went through a 19 hour A&E wait for an umbilical hernia last year ๐Ÿ˜ณ he said due to his job (traveling back and forth to London he couldn't rely on the NHS, it took months to sort out a colonoscopy for him and he is still under the gastro for Futher tests not done yet!!๐Ÿคฆ

DippyDame profile image
DippyDameโ€ข in reply tobirkie

My younger son had a similar experience with kidney stones....they did a Lithotripsy 4 years ago....no follow up....it hadn't worked...eventually, after he chased then up.... surgery carried out more recently....that was a mess....still not fully resolved.

I've heard they are considering charges for some treatments....hmmmm!

No longer "free care from cradle to grave"....in reality it's not free care is it , we pay taxes!!

More power to thyroid warriors!!

birkie profile image
birkieโ€ข in reply toDippyDame

Yes it was on the news Sajid javid says we should pay to see a GP and pay to see specialist's, totally out of touch with the real people of the UK๐Ÿ˜  just because he can pay to see his doctor privately don't mean we all can๐Ÿ˜  and if you go to a surgery and don't have the money would you be turned away with no treatment?? ๐Ÿ˜ ๐Ÿ˜ ๐Ÿ˜ 

shaws profile image
shawsAdministratorโ€ข in reply tobirkie

To start asking patients to 'pay' means that many thousands of people who don't get high wages but still have clinical symptoms will avoid seeing a doctor.

If people get paid per hour in their work and if they become unwell may not get sick pay and may find that they are 'out of pocket'and worrying about how they will survive and be able to keep their home.

I believe that many GPs are still not 'seeing' patients but still doing 'phone consultations' instead.

I also believe this method reduces our power in suggesting to GP how best to treat patients who're hypothyroid.

Slowly, slowly we will become familiar with having to pay for our consultations and prescriptions.

birkie profile image
birkieโ€ข in reply toshaws

I believe that is what this country is aiming for the American way private health care, but I know I couldn't afford any kind of health care.And yes Shaw's my GP is still doing phone consultations, and worst of all my surgery as now closed and amalgamated with another in my very small town ๐Ÿ˜  this surgery was over run with patients before we moved in๐Ÿคฆmy friend works in the industry and said he doesn't know how this is going to work out with both surgery's morphing in to one.

I honestly dispare how my GP acts I've not seen this particular GP in 9 months,not once has he checked my blood pressure or my pulse, I mentioned I was also having trouble swallowing food,it gets stuck and is very painful going into my stomach..he never offered to examine me..not once ๐Ÿ™„so because of his frivolous attitude I'll be making another appointment hopefully with another GP๐Ÿคž๐Ÿคž๐Ÿคž

shaws profile image
shawsAdministratorโ€ข in reply tobirkie

I am surprised the doctors etc who're changing methods of diagnosing/treating to suit themselves rather than considering that some patients who attend the appointment may well have his/her wages diminished if they get paid by the hour rather than a monthly payment.

Buttercupsareyellow profile image
Buttercupsareyellowโ€ข in reply toshaws

I work for the NHS and totally agree ALL care should be free. HOWEVER there is a huge waste in the NHS from patients not attending appointments and not cancelling. These could then be given to other people. I have sometimes wondered (controversially) whether we ought to pay a deposit for an appointment (say ยฃ50 for GP and ยฃ100 for hospital) which is automatically refunded when you actually turn up for the appointment. Might stop some of the wastage and care would still be freeโ€ฆโ€ฆ.

birkie profile image
birkieโ€ข in reply toButtercupsareyellow

Obviously this is a great Idea for the no shows, but I couldn't afford ยฃ50/ยฃ100 even if it's reemburse ..I've never not turned up for any appointment bar one when I collapsed in wh smith and was taking to hospital in the ambulance, I kept saying I've got an appointment with my GP..I should be there๐Ÿ˜ฎ the ambulance crew were telling me your heart rate is off the scale (graves thyrotoxicosis) you need the hospital!!But I agree if you don't turn up for an appointment you should indeed be charged a fee๐Ÿ‘๐Ÿ‘

Buttercupsareyellow profile image
Buttercupsareyellowโ€ข in reply tobirkie

I remember my husband having a physio appointment and supporting him. It was outpatient at the hospital. They had a sign up about the number of missed appointments and no shows at the clinic in the previous month. It was the equivalent to an entire physiotherapist post! Such a waste. I do agree about even a deposit being a lot, but maybe even if they took card details and said we only take the money (effectively fine you) if you donโ€™t turn up. Unfortunately the downside of a totally free service is there are a lot of people who donโ€™t value it and think itโ€™s ok just not to engage/show up etc. very frustrating as a health care worker who is really stretched when you know there are lots of others who would jump at the chance of an appointment. Not really sure what the answer is thoughโ€ฆ.

birkie profile image
birkieโ€ข in reply toButtercupsareyellow

Yeah I remember when I was fitter way before my thyroid/parathyroid went nuts, myself and my then partner travled a lot, we would pay via our cards, the hotel stated they would keep our card details in case we trashed the room๐Ÿ˜‚ So yes I think that could be a good way of making sure people turn up for appointment's ๐Ÿ‘ it can't be such a hard task to cancel an appointment in good time instead of just not turning up๐Ÿคท

kattiee profile image
kattieeโ€ข in reply toButtercupsareyellow

2018, so no mail problems, sat with my 90 year old neighbour as post delivered at 13.30, a letter for a hospital appointment that morning at 9.15. Should she be fined. Iโ€™ve had appointments sent for my son when we had made it clear to when hospital we were unavailable and only given number to reply to answer machines to leave a message to cancel. After leaving 4 messages, over several weeks I eventually got through, on a day someone was there, to the consultants secretary, and was thanked as the answer machine wasnโ€™t working. Itโ€™s not just the patients at fault.

Buttercupsareyellow profile image
Buttercupsareyellowโ€ข in reply tokattiee

Would totally agree with you, if they went down that route the patient would actually need to be able to get hold of someone to cancel the appointment. I think we could probably start a whole new thread on the frustration of getting hold of NHS professionals (that includes those of us working in it ๐Ÿ™„)

Margareta3 profile image
Margareta3โ€ข in reply toButtercupsareyellow

What about consultants paying their patients for making appointments but not letting them know; no letter, no phone call or a message, nothing, just a letter few weeks afterwards that the patient did not attend the appointment??? Happened to me recently.

birkie profile image
birkieโ€ข in reply toMargareta3

Spot on Margaret ๐Ÿ‘ I was in hospital in thyroid storm and my ward doctor arranged for me to be seen by an endo at one o'clock, I just wanted to sleep but forced myself to stay awake as I wanted to be alert when the endo came.She never turned up๐Ÿ˜ ..my ward doctor was appalled as she never informed him she would not be attending, I was forced to go to see an endo a town over the next day out of my hospital bed๐Ÿ™„ and he was as much use as a chocolate tea pot, asked me why I needed to see him...well my T4 is 100 my T3 is 39.4 and they can't detect my TSH...do you need anything else ๐Ÿ˜ ๐Ÿ™„๐Ÿ™„๐Ÿ™„๐Ÿ™„

Buttercupsareyellow profile image
Buttercupsareyellowโ€ข in reply toMargareta3

Thatโ€™s outrageous! Although I do wonder if the Royal Mail strikes may have been a problem there. I was still getting Christmas cards in January that I know were posted in November. My recent blood test with Medichecks also never made it. They did send me another for free, but I had to send the return by registered post to ensure they got itโ€ฆโ€ฆ.

Buttercupsareyellow profile image
Buttercupsareyellowโ€ข in reply toMargareta3

They should pay bigger fines too ๐Ÿคฃ

NIKEGIRL profile image
NIKEGIRLโ€ข in reply tobirkie

sadly in New Zealand we pay for our GP visit which is ยฃ27 per visit and ยฃ8 if u do a blood test at the drs clinic. Now the upside side is you do a real actual dr and itโ€™s the same dr every time plus I join 2 x 15 minute appts together and get a whole 30 minutes with the dr. If I am really sick I pay the ยฃ8 for the blood test. Saves me driving g to the blood clinic and waiting upwards of 45 minutes. But it is ยฃ27 every time u see the dr and ยฃ2.50 per prescription item or if u r like me and probably like most on this sight I have a high user card and I get to October and my prescription is free until January. Nothing is free in New Zealand.

FancyPants54 profile image
FancyPants54โ€ข in reply toNIKEGIRL

That sounds pretty much like Ireland. But on the upside, you can get an appointment and your prescription charges are much less than ours. ยฃ8 for a blood test is a good deal too compared to testing privately here. And then, when we do, half the doctors won't accept the darn results anyway!

It's our own fault. We lost a massive number of medical professionals, both GPs and hospital medics, with Brexit. We basically told the medical staff from the EU to sod off. So many of them have and now we think it's terrible we don't have enough to see the patients. So predictable and still so misunderstood.

helvella profile image
helvellaAdministratorโ€ข in reply toFancyPants54

Remember, in the UK prescription charges only apply for England!

Also, it probably bears repeating, hypothyroidism requiring thyroid hormone qualifies people for prescription charge exemption. And, even if you don't qualify, the prepayment certificate approximates in cost to one prescription per month.

Doris11 profile image
Doris11โ€ข in reply toNIKEGIRL

Wow your prescriptions are cheap ๐Ÿ™ˆ I think ours our nearly ยฃ10 know!

Milkyway88 profile image
Milkyway88โ€ข in reply tobirkie

I understand Javid is Morgan Health, links to JP Morgan investment bank, to which he was adviser just prior to becoming Health Secretary.

Dillongirl profile image
Dillongirlโ€ข in reply tobirkie

Yes, drip drip we're being conditioned to the idea. A few years ago I was referred to an Endo - last autumn (and now knowing and experienced much more) I asked for another referral and was told "No we don't do that sort of thing - we can write a letter for you, let us know which Endo and we'll post it to them. During the same phone consultation I mentioned that my podiatrist wanted me to have a scan - "oh yes we can do that" It did take 6 months but was scanned just before Christmas - and my podiatrist's suspicions were confirmed. I took advice from this forum and started taking selenium - feel much better but am gathering energy and courage to find an Endo and find out how much my appointment will be. Got problems with my house so will have to budget - that's it isn't it? Don't GP's think that we do have other issues in our lives to contend with. Good luck

birkie profile image
birkieโ€ข in reply toDillongirl

My sentiments exactly, ๐Ÿ‘ I know surgerys are having a tough time at the moment, but exactly why is it so bad??? In just under 3 years we've gone from a sort of crap health care service to an absolutely diabolical one!!Everything seems so slow...blood tests, appointment with specialist's, treatments, scans ect..my GP is like a sloth..he is reluctant to do anything..this is why I ended up in thyroid storm in hospital for 15 days in a part coma..then lost my thyroid in 2019 all because he couldn't be bothered doing thyroid Blood tests.. saying all symptoms were due to the change(menupause)๐Ÿ˜  it took me over a year trying to push him to do thyroid bloods, and I saw other GPS in the surgery who just went along with my GPS diagnosis (menupause)!! ..I thank my lucky star's I collapsed at home my son got me to the surgery and I saw a new GP she'd just started... diagnosis me immediately on my symptoms did bloods that confirmed overactive thyroid (graves thyrotoxicosis) it's an absolute shambles now the NHS๐Ÿคฆ I have anxiety attacks now when I need to see a GP.. because I alway know the out come..if you don't fight they just walk all over you๐Ÿ˜ ๐Ÿ˜ ๐Ÿ˜ 

Dillongirl profile image
Dillongirlโ€ข in reply tobirkie

Oh dear, so sorry. I understand the frustration. I was unwell and very tired for two years (about 48 years old) and asked if I was going through early menopause, She tested for that - no I wasn't - revisited her but told that I was getting over delayed stress of divorce. Next time I went to surgery a locum observed that the symptoms could be one of 3 things, menopause, anaemia or thyroid - so one blood draw, three tests. Came back underactive thyroid. Why didn't my doctor ask for those tests from the original blood test 2 years previously? It seems that some GP's don't think to 'just check' Hey ho. Take care.

birkie profile image
birkieโ€ข in reply toDillongirl

You take care to๐Ÿ’“...seems like we got the same treatment,my pending divorce was also mentioned as to why I was ill ๐Ÿ˜ ..even when I stated it was amicable ๐Ÿคท

yveh profile image
yvehโ€ข in reply toDippyDame

You are lucky to get T3 as I have to buy my T4/T3 combination via a private pres cription. Gloucestershire do not prescribe T3

DippyDame profile image
DippyDameโ€ข in reply toyveh

I don't get T3 from the NHS....no hope!!

It's all in my bio!

The cost sees them heading for the hills!

I need a supraphysiological dose....which works well because I have a form of Thyroid Hormone Resistance which causes low cellular T3

It's a life saving treatment but medics, generally, don't seem to understand that

I have to buy my own, self medicate and fly solo.

Hope you are well

shaws profile image
shawsAdministratorโ€ข in reply toDippyDame

To be aware that a particular form of hypothyroidism (resistance) needs a larger dose to enable it to saturate all of our T3 receptor cells and enables you to feel well with symptoms resolved . It is disgraceful that the patient isn't allowed to have T3.

One of TUK's past expert - Dr John Lowe (now deceased) took a large dose of T3 himself as he stated it 'had to saturate' all of the T3 receptor cells which, in turn, sends out 'waves 'for up to three days. It enabled him to carry on with his research and advising patients how best to relieve their clinical symptoms.

Now that the cost of T3 has reduced it, hopefully, means that doctors will prescribe it rather than insisting that he will only prescribe T4 alone.

birkie profile image
birkieโ€ข in reply toshaws

Hi Shaw's๐Ÿ’“

I'm what way did he take a large dose of T3? Genuinely interested ๐Ÿ‘

I started on T3 after T4 did nothing for my T3 levels ..absorption is a problem for me, I started low on 10mg then eventually building up to 35mg ..then I took the next 5mg after my bloods looked like I needed it T3 at 4.5 the 0.80 ๐Ÿ‘ I'd not been feeling to good a few weeks prior to this increase but my symptoms were weeing alot especially at night, total thirst bad body bone pain insomnia I did also have palpitations and sweating it was through one of my thyroid bloods that I noticed my calcium was over range looking bk on futher blood work there it was again over range calcium!! GP sent blood work to endo endo did PTH and they were over range diagnosis primary hyperparathyroidism I'm sure you know my journey with this condition Shaw's๐Ÿ‘

Anyway the sweating and palpitations tremor ..were put down to my thyroid bloods the GP saying I was over medicated T3 5.6 TSH (range 3.10..6.80) TSH..0.05..(range..0.30..4.50) this I pointed out was not over medication ๐Ÿ˜  but it gave her a way of getting me off the T3 saying all symptoms were down to it!!

I came off just to show her..I was right nothing changed so I asked to be put bk on T3 took 6 months to do that as I needed to see an endo ๐Ÿ˜ 

So what I'm thinking is.. the amount of T3 was probably ok (Teva lactose free) I did have some stomach and bowle issues but no where near as bad as being on Teva T4.

I'm now bk to square one...AGAIN!! Thanks to the useless GPS , I've started on 10mg then I could only increase by 10as the capsules were 10s only ..now only 20s..(trying to resolve this with GP as I need 5s๐Ÿ‘) but I still have all the symptoms of a parathyroid problem (private parathyroid surgeon as identified a nodule in my neck waiting on pet chlorine scan at Liverpool ๐Ÿ‘) because the symptoms of a parathyroid problem present much the same as over medication it's flipping hard to distinguish what's what!! Like last night..no sleep off to the loo constantly ๐Ÿ˜ญ..bad body pain sweating, shaking my heart was doing funny stuff.. beating fast, skipping beats, my legs felt like they were humming..like when you lay on your mobile and it vibrates, I managed a couple of hours sleep, I'm on my sofa now with this awful vibration in my legs and feet, I have a tremors in my body my heart beats fast then bk to normal, sweating just feel awful, I'm sure it's probably my calcium going up again and nothing to do with the 20mg thyroid meds.

I dare not mention how I feel to my GP as I know the out come..off the T3 again ๐Ÿ˜  on the up side I'm having thyroid blood's done on the 31st Jan and PTH,cal vit D and a 24 HR urine calcium...it can't come soon enough Shaw's๐Ÿ˜ญ

DippyDame profile image
DippyDameโ€ข in reply toshaws

Thank you shaws

Right now I'm happier being in control of my T3 treatment because I understand what is going on and how to self medicate.

It's a crazy situation but the endo I saw insisted that, because my labs didn't suggest a problem with the (TRb) receptors, I could not have RTH. He would not consider that RTH has other causes and nearly hit the roof when I mentioned Gordon Skinner and John Lowe.

Thankfully I had faith in them, read extensively and decided I had to work it out myself. I now have an open minded GP who was not happy about this but agreed I have the right to disagree with the treatment I'd been given!!

She now leaves me to self medicate and this does not affect the rest of my care. I've even told her that CUTI and other problems I have are highly likely to be the consequence of damage due to decades of low cellular T3.

I'll perhaps in time again raise the issue of T3 medication with an endo but right now I don't want my now therapeutic dose to be altered by someone who hasn't got a clue!!

We all know what a rotten mess it is and how difficult it can be to cope with treatment that is wrong. The cost of T3 is, thankfully, reducing and that might help patients who need a lowish dose ...but until medics understand how to diagnose and medicate RTH I'm not hopeful much will change in that area.

Dillongirl profile image
Dillongirlโ€ข in reply toDippyDame

Wow, you appear to be on top of things. What I don't understand generally, is that the NHS appear to be on a health campaign regarding diabetes and cancer - rightly so - but appear to have a block about thyroid problems - which has such a knock on effect to one's whole health, productivity and happiness. Is it because thyroid issues are so diverse, or do those GP's who can't get their head around the complexities think thyroid patients are hypochondriacs? Well done for sticking to your guns and good luck with it all.

DippyDame profile image
DippyDameโ€ข in reply toDillongirl

Medics are fixated on the idea that the TSH test gives all the info required and that levothyroxine is the only medication required.

They overlook the fact that neither is actually true....and science proves this.

They also seem to forget that we are human and therefore, unlike machines, all very different with different needs

I had a conversation with my GP this morning, basically about another issue but inevitably the subject of T3 was raised. Despite the fact she no,longer advises me to stop self medicating with T3, she still adheres to the above view, which is what they are taught in med schools and how they are advised to treat hypothyroidism.

To deviate from those guidelines could put their registration at risk.

I don't altogether blame the GPs, it's the decision makers in power that need to see the light.

birkie profile image
birkieโ€ข in reply toyveh

Believe me it's been a real fight, my GP kept me on T4 for nearly a year, he chopped and changed it but my T3 was always below the, last was 1.5 I'm lactose intolerant and have colitis so I was having a problem with absorption issues, the endo looked over my last 4 month blood work and prescribed me the T3...since then my surgery have constantly wanted me off it and succeeded last year putting me bk on T4.I went back to awful bloods again bad bowles/stomach issues i told my GP I want back on the T3 he obliged, but I'm waiting for the same old crap to surface again....like the pharmacy saying they can't obtain them,and my GP trying to again pushed me off them๐Ÿ˜ ๐Ÿ˜ ๐Ÿ˜ 

TiggerMe profile image
TiggerMeAmbassadorโ€ข in reply toyveh

I've just been prescribed T3 and I'm in Gloucestershire?

Looking at the open prescribing thingy they prescribe it quite a lot

yveh profile image
yvehโ€ข in reply toTiggerMe

I am on a combination pill T4 and T3 this is flagged on my NHS App NOT TO BE DISPENSED, are you getting yours from your GP? If yes then I need to investigate this. Thanks for your input

tattybogle profile image
tattybogleโ€ข in reply toyveh

as in a combined pill (containing both T4 AND T3 ) ? if so that is probably why .

I don't think ? NHS anywhere in UK have those combined pills on their list of 'allowed' They do prescribe T3 tablets / capsules alongside Levo , ( IF you live in an area that allows T3 prescribing to new patients , and IF you can get an NHS Endo to agree you need it first ) NHS GP's can't prescribe T3 unless an NHS endo "ok"s it first.

yveh profile image
yvehโ€ข in reply totattybogle

Thanks for this, I will try and see my GP to restart the process? Don't hold out much hope time wise?

TiggerMe profile image
TiggerMeAmbassadorโ€ข in reply toyveh

Hi, not on combined pill, didn't know there was such a thing other than NDT, but a combination of T4 Aristo and T3 Roma, prescribed by Endo now issued by GP

TiggerMe profile image
TiggerMeAmbassadorโ€ข in reply toyveh

Ask for a referral and then keep checking for cancellations to get the earliest possible

yveh profile image
yvehโ€ข in reply toTiggerMe

Thanks, will do

TiggerMe profile image
TiggerMeAmbassadorโ€ข in reply toyveh

Pinged you a message in chat ๐Ÿค๐Ÿค—

SlowDragon profile image
SlowDragonAdministrator

But thatโ€™s rubbish

Teva tablets 20mcg cost NHS LESS than Roma 5mcg capsules

Teva 20mcg currently ยฃ51.54 per 28 tablets

Roma 5mcg capsules ยฃ55 per 28

Current costs in detail here

healthunlocked.com/thyroidu...

SlowDragon profile image
SlowDragonAdministrator

Daily dose liothyronine 40mcg

Cost comparison to NHS per 28 days

20mcg Teva = ยฃ103.08

5mcg Roma capsules = ยฃ440

waveylines profile image
waveylinesโ€ข in reply toSlowDragon

And they winder why the NHS is in trouble financially! ๐Ÿ™„ I thought the NHS were supposed to have sorted out these astronomical price differences? Such a large organisation should be getting it cheaper than the individual. I despair!! Big ohsrma must be laughing all the way to the bank......bet they make millions extra every year out of the NHS.

helvella profile image
helvellaAdministratorโ€ข in reply towaveylines

But it's only an astronomical difference because of the prescribed dosage form.

Roma 5 is ยฃ55. Same as Roma 20.

The price has effectively absolutely NOTHING to do with the amount of active ingredient!

waveylines profile image
waveylinesโ€ข in reply tohelvella

Not sure I understand Helvella. Your wrote " Roma 20 is ยฃ55. Same as Roma20. " Aren't they the same strength?

helvella profile image
helvellaAdministratorโ€ข in reply towaveylines

My typo - now corrected.

waveylines profile image
waveylinesโ€ข in reply tohelvella

๐Ÿ˜Š๐Ÿ˜Š

birkie profile image
birkie

Well as I just said in a post to DippyDame we on here know way more about this subject than GPS/specialist, ok this is what he said slowDragon..Teva are ยฃ155 per prescription never said what Roma price was only that Roma were a cheeper alternative for the NHS in my case.He would prescribe the 5s (Roma capsules)as my bowles/stomach trouble as come bk being on the full 20mg..also as I told him it would not be a good thing to trilate up by 20mg making it 40mg.. we trialate by 5mg!!๐Ÿ˜ 

So here's the thing...the pharmacist said he couldn't source any 10s only 20s...so if he had 5s why didn't he just ask if 5s would be ok for me?? I reckon it's because they can't obtain 5s either ๐Ÿ˜‚ so when my GP puts that prescription across for me....I bet you a working thyroid they can't obtain them๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚

SlowDragon profile image
SlowDragonAdministratorโ€ข in reply tobirkie

Go on NHS website here

nhsbsa.nhs.uk/pharmacies-gp...

Select

View January 2023 drug tariff online

In searchโ€ฆ.put Liothyronine

select top choice

โ€part VIIIA โ€ฆโ€

Scroll down to liothyronine list

Print out or take a picture of current prices

Hereโ€™s photo I just took of the page

Current prices NHS pays for liothyronine doses. Tablets v capsules
humanbean profile image
humanbeanโ€ข in reply toSlowDragon

I can't see the prices on your link.

SlowDragon profile image
SlowDragonAdministratorโ€ข in reply tohumanbean

prices are in pence

Roma 20mcg capsules - 5500 = ยฃ55

20mcg Liothyronine tablets - 5154 = ยฃ51.54

(Thatโ€™s Teva, Morningside or Mercury brands)

The eye watering one is 20mcg liothyronine powder for injection (in rare cases of Myxodema coma)

5 doses - 156750 = ยฃ1567.50 !

humanbean profile image
humanbeanโ€ข in reply toSlowDragon

Thank you, I hadn't realised that. :)

SlowDragon profile image
SlowDragonAdministratorโ€ข in reply tobirkie

his maths is rubbish if he thinks 8 x ยฃ55 for Roma is cheaper than 2 x ยฃ51.54 for Teva

birkie profile image
birkieโ€ข in reply toSlowDragon

Well he is a dumb ass slowDragon ๐Ÿ˜‚ what the hell was he looking at then? To give me the Roma 5s when I clearly asked to be put back on Teva..the cheeper ones๐Ÿค”.As we both agreed the other day he should just retire slowDragon ๐Ÿ‘

SlowDragon profile image
SlowDragonAdministratorโ€ข in reply tobirkie

print that out photo out of January NHS drugs tariff

Give him a copy and ask for Teva 20mcg tablets

2 per day

birkie profile image
birkieโ€ข in reply toSlowDragon

That will happen slowDragon as I'm pretty sure my pharmacy won't have the 5s๐Ÿ˜‚๐Ÿ˜‚ it's just a pigging fight we have to go through to get medication we need๐Ÿ˜ ๐Ÿ˜ ๐Ÿ˜ 

NIKEGIRL profile image
NIKEGIRLโ€ข in reply toSlowDragon

itโ€™s not just his maths that is rubbish.

Hylda2 profile image
Hylda2

I feel for you. My cardiologist said I needed a chest x-Ray. Dr told me i needed a face to face appointment! What a waste of time and after three weeks and a lot of prodding Iโ€™m still waiting for my referral for a chest x-Ray and people are crying out for appointments

birkie profile image
birkieโ€ข in reply toHylda2

It's discussing ๐Ÿ˜ ...I'd been back and forth to my GP about my calcium going over...I know when it is by the symptoms,I was taking to A&E last year with the symptoms my calcium was 2.67 first time and doc said "ho it's only slightly over range"๐Ÿคฆ second time Which felt worse than the first A&E visit my calcium was 2.59..he had no idea why I was so unwell eventho I pointed to my PTH being over range with top end calcium , again I was taking to A&E a 3rd time the doc tested my urine I had calcium crystals in it so I managed to get a kidney scan... been waiting for a kidney scan for ages with my GP๐Ÿ˜  so being taken to A&E i got the kidney scan sooner๐Ÿ‘ they found I'd passed a kidney stone ๐Ÿคฆ๐Ÿคฆ probably not a good way to get the scan...but it was better than waiting for GP to sort it๐Ÿ‘

waveylines profile image
waveylines

Awww feel for you Birkie. Welcome to the world of the expert patient. We are generally hated & once they get over their hurt egos they find it easier to go with you.....due to pester power. Especially those follow up.letters that you can write and instruct to be put on your medical file. I had come to an "understanding" with my GP surgery doctors.....ie they're probably drew straws to see who got me pre pandemic. They had become quite calm and understanding.... But they have all retired/left so now a new young raft have come in & am back in the fray all over again. Focus on the outcome you want Birkie, wear a tin hat & hang in their......be polite & calm and totally respectful of them at all times...they're not sure what to do when you are like that, then once they've finished ranting & you're still sat their calmly smiling kindly at them....and doing broken record, they are flustered. You will wing through....in the end.

And frankly you must've done very well as he is organising everything you asked for. I suspect the Roma capsules are his/her way of getting back at you. A little party protest. Just follow it through. Let him have his little protest & ask for the Teva.....you will end up with some back up capsules!

You are not alone.....I was told I'd got diabetes with no follow up as I'd cost too much money.....my blood test that he quoted was normal.. Not even on my records. Ego needed soothing. Bless! Not!

You'd think they'd be far too busy for such nonsense!

Well done you!! X

Alanna012 profile image
Alanna012

During the tail end of the pandemic I went to visit a neighbour who lives near me, she is in her eighties. She lives alone. No relatives, her only child died years ago. She came out in shingles was in a bad way, yet couldn't get a GP appointment. Finally another neighbour went into the surgery on her behalf, and a doctor rang her and diagnosed it over the phone. Didn't make a visit.

And that was the only call she ever got.

shaws profile image
shawsAdministratorโ€ข in reply toAlanna012

That's an awful experience and it is comforting to the patient that the 'expert' has done his/her best to see her and also to ensure that she was prescribed something that would ease the pain and/or discomfort.

Have most GPs now decided that they will only consult/diagnose by phone rather than home visit.? Are they afraid they will be affected by visiting a patient?

What is the difference between a job or profession?

Every job is not a profession, but every profession is a job.

Learning And Development

Being in a profession encourages you to study and keep learning even if you have a job. Medical professionals have to stay up to date with the latest in the medical community be it medicine, vaccinations or procedures. Doing your job well relies on how willing you are to enhance your skills. Doing your job well relies on how willing you are to enhance your skills.

harappa.education/harappa-d...

birkie profile image
birkieโ€ข in reply toshaws

That's totally true Shaw's๐Ÿ‘Although my father was not a medical professional he was a TV engineer and did is training in the early 70s I don't know if you remember what the TVs looked like bk then but compared to what we have now it's Flintstone territory ๐Ÿ˜‚

Anyway as technology progresed from the standard 70s TVs my father had to keep up with the current new tech..the first being video recorders..VHS beta max! he was sent on a course to train how this new technology worked taking these apart and studying there components, then TVs got better so off on another course he was always learning because tech moves on.

In the same way we are learning more things about the human body than we ever have.

So why is it as you pointed out our GP and specialists are still clining on to old out dated method of treating us?? ๐Ÿคท

shaws profile image
shawsAdministratorโ€ข in reply tobirkie

I do remember what TVs looked like in the '70s. :).

I have heard nonsense from some GPs. Even though my TSH was 100 I was told there was nothing wrong with me!

I find it surprising that few GPs can diagnose/treat a patient who is hypo as did Dr .Peatfield and Dr Skinner (Now both deceased) and they didn't need blood tests as they took account of patients clinical symptoms too.

They both had good backgrounds due to how they were trained as medical juniors. Dr Peatfield resigned his Licence due to the fact that he was being pursued for doing as taught but was able to 'advise' those who consulted with him and restoring theirhealth. Could not prescribe.

We all know our child isn't too well by how he/she is behaving.

I think the training of how GPs (re thyroid hormones) at present was/is unsatisfactory and one of mine phoned to tell me that I had no problems at all - even though I felt very unwell and TSH was 100. My body couldn't function as I was not diagnosed or prescribed replacement thyroid hormones.

A few years ago I read the Last Testament of someone who could no longer face life due to the suffering she was undergoing due to being undiagnosed.

dailyrecord.co.uk/news/real...

Her life was saved by Dr Gordon Skinner who was a kind and knowledgeable doctor and who had regular consultations in Glasgow and Birmingham and Lyn Mynott of TUK also assisted in preparing evidence for the Glasgow appearance.

birkie profile image
birkieโ€ข in reply toshaws

Our doctor's and endos should be totally ashamed of themselves in the treatment they give us๐Ÿ˜  but I fear they aren't!!I think they are just plodding on going in doing a job then going home, and sticking by their guidelines ๐Ÿ˜ 

I can't imagine how your GP didn't think a TSH of 100 would not present with symptoms ๐Ÿคฆwhere on earth do these people train to be endos... A abattoir...๐Ÿคฆ๐Ÿคฆ๐Ÿคฆ

shaws profile image
shawsAdministratorโ€ข in reply tobirkie

'The Endo I eventually consulted I assumed he replaced the T3 as about 2 months later that's what I have restored. I am very thankful and only need 20 mcg daily that has resolved any remaining symptoms.

Milkyway88 profile image
Milkyway88

I understand Javid is Morgan Health, links to JP Morgan investment bank, to which he was adviser just prior to becoming Health Secretary.

MMaud profile image
MMaud

When my surgery appear tardy in responding or actioning something, I copy the relevant correspondence, write a covering letter, saying something like, I am concerned it has got lost, and mark it Delivered by Hand, which I do, although I am content to post it through their letterbox, when I next pass.

Then I call a couple of days later and start chasing, explaining my concerns, copy letter et al. If I then need an appointment to discuss, in whatever format, I don't allow it to end until I am content with the outcome.

Some GPs take the biscuit and others plain incredible.

Lilylui profile image
Lilylui

I have Roma 5 โ€˜s

Brightness14 profile image
Brightness14

I am not jealous I rang my surgery at 9am this morning and have a face to face appointment with my regular GP this afternoon. I also get T3 free of charge. However, I live in France.

The meat is very fatty and the celery is awful, but the health system is great. I can live with that.

SarahJane1471 profile image
SarahJane1471โ€ข in reply toBrightness14

how does the health care system work? Is it free? Genuinely interested

waveylines profile image
waveylinesโ€ข in reply toBrightness14

Am soooo jealous Brightness14.

shaws profile image
shawsAdministratorโ€ข in reply toBrightness14

That's wonderful and am sure you will find your 'sweet' spot soon.

Brightness14 profile image
Brightness14โ€ข in reply toshaws

Thank you

Brightness14 profile image
Brightness14

Well it's very regimented everywhere in France works to the same principals. My health is free because I have no Thyroid. Everyone has a Carte Vitale which is like a bank card.

This card is used at the GP's Pharmacy, and Hospitals. Most people have to pay but 70% is reimbursed back into the bank account. GP's fee is 25 euros for around half and hour but is reimbursed at around 60%. My scans, MRi, Surgeries are all free and for people with cancer or lifechanging problems. Before my Thyroid was removed I paid about 28 euros for a scan this was when I arrived here in 2015 as I had no Carte Vitale. My operation was around 700 euros which included all the appointment, surgery, blood tests etc. Quite complicated to explain. District nurses still attend the infirm and elderly too.

SarahJane1471 profile image
SarahJane1471โ€ข in reply toBrightness14

so the card is like a โ€œreverseโ€ credit card? Or do you have to put money on the card first?

birkie profile image
birkieโ€ข in reply toSarahJane1471

No your own current account card or credit card, the hotel's we stayed at we paid for the room with our cards , they keep your details so if you trash or break anything in the room they take a charge directly from your appointed card๐Ÿ‘One time my then partner got a ยฃ100 charge noted on his bank statement,he queried it as we definitely didn't trash the room in anyway, turned out they had a burst pipe within the room , they thought my partner and myself had poured water over the carpet ๐Ÿคฆ he got the ยฃ100 re embursed ๐Ÿ‘

SarahJane1471 profile image
SarahJane1471โ€ข in reply tobirkie

sorry my question was to Brightness14 about the Carte Vitale in France ๐Ÿคฆโ€โ™€๏ธ๐Ÿคฃ.

birkie profile image
birkieโ€ข in reply toSarahJane1471

๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚ ho that's my bad vision ๐Ÿ˜‚ sorry..๐Ÿ‘€

birkie profile image
birkieโ€ข in reply toSarahJane1471

Mind you I'd be interested to know how long it takes to re emburse you the money in France? As it took the hotel a fortnight to re emburse my partner ๐Ÿคท

Brightness14 profile image
Brightness14โ€ข in reply toSarahJane1471

I didn't make myself clear sorry. Say when you visit the GP he swipes your card then you have to pay him 25 euros. The national health service then puts back into your bank account 70 % of the 25 euros reimbursement. I pay nothing because when my card is swiped it comes up as Gratuit i.e. free of charges. No money is put on the card first you pay at every visit. In hospitals you have to show your carte vitale first at the desk this is then swiped and you are charged as you leave. Every so often you are sent a statement from the health service, a record of all your payments and reimboursements. For a visit to the GP the total cost would be around 8 euros.

waveylines profile image
waveylinesโ€ข in reply toBrightness14

Doesn't processing payment & reimbursing you cost the powers that be in France 8 euros?

Brightness14 profile image
Brightness14โ€ข in reply towaveylines

Because I am still a British subject the UK actually pays for all my health abroad here in France.

waveylines profile image
waveylinesโ€ข in reply toBrightness14

Ahhh....I see. So would the French have to pay the full cost then?

Brightness14 profile image
Brightness14โ€ข in reply towaveylines

No the French would pay upfront and then receive either a 60 or 70% reimbursement into their bank account.

Paying a total of around 8 euros to visit a GP. Every French person with a lifelong health condition pays nothing, it's free. If it's a younger person in work they can top up with a mutual insurance policy which pays difference, it's complicated but it wouldn't be French if it were not.

Shelleyblue profile image
Shelleyblue

Your GP lied to you about TEVA being more expensive !! The issue is that TEVA has been put on the banned list for the NHS to buy. ROMA is actually more expensive but for some reason the NHS has decided to change everyone to ROMA capsules for liothyronine. :o I was also on TEVA and splitting my tablets and then I was accused of not following protocol and that I wasnt taking my meds as prescribed !! I was accused by the CEO of my hospital !! :o

birkie profile image
birkieโ€ข in reply toShelleyblue

I don't know if this is true, but I thought teva was band in France something to do with the filler giving bad side effects ๐Ÿคทโ€โ™€๏ธYeah I got the same response by endos and gp but about teva T4 the lactose free one, I was still having absorption issues and bowle /stomach issues the endo accused me of not taking it properly or not taking it at all!! When the issue was actually absorption, when I got on T3 my T3 rose.. But as I pointed out to my gp.. He can write out all the prescriptions he wants.. 5s..10s..20s...but if the pharmacist can't obtain the lower ones 5s..10 how can I spilt a capsule if its only 20s I can get? .. You don't trilate up in 10s or 20s it usually 5s...๐Ÿค”๐Ÿคฆโ€โ™€๏ธ

helvella profile image
helvellaAdministratorโ€ข in reply tobirkie

So far as I am aware, Teva levothyroxine has never been available in France.

Maybe you are thinking about Merck Levothyrox? That had its formulation changed from lactose to mannitol. And Merck had to produce a special batch using lactose. But that was a simple temporary measure.

Patients in France now have some alternatives.

The only liothyronine usually available in France is Sanofi Cynomel.

birkie profile image
birkieโ€ข in reply tohelvella

Yes wasn't totally sure it was teva, but knew it was some T3 drug.. Wonder why teva isn't available in france? And does anyone know the reason behind the ban on it... ๐Ÿค”

helvella profile image
helvellaAdministratorโ€ข in reply tobirkie

I don't know of any ban on Teva T4 or T3 in France.

That doesn't mean there is no ban. But I don't have any information about bans in France. (Other than desiccated thyroid being illegal.)

birkie profile image
birkieโ€ข in reply tohelvella

The very thyroid drug that was first introduced, NDT.. So they ban NDT to introduce synthetic meds.. ๐Ÿคฆโ€โ™€๏ธ OK some can get along with synthetic medicines, unfortunately I can't, I've suffered for years with antibiotics, pain meds, some cold medicine because they contained lactose and other things... I can't stomach anti inflammatory drugs which I hate as I have arthritis and bad bone pain, my gp keeps giving me opioids, I don't take them unless I'm crying in pain... They are addictive ๐Ÿ˜ž

waveylines profile image
waveylinesโ€ข in reply tobirkie

You can get ndt on the NHS....am one of those who does.....but its a long road & you have to be prepared to sit in for the duration! Why is that the case? I have no idea. It does feel like they want to keep people ill so they have to have lots of other drugs.....lol.

birkie profile image
birkieโ€ข in reply towaveylines

Might have something to do with big pharma ๐Ÿคท it boggles the mind just how much money they made from the pandemic ๐Ÿ˜ 

waveylines profile image
waveylinesโ€ข in reply toShelleyblue

OMG.....that's awful Shelleyblue. I must admit there does seem to be some obsession that we not taking our meds correctly. Anyone with a bit of common sense would know that if you have Hypothyroidism you will take your meds.....but to what you need, not to what some so called proffessional who doesn't have to live with the consequences of their judgements. That's more likely their beef! ๐Ÿ™„

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