...wrote a piece this week which is behind a paywall. He'd need to be behind a much sturdier wall if I knew where he lived; I'm tired of the hate...but you can get the gist of his deliberations by reading the Grauniad's rebuttal here theguardian.com/commentisfr...
which I'm posting because ME/CFS/Fibromyalgia is not only newfangled. It is terminology which never existed before NDT was swapped for levo. If I was still consulting my GP about hypothyroid symptoms I have little doubt I'd end up with this diagnosis.
I might like a blue badge so I don't have so far to walk for a trolley (my saviours at the supermarket!) but I refuse to be labelled by this posturing tw@t. That he has such a broadly heard soap box ( he writes for the currant bun, also...) may be a symbol of our right to free speech in the UK but it's beyond the pale IMO.
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So easy to verbally villify the sick - whether formally diagnosed with ME, those with thyroid issues, or the many with something that has not yet been identified. Most especially, those who are suffering in ways that make it difficult or impossible for them to fight back.
As a society we read about minorities all the time and have to accept their differences . Its what makes us civilised.
However, over and over again I have come across this attitude about illness . Its as if we just tried harder all would be well !
I come across it often and have seen it aimed at others with all sorts of diagnosis . Not everyone are so unkind and for me its why I need to come to this forum for a sense of support ,
It still amazes me, with people who are incredibly anti-racist, anti-homophobic, feminist, etc will still be hugely able-ist and say terrible things about laziness, people who aren't able to do things, etc.
Rights for sick and disabled people are light years behind those for other minority and vulnerable folks. It's just not on the table for discussion yet
Thank goodness for The Guardian! People with ME/CFS have been targeted for years and the fact that such a 'journalist' is given free rein by a newspaper that should know better is heinous. Let's hope that The Guardian's rebuttal goes viral, though the very people who should be reading it will be far too mired in their own anti-ME/anti-disability hatred to notice or care. And I doubt very much that Rod Liddle would care a dot or tittle.
I have seen his TV documentaries, read a couple of his articles (I think he actually wrote for The Guardian at one point) and watched him on Question Time and don't know how he possibly garners any respect from anyone, to be honest.
Such a good post! I think I’m on the verge of being labelled and it’s Terrifying! I actually don’t believe in Fibro or CF as ‘illnesses’ I think they are very real but they’re linked with the thyroid and they’re ‘curable’ Before my GP eventually referred me to an endo she was throwing these terms and ‘menopause’ around. I kept saying ‘that’s not me’ eventually she threw her hands in the air and said ‘I don’t know what to do with you’. I cried and sighed with relief when she said she’d refer me. How strange to think I thought I knew so much and an endo would ‘save me’. That was 4mths ago before my house became my prison and I’m so low that I don’t really care any more.
Yes, ME/CFS and Fibro are indeed linked with thyroid, but also so much more, as identified by Dr Sarah Myhill and others who see ME/CFS as mainly mitochondrial dysfunction. Do feel free to PM me if you're not aware of these developments.
I have heard this too AmandaK. In fact my practitioner believes CFS & fibromyalgia are caused by weak mitochondrial function caused by the body being over run by pathogens like viruses (Eg EBV) Candida & Lyme disease.
Thyroid disorder is also mitochondrial dysfunction, it's just not often talked about in those terms. Energy production happens in the mitochondria, and T3 is one of the chemicals needed to accomplish it, alongside more well known things like oxygen and sugar.
I'd be interested to hear your summary of the latest thoughts on ME/CFS. I find it very overwhelming trying to get a handle on things following the forums.
So sorry, have only just seen your post. I tend to follow Dr Myhill when it comes to all things CFS/ME and its multifactorial systemic issues, and my naturopath also adheres to this protocol although he disagrees with with the term ME, preferring CFS. There are so many similarities to hypothyroidism, but usually those with ME have within-range TFTs so it goes undetected. My last results (obtained privately in 2017) showed low-in-range FT4 and FT3 and mid-range TSH, so of course I would fall through the NHS net. I need to have a repeat test to see if anything has changed. I also have problems clearing toxins and possible polymorphism in the MnSod gene, which might explain some of this (if I could fully understand it!). Not sure if that answers your question sufficiently. BTW the ME Association is funding a new research project to look at mitochondrial function more closely. The Medical Research Council will be one of the research teams involved.
These results sound very much like you are hypothyroid. Although you're right it's a very long way away from what the NHS would diagnose People are commonly left suffering for many years
In interpreting your own results, a person with a healthy thyroid will have a TSH towards the bottom of the range, between about 0.8 and 1.8. Once you get as high as about 2.5 it's pretty clear that a healthy person wouldn't have that number.
For freeT4 and freeT3 these are normal curves, so the average healthy person will be right in the middle. The further out from that and towards the bottom of the range, the more unlikely there is a healthy thyroid. By the time it touches the bottom of the range most people will be very ill.
If you're borderline for a pattern out of the ideal, you really need to see a freeT3 and Hashimotos antibody test (both thyroid peroxisase and thyroglobulin antibodies). FreeT3 is the number that's closest to symptoms in the more unusual thyroid conditions, and a single positive antibody test shows you have autoimmune thyroid disease - by far the most common form.
Unfortunately NHS screening picks up only the most straightforward and common thyroid conditions, and even then people can be badly mishandled
Thank you SilverAvocado - I'll post results of the new test when I have them and will ensure the test includes the thyroid peroxisase and thyroglobulin antibodies. The actual 2017 results were: TSH: 1.310 mIU/L (0.270 - 4.200); FT3: 3.86 pmol/L (3.74 - 6.11); FT4: 14.9 pmol/L (11.5 - 19.6), so a little puzzling.
FreeT3 is very low, freeT4 well under half way through the range and TSH completely 'normal' for a healthy thyroid.
This appears to be Central ( sometimes called Secondary, but can also be Tertiary) hypothyroid. This is quite a bit less common than Primary hypothyroid caused by the deterioration of the gland itself, and the NHS is notoriously bad at picking it up Central hypo is caused by the pituitary gland not producing enough TSH, which can be caused by a problem in the pituitary itself or in the hypothalamus which produces TRH to stimulate the pituitary.
The way you can see this in your results is with that low freeT3 your body should be crying out to your thyroid to produce more hormone. TSH (thyroid stimulating hormone) is the signal your body sends to tell the thyroid to make more. But in your case the TSH is completely unresponsive, it's stuck at a level we'd expect if your thyroid hormone looked fine.
What to do with that information is a bit more of a puzzle, as many doctors are clueless about thyroid, you'll almost certainly need to see an endocrinologist to get diagnosed. It might be worth making a post about how to persuade your GP to refer you, as I am not very good on guidelines and printouts to take in. I believe a lot of the NICE guidelines don't specifically mention how to diagnose Central, just vague mutterings that it can exist. You definitely want to get that diagnosis and get a full examination, though, because if you have a pituitary problem it may be affecting other hormones, not just thyroid.
Gee whizz! Let's see the what emerges from the next results first - though I can see a GP may disregard (so yes, will take advice as you suggest) and I'm not sure an endo would be particularly interested as all are in range, but you never know. Sorry to have hijacked this post - wasn't my intention!
It will be worth it if you figure out some answers. It makes me sad to hear you've had this set of results for years without a diagnosis
I've had a very brief search, and don't think it's particularly common to have an under range freeT3 with central hypothyroid. These blood tests are really much more tailored towards detecting Primary hypothyroid or monitoring those on Levothyroxine. They're poor at identifying Central hypothyroid
If you've got symptoms you will feel loads better once you get on thyroid hormone replacement. The goal of treatment is to get freeT3 close to the top. I think the hardest bit will be getting a diagnosis, as you may have a fight on your hands. But don't be too pessimistic, it's really all about the luck of the draw for getting a knowledgeable doctor. You may be lucky and find one easily.
Rod Liddle is a complete A--hole we all know it. It's a pity he doesn't know it too.
I agree. It's so bizarre that it's hard to know what to say.
It reminds me of when I was sent to see a Talking Therapies person about a physical condition (which she'd never heard of, knew nothing about, and she didn't even deal with people with pain conditions usually). She asked: When you had these illnesses as a child, did it mean that you got a lot of attention?
A hypnotherapist also asked if I could be "doing it for attention."
Sorry, that was a bit of a tangent, but this attitude is so common.
I've also experienced this problem, of counsellors and therapists just not understanding disability and illness.
Because I've been very ill and bed bound a lot of the time I thought talking therapies might help me, and did the rounds of all the counsellors I could get. But I gave up this time last year because, even though I talked to around 8 different people, not one of them could get their head round what it meant not to be able to move around and do what you want.
For quotations, one I had from perhaps the best of the therapists, paraphrased: "Medicine and logic tells us that without a thyroid your body can't make any thyroxine, but doctors don't know everything "
I can see this is the kind of thing you say to people who are struggling with addiction or dealing with childhood abuse or maybe even who have a mental or learning disability. But it makes no sense for a physical illness and is just a stupid thing to say.
I haven't yet unearthed Professor R Liddle's list of scientific publications, nor have I found where he got his scientific degree or what university he lectures at. It's a mystery. I think it may be the University of Common Sense (UCS) which is well known for harbouring people with little if any. A tub thumper I think who does it deliberately to anger people.
We had a person like that here in the US and she enjoyed great career success spewing artful venom and people who couldn’t defend themselves. She was called “Doctor” but her university training was in Physical Education” — how to teach sports to children. She missed the part about good sportsmanship, apparently. Sounds like this bloke has the same mental and ethical handicap.
I saw an immunologist a year before I was diagnosed by the endo. I had all my historic thyroid test printouts with me, showing low function for years. He looked at them and said that my thyroid hormones were low and thyroid was going to eventually fail. He took blood tests incl. TPO and ANA but said that he ‘knew what was wrong with me’ and told me it was CFS and asked if I found him myself as he’s involved in CFS research at the Notts Uni (I didn’t know of CFS or him at all). He asked if anything happened in my life and when I denied he said looking me in the eye ‘there’s something you’re not telling me’ as if I was hiding something [having researched CFS I now know what he was after is that the psychological view of CFS assumes child trauma, like abuse, as the trigger]. He went on to recommend CBT to deal with it and handed me details of a therapist with the same surname and living in the same village as him (no comment!). He then sent a letter to my GP showing my test results (low ft4, high TPO and high ANA) and no mention of the thyroid but suggested CFS.
Oh your response did make me laugh 😂 My ft4 was 13 (12-22) but my thyroid function was ‘normal’ despite having highly positive TPO. Got to laugh really!!
Perhaps it would be divine justice if this so called expert were to suffer one of these conditions himself! Then he would know just how difficult it is to live with, without others telling us it’s all in the mind.
My immediate emotional response to people like him generally goes something like "slit his throat, rip out his thyroid and leave him without meds for long enough that he experiences a good dollop of hypothyroidism. I bet he'll revise his thinking after that."
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Interesting article in today's Sunday Times ...
"THE MISINTERPRETATION OF THYROID FUNCTION TEST RESULTS IS THE BIGGEST "FAUX PAS" IN MEDICAL HISTORY" - YouTube 
Has anyones Gp over ruled their opticians referral ?
Fine needle aspiration 🤔
