Why is there a range for TSH ETC. : I was... - Thyroid UK

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Why is there a range for TSH ETC.

mikkymouse profile image
mikkymouse

I was wondering why they give a range for levels if all of you that have answered me said I need to be at 1 or below in my TSH? Then I’m told we are all different. The only time I was that low, I felt awful and my hair was falling out like crazy. One day I just crashed. Five years later I’m not any better. (TSH is 3.61). Isn’t it at all possible to feel better at a higher level than normal keeping in mind we ARE all different. Has anyone experienced this? Any thoughts or opinions? Thanks.

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36 Replies

Of course it's possible. But, the TSH isn't that important, anyway. It's the FT3 the most important number. What was your FT3 when your TSH was 1?

If you have a decent level of T3, the active hormone, with a TSH of over 3, then you could feel very well. The problem could be elsewhere causing the TSH to be high. But, even though we're all different, we have to generalise in our general replies, and the fact is, most hypos feel better with their TSH under 1 because that will mean their FT3 is reasonably high.

The TSH itself doesn't make you feel anything, and doesn't cause any sort of symptoms. It is not responsible for hair falling out. :)

Yeah I get what you’re saying but I guess TSH seems pretty universal about (0.35-5) and once you start treatment it’s not really relevant. One could say around 1 for those on Levothyroxine and forget it altogether if you take Liothyronine because it’ll be non existent then.

Just remember that within your treatment you really just need your FT4/3 result. That result really is individual to us all. For example some posters have stated that they feel really unwell with a FT3 of 4.8 (3.5-6.5) and some of the responses might be ‘increase T3’ and yet for me my highest FT3 without supplementing T3 was 3.9 and now that I’ve started supplementing with T3 my FT3 has only risen to 4.8 and yet I feel bloody marvellous! Atm I’ve found my ‘sweet spot’ that’s what you beed to look for and it takes time.

You have to be patient. Get your results every 6-8wks and only change yo or down after you know your numbers. You will find what works for you and then like a recipe you’ll no longer have to refer to your notes you’ll just now your body, know your symtoms. You’ll get there mikkymouse 🤗

mikkymouse profile image
mikkymouse in reply to NWA6

Thanks Paula

You make it easy to understand. What I don’t get is why they only test our TSH and not the 3 and 4. Here too they hate to do it quite often cancel the test. Knowing how it is I wouldn’t be surprised if it had something to do with money. lol.

Let me get this straight. Are you saying that for you just a small increase in T3 made all the difference. Did you also take aLevo? I’m quitting Synthroid and going on Thyroid by Erfa. Do you think this may work. The dose will be a lot smaller though. Around half.

You have given me hope which is hard to have at times.

Sheila

NWA6 profile image
NWA6 in reply to mikkymouse

Shelia I can’t answer why the drs think the TSH test is the be all and end all to managing Health 😣 it’s a topic that could be discussed all night 😩 But it is the reason why many of us do private testing. Over here we have Thriva, Medichecks, Blue Horizon and many more who post the the finger prick tests to your door and you have results within 24hrs, that’s why so many can self medicate with ease 😀

Yes, just a small amount of T3 added to my Levo has brought me back to full health after 10yrs. I wasn’t ill for all of those 10yrs, sometimes I managed very well but never stable and always fighting wit my GP to increase my Levo despite ‘in range’ TSH. Finally in 2014 I started reading more about Different testing, I knew Hashimotos was the cause but why was I always below par? I got my first T3 test but neither me nor the doc knew the significance of it BUT I always insisted on it and so fast forward 5yrs till earlier this year and I had 5 recordings of TSH, FT4 and FT3. It clearly showed that it didn’t matter how much T4 I took, I was a poor convertor and my T3, although only just in range, it never rose. So I had a DIO2 test, it showed that I was ‘homozygous’ this means that I have a polymorphism, usually handed down from one parent, this means that I *may* have more difficulty converting T4 to T3. With my Thyriod results I think this was a slam dunk. I’d found my problem.

I was on 175mcg Levothroxine. I brought that down to 150x2 and 125mcg x5 per week and at first added 15mcg T3 per day but then increased it to 20mcg.

My TSH is now suppressed but my T3 isn’t even half way throug range so if I needed to I could up my dose. Whereas my Drs are wetting their pants that I’m over medicated because they quite simply do not have a good enough knowledge of how this all works.

So synthriod is T4/Levothyroxine. How long have you been on it? From your previous post, you are atm under medicated. You may never have felt well in synthrioid because you’ve never been given a high enough dose? Or like me, when you try to increase your dose to relieve symtoms you just end up feeling worse/sick. So this is why it’s very important to gain a ful Thyriod history. Once you have a history over 3/6mths then you can begin to make informed choices. Changing meds might work but I wouldn’t be inclined to do so unless I had a good blood history.

There are certainly many more knowledgeable people on this forum than me, I’m just like giving out warm welcomes, making the tea, flowers and biscuits. A bit useless really as I don’t have the knowledge to help people get well but I just know that sometimes I just needed someone to say hey, I hear ya.

I think you’re well on your way now to understanding your own condition. You’ll think of new questions and possibilities all the time now. You’ll find your ‘sweet spot’ 🤗

mikkymouse profile image
mikkymouse in reply to NWA6

Hi again Paula

I hope it isn’t too late to answer. I have to keep in mind the time diff. I just want to let you know that I have had lots of answers but some of it is just so overwhelming. I think some people just like to show off by throwing all kinds of numbers and stats etc at me but I don’t get impressed. I get confused. I want your kind of responses. A bit of personal stuff and what is happening to you now. Also it’s fun for me to learn a bit about a person like how many kids where they live their bank account number etc. Lol. I like and need happy ending stories.

Put the kettle on. I’ll be there in September. (I hope).

Sheila 😸

Jenny583 profile image
Jenny583 in reply to mikkymouse

My bank account number is 123789456999000.

Hope this helps...

Jenny xx

mikkymouse profile image
mikkymouse in reply to Jenny583

Thanks so much Jenny. A large deposit will be made to your account tomorrow when the banks open lol.

Xx

Sheila

Jenny583 profile image
Jenny583 in reply to mikkymouse

Gee thanks! Mikkymouse!

Had I known you would be so generous - I would have given you my actual real bank account number....

mikkymouse profile image
mikkymouse in reply to Jenny583

It’s not too late lol

NWA6 profile image
NWA6 in reply to mikkymouse

Sorry Shelia. I didn’t see this 😬 Too many posts 🤗

Treepie profile image
Treepie in reply to mikkymouse

Have a look at the Thyroid Patient Advocacy site ( a UK site) and scroll down for the cartoon “Our holy miracle of the Infallible TSH test “ .

In the UK each test costs about £1 so not sure that cost is the main reason .

humanbean profile image
humanbean in reply to Treepie

The link for that video is

youtube.com/watch?v=tOb2POQ...

mikkymouse profile image
mikkymouse in reply to humanbean

Thank you so much . I love it!! I would love for my GP to see it. They all should be made to watch it. So it is saying to increase it until you basically hit the sweet spot?

helvella profile image
helvellaAdministrator

One of the reasons is that the TSH range (e.g. 0.4 to 4.2 or something like that) is for healthy people.

Even then, healthy people usually have a TSH quite close to 1 (we are all different and values like 1.2 or 1.4 might be perfectly OK for some people).

If you are taking levothyroxine only, then the TSH will be low in range or below range when you are taking enough levothyroxine to get your T4 and T3 levels up sufficiently.

If you are taking T3 at all, then TSH will always be low or very low.

In healthy people, TSH can rise (and fall) over time. This is one reason that people with TSH high in range, or a bit over range will be told to have another test in a few weeks. (We can strongly disagree with exactly how this is done and the numbers, but the idea has some merit.)

If you are taking levothyroxine you cannot "recover" from inadequate thyroid hormone by increasing your own production.

SlowDragon profile image
SlowDragonAdministrator

Primarily TSH is for looking at patients BEFORE starting on any Levothyroxine

Once on Levothyroxine (or any NDT or T3) TSH is frequently very unreliable. Testing of FT4 and FT3 are always essential

When hypothyroid low vitamin levels are extremely common. Testing and frequently supplementing required to maintain optimal levels of vitamins

Thanks for your input.

Yes, it is possible of course, and when we say "1" that is because we are all using the most standard range used here where 1 is what we understand we should be at or near. My 13 year old daughter for example has a low TSH at around 1 as you might expect in this range. Although TSH as a hormone may have other symptoms if it's high or low, the point in this regard is that it is pushing away trying to get T4, which in turn may or may not have other symptoms itself but again in this regard it's only relevant as it's needed to get turned into T3, which is the relevant hormone! So who cares about TSH and T4 - it's the T3 that matters. And yes, it is likely that the steady state for each individual's body is different - the body has to balance everything up so a fat overweight unfit middle-aged woman with lots of body trauma like myself is likely to have a different balance than someone with a different body and different lifestyle - my body is probably working harder to keep everything OK.

But that said, I do think that each hormone is likely to have side-effects, or shall we just say effects, and it would probably be ideal if each hormone was at close to the "ideal" range so that we would not suffer from these effects. But jigging around with one hormone is likely to throw others out of kilter. My doctor, who is quite good, has decided that my hormone levels are ok enough to medicate based on symptoms alone, even though my TSH is 2 and he'd like it below 1.

Good luck!

Helen

Hey Helen. Another “brave “ souls who doesn’t care if we know your name or where you live! I have to admit that being a very open outgoing person all the secrecy drives me nuts! I mean what does it matter if someone knows your name. Not the last one of course. (I guess) unless you have an 👁 in the middle of your forehead who cares what you look like. Maybe it’s bring English. We and lots of other Canadians we know find them a bit secretive. I can say this cause my relatives all live there. Dad was from Liverpool as were three grandparents and my brother in-law. Not trying to be nasty or anything though. People can be whatever way they want.

So you have a 13 year old daughter eh. I have two grandsons that age six days apart. Double teenage whammy lol. So far they still love us and their parents but that will end as soon as they realize that we don’t know anything lol.

Wow. A dr willing to medicate in symptoms alone!! That is rare. Mine said my numbers are good therefore I am good even though he knows I’m not.

You are one of the people that have given me good info today. Bombarding me with all kinds of numbers isn’t helpful at all. Thanks.

What med are on or going on? I have been in Synthroid for over ten years. Switched today to Thyroid by Erfa. The reason is b I wanted T3. Hope it works. I have been and still am so sick for the last five years and I’m sick of it!

By the way is it nice where you live? Weather I mean. Where do you live if you don’t mind me asking. I’m in Vancouver and my name is Sheila and I am an old bag. 71 next month. I say I’m 70 on the outside and 40 on the inside. I feel 100 though physically lol.

Sheila

Just an aside really but I think the fact that we can be anonymous is a positive thing. It encourages people to join who are a bit nervous about talking about their problems. It can also encourage you to ask any personal questions that could make your granny blush but granny could also be in this forum but wouldn't know who you are-well Thyroid does run in families. Would you be comfortable taking about your GP knowing he could also be on here or knows someone who is? It's more about thinking of the patients who for varying reasons don't want to be 'known'. I spent a couple of years reading before I was brave enough to ask a question because I thought it might be a stupid one but then realised two things-no one knows me and secondly no question is stupid if I don't know the answer. So being anonymous can be more of a positive than a negative.

Oh come on ladies. Think about it. If you post that your name is Maryjane do you really think that the world knows then who you are. Of course you don’t post your full name and certainly not your photo if you aren’t comfortable with that. I don’t expect to be told your life history but if you said you live in London there again who would know you.

I like to know where people live for two reasons. It can make a difference which country they live in as to for instance what products they talk about. I have heard here about something called Thyroid Gold or something like that. If it’s something not sold in Canada then I’m wasting my time trying to find it. If I knew the person talking about it was in England then I would assume it’s an English product.

The second reason is because they might be in the same city as me and could put me on to a good dr for example.

Now if I knew that Silverfox was actually Mary or if Amandak was really Ann where is the loss of privacy.

But could you find me again if I was one if 250 people called Mary? Probably not but the forum won't accept anyone else with my 'name'. I'm only interested in helping others get better and how their illness affects them. There aren't enough hours in the day to 'chat' to everyone!

I never said or implied that I wanted to be best buddies with anyone on this site. I just feel that many people on this site are feeling miserable and a bit of “chat” or a laugh might brighten up a bit. It is obvious that you and I are completely different. For example you said you were on here for years before you were brave enough to even post a a question. I on the other hand will into any room and leave with a new friend. Let’s just drop it. Ive hadn’t enough upset over it.

Had

In case you were unaware, unless you post just to the group, all messages can be seen on the Internet by the whole world! So anonymity is advised unless you want a worldwide audience knowing who you are and what your health problems are. And if insulting or offensive comments have been made then there may be a backlash from the persons who have been insulted or offended. So nothing to do with secretiveness, but self-protection and/or proprietary and/or politeness. Perhaps you should do an internet search on some of the issues you raise in your post and see if it appears in the search results? There is a useful rule of thumb: be liberal in what you receive and conservative in what you send.

Oooh thanks, hadn’t thought about this.

Hi Sheila,

Yes, quite lucky with my doctor so far, whumf - banged me on thyroxine straight away, happy to spread dose, happy to lower dose and raise slowly, wanted TSH to be <1 and T4 at high end. Clued up. But have not mentioned T3 yet.

Thanks to Amandak and Silverfox I’m removing my pic as I hadn’t realised this was public view!

Big cultural differences, interesting that you find the English secretive, but maybe best discussed in a different forum.

Helen

Too late. I know what you look like lol. I agree about the photo but not about knowing your first name. Read my above post.

Another thing to remember is that if you ask a question and people help you, they are doing you a favour. They're taking time out of their life, may be very ill themselves and have difficulty doing so, but are typing all this out especially for you. Maybe things they will have said hundreds of times over the many years of service. Lots of us owe our lives or certainly our quality of lives to these generous people, and I hope that I too have helped a few people and made a big difference to their lives in return for all that I've been given.

These people don't ask anything of you, they don't need to know anything else about you but that you are a fellow sufferer. Sometimes they aren't even asked nicely, but will still offer this help!

To me it's not very nice to reward all this generosity you've received by saying that the help isn't good enough, and that you want something else in addition. Don't forget that many of these people you're criticising are immediately turning from your post to help the next person on the list, and then the next and the next!

Totally agree with you. I'm often disgusted by the way some people behave towards others that have only been trying to help them. But to then accuse them of 'showing off' just about takes the biscuit. It makes one wary of replying to people.

I’m sorry I don’t know what I said that seems to have got you so upset with me???I certainly never meant any offence. Please point out what exactly you are referring to. I am always very thankful, I respond to every answer even whenI feel so crummy and never fail to thank everyone. All I can think of is that I said being bombarded with data isn’t helpful to me and it’s not. If you think I am bad you should see a couple of posts that have actually made me cry. If fact my husband wanted me to quit this whole site. I chose instead to ignore this poster.

It can't be said that you've been bombarded with data, members have only responded to your own questions when you've asked them, in as factual a way as they can. Perhaps though, it might be better to take a break from frequent posting, and take time to re-read and assimilate all the helpful information and suggestions given to you whilst you also read more widely to reinforce your understanding. That must be better than criticising the quality of help given to you, and accusing your helpers of showing off and of being secretive.

Actually I CAN say that I’ve been bombarded with data. That is how I feel. I’m not in any way criticizing the posters because it is very kind if them to help total strangers out and I appreciate it. I have always thanked each poster because when people help, you say thank you.

I am brand new to this site and have never been in one before. I tended to forget that when I answer a post that others will read it. That is my mistake. I’m sorry for that. But all said and done I am allowed to say how I feel. I just should have done it privately . I will in future.

It’s amazing that when a certain member told me what I was doing regarding medicating and it was life threatening and scared me and got me so upset noone said a word. When I was told I HAD TO DO SOMETHING AND HAD TO GET RID IF MY USELESS DR no one said she couldn’t speak her mind. BUT I can’t?

Enough of all this crap now. I’ve had enough upset for one day.

Are you really not seeing a huge difference between someone telling you your doctor is useless, and you turning round and calling someone a show off?

The person telling you about your doctor was giving you a piece of advice, tailored to you, to help you with your health. They weren't blowing off steam or venting about their feelings. For me personally when I have to give someone a piece of advice they may find hard to swallow, I can feel very sad for them. To me it is a heavy job to do. But I do that work because I want to save the person pain and further illness. I do it because I've met many people on the forum who took 30 years to learn these lessons the very hard way, I spent several years floundering myself, and I think it's well worth a moment of discomfort for me (or day of discomfort thinking about that poster and hoping I said the right thing to help them get there) to give them the chance to learn it in an afternoon by caring friends giving them a helping hand.

Whereas calling someone a show off is pure venting for your own benefit. And a very nasty shock for them when they come along and read it later themselves! In fact a nasty shock for any of us who gave you advice, because the insults in this thread could apply to any one of us.

I think if you're feeling a lot of difficult feelings after your posts, then there is nothing unusual about that, its very understandable.This is a place where we discuss some of the most difficult parts of our lives. And it is primarily a place where facts and procedures and evidence are discussed. Its not really a place of healing or emotional work.

In a way this is great, because the ThyroidUK forum is second to none in the quality of expertise and evidence discussed here. But the bad side is we are left on our own to deal with what can be painful here. Those of us who manage our own illnesses are brave souls, and we cope with an awful lot of terrible shit, I can tell you that!! But we have to deal with most of it outside the forum, and find our own coping mechanisms so we don't spill our pain out onto the forum and damage this amazing resource we have!

If you're looking for a forum that is more about chatting and friendship, and less about evidence, blood tests, and hard facts, there are many thyroid forums out there. In the UK I believe TPAUK has a lot more chat than ThyroidUK. There are many many groups on Facebook, most of which have a lot of chat. There is also a Canadian blog that has just become prominent. thyroidpatients.ca/blog/ I believe they have a forum, too, but don't know what it's like.

In which case, I'll rephrase what I said: it is illogical and unfair to those offering you assistance when you have explicitly asked for it in numerous posts, to deem it a bombardment, and to assert that those helping you are - unbelievably - showing off. If however, you experience it as being bombarded, it seems logical to post less frequently, at a pace that allows you to process data in a way that you can cope with. The other issue allied with that, is that this isn't a social forum for general chit chat, but is specifically for the purposes of "supporting people by informing them of various aspects of thyroid health and testing as well as other conditions such as adrenal deficiency, vitamin and mineral deficiencies and genetics that affect thyroid function". When you post frequently and want to chat about personal issues it makes it more challenging for those wanting to help, to sift through the threads for the medical detail in order to fully understand what is happening with your health, and provide appropriate and relevant help. So as has been said, private messaging is perhaps where you can interact more personally if members wish to. However, dismissing the concerns that have been raised as "crap" doesn't imply a receptivity to pouring salt on troubled waters.

NWA6 profile image
NWA6 in reply to mikkymouse

Ok here’s my take on what I’ve just read and here’s where the offence might have started

‘I think some people just like to show off by throwing all kinds of numbers and stats ect at me but I don’t get impressed’

‘I want your kind of responses. A bit of personal stuff’

SHELIA!! 😂 I spat my tea out when I read this! Behave yourself! 😂 Yes thank you for the compliment but you can’t compliment one person by putting down another 😬

I think there is an eclectic mix of personalities on this forum and I personally use it like a pick an mix. There are people here at various stages of knowledge and understanding, some of the posts go way over my head and I AM really impressed by their knowledge. Thank goodness for it because it’s the only way I’ve had any hope of getting better but I too like the personal touch, I know which posters are going to be fact based and which ones are going to be more cuddly about it all. Both styles of replies are amazing and helpful. This forum is not like other social media sites it is somewhat more formal ‘medical’ there are over 100,000 members and posts and replies can easily get lost or missed. Those that feel they can provide answers or possibly causes/reasons are trying to answer as many posts as possible at once, I’ve only been here a few months and yet I’ve see the same questions asked over and over again and I’ve seem the same group of individuals answer again and again, they’ve been doing this for YEARS. How dedicated is that?

Maybe if you feel you’d like a ‘conversation’ maybe try the private messaging? But if posters don’t want to engage in that kind of ‘friendship’ then be kind, one never knows what’s going on behind closed doors.

mikkymouse profile image
mikkymouse in reply to NWA6

Thanks Paula. I am going to on you in a bit. You are probably in bed now anyways. Like your hair lol.

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