A little bit of advice

[diogenes]

So many times on this forum do I sense that treatment of patients is arbitrary -the target for best treatment isn't known because the biochemical numbers for TSH, FT4 and FT3 in health were unknown and therefore there is no target to aim at. If only we could start a protocol that, once and once only, measures these parameters in health so that if illness strikes we would know what to aim at as therapy -however it was done (T4 only, T4/T3 etc). The cost of archiving healthy numbers would be far outweighed by the fumbling about that ignorance of these numbers causes when dysfunction strikes.

[Rapunzel]

I would agree but for the fact that it is 'numbers' that got me into the situation I found myself in; despite an 'in range' TSH I remained very unwell, yet my GP continued with broken record alacrity to proclaim that I was well.

Until the dogma is eclipsed that blood tests are given more weight than the sentiment of the patient, arbitrary treatment will continue.

[Ruthi]

The problem is how to get it done. My children are now old enough to make their own decisions, but if I had known then what I know now I would have had all the baselines taken when they were 18.

While we have a National Sickness Service I can't imagine it being done by the state.

[UrsaP in reply to Ruthi]

I suspect Ruthi that even taking baseline readings at 18 may not produce a 'normal' reading. I suspect that I had problems from being a young teenager and probably since being a baby. It would need to be done when the person was feeling very well. But there may be some who will not know what feeling really well is like.

[Kitti1]

I may be wrong as a relative novice. But is it always true that a patient once diagnosed would return to health when their original TSH, T4 & T3 levels are restored to their own original level ? May it be the case that hypo patients, for whatever medical reason, need lower TSH levels & higher T4 & T3 to feel well. I arrive at this conclusion after reading endless cases on here, where mid range even low range ( around 1 ) TSH does not return the patient to a euthyroid state.

Is synthetic really as effective as the bodies natural chemicals ? Could it be similar to a transplant patient rejecting a new organ ? Perhaps not the best analogy,but it appears to me that, even when bloods indicate euthyroid status some patients are still not fully well.

[diogenes Remembering in reply to Kitti1]

It all depends on how quickly action is taken to restore health once the problem is clear. Quick action should try to return your numbers to what they were when healthy. The greater the delay, the more your body tries to adjust to the new situation however dire. Then, what we call the "setpoint" which was true in health may have become irrevocably altered so that the target has shifted. This is the reason why prompt responsiveness to thyroid problems at the outset will cause a lot less difficulty than if there is footdragging.

[Kitti1 in reply to diogenes]

Thank you Diogenes, that confirms my laymens suspicions. Without wanting to argue with one so esteemed and much more well informed than I. But, with the nature of hashimotos is that not near impossible ? I was diagnosed at 18, when my thyroids out put plummeted relatively all of a sudden. Although diagnosis took much longer. But with what I know now and on reflection, I believe my hashimotos was effecting my thyroid even as far back as early childhood. With memories of bad light sensitivity, poor concentration, poor memory, weight gain ect ect.

[greygoose in reply to Kitti1]

I was thinking the same thing. And, given how difficult it is to get a doctor to even consider a thyroid problem, it's very unlikely that prompt action will taken for most people. Doctors - apart from being so ignorant of all things thyroid - seem reluctant to even test, let alone diagnose and treat.

[diogenes Remembering in reply to Kitti1]

You have hit the nail on the head. When should the baseline healthy sample be taken? Owing to the fact that children as well as adults fall prey to the disease, we're never going to chose an age that will catch everyone. But I'd rather have a protocol that catches most rather than one that catches nobody.

[UrsaP in reply to diogenes]

Ah diogenes if only! Isn't half the problem with hash's that it causes the levels to fluctuate, hence making it difficult to get that diagnosis quickly, when reliant on the 'elusive' blood test?

[diogenes Remembering in reply to UrsaP]

No: the idea is to measure the parameters when healthy before any disease sets in, so as to have a target to aim at for treatment, at any time when measurements are made in disease.

[UrsaP in reply to diogenes]

I do see what you mean, and maybe that would be possible for most, but who says 'when' would be the 'healthy' time.

I reckon I started as a baby with problems, subtle that no one realised - sleeping all the time. (turned blue at a few days old - think this may even have been a trigger - lack of oxygen) Very quiet shy child, think I just lacked energy - wanted to be inside reading or drawing, rather than running around in the cold. Loads of other issues that now tie in with thyroid problems.

And when teaching I could 'see' children who were potentially UA. When signs are often 'clear' to us, why are they not to Dr's?

I appreciate that you may catch most of the people as 'healthy' but there would have to be a definition of 'healthy'. And consideration that a % of those may not be as healthy as thought.

[ajs100uk]

I just wish there was a day (SOON) that some 'esteemed' doctor, or group, or group of doctors, would stand outside the decision makers office (whoever makes the decision about diagnosing on blood tests only, as that is what they do for thyroid patients/takes away T3 etc), naked, with placards saying 'enough is enough, we refuse to let our patients down any longer!'

I am thinking naked for added impact lol However, perhaps just the placards would do it, or maybe just speaking out to these people who make the guidelines and refusing en masse to abide by them.

One can dream that people who are meant to be looking after our health would actually do something like this when they must surely see that something is wrong here. I just do not understand it, oh, unless they are more concerened about money than our health.

[Katepots in reply to ajs100uk]

Iif only, that would be a miracle! I"d love to stand with a placard but maybe not naked these days 😂 However what I'd really like to do is chain myself to something for a real old fashioned protest!

Hundreds of us all chained to the railings outside no 10

Not naked...

[LAHs in reply to Katepots]

Good idea. I would join in but I am a bit busied out at the moment what with the election of a lunatic here in the US!

[ajs100uk in reply to Katepots]

I sympathise!

Besides, the people who matter would no doubt take no notice of 'us', it would have to be their peers/equals/advisers/etc etc - the ones who are apparantly doing nothing.

I am afraid whilst there is money to be saved and money to be made nothing will ever happen.

[ajs100uk in reply to Katepots]

Ha ha!

know, and it is such a shame it would take a miracle. I am pretty sure many doctors/experts know they are doing wrong by their patients.

We all read about the ones who literally rebel to treat their patients and we hear about good reasoning to make changes, such as this post, but there does not seem to be a single 'thing' challenging what is going in. Not from experts, doctors, or charities/groups that say they 'represent' thyroid patients.

Have you seen a 'cause' ask for help/donations to challenge what is going on? I would donate/support a cause that challenged the current guidelines/intended around diganosis and T3 on behalf of thyroid patients but there is not such a cause.

[Justiina]

My ft4 was 18 ( 10-21) and TSH 1.4 (0.4-4) 1999. Yes that was the range for TSH over here in Finland back then. Still the same range.

Well I was not in my best health back then but I assume that is somewhat close to my set point as my levels did not change that much for few years. 2002 ft4 17 and TSH 1.9. Same range.

My ft4 was 17 until 2016 when it pretty much dropped down to 10 within a year. For a nurse this was alarming change and she agreed it's huge drop and indeed if my levels have been 17 to 18 previously this is not correct.

My ft4 now hovers around 10,11, 12 ,14 and the drops again.

For nurse it's still alarming.

My ft3 is fluctuating wildly from 2.5 to 5.9 (range 2.5-6.5). Different labs and methods so can't say which one is the most accurate. First time tested 2015 so no record from 1999 nor 2002.

My TSH has been highest at 3.6 and that's the only thing that matters for my doctor. Even though she asked what symptoms I got when my ft4 dropped. I told her I know when it dropped as sleepiness started immediately instead just fatigue.

Still no relevance for her because TSH didn't rise above 4. It now hovers around 2.9 and 3.6.

Nurse at lab commented it by asking how come I am not medicated yet and I should be as this has now lasted for over a year and ft4 is not normalising. So its not transient for sure.

Doctor still disagree. Even though I was able to say between last two tests when my ft4 had dropped. It had increased from 10 to 14 which I felt , was slightly perkier, but I knew it had dropped again and doctor agreed to test again and ft4 had dropped to 12. I assume the increase was season related , I live in artic circle and circumstances here are very variable going from darkest dark and -35 c to very bright long days in short time.

Still no relevance. No even though I can point out the time frame when it dropped the first time and fluctuations since.

And ft4 14 is still far away from 18 which I assume is quite close to my set point for ft4. Ft3 is harder to determine as it's not tested every time. Twice I have had Tpoab borderline.

But I can't blame my current doctor in my situation. I have been ill for years starting from chronic yersiniosis and multiple deficiencies. I have had several over lapping conditions. But correcting them then lead to drop in thyroid levels. So my doctor is deeply puzzled.

But I as a patient know best. I know what has changed and when and I have now 6 thyroid test to prove it's true. All nurses I have spoken to back me up and agree it's relevant but that doesn't help me much.

Top notch private endo said I never have and never will have thyroid issues and prescribed fibers to IBS. And that's when I run out of money and I'm solely relying on GP that can't prescribe levothyroxine as she fears losing her licence , and rules don't allow her to refer me to endo either.

So I am in never ending limbo even though I have black on white to show how much my levels have changed and I do not think it's age related yet as 1999 I was 19 and now 38.

[Katepots in reply to Justiina]

You could try self medication like a lot of us. Once I ditched the Dr and medicated myself I haven't looked back. Feel pretty well now and under Drs care I felt like I was dying.

[ajs100uk in reply to Katepots]

It is so easy to say 'try self medication'.

I was ill for all my adult life, I am now in my 50s. I have constantly fought to get a diagnosis. I have burnt myself out doing so.

Over the last 10 years I manged to scrimp and save £2000. That is alot, ALOT, of money to me. I was hoping to have a holiday or something, which I have not had for 5 years.

I had to take the decision to 'self-treat' and use that money because I could not live how I was anymore.

I have spent all my savings, consulting a private doctor, paying for tests, and buying meds and supplements. I have no money left, so I can get no more help!?

Where do I go from here? Why can I get a diagnosis/treatment privately but not by the NHS, it almost counts for nothing if I cannot continue my treatment.

[Justiina in reply to ajs100uk]

Where I live blood test for thyroid privately costs more that private doctor for an hour. Even specialist for an hour is cheaper than getting TSH and ft4 tested. Add ft3 to that and you'd get to see two specialists.

If I had to self monitor and titrate my meds every 6 to 8 weeks I'd spend 1800 to 2500 euros in a year just for blood tests. It's far from fair.

South we Finland that would be 10 times less and that would be doable.

[Katepots in reply to ajs100uk]

Ajs100uk have you thought of trying NDT? I got a years supply for around £50 and I feel great on it. I also am 50 and had been ill since my early twenties and undiagnosed until my 40's.

I sympathise as I too saved for private bloods and then a private endo who was useless. So I then decided to read everything, treat myself and go on how I feel.

[ajs100uk in reply to Katepots]

Yes, am on NDT :-). Early days but am hoping for some help from it.

Apparantly, my main problem now is low cortisol. God knows how I am going to sort that lol

[Katepots in reply to ajs100uk]

Great you should start to feel better, really hope so. Took me a couple of months to start feeling benefits.

Good link to low cortisol.

blog.udemy.com/low-cortisol/

Mines too high 😩😳

There's always something!

[Justiina in reply to Katepots]

Unfortunately can't do that. Can't order prescription meds without prescription to Finland.

Otherwise I would try it.

[UrsaP in reply to Katepots]

Problem with that Katepots is that you become an invisible statistic. It also puts you at risk should you become incapacitated at some point and admitted to a hospital. How would medics know what meds you take? And I'm in no way having a go at you, or anyone else, who have been forced to do things for yourself. I totally understand. But the whole treatment of thyroid issues are wrong and need to be addressed. For all our sakes. I very cynical at the minute, and having heard that some medication was held up at Heathrow a couple of months ago, and other medication had been turned away from port. Medication I have been getting, without problem, and it causing no problem, for over 7 years...and suspect others getting it longer, so why now is it being scrutinised and refused entry?

Being cynical, I suspect they are checking where imports are coming form and trying to scupper medication being imported for self medication.

So for all or sakes we need to address this properly and get the whole process changed. From getting better diagnosis by not relying totally on the ineffective blood test, to choice of medication whether it be T4, T3, NDT or a combination -to suit ether individual. And better training and understanding by medics.

I honestly believe there is enough of us, if we all stand together, to be heard.

[Katepots in reply to UrsaP]

Completely agree, we do need to stand together and get medicines that make us well prescribed by our GP's. There is a worry with the NDT I take as it is unregulated but I felt I had no choice. I was left almost unable to get out of bed, couldn't string a sentence together and was not able to lead a normal life, now I'm up at 7.30 and do a whole days work on the farm.

I wouldn't go back to levothyroxine for anything.

Have you joined the ITT campaign?

We are a group who are going to campaign to Improve Thyroid Treatment

To change the Royal College of Physicians - RCP & British Thyroid Associations - BTA policy of testing and treatment for Hypothyroidism. Thus changing the protocols of testing & treatment provided by GPs and Endocrinologists. To stop the ban of liothyronine T3 from the prescribable medicines list.

We will achieve this through Petition, Public awareness & Pressure

Here is the email if you're not already in.

[e-mail]

A lady called Catherine is who you need to contact.

Think she is Kitti1 on here??

[UrsaP in reply to Katepots]

Hi Katepots NDT was used, regulated or not, for many years with good results. It was only the intro of T4 that pushed NDT out, with exactly the same rubbish they are spouting re T3 today - It used to, still does, infuriate me seeing 'there was no evidence that NDT was any more effective than T4' - making it sound like there had actually been studies done. When of course there hadn't but that didn't matter as long as to the general public it sounded as if it had. Grrhh!

Note the similarities with T3 - 'There is not evidence of benefit'....!

Re ITT. Yep I'm in there... but keep recruiting!

Glad you are on board too.

[diogenes Remembering in reply to UrsaP]

Prof Bianco did a sweeping survey to discover if there ever had been any published trials of NDT v T4. There weren't any, so by today's definition that a randomised controlled trial is the only way to determine the value of NDT v T4, there is no eivdence one way or the other. Any statement to the contrary by the authorities is simply "garbage".

[UrsaP in reply to diogenes]

My point exactly diogenes I remember looking some years ago - and found nothing. I also remember questioning someone who responded to my enquiry that there was no evidence of NDT being better than T4...I asked them what evidence they referred to and I believe they could not produce any 'real' evidence. Words! Can be so dangerous and can so easily be manipulated.