I am worried re new government

[Hectorsmum2]

I am worried they may restrict our ability to self treat. Ever so often a shock horror story hits the press about people buying prescription meds online and I can imagine current gov having knee jerk reaction to this. Problem is they have such a large magority they could push stuff through quickly with out much debate. Thinking about going to see MP to discuss, try to educate. I think we need to raise the profile of our issues with them before they react. Any ideas?

[Jo5454]

Morning...that sounds a great idea! I don't know very much about how the whole system works, others no doubt will, but it would be good to know. Could it carry more weight if many of us contact MP,even by letters at a similar time? There's the other side of the coin too, the new government say they're interested in getting those who are currently unwell and awaiting treatment, back to health and potentially working again? Maybe they'd be interested in knowing ? I know it feels a hard enough job trying to get our local GPs to understand, but anythings worth a try!

[Hectorsmum2 in reply to Jo5454]

It is hard to know if we are better staying unnoticed or if we should be much more vocal. I think maybe letters and petitions about the lack of good thyroid care without focusing on our self treatment would be a good way to go so they know there is a big problem that we are reacting too rather than us being irresponsible with our health.

[tattybogle in reply to Jo5454]

re. getting people back to health and working ( and raising awareness of the continuing problems many of us face after diagnosis).. this paper from Aberdeen business school is perfect for sending to MP's : healthunlocked.com/thyroidu...

re. whether to raise the issue of 'obtaining prescription meds without prescription from internet'... my personal instinct is to "Keep Schtum and Carry On" .... i think the new govt will likely be far too busy trying to sort out 'everything else' to have any time/ interest in trying to change this this ... it's not causing a big enough problem in society generally for the govt to have any urgent interest in focusing on it. ... it's probably in the 'far too tricky to deal with' box anyway .... international offshore companies etc Hectorsmum2

[HowNowWhatNow in reply to Jo5454]

There are a lot of us.

If Thyroid U.K. could very kindly write a summary of the recent medical prescribing rules re: non-acailabk meds and giving a few choice quotes from recent research (eg. Aberdeen Nusiness school / university survey result on the shockingly high dissatisfaction rates women have with conventional NHS treatments) and making connection to sex and gender discrimination plain, we can then all draft and write / copy it out for our individual MPs / Lords. And explain how the history has been directed by the expensiveness of the medication in many areas - with supporting evidence - despite this being illegal, as it is tied to rises and falls in these prices. QED.

When there are so many available levers to pull on - compared to those in the endocrinology world - and eager new MPs - in all Parties except departing administration - to educate, there was never a more opportune time.

Otherwise, yes, we are sitting ducks. And that’s no hyperbole.

I read Far From the Tree by Andrew Solomon just before my diagnosis , when I thought I had dementia, and have never forgotten (through the brain fog!) that patient advocacy groups have advanced the science behind medication / diagnosis care and the understanding of health and SEN minority people who were affected (benefited) by these advocates - so far often family members - in the last 50 years. More than any Nobel prize winners have benefited them, in most of these groups’ cases.

If Thyroid U.K. and other groups won’t take up our cause with such an urgent issue and concern for thousands (tens of thousands?) of the people their charitable funding and objectives exist for … we may need better and more responsive patient representatives to be found, eg. Admin members here.

Not “just a thought”, a passionate plea for charities and MPs to take us seriously.

[helvella Administrator]

People have been concerned about this for many years.

I do think that raising the issue has lots of appeal. My primary concern is if this raises the whole profile of personal importation of medicines.

It might be appropriate to point out the negative consequences of preventing people accessing the medicines they need. (Or want, after all, quite often we do not know ahead of trying them whether we need the medicine or not. But we know we want the option. Like having the choice to purchase desiccated thyroid, then finding out if it helps.)

There is also the issue that restricting personal importation by internet purchase has a disproportionate effect depending on how rich you are. The well off will be able to travel to obtain what they need. The less well off will not be able to afford to do so.

We should be able to garner support from some who take these medicines. For example, Sarah Vine (newspaper columnist and self-publicist) has written about how she takes Armour. But if she can still exploit private prescriptions, I do not foresee support for obtaining without prescription. And the well off will do what they can to ensure they can still access Armour and not care whether you and I can do so. So routes through private practitioners will be staunchly defended.

And I imagine literal personal importation, where you carry some in your hand luggage, will be largely ignored. It is a huge job to check everyone who might be carrying medicines. Especially as many could have prescriptions from foreign doctors, and for foreign medicines. Making the overheads of checking a potentially heavy burden for customs.

[HowNowWhatNow in reply to helvella]

Sarah Vine will not be a popular advocate for our cause in Westminster. Michael Gove and her pen are not - heavy understatement - beloved in KS’s circles. If anyone here does know her, please can they ask her how she - using her decades of experience as a Westminster watcher - recommends we develop a strategy and who - especially - she has observed action who understands the ethics and science around these subjects, campaigns in ways that are effective and so on.

Headlines in Good Housekeeping and other magazines - those with a wide readership - commonly found in doctors’ waiting rooms will also be beneficial. I must walk around with my eyes closed because I have never seen articles on this in women’s magazines.

[StitchFairy]

It's natural for all of us who self medicate to have worries like this. But realistically, what benefit would there be to the current (or any future) government to do this? If they have more than a handful of brain cells, would they not realise doing this could place a tremendous extra burden on the NHS? Don't they have more important things to deal with than restricting what has been our right for decades?

[helvella Administrator in reply to StitchFairy]

The only areas where there might be real benefits to the government and population are where there are clear negatives regarding specific medicines.

But they have already applied effective restrictions on, for one example, diazepam. To the extent that even those who might find diazepam is beneficial, and avoid addiction issues, have real problems getting it.

There is no need for a blanket restriction.

[HowNowWhatNow in reply to helvella]

That doesn’t stop people - eg. doctors - whose careers have rested on denying women these medications from lobbying hard.

Logic / patient satisfaction is not the driver on that side of the table.

[HowNowWhatNow in reply to HowNowWhatNow]

Thyroid U.K. (hi ThyroidUKSara thyroid-uk ) I can’t find a handle for the whole org I am sure of so have used yours hoping that you - if you are attached to the organisation - will respond to concerned members or pass the message on and arrange for a response in that way).

I am sure you are all engaging with members of the new government and with HofL members as we speak. Can you please fill us in on your feelings re: how members should engage, so we can fill all mailbags with useful stats, facts and briefings, or just our personal stories, (which may be even more powerful)?

[jodary in reply to StitchFairy]

Hi, how do you go about self medicating? Would be very worried about buying T3 online myself

[StitchFairy in reply to jodary]

Only buy from tried and trusted sources.

[jodary in reply to StitchFairy]

But how do I find them ?

[helvella Administrator in reply to jodary]

Asking for possible sources of supply is allowed. Write a brand new post!

If you have not already done so, adding some information to your profile might help and encourage replies.

In particular, if you are not within the UK, please make this clear. Some potential suppliers will only supply specific countries.

As we can't name suppliers on the forum, any replies must be by Private Messages (also called Chat). This post will be closed to replies to prevent any information being posted here. You might already have requested Private Messages.

Once the post is closed, there can be no further replies on forum. It is best to ask for sources in a separate post. And to make sure to give sufficient details as they cannot be added once the post is closed.

We hope that you get some helpful responses but, if you do not, feel free to post again.

To avoid being scammed by unscrupulous suppliers who we know contact members when requesting suppliers of thyroid meds, you are encouraged to contact a member of the Admin team to see if we have any feedback on any recommendations that you are sent. Please read the post linked to below and don't part with any money until you have checked any supplier information with an admin.

However, admins cannot make any recommendations themselves. This is expressly prohibited so do not ask us to do so.

You will find few, if any, of the potential suppliers accept the best known and most trustworthy forms of payment such as PayPal and credit cards. The major payment companies are very wary of medicine suppliers.

[StitchFairy in reply to jodary]

Ask here on the forum. But buying the meds is only the first step. You need to understand how to take it too, and be able to monitor your own levels.

[helvella Administrator in reply to jodary]

Check this pinned post:

📢 ⚠️ Purchasing thyroid medication without prescription - Please Be Wary! ⚠️ 📢 (Repost)

healthunlocked.com/thyroidu...

[TSH110 in reply to jodary]

Ask if you do actually need it or are you just badly optimised on Levothyroxine. Then act. If you still want to self medicate, research it very thoroughly and ask for help here by PM. It is not to be undertaken lightly.

[jodary in reply to TSH110]

In all honesty the thought of self medicating scares me . I have enough on with my other medication and would potentially need guidance at starting something else. I am doing my best to optimise my vitamins in the hope it will improve my conversion . Thank you

[radd in reply to jodary]

jodary,

Most of us who have self medicated have only done so because we were mistreated by the NSH, remaining under-dosed, sometimes on the wrong meds and ignored for years.

We have sourced meds through other members recommendations and dosed as per advice/experiences of others. Is it risky? Yes of course, but that is what we have been driven to. A very sad situation but a large reason why the forum is so busy and members feel so connected.

[jodary in reply to radd]

It makes me feel quite tearful . I’m 67 now diagnosed hypothyroid when I had my first baby in 1983 and from then struggled. Annual blood tests, everything normal. Visiting gps with various problems, put on antidepressants accepting them desperately wanting to feel able to cope with daily life. Now having access to medical records seeing my blood results over the years anything but normal. All those wasted years and now probably too late

[TSH110 in reply to jodary]

It’s never too late! I was ill for decades and nearly died of it but I’ve made a good recovery so it’s possible.

I’m sorry you’ve had such an awful time of it , we just have to look forward and do our best to make it as good as it can be, we can’t get those years back now. It’s made me a more sympathetic person to the problems of others and I find it interesting what the lack of thyroid hormones did to my body and mind in a perverse kind of way it’s a pretty unusual journey to go on & deffo not recommended.

[TSH110 in reply to jodary]

Oh so was I, quite terrified, but I felt so dreadful it was out of pure desperation. I was lucky, it was very successful and I feel a lot better on NDT than I ever did on levo, my conversion was very poor indeed.

It is not a dangerous as it’s made out to be as long as you are sensible and up the dose slowly with time for it to settle using a decent protocol. It was used for a long time before synthetics appeared so it’s a long history of having been tried and tested. There’s a lot of scaremongering about NDT that simply isn’t true. Hillary Clinton takes it!

Do everything you can to optimise your current thyroid hormone therapy but keep in mind that there are options if things don’t look up.

[Bertwills in reply to jodary]

Many people, myself included, have started using Roseways Pharmacy who have a prescriber. It’s pretty cheap for a booked phone appointment & then order of T4, T3 or NDT . All in the UK & safer than from overseas suppliers. You need blood test results to show & previous prescriptions help.

[helvella Administrator in reply to jodary]

Self-medicating, from scratch, is likely a very tough path.

Many who end up technically self-medicating do so after initially getting a prescribed treatment. But problems occur which force self-medication. Examples include:

Refusal to adjust doses;

Refusal to allow liothyronine (T3) or desiccated thyroid;

De-prescribing, even when current treatment appears very satisfactory;

Refusal to continue prescriptions when doctor, surgery, location, changes;

And lots of other issues.

Self-medicating is fundamentally a bad thing - we all need help and support and ideally that would be from a qualified and capable professional. But when that is not forthcoming, we end up in with needs must and the devil driving.

[Sparklingsunshine in reply to helvella]

I agree with you that self medicating is fraught with issues and in an ideal world it wouldnt nenecessary, but from a purely personal viewpoint I've found it liberating. Now I've found a reliable source and 9 months in I'm more confident about what I'm doing.

I've never sought NHS T3, I could have pushed for a consult as my CCG is one of the better ones, but I knew it would be a long wait, there was no guarantee of success in either getting a referral or being prescribed T3.

I didnt want to be beholden to the whims of an Endo for my dose. Or have them pearl clutching about my suppressed TSH. Or the hassle with my GP being difficult about the ongoing cost of prescriptions, or keep having my brand changed to whatever was the cheapest or which one the pharmacy could source.

Or potentially having my prescription stopped if there is another economy drive on the NHS. I also didnt want the cost, which can be considerable of going private. It seems to me that no matter how you get your T3 then there are issues.

[helvella Administrator in reply to Sparklingsunshine]

It is stepping from not doing so to doing so that can be daunting.

Also, I meant to include some points like the way we are pushed towards self-medicating for many things. Advised to take paracetamol, ibuprofen, or whatever that we buy ourselves - and find it very difficult to get diagnosis and support.

Or, like me, I was getting a prescription-only medicine but it became unavailable, then discontinued. So I buy my own from an internet source. The alternatives offered by my GP included heavy-duty pain medicines (gabapentin, pregabalin), anti-depressants (amitriptyline, nortriptyline, etc.) and other options which are all very questionable. She absolutely agrees with me - carry on buying your own mild, almost innocuous but effective product. But she cannot do anything to help.

I was, therefore, forced into self-medication for myself.

[Sparklingsunshine]

I think the new Govt have more pressing issues if I'm honest. The Tories didnt seem bothered about closing loopholes so I think its unlikely that Labour will be in a rush to. They've got a lot of stuff in their inbox to deal with.

[TSH110]

Last time we moaned about thyroidS it was made much harder to purchase on line so I’m disinclined to fight what isn’t even proposed (to my knowledge) in case it gives them ideas and not ones to support us.

I do moan repeatedly to my MP about the poor diagnosis and treatment of thyroid disorder and the lack of choice in medication on the NHSand have made it plain I want NDT to be available on prescription. And synthetic T3 of course and for it to be OUR choice which we take.

I doubt it will make one jot of difference to our plight but drawing their attention to getting meds on line seems to be asking for trouble.

[Rapunzel]

We understand, Hectorsmum2 and you jodary It's a damn sight easier to buy my jazz woodbines than it is to obtain T3. GPs in our benighted country seem to think that T3 is akin to cocaine.

Perhaps I am unusual in having meddled with both, although Columbian marching powder use is rife in the City, where I used to work. I am happy to confirm that there is no question that T3 is useful, whilst coke just makes you talk b*llocks, very fast and often, as Sting said, means you have more money than sense. Tongue very firmly in cheek, let's move on...

My alternative thyroid meds are pretty much unknown or proscribed by medics here. What you have in the TUK forum is a wonderful community that can aid by giving their lived experience, which, trust us, is a damn sight more enlightening than your GP telling you that you are 'normal' or 'in range'. I will happily give a Glasgow kiss to anyone who calls me 'normal', ever again.

[Sparklingsunshine in reply to Rapunzel]

I've always had my suspicions that many politicians partake of coke. Now you've described the symptoms my suspicions are confirmed 🤭