"No Surprises" by Radiohead seems to encapsulate this blog post you lucky people!
A heart that's full up like a landfill
A job that slowly kills you
Bruises that won't heal
You look so tired and unhappy
Bring down the government
They don't, they don't speak for us
I'll take a quiet life
A handshake of carbon monoxide
No alarms and no surprises
No alarms and no surprises
No alarms and no surprises
Silent, silent
This is my final fit, my final bellyache with
No alarms and no surprises
No alarms and no surprises
No alarms and no surprises please
Such a pretty house, such a pretty garden
No alarms and no surprises (let me out of here)
No alarms and no surprises (let me out of here)
No alarms and no surprises please (let me out of here)
No?
This could all change if proposed NHS reforms are implemented and GPs
A job that slowly kills you
Bruises that won't heal
You look so tired and unhappy
Bring down the government
They don't, they don't speak for us
I'll take a quiet life
A handshake of carbon monoxide
No alarms and no surprises
No alarms and no surprises
No alarms and no surprises
Silent, silent
This is my final fit, my final bellyache with
No alarms and no surprises
No alarms and no surprises
No alarms and no surprises please
Such a pretty house, such a pretty garden
No alarms and no surprises (let me out of here)
No alarms and no surprises (let me out of here)
No alarms and no surprises please (let me out of here)
This blog post is a continuation from the events outlined in my previous post I Should Have Known....
As soon as I got home from seeing the Endocrinologist I made an appointment to see my Doctor.
I wanted to discuss, as a matter of urgency, the whole Neurologist angle. It transpired that there really were....
No Surprises.
I dove right in and asked about the letter from the Endocrinologist that was sent after my April appointment that had suggested I be referred to a Neurologist.
To which my Doctor replied, verbatim; "we thought we would wait until you next came in to discuss it".
No Surprises.
Anyway, I thought.... we????
What, like the fucking Royal we?!?!
Nevermind, it was obvious that my Doctor did not feel this was urgent enough to interrupt my suffering!
No Surprises.
What followed was another example of, well, you work it out....
My Doctor had already received a letter from the Endocrinologist providing an update from my appointment only two days before.
Fair play Endo., points for being prompt in providing details of your incompetence.
The Endocrinologist now wants to refer me to a Rheumatologist!
A Rheumatologist!!!!.... I shit you not!
Have you heard the one about the Endocrinologist, the Neurologist and the Rheumatologist?
No?
They walk into a Gynaecologist's office.... who says.... "what are you cunts doing here?!"
No?.... Not quite?.... There is a joke in there somewhere, I know it!
Who knows, the Endocrinologist is likely to refer me to a Gynaecologist next! *winks*
No Surprises.
Back to my Doctor's appointment. He said; "well the Endocrinologist doesn't think it's your thyroid".
No shit Sherlock!
No Surprises.
I then proceeded to run through my Endocrinologist's appointment from my point of view.
One area of concern is my high blood pressure. Every time it is taken it is high. My Doctor said that although not ideal it does not require medicating and is not a priority at the moment. I asked if I should be concerned and my Doctor said no.
Every time I go to the hospital a nurse weighs me, and every time I am heavier than before!
No Surprises.
It sucks!.... I am now 135kg!.... don't even go there!
I am confident that when my Hypothyroidism is being treated effectively these two areas of concern will be improved upon with my continued discipline and exercise!
It's the simple things I miss the most.... like being able to exercise without it taking weeks to recover.... after a few years it puts you off even trying.... believe me!
I disgust myself at times!
My line in the sand always used to be.... keep my weight below 100kg.... now?.... don't make me laugh!
The weight gain is SO cruel.... huffing, puffing, sweating.... all the while bloating, retaining(?), constipating....
No Surprises
Did I mention?.... I disgust myself at times!
No Surprises.
With the hors d'oeuvres (as Del Boy would say! *winks*) out of the way I moved in and began my sales pitch for Natural Desiccated Thyroid (NDT).
I struggle to differentiate confidence from arrogance.... I know.... what gives?
Anyway, I nailed the sales pitch for NDT as best I could in the circumstances.... yay!
I hit all my marks....
- why a Reverse T3 test would prove if the T3 my body is producing is pooling in it's inactive form in my bloodstream!
- how I had been a good boy and done it the NHS way for eight years despite feeling very poorly!
- how the Endocrinologist had reneged on an agreement to prescribe NDT if there was no improvement in my symptoms!
- how I had informed myself of the facts. And that NDT can be prescribed on the NHS!
I had taken notes with me that detailed where I had obtained my information from regarding prescribing NDT.
I had also included my proposed timetable for the transition from synthetic T4 (levothyroxine) to natural T4/T3 combined therapy (NDT).
My Doctor could see I had brought my A-game with me and was not going to be fobbed of no more!
NO MORE!!!!
A little background for those of you not familiar with the healthcare system in the UK....
Healthcare is provided free at the point of delivery by the NHS (National Health Service) which is funded by the taxpayer.
Private healthcare is available to those who can afford it.
No Surprises.
Currently the purse-strings of my Doctor are controlled by the local PCT (Primary Care Trust).
This arrangement has become known as the post-code lottery. Depending on where you live the medication available to you may differ. This has received widespread media coverage whenever the media feel there has been an injustice. And there have been some truly heart-breaking stories.
This could all change if proposed NHS reforms are implemented and GPs
Anyway, my Doctor asked if I would leave my notes with him, and told me he will write to the PCT to see if they will fund NDT!
This is a result!
A necessary step in the right direction.
I am nothing if not realistic.... so I am not getting my hopes up.
No Surprises.
The ace up my sleeve is the one where my Doctor can still prescribe NDT without funding from the PCT if I am able to pay for the medication. Approximate cost £50 for three months in the first instance and then once a stable dose is reached the cost should be about £25 every three months (because, for example, instead of separate half grain and one grain I can replace them with one and a half grain).
In all the excitement I did not come away with copies of the letters from my Endocrinologist for the April and June appointments but this can be easily rectified.
I have asked for a copy of my Doctors letter to the PCT and their written response.
If at the end of this part of my journey towards improved health I am refused treatment with NDT I want it categorically in writing.
I have noticed that if you keep requesting copies of letters and decisions in writing it makes health professionals uncomfortable.... no bad thing after what I have been through! *winks*
No Surprises.
My Doctor has asked me to give it three weeks for the machinations of bureaucracy to move. The similarities between this situation and my bowels has not gone unnoticed!
No Surprises.
Still no "movement" on a RT3 blood test.... if it becomes necessary I will get this refusal in writing too!
No Surprises.
The disgust I felt after my appointment at the Endocrinologist served to fire up my adrenals.... I think.... as I was able to end up having a productive week!
I am feeling it now though.... a #zombieday has turned into a #zombieweekend.... I've been here before so it holds no fear for me anymore....
No Surprises.
Remember.... for as long as we have hope we have a chance.
nb. I have re-read this post again the morning after the night before. I can tell that it was written under the influence of brain-fog. Can you? I will leave it as is, even though I'm not too happy with how it flows.
nb. I have re-read this post again the morning after the night before. I can tell that it was written under the influence of brain-fog. Can you? I will leave it as is, even though I'm not too happy with how it flows.
Hi Robert. i'm in australia, but originally from the UK. been battling fatigue and a range of other issues for the last number of years but the last 2 especially. was always told the same thing. 'you're not hypothyroid as your tsh is within range'.
ReplyDeleteit took a chiropractor and a naturopath to get me to check my body temp every morning and discover it is low, which as you probably know is indicative of hypo. so both the chiro and naturopath carried out some further tests (not blood tests) and decided yes i am more than likely hypo. luckily my naturopath was able to send me to a GP who prescribed NDT with basically no questions asked. He was excellent. even gave me his mobile number so i can just ring up any time i need a new prescription and he said he would fax it over to the compounding chemists for me and everything. The compounding chemist have told me they can ship my NDT to me anywhere, even world wide. it seems they are well aware of the difficult situation folks with hypothyroidism are in and are prepared to go to great lengths to help, and already ship to patients who have since moved to the UK.
i have to say it's early days but it seems to be working so far and i'm feeling better, much better. if you are having trouble finding a doctor who will prescribe NDT i was told the best thing to do is to ring and ask a compounding chemist (preferably local to you if possible) to recommend a doctor who is open minded and not against prescribing NDT. I have just moved from Sydney to Melbourne and tried it to see if it works and it does. I phoned a compounding chemist and they gave me numbers of 3 doctors. The one they especially recommended can't see me for 3 months as he is booked out til then. You may have to wait a while to get to see the better or more well known doctors but it should be worth the wait if they know what they are doing.
Also have you seen the website http://www.stopthethyroidmadness.com/ and the book that accompanies it? From what i have researched it is the best and most in depth guide to hypothyroidism. I have so far made it my bible.
I hope some of this helps. so far i am making good progress but if i'd left it up to my regular doctors to help me i'd still be in a very bad mess.