Clear Margins

I’ve had the most surreal day. It seems to me to be the pivotal point in two months I would not want to live through again but which, however, I would wish on my worst enemies, having become so un-nice.

Let me backtrack to where it began to pivot – Thursday night in bed. I lay there, feeling this pleasantly sinking feeling in my chest, a kind of heaviness, and realised that my heart rate was slow, strong and steady. Probably around or below 60 bpm. And I wondered if I should be worried, in a lazy sort of way, but really didn’t feel at all anxious. If I was dying, I thought, it was a most relaxed and pleasant experience, and I’ve been well-ready to experience slipping the skin for next phase for a little while now. In the hope and belief, and a sneaky suspicion from the scientific perspective, that it will be a far more fulfilling experience than watching this beautiful world go to hell in a handcart with madmen at the helm. Not that I’d hasten it, you understand. My death, I mean.

So I lay there feeling quite calm and peaceful and my thoughts floated to Nature-throid. Like a homing pigeon finding magnetic North I naturally arrived at NDT. Heart-rate slow … too little NDT? T3? T4? And I have been a little tired lately, and experiencing something of a relapse (Post Exertional Malaise by now) in the ME/CFS. But that’s not surprising since my OH cannot lift anything heavier than a kettle since his op 2 months ago. Which means I’m being killed by doing everything heavy like the bins, the logs, the coal and the dogs (they pull like freight trains so he can’t) - for which I use the electric buggy at the local Country Park to give them a good run.

I must digress here – this buggy is no obesemobile for fat geriatrics, although I am beginning to suspect that actually, I look like one. Oh no, this b**ger is a Tramper! A four-wheel drive, all-terrain vehicle that scoots along at 8 miles an hour and leaves far behind the other walkers with their obsequious looks of sugar-coated pity and artificial cheeriness, and cutesy comments about “can I have a lift” and “I could do with one of those”, which are all euphemisms for “fat old bag, thank God I’ll never get to that stage,” or “wonder how long she’s got”. Condescension of which I’m long past worrying about because, fat though I may be, I have a killer shape (i.e. Marilyn Monroe, not Harold Shipman), naturally curly hair dyed the closest blonde to what I’m seeing is really a lovely shade of silvery-white at the roots (noooo – not ready for that yet), and I’m rather good at what I do. And I’m intelligent enough to recognise their total lack of self-awareness or the subtle symptoms of their patronisation which, even if they have the capacity to understand the concept, they would vehemently deny. Which they evidently haven't, so they can kiss my tailgate ta-tah, especially at twice the speed of your average jogger.

Anyway, I’m lying there feeling this slow heartbeat, and the upshot is, I realise that I’m utterly knackered. So, I’m thinking, I don’t think it’s the thyroxine levels, although I’ve been sitting on a thing for a blood test at the local … hospital … (Blackpool. I say no more), so I think it’s time to get it done (the blood test). Which then brought up an issue that has been looming on the horizon for the last couple of years.

To endo or not to endo? That is the question.

Said flighty Money-bug charges £75 for a telephone conversation that has never lasted more than 20 minutes and all without her notes on me because somehow she never remembers to take them home with her for our lazy Sunday afternoon chats. And I keep on calling simply because her writing a prescription for Nature-throid keeps my GP happy. But Money-bug has been making increasing noises about my TSH levels and the pressure she is under to ensure they are not suppressed indefinitely blah blah (yawn) blah. Yes, dear Reader, we have reached that finite point. Either I behave myself and start faffing with my NDT, aiming to bring up the TSH levels from ‘too-low-for-zero’ to the level of ‘keep-the-endo-nazis-happy’, or it’s “Endo endo!”

What made up my mind was the damn cheek of the effing pharmacy – Allium medical, who are listed for prescriptions on the TUK website so I’m not saying anything contentious here, charging me an extra £7.50 as an administration fee … because my script was only for one month and did not reach the £20 threshold to only pay the £6 postage! But they are the cheapest, tablet for tablet. Which means, after expressing my displeasure in no uncertain terms at the sheer charlatanry of the company for holding me to ransom, and that I will most certainly find another supplier – and then failing to find one other than at twice their damn price - I’ll have to eat a whole load of s**t pie to go back to them and give them my money for another script.

So here’s the crazy thing. Because of the implacably autocratic, egotistical, omnipotent endocrine cabal my GP is too intimidated to prescribe a drug – NDT – that is legal to prescribe on the NHS but is not licenced. Meaning ‘be it on her own head’, to the GMC. Yet, even though an endo is prescribing it for me privately, neurotic GP still won’t prescribe. And the doctor who is prescribing it often forgets both who I am and my medical history but wings it because she’s clever, making a steady income from me of £75 per session for half an hour max. Not that it matters about my medical history and the journey I have been on for the last 23 years. Because all that ****g matters to her is what my TSH level is. And her £75. Nice work, if you can get it. And what’s the craziest thing? Because of this culture of arrogance, ignorance and greed, I have now been forced to turn to the one place doctors warn you on pain of death not to turn to … THE INTERNET! Aaaaargh!!

Anyway, sorted.

So back to my surreal day, if you’re still with me. After quite a momentous decision in the night, yesterday my OH and I drove to the XXXX Hospital for an appointment with some fairly high-up bods, about the five page complaint letter I sent them, written over several hours the day after OH came home from hospital 2 months ago. I won’t go into detail but by now some of you might have recognised that I’m not really someone to be trifled with. Especially when my dander is up, and up it has been. I’ll bore you about the debacle of the experience of OH’s stay in hospital another time, but we had driven for over an hour to attend a really heavy meeting which took another hour, before crawling through traffic back home for another two hours when we picked-up the dogs from the babysitter and finally landed. And then had to almost immediately turn round and go out because we’d been invited to pay to attend a “Queen Tribute Band” at the local ‘little theatre’ (aka plebeian amdram). And here’s the surreal crown.

The Little Theatre is not quite a theatre, although it is indeed little. It is a long, narrow, high-ceiling oblong room with a stage at one end. It has the acoustic capacity of a monstrous boom-box which, if one were to be standing back to experience the music, would be quite good. But this was like being actually in the boom-box, which rendered the sounds as indecipherable as the sense that the gig was being played under water by sharks biting electricity cables for fun. What enhanced the overall quality, however, was the lanky electric guitarist playing ever-so-slightly flat, jerking about like two beanpoles supporting an exhumed torso that had left its teeph in a mug at home, head back, eyes closed in an ecstasy of gum-grinding transcendence. Not only that, he was sporting a wig - that appeared to be a dead something he’d picked up in the street and plonked on his head – back-to-front. This thing bobbed about around his sunken-cheeked face as though the paws of the dead poodle on his bonce were waving a last goodbye. And that’s not all. We were treated to a thrashing by said guitarist, alongside a good but normal-looking bass player and a drummer who played blindingly well but who looked like he should have been behind the counter at Gringott’s. All curious enough, until quasi-Freddie came mincing on.

Now Freddie Mercury, God rest his soul, was indeed gay but he never minced. Freddie aped mincing, true, but Freddie was a man who strutted. Quasi-Freddie, however, came mincing on the stage, little flabby buttocks wagged for the audience, hair slicked into a vaguely Freddie Mercury style, looking like his mum had dressed him in outfits she’d made for him to look like the real Freddie. It didn’t help that this rather old young man insisted that he stand with legs in lunge position and the microphone held in front of his genitalia, mimicking thereby an erection. For which, staggeringly, the odd little chap needed no prop a short time later in the act, when having left to change he flounced back on stage dressed in a tee shirt ripped from throat to petit muffin-top, revealing a chest that appeared to have been given a pubic transplant. He was evidently enjoying himself greatly, judging by the wee bulge, and appeared to be quite proud of this display of masculinity. Which was a good job since he might actually have been embarrassed by the fact that his mike didn’t work as he sashayed around the stage, working only when he sat down to play the piano. Except that, when the mike worked, you wished it hadn’t. And it was all VERY, VERY LOUD.

And all the time, every minute, there were people getting up from their seats and grinding past the toes of their neighbours to come and go with glasses and bottles and goatskins of what looked like beer or lager. And I mean, all the time. It was like being in a cattle market. By the third piece of ‘music’ I had to stud my ears with that little button of skin just at your ear-hole, but I was still deafened.

We came home at half-time, to get earplugs but, well, decided not to go back. So we sat and Watched West Wing, for the intelligence, wit and principles, and for a bit of cultural irony, and wondered what the hell was all that about? As in, what kind of nightmare have we just come through, for the last two months?

Will tell you a bit more about that sometime.

The good news, when we will be able to feel it?

Clear margins.

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16 Replies

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  • Glad you got that off your chest xx

  • 😄 Very droll! 😄

  • Loved your description of your most surreal day, it really made me chuckle, look forward to the next instalment you could take this up for a living.

  • Thank you, and Almost there..

  • I'd much rather you were more demonstrative with regards to your feelings still, early days yet. 😊

  • 😂

  • After 18 years on T4,I moved to coastal Cumbria & the local GP not only agreed to FT3 &FT4 tests,she emailed my results to the local NHS endo,who agreed to prescribe T3(40 mcgs to add to my thyroxine).

    There followed over 2 years of improved health-especially mental & physical fatigue,but many other symptoms improved or disappeared.

    Then I was told I had to go back on thyroxine,due to the T3 debacle.I made an appointment with the endo(who said my local endo had the highest number of people on T3 he had come across)He said he would not prescribe T3 for me,as my FT3 before I started liothyronine was 4.7(3.80-6.00)showing I did not have a conversion problem.

    I then made an appointment with my GP to ask if she would be willing to monitor me as usual,even though I was going to self-medicate BYO T3.She agreed.

    I have just bought my first batch of Naturethroid over the internet,using the source recommended by many PMs from users.(I am not happy going back on thyroxine & need some T4 as on T3-only I have lost a huge amount of hair)

    I have been buying my own T3 online for a while,to top up NHS T3,but the Naturethroid supplier is very impressive in its set up.

    100 1grain tablets cost me £52.26 including shipping.(The £ is weak at the moment,of course).I had to pay VAT at customs because there is no VAT in USA-£8.34 plus £8 handling fee by the post office!

    I didn't pay a lot more for 1000 1 grain tablets of Thiroid from Thailand & no VAT & rip-off handling charge from PO.I'll have to give them another go perhaps.

    Because of this forum & the quality of T3 & NDT available online & their purchasing set-ups,I have been able to feel confident enough to reject the TSH/thyroxine-only approach of the endo.Its not ideal,but I won't be held to ransom when it comes to my health.

  • A woman with cojones! Did you see the programme on TV that featured T3? Apparently, although the patent on T3 has expired, which means that by rights the generic formula is inexpensive to reproduce, the manufacturer has bought the manufacturing process - I think it's something to do with the necessary setup, which gives them licence to print money for the drug. In effect, the price hike is now into the thousands of percent - one tablet costs the NHS over £200!

    I'm going to pm you to compare sources for certain items - the last time I bought NDT online it was Thyroid-S, which didn't suit me, so I want to make sure that the supplier I'm going to use is the same one as yours!

    You are a brave woman, nevertheless, and you are lucky with your GP. Keep on keeping on!

  • Dearest Schenks I have mentioned this before, when are you going to write a book, or have you already done it?

    Probably the wrong thing to say, but I did so enjoy reading your post 😊

    You are so right, Freddie never did mince!

    I had a 'practitioner' who charged £95 for half an hour telephone consultation, but a lot of that time was spent like 'ummm', 'ahhh', repeat of earlier things mentioned, and I ended up thinking I'd paid £95 and got nothing new for it. I ditched her pretty quickly.

    Your buggy sounds particularly useful. I think I might have to get one to cope with the hordes of people who descend on my little seaside town at holiday time (like now 😣) and block the narrow pavements and saunter along with not a thought for anyone who has things to do. It will be useful to pop my little dog on my lap, honk the horn to scare the poop out of them, and drive a few minutes to the beach where we can hop off and enjoy some time in the usually quiet sand dunes.

    My friend has a mobility scooter and has one of those old fashioned honky horns with the rubber bulb you squeeze. Her dog learnt how to squeeze the bulb and sound the horn this morning - oh what fun she's going to have with that!!!

    I look forward to hearing about your hubby's hospital stay.

  • Suzy-by-the-sea! Hi there, and thanks! As for the book, the one I'm working on and almost there with might surprise you. It's an anthology of miracles ... some​funny, some not quite so. The book about my sojourn into the medical madness is part written and has somewhat more bite, as you may imagine 😀. It still surprises me that people would want to read what I write, though. So much so that my OH has started to look at how to go about getting something published because the thought of it makes me feel too panicky. Because when I get compliments about writing I think, deep down, that people are just being kind.

    I love the image of you pootling along on a buggy with a little button of a dog on your knee biting at a honky horn and scaring the bejabers out of the damn tourists! You're a character ... hmm. Yes indeed, you are a character...

    By the way, the buggy is free to hire from the local Country Park; a Tramper costs around seven grand! Can you believe that?

    Anyway, it's interesting to read how similar are our experiences - all of us. I wish my GP was as ballsy as yours, but she really is quite hysterical at all things self-medicatory. She'll have kittens again - you could have fried an egg on her head when I told her I was self-injecting vitamin B12; it was almost amusing had I not had to calm the neurotic down.

    Toot toot! 🤣

  • I too love your writing and hope you can get something published... If not, please keep posting here, it just brightens the day. We must all feel the same way about Freddy - he never minced, but strutted like a peacock... and I loved him to bits! Nobody has ever come close to the sheer talent and charisma of the man and I, for one, will never go and see a tribute band (including the one set up by Brian May and Roger Taylor - how on earth they think they can recapture the magic of Queen without Freddy or John Deacon is beyond me...) I hope your OH is well on the road to recovery and life will soon return to calmer waters, although that won't provide quite as much inspiration, perhaps... Beep Beep! 😂

  • Thank you for your encouragement, Zeph. Truly valued. I totally agree about Freddie, but we were invited by someone raising money for the local Gala (pronounced Gay-la here...) and felt we couldn't refuse, especially living in an area with such pugnacious, ignorant, tribal, disagreeable people; any hand of friendship has been gratefully accepted, but so far has always turned out to be wearing invisible barbed-wire gloves!

    Will let ya'll interested know when I've completed one of the three manuscripts I'm working on!!!

  • Love your writing. And we are practically neighbours, hello from sunny Preston!

  • Ground control to ... Why thank you. Preston, you say? Very familiar with the place - studied at UCLAN, for my sins. And we really like Avenham Park - the dogs love the place.

  • Long post! 😇 yet, I kept reading..

    Your words really cheered me up! Keep writing, you are a natural!

    Oh, yes, and I'm on your side.

    Hey, I wouldn't want to hack you off! Lol.

    Good luck with the book.

  • Thank you! :D

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