TSH testing and shared decision making??

TSH testing and the wait and see approach - I have never been diagnosed with hypothyroidism but I very much believe that it is the root of many of my problems. Recently having visited my GP I had tests taken for thyroid function the TSH came back at 5.5 and FT4 at 12.8 so marked as normal no action necessary. TPO antibodies positive on testing in 2012.

The reference range used for TSH has an upper level of 6.0 at this particular laboratory. However what I find concerning is that the TSH levels were taken although I was suffering from hypothyroid symptoms at 8.30 in the morning but with no one saying that it should be a fasting sample or even asking whether I had eaten or not. It is only since then I have seen in research papers that there is a statistically significant drop in TSH after food and with some variation over the day. Has anyone else found this?

Curiously given the links between hypothyroidism and cardiovascular disease the locality which has a "normal upper limit" of 6.0 has a particular high mortality ratio for cardiovascular disease. Women generally die 4.9 years earlier than the UK average and men 12 years earlier generally in this area but the my GP reassured me that I am "normal". Are there reports comparing the reference ranges over the country at different laboratories so it can be compared to underlying disease that anyone knows?

Additionally my dad died from 1) left ventricular failure 2) ischaemic heart disease and from 2 brothers and 2 sisters there are 3 with pacemakers (the ones like my dad). My pacemaker for a period of asystole so if hypothyroidism is linked with bradycardia, then I figure you can't really get more bradycardic than asystole. Also suffering from depression some periods of loss of consciousness with shaking but usually as very cold! 

I usually avoid taking antidepressants as they have previously caused me to lose conciousness (Doxepin) or lose consciousness and vomit (Seroxat). Unsuprisingly (well at least to me) they did not cure the depression!

Sorry that is my rant for the day done. Now I'll go and disturb my cat from his blissful slumbers so he doesn't nibble on the fireplace whilst I'm asleep!

24 Replies

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  • Welcome to the forum, Elizabeth 14.

    Shared decision making between thyroid patients and their doctors will be a wonderful thing if it every happens. 

    Early morning and fasting tests aren't an imperative.  When thyroid patients find papers like those you mentioned they pass the info on so that others can ensure highest TSH is presented when looking for a diagnosis or dose increase and for others to avoid dose reductions.

    You could present your research into hypothyroidism and CVD along with your family history to your GP to see whether he would be prepared to trial you on Levothyroxine.  Trouble is a lot of GPs know very little about thyroid and hide behind the guidelines.  Many spout that prescribing Levothyroxine when you don't have a thyroid problem (even when your levels at the top of range) causes heart problems.

    My puppies were as good as gold when I was at work but turned into monsters during the small hours and chewed up my newly sanded and varnished floorboards and skirting.

  • Thanks for the reply I tried that but to no avail said they could check it again in  3 to 6 months time. Currently  waiting for neuro appointment for possible seizure. I have played badminton for years but sometimes even played wearing a coat and gloves. I know what you mean with the puppies though. Smudge sometimes looks at me when he goes to do it a sort of what are you going to do about it look. The reference ranges are ridiculous though Blackburn 6, Leeds 4. Manchester I think 4.5 so you can be normal and abnormal at the same time. It promotes inequalities in health.

  • Elizabeth14,

    The testing machines a lab uses and the local population samples tested by the lab determine the ref ranges.  If your TSH result of 5.5 is 95% of the ref range 0.35-6.0 you could expect it to be 95% of the lower ref ranges in Manchester and Leeds although the actual results will be lower.

    labtestsonline.org.uk/under...

  • I didn't think that applied to TSH. If that is the case, there's no point in telling people their TSH should be one or Under, because it will depend on the range.

  • GG,

    Why would it make a difference to saying TSH 1.0 or lower is desirable for people on replacement?  We're talking about getting a diagnosis when the top of range can vary between 4.0-6.0.

  • If ranges vary due to the machine they use - as it does in FT4 and FT3 - the 1 would not mean the same thing in every range.

    You just said "If your TSH result of 5.5 is 95% of the ref range 0.35-6.0 you could expect it to be 95% of the lower ref ranges in Manchester and Leeds although the actual results will be lower". By that logic, 1 will not be the same percent of the range in every range. Or, is perhaps the percentage irrelevant?  

  • GG,

    helvella explains it in this link healthunlocked.com/thyroidu...

  • Well, that wasn't terribly clear, but what I take away from that is that he was talking about FT4 and FT3, not TSH. Otherwise, why would people always go on about getting the top of the TSH range lowered? That just doesn't add up.  

  • GG,

    The bottom line is where your results are in range matters.  For those wanting a diagnosis it is TSH over range.  For those on replacement it is 1.0 or lower.

  • Yes, I know all that. But you were talking about percentages of the range. And I just Don't see where that fits in with TSH. I think what you said was very confusing - especially for new people. :) 

  • Apparently the local population is not used to determine the reference range now. Usually the reference range is determined by the manufacturer of the instrument / antibody supplier who are usually the same. The reference sample should not suffer from the same limitations that it would if you were restricted to a smaller geographical area. The local area may suffer from high morbidity / undiagnosed hypothyroidism. 

    When the reference needed to be defined the local population often corresponded with the "lab staff" who were the unofficial guinea pigs but apparently the powers that be decided it was probably not quite ethical and there was nothing to say all the staff were healthy anyway!

    The problem with the reference range though is that really it is all a little nonsensical. Although what is being said seems to be that it is where the TSH level lies in the reference range (ie 95% of reference range of 0.35 - 0.6 and 95% of 0.2 - 0.4) that matters. The figure itself would be different but it is the comparative position in the reference populations that should be the same, and as such an individual figure is meaningless without the corresponding reference range. However an arbitrary figure of 1.0 is then introduced. How does that relate to the reference range it is then like measuring apples and oranges?

    Whilst I appreciate the analogy about the speedometer and there may be some variation between car manufacturers such that one may read high or low. I really could not imagine the local police force accepting that as an explanation if you get stopped for speeding. Nor would having a debate that a 30 mile limit in Manchester actually corresponds to a 35 mile limit in Leeds because it depends on who manufactured the speedometer / speed camera. 

    If you introduce one figure which is used as a trigger point for treatment there would have to be some agreement in the reference ranges between labs otherwise it becomes ridiculous. 

    Additionally there needs to be more research into the costs and benefits of treating clinical symptoms of hypothyroidism when TSH is in range but there are clear risks present (family & pesonal history). NICE Clinical Knowledge Summaries and Guidelines are all well and good but actually in practice they are not followed due to factors of time and money but in the end it impacts on patient care.

    The burden from cardiovascular disease and depression is high throughout the country and should be tackled. However there is insufficient evidence gathered and what there is does not seem to be collated and used.

  • Elizabeth14,

    The unscreened lab staff sampling was discontinued a long time ago but I believe local population samples after abnormal thyroid results are screened out are still used.

    The figure of TSH 1.0 isn't arbitrary, it's an observation that it suits most people although some need lower or suppressed TSH <0.01 to feel well.  The comparative difference of where 1.0 is in ranges which in the UK start at 0.27 or 0.35 is so small as not to be significant.

    As someone who felt desperately hyper and then hyper and hypo with unequivocally euthyroid TSH, FT4 and FT3 I would like to see research into the impact of positive antibodies in symptomatic euthyroid patients and more research into the impact of subclinical hypothyroidism on CVD, depression and fatigue.

  • I used to work in a lab and when the machines were calibrated etc we were the guinea pigs. It is something I remember as unfortunately they found me a little difficult to bleed, having tried various places, arms, back of hand etc. Finally returned back to the lab accompanied with my empty vaccutainers as the phlebotomist stated she was not going to try again and adorned with various bits of cotton wool!

    Some of the research I think they need besides the role of antibodies in subclinical hypothyrodism is what effect the neural ennervation (sympathetic and parasympathetic) has on thyroid function because although having less effect than TSH it was a quicker response and after all any organism needs to respond to its environment fairly quickly hormones are usually slower. 

    Makes me wonder about the conversion to T3  and the production from the various pathways and how much time does each pathway take / how much is produced. Is that having an effect and what is the effect on the timing of hormone release? 

    The level of antibodies to TPO I would have thought would place a restriction on the conversion to T3 from MIT and DIT as it is supposed to use TPO unless there was excess TPO present to start with compared to the antibody level.

    Overall I think there are more questions than answers.

  • I was diagnosed with Hashimotos in 2005 - with an in range TSH - FT4 - FT3.  The anti-bodies were HIGH.  I was started on T4 and am now T3 only.  My GP here in Crete and the Endo - suggested treatment to support the thyroid whilst under attack from anti-bodies.  A simplistic explanation !

    Have you considered self-treating ?  Many of us do.  You may wish to make a case for having the FT3 tested - your FT4 is low in range which could result in a LOW FT3 and be causing your symptoms.  You could have the test done privately through Blue Horizon on the Thyroid UK website .....

    thyroiduk.org.uk/tuk/testin...

    T3 was used back in the 50's I believe to treat depression and was withdrawn once it was realised patients lost weight and so it was abused -  causing heart problems.  Sadly that story has remained to this day.

    Low T3 and sub-clinical heart issues are very prevalent.  There is a book on Amazon and you can look inside - Thyroid and Heart Failure.  It is a book of research papers - most of which appear on PubMed - so you can access them as the book is expensive.  You will see that T3 is mentioned time and time again - as Liothyronine or Triidiothyronine .  It is the first time that Endocrinologists and Cardiologists came together for the purpose of research - yipee.  Someone joining up the dots ....

    I do hope that soon you will have the treatment you deserve.

    There is currently a campaign going on in New York with Thyroid Patients which featured in the Stop The Thyroid Madness Newsletter - which you could access from their website for some useful info which may help your case ....

  • Hi Marz thanks for the reply I mentioned that to my GP but I really do not think he knows very much about the thyroid. I have ordered some T3 online the other day but financially due to illness I don't think I can afford the testing privately beforehand. Really I would have preferred to have a baseline first this time with a fasting sample and with a T3 level. 

    There is a lot of stress in my life at present so some of the articles were quite interesting around cortisol and competitive inhibition reducing the conversion of T4 to T3 with an increased production of reverse T3. Then with the presence of thyroid peroxidase antibodies possibly decreasing production of T3 from MIT and DIT really makes me think I should give it a trial. 

    I used to work nights and on one occasion I had taken a bath when I arrived home. I was shaking with cold the hot water was running still. It was only later that day I realised my leg must have been against the hot tap. Completely unaware of burning my leg but the burn was a perfect match in size and position to where the tap was. It took months to heal had to have it dressed at the local health centre, honey dressings, silver dressing and still have the scar. What I could not get my GP to appreciate is that really you should not be feeling cold whilst you are burning yourself.

    With regards the low T3 and heart problems was that generally bradycardia my pacemaker was for asystole following loop recorder implantation. Usually I rely on my natural heart rhythm the pacemaker only pacing 2.5% of the time. 

    How have you found the T3? If my heart rate drops the pacemaker should kick in but it does not do anything with regards blood pressure and sometimes there is a high degree of variability. There was a Greek paper in one of the Cardiovascular journal around increased blood pressure variability in subclinical hypothyroidism. 

    Thanks again for the reply I was just asking someone from the biochemistry lab about the reference ranges, why there was such a variation with regards TSH and how they define the population for their range which was quite interesting. I will have a look at the research papers on PubMed so thanks for the information.

  • Think the book covers many conditions.  I have saved and bought the book and read the Introduction and the Conclusion - as the scientific detail is way over my head.  However I do enjoy a challenge !

    Regarding testing and results - the machines also vary from lab to lab.

    Check out diogenes on this forum - read his posts and replies ! 

  • Wow.  I'm wondering if you know that functional medicine practitioners want to see TSH in the range 1-2, and the AACE range is 0.3-3.0.  It's highly likely the right amount of T3 would take that depression away without the side-effects of ADs (yes, I tried doxepin and others too).  Aside from the problem of T4->T3 conversion (every patient needs to know FT3 and FT4), my experience has been that I did not feel well until my TSH was down around 0.5; it is absurd for a doctor to see a TSH of 5.5, and say you are "normal".  All this doc is doing, is perpetuating misery.

  • Hi 

    There does seem a very peculiar set of medical opinions in the medical profession that they are perfectly happy to prescribe antidepressants with known side effects such as cardiac toxicity and increased risk of suicide particularly given the pacemaker due to cardiac dysfunction and family history. 

    Then will not offer treatment when showing hypothyroid symptoms given that I am at the top of their range. Especially as a trial may alleviate the depression, stabilise some of the cardiac symptoms and improve my functioning. If it doesn't work then "stop" that is the whole idea behind a "trial" as per NICE Clinical Knowledge Summaries.

    It is very frustrating sometimes I think the general attitude is "pull your socks up" and "put a coat on" without appreciating what effect it has on your work, personal life and then financially. 

    The suggestion being that you can opt into counselling and talk about how it makes you feel to pass out during  the exam for the degree, or on your placement ending up without th career but with the bill. Alternatively my idea admittedly to try on a trial basis and do something to reduce the chances of my passing out. What a novel approach apparently!

    I really did not think the GP knew too much about the thyroid just use TSH and FT4, normal range upper limit 6.0 and do not treat until over 10.0. I did mention the FT3 and reverse T3 though the upshot of the conversation was along the lines of he "didn't know much about the thyroid", "don't be silly dear your fine" and we will "wait and see what happens" but "hopefully you might have forgotten all about it by then or I will". The latter was not actually said but rather unsaid.

    As you can tell decidedly frustrated. I am positive that if the medical profession had a chain of garages anyone taking the car in as it was not running would be informed, "of course it is running after all I checked the oil level"! 

    They would have you sat in the stationary car for the rest of its lifespan waiting for it to miraculously burst to life. After all whether they are expert or not, if it does not run then it does not run.

    Basically what I want in the same way that I want the car to run is to have my body and mind to function appropriately.

  • If you have a doc who wants you to "wait and see" (would he want that for HIS/HER own life?), then it's time to find another doc.  As for anti-depressants: we see the same sort of foolishness in the area of oncology.  Recently heard one alternative doc exclaim, "patent medicines have no place in healthcare".  Why?  Because they are foreign to human biochemistry.

  • The problem is I think a lot of the medical profession are cut from the same cloth. I don't know whether it is a product of the medical training or current practice. When I saw him I had a constant pulsing in one ear such that I could take my pulse rate by sound alone, which is a little annoying when you are trying to sleep. The GP's response was that "he was not worried by it". 

    So generally I think my point is that they were my symptoms and as such it made little difference whether he was worried or not as I was the one living with them. 

    I remember one neurosurgeon who was very good when it came to consent for procedures saying research had shown that patients would only remember about 30% of the consultation and once out the door they would ask their husband / partner what the doctor had said / meant rather than state I don't understand what do you mean? 

    However he made sure they knew what the risks were, how likely they were because it would be the patient who would have to live with the consequences and as such it should be there decision.

    I do wish there were more like that and if there is where are they? When I asked about side effects for antidepressants the answer was to try them and see what happens as they could always change them. Seemed a little ironic when talking about increased risk of suicide and cardiac toxicity but what do I know!

    I think I would probably agree with that about the medicines and biochemistry. I was a bit amused reading an extract in the paper on a 43 year study where they concluded butter is not as bad as previously claimed. One of the GP's (specialised in cardiovascular) were I worked before had sent a memo around saying that people would be better eating butter as not even the fruit flies touched some of the other fats and for good reason (synthetic and highly processed).

    The problem is I have spent too long waiting and there are limits.

  • If you look at the history of oncology, it is gruesome.  It's become clear that doctors trying to scare patients into chemo and radiation as quickly as possible, is a system whose aim is to provide lots of profit for medical corporations.  The situation is somewhat similar in endocrinology, where the established/dictated practices (wait-and-see diagnosis, followed by T4-only and no diagnosis/treatment of environmental/dietary factors) are designed to capitate expense, because there is little money to be made from promoting patient health.  Somewhere, allopathic medicine went off the rails; patient health is no longer the main goal.

  • When it comes to medication there is contempt when it comes to what is viewed as the placebo effect but to my mind a positive effect is just that and without the detrimental effect. 

    Shared decision making with patients would provide a better outcome, patients would probably be less stressed and may make healthier choices (usually they would say greater compliance to treatment). 

    Generally people are not given a choice (informed or otherwise) in many areas and psychologically and physically I think it has a damaging effect. Rather than condemning people as there seems to be a tendency to do for behaviours such as smoking, obesity or alcohol intake they would be better making it easier to make healthy choices. 

    The medical profession does seem to take the attitude that patients should do as they are told or be classed as non compliant and treated accordingly. 

    I found that interesting with regards the Australian doctor, Barry Marshall who identified Helicobacter pylori as a causative organism and linked it to stomach ulcers. The mix of 3 antibiotics used to treat no longer derived the revenue from patent being more than 50 year old so the pharmaceutical companies would lose revenue when compared to someone taking medication over a longer term. I think it was something the pharmaceutical companies tried to suppress. Apparently he was supposed to have swallowed a concoction containing the organism, gave himself ulcers then treated himself with the antibiotics.

    I'm not sure if patient health has ever been a priority it is more about illness, patient compliance and with the added dimension of make sure they can't sue! 

  • i think the big mistake we make, i made, is to think that the thyroid is the problem and try and get a pill.  Now i ask ..why has my thyroid gone bad?!!  And try and tackle that.  We need proper vitamins and minerals for our thyroid to work correctly.  We can have sensitivities to food,that cause our bodies to make antibodies against our own thyroids.  I would be looking into the functional medicine approach, if i were you.  I wish i could go back and use the knowledge i have now, i would not be ill now, if i had.

    We can do nothing about genetics, but we can effect most of what is going on with our bodies.  ..i cannot find my links.  Look up dr isabella wentz's website..also, peter osbourne, no grain, no pain..people are getting well by changing their diets.  

    i would read all Dr. Mark Hyman's info on healing your body and find root causes for illness.  

  • Thanks for the reply.

    The pacemaker was implanted as my heart was stopping, thought to be vasovagal. The medical profession principally cardiology and GP then marked the problem as solved. When I lose consciousness the pacemaker is later checked and I am told everything is fine the pacemaker is working but from my perspective I am still unconscious. 

    Hence the problem is not solved. As such it seems heart rate is only a small part of the problem, it seems to involve the balance between sympathetic and parasympathetic nervous system. The former dominant in the fight and flight response (increased heart rate, blood pressure etc) as in fighting or running from a "sabre tooth tiger" whilst the second seems to dominate in vegetative processes (grazing the buffet table) a lowered heart rate, blood pressure etc). 

    Curiously these effects seem to correspond with hyperthyroidism (dominance of sympathetic nervous system) and hypothyroidism (dominance of parasympathetic nervous system). The thyroid whilst there is hormonal input via hypothalamus and pituitary (Thyrotropin releasing hormone) then thyroid stimulating hormone also has neural inputs. There are sympathetic and parasympathetic neural inputs the latter via the vagal nerve (which corresponds to the reason for my pacemaker implantation). 

    The vagal nerve has afferent and efferent fibres between the brain and multiple organ systems including the stomach and lungs (alternative name is pneumogastric nerve) and the thyroid gland. Nerves allow an organism to respond to changes in environmental conditions a lot faster than hormones do and can modify the functioning of the organ. Growing up if you have a tendency to pass out you are instructed to recognise the triggers and listen to your body in order to take aversive action. That is what I do.

    One of the research papers was around how the neural inputs can modify the functioning of the thyroid gland via  T4 to T3 conversion and deiodination (D1, D2, D3 etc). This makes sense to me in that if I get up in a morning it is a cold day then more energy will be required to maintain a normal body temperature, if there is insufficient resources available the body temperature will end up running low. 

    I take your meaning about the vitamins and minerals as whilst you might decide everything is down to your thyroid and as such you may be deficient in selenium and decide to supplement it may compound the problem if you are deficient in iodine, B6, magnesium or cobalt etc. Overall you are better rather than pinpointing a perceived deficiency to try for a healthy diet overall.

    Sometimes we are not in total control of our environment I know sleep deprivation is a trigger with me. I have worked nights and that does have a detrimental effect but often your financial position limits the choices available. 

    Research has shown links between nightwork, cardiovascular problems and depression, and given the diurnal variation in the release of hormones, lower ambient temperature overnight a greater demand on the thyroid hormones to maintain reactions at a cellular level to maintain body temperature especially as working rather than sleeping. 

    My knowledge is limited but there is at least one important thing that I do understand and that is the former "my knowledge is limited". Once you develop a hypothesis it needs to be tested and refined.

    When you read often some of the policies and medical management seem to be based on a number of "assumptions" based on scanty evidence and little research.

    The body is about balance, homeostasis when there is imbalance between systems and failure to adapt appropriately to the environment problems result.

    I really do not expect a pill is the magic cure but my body tells me there is a puzzle here. I am looking for an answer, not sure of the question but hopefully may learn a little in the process. After all I have the greatest incentive, it is my body and I have to live with it with all the consequences.

     Though I take your message on board and probably should learn to cook one of the problems of living alone, sometimes food becomes purely functional. I will also have a look at the info also.

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