Some info that may help when doctors start reducing your meds or refusing to increase them.

[Heathersue]

Hi all. Just joined and hope this information can help.

I too have had to fight to get well. My fight went on over 16 years and lead to me getting to 25st and infirtile. So I've been there! My TSH is now 1.2, I'm very slowly loosing the weight and I feel great!

So some facts for you lovely people...

The normal range is 0.3 - 2 and the reference range is 2 - 4.5. Beware, a lot of labs still use out of date reference ranges! This range has been in force since July 2007 and is on the N.I.C.E. and NHS guide lines so the doctors can check. My doctor said my TSH was slightly elevated at the start.... it was 8!

Next, the reference range is where the problems start. If you are still showing clinical symptoms and your TSH is within that range the doctor should be giving you more Thyroxine. The source of this information.. The Journal of Endocrinology and Metabolism.

Now for the real reason for this reluctance to treat hypothyroidism effectively and even put you on the meds in the first place. Money! Simple as that. Once you are diagonosed you are entitled to free prescritions as hypothyridism, if left untreated, can be lethal. Either by reducing your lifespan by 20 if you have a partially working thyroid or by slipping into a coma and dying if you have a totally non functiong thyroid (something no-one ever tells you about). I had to push to be put on treatment with a TSH of 8, 4 times the normal amount! If I hadn't educated myself and pushed I'd now be dead.

And finally, if you are being treated effectivly but you suddenly get worse do go back and get retested. Your thyroid may have given up the ghost entirely. Mine did. I am now on 200mcg of levothyroxine a day - thats full replacement. I'm not entirely symptom free as T1 and T2 are missing from my body entirley but I live a full life and thanks to treatment was given my life back from pain and mysery.

I hope this information has been useful to you. Don't give up, you are entitled to effective treatment and be able to live a happy life.

Heather x

[HarryE]

Thanks Heather, but I've never seen this updated range referred to on any of the papers I've read. Do you have a link/reference?

Thanks

[Hidden in reply to HarryE]

Harry, that might explain a comment my GP made last week. I made a reference to ranges in other parts of the world being lower than the UK and he said "yes but it has been lowered now". I didn't follow it up as was desperately trying to remember all the things I wanted to say to him, but wish I had now.

[HarryE in reply to Hidden]

But 2007??? Surely we would have found out about it? Puzzled......

[Hidden in reply to HarryE]

Yes, I agree. I wouldn't have thought of it/mentioned it if I hadn't read Heather's post. A very quick google search has led me to this document (only 2006 though) which seems an interesting read for anyone who hasn't seen it and wants to understand why the holy trio of GPs, Endos and Labs make the testing and treatment decisions that they do, but a brief scan through seems to reiterate that 10 is the magical number

british-thyroid-association...

[helvella in reply to Hidden]

But the original poster has suggested that the Reference Range the reference range is 2 - 4.5. That is, with a bottom end way higher than any I have ever before seen.

And no explanation of the use of the statement "the normal range is 0.3 - 2" as in some sort of contrast to the reference range.

However, for those who have been around long enough, the top ends of TSH ranges have generally fallen over the past decade. This might bring no solace as the reason might possibly be found within changes to the technical capabilities of the TSH test rather than any real change in the likelihood of diagnosis.

Rod

[PR4NOW]

Heather, T1 and T2 are primarily made in the extra-thyroidal tissue. You might do better with some T3 added to a reduced T4 amount. I posted a paper showing reduced T4/T3 ratio in people with full or partial thyroidectomy.

ncbi.nlm.nih.gov/pmc/articl...

Two more articles that might be pertinent. PR

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

[helvella]

I assume you are referring to these pages:

cks.nice.org.uk/hypothyroidism

They are not NICE guidelines in the usual sense. Simply the former CKS (Clinical Knowledge Summaries) which were inherited by NICE - and their web addresses changed. They were never developed in accordance with NICE standards and are not, I believe, usually regarded as have the force of "proper" NICE guidelines.

Although often mentioned, I do not believe that hypothyroidism is not diagnosed on the basis of "free" prescriptions. If it were, we should be seeing significantly different diagnosing rates in Scotland and Wales where all prescriptions are "free". Maybe we would also be seeing the over-60s in England also being diagnosed more readily?

Mind, in the link I mentioned, it suggests that a typical reference range for TSH Thyroid-stimulating hormone (TSH) might be 0.4–4.5 mU/L.

So perhaps I am looking at the wrong place, any links please?

Rod

[Heathersue in reply to helvella]

I may be being cynical Rod. I was diagnosed years prior to treatment but was not given treatment on the grounds of possible side effects. They didn't even try to treat me. And I have no side effects now I'm on the meds. If not for money then what? And drugs still cost even if the prescriptions are free. Cynical I know but I know the doctors are under tremendous pressure to keep expenditure down.

[helvella in reply to Heathersue]

Being cynical is fine.

If it were ONLY costs, then diagnosing and treating hypothyroidism effectively would be a major step towards reducing those costs. Many of us have had numerous forms of investigation and treatment which would have been unnecessary with good thyroid diagnosis and management.

The are are several factors which make thyroid a less than wonderful area of medicine (and not only in the UK):

Many doctors seem to believe the "little white pill every day" stories, they believe that the whole subject was understood many decades ago, that all that is required is to prescribe according to some guideline. Anything else isn't thyroid.

Many doctors utterly fail to understand that inadequate thyroid hormone has an enormous list of potential symptoms, and that quite a number are to some extent cumulative, that damage from lack of adequate treatment can be permanent.

Many doctors do not understand why blood tests have to be treated very much as indicators and are not infallible.

Many doctors think of thyroid as being boring - and most likely affecting overweight middle-age to older women. Hardly likely to recruit the finest minds and the greatest hearts into it as a specialism.

Few doctors seem to have any understanding whatsoever about the precision of dosing that can be required. That changes between batches, between makes, between tablet sizes, can all result in sufficient dose variability to cause problems.

Rod

[Heathersue]

Ok, to answer some questions. The original documents were from both NICE and NHS sites. Looking for a link but can't find it. Possibly removed? I know I didn't dream the same info on 2 government sites.

The normal range is what a person with a functioning thyroid has. A pregnant woman is seen as having elevated TSH levels at 1.9.

Reference range is the reference for sub clinical hypothyroidism. The point at which they need to monitor and if no clinic symptoms do nothing.

While looking for the information to link I saw this number of 10 keep coming up. This is relatively new as far as I can see. I will admit I've not looked recently but this turn about explains why so many people are being under treated.

I'll keep digging for info but I've noticed NICE and the NHS refer to the reference range now without specifying what it is. Nice way to change the range without informing anyone what it is. I know the US were moving to make the reference and normal ranges the same. Looks like the UK has extended it so they can save money!

Once I find more info I'll post it.

[infomaniac]

If I was reading this in a film there would be a "needle screeching across a record" moment and a stunned look on my face. A partially functioning thyroid reduces your thyroid by 20? I'm assuming you mean years??!! Is this correct?

[Glynisrose]

I was concerned at the last blood results I had from my endo and e-mailed his secretary to ask for the reference ranges and yes, they have been lowered, this might have something to do with the declaration of Iodine deficiency in this country.

While we are on the subject NO doctor can change or reduce your meds without your permission. This is enshrined in NHS rules. If the doctor suggests a reduction IMMEDIATELY say NO!! If you say nothing that is tacit agreement.

[helvella in reply to Glynisrose]

On the other hand, you cannot demand that your doctor does not reduce your medication. Well, you can try to demand as much as you like, but if they are set on that course, reduce it they can.

What they cannot do within the rules is reduce it without any form of discussion at all.

Rod

[Margo in reply to helvella]

Confused.com are you right regarding doctor/Endo rights to reduce medication or Glynisrose, you both can't be?!!

[helen0701 in reply to Margo]

The gp has the ultimate say in your dose of medication but he should involve the patient in the decision process, if you think about it logically no gp is going to stand up in court and say it wasnt my fault the patient died they decided what medication they wanted to take I told them it would kill them. If it was the patients decision medication wouldnt be prescription only you would be able to buy everything over the counter.

[Glynisrose]

No doctor can change or reduce your meds without your agreement, if you say nothing then you are in tacit agreement, do not be fooled your doctor or specialist cannot treat you without your permission.

[JennyRay]

Thank you very much for this HeatherSue. Rob has very kindly given the NICE link. It will be very handy when the GP complains about my FT3 level.