'Good' Blood Test Results should not be sought at the expense of patient health. In other words it is not ok to keep a patient ill to keep the blood results 'looking' good.
I have found my sweetspot and the results might make some in the medical profession wince. Tough, this is where wellness resides for me. Only a fool would think it is appropriate to prescribe a half life to a patient in order to keep all parameters comfortably in range.
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Totally agree! You would think it was self-evident, wouldn't you.
Yes you would but we are living in clown world
I'm assuming the green rows are results you feel good with. But what do the yellow rows signify?
Yes green for ‘GO’ yellow ‘oh no’ 😱
When I was at my worst - brain not working, heartburn so bad I had to sit up to go to sleep, constipation is so bad I felt like a brick works, depression, anxiety, the works! This was when my husband was pretty much looking after me. So the only thing I did daily was get washed and dressed and that took me two hours. Just about managed to get up at midday was on the sofa from 3 pm back in bed by 9 pm.
1,000,000 miles away from that now feeling so much better
And this research paper agrees with your experience (and many other members on here)
T4 therapy
ncbi.nlm.nih.gov/labs/pmc/a...
In a study evaluating tissue function tests before total thyroidectomy and at 1 year postoperatively when using LT4, it was found that peripheral tissue function tests indicated mild hyperthyroidism at TSH <0.03 mU/L and mild hypothyroidism at TSH 0.3 to 5.0 mU/L; the tissues were closest to euthyroidism at TSH 0.03 to 0.3 mU/L [48]. A normal serum TSH level consequently does not necessarily indicate a euthyroid state at the tissue level.
And symptoms calibrate if only doctors would listen ……
Hi
Someone here (sorry can't remember their name) made an excellent point the other day, the NHS treats millions of people for depression, its a big cost, medication, counselling etc. Yet its based on symptoms only.
You don't have a blood test for depression. I've got Fibro. There's no definitive test for it. No yes or no diagnosis. Only the tender point test and lots of symptoms. Same for my dizzy problem. It doesn't show up on x rays or MRI's. I've had so many blood tests I'm now resembling a colander.
Yet not one doctor has suggested I'm imagining it or it's the menopause, at least not yet 😄. So why the fixation on blood tests only for thyroid? To the exclusion of everything else?
Someone’s egos set this in stone many years ago and don’t forget this is a mainly female problem statistically - low priority.
We all have an end point and when the person/s who’s flawed science set this whole debacle off years ago finally drop off the twig things start to change.
Well, I never really liked clowns anyway and In order to stay ' this well ' you will likely need to distance yourself from the circus.
Brilliant! Yes I will use the blessed telecon which I have totally turned to my advantage 😊👍
Doctors, like the clown from "IT", but without the balloons.
I can’t watch horror films - but I know the reference. I like to watch lighthearted funny or science engineering type programming. Some stuff they pump out leaves me feeling like a bit of chewed string- can’t be bothered with that 🤣👍
I love horror but the creepy, well made kind, not slasher films. I like fantasy and sci-fi as well.
I guess so, but it's an age thing and IT means it to me - though I've always been partial to a balloon or two !!
Guffaw!
Rage, rage against the dying of the light! My recent bloods were not good so my GP has contacted me suggesting a dose increase. Hoorah! I’m educating them one visit at a time 😆
Keep going!
but he’s still got to get to the next level looking at you AND the bloods understanding your symptoms are real and calibrating the test to your wellness. These tests are limited in their scope and if doctors do not understand the inherent limitations they will still fall short.
Just because the coin fell heads up this time don’t presume you are anywhere near getting them educated yet. Be wary!
! If they say no to something I just ask the Endo (private) to write to them and then they never argue.
Your lucky you have a useful one 😂👍
Thanks for your post. My doctor was taught No.1 that a suppressed TSH indicated that the T3 was too high, No. 2 that T3 when too high could cause atrial fibrillation and increase the risk of heart attack or stroke so No. 3 medicate to keep the TSH in range.
So he was happy to keep me under medicated to keep me and (I suppose from a professional standpoint) him from physical harm. Even though I felt lousy, my work suffered and I could have lost my job.
Do no harm? What about mental or financial harm? Do not take a life. What about destroying a financial life? Or harming family life with the children growing up with a slow, sluggish depressed parent?
My basic research showed me that T4 is converted to T3 in the cells and the T3 is the active chemical. So I asked a doctor at the GP surgery “what if I have a problem converting T4 to T3? That would explain why the T4 in the blood and TSH levels are normal but I still feel unwell? He had no answer, it was outside his knowledge. Nice kind doctor though, they generally are.
I came across the matter of a genetic cause for inefficient conversion and tested privately for the DI02 mutation. Yes, I have it. Which explains a lot. I also used Monitor My Health to test for T3 and still do. My hospital won’t test for T3 - I suppose they follow the old paradigm.
In my opinion the solution includes No.1 teaching new doctors and informing existing doctors about the research and changing the paradigm, No. 2 for the NHS to procure T3 at a reasonable price (i.e. that paid by European governments, not being ripped off as they have been and are) so that it can be prescribed and No. 3 persuading NHS labs to normally include a test for T3.
Hopefully in due course the doctors will be able to prescribe based on knowledge and understanding instead of being constrained by the ignorance, stupidity and greed of others.
My results are anonymous feel free to use and Diogenes has put up numerous papers debunking the whole TSH, FT3 thing.
This is why it is so important for us all to keep reading on this forum knowledge is power especially when shared 😊👍
See link below
Totally agree these set perimeters are the Gods of the professionals if you fit into the brackets your thyroid is perfect but how come I feel like death. Back in July I was over in my T4 was well over the scale of max 22 (mine was 33.9) my T4 was 11 well over the 6.8 but I felt great normal full of energy best I’ve been in years but when I had to reduced my PTU I went down to T14.3 and T3 4.2 in 8 weeks and now feel like death. I stayed on this new dose of 200mg of proplythoiracil for 5 days before my Endo nurse rang and took 50mg off so quite possibly I went further down as my body is very receptive to medication changes. I’m glad you found the right levels for you it’s good to hear.
You have to confront them with are you treating the lab work or me? They obsess about longevity as if this the ultimate prize!They will put keeping people alive longer (in their minds ) over people having a lovely active life but perhaps missing out on a few years in old age.
Ricky Gervais summed it up brilliantly on eating and drinking- he keeps being told if you eat and drink less you will live longer but he says yes but the longer, that will come later - I will get to be in my 80’s and perhaps live to my 90’s - I don’t get to have another crack at my 20’s or30’s.
Yes I totally agree we have to stand our corner but with a befuddled brain they tie me in knots as my understanding is limited. The complexity of it is that if you are well over active in the chart is well you should be very sweaty however that is not the case with me and for the first time in my life for a couple of years I have lost the ability to sweat and having condition hyperhidrosis this is been a pure joy to me not to have hands and feet permanently wet. I know we are on a different subject but this must be something to do with my thyroid. As soon as I got down to the very low end of the T4 stat the sweating was unbelievable the tiredness was excessive my BP was raised. When I’m high and should be sweaty I’m not confused I am? I tell the professional world how I feel however they still go by what is to them the ideal and average reading. I am not in the position as you are now in which isn’t my optimum level of wellness I can only say that when I was over the levels that were ideal to them I feel at my best. If it is not safe to be on a higher reading due to strain on the heart or other issues and I live 10 years shorter but I have a better quality of life now I think I know which option I take.
The powers that be appear to sit on their high horses with their eyes and ears closed.....most likely afraid to fall off and lose face.
Their approach beggars belief
Yet, they insist on treating the patient by numbers
Most medics looking at my labs would run for the hills screaming....but I now function!Without high dose T3 I fade
My TSH and FT4 are undetectable and my T3 is in orbit.
I am forced to self medicate in order to function
And I'm clearly not alone.
GP now accepts my right to adopt Patient Autonomy and leaves me to it....but without the safety net of the NHS
I don't fit into the neat box medics imagine I should inhabit
Until they understand and acknowledge the value of good, old fashioned and reliable clinical evaluation this madness will continue.
We are not machines but we are serviced as such
We are human beings with all the variations and complexities that engenders.....and must be treated as individuals
Yet this " madhouse" is run by .....
Sorry, ranting again but, to me, this issue is like a red rag to the proverbial bull
Keep at them!!
Your right Dippy - and ace! 😊👍 you have been an inspiration to me to dig heels in and fight my corner. 😘👍
Hi
Hope you don't mind my asking but are you on Levo only or are you supplementing or using something else. I'm really pleased you've found your sweet spot😆. I'm fast coming to the conclusion that monotherapy on Levo isn't doing it for me.
I am on just Levothyroxine - now……..
Here is the thing. I realised, thanks to this forum I was not being treated correctly and relatively quickly - 6 months from official diagnosis. I believe, and it is only an hypothesis, that there is a ‘cascade effect’ within the endocrine system. We know there are complex systems of self perpetuating feedbacks. When people become hypothyroid these feedbacks start to deteriorate blood tests attempt to quantify this, symptoms exemplify this. If caught in time, the chance of a good outcome is better. The longer it is left the more complex the solution and the less certain the outcomes.
I liken it to all the pathways in the Lake District fells, kept open by use and maintained by volunteers. If the fells ceased to be walked and the maintenance ceased to be carried out then pathways would become overgrown and some lost - it might not be possible even with later intervention to recover everything that had once been.
Also now I’m on Levothyroxine, the feedback system does not have the full spectrum of thyroid hormones naturally produced. Levothyroxine is a mono therapy, so I need to consider the distinct possibility I may need T3 in the future. I’m on solid ground now but that could erode in time.
I'm now taking Thyroid S, my last NHS blood tests were very disappointing even though I'm on a good dose of Levo. Both my frees were barely in range. My vitamins and minerals were all good so I'm just not absorbing it for some reason.
I bought Thai thyroid stuff a few years ago, pre diagnosis, didn't know what I was doing with it and stuck it in the back of the cupboard. After my woeful results I added a grain to the Levo, dropped the Levo down and last week's results were the best I've ever had. In just 4 weeks my frees are now top of the range. I'm in the process of switching over to NDT now.
Do you think you will try the NHS for T3 or just self source?
Ah who knows? Depends on if and when in the future. I will only nap the next leg of the journey when I have come to the end of this one.
But I do enjoy an intellectual scrap so probably go head to head with a few folk round in the NHS first - you never know everything might have been sorted by then 😂🤣😂🤣😂🤪
Glad you feel well enough for the circus -
Challenging the Ring Master and his band simply exacerbated my symptoms so I had to step away and march to my own drum.
Charlie-Farley I always love your posts. I like how clear your mind is. I long for that myself. I am presently attempting to apply for some sort of disabled benefit. It’s a nightmare. The most frustrating part of this is that if the NHS were to just give me the correct treatment, I think this would be entirely unnecessary. I have struggled for a very long time being treated for many things I DON’T have but now I am being treated for something I DO have; they just won’t come up with the goods. I watched Lorraine Cleaver’s and Dr John Midgleys 2016 (I think) presentation to the Scottish Parliament at the weekend. They were clearly having trouble dealing with their own disbelief at the situation. Their disgust palpable. Just like us all on the forum. How on Earth is it that a very small group of individuals - never mind medics (allegedly helpers) - can wreak this amount of havoc over a pretty large group (mainly women) in our ‘free’ country? I just don’t get it. I really just don’t get it. These doctors get their positions on ‘merit’ I suppose???! It reminds me very much of the story that no-one in accountancy wants the job that puts companies into administration, so that field is wide open for the less able but ambitious bod. From what I have seen of the ‘important’ people in hypothyroid treatment, it looks like it applies here. There is probably no competition within this specialism because no-one with any real brains wants to work there. Good doctors are unable to treat patients properly within the straightjacket created by the ‘important’ doctors. Not so good doctors are there perhaps because they can’t get work/promotion elsewhere. Off course there will be some good ones in there but their hands are tied.
Which reminds me, has anyone heard of a specialist (experimental?) NHS unit I think heard is in Leicester, of a more respectful and attentive type of doctoring which deals with hypothyroidism? It seems to be interested in working with patients and helping with dosages and understanding their lives better. Listening??
Thank you arTistapple
Wow - I’d be interested in that initiative! I’m lucky to have studied environmental science. There are some overarching principles in science that have helped me apply myself to this topic, but I’m still ‘a fresher’ so to speak. However, and here is the interesting thing when I presented the GPs with written submissions (including scientific references) and my data clearly presented - I was able to get my way. But I’m absolutely convinced my relatively quick return to health is down to getting sorted quickly.
I do think it has been a key player.
I met a woman suffering from hypothyroidism at my allotment (which off course I can no longer do but luckily my husband keeps it himself now) who comes from Leicester (if I remember correctly) and her Mother who is also hypothyroid, attends this innovative clinic. Unfortunately when I met her I was already in a bad way and had no idea how the politics of hypothyroidism was going to pan out (or indeed had any awareness that there were politics within hypothyroidism) or I would have got more details! If no-one comes up with any info I will try to contact her through the allotment group.
I am paying strict attention to my advice from the forum and it is paying dividends. Unfortunately I was not diagnosed quickly and therefore there is a knock on effect to returning to health (and I am getting on a bit) I think. Your spreadsheet is very interesting. It’s very real and thank you for sharing. I was particularly interested and heartened in the T3 change. Whilst not exactly huge in magnitude (I think I have what is actually necessary to make the desired changes totally overblown in my mind) it appears presumably achievable for most of us; whether through conversion or additional T3. It is altogether very heartening to see it in black and white, yellow and green, along with your report on how you are feeling. Great stuff!
I would be very much interested to hear about this inovative clinic because as far as I know there is nobody in Leicester who really knows how to treat anything more complex than a standard textbook case even if they are very nice. I think their focus is firmly on diabetis here and I was doing my best to educate my endo on T3 and wider aspects of hypothyroidism and Hashimoto's, with limited success I'm afraid. Unless you go private there is practically a zero chance of getting T3 on NHS here and the circus reigns on. The range is king and if you don't fit within the paradigm, you are on your own.
samaja I have looked online and lo and behold it looks like something new but isn’t! It’s a bit of PR to make it sound better. It’s the same old circus then after all! Thank you for your personal knowledge and input!
Oh samaja
Ignorance- but hard for them to see - they all got taught the same stupid, by the same stupid . An echo chamber of ignorance. Echo chambers - very dangerous things all round.
Totally fascinated how you got them to go from 75 to 150. I mean most doctors would see your results (NHS test at 75) as gold.
Well I guess the gold medal is for you, for that ultimate feat.
Hi Litatamon
I turned to the logical argument that whilst I might be ‘in range’ I was still symptomatic therefore not optimal. I also pointed out there was room within the range to accommodate another dose increase AND that going by NHS guidelines of dosing 1.6 ug per kg, I should be optimal on or around 150 ug of Levothyroxine.
I used their own guidelines against them so to speak. Sad they didn’t know this - they could keep it on the back of a postcard on their desks.
Just think of all the suffering they could alleviate………
Well done I say, well done! 😀
Thank you, I think 'Spock' logic does make it very difficult for them to refuse. These people are not stupid by any means just very entrenched in BS fed to them from the outset of their careers.
Hi there - I don’t understand the chart - could you explain a little more please? Many thanks!🤔
I’ll do an annotated version later. Got to do some wallpapering. 😊👍
Hi Sluggishandtired
I've repasted the tables so I can talk each column through in order I'll use Free T3 as an example..
So Top table is Free T3 the most important measure - this is what body ACTUALLY uses
1st column is who did the test (NHS don't do FT3 generally so blank on those lines).
2nd column is the dose of levo I was taking so you can relate the dose to the result.
3rd and 4th columns are lower and upper range (which gets used to calculate % within range)
5th column is the result
6th column is the % within range.
7th column is the date of the test.
percentages within range is (in words)
The result minus the bottom of the range
divided by
top of the range minus the bottom of the range
Then times by 100
e.g. worked example for Free T4
result is 9.8ug (7.9 - 14)
9.8 - 7.9 x100 = 31%
14 - 7.9
The online calculator Dopiaza can do this for you - I entered a formula into a spreadsheet and dragged it down the column so it would calculate it for me.
If there is anything else I can shed light on re my results let me know - happy to help.
Note the Blue Horizon dropped theirTsh range to 0.3 - 2.6 from 0.27 - 4.2. This makes a huge difference to diagnosis. 😣😎❤
Aren’t reference ranges meant to be a 95% confidence interval? So if we took 100% of the population, so would be over/under the ref range (although admittedly some of them might be sicker). Surely that also means that some people need to be out of the reference range to be normal.
In any case synthetic thyroid hormone can’t be as good as the real thing, so regardless of serum levels being in line with non-thyroid patient, it doesn’t mean we are restored to health!
Exactly, but that is advanced conceptually. Just getting them to think of the range as something other than two goal posts that they can drop kick you anywhere between to get a result is a mammoth task 😂👍
If spreadsheets are not your bag look away now - if this information will help you here it is. Nope that's too small I'll add it as a new post. If there are any fellow geeky types out there! Guffaw!
I am newish to this particular forum. Could you explain how blood tests can be calibrated to make us look well on paper when we are not? I am interested since this must apply not just to thyroid problems but to PMR and many other complaints.
Hi humlies
that’s just it - if a doctor ONLY wants your bloods looking good on paper he is ‘treating the lab work’ not you. If you happen to ALSO incidentally be well, lucky you - a happy accident.
Any doctor should consider your symptoms first and foremost, using tests to try to guide treatment. I am well with these blood results presented in this post, but one GP phoned me up having never even set eyes on me before, introduced herself, told me my (cr@ppy) NHS blood test was back and I was’NORMAL’.. Literally that. No question about how I was feeling, was I experiencing any symptoms? Classic example- She was treating the labs.
She didn’t as it happens. I wiped the floor with her not in an abusive way, but because I have a science background had been reading hard and even then, knew more than her (and that’s not saying much) I could logically tear her to shreds.
I was, as it happens symptomatic and I was at the time in range - on 75 ug of Levothyroxine. That is half of my final dose.
There is a Huge difference between being ‘in range’ and being ‘optimal’ and I would struggle not to laugh in the face of a doctor who told me “Your blood results are back and your normal” 🤣😂😂😂🤣
For some the range will not even apply - I was lucky it did for me, but that was a whole other conversation I was potentially going to have to have if my punt on 150ug of Levothyroxine being my optimal dose didn’t work.
Incidentally I’m 5’8” and just under 15 stone that GP wanted to leave me on 75ug of Levothyroxine.
I have a friend,she is 4’ 11” and 6 1/2 stone she is doing well on 75ug of Levothyroxine.
But she is half the size of me.
That’s how absurd a lot of the medical profession are when interpreting blood results - because they negate to consider patient’s symptoms, or just dismissing them. Then they proceed to gaslight the patient.
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