This 2020 paper again shows that thyroidologists simply will not let go of the idea that TSH must be in the healthy reference range for patients on T4 or other treatment. BTW it emanates from Newcastle where the dreaded Pearce comes from. Its elephantine tramp through the TSH narrative dominates everything written here. I offer it as yet again showing starkly the TSH-driven barrier to be overcome. It's as if we didn't exist (as well as others such as Ito in Japan) who tell a different story. They still cannot get their heads around the importance of the T3 directly produced by the thyroid as a key controller in health which when the thyroid is lost has to be made up for by extra T4 , thus lowering the TSH range for adequate treatment.
Managing symptoms in hypothyroid patients on adequate levothyroxine: a narrative view
Some time since I read this drivel so just one example. They claim "Systematic and thorough investigation of the potential causes of persistent symptoms while receiving LT4 therapy will resolve the problem for most patients.". This is news to me and thousands of other patients. Where's the evidence?
They also refer to "optimized TSH". I've yet to see any study that defines "optimized TSH" let alone define which isoforms of TSH should be present. These reviews seem to be designed to facilitate the CVs of second rate doctors. From my viewpoint the only use they serve is to identify the doctors thyroid patients should avoid.
Hypothyroid like symptoms but normal people get them so they aren’t really due to inadequately treated hypothyroidism it’s some other illness that suddenly came along out of the blue - dear me there’s simply no excuse for this rubbish being spouted like it’s proven fact that can’t be questioned plus it’s a completely illogical approach to optimisation where the patient is completely gaslighted.
However, LT4 recipients, compared with the euthyroid controls, had significantly lower total, LDL- and HDL-cholesterol, higher BMI, higher total and free T4, lower total and free T3.
When they ignore that triglycerides are higher by a similar percentage in the hypothyroid groups.
They whitter on about malabsorption:
GI diseases that affect LT4 absorption
Medications that interfere with LT4 absorption
But if there is inadequate absorption, by their own arguments, the patients wouldn't see TSH remain in range if they weren't absorbing levothyroxine. (At the point in the flowchart, they have passed the Is TSH High? question with the answer No.)
Finally, aiming for TSH levels in the lower half of the reference range (<2 mIU/L) did not improve symptoms or measures of well-being or quality of life compared with less intensive management of TSH in a randomized trial
How about trying < 1mIU/L? Or lower? (If using TSH is the territory they are defending.)
Studies that look at giving a little more L-T4 have taken patients that have been treated on L-T4 for quite some time and they have settled on the best dose they can find. Thus, it is no surprise that giving a little more levo is of no benefit. The trial that looked at TSH > or < 2.0 yet again confirms that TSH is a very poor marker for diagnosis and treatment.
My endo has just screwed my meds up (T3) my levels were T3 6.6..TSH..0.05) I have no thiyroid I've been having symptoms since 2020 of needing the toilet way more especially through night very thirsty, server bad head bone pain/vibration, I had 2 over range parathyroid glands and over range calcium endo said I may have primary hyperparathiyroidism it actually looks like I have, but the endo as now dismissed me on one normal blood test, she now thinks all my symptoms are down to my thyroid meds 🤦♀️ so she decreased me from 40mg to 30mg on the TSH being 0.05..7 wk later..... I'm now very hypo🤷♀️ thanks a bunch endocrinologist back to square one, she is so insistent my symptoms are T3 related I'm calling her bluff and I'm going bk on T4 (didn't do well on it first time round) to see if any symptoms go, I'm so sick of these so called professional people ruling our lives by out dated medical advice 😠😠
Keep a log of your signs and symptoms, whether you improve or get worse. Most important write to the endocrinologist towards the end of the trial and describe how you have changed, get a copy put on your GP records. My experience is that you can't trust what they say, they tend to 'listen' to your symptoms but not document them. This way they alter the 'facts'. Make sure signs and symptoms are documented.
It’s like the dogma of those who clung on to believing the world was flat despite all the evidence it was actually round. Stupid and depressing. Yet without or until that fundamental shift in belief, a lot of treatment won’t change. Thank God for this forum.
I’m going to be doing some serious reading when we finally sell up and dial down. One of my promises to myself. One thing that strikes me is we on this forum are the ones brave enough to admit to ourselves and others the treatment we receive is inadequate.
I KNOW at least two people with hypothyroidism who live just ONE minutes walk from me who are having a terrible level of treatment - WELL AWARE of this, but are too deferential to say. We on this forum are very much the tip of the iceberg.
There needs to be a Public Inquiry into the Diagnosis & Treatment of Thyroid Conditions
My condition was not acknowledged from 2003 - 2007, even with their little TSH test showing me only 0.14 and 0.11 respectively just within the pretty worthless ranges, starting with and continuing heart issues and then a list of signs/symptoms as long as their arms + bludgeoned with fatigue!
Ignored a further 3 years, becoming increasingly ill, until I tracked down Dr S and Dr P... finally - by my own efforts and huge help from those doctors - did I get somewhere. [Wish I could post my gallery of photos = in a Word doc]. 2008 + 2008 local endos... suggested by me - ONLY as a result of TV's Dr Chris, listing signs/symptoms, saying 'Don't take no for an answer'. Endos said 'Not hypothyroid', yet looking at me where illness(es) - including several heart issues - were sooo obvious. However GP accepted Dr S's Feb 2010 diagnosis. Levo made my hyper after < a couple of months - CLEARLY T3 was MY issue - yet I got almost enough from that in Armour: it made a difference but not ideal with its T4. NHS funded Armour for 5+ years... Dr P's 2010 view was 'You'll need T3 for life', which became the reality, especially when another local endo in summer 2015 [seen only for bizarre freezing cold + 'punch-drunk' symptoms, or I'd never have gone near that Dept,] 2015 led to my being UN_diagnosed and told it was unlikely that I'd ever been hypothyroid at all. Lunacy! Then I was really on my own, plus pretty much any other hospital department was 'alerted' to my having 'self-diagnosed' and 'self-medicated' for [my view] of hypothyroidism! Couldn't Make This 💩 Up, eh!?
This is my Response to 'them', where a nice little Ducking Stool letterhead makes the point!
- START -
"The universities do not teach all things, so a doctor must seek out old wives, gipsies, sorcerers, wandering tribes, old robbers, and such outlaws and take lessons from them." - Paracelsus
There is huge variability within and between our species. My Professor, Physicist first (Hawker Siddeley, NASA) then Psychologist - changed due to huge fascination in individual human differences - this being reflected in much he taught. Unlike mice, we share so little of our microbiota, perhaps everyone needs their baseline to see specific hormonal changes over time, rather than being haplessly forced to rely on gross population averages?
“Decisions made from tests especially at the borders of any test where it could be ‘something or nothing’ are purely biochemically based. Medicine is not a science; it is at base an art between revisitation of the patient's history and a doctor who has to work on that basis. Numbers are only hints on what to do next if anything, they are not set-in stone re diagnosis; they must be viewed within an interplay between doctor-patient acting as equals in the unfolding drama.”
Some medics today may be unaware of the dear old gentlemanly (with patients!) doctor of yesteryear - educated way beyond most – in full knowledge of the privilege that status gave and which, largely, led to responsible and professional conduct. Today, with a more ‘educated’ population, it seems that some doctors ‘with attitude’ operate on a defensive free-for-all basis, where the fragile or insecure (and/or overly-confident) sneer at patients, seeking to undermine anyone who dares to question matters relating to their own health. Understandably, doctors today may have insufficient knowledge of specific/new aspects of medicine; no matter how someone may be suffering, some doctors take umbrage at patients questioning their own health.
“You know an entire field is in trouble when its key authority figures get so publicly drunk on their own self-reinforcing privilege.” Reference here is made to Hypothyroidism and Chronic Fatigue Syndrome, no more. Perhaps there is the need for doctors, in this 21stC, to acknowledge or even accept:
*Patients visit doctors not because they are necessarily good but because society has largely made it impossible to get help or medicines any other way.
*Re efficacy and/or treatment side effects, patients most likely know best. Work could be more interesting if doctors co-ordinated the experience and research efforts of patients, rather than dictate to or dismiss them.
*Far from being founts of wisdom and compassion, doctors/colleagues can get quite nasty if questioned, so can be seen as an obstacle to work around instead of a source of support.
*21stC: some medical actions may well be dictated by ghost written articles, inaccessible data and mediated through guidelines with doctors not having the confidence/guts to stand up to error, even where glaring discrepancies are seen.
*Medically Unexplained Symptoms can simply point to limitations in your or current knowledge; this should not be an opportunity to dive in with the, “It’s all in the head” euphemistic psych-junk, dredged up often when doctor doesn’t know.
Some doctors have become tyrants, unable to afford to ‘get it wrong'; some unwilling to self-reflect or critically appraise their knowledge, some reminiscent of the 'former Soviet Union', “If you disagree, we’ll…”. Weapons-grade denialism is the problem: black is white, up is down, we are right no matter what anyone says or knows.
Within limited doctor-patient interactions, a GP seems to have formed all manner of assumptions about who and what I am. Such views, I contend, are written in a cynical, spurious and prejudicial manner within my MR and even more so in referrals, having been extended to the very doctors who may have been able to help.
As a patient, now falling under the elderly classification, with several chronic and worsening health issues – some having been ignored – I seek, at this time, to make an informal complaint to have my MR rectified, to safeguard future referrals. In this regard, I ask that steps be taken to disabuse recipients/departments of flagrant misinformation and unreasonable mischaracterization of me, where Dr ?? has crossed several lines. If his efforts were to merely gaslight me - which would always have failed – yet he did not stop there. In a position of ultimate trust re patient health/wellbeing, especially when recording inaccurate information to my MR, he went onto provide worse to fellow medics. For me, this conduct constitutes abuse of power and worse. - END -
Please stand up for yourself and for all of us. 👍💚❤️💛😅
My thoughts exactly, I myself were ill throughout 2017 which started with a fine tremor then sweating, insomnia, fast heartbeat this I endured for over a month thinking they would just go they didn't so off to see my gp.. Who promptly said "ho it's the menupause" I then said "but I started going through the menupause in 2007 with no real problems" "no it's the menupause".. OK so for the next number of months I tried to get on with my life but it was unbearable so back to the gp again he said "I told you it's the menupause" this back and forth continued until I looked my symptoms up it came back every time as over active thyroid so I mentioned this to my gp who dismissed it, as time went on I became more ill then in the beginning of 2018 I begged my gp to do bloods reluctantly he did I waited with bated breath for them to come back.. They did.. All normal within range now you must know at that time I was very ignorent to getting my blood test results on printouts I know way more now thanks to this site👌.. So I believed what the gp said, fast forward to around July or August 2018( can't quite remember to exact date) I go back again to the gp I'm way worse now constantly sweating have a very noticeable tremor I'm exhausted heart beat very fast again to be told its the menupause I then mention again the over active thyroid thing he didmisse it again I then in a very firm if somewhat shaky voice said "I would like a full thyroid blood test" ... The look of sheer horror could be seen on his face.. How dare I ask for such a thing!! Anyway I got them.. 2 wks later got a call from him to say they are all normal and not to bother him again as he as other patients 😠.. I cried so much that day.. I'd been bedridden on and off for the last year. Then and I'll never forget this date 18th Sept 2018 I collapsed at home my poor son who saw my obvious decline in health rushed me to the surgery on an emergency appointment.
There I saw a completely different gp who'd only been in the practice a week she took one look at me and immediately said "I know what's wrong with you.. You have an over active thyroid... Hallelujah!!! someone who knows what they are talking about upshot I had graves and was rushed in to hospital in thyroid crisis a few months later as my thyroid was toxic I had a T4 of 100 a T3 of 39.6 TSH not detected.. I went on have a thyroidectomy in 2019.. I will always blame my gp and the surgery for their incompetence in not diagnosing me sooner, if not for that one gp who had just joined the surgery I really don't know what would have happened to me😔.. And now it's happening again!! I had really weird symptoms in 2020 going to the toilet way more especially through night server thirst bad bone joint pain server headache ( all still ongoing) because I was having bloods done for my thyroid I also had calcium done to which on 2 occasions were well over range gp never informed me I myself found them on my printouts I asked the gp what this meant he said "ho they are only mildly elevated" I immediately asked for my endocrinologist to see them.. Eyes rolling he agreed endo requested parathyroid bloods along with calcium and vit D parathyroid came back over range on 2 occasions and high end calcium writing to me saying I probably now have primary hyperparathyroidism 🤦♀️ so my para journey began after further tests it was determined I now don't have primary hyperparathyroidism as my 24h urine test was not high enough to determine primary hyperparathyroidism, so I was dismissed from that endos clinic.. I've only seen one endo face to face in sep 21 when he did a full para blood test as my surgery had not performed them correctly, that came bk normal (OR IN NORMAL RANGE) then he said I will request another one in 3 months. He did the test again in Dec 21 but did an incomplete test not performing all 3 ie PTH, calcium, vit D so the test was nul and void but discharged me anyway, I now find out through looking at all my blood tests I have a bad relationship between PTH and calcium in being that both are at the top end ... PTH and calcium have a tight range and you should see a see saw method in being if one ie PTH is at the mid/top your calcium will be in the lower range and vasi versa.. I've now been trying to get this endo to look over my results, a lovely admin lady on the parathyroid site as corolated me a time line of blood work stating all the bloods that show inconsistencies in my results,she agrees it looks like I have primary hyperparathyroidism.. but it's either total ignorence or total lack of knowledge.. I'm going with the latter that the endo still won't entertain me, I was actually diagnosed with early onset of primary hyperparathyroidism in 2004 (in my records) then dismissed after a normal blood test I've gone on to develop ostiopeania in spine /neck left thigh , calcification in knees /ankle/shoulder and heart, lost 5 teeth, have passed several kidney stones ( hospitalised) have several high calciums in my records over the years with no response from gp as to why, I have to say I've come across these doctors and specialists with this so called God like attitude, and when I go to my surgery it is because I don't feel well the gp is more interested in pushing his face into his computer smiling with glee because your blood results are NORMAL instead of just turning his ignorent head to actually see how you are looking or engaging in any real conversation on how you are actually feeling.. 🤷♀️
I do apologise for this long reply but this is my experience of the medical profession so your post struck me as being very accurate as to how we as patients are being treated by these so called professional people who I my add get paid very well 😠
Hi birkie - I understand, mine are often long too, years of no/shoddy treatment has left me unable to precis.
Oh my, how awful for you - the more I hear... especially to this extent 😱 WHY ON EARTH are they being State-funded to, not only leave people so poorly - if at all - treated, whilst sometimes simultaneously sneering at patients!? Unfathomable why they do it but, worse still, continue to get away with it to this extent.
Sadly, they'll say 'can't measure feelings' but TSH is not really measuring what they think it is in any event. As time goes on, I fear it is they who 'need help'. You look after yourself and do what you can to help your condition - great people on here can take you through a lot of information. Best of xox 🌷
Thank you, diogenes - most interesting. Do you know of/have any information on the efficacy of adding a small amount of NDT to 10+ years of Lio at 50 mg qds? Thank you.
Thank you. Just wondering whether - as age marches on - my reducing some T3 and replacing with some of the excellent [albeit minor] qualities of NDT? Unsure what introducing the larger quantity of T4 back in, something I never did too well with on its own, could do for OR to me? Guess trial and error is the way to go.
I'm still rather stunned by the lack of detailed knowledge in most medical professionals about the thyroid. And the need to be very lucky in finding a knowledgeable NHS / GP professionals or directly self fund health care or take matters into your own hands and become an expert!
Also, I wonder what the response would be if I asked for all my Tax / NI contributions back so I could take charge of my health and spend my money when and where it is needed. It seems ludicrous when we already pay for healthcare to then have to pay on top of that to go private...
They still cannot get their heads around the importance of the T3 directly produced by the thyroid as a key controller in health which when the thyroid is lost has to be made up for by extra T4 , thus lowering the TSH range for adequate treatment.
I remember reading that some patients have been told that T3 is addictive - like cocaine or heroin or speed.
Other patients have been told that T3 is a waste product of thyroid metabolism - all anyone needs is T4.
Some doctors have apparently said that NDT is a useless treatment because the pig the thyroid came from might have been hypothyroid.
And it surprises me how many patients have been told that T3 converts into T4. It isn't thatcommon, but even one doctor saying this is one too many.
Some doctors think that there is no connection between the adrenals and the thyroid.
Stories about doctors telling thyroid patients to come off their thyroid hormones for 6 - 8 weeks to check the original diagnosis are surprisingly common. This is medically sanctioned torture.
Some patients have been taken off thyroid hormones because their TSH was in range aka "normal", so that allegedly they had been misdiagnosed and didn't need thyroid hormones.
I am one such patient and this occurred during the first few months of the pandemic. Can you imagine the fear and anger? Naturally I didn't do well - I had already tried Levothyroxine monotherapy for 7 years with no resolution of symptoms. My family suffered with me as I deteriorated.
However on the plus side, once I had completed the trial, I wrote to him telling him of my disgust that he should subject me to this and pointing out the many ways I had become more ill again and he did a U turn and backed my continued use of T3. Unfortunately, he has since retired, so I am now facing an Endo who is not as supportive. I m fed up with this non-stop challenge to science, common sense and the national guidance!
My story is somewhat typical of how GPS and endocrinologist treat us🤦♀️ I was diagnosed in 2018 with an overactive thyroid not much info there for me I thought🤷♀️ the gp prescribed an anti thyroid drug to which I had tremendous trouble taking anyway I lost my thyroid to it being very toxic so after thyroidectomy I was put on the old faithful T4 at 125mg this was to much and I went hyper so surgeon decrease me to 100mg again I was hyper he then gave up and handed me bk to my gp.. Not the endocrinologist 🤦♀️ so after months on about 70mg T4 my bloods were awful eventually the gp contacted an endocrinologist ( not mine) she said I had either a conversion or absorbtion problem so she actually prescribed T3 I started on a low dose and worked up eventually getting to 40mg and felt OK.. Until April 2020 when I started with symptoms of wanting the toilet way more very thirsty, bad bone /joint pain bad headache and nauseated like morning sickness, I found 2 over range calcium in my printouts then got 2 over range parathyroid bloods endocrinologist said I probably have primary hyperparathyroidism, OK that accounts for the symptoms.. Then after one normal para blood test I was dismissed as not now having primary hyperparathyroidism although my bloods tell a different story, the endo and gp are now saying my T3 is to blame for all my symptoms, my results on 40mg were T3 6.4 TSH 0.05 so this is why you are having symptoms.. OK doc what now then.. "well we the endocrinologist and me feel you should decrease by 10mg from 40mg to 30mg for 7wks then re - set, but we feel you would do much better on T4 I did say if my results came bk bad I would then consider going bk on T4 for a 7wk trial to see if these symptoms magically disappear, OK but I'm sure the T3 as nothing to do with my symptoms, I did the decrease for 9wks as I couldn't get an appointment, anyway to my horror I'm now very hypo.. My TSH is 23.47..range.. (0.03..4.50) T3.. 1.5..range.. (3.10..6.80) T4.. 2.50..range (11.00 22.00)..I contacted the surgery as it says on the printout SEE GP IN 7 DAYS.. to ask this gp advice that the decrease as made me hypo no response from this gp I've tried 4 times through the surgery but no response, I went in person to speak to reception who could not help me.. hell they wouldn't even entertain me just asking for a gp to give me the T4 trial meds as no doctor was available, they then said a doctor from my hospital would contact me about getting the T4 meds as I would not be prescribed them without seeing a doctor🤦♀️ the hospital doc rang me and I told her everything she promptly apologised and couldn't understand why I just couldn't get the prescription at my surgery, I told her I needed to see a doc first... Nonsense she said, your prescription will be sent down to the relevant chemist today, so I've been on T4 50mg for 15 days now and still having the symptoms nothing as changed and I don't expect they will.. I think it's all a rouse to get me off T3.. I'm looking forward to my next set of bloods in 5 wks will be interesting to know what they are because before I was not either absorbing or converting the T4.. Yes they just keep us perpetually ill.. Through ignorence of this disease 😠😠
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The importance of getting serum ferritin above 100 µg/l for hypothyroid patients
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