Trouble with understanding what I am supposed to do now

[NHSdoesntcare]

Can you tell me how to procede in talking to doctors about my thyroid problems, when they don't listen to anything I tell them, dismiss half my symptoms, and then 10 years later discover I was right all along? I am also experiencing difficulty getting any sort of treatment, despite having a TSH of 54 and a diagnosis of profound hypothyroidims (hashimotos btw), as after having tried 3 different T4 and having the same toxic resuslts with all three, I don't understand what it is I am supposed to ask for now, as I have been told T3 and NDT on the NHS are both out of the question and that they are not allowed to give me anything but T4. Can you please tell me what exactly I am supposed to ask my doctors for, as they don't seem to know either?

[Dr David Kerbel]

Hi there "NHSdontcare"!
I am coping a post I made to Expert blog as I think it addresses some of your issues.
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.

[auto_immune]

WOW ...... Bless you, Dr. Kerbel – kudos to you ! If your place of work were closer to where I live you would have me on your patient list in a flash, and I am sure I am not the only one who feels this way. You might find your surgery overflowing with thyroid patients soon. I just hope that many of your colleagues will follow your outspoken and sensible example. We hypos are not such a bad lot, I promise! We are just frustrated up to our back teeth for being labelled hypochondriacs or worse; we need doctors like you – a heartfelt ‘thank you’ to you.

[ipman]

WOW ...... Bless you, Dr. Kerbel – kudos to you ! If your place of work were closer to where I live you would have me on your patient list in a flash, and I am sure I am not the only one who feels this way. You might find your surgery overflowing with thyroid patients soon. I just hope that many of your colleagues will follow your outspoken and sensible example. We hypos are not such a bad lot, I promise! We are just frustrated up to our back teeth for being labelled hypochondriacs or worse; we need doctors like you – a heartfelt ‘thank you’ to you.

I second that. Refreshing to see such openness.

ipman

[auto_immune]

Dr. Kerbel said:
I have some other issues I would like to discuss but will post later.

I am sure all of us hypos are looking forward to it - I certainly am patiently waiting to hear more from you .....

[Pauline Staffs]

Dear Dr Kerbel,
What a refreshing change your comments are. I myself was doing fine & dandy on Levothyroxine but recently & over a period of time (I'm in my late 50's now) have been feeling dreadful to the point of not caring whether I lived or died! I was told by one of the Doctors in my practice that I'd been several times for the same thing, I should exercise & basically pull myself together. In desperation I took my husband with me to see another Doctor. This Doctor initially wanted to treat me for depression, but I refused vehemently. Away to cut a long story short & after a letter from my husband to this Doctor I got a referral letter to a private Doctor who is well known in the Birmingham area. He looked at my bloods & said my dose in his opinion had been far too low for some time! I have increased my dose in 25mcg doses over the last few months to 225 mcg & I am starting to feel like me again. I went to see my Doctor a few weeks ago to discuss things & he admitted that he thought he'd let me down! What a wonderful brave & honest thing to admit. I was extremely touched by his honesty.
All we ask is to be listened, not being told we are being hysterical or worse & being treated accordingly. After all wouldn't it be cheaper in the long run if patients didn't have to keep on going back & forth to the Doctors, been giving anti depressants that are not needed.
NHS PLEASE LISTEN TO US!!!!!

[phoebs]

Thank you Dr Kerbel, It is so refreshing to hear sense being spoken. It is not good for us patients who have GP's with no respect for us. I am a GP Practice Nurse but as a Hypothyroid patient my GP talks to me like a five year old. I wish you were in my area. Thank you for understanding.

[Anitaamazon]

Dear Dr Kerbel,

Thank you for understanding, I wish other GPs would too!

My only question is that if the NHS and GPs are under so much pressure to reduce spending, surely the logical - and strategic - way to do this would be to treat hypothyroid patients correctly and LISTEN to us!
Instead just look at numbers and try to save money by not doing test that are required (my GP doesn't even understand what is required and even though I have given him printed info, he refuses to educate himself...) and giving us medication that doesn't help, like T4 only or ANTIDEPRESSANTS! Indeed!
If they treated us with the correct meds, we won't develop other issues, that are secondary to hypothyroidism, such as depression, weight problems, high cholesterol, muscle and joint pains and aches, compromised immune system, thinning hair, dry skin and other skin conditions, adrenal deficiency just to name a few. If doctors would not get bonuses for prescribing certain medications (like antidepressants) and would treat us properly as they swore in their Hippocratic Oath, then they would save a lot more money!

If GPs would serve the patients and not think about the bonuses they get from big Pharma, we would all be in a better position.

Where do they teach it in med school not to listen to the patients and if they complain too much then just tell them that this is outside of your field of expertise and try to flog them some antidepressants?

Thanks,

Anita