Follow-up to taking Control - Extremely angry with Doctor, I'm almost in despair.

[marram]

It is three and a half months since I persuaded the doctor to start increasing my thyroxine to 150mcg, where it was when I was relatively healthy. I persuaded him to do this on the basis of the Dr Toft book. I had a blood test last week and yesterday was the follow-up appointment with the doctor.

(When I had my blood test I sneakily asked the nurse what my TSH and Cholesterol were last ime. It is like getting blood out of a stone but she did tell me. TSH had gone up from 1.4 to 1.55 in a month from January to February despite the increase of 25mcg in Dec - but I think it could be a rubbish batch of Thyroxine- and cholesterol was 9.7 in December, not tested last time. Nothing else was given or it was not tested.)

When I saw Dr yesterday he told me that my TSH was 'really, really low' at 1.01. My cholesterol had gone down to 8. (It's been as high as 10 since he reduced my Levo). He has decided to go back on his word to go up to 150 and told me to stay on 125. This has upset me, but the whole attitude was the most disturbing. It went like this:

Doctor: Hello, let's have a look at your blood result. Oh dear, your TSH has gone down really low.

Me: How low?

Doc: Really low.

Me: Exactly how low?

Doc: well, its ...er...its...er

Me: It's-? What, exactly?

Doc: 1.01 (Ranges? Are you joking?)

Me: Oh. that's good.

Doc: No, it's not. If it goes any lower we'll have to reduce your thyroxine. Mind you, the T4 is not that high. I wonder why that is?

Me: Why would you measure the T4? Surely that is only the tablets I'm taking, since I don't have a thyroid. Unless I'm mistaken, the T4 in my system could only be the Levo since the thyroid no longer exists. Would that be a reasonable assumption?

Doc: Well, I suppose so.

Me: Wouldn't the T3 be a better guide as to how I'm doing? I would have thought that if the lab felt that the TSH was low, they would measure the T3 to see if it is normal, have they done that? I believe when we discussed the Levo increase we agreed that if the TSH reaches the level recommended by Dr Toft, then the T3 needs to be checked to see if it is normal? Has that been done?

Doc: No.

Me: Right. Oh, by the way. how is my cholesterol?

Doc: It's actually gone down. It's 8. That's strange. Have you been doing anything different?

Me: Well, you know I have. I've been taking 25mcg more thyroxine a day. I'm pleased but not surprised that it has gone down a bit, since that's what I was hoping.

Doc: Oh, that's probably just a normal variation.

Me: Well, it has not varied for six years, it's always been between 9.7 and 10 since my thyroxine was reduced in Nov 2005. This is the first time it has actually gone down. Now, we've done the numbers. Would you like to know how I actually feel?

Doc: Alright, then.

Me: I am much more lively, no longer depressed, the house is cleaner and tidier, I am sleeping a bit better, I've lost 6 pounds in weight, and I have even managed to go shopping on my own several times. You saw that my cholesterol is lower - that has to be a good thing, surely?

Doc: Let's check your blood pressure, we don't want that to start going up or we will have to reduce the thyroxine. Oh dear, it is a bit higher, we'll have to watch that. (rubbing his hands in glee).

Me: That'll be white coat syndrome. (No, actually, I am boiling over inside. No surprise the BP is up!!!)

Doc: Well, We'll let you carry on with 125 for the moment. But it's far too dangerous to put it up any more. See you in six months.

AAAAARGH!

[Hidden]

Ooooh, silly man! He's obviously out of his depth and knows it. Can you see an Endo?

With respect to GPs, I honestly don't know how they can be expected to manage thyroid conditions when their training in endocrine matters is clearly inadequate.

You need to take control!

[marram in reply to Hidden]

I asked him last year if I could see an endo and he literally ignored me. Then, last time I saw him, he said Right! I'll start increasing you Levo and see what happens. And after that if you're still not satisfied, I'll send you to an endocrinologist and see what HE says.

I said in reply: He OR she. And that is what I already asked you to do, if you recall.

[nobodysdriving]

there is some recent research which says it is actually best to keep the TSH at the very bottom of range (ie 0.25 or something like that), if no one has put a link to it by this evening I will do it for you, I am at work and can't do much at present.

you can print that in BIG font and tell him that you are increasing your thyroxine to 150mcg and you will ask for a new script when you are running out.

I would do that actually if that was my GP

[marram in reply to nobodysdriving]

Thanks for that. I actually showed him the Dr Toft book last time I saw him, I thought I had got through but obviously not. He has just gone back to what he said before.

Moral: Never assume that by presenting compelling evidence you can actually convince a bigot.

[shaws]

You may have to change your GP in order to get well.

This is what Dr Toft ex of the British Thyroid Association says: and if you need a copy of the article in Pulse to send to your GP before your next appointment, email [e-mail]. She is unwell at the moment so it may take a couple of days.

6 What is the correct dose of thyroxine and is there any rationale for adding in tri-iodothyronine?

The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range – 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This ‘exogenous subclinical hyperthyroidism’ is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).

Even while taking the slightly higher dose of levothyroxine a handful of patients continue to complain that a sense of wellbeing has not been restored. A trial of levothyroxine and tri-iodothyronine is not unreasonable. The dose of levothyroxine should be reduced by 50µg daily and tri iodothyronine in a dose of 10µg (half a tablet) daily added.

****

This is an excerpt from Dr Lowe (links within may not work) and go to question dated January 25th 2002

Dr Lowe: Your observations don’t suggest to me that your pituitary gland isn’t functioning properly. In fact, your observations are consistent with what science tells us about a patient's T4 dose, her TSH level, and her metabolic health or lack of it. If the goal of a doctor is metabolic health for his patient, he has no scientific basis for adjusting her thyroid hormone dose by her TSH level. If the doctor is going to make the imprudent choice of treating the patient with T4 (rather than T3 or a T3/T4 combination), he should be aware of the relevant physiology and treat her on the basis of it. Otherwise, he's likely to ruin her health, as your doctor appears to be doing to yours.

The TSH level is not well synchronized with the tissue metabolic rate. (Probably most doctors falsely assume that studies have shown that the TSH and metabolic rate are synchronized. But despite my diligently searching for years for such studies, I’ve yet to find them.) Adjusting the T4 dose by the TSH level is like adjusting the speed of your car by a speedometer that's out of synchrony with the actual speed of the car. Adjusting the speed of a car by an out-of-sync speedometer, of course, will get the driver into trouble—either with other drivers who'll object to the car traveling too slowly, or with a police officer who'll object to the car going too fast. And adjusting the thyroid hormone dose by the TSH level gets most patients in trouble—almost always because their tissue metabolism is so slow that they are sick.

[marram in reply to shaws]

I actually took the book with me last time and showed him page 88. I thought I had cracked it, and that when he saw me getting better he would actually use the experience to learn something. Wrong.

It is quite clear that once a bigot, always a bigot. I am female and therefore a hypochondriac.

He actually appeared to be disappointed that I felt better. I was waiting for him to start blathering about placebo effect etc. But he managed to keep that out of the consultation - if it could be called that. He is more like a dictator than a doctor.

I live in a village and there is only one practice, they all toe the thyroid line - one of them implied I would drop dead on the spot if I took any more thyroxine, or at least damage myself irreversibly.

So far, the only damage done to me was by the doctor himself when he reduced me from 150mcg (when I was very healthy) to 100 (when I started to fall apart). I now have an enlarged heart, and, to be honest, that DOES scare me a bit. And my GP seems to think that's a trivial issue, plus would he EVER admit it was his negligence which caused it? I doubt it.

[shaws in reply to marram]

The problem with just showing them a page during a consultation, is that they don't take it in or study it. Ignorance is bliss, isn't it when your patient is asking for assistance in getting better.

I don't know if you saw this blog, posted yesterday.

thyroiduk.healthunlocked.co...

web.archive.org/web/2010122...

an excerpt

I want to emphasize that the TSH test has nothing whatever to do with guarding a patient’s cardiac safety. To infer that a patient has cardiac over-stimulation because the TSH level is low is scientifically unjustified and logically unsound. It is ludicrous for a doctor to make this inference when he can easily and directly monitor how the patient’s heart is responding.

Let me emphasize another important point: Some conventional endocrinologists have grossly exaggerated the cardiac risks of TSH-suppressive doses of thyroid hormone. When compared to replacement doses of thyroid hormone, TSH-suppressive doses are not associated with an increased incidence of ischemic heart disease. In fact, TSH-suppressive doses of thyroid hormone protect the heart. TSH-suppressive dosages lower the levels of blood fats more than replacement doses do. And higher-end doses of thyroid hormone can halt the progression of coronary artery disease. In patients who don’t have coronary artery disease, myocardial ischemia and/or infarction are rare even in those who are thyrotoxic. Moreover, restricting many patients to replacement doses predisposes them to cardiovascular disease and premature death. With these patients, erring on the side of safety means one thing—allowing them to use higher-end rather than lower-end doses of thyroid hormone.

[PoppyRose]

Nothing but sympathy and admiration for you 'sticking to you guns' which so many people have written back to me. I'm in a similar position - fighting to get levo raised from 50mcg for over 2 years and still feeling c...p.

My good news and just about to post is the the Practice Manager agreed with me sorting out the TSH & T4 with more thyroxine BEFORE me taking them to town with a private Consultant already set up. I went in armed with lots of evidence printed of and photocopied but didn't need ti as she agreed with me - to stop diagnosing wme with silly conditions before sorting out my levels.

Result yesterday - the Clinician Nurse upped my LThyroxine by 25 mcg trial for one month. Halleluiah!!!!

Good luck for the future.

PRxx

[Jackie]

Hi, fairly typical GP then! if he says BP high again, insist on a home monitor for 24 hours, amazing the difference! I would pay through TUK for a Free T3 test, essential, then if low in range or just in range, with a decent doc. then ask for T3 on a script and a bit less T4 to keep him happy!!If not ask for a 3 month trial. If under range, anywhere and he will not treat, tell him he is a bully ( they hate that) and you would like to see an endo, vital of your choice, so research first. Good consultants, of any field do not rely on blood tests. I see 12 ,so I do know.!(unfortunately!)

thyroiuk.org.uk/tuk/te

Best wishes,

Jackie

[ravenhex]

White coat syndrome is now a recognised condition and Drs are aware of it and should treat accordingly. By either running a 24 hrs bloodpressure test. Or asking the patient to come into surgery and test themselves or use a local chemist who do these tests and compare the results.

You should see my blood pressure when I go to a certain hosptial.The nurses go white with shock when they see it. Then Im escorted to a room to lie down. Then they retest after 30 minutes and go white with shock as it dropped right off. The best one was a nurse gave my blood pressure ( I was laying down) to the Registrar. He said she obviously hadnt done it properly. So he came into see me and show this inferior female what to do. His face was a picture, he went white as a sheet as the nurse said. Told you so, now Sherlock how are you going to solve this mystery. I laughed.

I love my blood pressure for causing such mischief and nayhem. Would be nice if it did behave itself and not go to extremes.