I don't understand my test!

[Mary.M]

This discussion about the thyroid is interesting for me. @Mary.M - you may think that's easier to understand than diabetes, but I'm in a totally different place! With diabetes I regulate my blood sugar levels using insulin - too high = more insulin, too low = more glucose. Simple. However, just be for Christmas last year I was diagnosed with 'sub clinical' hypothyroidisdm. I opted to go on medication, following the advice and recommendations of the good people here and had a follow-up telephone appointment after 3 months on 25mg levothyroxine. I find it hard to say whether the medication relieved any symptoms because many of those symptoms are things I experience in the winter months anyway. The latest test showed that I was 'the upper end of normal', with a level of 4.0. I was told that the upper level of 'normal' was 4.2. The doctor said that they prefer people to have a lower reading, around 2, and I was told that, for now, I should just continue and be re-tested in 3 months. Now, what I am unsure about is should I need a higher dose of levothyroxine to bring that number down? I did try and read up about the other measurements you speak about, like T3 and T4, but couldn't understand the relationship! Far more complicated than diabetes! 😱 🙂

Hi there Northerner, I have somehow given people the idea I think thyroid is simple! not at all, just not sure about how much to blether on a diabetes forum and also I only know about auto-immune hyperthyroid, what I have got, although I know there are multiple other causes of thyroid disorder

while I have certain scientific expertise I have no biology knowledge at all (seeing a frog killed & dissected when I was 14 put me off, do they still do that in schools?) and not much chemistry, so please everyone here forgive any bloopers, this is how it was explained by my wonderful GP

thyroid disorders are systemic illnesses, meaning they affect every single cell in the body because the thyroid is instrumental in controlling the energy to function how they are meant to, this is SERIOUS STUFF

energy requirements are assessed by the hypothalamus which sends messages to the pituitary to push out Thyroid Stimulating Hormone (TSH) according to how much energy is needed

TSH messengers are received by receptors in the thyroid gland, and molecules of thyroxine (T4) are pushed out according to how much TSH has been sent, so the more energy the brain decides is needed, the more T4 is issued into the bloodstream

this floats about as 'free T4' (FT4) and by some complicated chemical process involving iodine, converts into molecules of triiodothyronine (T3) which the body cells use for energy, cells can't absorb T4 direct from the blood reservoir

there's another distinction between 'free' & 'bound' T3 & T4 which is beyond my comprehension but I do know that FT3/FT4 is the more informative lab measure

in my illness, Graves Disease, for some reason best known to itself my immune system produces TSI (Thyroid Stimulating Antiglobulin) antibodies which mimic TSH to bash my thyroid, these antibodies are received by the same thyroid TSH receptors and cause my poor blameless thyroid to believe it should kick out more T4, so of course it does, my TSH goes down to zero because I my brain knows I have too much T4 but can't stop the antibodies, and I go hyper and start burning energy like a nuclear reactor

the 'cure' is taking an antithyroid drug to oppose the antibodies, and the amount of drug needed depends on how many antibodies, the NHS isn't helpful because when I asked for an antibody test I got told it wasn't necessary as 'obviously' I have Graves so I rely on T4 testing and adjust my drugs accordingly, more if I'm up, less if I'm down, same as you do with glucose & insulin

so with hypothyroid, whatever the cause, not enough T4 is produced, leading to not enough T3 availability for body cells, and you feel knackered, cold etc and your brain starts pushing out TSH to try to kick-start your thyroid

I know about this from being overmedicated and it's horrible, I got over it by cutting my drugs but if you have autoimmune hypothyroid then there will be antithyroid antibodies around that get in the way

the remedy is to give your body additional T4 in the form of Levothyroxine which is ok so long as your body is converting T4 to T3, some people don't

which is why TheClockworkDodo wants Lyothyronine, a form of T3 to skip the conversion step but as we have seen, the NHS isn't co-operating

I am guessing the numbers you have given around the 4 mark are TSH, my lab's reference range (which means 'normal' in medical-speak but again as we have seen, doesn't mean 'feeling well') is 0.27-4.2

if you are clocking TSH of 4 it means your thyroid is struggling to produce enough energy for your needs and your brain is racking up TSH to try to get more energy into your cells and in fact newer research suggests the lab range should be 0.3-3, if this were recognised then you would be classed as hypothyroid

the medics are obsessed with TSH as a diagnostic, if I were you I'd want to know what my FT3 & FT4 levels were, in my lab 'normal' is 3.2-6.8 FT3 and 12-22 FT4, to give you an idea I was FT4 90 when diagnosed 6 years ago and can stay roughly round the 22 mark by managing my drugs on a steadily reducing basis, I am down to a quarter of the smallest pill they make

the treatment we get is all down to the numbers and, IMHO, interpretation is far too set in concrete and doesn't recognise individuality

hope this helps, I am lucky to have a background in maths so numbers are easy for me, and in IT so I am a very fast typist!

all best to everyone here for a peaceful weekend 😉

 

[Mary.M]

Northerner - I was started on 25mcgr of Levothyroxine too, by my ultra cautions GP, but it did touch the sides. If your TSH has inceased (as opposed to decreased), you are almost certainly under-medicated, in my opinion. I would want an increase in the medication now, not in several more months, but I'm impatient.

It takes a while to sort out thyroids, as I am learning to my frustration, and sadly many GPs just focus on the TSH level. A bit like diabetes, they know about thyroid, but not too often at an in-depth level, and further frustrating is that most of our Endos are diabetes specialists, as opposed to being keen on thyroid stuff.

When you were investigated, did they test for both lots of anti-bodies too, and having at least one auto-immune condition, you're more likely to pick up more along the way.

Honestly, the health unlocked forum I suggested earlier in this thread is fabulous and I owe them such a lot in terms of my knowledge and journey to date.

Good luck with it all.

gosh AndBreathe you are so right! TSH, antibodies, endos being diabetes specialists … been there, done that …. keep hanging in there

 

[Northerner]

Thank you @AndBreathe and @Mary.M, your responses have certainly increased my understanding of the mechanisms. I did ask my GP about the T3 and T4 but he said those tests were unnecessary because I was on levothyroxine - I didn't really understand. He did quiz me about various symptoms - tiredness, weight gain, constipation - but apart from the tiredness I haven't experienced any of them. My weight has been virtually static for months, and the tiredness is something I have always suffered from in the winter months, so it would be difficult to isolate any additional problem that might be contributing. Now that Spring is here I have much more energy and feel much brighter 🙂 We'll see - I will be better informed when I am next tested 🙂

 

[SB2015]

Thanks @Mary.M , I now have amuch better understanding of my thyroid test results. These are just the usual precautionary ones for those with D, in the same way they are checking, who has thyroid problems, fo D. Good that they keep an eye on us, and that we can access such expertise on here.
Thanks

 

[AndBreathe]

Thank you @AndBreathe and @Mary.M, your responses have certainly increased my understanding of the mechanisms. I did ask my GP about the T3 and T4 but he said those tests were unnecessary because I was on levothyroxine - I didn't really understand. He did quiz me about various symptoms - tiredness, weight gain, constipation - but apart from the tiredness I haven't experienced any of them. My weight has been virtually static for months, and the tiredness is something I have always suffered from in the winter months, so it would be difficult to isolate any additional problem that might be contributing. Now that Spring is here I have much more energy and feel much brighter 🙂 We'll see - I will be better informed when I am next tested 🙂

Northerner, TSH is a pituitary hormone that signals the thyroid to do its thing. It gives zero indication of how well thatthyroid actually does that thing.

T4 is useful,to know, but it's not a very active thyroid hormone either, by comparison to T3, into which it should convert, but in those with hypothyroidism it sometimes/often doesn't happen. Without decent T3 levels, the individual will usually not be entirely well.

I hope the foregoing isn't patronising you, but I also hope it illustrates how important it is to know the breakdown.

 

[Northerner]

I hope the foregoing isn't patronising you, but I also hope it illustrates how important it is to know the breakdown.

Not patronising at all 🙂

 

[Mary.M]

I don't understand why Northerner's GP thinks testing FT3/4 is unnecessary, just because he's on Levothyroxine doesn't mean he's on the right dose in my book or that it's doing its job and I couldn't agree more about relying on TSH as a diagnostic

as for treating by symptoms, I can be well OTT in both FT3&4 and no symptoms that I know about, I need to get into the FT4 30's before I notice anything but that doesn't mean it's doing me any good, thyroid also controls stuff like calcium absorption and high levels contribute to osteoporosis

however, it's noticeable that I can be a bit over in FT4 and still in range in FT3, confirming what AndBreathe has pointed out about the importance of T3 and also a point made previously about personal involvement, the more you know about what's going on, the better informed you are about why you feel the way you do and how to feel better

I have to say all this thyroid discussion has certainly diverted my ability to worry about my glucose readings! better go and blow some carbs off in the garden, the grass needs cutting again already 😎

 

[TheClockworkDodo]

Thanks Mary and AndBreathe for all the thryoid info, which I will read when my brain's a bit more up to it!

It's not that I don't want to be involved in my health care or anything, AndBreathe - it's just that I have to avoid things like lists of symptoms or lists of side effects or anything that will give me nightmares, which can make it difficult to access some of the other info. I do want.

One thing I did find was a list of ingredients of all the makes of Levothyroxine available in the UK and the one I tried was the ONLY one which didn't contain ingredients I'd be allergic to (other than one only available on private prescription), which was Wockhardt. The side effects were severe enough I lasted 3 days on it. GP persuaded me to give it another try, against my better judgement, and I lasted another 3 days. There is no way anyone is going to persuade me to try it again.

I didn't have any thryoid symptoms at all before I tried the Levothyroxine, and now I have several - at no point did I feel any better at all. It's as if taking it woke up my body to the fact that my thyroid's under attack. Taking the Liothryonine didn't make me feel any better either, but at least it didn't have any side effects, and stopping taking it made me feel slightly worse. It's quite likely that I should be on a higher dose of that (because of my intolerances I'm on the smallest we could find, 20mcg), but first I have to persuade a GP to put it back on my prescription ...

 

[TheClockworkDodo]

@Mary.M - sorry we have detoured so much from the original topic of your thread! Thank you for seeing it as a diversion 🙂

Mowing the lawn is probably the best possible way to lower your blood glucose levels!

 

[Mary.M]

@Mary.M - sorry we have detoured so much from the original topic of your thread! Thank you for seeing it as a diversion 🙂

Mowing the lawn is probably the best possible way to lower your blood glucose levels!

okaaay! clearly what I need to do on Thurs is eat nothing, walk the dog & mow the lawn before I get tested!