Correct Thyroid treatment?? Why is this an impossible ask.....

[ClareP81]

I've recently been diagnosed, Under Active - Autoimuinne. Fairly new to this site.

I have been reading a lot of posts on here, Trying to knowledge myself to aid my recovery and symptoms.

It just totally amazes me that we all have different levels of symptoms etc we are expected to live with on a daily basis. It seems to be a total up hill struggle, jumping through hoops etc. just to get the right treatment!! Which by all accounts takes years to acheive. We all pay our NI so why are we always up against the NHS not being able to treat us correctly. I know it comes down to money at the end of the day. But you would think they would save sooo much money and time by gettng it right first time.

It takes years to become a doctor, but just seems to me that unless you have a cold, they dont know whats wrong with you . Considering your Thyroid effects everything, You would think all doctors should be clued up on it...............Alas not

Rant over sorry - frustrated.com x

[Ruthi]

Yep! membership of this board guarantees that you will regularly be frustrated, and sometimes furious on behalf of some poor soul who comes here having been abused by the system!

It is not just the NHS. Endocrinologists worldwide seem to be perpetrating the same torture on their poor trusting, unsuspecting patients. Its as if we have all stumbled into another dimension where doctors are taught to abuse and belittle. If you have read Philip Pullman, you will know what I mean about another dimension!

But wait! This is just the beginning. Apart from the friends you make here you should be prepared for friends and family to gradually decide that you are malingering and there is nothing really wrong with you that a good diet and some decent exercise won't fix. I wish I could bring better news....

We are told repeatedly that 85 -90 % of patients are absolutely fine on Levothyroxine, if they are lucky enough to get a diagnosis. And maybe they are. We here are the 10-15% that are not so lucky!

[shaws Administrator]

You are entitled to rant as we all want to know the reason too. It so easy today to diagnose someone who has a thyroid gland dysfunction (except it took me about 6 or 7 years).

Just take a blood test (I never had one for thyroid) and look at the print-out and the TSH informs them. (that's what they imagine).

May I say first that many people seem to do fine on levothyroxine but they certainly wont be on this forum for sure. They will be either having a healthy life, or an unhealthy one as they've no access to the internet or think of searching for help.

It is all down to two things nowadays.

Previous to the blood tests and levothyroxine, we were diagnosed upon our clinical symptoms alone (there's about 300 plus). We were then given a trial of Natural Dessicated Thyroid Hormones (since 1892 it has been in use). Doctors didn't even need a blood test they 'looked' at their patients, took temp/pulse/tested achilles tendon etc.

Around the late 50's/early 60's The Pharmaceutical Companies wanted a piece of the pie and brought out 'perfect' blood tests - no need now to go by clinical symptoms as the blood test would give all the information. So it was decided that the TSH (thyroid stimulating hormone - from the Pituitary Gland) would be the definitive test as to whether or not we were hypo.

The old-fashioned doctors who still used signs/symptoms were eventually taken to task for prescribing NDT and symptoms and some lost their licences as doctors.

So we now have the 'modern' method. Disregard the patient, symptoms and all. Only diagnose by the TSH and if we are dissatisfied with levothyroxine but TSH in range - we actually have a Somatization Disorder as well as a hypo problem. So we are dismissed.

The fact that these Endocrinologists seem to be unaware that our TSH varies throughout the 24 hours. If we've just taken thyroid hormones and an hour later bloods taken our meds will be reduced because TSH will show too low. Feel awful in a short time, another blood test now show TSH too high, so meds increased up again to reduce TSH and so it goes on, and on, and on.

It has been sussed out by some 'good' doctors who are sympathetic that if we have a blood test at the earliest the TSH will be at its highest point in the day and if we also allow 24 hours between our last dose of T4 and the test the results will be less skewed.

So get the earliest possible test and fast (you can drink water). Leave about 24 hours between your last dose of levo and the test.

If you've not had B12, Vit d, iron, ferritin and folate ask for these as we are usually deficient which can also cause problems.

Doctors are following the guidelines laid down.