What's happening with the parliamentary enquiry... - Thyroid UK

Thyroid UK

112,247 members130,562 posts

What's happening with the parliamentary enquiry into the price hike of T3?

Limbolass
Limbolass

Did anything come of it?

dailymail.co.uk/health/arti...

81 Replies
oldestnewest

*Inquiry*

Current state of the investigation by the Competition and Markets Authority - painfully slow progress!!

gov.uk/cma-cases/pharmaceut...

Advanz Pharma are doing a Trump and delaying the proceedings as much as possible.

Batty1
Batty1 in reply to holyshedballs

Doing a Trump?

holyshedballs
holyshedballs in reply to Batty1

yes

delaying the proceedings like Donald Trump does. Getting political so I'll stop here. This is a thyroid site!! I've told my self off.

Batty1
Batty1 in reply to holyshedballs

Just curious thats all

Why can't other pharmas make it for UK?

That is a really good point!!

If a company could manufacture T3 cheaply, it would not be on the list of NHS England Items which should not routinely be prescribed in primary care.

I suspect that the BTA and the PresQuipp recommendations are scaring potential manufacturers away from large scale production. Who would want to make T3 when some professional bodies are recommending that its users change from T3 to T4, another product?

More reason for the CMA action to succeed - to stimulate some fair competition in this market.

helvella
helvellaAdministrator in reply to Limbolass

I don't think there is any fundamental reason a pharmaceutical company couldn't make a liothyronine (T3) product and launch it in the UK.

They would, of course, have to go through the usual licencing procedures.

They could even just decide to import an existing product.

The question has to be whether a company would ever see it as a profitable product. That assessment has to include "If we can do it, so can anyone else" which implies little protection from other competitors. And how they would get the product manufactured. For any but existing manufacturers, this would probably have to be a contract manufacturing arrangement. And how they would get the product distributed - not difficult for existing companies which have distributors within the company group, or already have deals. Possibly a killer if it were a new company.

I find it interesting that Morningside have taken an extra step in launching 5 and 10 microgram tablets. That gives their product a Unique Selling Point (within the UK market). And they are the small outfit competing against big boys Teva and Advanz (Mercury Pharma).

I don't think any thing that relies of parliament or its committees is doing much at the moment as most of them are working from home. Even court cases have been suspended, so I doubt it's a high priority

Everything takes an age for any authority, governments/councils etc etc to do anything at all. I often wonder if they may delay things just so they can say that the longer it took the harder they worked, I certainly don't believe that and have given up trying to work any of it out these days.

shaws
shawsAdministrator in reply to BrynGlas

They were 'quick off the mark' in withdrawing T3, without any notice or previous warning. Leaving thousands of patients shocked and worried and unwell with an immediate withdrawal.

It wasn't the patients' fault that there was a withdrawl as many need either T3 added to T4 or T3 alone. There's no substitue for T3 as it is the Active Thyroid Hormone that runs our body from head to toe and heart and brain have the most T3 receptor cells.

I am more unwell on levothyroxine than before I diagnosed myself when TSH was 100.

It seems that those who studied to become Endocrinologists have lost their way in how to diagnose/prescribe in order for hypo patients to recover their health. Our old-fashioned doctors could diagnose a hypo patient from afar and if they shook our hands they took notice if hand was cold.

Millions do o.k. on levothyroxine, worldwide but I'd like to know what 'extras' they're prescribed to relieve remaining symptoms.

Rapunzel
Rapunzel in reply to shaws

You say remaining symptoms, shaws but my symptoms of painful joints and galloping weight gain only began when I took levo for a year, subsequent to being diagnosed. Some days I could hardly move my fingers and had difficulty walking. For some of us, levothyroxine causes a heavy burden of ill health and my belief is that many 'thyroid symptoms' may be adverse reactions to levo :)

shaws
shawsAdministrator in reply to Rapunzel

For me, too, levothyroxine was more poison than hormone.

I was forever in and out of the A&E due to severe palps. Cardiologist was puzzled and was contemplating putting implant in heart 'to see what was going on'.

Just then T3 was added to T4 and all heart symptoms disappeared altogether then I took T3 alone and it was heaven against T4 (hell).

Rapunzel, it seems the medical professionals don't actually understand that some people cannot and do not feel well on levothyroxine but GPs probably prescribe something else for remaining symptoms and also costing the NHS more. instead of ensuring the patient can trial options as used to be the case, GPs can no longer prescribe anything but T4 (levo). Patients struggle on and on unless the find a sympathetic Endo but they also have been told not to prescribe T3 if possible. Many members have been very disappointed when, finally, getting an appointment with an Endo and they leave without some T3 being added to T4 or T3 alone.

The fact, too, that the 'organisation' withdrew NDT which has been safely used since 1892 and that was the withdrawn through 'false statements' being made about it.

Dr John Lowe wrote to the Association with a Rebuttal and for three years requested a response (which were ignored). Dr Lowe died of an accident and he was always on the side of the patients and stated that levo became No.1 prescription due to 'payments in kind' to doctors when it was first being introduced.

drlowe.com/thyroidscience/C...

jgelliss
jgelliss in reply to shaws

Amazing . Same story different characters. I could have written the same thing from my own experiences after my TT. Only when T3 was added with a lower T4 did my palpitations finally resolved with a few more symptoms.

I'm just wondering how much longer will it take Dr's *Get It* that T3 is a very vital component with or without T4 for our well being.

BrynGlas
BrynGlas in reply to shaws

What year was T3 added then shaws, because my GP kept telling me that I was already on the only medication possible. Though NDT should have been available shouldn't it, at the end of the 90's?

It sounds to me as though there were people who could make money out of the Levo introduction, but not from NDT. Similar to cereal and sugar manufacturers not liking the Atkins diet because they could lose money if it took off!

I bet money was behind it somewhere.

Why can we not make our own T3 in this country? I can't understand why not. At least we could do away with the profiteering that way

london81
london81 in reply to BrynGlas

i understand there are some complicated tie in rules that mean uk could only buy from concordia/advanz or whatever they are called, that is the subject of said enquiry. the pharma company took it to the high court to try and halt the investigation but failed . i’m a lawyer by trade so i’m glad to see the high court did the right thing here.

BrynGlas
BrynGlas in reply to london81

Thank God for that.

So Pharma is one of the 'baddies' who want to get all income from UK T3 government etc at the price they set? ie extortionate?

So that is why it costs so much here now?

I found mine from one of the Eastern countries, will have to get some more. I have only just started it and can only hope that it works. I don't know how much T3 is used in the uk. I know the official version is that it is rarely used but I will take that with a very big pinch of salt because the Government wouldn't dare admit how many are affected by Levo, there would be hell and high water if there was any justice in this world.

What say we go and protest like the Brexiteers and Stayers did for so long? LoL I would be very willing as long as it was dry and warm weather and I could wear a reasonable size in jeans rather than size 22 please God???

BrynGlas
BrynGlas in reply to london81

Yes, that was what I thought must have happened when it was first set up for supplying T3 here. I would have thought the contract or whatever should have been vetted/examined/checked better than it obviously was when it was set up. They saw us coming it seems

Limbolass
Limbolass in reply to london81

Thank God for that. So now what?

shaws
shawsAdministrator in reply to BrynGlas

It must be about 10 years ago. It was an amazing feeling (that doesn't happen to everyone mind you) plus relief. Sleep interfered with severe palpitations that meant sipping ice-cold water plus wrapping ice-cold wet towel around neck until pulse reduced.

I had some T3 added to T4 and then after next blood test was told to stop taking T3. I said I couldn't do that so I had to reduce T4 and that I didn't mind.

I think that's how we, the patient, should judge if we're on a sufficient dose by 'how do we feel'. Answer should be I feel my health is now normal and am able to have a normal life.

BrynGlas
BrynGlas in reply to shaws

I can hardly imagine how you felt with a TSH of 100 Shaw, no wonder you needed ice packs and God knows what. And thank God you had your husband to rely on too. It would have been scary to be alone at that time.

My TSH in 2005 was 0.02 on a scale beginning 0.27 - 4.2 (2005 was the first test result I found of only 6 in my medical records)

2005 0.02 R .27 - 4.2

Feb 2019 0.08 R .35 - 5.5

In Feb this year it was 0.45 R .35 - 5.5

15th September 2020 0.24 R .35 - 5.5

So my TSH seems to have been low for years with Levo I would have loved to have seen my test results from when they diagnosed me, but they are not to be found apparently.

My husband would have been as useful as a wet lettuce, even when he was well, he never so much as made me a hot drink if I was ill. We parted in November 2018 and I honestly had had no idea of how unhappy I was with him. I would never go back.

Anyway. I read what you said about Dr Lowe taking his T3 in the early hours in one dose, so I did that today. Took a whole 25mcg tab along with my Levo at 4.45 this morning. At least it is over and done with for the day.

No negative reactions, in fact I don't feel any different at all, so no palpitations, which I thought I might get. So what I think I will do now is to carry on with 1 x 25mcg Tiramel along with my 150mcg levo in the early hours.

Can I ask your advice of how long I should leave it at that single dose before deciding to reduce levo or uncreasing T3? Doc wants me to decrease Levo now, but don't want to go there until T3 might be making its presence felt, ie in the way I feel.

I want another blood test in 8 weeks.

I have been supplementing B12, vit D, magnesium, waiting for result of testosterone test now to see what GP wants to do about that because they are expecting it to be too low. Don't really want to take anymore hormones, but if I have to I will. Symptoms of low testosterone are scarily similar to hypothyroid though, so not a clue what is happening there or how it has affected me.

I will understand if you prefer not to be advising me because I know we only have our own experience to judge how we manage things. However I don't believe that I would have much more idea of how to get this sorted if I had been to medical school either.

BrynGlas
BrynGlas in reply to shaws

I have been on Levo since 98/99 though and never happy on it. Was refused access to an Endo because I was told that my results were 'normal' on testing, but was never told what the results were, just normal or low - take extra Levo.

I have lost 20 odd years by existing with the symptoms of hypothyroid, the one sympton which would have the ability to improve my mood is weight loss, though I have had everything you can think of with it.

I was 10st 3 lbs for most of my adult life and I have been as high as the low 15sts, and 13 st now

That really is the thing that I would choose to change because this body that I have now is not mine at all. I have managed to find some Tiromel and have started taking that alongside Levo, but getting my bloods tested and with my GP patently not amused, it has caused hell.

I have had to complain to the Health Board, my MP and my Assembly Member (I am in North Wales) and I am really wondering if it is all worth it to be honest.

I had to put it out of my mind for a long time because I was driving myself and my family insane and getting nowhere. I really didn't start to think about thyroid again until last July when I started to gain again, the penny dropped and I was back to thinking that there has to be something that can give me something like a life again.

But is the complaining worth it? It doesn't feel as though it was worth it today that's for sure.

shaws
shawsAdministrator in reply to BrynGlas

We get even more worked up when we have members on this forum who are more knowledgeable than many of the Endos or GPs.

Don't worry about females in this photo as men to can have the same complaints. It will also work for males I feel, and keep in mind I'm not medically qualified.

ttps://stopthethyroidmadness.com/hypothyroid-photos-before-after/

We are less frustrated when we start to treat ourselves although if I was you I'd still get levo from GP and add some T3 to it. I am also not medically qualified but levo was awful and I improved on T4/T3 but have taken T3 only for quite some time now.

One of Thyroiduk's Adviser (now deceased through an accident) only took one blood test for the initial diagnosis and thereafter it was small increases in dose until patient felt well. I shall give you one of his links.

tpauk.com/main/article/the-...

BrynGlas
BrynGlas in reply to shaws

Oh yes, that is what I have done shaws, chopped my tiramel into 4 and took 3 different doses yesterday 8 hours apart, 2 doses today. I even set my alarm and take my levo and tiramel for that one dose a day at 4.45am that will happen everyday now. Nothing to report as in any differences yet, but only had my first T3 on Friday last. I can only give it a try can't I? It is more than a GP has done for me anyway.

My GP wants me to reduce my levo because it is over top range but he has never told me to reduce dose before when it has been at a similar level or above I believe he is only going through the motions of that at the moment because he is well aware that I have complained to my Health Board, MP and Assembly Member having copied them all into each message I have sent to him or the Practice Manager. I told him I have nothing to hide and had been forced into treating myself because no GP has been willing to help me to date ie 21 years minimum.

He has at last got his finger out in the surgery though. He is actually seeing patients face to face in there and there is a second GP seeing patients face to face too! I was amazed

BrynGlas
BrynGlas in reply to shaws

I am already there, thank you. I so want to lose weight, I think I could live with the rest, a weight loss which lasted is all I really want, I have lived with the rest for so long that I am used to the headaches/vertigo/sleeplessness/nail loss/hair loss, etc etc but I want my body to resemble what it was.

I am not in the right body and can't take that. I have even been told that I need to accept aging because I couldn't stop it! LoL

We all need an element of control in our lives don't we?

shaws
shawsAdministrator in reply to BrynGlas

We need doctors and endocrinologists who are - first of all sympathetic and knowledgeable, who are also permitted to prescribe what suits the patients, whether it be levo, T3/T4, or T3 alone. Also NDT (natural dessicated thyroid hormones) should be reinstated as it is the very original replacement, since 1892 until it was removed due to lies by those who we'd imagine knew better than to 'pull the wool over our eyes' causing immense worry and stress to those patients who relied upon it as it restored their health.

Those who could afford to source NDT did, but now it has become practically impossible. Probably due to the fact that the Pharma Companies don't sell sufficient nowadays to make a profit.

Dr Lowe stated it was the greed of Big Pharma (in USA I presume) who paid medical personnel to prescribe levothyroxine alone instead of NDT which contains all of the hormones a healthy gland would have. Would it have been pointed out that with levo (T4) would have to convert to T3, whereas NDT contained all of the hormones a healthy gland would have.

Dr Lowe also took T3 alone, 150mcg in the middle of the night, so that nothing interfered with the uptake (he was 'thyroid hormone resistant'. He stated that one daily dose saturated all of the T3 receptor cells

I know many people do fine on levo but they wont be on this forum looking for help/advice.

My experience on levo was worse than before I diagnosed myself (TSH 100). My husband was the person who had to deal with my awful palpitations during the night (when on levo) while I wrapped ice-cold towels around my neck till palps reduced.

I pity people who live on their own and have to deal with all the unpleasant symptoms themselves. It can be scary.

A number of researchers have found that a combination of T4/T3 can work for many people. Yet it would seem that the Endocrinology in the UK don't seem to read scientific evidence at all or listen to their patients especially when they withdrew T3 and NDT without notice and causing so much stress to their patients which could have been avoided.

I hope you get to your optimum dose quickly and relieve your symptoms.

BrynGlas
BrynGlas in reply to shaws

If my trial of splitting my T3 into 3 doses doesn't work, I can turn to having the day's dose of T3 and Levo all at once and then to increase or decrease that as necessary. It would be easier, but I am wary of getting palpitations etc. But I will certainly give it a go if I need to adjust doses.

I want to get sorted out, I am willing to put myself out in order to lose weight or in any way at all if it might help me to get well. I can but hope to have kicked the GP's *ss enough to remind him who he has a duty to and to get my blood tested regularly in order to keep things in order. He is trying to make me reduce Levo, because FT4 at 17.9 top range is 17.00 here, he says it is too high.

I have had to point out that it was 17.4 in the same top range of 17.00 in 2019 and he didn't ask me to reduce dose then. I also told him that apparently that 2019 test was the only test filed/recorded in my records since he took over the practice at least 5 years ago.

He knows I am complaining to everyone and I copy my complaints to everyone who I think needs to know what has been going on.

So I suspect he is taking more notice of my results these days and acting a little differently too, because he may get caught out if he doesn't at the moment.

He resents me asking questions about what tests I can or cannot have done for instance. I have had to do this by letter, but he complains of having to take time to read my letter and accuses me of complaining of merely a "swollen finger" in my letter. If that doesn't show the calibre of the GP here, what does?

In my tests last week, I had requested that Sex Hormone Binding Globulin be tested because I read somewhere that it might be important for patients who were not doing well on Levo.

He rang me on Friday last to ask me first why I had requested that test, so I told him. He told me then that the result was giving concern because it was very high.

I had to ask what could be done out about it because he wasn't going to tell me unless I asked and I had my testosterone blood test yesterday. Apparently my results should be in this morning but I am not going to ring up and ask , if it needs addressing he can ring me and discuss it with me, I will not kow tow to the man any longer!

Just as I added the last exclamation mark, my mobile rang. It was the GP I answered it but said that he had rung me on my mobile whose signal inside the house was dire and he offered to ring on landline instead, which he did.

You need background, sorry. Got my test results last week, but the vit D and Ferritin were not on the list. I assumed that they had not been done and asked in an email (copied in the hoard of need to knows of course) could they be done in my blood test that was taken yesterday. Had had no answer to the message. Asked the nurse who was taking my blood tests was she taking my vit D and Ferritin and she got impatient with me, Oh Sandra you have already had it done!! So there was me knowing I had not found either on the result list just said ok, I will check again. Got home, took photos of my results, sent an email itemising the list of results on each page, told them to please see the results taken in Stoke in February and in which I could clearly read vit D and Ferritin results and said please tell me where on earth these vit D & Ferritin were, because either it was in code or some sort of gobbledigook, I may be old but I am still able to read and write and if you could possibly see those results show me where they are, then send the ambulance to pick me up and section me, becayse I cannot see them!!!

The GP had rang me to tell me ........... that the D & Ferritin were not unfortunately included in the results!!! YeeSsssss!!!! Get in there.

I don't like arguing, I haven't got the energy for it, but I have proved beyond a shadow of a doubt that that man is not serving his patients well.

This is the second time that I have caught him out in full view of his employers and made no bones about it. Must go get my results now. Sorry it was so long

shaws
shawsAdministrator in reply to BrynGlas

Dr John Lowe was an expert in the use of T3. He himself took T3 in the middle of the night. He didn't split doses but took one daily dose as he stated the the T3 receptor cells have to be saturated and then that one dose can have an affect for up to three days. He himself took 150mg of T3 in the middle of the night when he awoke.

You start on a small dose, and then every week or two add 1/4 tablet to that dose and so on until you're symptoms are resolved. If feeling 'too much' reduce to previous dose and that should be your daily dose.

Keep in mind I'm not medically qualified.

BrynGlas
BrynGlas in reply to shaws

Well there is Paul Robinson too of course.

holyshedballs
holyshedballs in reply to shaws

Please be careful when using "they". You could be referring to anybody

Regulators did not withdraw T3. T3 has not been withdrawn.

PresQuipp an independent body that was not part of the NHS but is funded by the NHS wrote its own guidance on what they considered to be drugs that could be taken out of NHS prescribing. As we all know, this was poorly researched and the so-called guidance was bad. NHS Engalnd based its national guidance on PresQuipp and this was taken to task by this group and even the BTA by actions to refer thamtter to the Govt and the Scottish parliament.

It must have been bad for the BTA to join forces with the thyroid patient support groups.

Nevertheless, a complete withdrawal was not in place and is still not in place.

What is happening is that CCGs and Trusts are misusing the bad guidance to cut costs by attempting to swap T3 for T4, even contrary to the so called guidance. This bad guidance had caveats that T3 should still be given to patients who had a clinical need for it.

This is a different matter to withdrawing T3. It is restricting T3

It is bad medicine and bad medical practice.

shaws
shawsAdministrator in reply to holyshedballs

Thanks for your response. :)

Agreed. But we have no hope of being prescribed T3 or NDT, that is what is happening and the government has been cute enough not to have totally 'publicly disconnected' any possibility of getting hold of T3/NDT no matter how ill a patient is and that means that hypothyroid patients who are unable to use Levo to get well, are left to struggle along, getting worse and worse. Dying by degrees.

I now have got a lot more hormone and vitamin defficiencies, than I had in the 90's when I was first diagnosed I believe.

It appears to me that the government are covering their backs:-

denying the number of people who are not able to get on with Levo,

denying that they want to keep us out of the way and hidden

denying that T3 /NDT is unavailable to us

denying that so many of us are having to pay for our blood tests and source and finance our own medication.

Patients showing signs of being hypothyroid now are having to jump through many hoops in a fight to get diagnosed and finding it nigh on impossible because reference ranges are apparently being increased. I could notvtell you where to find the proof of that, but we are seeing so many people on HU who can't get diagnosed it has to have some inkling of truth about it.

So it was found that the money grabbers started taking on these tactics, the people who have been continually let down are those who are ill and for who levo is a poison, and we are still waiting to see some light at the end of the tunnel.

They have even changed the tests so that TSH is the only test available in the many areas and I am no expert, but I know enough to realise that TSH is unimportant at least in my case, because I have high T4 and low to mediocre T3, which is I think what I need.

'They' - Health Boards? Councils? Government? NHS? Nice? Are trying to stop testing of FT4 and FT3 Add in the liklihood that we can have very little hope of getting hold of T3/NDT unless we find and fund it ourselves

We are being punished for having been unfortunate enough to have discovered that we are ill.

There seems to be little training in the endocrine system available to medical students these days too. Minimum training in Endocrinology as a GP and then they are taught that the only thing that needs testing to identify a Hypothyroid patient is TSH which is definately not the case, certainly in my case.

I have been trying for 11 months to teach myself about my illness and that is something that an elderly woman should not have to undertake. We are playing Russian roulette with our lives and I was never keen on gambling.

My GP is totally at odds with me, because I have had the impertinence to disagree with him and I have finally had to complain to him and as many people/organisations as possible in order to try to shake someone somewhere into helping me get the treatment I begged for when I first realised that Levo and I were never going to get, along over 2 decades ago.

I hope I don't come across as being hostile in my messages, but I am struggling to understand how the CCG's and Trusts who are following this restrictive T3 practice can get away with it? If I break the law I will be punished, so how can these CCG's and Trusts get away with it?

I never really thought that my GP lied to me all those years ago when he told me I was imagining it all, that my results were textbook perfect and that I had to finally accept that I was aging and that my thyroid was now behaving perfectly normally because of the fabulous Levo. But I know he did lie, whether he intended to do so or not.

What then can we do about this situation we are in?

It goes against my grain to forget it all again, to accept that I will never get better at this rate. If this has been going on since the early 2000's then how can we fight for change and reasoning when nothing is changing still???

My brain still hurts believe me and I am definately too old for this.

Ive posted many times on this forum what the guidance actually says and how I think it can used to obtain T3 if you clinically need it.

T3 tests ARE available in the NHS. You have to be persistent when explaining to doctor why they are necessary. Its tiresome to have to do it. I nearly gave up but I'm glad I persevered.

T3 IS available on the NHS. For some weird reason, some GPs and Endos lie about its availability. But the guidance is clear. Those who need it should get it. Once again its about being persistent and knowing what the guidance says.

And, as you have done complaining when GP

I have my T3 tested on every test. so far I don't need T3.

check my previous posts for more information

shaws
shawsAdministrator in reply to holyshedballs

At one time, T3 was withdrawn. GPs used to prescribe but, I understand, only endocrinologist can at present.

healthunlocked.com/search/p...

shaws
shawsAdministrator in reply to holyshedballs

This is from TUK

"In 2017 NHS England was asked by Clinical Commissioning Groups to undertake a consultation for their guidance on “Items which should not routinely be prescribed in primary care.”

Liothyronine (T3) was listed due to it being an item under the category, “Items which are clinically effective but where more cost-effective products are available, including products that have been subject to excessive price inflation.”

Thyroid UK was a stakeholder of this consultation and attended meetings and participated in the consultation.

However, previous to the consultation, CCGs across the UK had already decided that T3 should not be prescribed and informed all surgeries and hospitals in their area to stop prescribing and withdraw T3 from patients who are already on it (which we consider unethical).

thyroiduk.org/who-we-are/wh...

holyshedballs
holyshedballs in reply to shaws

The web page goes on to say:

CCGs do not have the legal right to order clinicians to stop prescribing or withdraw T3 from patients. The final say on whether a doctor should prescribe lies with the doctor himself. However, many doctors are worried that they could get into trouble for prescribing T3 and are therefore doing as they are told by the CCGs.

There is case law that I've quoted many times to confirm that blanket bans are unlawful.

The unlawful funding decisions were made by individual CCGs using the appalling PresQipp recommendations against BTA and NHS advice. Even during that period some lucky patients were still receiving their T3. It cannot be said that "they" or the NHS withdrew T3.

Its probably best to leave that in the past as the current guidance says that those patients who have a clinical need for T3 should still receive it.

I think our job now is to inform members that the guidance says that patients who have a clinical need for T3 can have it and to help the members to persuade their GP or Endo that they have a clinical need for T3 and that they should have it.

I can certainly vouch for my team that we don't delay things to justify our hard work. Delays can cause confusion and further delays as investigating officers familiarise themselves with their cases.,I'm sure that the same is true for the CMA. In my experience regulators want to resolve cases as quickly as possible. They don't want cases hanging around their necks causing them additional stress and then impacting on the victims even more as the case drags on.

The Competition and Markets Authority is not a branch of Parliament or a committee of Parliament. It is a a non-ministerial government department in the same way that the Environment Agency is an enforcement agency of the Government but separate from Government.

I don't know who is working from home but if they are anything like my department some staff will be working at home and some will come into the office. some things cant be done at home. but the clue is in the title: WORKING from home. Reports etc. can mostly be written at home. My team are working from home compiling prosecution reports etc.. It can speed up the process of some work.

The Courts are in a mess due to severe under funding during the last 10 years. Some of my cases have been adjourned many times leaving victims wondering if justice will ever be carried out. Court time to obtain Warrants, usually a relatively quick task, is becoming harder to find as judges are pushing to clear cases as quickly as possible.

having said that, the CMA has to follow its legal procedures. They allow a company to respond to various actions at numerous points in the course of the case. see here for details gov.uk/government/publicati...

Advanz have tried to stall the investigation at all points. they submitted an application for judicial review which was thrown out by the judge. This was simply a delaying tactic. In my view an abuse of process but I cant take any action about that!! I'm sure the CMA staff are ding their best under the circumstances. I emailed the lead investigator last year and was given the impression that they fully intend to complete the case because of the public interest in doing so. He is fully aware of the knock on effects of the unfair increase in the price of liothyronine.

And so it seems that we are unlikely to get better still?

Please forgive me, but if the CMA are not 'government' how can it be non Government if it is set up by the government? I have had dealings with the Envoronment Agency before. But to me, in my mind they are government if they are a government department. Not elected, but still are trying to uphold government laws, rules etc?

I can only think of the word Quangoes at the moment but I don't suppose that I am right about that either. I do however remember the 'Quango' furore of many years ago. I always tried to avoid getting interested in anything too high brow, but that word sticks in my mind for some reason! LoL

What can I do? I have been pushed to the brink of what I can accept at the moment.

I feel as though I have been hamstrung again. 20 years ago I decided to retreat away from thinking of trying to argue with my GP because I was told so many times that it was me who was wrong, nothing and nobody else. How can we as hypothyroid patients try to get more justice and protest about what is happening to us? 2 decades is a very long time to have been on the wrong medication.

So I retreated before and really did forget about it except for taking my levo and going for blood tests. If I gained weight I blamed myself, if I lost weight I wondered what I was doing this time that I had never done before.

If I had asked for a blood test because I felt good, and was losing weight easily I'd have been sectioned!!

But because I didn't go see my GP to ask why I was losing weight, I am still blaming myself for not going to see my GP! LoL

Hypothyroid always gets me back eventually and it did all creep back again, despite no change in either medication or diet. It is trying to creep up again now and I am struggling to contain it, but that is the nature of the beast unfortunately. Let's hope T3 will work for me on this trial, it is early days.

shaws
shawsAdministrator in reply to BrynGlas

I hope T3 works for you. When it does it comes as a relief.

shaws
shawsAdministrator

Dr John Lowe was an Adviser to Thyroiduk.org.uk before his accidental death.

He was always supportive of his patients. He also only took one blood test for the initial diagnosis and thereafter it was all about small increases (never of levo) of NDT or T3 alone for those who were 'resistant to thyroid hormones'

stopthethyroidmadness.com/h...

having been self medicating on NDT 6 years l was angry to hear this pharma company is ripping off the NHS and curious about this investigation so I decided to raise it with my MP who is a doctor aswell. whilst it didn’t change the fact that I can’t currently get t3 on nhs it raises the profile of our plight and specifically of a pharma company over charging the nhs for t3. it also raises awareness of the wider issue that we are being left unwell because of the over charging and refusal of some medics to accept we need T3.

i was told by a consultant endocrinologist off the record that they know many of us need t3 but that it’s too expensive ( which i totally sympathise with). however until the prices come down it’s hard to change their mind. i felt alerting my MP was a good way to get this travesty main stream and bring attention to our plight. I would urge anyone suffering to please consider doing the same.

when i spoke to an endocrinologist recently about my dad ( who was very unwell and mentally ill after years of being undiagnosed and still unwell on thyroxine alone), they mentioned possibly prescribing him t3 which is good progress. this came after only being on NDT with my help for 6 months and looking/feeling much better, so i feel things are slowly changing....

london81
london81 in reply to london81

this is the original press release:

The Competition and Markets Authority (CMA) has been investigating how much the pharmaceutical company was charging for liothyronine tablets. It found that last year, the NHS spent more than £34 million on the drug, an increase from around £600,000 in 2006. The amount it paid per pack rose from around £4.46 before it was de-branded in 2007 to £258.19 by July 2017, an increase of almost 6,000%, while production costs remained broadly stable.

Liothyronine tablets are primarily used to treat hypothyroidism, a condition caused by a deficiency of thyroid hormone affecting at least 2 in every 100 people and which can lead to depression, tiredness and weight gain. Although liothyronine tablets are not the primary treatment for hypothyroidism, for many patients there is no suitable alternative and, until earlier this year, Concordia was the only supplier.

CMA Chief Executive, Andrea Coscelli, said:

Pharmaceutical companies which abuse their position and overcharge for drugs are forcing the NHS – and the UK taxpayer – to pay over the odds for important medical treatments.

We allege that Concordia used its market dominance in the supply of liothyronine tablets to do exactly that.

At this stage in the investigation, our findings are provisional and there has been no definitive decision that there has been a breach of competition law. We will carefully consider any representations from the companies before deciding whether the law has in fact been broken.

The CMA is addressing its Statement of Objections to Concordia, as well as to Cinven and HgCapital – private equity firms and previous owners of entities now forming part of Concordia. All now have an opportunity to respond to the provisional findings set out in the Statement of Objections.

This is one of a number of CMA cases in the pharmaceutical sector, including a recent fine against Pfizer and Flynn Pharma of nearly £90 million in relation to excessive and unfair prices for anti-epilepsy treatment, phenytoin sodium capsules, in respect of which the CMA’s decision is currently under appeal. The CMA also fined a number of pharmaceutical companies a total of £45 million in relation to anti-depressant medicine paroxetine; that decision is also under appeal. The CMA is pursuing another 7 investigations into several companies in relation to drug pricing and competition issues. These can all be viewed on the CMA’s case pages.

Notes to editors

The CMA is the UK’s primary competition and consumer authority. It is an independent non-ministerial government department with responsibility for carrying out investigations into mergers, markets and the regulated industries and enforcing competition and consumer protection laws.

The CMA is addressing the Statement of Objections to Mercury Pharmaceuticals Limited, Concordia International Rx (UK) Limited, Mercury Pharma Group Limited and Concordia International Corporation, as well as to HgCapital LLP and to Cinven (Luxco 1) S.A., Cinven Capital Management (V) General Partner Limited and Cinven Partners LLP.

A Statement of Objections gives parties notice of a proposed infringement decision under the competition law prohibitions in the Competition Act 1998 and the EU law equivalents. It is a provisional decision only and does not necessarily lead to an infringement decision. Parties have the opportunity to make written and oral representations on the matters set out in the Statement of Objections. Any such representations will be considered by the CMA before any final decision is made. The final decision will be taken by a case decision group, which is separate from the case investigation team and was not involved in the decision to issue the Statement of Objections.

The Statement of Objections will not be published. However, any person who wishes to comment on the CMA’s provisional findings, and who is in a position materially to assist the CMA in testing its factual, legal or economic arguments, may request a non-confidential version of the Statement of Objections by contacting the CMA.

The CMA may impose a financial penalty (ie a fine) on any business found to have infringed each of these provisions of up to 10% of its annual worldwide group turnover. In calculating financial penalties, the CMA takes into account a number of factors including the seriousness of the infringement, turnover in the relevant market and any mitigating or aggravating factors.

Media queries should be directed to press@cma.gsi.gov.uk, on 020 3738 6337

london81
london81 in reply to london81

this is the page to get updates: gov.uk/cma-cases/pharmaceut...

BrynGlas
BrynGlas in reply to london81

Just looking at the Mail newspaper today and on p 28 is an article headlined "NHS Chief: Drug Firms are trying to rip off taxpayers" should be available online now I would think.

Sir Simon Stevens claimed that one company was attempting to raise the cost of a medicine for mental health disorders by 2,600 per cent. Talking of Essential Pharma.

And says that they raised costs of lithium carbonate from £3 to £87 in 2016.

They (EPharma) own the rights to two other brands of lithium carbonate and the cost to the NHS for the drug are now likely to rise from £2 million to £17 million

He is asking for it to be made illegal for " bad apple" companies to hike their prices arbitrarily.

Talking of making this illegal perhaps in the upcoming NHS Bill.

No mention of Thyroid medication. Don't know whether that is good or bad!

They published an article this week about lithium being mined in Cornwall this week too. Hope they stop EPharma from buying ours!!!! LoL The Bxxxxxx's

A Swiss company they are too! Makes sense I suppose at least they won't have to pay big tax bills in Switzerland.

shaws
shawsAdministrator in reply to london81

Thanks for all that up-to-date information. Dr Skinner and Dr Peatfield didn't need blood tests to confirm that the patient was hyper/hypo and if hypo prescribed NDT. Dr Lowe only took one blood test for the initial diagnosis and once diagnosed the concentration was upon the patient who was given small increases of NDT or T3(if thyroid hormone resistant) until symptoms resolved.

BrynGlas
BrynGlas in reply to london81

London81 & shows.

You know I am in this row with the GP/Health Board re hypothyroid treatment?

On Tues 15/09/20 I had a blood test done a long list of things that requested were taken..

On 16/09/20 Wednesday, he asked a receptionist to ring me and tell me to reduce Levo to 125mcg and I refused because I thought it was up to my GP to discuss this with me, rather than telling a member if admin staff to tell me how to manage my levo. She had not been told what my levels were or anything like that, but you wouldn't expect an admin to know anything of that side of things. I heard nothing then until Fri 18/09/20 when he told me that my Sex Hormone Binding Globulin was sky high. He told me (he forced me to ask what the significance of that was and how I tackled these high levels. He told me it suggested low testosterone and he set up a test appointment for Tuesday 22nd (???)

While he was on the phone I asked about my thyroid results. He said I was over medicated on levo and told me to reduce it to 125mcg. It was :-

TSH 0.24 R .35 - 5.5 FT4 17.9 R 7.0 - 17.0 FT3 4.6 R 3.5 - 6.5

I told him that T4 had been over the top of same range since 2019 and he had not asked me to reduce it before, so why now. He didn't reply.

I told him that I didn't want to change anything until I had a chance to get going with my T3 trial which I started the same day. He seemed to agree with me on that decision.

But my repeat went in this last week and my chemist rang me yesterday to say that my medication was ready, but that GP had reduced Levo to 125mcg , from 150mcg. He said that I could not take the 125mcg dose on my preferred brand of Accord because they don't make a 25 mcg levo tablet. So guess what, I have had to be given Teva for the 25mcg dose.

I have told the GP that I absolutely will not take Teva under any circumstances I am now on 2/3 rds of my long term dose and if I become ill again because he has effectually reduced my medication too drastically then I will hold him responsible if I become ill. All I wanted was to trial T3 and see if it made any different and I had explained this to him in writing (copy kept) as well as over the phone, then after seeming to agree that I could take some time to see how I was going on with the T3 he totally changed his mind and did exactly the opposite.

I have to say that I don't think GP was aware that I would not accept any other brand than Accord. I did request only Accord brand on my repeat request forms quite a few times, was not given any reason to think they had done anything about it, so assume it was ignored. But after talking to the chemist about this, he told me he would do his best to give me only Accord and has never failed me since then.

Can I ask you two how you would tackle this? I am not willing to let it go, that is all I know at the moment.

london81
london81 in reply to BrynGlas

please post this as a new question on forum as it’s quite complicated and lengthy. same thing happened to my dad with regards to GP getting reception to tell my dad over phone to reduce his levothyroxine as TSH suppressed ( totally inappropriate as my dad is on ndt so suppressed tsh not a problem, and because my dad is so complicated in regards to his thyroid and mental illness he shouldn’t be given any changes via a GP or receptionist). in my dads case i’m writing to his GP,endo, psych and social worker every time i have a complaint or a relevant change. his care is not to my satisfaction but as i’m helping with the thyroid it’s just about okay. in my opinion the nhs is being under funded and destroyed and everyone involved is often doing their best but it’s often not satisfactory

in your particular situation i’m not on T3 so can’t claim to be expert. what springs to mind reading it through are the following:

make appointment with GP and ask to be given 150 levo again, explaining why in a bullet point fashion this is appropriate/needed

Take with you a print out of some science that says TSH is suppressed on T3 and why therefore monitoring of TSH when on thyroid therapy is inappropriate ( if you post a new question or search TSH T3 in the forum i think there is quite a bit of useful info) - in my case i had a letter from consultant endocrinologist confirming tsh suppresses on ndt/t3 so i use that if needed

are you seeing an endo? if not maybe try and see one through GP or privately to push them to approve/monitor your self treatment with t3

hopefully something of use here

BrynGlas
BrynGlas in reply to london81

Goodness you have a struggle on then. I hope you can keep him on an even keel, with his mental health compromised too it must be very hard, I wish you luck with it.

Yes, I will start a new thread, I feel that I am forever bleating on with complaints, that is another reason why I made myself turn my back on my worries so long ago. In a way it was easier on my mental health!! LoL

I am not sleeping again now, this is really challenging me, forever thinking of it.

I asked for an endo many times after diagnosis and Levo not working for me, but it was over 20 years ago and I was then advised to accept that I was ageing and that my test results were text book perfect so an Endo would never agree to see me. Was also told that Levo was the only medication I could be given.

So I had no choice finally but to stop asking why I still felt awful and my weight was still increasing and basal temperature and pulse on waking were stupidly low/slow and still are. I gave up finally and tried to put it out of my mind, did a good job too, I stopped bothering a GP about hypothyroid after that and just existed taking whatever I was told and turning up for blood tests when they told me to..

Until this time last year when I started to gain weight again and found Thyroid UK and this site. I have tried to teach myself how the tests/levels etc work and the different options, both in brand of Levo but also T3 alone, or with T4 combo, which I wasn't aware of as well as NDT .

But I have asked to be referred to an Endo in Glan Clwyd, which is not too far away and he is on the ThUk list. Whether GP will agree I have no idea. In fact I have asked twice but they appear to be determined not to answer my emails.

I don't think my GP would agree to see me. He was only offering phone consultations until this last week, when I tried to ask for face to face with him I was told there was no such thing anymore.

I have complained to the Health Board about practices such as examining patients on the road outside the surgery in a parked car, GP keeping well distant. But when I was back there last Tuesday there were 2 GP's in the surgery, apparently seeing patients face to face, but didn't ask any questions, I thought I would take everything in and say nothing.

I told him that the FT4 which has been at or over top range for at least the last 4 tests that I can prove (and which he agreed with me on) was raised only because TSH was calling for more T4 to convert into the T3 . And because I think I must not be converting T4 to T3 adequately, I was trying to supplement it with Tiromel.

So if I could not convert T4, it would continually be increasing in my blood stream I presumed.

But I also said I would expect that if I have more T3 in my blood stream because I am supplementing, I would expect both TSH as well as FT4 to reduce, surely, because TSH won't be always calling for more FT4 to convert?

I have asked today that I have my original dose of levo reinstated and I told him why he needed to do that. I will follow that up with a Special Delivery letter so I can prove that they have got it and keep copies.

This GP is fairly new to the village possibly 5 - 6 years?? He has however taken over another 2 practices as the GP's retired. So he has the patients from 3 practices rolled into one, he is struggling to cope - in my opinion. He is trying to use 2 ANP's who can see patients face to face, which the GP won't, or didn't. He told me that was because if anyone on the staff got covid they would be forced to close the surgery for 14 days. My argument is that an ANP or a nurse taking blood could just as easily get Covid, but all see patients face to face. He seems to think that they couldn't get it, but he might! Mindboggling.

Sorry, going on and on. Thanks for your help

london81
london81 in reply to BrynGlas

it sounds like you are getting on top of it, be proud! I know exactly what you mean about constantly struggling against the system and trying to explain to doctors what we need, we are very often expert in our own bodies and conditions but treated like a number ( not all doctors obviously i’ve had some good care recently i’m glad to say). my dad changed GP this week due to moving and the whole sorry story started again - a nurse rang him from endo clinic who hasn’t read his file, assumed I ordered his dexa scan despite it being ordered by endo; said he hadn’t been for blood tests when he had then when i pointed this out decided to tell me she knows nothing about free T3. I wondered then why she was asked to call my 62 year old severely mentally ill, sometimes suicidal, NDT taking father as if he was a generic patient 🙄🙄 the system is breaking and i believe within 20 years it will be like america mostly private care 🤢👎

BrynGlas
BrynGlas in reply to london81

OMG it doesn't get any better does it? It sometimes makes me wonder how on earth we aren't all having breakdowns, because everything is such hard work.

I wouldn't be surprised if that happened either, I mean, we have always had waiting lists a mile long, slow going to get anything done but with Covid and just the fact that the ranges are raiseded so that it is really difficult for people to get diagnosed in the first place, well I am just disgusted. I am sure there are similar things going on for other illnesses, it won't just be thyroid patients who are going through it.

The NHS has just been neglected, but so is the police service, fire service I am not sure of, but I would be prepared to bet that they are underfunded. And the armed services! Don't get me talking about them. My son was in Irac in the first wave, under Blair. They were short of kit, the men were buying their own kit and boots, when it was in the newspapers Blair said they only bought their own kit because it was some sort of 'fashion' or other! The Americans were so often asked did they have this, that or the other that they called our lads 'the borrowers!'

So it is in every walk of life, it seems there is always something else around the corner to worry about.

BrynGlas
BrynGlas in reply to london81

It sounds as though it is a regular thing to tell admin staff to give out blood results, it has happened to me twice this year one in NHS England and this one in NHS Wales, plus your own experience. I suppose it is saving a GP's time, but the normal result I got in Stoke was not normal when I had the print out in front of me.

I don't know how it could be stopped, but I am sure that it isn't good practice, I wonder if it could be described as anything worse than that?

Limbolass
Limbolass in reply to BrynGlas

I have not even had a hormone test, not a single doctor in all my years of being hypo has asked me to have a hormone test & yet here that comes up often. Think I will ask for one next time I go in (which may be a while due to the pandemic.)

BrynGlas
BrynGlas in reply to Limbolass

How have they diagnosed you then?? That sounds very strange to me, I don't think that I have heard anyone say that they have been diagnosed without blood tests???

Might be a good idea to Post your own thread asking for help, because never having had a blood test just seems very wrong to me.

What I have done in the last 2 test requests was to write a letter and add a list of the tests I wanted doing and sent it into the surgery, asking for appointment for blood test, include TSH, FT4, FT3 and the vitamins etc that you need, the Admin ladies will tell you what you need, they are worth their weight in gold!

But ask for everything possible needed. Keep a copy of your letter and list, if it is posted send it Special Delivery, unless you can hand it in personally yourself. I got everything I asked for on the NHS but I would have had to pay for them if they had refused.

I kept my copy because I really didn't think I would get them all done, not twice anyway. Best to try it and if you need to pay for some at least you have tried and got some done on NHS. I was also prepared to complain if they refused me, but I didn't need to in the end, though I have complained about everything else!!!

BrynGlas
BrynGlas in reply to london81

Whoever signed up the government to Pharma wants shooting, you would think that they would have known better than land the government in this state of play, never mind for selling hypothyroid patients down the river.

So can none of us get hold of NDT now? I haven't tried it but have always thought that I would like to try it, because synthetic anything to me is worse than natural in my mind. But I have also seen the States with NDT being recalled a couple of times and that scares me. There but for the grace of God go I!

I know I have found someone to supply me with T3 at least for right now, but how long will that continue? How long is a piece of string??

london81
london81 in reply to BrynGlas

my experience is I can only obtain ndt from one source now at a price of £345 for 50 days ( on my current regime of 5 grains which is higher than most.) this is the approx price before charges as it’s paid in euros, and then customs fee plus postage. when i first started buying it i paid £65 sterling for a month:

the thai supply has run dry from what I understand

I have some NDT and T3 here but won’t last long :(

BrynGlas
BrynGlas in reply to london81

Wow, no way I could pay that. Hope things can change soon because I am appalled that they are taking such advantage of people who are ill. They are doing the same with other medications too I read in the full document which I read.

I hope things change for you, at least I have never felt well for many years, I can only imagine how I would feel if I had felt well on any particular medication but was priced out of it. Suicidal I would imagine.

I can only think that we should be manufacturing our own pharmaceuticals instead of relying on the EU. There are going to be lots of people who need jobs now. And with brexit (which I agree with) I would not be surprised if we have pharmaceuticals held over our head, but they already are doing that of course.

I cannot believe that I was never offered the chance of trying T3 when it was made available. I got left behind because I just tried to put it out of my mind, to stop the constant searching for a solution to my lack thyroid hormones.

We are being treated as cash cows aren't we??

MikeM46
MikeM46 in reply to BrynGlas

Please do not confuse genuine Brexit-related issues with the still outrageous cost to the NHS of T3 medication. And for that matter disregard the long running CMA court case.

The T3 price-ramping that took place was agreed by our governmental procurement experts at every stage. In the meantime the cost of equally high-quality T3 in Europe has remained relatively nominal all along. When UK T3 price ramping blew up in the media back in 2016, the then Secretary of State, one Jeremy Hunt, successfully steered new legislation through Parliament which produced a medications cost control act later in 2017 specifically to deal with this sort of

Price-ramping. But the government has chosen to do precisely nothing with these new legal Powers thus dragging tens of thousands through the nightmares of de-prescription of T3 and another vast number failed by T4 medication remaining unwell with dreadful quality of life in so many parts

of the country where T3 prescription remains effectively banned despite it’s availability according to NHSE Guidance.

Anybody know if T3 is actually manufactured in the U.K. ? The MHRA are decidedly set against divulging that info!

BrynGlas
BrynGlas in reply to MikeM46

I understand that MikeM46 I suppose I was assuming that a lot of our medications are manufacturered and supplied by the EU. And I have heard of people buying their meds from within Europe, so I am guilty of assuming that they were manufactured there too.

I am trying to get myself better educated about this side of things, because it is something that I am having to think about. I would seriously like us to manufacturer our own medications within the UK. But how feasible that would be I have no idea.

I presume that T3 isn't manufactured here, or else why are we in this mess? We are being held to ransome by an apparently Swiss owned company which I discovered yesterday and which surprised me.

MikeM46
MikeM46 in reply to BrynGlas

Lol ... you may well find that Brexit will have an effect on medication supply other than the price of T3 on the NHS. I know of one patient who had her European (EU member) pharmacy choose to no longer supply customers prescriptions from the U.K. even though the then arrangements with the EU specifically allowed continuity of supply. It was a business decision made by that pharmacy as a result of Brexit.

Limbolass
Limbolass in reply to MikeM46

Oh god I hope they don't all do that. I am now waiting to hear back from my endo & GP on if they can give me a T3 prescription so I can use it with a german pharmacy...

BrynGlas
BrynGlas in reply to MikeM46

I don't have a prescription, flying by the seat of my pants! LoL

shaws
shawsAdministrator in reply to london81

That's a truly scandalous price.

Limbolass
Limbolass in reply to london81

That price is outrageous. I cannot afford that.

BrynGlas
BrynGlas in reply to london81

I have decided that after more than 2 decades being on levo only, never felt well on it but had no other option I am turning into someone who is complaining fit to bust practically every day! I also copy my Health Board, Assemble member and MP into every complaint I mKe. I am sick of being told that I am perfectly normal when I am far from it. They have never even filed my test results on my records, I have found only 6 out of 21/22 years of living with this mess.

shaws
shawsAdministrator in reply to london81

I doubt that many endocrinologists are aware that some people are NOT following a fashion, i.e. requesting T3 or T3 added to T4 or NDT.

Millions are o.k. on levothyroxine but they certainly wont be on the internet looking for advice as they are no longer symptomatic and feel their health is normal.

NDT, as you probably know was first given in1892, but suddenly the BTA withdrew this very popular replacement without notice and due to False Statements that was made by the 'authorities' to do so. As they also withdrew T3 too.

Was any thought given about the patients who were well upon either and - what their reactions were when told it was withdrawn ? Definitely not. The patients were not consulted and, as we know, the shock and panic for many people that arose was completely ignored.

I think the response was 'just give them levo'. It should work fine!

NDT is a grand-fathered product due to it being given from 1892 - no blood tests - and lives were saved.

Only knowledge and training of the doctors with patients being given a trial onwards up until Big Pharma wanted some 'action' on increasing their profits so levothyroxine was then introduced. You don't need a functional brain to realise that from 1892 up until the persuasive arguments, gradually have reduced options for us who're hypo. First NDT - then T3. People forced to source from 'somewhere' in the world.

I thought Great Britain had an NHS for those who don't have private health insurance.

If Hilary Clinton and others have a normal, healthy lifestyle with their NDTs or T3, they will not commit suicide as a woman (we know of) was driven to do so. Who cares????

The millions who do o.k. on levo are not looking on the internet for advice as their lives are fulfilled through levo.

One of TUK's Advisers wrote the following to the BTA and as they didn't respond, despite two reminders and would suggest to me that there's no 'care or concern' about patients who recovered on NDT just as some cannot recover on levothyroxine but do so on liothyronine (T3).

drlowe.com/thyroidscience/C...

Even if GPs want to prescribe - they're forbidden and some, unfortunately, seem poorly trained.

It's time the 'professionals' listen and learn from those who can only feel their health is 'back to normal' when taking the correct thyroid hormone that restores energy, removes symptoms and the feeling of good health is returned.

We have members on this forum who are so skilled in their knowledge about the thyroid gland (I am not one of them) and people who aren't improving are thankful to have sensible, encouraging responses. It gives the sufferers hope that they can feel well again - enjoy life with their families (who might be fed-up with complaints) - after all the patient has been diagnosed and the doctor has prescribed

BrynGlas
BrynGlas in reply to shaws

Shaw, I have been suicidal because I really didn't want to live any longer with the sheer bloody hell of trying to live as I am now. In June 2018 I was in intensive care because I overdosed.

I had been on anti depressants for 4 or 5 years and addicted to those which I didn't realise until I tried to reduce them in early 2018. They said it was my attempt to reduce those that pushed me over the top in May.

My husband was diagnosed with heart failure, I was caring for him, my daughter had been suffering from the HPV thing for years finally diagnosed stage 4 about 6 years ago and being treated for vulval cancer since. My grandson was diagnosed ADHD at about the same time. I am also epileptic, so while I was controlled at that time and still am, it is always at the back of my mind and I am for ever worried that that could reappear, which is a possibility which I live with every day.

I was overwhemed. Pre 2018 I was given anti depressants because I was self harming , I could not sleep for toffee, but sleeping tablets were worse and I didn't want those.

I was drinking too much because at least I could pass out in oblivion at times to stop my brain working over time. They told me in the hospital that it was no wonder I had flipped.

But I believe it was my chronic hypothyroid since 90's being on Levo, being told it was all in my mind, stop imagining things when I had text book test results which anyone could see, though I was not allowed to see them.

My family think to this day that I am 'nuts' because I am still continually searching for a way to lose weight, trying this that and the other diet. Get over hypothyroid. They are appalled that I am willing to go against advice by, as they see it, pushing ahead into the unknown & willing to source T3 myself and treat myself with it.

I really think that they have no idea how it feels to be in inside a body which I still cannot recognise as being mine, only someone who has been in our position can understand how low thyroid feels and the struggle you have to live everyday and get by in life only, because I am not living. I am only existing and it has been going on for 2 decades with no respite.

And all of this cost increase etc from what I have read here, this started around the millennium and we seem to have got no further with it? It boggles my mind to be honest. I can't see this ever changing. People are finding that they may never be diagnosed because test ranges are being increased just so that they cannot achieve diagnosis if what I am hearing of that is true. And yet lowthyroid is something that no person in their right mind could possibly be interested in being diagnosed with. Even the ones who do ok on Levo!

Sorry, I have gone OTT because I find it outside the realms of my brain to understand all of this. When I say my brain hurts I really mean it.

shaws
shawsAdministrator in reply to BrynGlas

You aren't going OTT. You, like many who've been left to 'get on with it' without adequate thyroid hormone replacements, are right to be angry especially when we find out that there is(could be) options that can restore health.

It's the fact too that many were prescribed NDT or T3/T4, or T3 alone as options then were available. Now no NDT or T3.

BrynGlas
BrynGlas in reply to shaws

Thanks shaws, hopefully we can all get the medication that we need very soon.

I think I have hope now, whilst understanding that it is a rocky road that I have to travel, well worn by others who have been this way before me. I am not giving up that is for sure, I see a glimmer of light that might one day illuminate my tunnel!

Good grief, where is all of this coming from today?

It is nice to hear that we are not alone, though understanding that what is happening to us is not acceptable in any way. And HU has helped me stay sane for the last year approximately so I am very happy about that.

shaws
shawsAdministrator in reply to BrynGlas

It comes as a relief to find we're not alone in our distress/pain/ etc. Few doctors are taught anything these days.

Mine for instance phoned to tell me after a blood test "your TSH is too low - your FT4 is too low and your FT3 too high".

My reply:

"Yes doctor TSH is low because I take T3 alone. T4 is low because I take none."

GP "but T3 converts to T4" 'No doctor - it is T4 that converts to T3'.

This is a mature doctor and it must have seemed quite easy when they were training but not given sufficient training about the function of a thyroid gland especially a dysfunctional thyroid gland.

london81
london81 in reply to BrynGlas

I just wanted to say i identify- i have had a very similar struggle to you including the alcohol. i’m 4.5 years sober and 5-6 years on NDT which helped a lot ( now worrying about sources like everyone else). My dad has three breakdowns and counting due to psychosis triggered by years of hashimotos undiagnosed and untreated ( partly his own refusal to look after his health). my mum has a brain bleed and mini stroke in january. the list goes on:

i’m grateful for this forum and the support & knowledge we can give each other. don’t give up there is always hope. xx

BrynGlas
BrynGlas in reply to london81

I am sorry to hear of your family's fight with the same problems, it is all very sad, and shouldn't be happening in the 21st century. How you cope with trying to work out this mess in your professional life, I can't imagine, when you are in the same boat as so many of us, but I thank God that you are trying to sort it out.

I am also not under the control of alcohol these days, though I cannot be described as alcohol free. Occasionally I have a drink, just not because I need oblivion anymore, thank God and I am perfectly happy with that. I prefer to be the driver if I get to go out anywhere, in a group, which is very rare, but acceptable. We are all under the constraints of Covid anyway, so it is not important is it?

Now I have got to try to get this message through to my family, because my daughter and grand daughter won't speak to me at all, because they believe me to be a selfish old woman who is never satisfied with her life. And in a way they are correct.

I am very happy that I discovered this thread, because I have more of an idea of what is going on and why we are all in this mess. I still find it unbelievable that we are here though.

I have made everyone who I think needs to be aware, exactly what I am complaining of and why and I have made it crystal clear that I blame the powers that be for putting me in this position. Not the illness, but the treatment of the illness.

At the moment it is all I can do and I have to learn more as well, because my doctor is not supportive at all.

But I would love to make more of a statement to bring these matters more to the fore, but with the Covid situation, I cannot think it reasonable or possible to think of anything like that.

In fact I have seen 5 different GP's in Wales over the years and none of them was willing to take me seriously, the current one certainly isn't. I suppose having learned a lot more about it for myself, I can argue with him more about Levo and my test results, but he has told me that he wants me off his list once this complaint I have made is done with.

I left the others to just get on with thinking that I can't accept aging or that my tests are perfectly normal. Forgetting about it all those years ago though has not improved my health one bit, though I could not think of what else I could do at that time, because I was banging my head on brick walls, refused an Endo or any alternative medication. So being stuck between a rock and a hard place, I withdrew and gave up. Not the best thing I could have done, I realise that. But I suppose I just couldn't take the pressure in the end.

But I thank you all for allowing me let off steam and educating me about such things.

shaws
shawsAdministrator in reply to BrynGlas

On this forum, as the majority of members have gone through many trials in order to get a diagnosis it may come as a surprise to new hypo members that there are so many on this forum who've been helped, or have resolved their hypo symptoms.

The pity is that nowadays that most doctors are very poorly trained in dysfunctional thyroid glands and the necessity of having optimum thyroid hormones for our body to function.

Levothyroxine is T4 - an inactive hormone that has to convert to T3.

T3 (liothyronine) is the Active thyroid hormones and we have millions of T3 receptor cells and they need T3 to enable our body to function normally and the brain and heart have the most T3 receptor cells.

shaws
shawsAdministrator in reply to london81

You have my sympathy re your family's struggles and it would have been very difficult when parents are unwell too.

shaws
shawsAdministrator in reply to london81

I hope you will still be able to source NDT.

shaws
shawsAdministrator in reply to london81

I am sorry that both your parents have developed serious illnesses and I know it will be a big worry for you.

I do hope that both parents get appropriate help/assistance from the medical professionals.

london81
london81 in reply to shaws

thank you- i’m glad to report my dad is doing well on ndt (relatively speaking!) and mum is doing well too!

this forum helps a lot. thank you for everything

Happening/ Parliamentary Inquiry ?..... surely this is an oxymoron. Having gained my parliamentary education from 'Yes Minister' I thought the whole point of a Parliamentary Inquiry was to kick an awkward subject into the long grass for as many years as needed to allow the complainants to die of old age / frustration.

BrynGlas
BrynGlas in reply to tattybogle

I can't see this Happening ending at all tattybogle. To think that these companies have been fined millions and have still managed to be able to paralyse treatment in the UK for hypothyroid patients is something that I could never have thought possible in the enlightened UK in the 21st century.

I'm doing my best to read all the replies thanks all, blimey how complex does it need to be? Even reading through this thread is a struggle for me now as I'm unwell & struggling to concentrate.

You may also like...