I have just been reading that many Doctors will not prescribe meds until your TSH is towards 10.00!!! That is absolutely preposterous! I have had classic Hypo symptoms for years and finally gone over the testing range they are SUPPOSED to go by. I thought at last they have to do something . But Oh no I ‘m classed as satisfactory - no wonder we are all ill!
Something needs to be done about this!
0.27-4.20 isn't a universal range for the UK, it's just one lab's range. The ranges vary from lab to lab but are pretty similar.
I absolutely agree with what you're saying. I can't understand the point of having a range if they wont diagnose and treat here until you reach 10. It doesn't make any sense at all. In another country you would be diagnosed when you reach 3.
Yes, sorry I meant to write 'approximate' UK range..
I'm surprised this valid point along with all the leading evidence has not been lobbied to a governing body for discussion yet.
Suggest you get full thyroid and vitamin testing privately via Medichecks or Blue Horizon
Essential to test FT4 and FT3 plus thyroid antibodies and vitamin D, folate, ferritin and B12 too
All thyroid tests should be done as early as possible in morning and fasting. This gives highest TSH
thyroiduk.org.uk/tuk/testin...
Symptoms
thyroiduk.org.uk/tuk/about_...
If you have Hashimotos then treatment should be started
Low vitamin levels are extremely common and affects blood tests
Do need to correct low vitamins to help thyroid
I have now had all of the above tested thanks to this informative site. Been correcting low levels for some time.One more antibody test and then I'm off to self-medicate..
The awful thing is that doctor's don't take the thyroid problems seriously. I feel your pain.😕
It's the "shoehorn" approach to diagnosis. Everyone is out of or in the normal range. Doesn't matter where. Just "in or out". Easy judgement! But everyone is unique. For some, just being out of range is symptomatic. For others problems arise at higher values. Therefore, symptoms have to override biochemistry if the implications are there . We've become victims of statistics whereas we should be patients for individuality in presentation symptoms, diagnosis and treatment.
Beats me too. April 2016 - a GP phoned to say I was low in Vit D, my thyroid was "a bit elevated but nothing to worry about" and my cholesterol was high, which just required a better diet and exercise. I didn't have a clue what 'thyroid' was and thought no more of it, just tried to watch the diet. Dec 2017 - I decided to ask for Vit D retest as well as Vit B, as I'm a veggie. A different doctor, unknown to me, fortunately ordered more tests and told me I was hypo (TSH 26 but T4 in range). This was in a telephone conversation - she just said, you're hypo, tablets for life, come get your prescription. I recalled to her the conversation from the previous doc and she told me "yes, you were borderline then".
I am basically asymptomatic, so for almost two years I have been totally unaware that I was hypothyroid. Because I have no bothersome symptoms I have decided to try to get my Hashis into remission by diet, vitamin supplements etc and I can't help but think I would have stood a much better chance of doing this two years ago, had I known. I did later say to my doctor that I felt I should have been retested. Her reply - 'whoops, sorry, we're so very busy'. That's okay then, it's just my thyroid. I said I was worried that my thyroid had been damaged in the intervening time, to which she replied "What do you mean?"
Straight away, I started to get all my test results printed out and in the past week or so, I decided to get the printout from my bloods from April 2016. Now, I'm no mathematician, but if the TSH upper limit for my surgery is 4.2, I was expecting a 'borderline' result to be around 5. It was 11.75. Now, that really bothered me. I made an appointment with the doctor for last Friday, my first since that diagnosis phone call in Dec 2017 (I was just dealing with nurses until then for blood tests - another story altogether!). It was a different doctor this time, but she was just as unphased as the previous doctors. I asked her, if the upper TSH range is 4.2, at what stage do they diagnose hypothyroidism. I can't even remember what she said, it just wasn't a direct answer. She said something about symptoms and that she saw TSH levels of 100 "all the time". That's okay, then, a level of 26 must be nothing to write home about. I said I felt I had fallen through the net and that my thyroid had been damaged in the intervening time since April 2016. She looked at me, confused, and said no, because I wasn't taking Levo. I think sometimes they act stupid, just to try to stump us. I kept my focus and told her that I had decided not to take Levo yet because I don't have bothersome symptoms, but that I could have instigated my dietary and other changes back in 2016 when my TSH was much lower. I got a non-committal 'mmm' back. I asked, for the second time, about a T3 test and she said they don't do it and it was "of no value" anyway. I did manage to get a referral to ENT to check out the state of my thyroid but when I mentioned the difficulties of managing the condition due to not having access to important tests, such as selenium, iodine and magnesium, she just said "you know more about it than me". So, there you go. I've been diagnosed less than three months and know more than my doctors about the condition. Yes, it's disgraceful, but I can't see anything changing anytime soon. I already feel like I'm a bit of a nuisance to them because I've decided to learn about my condition and I ask questions, instead of just acting like a wee bird and opening my mouth while they pop in whatever pills they think I need. There seems to be no accountability for dragging their heels on thyroid conditions. I think all we can do is advocate for ourselves, question what needs to be questioned and try to manage our own care as best we can, and we'll be doing a darn sight better than the doctors, for sure.
Agree with your sentiments ,but the medicine is a hormone you need .You will develop more symptoms from not taking it.I know someone who was diagnosed by a general well woman check over 20 years ago .She had no symptoms ,has taken levo since with no problems.
Treepie, thanks, but I wasn't seeking advice on how I am managing my condition as that is my personal choice. I was just sharing my experience of how GPs don't seem to take thyroid issues seriously.
It might still be worth getting a levo prescription even if you don't take it as that way you get all other prescriptions free too and you stay on the books as hypo.
I did get the prescription, but then began researching it and decided to hold off for now. We get prescriptions free anyway in Northern Ireland, so this isn't an issue for me. I didn't realise prescriptions were not free in England. Thanks.
It really is shocking. I find it hard to believe she sees TSHs of 100 frequently! I've had a TSH that high and was on the floor. Although occasionally on the forum we see people with TSHs of that kind of level more like you - high TSH, but no symptoms. But not very often! Weird that they consider extraordinary high TSHs 'common', but people thR don't do well on Levo, or have central hypo, poor conversion, or other complications to be 'rare'!!
What on earth do they consider 'borderline' to mean, i wonder? With a TSH of 11.75 you were not only well over the reference range, but comfortably higher than their secret extra high threshold, too! Even if the number was 10 or 9.75 you could see some kind of logic in it!
Have you looked into the possibility of a pituitary tumour? I have never quite figured out whether there is anymore known about high TSHs that aren't accompanied by symptoms. I am impressed by a TSH of 26 even if your doctor isn't 
Thanks for your response. Yea, I'm impressed by my TSH also. I wish the docs in my surgery were impressed with it. The last doc I said also said they don't usually see people who have problems with Levothyroxine. That sounds a bit strange to me also. My level was down to under 15 at the last test a few weeks ago, so it's interesting to think that if it goes a bit lower I'd be back to being non-hypo, in their judgement. Except for the fact I've now been tested and confirmed for Hashis. Yes, I did wonder about other causes but once I was confirmed as having Hashi's I just assumed it's auto-immune - could someone have both Hashi's and a pituituary tumour? Also, I thought that with a pituitary tumour, my TSH would be low along with low T4 - no?
As far as I know, there are two styles of things that can go wrong with the pituitary. And I may have got confused and not be right 
The pituitary can be struggling to produce enough TSH, and may also then struggle to make other hormones (or not). This would lead to a low TSH, and freeT4 and freeT3 will also be low, because the thyroid is not being told what to do.
Or the pituitary could have a tumour, which itself produces TSH out of control. This would cause a high TSH, but I'm not sure about the other numbers, come to think of it. You'd expect them to be high, but there might be other feedback mechanisms in the body that keep them somewhat reasonable.
I'll do a bit of googling on it, thanks. I can just imagine the doc's face though if I suggested being checked for it when we can't even get T3 tested. You'd have to falling down half dead in front of them. Thanks again.
I'm having hazy memories about this, but not sure if I'm mixing it up with anything else, I think an MRI can confirm.
I think it's very very difficult to get the doctors to take any more unusual forms of hypo seriously 
Many people end up self diagnosing, jumping through whatever hoops the doctors need.
So it appears that even with a GP's 'secret range' you can still be ignored if you have no symptoms. Then if you are suffering with obvious hypo symptoms and are just above their so called guideline range they still ignore you!
What is the whole point of this - i feel so angry. Especially now my GP says I 'will be taking my whole life in my hands self-medicating.
God forbid anything should happen to me when I do, but feel free to tell my GP that I said:
'I told you I was ill'..........
Hehe 
Yes, I think theres this weird idea that doctors make no mistakes ever, and that the second you make your own decision the earth will open and swallow you up.
In reality doctors do stupid things all the time, and people die or get injured or sick, or end up sicker in the long term.
I do find that comforting to remember while self medicating. Even if I end up making a bad mistake, I'm no worse off than I would be by following doctor's recommendations.
I like your audacity- asking questions indeed! What gets me is that they go mad if like me you have a TSH of 0.05 well below bottom of range, because it is only then I feel reasonably well, yet are happy to let TSH go way over the top of the range and dismiss the fact that they have ignored it and taken no action. TSH is of no use once on levo anyway.
So it's one rule for them and an entirely different one for the patients. Furthermore, how dare we question a health service that is free?!!! The fact that we pay/have paid taxes and NI is irrelevant. Why should we expect "value for money"?
That gets my goat, as well! Probability, what counts as extreme, rare, serious, etc is a completely movable feast on doctor world!
👏 well said 👀 at the badly run NHS, if doctors have there way and charge everyone for their services. We will be very 🤒 people.
Unfortunately, if the NHS collapses or shrinks to a shadow of its former self and we have to pay, we will still be seeing the same doctors with the same training, the same personalities, the same knowledge and the same attitudes. Nothing will change.
Just more pissyl attitude...to thyroid problems 😚
As you had EBV, have you gone strictly gluten free (had coeliac test first )
No I haven't as have mainly on a Yeast/sugar free due to being told I had Candida years ago. I def must go Gluten Free now after reading how common it is in Hypo sufferers. However, I did read somewhere that a test for Coeliac may came come back negative, but you can still be Gluten sensitive and there is no no test for that.
I think if I was Coeliac I would have a lot more other symptoms?
Yes gluten intolerance when hypo is more likely due to leaky gut and molecular mimicary
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
amymyersmd.com/2017/02/3-im...
chriskresser.com/the-gluten...
scdlifestyle.com/2014/08/th...
drknews.com/changing-your-d...
thyroidpharmacist.com/artic...
Many years ago when i first got ill I thought I probably had a leaky gut.I had a permability test but it came back negative.
I'm convinced after reading your links that I actually do. Maybe it wasnt so bad back then...Gluten free seems the way forward.
When I was first diagnosed my doctor was as well but couldn't remember his lectures! (Lectures only really tell you how it works and what can go wrong, clinitions tell you how to treat it). So my husband did that and filled him in and since that day this doctor only prescribes NDT though been in a private practise for years. Since then I've always thought scientists understand far more than medics. So it's about time clinical trials were speeded up and proper evaluation done on the different types of treatment. We have gone very much backwards as in the late 18 hundreds patients were given NDT and lived!
Sorry Silverfox7 - I didn’t quite understand what you meant 'Your Dr was as well'?
Not surprised Dr's can't remember their lectures regarding the Thyroid etc - apparently they are very brief....
So your husband got his NDT prescribed through a private consultant or his GP is in private practice?
Yep. I can't for the life of me figure out how they interpret a TSH level that was almost three times the upper limit to be borderline. I do try to give doctors due respect, but I slipped through their 'busy' net and, yes, I am annoyed about it. I did consider making a complaint to the practice manager, but since this seems to be the standard approach, I know it would most probably be futile and I'd only end up peeving them up, which wouldn't help me. If it was a cancer result or a diabetes result, they could be held as more accountable, but when it's a thyroid issue, it just doesn't seem to be viewed as important and they seem able to ignore results above the range.
Magnesium time! What does everyone do? So many choices - how to decide?
Vegovy 
Changing beta blockers
Unraveling the molecular architecture of autoimmune thyroid diseases at spatial resolution
