For the experts...

This is the forum to discuss thyroid issues when talking with doctors.

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Mireille
Posts: 23
Joined: Thu Jan 26, 2012 4:14 pm
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by Mireille on Sat Jan 28, 2012 3:46 pm

For the experts...

I have copied and pasted from http://talkhealthpartnership.com/forum/ ... 6&start=10 in response to Talk Health and I feel so strongly about it that I have put it here for you to air your views.

As thyroid patients, we really need some answers DESPERATELY!

Thank you for reading and waiting in anticipation for your responses.

"Thank so much... we know you are doing your best but unfortunately the answers that were given to questions answered were already known by the patient or totally incorrect.

We have many thyroid forums, and two which feature prominently are Thyroid Patient Advocacy and Thyroid UK and this is where you will find patients discuss and help each other as DOCTORS ARE NOT LISTENING TO THE PATIENTS AND THE SCIENTIFIC EVIDENCE, forcing patients with no alternative but to self medicate.

Now this would be fine if the medication we need was short term but it is FOR THE REST OF OUR LIVES! Hence the frustration and despair shown here as many patient know that they will not be able to fund their medication long term, and doctors will not do further investigations if a patient is self medicating to get to the route of the problem.

The lack of knowledge about thyroid disease amongst the medical profession is staggering and we a fighting for this to be rectified.

Many thyroid patients have reached the end of the road and committed suicide or receive such appalling treatment that they did not survive when they could have been treated with alternative therapies such as T3 or Natural Desiccated Thyroid.

Why is this happening in the 21st Century? Why has the UK gone so backwards in the diagnosis of this disease and failing patients miserably and even causing their deaths.

This is such a SERIOUS matter and should NOT be ignored. When a patient knows more about her/his disease than the doctor, how can patients and doctors work together. WHAT ABOUT OUR RIGHTS AS PATIENTS TO CHOOSE? We can make our own decision whether to take the so called risks that doctors cite without ever giving any SCIENTIFIC EVIDENCE to confirm these risks.

This TOPIC is a serious one as my endocrinologist now wants to wean me off the medication T3 which has saved my life, in order to do the tests I requested. HOW DOES THIS MAKE ANY SENSE? I will be bedridden, weak, in pain, and may even die as I have no one to care for me.

Many of us have used our life savings to fund medication that the NHS should be funding as we have paid into the system all our lives. What about the Hippocratic Oath - first do no harm?

Mireille

shaws
Posts: 7
Joined: Thu Jan 19, 2012 7:42 pm
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by shaws on Sat Jan 28, 2012 6:42 pm

Re: For the experts...

I thoroughly agree with this contributor. I am on a 3 month trial on dessicated thyroid hormone, and I feel wonderful.

I was more unwell on thyroxine with thyroid symptoms than I had before diagnosis, but they have gone now - some with the addition of T3 and then with the dessicated thyroid.

nobodysdriving
Posts: 3
Joined: Sat Jan 28, 2012 6:45 pm
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by nobodysdriving on Sat Jan 28, 2012 6:55 pm

Re: For the experts...

Mirelle thank you for your post!

you have written just about EVERYTHING I would have wanted to write!

THANK YOU THANK YOU THANK YOU!

I whole-heartedly back up/support your post!

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Dr David Kerbel
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Joined: Wed Jan 18, 2012 4:53 pm
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by Dr David Kerbel on Sat Jan 28, 2012 9:19 pm

Re: For the experts...

I apologise for the poor deal patients are getting.
Unfortunately you are not alone and frustrations are clear and anger the outcome.

I think there are a number of reasons or factors at play.
Perhaps you can help by identifying others.

1) Prodromal phase - symptoms of hypothyroidism come on slowly & insidiously. Initially they are very non-specific and often misdiagnosed or ignored by doctors. They often mimic typical presentations of depression so patients are told they have depression. (This can actually end up being the case because of failure to diagnose and treat - chicken or egg scenario, and depression can be a symptom of hypothyroidism.)

All this leads to a fracturing of Dr / patient relationship and loss of trust & faith in previously trusted professionals.
Frustrations and anger builds.

Anyone with any symptoms lasting > 3 months should probably have thyroid function tests.
Obviously mostly they will end up normal but this is what I teach GP registrars.

2) Starting treatment and getting to a therapeutic dose.
Many doctors were taught to start levothyroxine (T4) at 50mcg. This supplements your natural thyroxine but often will not block production. The pituitary picks up that there is now adequate T4 in system so slows its own production - negative feedback. Your Dr checks TFTs and finds you need more T4 so increases by 25mcg - this intensifies negative feedback and lowers your own T4 production further...
It should now be standard practice to "block and replace". This means using a large enough dose of T4 to block the bodies own production and provide enough for the body. The trouble is that we are all different with different T4 requirements.
Current standard practice & teaching is to start at 100mcg of T4 - in BNF (British National Formulary) now, unless patient has angina or is elderly when should start at 50mcg for 2w & increase to 100mcg after 2w.

T4 is slow to build up in body & it takes 3 months for new steady state to establish itself. My local thyroid clinic guidelines are to only repeat TFTs in 3m after any increase and this is standard practice except in pregnancy (monthly TFTs advised).

These guidelines apply to all patients - so thin eldery ladys may only need 50-75mcg & will end up having their doses reduced. Most however will need higher doses. Larger "traditionally build" (Alexander McCall Smith - No 1 Ladies Detective) ladies (hypothyroidism affects F:M 10:1)
As many patients need 175mcg - 200mcg this will take a year to build up to therapeutic doses in an ideal world. The reality is that blood tests may be done late, some may be inconclusive, results go astray or dosages not increased immediately or medication not be available etc. It took my wife 2 years to get to a steady state... (2 yrs of hell feeling tired all the time.)

Can things be done better?
I did read that an Evidence Based Medicine expert looked at literature & there isnt actually evidence supporting current guidelines on increasing T4, practice is based on expert guidance & clinical experience. He took as much T4 as he felt he needed - then checked TFTs 3m later and his levels where normal. The problem is he was a physician & new what he was doing. What do I as a GP tell patients to take when they ask how much to take? We desperately need some new ideas & guidance on getting T4 to therapeutic levels earlier (perhaps a formular based on weight or BMI) - perhaps the BTF can help commission some?

I have some other issues I would like to discuss but will post later.

I apologise for not directly answering your question -

Current recommended treatment and advice is to use levothyroxine & get to a therapeutic dose biochemically.
Generally patients do feel better on proper therapeutic doses.
Unfortunately a small percentage don't.
Referral to an endocrinologist specialising in thyroid problems may be necessary as this will now be beyond GP management skills.
I saw a patient yesterday who I referred to endocrinology who did start T3, she is feeling a lot better. (When she came to see me she was frustrated and angry & it took quite a lot of talking and listening until we could sort it out over a few appointments.)
The vast majority of my patients are stable and feel well on standard T4 - I review and ask them regularly. (She is my only patient on T3 so this isnt the norm).

Yes - T4 is cheap and T3 extremely expensive.
There are currently extreme pressures on GPs to reduce spending - we have to reduce our drug overspend by 50%.
But most of us put patients care first and justify spending to our clinical care groups.
I would insist that a patient first tried T4 and that there TFTs were in normal range before referring for T3 treatment.
British Thyroid Foundation has a policy statement on T3 which does reflect accepted current medical understanding / practice.
This is an evolving field and I am sure things will evolve and change.
As a generalist, I do follow advice from my specialist colleagues.
Dr David Kerbel
GP & GP representative for the British Thyroid Foundation

Steve-H
Posts: 14
Joined: Thu Jan 19, 2012 9:42 am
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by Steve-H on Mon Jan 30, 2012 5:35 pm

Re: For the experts...

Thank you for this reply Dr Kerbel its very honest. Its such a shame though for a doctor to care and understand thyroid disease that they have to have had the disease themselves or someone close to them has had to deal with it.

Steve

Mireille
Posts: 23
Joined: Thu Jan 26, 2012 4:14 pm
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by Mireille on Mon Jan 30, 2012 6:20 pm

Re: For the experts...

Dr Kerbel, you are a breath of fresh air. Thank you so much for being so honest and open with your response. I so wish you were my doctor!

There is a fundamental problem in that the BTA and the RCP continue to confuse the definitions of Hypothyroidism, but because this is so long, I have put in a different posting in this section.

I understand the pressures of GPs to reduce spending, so wouldn't it make sense to give the patient the appropriate thyroid hormone replacement to make them well so that they can go back to work and be able to contribute to society. They would also not develop further conditions brought of by mismanaged and undiagnosed hypothyroidism costing the NHS a fortune.

My GP Practice flatly refuse NOT to treat a patient no matter how symptomatic (I was on my death bed!) until their TSH is OVER 10! Surely this is malpractice? It took 20 years to get a diagnosis and I have lost years of my life costing the NHS a fortune in countless unnecessary test and hospilisation when I simply had thyroid disease which would not be treated because I was 'normal', ie with a TSH of 8 and not over 10! I had to develop other lifelong conditions in order to get a diagnosis and now my case is so complicated that I am being passed from one endocrinologist to another and they are totally out of their depth.

You mention:
We desperately need some new ideas & guidance on getting T4 to therapeutic levels earlier (perhaps a formular based on weight or BMI) - perhaps the BTF can help commission some?
This suggestion would not work for many patients as they do not have Primary Hypothyroidism and there are no teachings regarding Secondary or Tertiary/Type 2 Hypothryoidism. Many have conversion and/or absorption issues as well as peripheral resistance to thyroid hormone at a cellular/tissue level . There are many who are intolerant to thyroxine AND liothyronine so can ONLY take natural desiccated thyroid (NDT) such as Erfa, Armour, Thyroid-S, etc and these are unlicensed medications and only a handful of caring doctors will prescribe these. I have all three of these issues and although I have been self medicating on T3, I need such high amounts to function.

What patients want is for the definition of Hypothyroidism clarified and conversion, absorption issues recognised, so that there is not so much confusion between the organisations. We also want too be treated by SYMPTOMS, and ALSO the option to be trialled and treated with NDT such as Erfa, should T4, T4/T3 or T3 only fail them. Patients also want to be treated as human beings and NOT labarotory results so when showing CLASSIC Hypothyroid symptoms but their TSH is under 10, they should be treated. Unfortunately, NONE of the GPs in my Practice understand what ANY of the symptoms of Hypothyroidism are as they have never been taught, and we are at constant loggerheads. I now have to record all my medical consultations covertly as my situation has got so dire and I am still not getting the help I need.

What does a person do when they have thyroid hormone resistance and no medical professional understands this? I have now been advised by a prominent specialist in Belgium that I NEED NDT such as Erfa, as I am resistant to the synthetic hormone replacements provided on the BNF, and has emailed advice on how to get my high cortisol metabolites down and I am to forward this information on to my endocrinologist. The problem is, will he take this on board?

For you to understand my frustration and despair and my dire need for help, please would you be kind enough to take a look at my case as I am still waiting for answers viewtopic.php?f=185&t=2197&p=6671#p6683

Thank you.

Mireille

PS: If there is any other specialist can help, this would be so appreciated.

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