The question as to the proportion of patients with subclinical hypothyroidism who eventually go on to overt dysfunction has interested me, as the consensus in the UK is not to read until TSH = 10. This figure is chosen to exclude subclinical hypos as much as possible. I've found a paper that actually addresses this problem. It shows that 3-4% of subclinical hypos (SCH's) proceed to overt hypothyroidism yearly. Eventually one third to just over one half become truly hypo. If this is true, then the true risk is significantly high, so high as to warrant a much more timely intervention with therapy. This is why the cutoff of 10 for TSH has to be lowered, if timely intervention is to be made possible for this group. OK, two thirds to one half may never need therapy, but the dilemma is there and I don't think the present solution is adequate.
Indian J Endocrinol Metab. 2013 Dec; 17(Suppl 3): S636–S642.
doi: 10.4103/2230-8210.123555
PMCID: PMC4046597
PMID: 24910826
Subclinical hypothyroidism: Controversies to consensus
Syed Abbas Raza and Nasir Mahmood1
Written by
diogenes
Remembering
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I was assessed initially as sub-clinical and was reviewed a year later and found to be overt. However I was lucky that the GP decided to treat me (not that Levo ever worked for me) because my TSH was 2.9. My Free T4 was below range at 10.9 (12-26)
I have always thought that 'subclinical' was an excuse not to treat, as surely all hypothyroidism is hypo, subclinical or not. And whilst the medics may deem medication unnecessary do they really know of the long term affects of subclinical? I suspect I was not treated as 'subclinical' for ten years, but know I had problems all my life, sleeping too much as a baby, growing up lethargically, tired and cold all the time. Periods that had me fainting, or just so weak people thought I'd fainted, on a regular basis, to name some of signs. Even when goitres and other symptoms became more obvious, because it was intermittent they ignored it for 10 years more. What damage was caused in that time? A further 20 years on T4, left me wrecked. Was the initial neglect responsible for me not being able to tolerate, process T4 properly? Could things have been different if I'd been started on medication much earlier, who knows. Maybe my adrenals would be working in better order, not always struggling? Who knows.
but Hypo is hypo - it does not go away and it is a problem, surely any deficiency, low or intermittent is not doing the body any good, longterm?
Testing me earlier on didn't do me much good, LOL. Madness isn't it. But they see it as a later onset condition, because they don't recognise it starting. Yet it is a lifelong condition, it has to start somewhere and if there is a predisposition for it, it is not switched on overnight. It is often a gradual deterioration, and as most Hypo is caused by Hashi's, which is then gradually destroying the thyroid, it is crazy to not be regularly looking and screening for it, and treating it asap.
Trouble is the NHS seem happy to throw lots of money away! The biggest problem we face is the symptom treatment ethos that prevails. That is what BP want, lots of medications for lots of symptoms, not in the least bit interested in treating causes to stop the myriad of symptoms. They like symptoms. Didn't GSK say something along the lines that they have got involved with 23andme to be able to identify health issues earlier and hence develop treatments. And no doubt pulling genotyping of DIO2 rs225014 was part of the deal! What else have they pulled from view? Does that mean that the statistics on this gene SNP will not be collated and recorded, hence need for funding and research will be directed away, elsewhere?
A bit OT, but as genes was patented for years giving a certain gene protection meaning no one else could work on it or develop treatment , I reckon that has so much to do why things are the way they are now.
Therefore tests either cost a lot or are unavailable to public as whoever has the patent of the certain gene didn't license the test method which made it possible for them to overprice the test they developed.
Rule of patenting genes has changed but as it has been going for decades there are loads of genes that could have major impact to certain health condition, but as it was kept by owner of the patent whom might not have even tried to develop treatment, just expensive test method, so many health issues have gotten worse.
Manipulated DNA can be patented so I think that won't make things much easier in the end and,as we know medical companies don't have to study/research/develop test develop treatment. They can patent stuff, bury them deep and continue feeding us shit.
I had my last Hashi's 'hyper' swing at 50 - just at the right moment to give me the energy to get divorced and escape! So, I was riding a high until 54 when I started getting terrible, crippling back pain, and got sucked into the medical system with that, ending with a diagnosis at 55. How I miss those 'hyper' swings!
This seems to be a foregone conclusion and I cant help but think that money is behind the 'not treating people until TSH is high' even though the patient may be bed bound and have multiple debilitating symptoms.
I read somewhere that the NHS are only allowed to diagnose a certain number each year and as this condition is increasing, it is a way of keeping the numbers down, therefore saving money in the short term. The down side for patients is that they become very ill indeed with other medical problems caused by the non-diagnosis and non-treatment. I also was told I was subclinical which I understood meant 'no treatment necessary . . . . . how many years does a person have to lose to chronic health and how ill does a person have to be (I had 98 symptoms and still no one was listening). I am not alone with this, it happens to thousands . . . . this is a very cruel system of thyroid 'non care' that has been created and it it is high time it changed.
Yes I agree and a way of hiding the real figure and scale of the problem. It is on the increase worldwide. One has to question why they are so scared of it coming to public view. Is it because they know what is causing the increase? Hereditary factors, fluoride intake, pollution, or such, and they are maybe avoiding possible lawsuits. Or is it that they know that thyroid conditions, impact on most if not all other health conditions, and the big pharma won't want that publicised as they won't want funding and research to actually go towards cause rather than symptom. I have been questioning the motive of GSK buying into 23andMe recently. Announced 5 months after 23 pulled the DIO2 testing? I and others could not get a proper explanation from 23 as to the reason for pulling that reporting, at the time, now it seems very clear.
Not forgetting the heart diseases and mental health issues that can be eradicated with good thyroid health. Makes sense that many things can be caused by low level hormone functions.
I quite agree. UK endocrinology seems a law unto itself determined to keep people ill for as long as possible to what end other than to deliberately causing unnecessary suffering, and paint women as crazy and hysterical (given it afflicts women mostly) I simply fail to fathom. If it is fiscal, it is a very false economy. How will change ever be affected? They seem impervious to research and new findings and devoid of a global perspective.
I was diagnosed as sub-clinical with TSH of 7.84 and FT4 of 11, after my husband died in 2012. Took me six months to get a diagnosis - kept being told I was grieving and had insomnia. No explanation why I had to wear a coat and scarf at work in the middle of summer! Tested both antibodies and they were in the hundreds! I have never been optimal - they "think" I have a pituitary problem as had TRH test, but MRI shows no tumour (so they're ignoring it). Finally got T3 this year and have since discovered (through private testing) I am heterozygous for DIO2 gene. The earliest blood test on emis is 2000 and I had TSH of 3.8 and FT4 of 11.0, so I've been underactive since then! Probably since 1996, as I "felt different" when I turned 40. More tired and putting on weight for fun. Had just been promoted at work though and everyone put it down to that. I know it was my thyroid.
Thanks for this I will read it later. Some comments:
The best known document on risks of progression to primary hypothyroidism is the follow up to the Wickham study pdfs.semanticscholar.org/15... which shows increased hazard ratios for subjects with elevated TSH or antibodies. Interestingly it didn't find an increase risk in those with a family history of thyroid disease. (It's been quite some time since I read this and the other documents I'm referencing).
More important a couple of studies led by Graham Leese found that 'subclinical hypothyroidism' is associated with increased cardiac and bone risk.
We are always being told about the risk of a suppressed TSH but not the risk of a mildly elevated TSH.
A dislike the term 'subclinical hypothyroidism', it is a 'mildly elevated TSH' and should be described as such. You can't define clinical condition by biochemistry, especially when many patients exhibit clinical hypothyroidism with mildly elevated TSH levels. An elevated TSH (with low fT4) is a marker for primary hypothyroidism, it's a specific but not a sensitive marker.
Patients with resistance to thyroid hormone, usually due to endocrine disruption, can have severe hypothyrodism with a normal TSH. Patients with an abnormally low set point
can be hypothyroid with a normal TSH.
Finally a mildly elevated TSH may tell us something about the secretion of the thyroid but doesn't tell us much about the deiodinase capability of a diseased thyroid, the pituitary will happily respond to the extra T4 stimulated by a mildly increased TSH whereas peripheral tissues may not.
It all comes back to treating the patient not the numbers, at least until you have a good understanding of what the numbers mean.
What is normal ? Did you have copies of your results ?
I've never been what the doctors would call 'overtly hypo'. I was diagnosed a couple of years ago with a TSH of 4.95. Fortunately my GP decided to treat me as I also had raised antibodies, and a family history of autoimmune disease. However if you went by my symptoms I was very hypo at that point. I would hate to have been left till my TSH rose to 10!
You are absolutely right that the assessment of those who are sub clinical hypo is inadequate. At TSH 3.5 I had weeks of heavy fatigue and other symptoms but never mentioned to my GP - approaching menopause so assumed it was that. Then 18 months on felt dreadful and thought must be something sinister. TSH 6.8. All the usual responses from GP. Only by getting medicheck test with both antibodies showed pretty high did GP accept I needed treatment as likely to become overt.
I'm really really lucky that I have a great rapport with GP now, we've come along way. She knows I add NDT to levo and accepts I look after myself well. Wish the NHS did more but decided to use my energy getting myself well.
Recently had a DXA scan which showed bones were good, nice to have a base line and so I'm a tiny n=1 study of how combi therapy impacts bone health.
I am one of those who had a set of TSH results showing a straight line upwards from about 2 to just over 5. That TSH increase steadily over the months was taken as indicating need for treatment. Further, it was only then that I got an FT4 test as well (bottom of range). So elevated over a longer time was more important than reaching 10.
Here is a patient who is so very glad not to have been forced to wait until TSH reached 10. Enough things were happening already.
I agree that a single TSH test that is somewhere near 10 is an inadequate basis for diagnosis and treatment. But that is partly because what is actually needed is, as so often pointed out, FT4 and FT3 as well. Base decisions on what is at least a slightly more complete picture. Further, it is important to ensure that there wasn't some temporary factor. Maybe we need a proper analysis of how best to distinguish between a one-off elevated TSH and an ongoing elevation?
I had several bloodtests done in the years when I suspected there might be something wrong, before the final one that registered the magic TSH of 10 to achieve the hypothyroid diagnosis... Never at any of these tests did they actually test for FT4 or FT3, just the TSH! Then I was put on Levothyroxine and left to rot on that for another 6 years of ever-increasing doses achieving nothing, before my endo finally agreed that a TSH of 4.69 was still too high and agreed to put me on a T4/T3 combo that gave me my life back and which I have been on ever since. Since then both the FT4 and FT3 levels have always been tested alongside the TSH (which now is utterly useless) which has been suppressed (unreadable) for years. My last DEXA scan came back with a result of better than expected for my age (61 at the time)! I prefer to go on how I feel and wish they'd stop putting such a reliance on a test that has been made utterly irrelevant by the regime I am on...
I agree with the points you made though i find it frustrating that no matter what blood tests show, clinical symptoms are always ignored (except depression) at which point we are offered anti depressants and the remaining physical symptoms blamed on depression. I pointed this out to my psychiatrist (who the GP referred me to behind my back because I was upset at not being treated for thyroid condition!) and reminded him that very depressed people are even given T3 at times so how is it we are constantly told T3 is useless for thyroid problems (depression being one symptom) and there is no evidence to say it works blah blah. Show me the evidence that T4 works then. Why is it okay for Drs to keep many of us ill on T4 only (one size fits all) rendering us bed bound? Why wont they help us by giving the appropriate hormone treatment that makes us well, then we wont cost the NHS so much in other medications caused by deterioration in health? The answer is obvious. The overall plan must be to deliberately keep people ill with deteriorating health so that we all lose our quality of life and become cash cows for BP. The people in power often have vested interests in the way of shares in drugs so of course they don't care one jot about the health of the majority. Who else apart from the patient actually cares?
I had a sub Thyroidectomy in late teens I was very quickly put back into care of GPs. I had a yearly blood test!
I have recently got medical records as had asked for hospital notes but they had been destroyed so thought i would find out why I was hyperactive asI had a thyrotoxic crisisI but nothing at all in medical records either
I wanted to know why they told me i would die before i was 40! I am 55 I didnt really pay much attention to much at the time as was really not very well . My mother had dealt with all drs back then . she's now dead so I guess will never know as have no info on it no hospital notes left or any mention of thyroidectomy in medical records .
I only have evidence of 2 TSH tests and no T4 or T3 ever tested , The TSH was 2.8 in 1989
I have always felt low since the thyroidectomy very low energy, deep voice hair never grew basically quite a lot of hypo symptoms but was only a size 8 so never over weight so doubt they suspected Hypo,
for all those years I had no reading info about hypo I I think they told me i would go hypo but not to worry i would take something for it and be well ,
i I know I really struggled most of my life and was having yearly bloods done but was never told the results ever I just presumed they had been ok as they never called to tell me anything
The weird thing is no Thyroid tests in my notes after 1989! . and only 1988 & 1989 TSH results in med records
Many GP's have tried treat me for for depression on and off for years but i hated the affect as i obviously now know I was not actually depressed I was tired as Thyroid was knackered and no one ever investigated my thyroid further..
Gps should not be allowed to care for you after thyroid surgery as they do not know the symptoms I should of been able to stay with the Endocrinologist and may have been investigated much sooner, as guessing my TSH was always below 10.. surely they should of tested more than TSH after taking most of my thyroid out and me having a lot of hypo symptoms which i never at time realised they were hypo !
In fact no Gps should not be in charge of anything to do with the Thyroid as they have not got a clue !
so No sub clinical for me just Chronic Hypothyroidism
I was diagnosed in 2002 with chronic hypothyroid and my TSH was 7.5 and T4 was 14 it was only i had been asleep almost coma type sleep for a few weeks thats why they tested TSH and T4 .
So all the Gps and I moved around a bit so I saw many! all of them totally bypassed the sub clinical bit with me but at a guess i was probably sub clinical not long after Sub thyroidectomy..
I cant believe how badly I have been treated since it was them that destroyed my thyroid
Im also not impressed on Levothyroxine mono. T3 T4 mix is better and still not impressed with GPS on anything re my Thyroid !
I was left to rot on levothyroxine 14-15 years till i joined this forum last year and got told about being refered to Endo and why I was unwell and that my Fibromyalgia was a sign of under treated Hypo an
I found out about T3 and dio2 genetic fault I have
, i also have a dio1 fault but do not know what that even means tbh..
My TSH now seems stuck at 0.004 from when i was on Levothyroxine mono whichwas like that quite a while and still stuck even though levo was 1st reducedto 150 then 6 months later reduced to 100mcg and T3 added stiil no shift T3 is top of the range,, I am now convinced blood tests definitly do not match with how I feel and never have done since the thyroidectomy, ..
I think the whole blood test is flawed on the Thyroid with me !
I must be the one of the 5% that the bloods are obviously not in the range they have with chronic hypothyroidism with a TSH of only 7.5 shows its not a true indicator to me
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