After years of GP 'treating' me according to TSH results alone, going up and down levo doses from 0 to 175mg but never feeling better (terrible fatigue, 2 stone weight gain, joint/muscle pain, hair loss, swollen ankles, dry skin, depression, brain fog etc) years after a previous GP tested me positive for antibodies and a thyroid nodule, mother with same plus TED, pernicious anaemia, osteoporosis etc, I referred myself to a private endo as GP said it was a waste of time and money.....
Endo writing to my GP instructing him to do following blood tests: bone, renal and liver profiles, vit D, serum cortisol, coeliac/anti-nuclear anti-bodies, magnesium, ESR (NHS, so I won't have to pay).
Endo did following tests privately, results below which I wonder if anyone can comment on:
Total T3: 1.3 (1.3 - 3.1)
TSH: 1.57 (0.27 - 4.2).
Free T4: 18.3 (12-22)
I will post other results when I have them but if anyone has any thoughts on the above, I would be really grateful. The endo was great, by the way so, whatever else, I feel like somebody is looking out for me properly, even if it is costing me a great deal. My instinct is that levo does nothing for me as I never feel any different on any dose, and TSH levels fly up and down randomly. I've felt ill for years now and worried by family history of auto-immune problems, yet the GP is unmoved and I feel like a moaning nuisance! (If relevant, I'm late 40's, hypo for last 10 years although thyroid probs first started as 'grossly hyper' 20 years ago, treated with carbimazole). So confused and tired of not understanding, being fobbed off by GP. Feel like I'm 80! Help..... ,!
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Alternating between 150 and 175 every other day. Gone steadily up and down over past year while TSH went from 3 to 0 something then 2 then 1.3. No pattern! Normal results?
>Gone steadily up and down over past year while TSH went from 3 to 0 something then 2 then 1.3. No pattern!
Some fluctuation is to be expected. The TSH level does not remain constant, it changes according to the time of day. In order to maximise the value of your TSH readings, each blood test should be taken at the same time of day. I suggest going at about 9am, because TSH levels are higher in the morning than in the afternoon.
How did you feel when your TSH was 0?
Any idea when you'll get all the other tests done? Will be interested in the results.
>Total T3: 1.3 (1.3 - 3.1)
TSH: 1.57 (0.27 - 4.2).
Free T4: 18.3 (12-22)
Your total T3 is right at the bottom of the range, but total T3 is difficult to comment on. Free T3 is a superior test but not all labs offer it, probably only about 50%. Total T3 is affected by the levels of the protein which bind T3, and this in turn is affected by many other factors. Non-thyroidal illnesses also commonly reduce T3.
Your TSH and free T4 both look OK, but some patients on levothyroxine feel better when their T4 is right at the top of the range or slightly above, and their TSH is slightly lower than yours - perhaps around 0.5 to 1. Perhaps you've been in this position before?
It might not be wise to suggest too much until your other test results come back, but I'm wondering whether your endo will consider levothyroxine (T4) + liothyronine (T3) treatment. Most studies have not shown an advantage for T4 + T3 treatment versus T4 alone, but some have shown an advantage. It seems that there's a subset of patients who feel better on the T4 + T3 combination. Since you report that you never felt well on levothyroxine at any dose, it's possible that you're one of the people who need the combination. Armour Thyroid is one way of delivering a combination of T4 and T3. It's not a licensed product in the UK however so levothyroxine + liothyronine is usually the next option. Giving T3 and T4 as separate tablets is very flexible because it allows the dose of both medicines to be adjusted separately - something you can't do with Armour. A small number of patients take T3 alone.
Any major illness can reduce thyroid hormone levels eg. serious infections, any illness where the patient stops eating etc. This is why thyroid function tests should rarely be performed on patients admitted to hospital, unless the reason for admission is thyroid-related. TFTs performed in this situation are often very misleading.
During a serious illness, the body tries to slow down its metabolism because little energy is available. The pituitary gland release less TSH and so TSH levels drop. T4 and T3 also usually drop in response to reduced TSH. Although this is the usual pattern, almost any combination of TFTs can be seen in the acutely unwell patient.
When I look at the T3 I was shocked at first until I realised that it was a total T3 figure. It is so different from the free T3 ranges, and not so informative. If you can add in to that list the free T3 rather than the total T3 it would be very useful.
Look forward to seeing your other results, as well.
>If you can add in to that list the free T3 rather than the total T3 it would be very useful.
I suspect they didn't do it. There's been a gradual move towards more labs measuring fT3 instead of tT3....but many do not yet have the equipment/resources to measure fT3.
I'm a biomedical scientist and have been measuring FT3 for decades. It is not difficult, but most GPs do not understand endocrinology and, unfortunately, care even less. It's not their life which is compromised.
The labs in my area do not offer fT3 - they do fT4 but only tT3. I didn't think measuring fT3 was especially complicated, but I did think they needed different equipment. If not, what is the reason?
If I remember right, there is one lab which does FT3 for one hospital it serves and TT3 for the other one. I assumed it was what the endos/biochemists agreed.
I've been retired now for 5 years, but I never knew what the individual costs were for the tests, as that was out of my 'area' of expertise - I was just the lowly lab rat that ran the testing. Any test that is run just the once a week is expensive - tests like your full blood count or urea & electrolytes are cheap & cheerful and are done as soon as they arrive in the labs.
The same machine that does all the other thyroid tests does the FT3 as well. They come in 'kit' form from the company that produces them i.e. with all the control solutions etc to ensure validity, as well as all the neccessities to carry out patient tests. A kit for TSH, a kit for TT4, a kit for FT4 etc etc
I worked in London, so I'm not sure about what is offered in other areas of the UK. These tests are very expensive, which is why samples are collected and stored, to be run once a week, rather than on a daily basis - thus you need only one set of controls etc for a large run, and you must have the controls or the test run cannot be validated.
This cost is then, I think, the problem with GPs - they just will not shell out for the tests. I can't see the point of doing all the other tests - the FT3 is the metabolite which is active at tissue level and that is the one that matters.
Most GPs are very poor diagnosticians these days. Back when there were no 'confirmatory' lab tests, docs had to listen to their patients symptoms, they prescribed dessicated thyroid as treatment and patients improved. When the TSH and synthetic thyroid came along, the former regime went out of the window. Big Pharma could make loadsa money off Levo! Since then, the diagnosis TATT (tired all the time) began to be seen more and more . . . . . .
>The same machine that does all the other thyroid tests does the FT3 as well.
Oh I see. I wasn't aware of that. It seems odd that laboratories would continue to measure total instead of free thyroid hormones. Do you know the reason? Is the kit/control more expensive?
>This cost is then, I think, the problem with GPs - they just will not shell out for the tests.
'TFTs' are requested frequently, but GPs do not always specify precisely which tests they want. In cases where specific tests are requested, it seems to me that the choice of tests is influenced both by the laboratory and by conventional medical teaching, but cost might also be an issue. Also, I do know some labs offer different sets of tests (when 'TFTs' are requested) based on the clinical information provided. Others amend the profile of tests offered according to the TSH result.
>Any test that is run just the once a week is expensive
According to the Association of Clinical Biochemistry (2006), 10 million tests are being requested annually in the UK at an approximate cost of £30 million. Apparently, some labs are finding it difficult to cope with the increased number of requests.
>I can't see the point of doing all the other tests - the FT3 is the metabolite which is active at tissue level and that is the one that matters.
Tests for TSH, fT3, fT4 and thyroid autoantibodies all have value. The value of each individual test or combination depends on the circumstances. None of the tests in isolation are adequate to make a diagnosis. TSH alone may be an appropriate screening tool when thyroid disease is possible but unlikely. A combination of tests is initially needed for any patient who presents with probable thyroid dysfunction.
During the early stages of thyroid gland failure (for example due to autoimmune disease), TSH is frequently the only test to reveal an abnormal result. fT4 and fT3 are usually still within the normal range. Only once the disease has progressed somewhat do the levels of thyroid hormones go down. This is because in early stage disease, the increased levels of TSH are successful in bringing the concentration of thyroid hormones back into the normal range (compensated hypothyroidism). Measuring levels of free hormones but not TSH could lead to a delay in diagnosis. TSH levels are also needed to distinguish between primary thyroid disease, pituitary disease, and sick euthyroid syndrome.
>Most GPs are very poor diagnosticians these days. Back when there were no 'confirmatory' lab tests, docs had to listen to their patients symptoms.
Lab tests are often useful, but I'm also concerned that an over reliance on such testing has led to a deterioration in other skills, particularly physical examination. I appreciate that GPs usually have little time but I wonder whether the reduced tendency to examine patients properly has actually led to loss of this skill.... and not everything shows up on a blood test! I distinctly remember going to the doctor feeling very unwell a couple of years ago - no examination of any kind was performed, not even pulse/BP. In some cases, lack of diagnostic confidence leads to overprescribing of medication, particularly antibiotics.
>Big Pharma could make loadsa money off Levo!
Perhaps they did, and continue to do so in some countries, but this doesn't explain the current situation in the UK. Levothyroxine is predominantly sold by generics manufacturers (except for Mercury's Eltroxin which is also cheap). Big pharmaceutical companies do not sell or advertise levothyroxine in our country. Generics companies do not advertise levothyroxine at all.
Treatment based on T3 or dessicated thyroid is unlikely to really 'take off' in the UK unless the British Thyroid Association changes its stance. I think this would require a major clinical trial, possibly two. Most trials performed so far have not shown an advantage for T3/T4 combination therapy over T4 alone. I do wish doctors would keep more of an open mind though, and assess patient's individual response to treatment. I think this is one of the benefits of going private. The consultant may be the same but you get the time and consideration which makes all the difference.
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