Tag Archives: thyroid

Budget Healthcare

I know that we are supremely blessed out of all the world to have a publicly funded healthcare system. I am extremely grateful for it. In the case of my son, it saved his life… but only after almost taking it through misdiagnosis and negligence (see the page above on Type 1 Diabetes).

I don’t know whether it is the same across the board or whether my family and I have been particularly unlucky with bad and lazy doctors, but I could recount a catalogue of poor care and misdiagnosis. In fact, I think I will (indulge me):

  • When I was 12, I was knocked off my bike in a hit and run incident, causing a head injury and concussion (and actually who knows what else, as despite a litany of symptoms after this I have had no follow-up?) There was no room on the children’s ward, so I was placed in a single room off the men’s geriatric ward. I was allowed no visitors except at the ward’s very limited visiting times. I didn’t even receive nursing from the children’s ward. So to put it mildly, a horrible experience all round. (Incidentally, the police never investigated the hit and run either, so some guy who probably thought he killed a child – he didn’t stop to check – was just left to carry on with his life without so much as a caution.)
  • When I was 17, I went to the doctor reporting abdominal pain and a year of missed periods. This doctor had already missed my brother’s Crohn’s for more than ten years so I had armed myself with information. I suggested that I thought I might have ovarian cysts, so she sent me for a scan which confirmed my diagnosis, but I was told they were best left alone. I was diagnosed with Poly-cystic ovary syndrome (PCOS) but not told. I did not find out about this diagnosis until another doctor happened to find it in my notes 25 years later, despite having multiple miscarriages in the intervening period.
  • When I was 22, I had a debilitating throat infection with swollen glands which kept me off work for more than two weeks. The doctor refused to visit me. When I finally was well enough to go and see her, she told me it was ‘probably’ glandular fever but refused to write me a sick note for work. (Incidentally, I don’t think this was the first incidence of this illness, and I suspect it goes back to early childhood.) I remember getting in a lot of trouble for that!
  • In 2003 right after the birth of my fourth child, I seemed to have a recurrence of this illness which absolutely knocked me down with widespread pain, digestive troubles, and a host of other unexplained and apparently neurological symptoms. I can’t be sure whether or not it was the same thing or something different, as I was never tested for EBV (The Epstein-Barr Virus, which is the virus responsible for both glandular fever and tonsilitis.) I went to the doctor multiple times, only to be told that I was depressed! (what?!) Later, this bizarre misdiagnosis changed to indigestion (what?!) and IBS caused by stress (what?!) Lastly, she suggested Chronic Fatigue  (which seems quite bizarre to me as I never once mentioned fatigue as one of my core symptoms although it was present, it always seemed to me to be a secondary result of the illness, as is depression) but then told me she didn’t believe in it anyway and refused to diagnose it!! (what?!) Finally, after 13 years and several different opinions from different doctors, I finally got a diagnosis of so-called ‘ME/CFS’. A step in the right direction perhaps but not much help, and really on no basis at all.

Jackie commented yesterday on one of my previous posts on ME, drawing my attention  to some articles explaining the very fundamental differences between ME and CFS, and I will share them below. As I am sure I have mentioned before, the NHS has ignored the WHO’s determination that ME is a neurological illness, and instead has chosen – under the direction of a group of now largely discredited psychiatrists who like to believe that it is an imagined illness – to use their own ‘NICE’ guidelines which conflate ME with ‘Chronic Fatigue’.

CFS and ME Comparison Chart

CFS is Always a Misdiagnosis

ME v CFS – They’re Not the Same!

Reading through these important articles (and I recommend the Hummingbird Foundation as one of the few places where you will find reliable information about ME – see my health links to the right), I am struck by how easy it would have been to have sent me for a brain scan when I first got ill. Either it would have shown something and I could have received a correct diagnosis immediately, or it would have been clear that it wasn’t ME and further investigation needed to be undertaken to determine the true cause of the illness.

But the NHS does not routinely offer brain scans to people who present with ME-like symptoms. (In fact, I am still pushing for a scan relating to my head injury more than 30 years later because I strongly suspect pituitary damage, but I might as well be banging that head up against a big brick wall!)

To save a bit of money, the NHS lumps genuine ME together with unexplained CFS and recommends only a treatment which can severely damage people with genuine ME (although this may be alright for people with chronic fatigue that isn’t ME), with no regard whatsoever to the years of suffering and lives wasted. The same is true of people with clear Thyroid conversion issues, but whose TSH appears normal. (More to say on that another time.)

ME/ CFS/ Fibromyalgia (which may or may not be the same illness) used to be diagnosed by a process of exclusion. But when I went to the Rheumatologist and received the dubious new diagnosis of Fibromyalgia, he told me that this is no longer the policy in the NHS, but rather, a (mis)diagnosis is offered on the basis of what it ‘appears to be’. This is truly scandalous. So I was not tested for Rheumatoid Arthritis, Sjogren’s or Lupus, despite having an overwhelming list of symptoms that would warrant such testing.

When I went last week to my first meeting of the local Fibromyalgia support group, I was surprised to find a large number with multiple diagnoses including three with MS, and lo! When I looked up co-morbidities of Myalgia Encephalomyelitis, MS was listed as commonly occurring together with ME. But this is important – if you were once diagnosed with CFS but then later received a diagnosis of MS, CFS was a false diagnosis because the nature of CFS is unexplained fatigue – if it goes on to be explained, it ceases to be CFS. But if you had a diagnosis of ME and then later received a diagnosis of MS, they could be legitimately occurring together.

But this can only be determined by proper testing, which is not generally available on the NHS. The only choices available to an NHS patient are to fight and battle and shout and scream in the hope of getting the help you need (and risk getting labeled as a trouble-maker, or worse) or to get private testing done. Most people of course do not have that option open to them.

When my Dad was rushed into hospital by ambulance with heart failure, the front-line care appeared absolutely top-notch. We were all very impressed. But after being bullied into having an operation that he wasn’t strong enough to survive (for what nefarious reason I cannot determine), and having had a stroke on the table which caused a severe personality change, depression and emotional lability which made his last year hell, he was never offered any kind of aftercare. Physiotherapy was not even suggested until the week before he died, when of course it was far too late. Front-line care may be impressive, but the reality for the day-to-day care of living with chronic illness can only be described as poor in the extreme.

I don’t knock the NHS because I hate it. I love it, and I want it to continue and to improve, and I can only think that it has been mismanaged the way that it has for the express purpose of dismantling it and selling it off. I wish I knew what could be done to reverse the trend. But I think that patients can and must speak up when they receive poor care and demand better.

Whatever is good

I decided not to make any New Year’s Resolutions. Inevitably, I do them from a place of being dissatisfied with life and with myself, as though it was all my fault or responsibility, and as though a simple decision to ‘be better’ could make it all come right, but if there is one thing I have learned in the last year it is that most of the things I would like to change are outside of my control.

perfect

One of the things I really thought I could control was my weight, but even there it appears I was mistaken. Despite my best efforts, on every type of diet I tried, I have been unable to lose weight and I am convinced now that it is due to Thyroid and general endocrine dysfunction. My metabolism is just shot.

So it’s not my fault.

I feel pretty crap about it but I am done with all the self-loathing. I am not in this position because I am greedy or lazy, or stupid, but because I’m ill and that’s not my fault either. I didn’t choose this. Ditto all the rest of the crappy circumstances.

its-not-my-fault.0

I will do what I can to make things better as and when I can, but I can’t do better than my best and I need to stop thinking that I should.

I do know myself though. I know that, no matter what I tell myself, I will feel disappointed when Monday rolls around I will wonder why it’s not better than it is.

I think what I really need to do is to emphasise the positive things that I am already doing – looking for the good, the beautiful, the worthy in all the dark and hard and miserable, those “treasures in the darkness” I keep hearing about. If I can’t find anything else to be grateful for, I can always list the 5 favourite people in my life. But there is usually a ray of stray sunshine even on the darkest day.

I have seen the suggestion to pick a word for the year as an alternative to New Year’s Resolutions a few times over the last couple of years or so, and I hadn’t done it before because I didn’t feel very inspired, but this year somehow I do. And so this is my one word for 2016: Treasure.

Hidden-Treasure

Treasure seemed appropriate because it’s both a noun and a verb. While I am searching for treasure, good, beauty in everything, I am also learning to treasure the good things I have in my life already. My husband, my children, living in Cornwall, the ocean. There’s lots to be grateful for.

treasureheart

I have made lists – things I would like to write about, places I would like to go, things I would like to do, books I would like to read, ad nauseum. But they’re just wish lists, not ‘to do’ lists. If I manage to do any of the things on my lists, it will be a bonus.

This isn’t me being depressed or pessimistic. This is about me being realistic rather than setting myself up for disappointment. Based on experience, grandiose New Year Resolutions (get healthy/ get thin/ exercise/ whatever) just don’t work.

gratitude-quotes-finding-the-good-quotes

But regardless, I love planning. If I could afford to be, I would be a total stationery addict, and even as it is I have a bunch of diaries, notebooks, filofaxes and planners on the go. I can always find a use for another one.

And so, despite everything I have said so far, I have ordered another new planner for 2016 – the Jump! Parent Planner from Jump! Mag, which is designed to help you plan specific, reachable goals. I won’t know what it’s like until it arrives (next week now) but I won’t be bothered if it’s not helpful. I’ll just enjoy doodling and colouring in it. I’ll let you know.

It probably won’t be the last planner/ notebook/ diary/ stationery I get either, since if there’s one thing I know makes me happy, it’s pretty paper! Shallow, perhaps, but there it is. I know what I like!

What about you? New year resolutions? A One Word? What makes you happy? where/ what is your treasure?

LLAP

Felix qui potuit rerum cognoscere causas

The fact that I am up (still up) at 4:25 am, playing with my blog and updating my Goodreads/ Shelfari/ LibraryThing accounts worries me somewhat. Yes, I’m tired, but I’m also so horribly buzzy that I know there is very little point in me going to lie down, because I would not be likely to sleep. In fact, sleep has been elusive for some time.

Adrenal rushes have always been part of my illness. During my succession of dreadful GPs I have been told that a) I was imagining them, b) that my adrenaline and cortisol appears normal and c) I must have an anxiety disorder. Well pah. I lost faith in the NHS a long time ago. I know that I have anxiety issues, but to be fair they didn’t start until after I became ill.

Adrenal fatigue/ dysfunction is a known symptom of ME as part of the overall autonomic nervous system dysfunction, but since the NHS are ill-equipped to correctly test for or treat such things, their default position is to insult us. Enough of that. When I can afford to, I will be getting some properly reliable tests done privately. What I will do after that is anyone’s guess. I’m not likely to ever be able to afford private care beyond the testing, so once I actually know what I am really dealing with, I will investigate affordable alternatives.

Anyway. What I wanted to mention is that this period of insomnia and frenetic activity is somewhat reminiscent of a Bi-polar high, or the ‘manic’ part of what used to be called Manic Depression. I do have Bi-polar tendencies, I am aware of this. My mother has Bi-polar Disorder, and although I don’t believe for a moment that I have Bi-polar myself, I do think I am slightly genetically vulnerable to changes in brain chemistry. I have had these occasional, mild highs before. Primarily, I have had them when taking a new medication – when I was on Amlopodine for high blood pressure, I experienced horrible racing thoughts and really unpleasant ‘mixed states’ – a feeling of intense depression and mania at the same time. The other thing that threw me for a total loop was St. John’s Wort, which I took for post-natal depression many years ago.

Thankfully I am not experiencing any of that this time. But I do feel very, very slightly ‘high’. And although there is a very crucial campaign by people with ME to ensure that the illness is not confused with mental illness (which I totally support, as I am quite, quite sure that the depression that comes with ME is not a cause or an explanation but rather a co-morbid result of suffering chronically and being treated so appallingly badly by the NHS, the media and society in general), this ‘high’ does strengthen my conviction that my particular illness has dysfunctional thyroid as an integral component, since hypo- and hyper- thyroid states can affect the brain, and in fact it is not unknown for people with dysfunctional thyroid (especially Hashimoto’s Thyroditis, which can swing from high to low) to be mis-diagnosed with Bipolar.

Yes, you have probably guessed it, I have been taking a supplement designed to help the Thyroid for the last week or so. I strongly suspect a causal link. Again, when I can afford to, I will be getting a complete thyroid panel done privately. But I’m feeling good (even allowing for the possible ‘mania’) about the feeling that I might be on the right track.

As you may have seen me mention, I posted in a very dark moment that if I didn’t get well in 2016, I would throw in the towel. I’m sure I wouldn’t. But I have a good feeling that 2016 might be the year for me. If I can get well – even by a small margin – my quality of life would improve beyond all recognition; I would be able to get out, clean my house, oh I don’t know – perhaps begin to make friends and build that ‘social network’ that 2015’s horoscope promised so faithlessly.

This is what I would like for 2016: glowing health, all our financial difficulties are over, find a better house, success in every area, and everything I touch turns to gold. Blessed beyond all imagining. “A good measure, pressed down, shaken together and running over, will be poured into your lap.” Yep. That’s what I’m looking for ideally.

And if it doesn’t happen quite like I want it to, I will try to find joy in all things, beauty and treasure in the darkness.

See? This is my happy place now.

Fob-off Diagnosis (again)

About a month ago I decided to move GP surgeries to the other one in town, because after three years of being told – without any adequate process of exclusion – that I have ME/cfs with Fibromyalgia (although I have never seen a rheumatologist to confirm that diagnosis) and that nothing could be done for me, I had decided that enough was enough.

The first GP I saw at the new surgery seemed very young and inexperienced, and in fact he had never heard of one of my diagnoses – PCOS – (Poly-cystic Ovary Sydrome), although it is a very common condition, and he actually had to look it up on his little screen!

I discussed with him that ME is an illness that should only ever be diagnosed through a process of exclusion and I believed that had not taken place. I suggested a number of things I wanted testing, including pernicious anaemia and hashimoto’s thyroiditis, both of which run in the family. He stated that “everybody thinks it’s thyroid, and it never is”, which did not inspire me with confidence at all.

The next GP I saw was a very popular lady, and for good reason. I have never encountered such a friendly, compassionate doctor who was so willing to co-operate. She immediately referred me to Neurology to rule out MS and to check for possible pituitary damage after a head injury some years ago, and to Rheumatology to rule out Rheumatoid Arthritis and Sjogren’s, and with the promise of more referrals to come. Sadly, this wonderful doctor went on maternity leave the next week, so I will not see her again for a year or more.

Today I saw a third GP, who I assume was a locum filling in for the maternity leave. I had prepared a very thorough and detailed letter explaining my case and some of the things I wanted testing and why. This GP read the letter and immediately picked it apart dismissively, becoming increasingly rude and patronising, telling me that I shouldn’t be resistant to the ME & Fibro diagnosis, and that I appeared to be “angry for some reason”. It felt as though I had gone back ten years. I left her office in tears.

I am actually too exhausted from crying to go into detail about what she said and how upset and angry I am. But I can tell you that I feel more desperate than I have ever felt.

The previous blood tests for TSH (computer) says “no” so without an intelligent operator, I am faced with a brick wall. She actually said to me “some conditions can’t be helped“.

How is that possibly acceptable?

And I really just don’t know where to turn.

ME: An Alternative View

The following website belongs to a friend of mine, who has an alternative and controversial view on what ME really is:

http://aboutmy.me/

I think that in my case, this probably applies, and I am working on the basis that thyroid and adrenal issues have not been adequately or thoroughly investigated by my doctors.

But I think that the thyroid and adrenal connection is only one part of the puzzle – it doesn’t fit the profiles of the outbreaks of mass ME such as the Royal Free case, in which dozens of patients and nurses came down with the same illness.

But it is definitely an issue that must be properly investigated before ME can be legitimately diagnosed.