TSH -DOES IT MATTER A LITTLE?😕confused.

[Rmichelle]

Hi there again just pondering on TSH as i know that it does not play a part on how we feel and it tells us nothing when tsh is tested alone. but i have been reading some articles on Endocrine patient forum-'i know i have cheated on TUK"lol😆 but why is it people still say that if there tsh is not at a certain level they don't feel well regardless of where there frees are? I do believe it has more to do with the frees being in the upper range but why would we aim for a tsh level of around 1? Is tsh there to say we are over or under medicated? Just trying to understand why people say about their tsh when it does not have a impact on how we feel? Big thanks again!!.xx🌟🌟

[Nanaedake]

Most doctors only look at TSH for hypothyroid patients, and to adjust dose. With hyperthyroid patients they also check FT3.There seems to be confusion amongst doctors and patients about what to test and when. Hopefully in 2019 when NICE produce their treatment protocols for thyroid patients it will be clearer but I expect there will still be shades of grey. In the meantime if you have symptoms then bear in mind they could be caused by a range of factors, not necessarily thyroid hormones so insist doctors investigate thoroughly and don't leave you suffering.

But whatever condition is diagnosed, it should be evidence based. Too many patients here get wooly 'anxiety condition' label and the actual underlying conditions may be missed causing unnecessary misery.

[Rmichelle in reply to Nanaedake]

Thankyou lets hope things do change in 2019 but its still along time off-even hyper patients dont get ft3 tested as if your tsh is in range the labs dont bother-ive had to get my thyroid bloods done at my midlands hospital where my endo is based as he was fed up too with my local hospital not doing them. Just wandering why tsh is important when it had no bearing on how you feel? Dont get it at all at the moment.xx

[diogenes Remembering]

TSH is merely an indirect statement by the pituitary gland in the brain as to what the levels of thyroid hormone are in blood for a particular person. A certain TSH in one patient will not have the same implications for another.This depends on the individual relation between pituitary and thyroid unique to each of us. It follows then that when we talk in general about thyroid hormone levels, we can only talk in averages. So making statements about TSH, FT4 and FT3 being best in certain areas is only an average and may not apply to the individual person. All has to be done by trial and error, not relying absolutely on recommendations for the average.

[Rmichelle in reply to diogenes]

Thankyou for explaining it-i think it is trail and error and finding where is best for the individual-you cant say because someone is in range well they must feel well then? I it is all very complicated!! 😊😊

[waveylines]

My endocrinologist says its the actual thyroid hormone levels that needs watching with hypothyrioidism where bloods are concerned.....as long as these remain in range there is no danger to causing harm to the body by over medicating. Of course blood levels should be taken in context to how you are feeling and signs or symptoms.....something that many doctors do not do anymore...lol.

There has been much debate over the TSH and how relevant it is to treating hypothyroidism......yet there is no clear evidential line of proof that a supressed TSH (below range) will cause damage if the thyroid homones are in range. It is a hot potato in the world of endocrinology. Which does beg the question why treatment at GP level increasingly focuses on testing the TSH on its own for levels of medication.

To be honest I think this has become linked more to politics/dogma then good medical practise and it is the patients who are suffering. I have two friends whose GPs are hooked on the TSH being kept in range and both feel ill and have clear symptoms/signs of hypothyroidism on their current level of medication. Makes me feel so angry to see people I care about caught in this nonsense trap of treatment by the TSH...

Apologies for my rant!!!

[Hidden in reply to waveylines]

My GP tests TSH and FT4

[Rmichelle in reply to Hidden]

Yes my endo tests all of them but the labs will do only tsh if requested by gp and not endo.x

[Hidden in reply to Rmichelle]

Yes my Endo will do all but GP’s are at the mercy of the labs and their guidelines

[Rmichelle in reply to waveylines]

Yes thankyou it is not a one size fits all is it, just wandered what matters the most tsh or frees? I have always been told its the frees that count on making us feel well when some people say it is the tsh, i just thought i felt better when my tsh was around the 2.25 mark but my frees were not coming up though from the bottom level in range mark-when they need to be in the upper range-i was diagnosed hyper in july last year and then went hypo in december and now im "normal" so the endo thinks-when im not!! All very confusing stuff.xx😊

[waveylines]

Thats very hard indeed!! when the endo says your 'normal' now what does he/she mean? As you quite rightly say we are all individuals.

[Rmichelle in reply to waveylines]

How many times do we hear from other firum users that gp or endo says im clinically in range and im pleased to say"you are now normal" when we are ill still and left in the creek without a paddle!! One size fits all-nah!☺

[waveylines]

Absolutely -thats why its laways good to get a copy of the actual test results as you could be coasting along the bottom of the range for your thyroid hormones but the GP says its normal becuase its in range. Many GPs knowledge is not great on hypothyroidism.

[Rmichelle in reply to waveylines]

I always get a printout so im not fobbed off-lets see what the great who knows best in the white coat says, my next endo appt on 10th april-blah blah.😊😊

[waveylines]

Very wise! Sort of gathering your not impressed with your endo! Lol....

[Rmichelle in reply to waveylines]

Doesn't take a crystal ball does it to guess my thoughts- im on my 2nd endo and probably moving towards a 3rd. Lol😊😊 nite nite😴

[SilverAvocado]

I think if you're asking "why do people use a certain term?", the answer will be that it's what they're used to, or how it's been explained to them in the past.

'Having a TSH of 1', is another way of saying having freeT4 and freeT3 at whatever level. If you're talking about yourself, and you've been monitoring your condition for several years, you'll be aware of your own balance points.

Looking at lots of people's blood test results on this forum, I've seen that TSH values in relation to the frees varies massively. Some people seem to have a very sensitive TSH, and it will go sky high even though their freeT4 and freeT3 aren't that low. Others will have rock bottom freeT4 and freeT3, but their TSH stubbornly stays too low to get diagnosed as hypo.

I wouldn't be surprised if there are people in this world who feel good with a TSH of 1. They probably have relatively high freeT4 and freeT3 with that number. I doubt they are at the top of the range. But some people feel better with them a bit lower in range!

[Rmichelle in reply to SilverAvocado]

Thankyou i am fairly new to this still since july-i was just confused really by some prople saying that tsh has no impact on how you feel as its the frees that make you feel ill etc if they are not tip top and others state its the tsh makes them feel rubbish if its below a certain number!!😕 its all confusing-i have learnt so much from this site since last july but tsh is mind boggling to me😊

[SilverAvocado in reply to Rmichelle]

Hehe, I think your situation with having Grave's is a lot more complicated, too. You have to grapple with being both Hyper and Hypo. Nearly everything on the forum is about Hashimoto's.

FreeT3, even though the best bit of the thyroid panel, is still just a clue about what's going on in the body. TSH is a different kind of clue. Generally less good, but some people might have found it the only one they've got, or its worked well for them.

A few other things I've noticed, I'm pretty sure anecdotally that some people will feel well with almost any freeT3 in range, and almost any TSH. I think this is the large proportion of people who are fine on Levo only. They are more efficient at using the hormone, you might say insensitive. Those of us who have a harder time getting better need things to be just perfect, and are much more inefficient /sensitive. There are a lot more ppl in the latter category on this forum!

I've also noticed many people say they are fine, and suffer in silence, when really they aren't very well. Or people say they are expert on their best dose, but they actually haven't looked into it very much!

[Rmichelle in reply to SilverAvocado]

Thankyou yes i think you are right there it is more difficult as endo suspects graves but will not test tsi for it as he says "everyone has it whos ever been hyper" umm err. But i do have hashis confirmed in tpo and scan. It would be so nice if it was bloody easy to know in the range where we feel good at but nothing is that straightforward but i know i want to come of this dose with a view to come off it😨

[SilverAvocado in reply to Rmichelle]

I didn't realise it was even more difficult than Grave's Poor you, sounds like a nightmare! I hope you get a bit of clarity soon.

I think it's a lot easier once you know you've got one rabbit hole to go down with reading, etc!