Self treatment with NDT and B12: Having recently... - Thyroid UK

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Self treatment with NDT and B12

Polaris
Polaris

Having recently been taken to hospital for assessment with nausea/sickness (suspected Addison's Disease possibly brought on just after agonising muscle injury), I found myself with mixed feelings/bemused to be told that the sickness/nausea was the result of the drugs (Homeopathic Arnica and Rhus Tox!!! 😳) and given three consecutive days of re-hydration.

On reflection, what I find really terrifying is that, having had to admit to self medication (NDT for long standing underactive thyroid as well as over three years self injection for B12/PA), the doctor's immediate response was to tell me that the CPC?🤔 are working to prevent access to these medications from pharmacists in Europe and elsewhere 🤦‍♀️😱 As 40% of those with thyroid disease also have B12 deficiency and vice versa, the thought that there is an organisation working to prevent access to legitimate pharmacists supplying NDT or injectable B12 (only available abroad) is, frankly, unthinkable.............

Does anyone on the forum know what the CPC stands for?

............................................................

On recovery, in a friendly conversation later, I managed to defend self treatment, assuring the doctor I'd not taken any meds without first being fully informed by scientific advice/knowledge available on Thyroid UK, as well as own in depth study of B12d/PA. I was also by then able to explain that, because undertreatment of both these conditions had left my younger sister psychotic with vascular dementia, (with evidence now becoming clearer that others in family do not easily absorb B12) I'd most probably avoided the same fate by self treating..........

Apart from this, I'll be eternally grateful for the kindness and care I received that went well beyond the call of duty.....

83 Replies
oldestnewest

Is it possible the Dr said CCG ? Clinical Commissioning Group. It seems they are the ones holding the purse strings .. x

Polaris
Polaris
in reply to Marz

Thanks Marz - yes, it's possible - even though I was determined to remember, I could have misheard in fuzzy state. I'll look up CCG x

JaneChapple
JaneChapple
in reply to Polaris

Hi Polaris

Would love to know if it was CCG. They did used to be called RCP?

Its rather worrying to say the least. Its bad enough trying to get T3/NDT as it is. I know someone who was in hospital for a month with B12 deficiency and is srill recovering several months on. She nearly died. NHS dont give enough or the right type of B12 anyway. A doctor in the UK has been banned for giving more B12 injections than the powers that be allow! You can find the story on the net. Hevhas even had to highlight in yellow on his site that he cant and doesnt sell B12 injections. I fear Big Brother is watching our every move now!

Take care and keep safe

JaneCxx

Polaris
Polaris
in reply to JaneChapple

Thank you Jane. Find use of these acronyms so confusing - grumpy old granny in me coming out - not sure, I have the energy to keep on researching any more ....

I think you're referring to Dr C, retired GP, who wrote the book, 'Vitamin B12 Deficiency in Clinical Practice', Another conscientious and hugely experienced doctor hounded by the MBA for successfully treating his patients with B12 and giving them back their lives!

It was his protocol and research that initially persuaded my sister's surgery to begin B12 injections....

Thank you for response and keep safe too. x

Marymary7
Marymary7
in reply to Polaris

Ah the fabulous Dr. C. He was so lovely to my brother. Only by phone but it made my brother believe me and help him to start b12 injections for his M.S. And P.A. Sadly my brothers mind has gone now. I can't help him now he's shut me out completely, gone insane and nasty, not his fault I know but an impossible situation .

Polaris
Polaris
in reply to Marymary7

I'm so sorry Mary ..........

It's really devastating to see the changes in personality and hard to come to terms with losing the person you knew and loved that way x

Marymary7
Marymary7
in reply to Polaris

Thanks for the kind words. It is incredibly sad, I did everything in my power to help him. I would still like to but the latest thing is he's blocked me on his mobile, I can't even phone him now. He could perish in his little flat and who would know. He's in a wheelchair now, very vulnerable and he's literally cut off the red pull cords to alert the council so he can't even get help. Very nasty to me when I go there, he's not like my brother at all. 😟

Polaris
Polaris
in reply to Marymary7

That must be so worrying Mary.

It's hard to believe how intransigent the medical profession can be when you're desperately trying to just get them to read the research and join the dots,......I know I completely lost it once with a smirking GP, who said sister was faking inability to walk and wanted to continue antipsychotics instead of bringing forward her B12 injection one day!

My sister, usually even tempered, kind and the sanest person you could ever come across, even with years of chronic fatigue, began to have serious memory loss, etc. then hallucinations, eventually becoming quite paranoid and taking against people.

It was so difficult to know what to do because she was also very independent. She's in an extremely good care home (no Covid) now and happy..........

I hope something changes for you both soon x

Marymary7
Marymary7
in reply to Polaris

Thanks. I'm glad your sister is being looked after. It's a relief for you. The doctor was particularly cruel to John, completely without any empathy. The only thing would be if he collapses, gets taken to hospital and tested? He is out of the system at present, won't even see a doctor. He saw off the council support lady by placing a formal complaint reporting her for an imaginary conversation he thought she had with me discussing his personal health ... she didn't. I had to write a statement to the council saying I only ever said hello to her in front of my brother and she was extremely helpful and professional with him. So bang goes that support too.

It's a worry on my mind all the time now and I miss him and our chats about our family and now deceased parents, my other brother also has M.S and I can't see him either. So sad for my brothers . x

Polaris
Polaris
in reply to Marymary7

So very sad - all these lives affected for want of open minds and simple, cheap injections........

Marymary7
Marymary7
in reply to Polaris

So true and knowledge of vitamin D deficiency in M.S too not just B12. And I have to self treat for Hashimotos myself as you do and as lots on here have to. X

Mamapea1
Mamapea1
in reply to Marymary7

Heartbreaking😥 I'm so sorry. A similar story to that of my friends young son...only in his mid twenties, but clearly showing signs of a severe B12 deficiency. Unfortunately, his mother works for the NHS and is surrounded by Drs telling her he's 'just' mad...vitamins have never been checked! They're fine with putting him in mental institutions and filling him with various concoctions of Pharma meds until he's a zombie though! He was fine before.

No one will listen to me, and when she tentatively mentioned it to his Drs [probably because she was sick of me saying it] they said it was impossible for B12 to have any effect on mental health like that😳 There's so many reasons for it to be B12 that I won't go into here, but why don't they understand the consequences of vitamin and mineral deficiencies and just test people?? Answer: there's no money in it. The whole system is flawed. Healthy people do not make good customers, yet the amount of money that has been spent on this poor soul must be astronomical, and he and his family continue to suffer and despair. If he stays out of institutions long enough, I intend to try and persuade him to do a medichecks, which I'll send off myself, although he's mostly beyond reason now, and everyone's convinced he's crazy. As you say, an impossible situation, and so sad.😕 x

Marymary7
Marymary7
in reply to Mamapea1

Thanks for reply. Yes it's so frustrating because we can't do anything. I hope your possible plan for a private test comes off. Such a waste of a young life.

Did you see that film with the doctor wearing a nappy at the start who was diagnosed with something rare but a pal noticed it was B12 def?

When my other brother was in hospital recently because he had a seazure which is common when they stop the Tysabri infusions (for M.S) but they didn't care about that known effect. I asked them about B12 levels but was told they were fine and they wouldn't treat unless they dropped to 30 ... I don't know the range they were using he was at 80. I can't do anything there as he's married and I don't speak to her as there was a huge problem with her and my ex husband....I was pleased to be able to visit him in hospital as I could see him as he's normally confined to home.

It is all about profit and it's only going to get worse in the future I fear.

I would be dead in a ditch if I didn't investigate my Hashi and treat myself.

Mamapea1
Mamapea1
in reply to Marymary7

I did see the film Mary, I've forgotten the Drs name but I think it was on the Sally Pacholok site. It should be on mainstream media! Everyone should be aware of the serious consequences of deficiencies, but it's all kept under wraps, just in case we all get too healthy. Yes, it's all going to get worse unless we all stand up against it...I too would be in the ditch with you.

I hope things improve with your family situation. When you mention anything about deficiencies or thyroid issues, you're treated like a crazy person. Whenever I brought such things up, I was told I was depressed and offered antidepressants... I could've wallpapered my whole house with those prescriptions!😠 x

Marymary7
Marymary7
in reply to Mamapea1

Its here if anyone is interested, you were right it is Sally Pacholok.


Mamapea1
Mamapea1
in reply to Marymary7

Thank you for posting Mary...yes that's the one. Hopefully many members will be interested in this very important subject, although it may warrant a new post of its own to get more views. Some of those issues being described/discussed were eerily familiar to me...thank goodness I found out when I did. So awful to think of how many elderly people may be suffering with neurological problems too, and remain undiagnosed, racking up huge bills for care😟 x

Marymary7
Marymary7
in reply to Mamapea1

Yes and it's happening all over the world. How crazy is that. I read when they checked residents in a carehome they were nearly all deficient of B12. Another study found that behaviour was greatly improved with fish oil supplements in a prison . Does anybody care, no. Need a health body/group who checks and implements studies of these things.

I once worked for a family whose young son had an anger management problem/autism? When I suggested he needed omega 3 they supplemented him and he was then just fine within a short period of taking cheap cod liver oil capsules ... they were high up medical people and they admitted I was right?!

Mamapea1
Mamapea1
in reply to Marymary7

A shameful situation...and their vitamin D levels must be dire, and as we now know this can also lead to B12 deficiency...it's a wonder any of them survive at all. I would love to work for an organisation that goes around care homes/schools, etc. and tests for deficiencies. It would be so rewarding...we should start one up!

I love your fish oil story...my mother always insisted I took a fish oil capsule every day, which I did until I left home...I should have continued with it!

My youngest daughter began to develop behavioural problems around age 4/5 and while that may seem 'normal' [there was a lot going on😕] it just wasn't 'her'...she had changed...I could pinpoint the time but I won't go into that. I had read an article about omega 3 and bought an oil product that had just come out at the time, and tried it. It tasted vile and much bribery was involved😂 but she took it and the transformation was amazing! The whole family was astounded. Her teachers all commented on the transformation, knowing nothing about the oil.

Things could be so different for so many if only medics would get on board with all this, but as you say, no one seems to care...it's all about the money😔 x

Marymary7
Marymary7
in reply to Mamapea1

Yes it is amazing. I bet countries that eat a lot of oily fish in their natural diet have less criminal/ antisocial behaviour than we do in UK.

Polaris
Polaris
in reply to Mamapea1

Mamapea1 Marymary7

so terrible and wasteful of precious lives as well as stressful/frustrating for those relatives/friends, who really know the patient and are desperate for a simpler, less toxic treatment that doesn't just cover up symptoms.........

Just remembered, I posted this on PA forum a year ago after hearing it on radio/TV?, if it's any help?

" An independent review has called for mental health patients to be given improved rights and greater control over their treatment, e.g. challenge the treatment given and nominate a person to advocate on their behalf (at the moment this automatically goes to their closest relative).

Rai Waddington, the mother of a 9 month old baby and a member of 'Hearing Voices Network', was interviewed about her experiences and ability to make choices about medication."

They do like to have their cake and eat it ,don't they. One minute they are adamant that homeopathic's are placebo's , the next minute they can cause sickness/ nausea requiring rehydration !

I really hope i haven't put loads of kids with bruises in hospital by giving them arnica :) sarcasm intended.

Like it's not hard enough getting yourself better without help anyway ,without the powers that be (whoever they be ) actively trying to stop you getting it when you've found your own remedy.... hormone, or homeopathic !

helvella
helvellaAdministrator
in reply to tattybogle

We do, though, have a problem in that homoeopaths and patients (and others) fail properly to distinguish between the ultra-dilute homoeopathic remedies and "anything else" that was supplied by a homoeopath, or a company which supplies homoeoptathic and other medicines.

tattybogle
tattybogle
in reply to helvella

True

x

Polaris
Polaris
in reply to helvella

Not sure what you mean exactly Helvella ?

helvella
helvellaAdministrator
in reply to Polaris

If you go and buy a homoeopathic remedy, one of the ultra-dilute ones, then it statistically will not contain any of the original substance.

But many homoeopaths will also supply products, such as vitamins or minerals, which are not ultra-dilute and do actually contain the claimed substance.

These other products could well have measurable and direct effects of their own.

For an example, a homoeopath might suggest you take Thyroidinum - a remedy with no measurable content of thyroid hormone. Or they might suggest one of the thyroid glandulars which might (or might not) have some thyroid hormone content but would have measurable thyroid gland content.

One depends on homoeopathic principles. The other depends on a pretty conventional approach not altogether dissimilar to standard desiccated thyroid.

Polaris
Polaris
in reply to helvella

Thank you for clarification, Helvella.

Not able to comment on homeopathic thyroid treatment as not something I'd consider but I have had limited study and use over the years of many other homeopathic remedies with only good effects and no problems.

helvella
helvellaAdministrator
in reply to Polaris

For a doctor who very likely dismisses homoeopathy to blame a homoeopathic remedy seems odd. They really have to fill in the blanks as to how such a rememdy could cause a physical issue.

But for the same doctor to blame a thyroid glandular for something at least seems to blame a feasible causative agent.

Espeegee
Espeegee
in reply to tattybogle

It's professional arrogance bound up in control. We can't have folk getting well by cutting out the doctor who of course has trained for years to be in the position of telling you what's best!

Polaris
Polaris
in reply to tattybogle

Thanks for your input tattybogle and espeegee. The fact that the last and only 'drugs' I'd taken in desperation and pain - three paracetamol - was ignored.

There were four of us being assessed that day (three others were men). The doctor had the grace to apologise for asking how high my pain tolerance levels were ! Not one of the men was asked this question 🙄 Had no compunction in telling her I'd had two home births, which they later told me went so well they could have been filmed 🤦‍♀️

As an old lady now, I find it frightening to compare the amazing midwife and GP who attended me and my small children, with experience of many presentday doctors' over reliance on drugs without thoroughly going into history or symptoms.

I found many safe uses for homeopathic remedies for my family over the years with good effect - a friend's GP daughter tells me she now sends all her most difficult cases for assessment at the Royal Homeopathic hospital, London.

tattybogle
tattybogle
in reply to Polaris

I had a home birth too Polaris , with a wonderful independent midwife, who was my friend who lived up the hill. No painkillers. All well . 4 hours all done .

We lived in a yurt by a river, first Gp very unhappy with idea, despite previous uncomplicated birth.

Replacement Gp ,who walked down the valley to do the new baby check said he'd never had such a lovely afternoon at work !

Cant wait for some young whippersnapper of a doctor to ask me about my pain tolerence :)

Polaris
Polaris
in reply to tattybogle

Sounds idyllic tattybogle and I'm so glad all went well for you too 🤗.

Some doubt too whether I'd be allowed a home birth, as I'm 5'1 and slightly built. Midwife was a wonderful Yorkshire character with years of experience and completely supportive of new mum and baby . I had complete confidence in her but the new, young GP called out was terrified as she supervised his stitching 😳

Espeegee
Espeegee
in reply to tattybogle

Daughter decided on a home birth for her first, rather late in the day, about 34 weeks. Midwives were horrified (she lived out in the sticks) Their tactics to persuade her otherwise were outrageous, they came in pairs nearly everyday to talk her out of it, when that didn't work, they threatened her, said if she went into Labour outside of two weeks before or after her due date they would t attend. When she replied she'd just get on with it on her own they said they would report her to the Police! When that had no effect, the woman at the very top wrote to her GP asking questions about her mental health. She also visited to tell her she couldn't have the baby at home. Said what if something went wrong, miles from help etc. you can imagine what happened when she then added that she was hiring a birthing pool 😂 none of the midwives had ever experienced a water birth. The whole experience was shameful. All I can say was that on the day the two midwives who turned up were absolutely great and the whole experience was amazing, with baby there were 4 generations present, my mum, who'd had 4 children, was in awe, she'd never witnessed a birth before 😊

tattybogle
tattybogle
in reply to Espeegee

Well done to your daughter for pushing! for what she wanted . Brave girl.

sorry Polaris ... totally off topic , but fun.

I don't know if i would have had the courage to insist, if i hadn't already got a midwife friend in my pocket .

We couldn't have afforded her services, so we bartered , She delivered our baby , we built her a yurt.

Everybody happy (except the first GP), virtually no cost to the NHS

Polaris
Polaris
in reply to Espeegee

I'm completely horrified that they went as far as questioning your daughter's mental health 😱 - so utterly outrageous.......

So pleased for you all that the whole experience turned out so well though 🤗 . Yorkshire midwife told me at the time that experience had proved, unless serious complications involved, mothers and babies usually fared better in a relaxed home environment and picked up less infections.

I'm not sure I would have kept my cool in your situation Polaris! ;-) Of course, when you're in great pain, and supine on a hospital bed, a doctor has the advantage... The sexism with regard to supposed differences in pain thresholds is not founded on fact: it's mere prejudice. If I can find the relevant section from the Maya Dusenbery book, I'll add it here.

I am really concerned by the doctor's reference to what seems to be a concerted effort to prevent people from importing medication for their personal use. If they (whoever they turn out to be) succeed in this, emigration will be one's only legal option.

UrsaP I know you too are concerned about the possibility of a regulation change to prevent personal imports of medication, whether on prescription or off. Have you heard of any developments?

Espeegee
Espeegee
in reply to Hillwoman

Is this the plan mooted a few years back to ban all "supplements" that then provoked petitions everywhere and so was shelved? Sounds like it's rearing it's ugly head again. There are apparently to few GPs to provide a decent service within the NHS yet they want to self protect against those of us who can make educated choices about what we choose to use as either alternatives or for support. They can't have it both ways yet they seem to be trying to organise just that.

Hillwoman
Hillwoman
in reply to Espeegee

Completely agree. Talk about wanting to have your cake and eat it! It may be partly the authoritarian and paternalistic impulse in too many doctors that's driving this, but I suspect this is also an underhand attempt to shut down irritating (in their eyes) patient protest by preventing us from exercising other options.

humanbean
humanbean
in reply to Espeegee

There are apparently to few GPs to provide a decent service within the NHS yet they want to self protect against those of us who can make educated choices about what we choose to use as either alternatives or for support. They can't have it both ways yet they seem to be trying to organise just that.

The Powers That Be are developing a market for private healthcare along the lines of the system in the USA. If people can help themselves then it reduces the potential for profit.

I used to have a dog. At weekends my husband and I would walk the dog in a business park. The number of substantial office buildings that had the names of private healthcare companies on was depressing. I also see a few such companies on an industrial estate I drive past on my way to Tesco.

Whenever the subject of selling off the NHS has come up in the news over the last few years my OH who used to work in hospital chunters 'it's already happened' and leaves the room :(

I believe him 100%.

The number of private companies that are allowed to use the NHS logo is huge, and it is all done to prevent people from realising how often they deal with the private sector when they have any medical treatment.

What little testing and tracing is done for Covid19 in the UK is all done by the private sector as far as I know. But you'll see NHS logos everywhere.

Thank you Hillwoman, I'd be intrigued to read about it in Maya Dusenbery's book......

Thank you too for bringing the subject back to the main message - preventing access to legitimate pharmacies in Europe and elsewhere for personal NDT and B12 for injection as, if this is successful, it would be life threatening for many, with even less control over health outcomes.

The medical profession needs to urgently brush up on up to date research, or at least be prepared to listen those who bring it to their attention.

Many on the PA forum are struggling at the moment to get even the pathetically few injections they are allowed. x

Hillwoman
Hillwoman
in reply to Polaris

In addition to the usual difficulties in getting appropriate B12 treatment, I've seen many messages on the two FB B12d groups I joined complaining that loading and maintenance doses have been postponed indefinitely during the current crisis. This is not regarded as a 'real' illness. Some people will suffer permanent neurological damage as a result.

Polaris
Polaris
in reply to Hillwoman

Outrageous that this is allowed to happen in spite of all the petitions, letters to MPs, speeches/questions in the House of Lords on why doctors are still ignoring the treatment of serious neurological damage caused by B12 deficiency and undertreatment of thyroid disease.

I can only sadly conclude that the powers that be all have vested interests in drug companies, private care homes, etc 🤑 or maybe, like the current Health Secretary, they really do believe you'll get all the B12 you need from broccoli ............

Hillwoman
Hillwoman
in reply to Polaris

Oh yes, broccoli. That famous source of an animal-derived vitamin. 🙄

I agree that positive change (for patients) is antithetical to the vested interests in healthcare. It's a fatal combination of medical conservatism in all its manifestations, plus mammon.

Marz
Marz
in reply to Polaris

I once read that over 80% of NICE members received payments from Pharmaceutical companies - sigh !

Hillwoman
Hillwoman
in reply to Polaris

I've had a quick look through Dusenbery's Doing Harm. It's hard to know which section to pick, because there is so much on the subject of pain throughout the book. There is plenty of relevance to quote here, but the paragraphs below are all from 'Part 1. Overlooked and Dismissed: A Systemic Problem; Chapter 2. The Trust Gap.'

She discusses the formal evidence that emerged from the 1980s onwards that women receive less pain relief than men, and less effective pain-relieving drugs, for major surgery and serious illness. She refers to a 2001 study by two researchers, Hoffmann and Tarzian, who reported on data showing that ' "Women who seek help are less likely than men to be taken seriously when they report pain and are less likely than men to have their pain adequately treated." '

Dusenbery says the researchers examined potential reasons for this bias, 'ultimately concluding that the main one was that women's complaints of pain are less likely to be trusted. "The subjective nature of pain requires health care providers to view the patient as a credible reporter", and women are "more likely to have their pain reports discounted as 'emotional' or 'psychogenic' and, therefore, 'not real' " they wrote. "These biases have led health-care providers to discount women's self reports of pain at least until there is objective evidence for the pain's cause. Medicine's focus on objective factors and its cultural stereotypes of women combine insidiously, leaving women at greater risk for inadequate pain relief and continued suffering." '

She goes on to say, 'The way women's reports of pain are received seems to be at least as influenced by cultural stereotypes about men as about women. The stoicism expected of men is cited as one of the reasons that their pain is taken more seriously; their reports of pain are less likely to be doubted, because it's assumed they're more reluctant to make them in the first place. But there's no rational reason that men's assumed stoicism should result in women's pain not being taken seriously.'

There is another set of assumptions here, discussed by Dusenbery at some length in various places, that these stereotypes about men's reluctance to seek help and women's willingness to do so, are based in fact, which is far from the case: '...men may indeed be reluctant, but women may be just as reluctant - perhaps for different reasons. And, as we'll see, one of the common reasons women give for delaying getting medical care is a fear of being seen as a hypochondriac...Indeed, when it come to studies that look at what patients actually do, women are not, as a general rule, any quicker to seek medical care.'

There is so much valuable information and analysis in this book that you can open it at random and always find something interesting and relevant to the experiences we read about every day on this forum.

Polaris
Polaris
in reply to Hillwoman

Thank you SO much Hillwoman 💐for finding and posting this extract - so interesting and definitely one to keep.

Ironic really as I'd been reluctant to ring 111 in the middle of the night and then pleaded with GP not to hospitalise me if possible.

I know 111 have to prioritise in these difficult times but, being passed through several people in the system whilst in pain & trying not to be sick, answering the same tick box questions over and over until actually put through to a doctor....... . looking back, it all seems slightly surreal......

Xx

Hillwoman
Hillwoman
in reply to Polaris

It sounds awful. 😩The 111 system is notorious for asking reams of irrelevant questions, thereby wasting time...

I've been concerned that changes in law post Brexit will make it harder to get hold of European presription T3/NDT in the future, just when i'd decided to look into that route on private prescription.

the idea that CCG? or whoever are trying to stop it too, is depressing to say the least.

buddy99
buddy99
in reply to tattybogle

I was trying to get my hands on Thyroid S (NDT) in Canada but it is blocked. I would have to get a PO Box in the States and pick it up there. Now who wants to go through all that rigmarole? And who wants to go to the States (especially in the current situation)? It's just crazy how we are prevented from getting better at every turn. However, there is a plethora of medication readily accessible for each and every symptom that comes with below optimal levels of thyroid hormones; antidepressants, cholesterol drugs, anxiety drugs, sleeping pills, antacids, etc., etc. One can easily end up with a multitude of drugs without the root cause ever been explored. It blows my mind!

tattybogle
tattybogle
in reply to buddy99

It helps somewhat , Canadian buddy, to know it's not just us in the Uk that 's being picked on.

i suspect the root cause is that nobody can 'patent' a pig !

but why they wont make T3 available is harder to fathom, except that they would have to admit they are wrong about Levo being enough for everyone.

I predict an outbreak of 'Respectable Granny caught Smuggling Drugs' articles over the next few years, as i'm not hopefull there will be a change of medical strategy anytime soon.

Still ,We know the truth of it , and information is easier to find now.

But i'm just soo bored of saying 'no thankyou , i don't want any antidepressants' (for my Knee ! )

buddy99
buddy99
in reply to tattybogle

Yep. My doc wanted to fill me up on drugs and when I said "no" he answered, "So, you're just giving up?!" (whatever he meant by that). And I thought, "That's right. I've given up on you helping me in any way.", but, of course, I did not say that. Let's face it; our medical systems are bottom line driven and exist in a hyper capitalist environment where everything (including people) is a commodity. So on the one hand doctors are trained to aid profit to pharmaceutical companies and on the other hand to save cost when it comes to testing etc.........or even taking time to properly listen to patients. The paradigm has to change.

Polaris
Polaris
in reply to buddy99

Well put again buddy99 🤗

Polaris
Polaris
in reply to tattybogle

My daughter has managed to hang on to her T3 prescription, even though the drug company has raised the price to an outrageous level. I believe it's still much cheaper in Europe though ? 🤔

Antidepressants for knee 😳🤦‍♀️

Make that two respectable Grannies....... Meanwhile still waiting in anticipation for Thiroyd medication and trying not to worry about what to do when this becomes even more expensive and harder to source.

buddy99
buddy99
in reply to Polaris

Oh absolutely antidepressants for knee!!!!!!! :D Antidepressants are the new antibiotics. I guess I wasn't so far of when I said that they are prescribed for everything........maybe not for hangnail. Now I'm thinking I might have been wrong about the hangnail.

Oddly enough, SSRIs have antibiotic properties (eg Prozac) and some antibiotics have SSRI properties (esp doxycycline) so how they are classified seems pot luck and arbitrary.

Doctors need to learn that antidepressants just make people worse, and they need ro learn that ADs affect the absorption of thyroid meds. If they gave patients the right thyroid med for them and not just the so called 'gold standard' levo we would all be much healther. Then they could include a vitamin D test at least once a year and give everyone the required vitamins. Who knowsif they did that we might not need so many thyroid meds and visits to doc surgery?!

A friend of mine was told 'we use antidepressants for menopause and lots of other things these days' - yes dont we know it?! . Thankfully she refused them!

Take care and keep safe!

JaneCx

Polaris
Polaris
in reply to JaneChapple

Thank you for this Jane. I didn't know antidepressants affected the absorption of thyroid meds - really important information when they're being prescribed for knees........

tattybogle
tattybogle
in reply to Polaris

I read the full list of possible side effects for Amitriptyline once, when prescribed it for nerve pain! I decided against it...

I've lost count of how many things i've been offered it for over the last few yrs.

I think GP practices are getting financial reward for prescribing it.

GP says at low doses it proves useful for other problems , not just as a tricyclic antidepressant......... maybe so, but i still don't fancy it. when i had tried it previously ,i ran into the back of someone at a junction the next day 16 hours after i took just one. ( My only 'bump' in 35 yrs , which cost the loss of full No claims bonus)

Hillwoman and tattybogle

It is really hard not to despair at the ignorance and lack of empathy displayed by many doctors and those in powerful positions at this specially difficult time.

Although I have come to accept that it was, in the end, too late for my sister to avoid serious neurological damage even though we thought we had convinced her GP and psychiatrist of the thyroid/B12 connection , I find it even more difficult to accept the failure of surgeries to condone self treatment of thyroid disease and B12 (as diabetics do), when there is so much at stake........

The many letters written to GPS, MPs, psychiatrists, petitions etc. over the years seem to have fallen on deaf ears.......

Hillwoman
Hillwoman
in reply to Polaris

I think you're right. :-( The other day, Paul Robinson commented under a post by Diogenes, saying that he felt in many ways endocrinologists have become even more rigid and dogmatic about diagnosing and treating thyroid disorders over the past 30 years.

Polaris
Polaris
in reply to Hillwoman

Definitely, its as though society in general has become less responsible, more polarised/rigid - 'do as we say or we wash our hands of you'...........

Espeegee
Espeegee
in reply to Hillwoman

Maybe as they age the just get lazy/sloppy?

buddy99
buddy99
in reply to Espeegee

In my experience it's more the doctors fresh-off-the-production -line who have the arrogance, rigidity and adherence to numbers (and medications). A doctor in about his early 60s, who diagnosed me with hypothyroidism said to me, after I told him that all others had thought my TSH was perfect, "We are not accountants. We are doctors. We don't balance numbers, we treat human beings." I could have hugged the guy. But HE had taken the time to talk to me whereas the other doctors had just looked at TSH and T4. Unfortunately he is a rheumatologist and had to refer me and asked the next doctor to discuss his report with me, which she somewhat did. However, when I asked whether hypothyroid had been mentioned, she exploded on me to the point that I apologized for asking. I did ask to have a copy of the report, which wisely the rheumatologist had also advised the doctor to give to me, which she practically threw at me. But, lo and behold, hypothyroid was totally mentioned in the report with explanation from a rheumatological point of view (such as slow reflexes).

Marz
Marz
in reply to Polaris

I have recently read - This is going to hurt - by Adam Kay. He kept a journal from Junior Doc to Senior Registrar and the book is the result. It makes for shocking reading and explains a lot of what is going wrong in medicine today. He left to write comedy.

My other recent read is - The Secret Barrister - also very alarming. Constant government cut-backs are making for a shocking state of affairs and he concludes - we have a legal system but not a system of justice. At times it made me shudder - so glad I read to the end so I am more aware but also fearful of the future.

It seems two very important ' institutions' are on the point of collapse - so what of the future. I have read there is a new department now part of government - 77 Brigade - mostly military busy with surveillance. The military services along with the police have been reduced - could it be that they will be combined in the updated digital world ?.

We already know that many GP and medical appointments will not return as before and on-line consultations will become the norm. So much will be missed ...

We must keep supporting each other and self-treat our thyroids and deficiencies. Someone here will always be around to help and support and we will find a way around new challenges. I have a plan ... 💖

Polaris
Polaris
in reply to Marz

'The Secret Barrister' was on my reading list when stress levels are down Marz 😀

Having had personal/a little experience of working in legal firms, I was already thoroughly disillusioned. Reading the best selling book, 'The Salt Path', though left me aghast at how such a blatantly unfair justice system could leave almost anyone vulnerable/homeless/destitute after a lifetime's work........

All v. alarming. Not heard of 77 Brigade but suddenly finding the enormous and secretly erected G5 mast hidden in trees/ school playing fields near me rather sinister.....

Yes, thank God we are able to support each other and resist those who would try to suppress knowledge.

Marz
Marz
in reply to Polaris

Will put The Salt Path on my list thank you !

SlowDragon
SlowDragonAdministrator
in reply to Marz

The Salt Path ....great book...

tattybogle
tattybogle
in reply to Marz

Welcome to 1984 :(

once upon a time that was in the future, and we were all much younger nuisances,

but now we're older and so much more experienced , Big Brother had better look out. :)

Espeegee
Espeegee
in reply to Marz

I was given the first book for Christmas, I can see I'd better read it!

Marz
Marz
in reply to Espeegee

An easy read as he has that easy style. If it wasn't so serious it would be an amusing book ! I can see how he has slotted into comedy - his humour must have kept him going ....

buddy99
buddy99
in reply to Marz

I will definitely round up that book. I'm a librarian so I come across a whole lot of interesting books on the subject. It seems that more and more people, including MDs are speaking up, especially when a chronic disease has befallen them and THEY now have to sit on the other side of the desk. Currently I'm reading "How Doctors Think" by Jerome Groopman , MD. It shows how human doctors really are on their high horses. He methodically points out all the pitfalls they can become victims of. It was just so good to see that doctors are really not superior beings and come with all the imperfections like everybody else. :)

Marz
Marz
in reply to buddy99

Thank you for the book title ! I have also read - When Breath Becomes Air - Paul Kalanithi - his battle with lung cancer. A successful neurosurgeon in the US.

Sorry to hear about your sister. You are right. It is extremely hard not to despair. I try to look at the positive side of having to take responsibility for my own health and keep learning about my disease and all options open to me. For many decades I trusted doctors, no questions asked, and have paid the price. After all it is the patient who bares the consequences not the medical system, which, in the States, is the fourth leading cause of deaths after the usual culprits. It just infuriates me that people have to die unnecessarily because of arrogance and ignorance.

Well said - both posts buddy99 🤗

Thankyou everybody for such an excellent Book List, i now have plenty to be reading while i wait for my depressed knee to feel better :)

Well to counter sll the gloom of nhs tactics of cutting of our sources of medicines.......the logic behind that seems a little slewed seeing as we are saving them a ton of meds and lots of unnecessary referrals for symptoms! Anyway my GP has kindly renewed my daily b12 injections script for another year....she said they do you good and can do no harm. How refreshing! 😊😊

Polaris, I was going to reply to your post when I read it the other day, and say how disgusting and awful it is to be told by a no doubt smug Dr that we will soon be unable to buy our life saving meds due to pressure from an organisation that works to maintain Pharma interests, but as it brought to the fore my deepest fears...1 - to have to go to hospital for whatever reason and have to declare the massive dose of T3 I need in order to have a life, and 2 - that I would at some point to be unable to buy what I need...I went into a spin and turned the iPad off!😳

Having had to restore my own health after 25 years of illness and misery, I now avoid the smirking Drs at all costs, but I'm sure at some point an accident or some event a paramedic can't deal with will occur and I will once again fall into their hands. The idea that I could be so afraid of getting medical assistance in a country renowned for its health system seems ludicrous, but is nevertheless a fact.

And the fault is not mine. It's the fault of all the Drs and specialists that repeatedly said, [after sudden paralysis for 3 years following a vax, incurring various hospital stays]...I had not been damaged by a vaccine...my thyroid was fine [it had NO output]...I did not have a vit D deficiency[4]...I did not have a folate deficiency [well below range for 20 years]...I did not have a B12 deficiency [always bottom of range, with severe neurological symptoms, which disappeared with large doses] I 'only' had ME/CFS.

When I refused/stopped the myriad of drugs I was prescribed that made me worse, I was considered crazy and difficult, yet all I wanted was to get well. I had lost my career and very nearly my home. I even took family members with me to try and get through to them that the meds made me worse. Because of the tremors and head nodding, I ended up being unable to drink from a cup, and had to use a baby's beaker, and couldn't walk unaided. These were completely cured by very large doses of B12, yet they still wouldn't believe it. Presumably I had invented all these symptoms and their cures for decades😳 yet when I miss doses, the tremors are back with a vengeance.

My medical notes were a revelation and a travesty, and I only have myself to blame for listening to their nonsense for so long, but when you're very ill, you just don't have the stamina to research or investigate, and of course I started out with loads of misplaced trust😕 Thank goodness my daughters were able to help. My first GP who is long retired was great, but I wasn't ill then! I have only met one reasonable GP in all this time, but he left the area 2 days after I discovered him, so that was a very brief glimmer of hope.

If you were told your homeopathic remedies were the cause of your problems, I dread to think what they'd say about me! It really is terrifying to think of having to creep around the black market for the rest of my days like a criminal because Drs refuse to test or prescribe what we need. I would be very disabled without what I buy for myself, and who are these people to actively prevent our wellness? It's bad enough that we have to go it alone in the first place. It's supposed to be a free country, and surely good health should be a basic human right? Apologies for long, moaning rant. x

tattybogle
tattybogle
in reply to Mamapea1

I'm very glad you came out of your tailspin and managed to write that very inspiring 'rant' . It has done me good and moved 'B12 Test ' to the top of my shopping/arguing with Gp list.

Absolutely no apologies needed as far is i can see...... might even win 'rant of the day !'

thankyou. x

Mamapea1
Mamapea1
in reply to tattybogle

Thank you...what an honour!😎 I'm glad you've decided to test the B12 ~ it's so very important, as they all are...make sure they test the folate and D too! Good luck with the argument🍀 you may need it if your GP is anything like mine.

I thought, as did my family, that I had MS or Parkinson's, which I figured along with the ME, would surely finish me off. GP actually said one day [as I was virtually carried into the surgery] that it was my 'nerves' and blamed me for not taking anti anxiety meds!

I don't bother begging them anymore, I just do an occasional medichecks to put my mind at rest and make sure nothing's changed. I'm just so glad I understand more about my health now, even if they don't😊 x

waveylines
waveylines
in reply to Mamapea1

Mamapeal what you have written could have been me! . You describe me to a tee before I finally took control . I too was dumped with the CFS/ME diagnosis and loaded up with drugs that mustve cost the NHS to no avail. Symptoms too many to write, horrendous tremors which scarily led to ever declining mobility & incontinence. Finally I too embarked on a private search to find the resolution. I have battled long and hard. Of course it wasnt straight forward and the answers resulted in a ndt and daily b12 injections & vitamin D. The fact that the central cause was universal Vitiligo which can result in hypothyroidism, b12 deficiency & vit D deficiency passed the nhs completely by even though its written on their screens & the nhs had diagnosed Vitiligo years before. I fought long and hard and managed to get all three treatments eventually to be prescribed by my GP. And these days am much recovered though there is b12 deficiency resultant nerve damage that is likely permenant due to slowness of the nhs nedical profession as those tremors spanned over 11yrs. I found many nhs medics willing to write of my symptoms as idiopathic and only private doctors & knowledgeable people willing to delve further.

To hear after all of this, that treament & critically needed meds may disappear as the nhs medical professions blind arrogance & need to proove their point at the expense of patient health by closing avenues to critical treatments both on the nhs & bought privately is horrifying and truly Scary. I ask will the medical profession ever come out of this pea fog, engulfing cloak of madness, no matter the evidence to the contrary, to clear vision?

Absolutely no apologies Mamapea1 - you've put into words almost exactly how I, and am sure so many others here, are feeling, so thank you........

To come to a stage where you lost your career and nearly your home is shocking - there must be so many untold stories similar to this that need to be heard 😱

So thankful I found this forum, to be able to vent frustration at the system too ! It has given me hope that we're not alone and I'm sure, together, there will be a way to find access to the meds we all need.......

Thank you so much x

Thank you for your kind reply, but I did go on a bit😊 It's just so infuriating...I had reached the stage where I thought I would never regain my previously good health, and having done so it feels like nothing short of a miracle✨yet I can't be left alone to get on with what's left of my life because of medical dogma/corruption. I am also so thankful for this forum, and I sincerely hope we can all find a way to continue to access what we need.

My youngest daughter has recently discovered [via medichecks] that she has Hashimotos, despite 3 Drs in different areas of the country repeatedly offering antidepressants with no blood tests. Fortunately, she was already supplementing with with the usual vits/minerals, but her levels were still very low.

We're hoping to see a private endo as recommended on here, but I do fear for her future in this medical environment. Hopefully she hasn't inherited my genetic features that render Levo completely useless, or she'll be joining us! At least she has access to knowledge that I didn't have, unless of course it all gets censored😷

I think I may just be a born worrier! 😂 x

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