My Endo didn't listen to me, what do I do?

[Nanaedake]

My visit to the Endo was a disaster. His ensuing letter, which I have just received, is a strange fabrication or he's seriously misunderstood me or deliberately chosen not to listen to me.

I was referred to the Endo by my consultant because of all the problems I've had with symptoms and with Levothyroxine. My target is full thyroid suppression due to thyroid cancer and I've had half my thyroid removed. I asked him for full thyroid tests including T3, he said T3 tests are unreliable so they are not worth doing, he also said it was because of its short half life. I don't take LT3, only LT4. If T3 tests are unreliable, then why did the hospital test them 5 years ago. What relevance does T3 short half life have to anyone not taking T3 replacement and why would it mean the T3 test was irrelevant for me?

I asked how I would know whether my symptoms were due to a LT4 to T3 conversion problem without a T3 test? He said it wasn't relevant to me because my remaining thyroid would be producing some T3. How does he know that my thyroid is effectively producing T3 when it is being suppressed?

In his letter, following the appointment he states that I was 'keen to persue T3 replacement and that it was inappropriate'. I had not requested T3 replacement at any point during the appointment. I requested a T3 test. How does he know it's inappropriate without testing T3?

He did not take a full history, he did not record that my main symptom was anxiety which is a known symptom of over-replacement. He did not review my blood tests and correlate them with my symptoms or the amount of Levothyroxine I was taking to achieve thyroid suppression when my symptoms were at their worst. He implied that my symptoms were not related to my thyroid without any basis of investigation or evidence to base his assumptions on.

He failed to record that I told him I was unable to tolerate the dose increase after my last blood test due to adverse symptoms. He has decided my dose should be increased to 150mcg which is the amount I couldn't tolerate. He has not given any helpful advice as to how, if I increase my dose to 150mcg I can manage the adverse symptoms and it didn't occur to him that my symptoms could be a hint that I might not be able to tolerate full suppression.

All in all, I'm horrified that he has made judgements and decisions about me without taking a full history, reviewing blood tests in correlation with symptoms and doing full evaluation of my thyroid status with blood tests. I thought medicine was supposed to be evidence based? I'm shocked!!! I'm also scared that I'm not getting the advice and support I need to reach full thyroid suppression or manage the symptoms of full suppression. I'm also scared there is some other problem that he has not investigated.

What should I do? What should I expect from an appointment with an endocrinologist? Is this the norm? Should I complain? What have other people experienced?

[vanessa2]

Yes I had the same experience with endo I saw. Never been back, I think you should report them. It is a familiar story with them & their attitude to their patients. I don't think they should keep getting away with it. Good Luck

[Jackie]

Hi Unfortunately with any field an "expert" is often not who you would choose. I find this especially true with tertiary referrals. Always find your own consultants, after careful research. Not too late, find a good one and ask for a new referral.

Consultant`s letters, I see a lot so a lot of letters. Amazing, even the very best and nicest consultants have fabrication and misunderstanding in there letters. For example I see a top Nephrologist, his last post consult letter was so wrong, when I gave it to my other consultants, they did not want it. I shall tell him that on Thursday too! My NHS cardio is a bad and I gave him his letter back corrected last week There is some excuse for that as he is trying but I am so complicated.. it is too dangerous how it is!

I could go on. Do not be put off, find a decent Endo, a good one,is brilliant.

Best wishes,

Jackie

[Danifox6]

Was this a private endo?? I recently went to see a private endo and I have done all the private tests going and she didnt even look at them. Truly pissed off as my insurance ru s out in 2 weeks a d that was my last chance to get better.

[Nanaedake]

No, it was NHS. I'm sorry you are feeling unwell, i hope you find the answers.

[Hidden in reply to Nanaedake]

Yes, you should complain. If you need help working out who to I'll help you look (I don't know either). But the more we complain about these useless 'experts' the more the Medical Council or whoever it is will have to take notice.

[shaws]

A link will follow. The scientist/doctor knew more about metabolism and treating those of us with thyroid gland problems. Three extracts:-

Most endocrinologists subscribe to the practice guidelines of the American Association of Clinical Endocrinologists. When a patient such as you sees one of these endocrinologists, he’s likely to take her off T3 and switch her to T4-replacement. As many patients have told us, when an endocrinologist switched them to T4-replacement, they became ill and dysfunctional again. These reports are consistent with studies that show the ineffectiveness and potential harm of T4-replacement. The studies show that T4-replacement leaves many patients suffering chronically from hypothyroid symptoms[1][2][3][4][5][6][7] and gaining weight they can't lose through dieting and exercise.[8] The patients are also likely to use more drugs and develop one or more of several potentially-fatal diseases.[9]

and

Now, to address your rheumatologist’s assertion that T3 is dangerous, and his implication that amitriptyline is not. I think the best way to reply to him is to quote publications that are available to him. In the USA, when patients get their prescriptions filled for T3 (usually the brand Cytomel), the pharmacist usually gives them a leaflet on the product. The leaflet contains the following statement:

"NO COMMON SIDE EFFECTS HAVE BEEN REPORTED with the proper use of this medicine." (Medi-Span, Inc.: Database Version 97.2. Data © 1997.)

This statement makes a fact perfectly clear: When used sensibly, T3 is extraordinarily safe among prescribed drugs. When I say extraordinarily safe, I’m comparing T3 with drugs such as the amitriptyline which your rheumatologist prescribes for you. Below is a list of potential harmful effects of amitriptyline. This list comes from the Physician’s Desk Reference, 53rd edition, Medical Economics Company, Inc., Montvale, 1999, page 3418.

and

Dr. Lowe: The short time that T3 is in the circulating blood isn’t the limit of its beneficial effects on the body. When T3 binds to T3-receptors on genes, the binding regulates the transcription of mRNAs, and the mRNAs are later translated into proteins. The transcription and translation initiated by the binding of T3 to T3-receptors occur in waves, and these waves far outlast the T3 that started them at the chromosomes. Moreover, the newly synthesized proteins themselves far outlast the transcription and translation. As a result, a single dose of T3 will be long gone from the patient's system before he or she experiences most of the benefits of that dose—a molecular and metabolic yield that may smoothly spread out over one to three days.

web.archive.org/web/2010103...

[Nanaedake in reply to shaws]

That's very interesting. The question is, how do I get better treatment when my GP and the Endo are refusing to even consider any alternative to T4? I'm in a rural area and can't just change my GP - too far away. Also, only one rubbish hospital in the area. I can't afford to go private so what now? I would like to try NDT as it sounds fairly simple but how do I get a prescription? If I don't get my prescription through my GP then how do I get my blood tests done?

[shaws]

I believe it is very rare that a GP will prescribe NDT. This is what the BTA says about NDT and you will realise the reluctance of the NHS GP's to prescribe:-

british-thyroid-association...

I disagree with their statement as do many others.

Thyroiduk.org guidelines state we must not post information on where to access prescription only medication.

This is some info from STTM as some people are disappointed if it appears not to work for them.

stopthethyroidmadness.com/n...

[humanbean in reply to shaws]

If the ratio of T4 to T3 in NDT is a concern to the BTA I wonder why the ratio of 100% (fake) T4 to 0% T3 in levothyroxine is an acceptable ratio?

That's a rhetorical question by the way.

[shaws in reply to humanbean]

Dr Lowe (RIP) stated in his Rebuttal to the BTA that their statements are false ie.

thyroid.about.com/b/2009/03...

Needless to say, despite a further two reminders, Dr Lowe's Rebuttal met with complete silence.from our authorities.

[Hidden]

This service was mentioned in another discussion recently. hdapatientcaretrust.com/wha....

It might be useful to you.

[vanguard]

This is all very interesting.

But in the meantime many of us are suffering needlessly.

Can we not get up a petition or something. To get the NHS to change their view's on levothyroxine, and the whole question regarding T3 / T4.

After all its supposed to be our health service! .