Your story sounds so familiar. I have lost count of the amount of posts I've read where people complain of being treated this way. I don't have advice but wanted you know that I feel for you and I'm sorry you are struggling.
It has never been above 2 in my entire life. In fact, I was really ill and was having terrible heart problems and mini-strokes when my TSH was as high as 1.4! Now it is 0.01 and I am getting better.
In the USA a TSH of 6 would be considered definitely hypothyroid and treatment would be given. So are the Americans in some way different from the British? Are we a different species?
I'd be inclined to self medicate for a few months to see whether your symptoms improve. You'll have to manage your medication by symptoms alone unless you pay for private blood tests. Tests bear little relation to wellbeing though, as you've already discovered.
The danger with self medicating (apart from over or undermedicating) is you might mask the cause of underlying symptoms that may not be thyroid related.
Prior to surgery the surgeon doubted many of the symptoms I related were thyroid related. I wasn't influenced by the internet or thyroid fora as I hadn't researched them. Now I have, and my symptoms were entirely consistant with spiralling Hashi's, hypo to hyper and back.
Post surgery I've been very ill on T4. Endos insist my accumulating symptoms are not T4 related. I proved to myself that they were by stopping T4 until my TSH rose to 107. Nearly all symptoms disappeared and I felt relatively well for a few weeks. Nothing in my daily regime changed other than ceasing T4.
Back on T4 and the side effects quickly resumed. I'm now adding T3 and this seems to mitigate some of the unpleasant effects of T4. Knowing I can feel well, better than I feel now, means I shall also trial NDT soon.
I fully accept any risks to my health caused by self medication. I'm looking for a quality of life now, rather than longevity with increasing illness and poor quality of life.
..the upper limit for TSH in the States was lowered to 3 in 2003. Maybe find the information on the AACE - I think it is called - the American Association of Clinical Endocrinology. Hopefully someone will correct me if I am wrong ! Print it off and send it to your Consultant. Also Dr Tofts Book - Just 4.99 on amazon or in pharmacies - explains about upper levels and the introduction of T3. The book is written on behalf of the British Medical Association - perhaps your GP and Consultant would like to read it - maybe send them a copy. He bats on the same wicket - they are all in the same club so they should take notice.
So frustrating for you - I just want to box his ears....
Marz, FYI In 2002 AACE suggested changing the reference range to 0.3-3.0 but it never was actually adopted. That started the TSH reference range wars that Mary Shomon has written about. The TSH RR is generally 0.3-0.5 on the bottom and 4.0-6.0 on the top and from the top to 10.0 is still considered sub-clinical or mild hypothyroidism by many doctors and treatment is up to the discretion of the doctor based on clinical presentation. Of course, since they stopped teaching how to do a clinical differential diagnosis around 1975 that usually doesn't give the patient good odds. If you can find an MD that is practicing Holistic, Integrative, Anti-Aging, CAM or Functional Medicine or an ND in one of the states that license them, the odds are much better that they will treat the patient instead of the lab test. Unfortunately the majority of doctors here in the US are just as useless as the ones in the UK although we have a much larger minority of good doctors, usually though you have to travel to find one. PR
...thank you for updating me ! I have read on more than one occasion that the range in the States is up to 3 or 3.5 but of course I cannot find the info when I need it
Marz, you are quite right in that this misinformation shows up all the time. It is like playing whack-a-mole, every time you smack in down in one place, it pops up in another place. As far as I know the 0.3-3.0 guidelines were never widely adopted although there might have been a lab here or there that used them. A couple of links if you would like to read more. The first is from Mary Shomon's site and is a result of a search for the TSH reference range wars. The top third of the page is ads and the bottom 2/3 articles from Mary.
The second is a link to the pdf for ATA's and AACE's 2012 treatment guidelines. On pages 999 and 1000 they talk about the TSH reference ranges and some of the various results.
I find it is also quite useful as a sleep aid. Anytime you are having a problem getting to sleep all you need to do is read some of this and slumber will arrive soon, at least that is the effect it has on me.
If you read the whole thing you will notice it is full of wonderful qualifiers.
"The guidelines are not inclusive of all proper approaches or methods, or exclusive of others. the guidelines do not establish a standard of care, and specific outcomes are not guaranteed. Treatment decisions must be made based on the independent judgment of health care providers and each patient’s individual circumstances. A guideline is not intended to take the place of physician judgment in diagnosing and treatment of particular patients (for detailed information regarding ATA guidelines, see the Supplementary Data, available online at liebertpub.com/thy)."
Another of my favorites, note primary hypothyroidism.
"The guidelines presented here principally address the management of ambulatory patients with biochemically confirmed primary hypothyroidism whose thyroid status has been stable for at least several weeks.
On the plus side they have the guidelines for pregnancy which are good.
It is actually quite an involved story from the NHANES III data to NACB's 2002 guidelines to AACE's 2002 guidelines to the TSH reference range revolt to ongoing RR suggestions to all of Dr. Spencer's work to Harmonizing the TFT's. I'm working on writing a piece about the fallacies of the TFT's that should be done in a month or three. PR
ooh - I'm sure I could pick olives very well Marz!
I was under the impression that the guideline had been lowered too, but was informed a while back by an Alaskan friend. But I'd already said to my GP who said TSH 5 was normal - "Normal? I'd be treated way before that in America!!" - he didn't know anyway
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Waste of time
Feeling discouraged. Saw endo Tuesday. Waste of time.
what a load of croc
Changing time of medication?
