This morning, I had an appointment so that I could ask for a small increase in my dose of levothyroxine. Anticipating the need for some straightforward paperwork to back up my request, I thought the BTF information looked OK - simple, short, establishment-based:
The correct dose of levothyroxine is one that restores good health. In most patients this will be associated with a thyroid-stimulating hormone (TSH) reading in the lower part of the reference range and a level of thyroxine (T4) in the blood towards the upper part or even slightly above the reference range.
I asked for an increase (from 112 to 125). Response: TSH = 2.9 - that's in range. Produced the above. Doctor wasn't happy with that statement. Reason? He doesn't know my FT4. Why? Because the nurse practitioner who did my test refused to request FT4. (The week before, the lab had been lecturing that they should only ask for TSH - it is all that is needed. Had she requested, it would most likely not have been done.)
I can't for the life of me see why not knowing FT4 apparently undermines the bit about TSH. Surely, in that sense, the lack of FT4 simply means it cannot be used to verify the second part? And if it is such an issue, well, give me an FT4 test!
The BTF paper was grudgingly accepted as being marginally better than Wiki. But dismissed as not being a proper "paper". I have booked a forklift truck to carry the printouts for my next appointment...
(I got the increase. To be tested again in two months.)
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helvella
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Very Catch22. I don't know your FT4 so don't want to raise dose. Well, test my FT4. We don't test FT4.
Does your GP realise how ridiculous the comment about the BTF statement was? Of course, it's not a 'proper paper' it's guidelines for numpty doctors who think TSH anywhere in range is satisfactory.
Ironically, Joseph Heller mentioned "thyroid" more often than most authors - a couple of examples below.
... week, without even knowing what it means. Soon he'll be claiming he isn't Jewish.'
"Not Pop," Joannie stated. "Maybe you and me. But not him.'
'I wonder why I never spoke to her more." Curiosity was making him thoughtful and he leaned forward studiously with his head resting in his hand. "I still don't know what she died of, Joannie, and I'm afraid to find out." He felt mawkish but nevertheless went on. "I understand what that means now. I didn't even realize I didn't know until I applied for my first life-insurance policy and they asked. I answered cancer of the thyroid because of that bandage of some kind around her neck, but I've really no idea. The only time I think about it is when I talk to you, and you don't want to find out either. "
' 'Ask Sid," said Joannie. "I bet he remembers a lot."
'Sid," Gold repeated with the grimace of a minute before and stared past her. "Sid won't open up about anything. All he does is make fun of me at dinners. I wish he'd stop. I could kill him."
Good as Gold by Joseph Heller
"I said it loudly enough." (Oh, Christ—he's in a mood also, and he's taken me unawares.)
"Nothing."
"Don't lie to me."
His exophthalmic eyes are glaring at me with moist and sadistic petulance, and his sensual face is hot and beady around the brows and mouth. Green will normally not allow himself to perspire where other people can see him. (I wonder if he is bothered more this morning by his thyroid deficiency or his enlarged prostate.) He is wearing a large, soft, box-plaid camel suit with notched, wide lapels and a gray vertical weave and fine violet lines, and can get away with it.
The rest of us have to wait for festivals and expositions, al-though box-plaid slacks are okay on weekends at barbecues, marinas, and country clubs. Green is a flamboyant presence with an overwhelming vocabulary that keeps most of his superiors in the company aloof and ill at ease. Horace White shuns him like the plague. Green courts Horace White; White flees from him toward Black, who despises Green and vilifies him openly; Green retreats, nursing his wounds.
Well no surprise there then helvella.... at least you got your increase but in fact nothing has changed. Did the gp not offer you antidepressants as well? Perhaps being a man he refrained himself ... Hope the increased dose helps you. Never mind a lift truck it’s a bulldozer that is required to shake the establishment! 😀
One of my practice nurses was very cross that my T4 hadn’t been tested last time. Think it must have been the doctor’s decision because I saw her shortly afterwards and she seemed a bit offhand about it
No wonder I by pass the doctors and use Blue Horizons to know where I stand! Mind you I head loads of blood work done after seeing a rheumatologist yesterday - tubes and tubes of the stuff. I asked the phlebotomist what the doctor was checking for and she turned the screen for me to see. Wish I’d got my camera out and photographed it all because I can’t remember what it all was. Last on the list was a full blood count.
Did you take Dr Toft's Pulse article? Since Dr Toft was the president of the BTA (not BTF) it's quite hard to say he doesn't know what he is talking about. It basically says the same thing but has the added oomph of being from the doctors' magazine Pulse.
The phrasing in the BTF article is pretty much identical to Toft - I think he might have written the original, or it was simply plagiarised from him! Was so simple to quote the main thyroid establishment of the UK. I thought.
Well, apparently, my GP does not know who Dr Toft is..... neither Dr Peterfield et al..... How suspicious or does it indiate these doctors are not really spoken about in "medical circles"... ? What do you think?
Are they deliberately "ignored, forgotten" because they disturb the establishment ... ? Bearing in mind most medical professionals haven't got a clue about thyroid dysfunctions and choose to remain clueless of course.
Probably doesn't have an interest in endocrinology, so wouldn't know the big names. Dr Toft is absolutely establishment and former president of the British Thyroid Association and by appt to HM the Queen, so taking no notice of what he says in the GP magazine Pulse is arrogance or ignorance. You wouldn't expect Dr P to be respected or known as he is outside the NHS.
My GP really has no idea who Dr Toft is..... regardless of his credentials.... Anyway the majority of GPs do not have an interest in endocrinology. They haven't got a clue and can't be bothered to learn,perhaps don't have the time to do so.
I quoted Dr Toft to the GP I was battling with, she didn't give a toss what he'd written, my TSH is 0.03, T4 25 (slightly over) but T3 well within range. I have no choice but to reduce 😡
Quite right they don’t give a toss! They conveniently ignore what is a problem for them. No real concern for the patients if gps aren’t dealing with usual everyday problems like blood pressure, etc.
“No real concern for the patients if gps aren’t dealing with usual everyday problems like blood pressure, etc.”
As someone who suffers from labile hypertension, I can assure you it is not a “usual everyday problem”. It is a very serious problem which appears also to beyond the capabilities of most GP’s I have come across.
However, General practitioners cannot possibly know the fine details of every disease in the book, that’s why we have specialists. Unfortunately, within the NHS, there are not enough specialists to go around.
If people would stop wasting GP’s time and stop abusing our precious NHS, perhaps people with genuine illness would get the specialist advise they really need.
Of course high blood pressure is a very serious condition. What I implied is that doctors only deal with "run of the mill" conditions that they see a lot in their surgeries, like BP, diabetes (another serious condition), AF, etc. basically conditions many people go and see them about. So they are used to prescribe, even badly, treatments for such conditions.
What they do not do is finding route causes of unusual symptoms, something they are not familiar with... they don't even seem to want to find out. Too much work for them, deviating from their "easy usual prescribing routine"... This is what I was saying perhaps in a clumsy way. As we are all fairly aware some specialists are not any better either!
Patients with serious thyroid dysfunctions are only too aware of the GPs general ignorance and lack of education in those conditions, of the correct and accurate diagnosis and appropriate treatment. This applies to endocrinologists who only seem to have an understamding of diabetes, and even then they are not exactly great.... Indeed some patients might waste GPs' times but this goes both way since seriously ill patients are ignored by gps who will insist their problems lie in their head and do absolutely nothing to help the patient get better: what a waste of time for genuine patients who are simply negleted by doctors because it is beyong their competence and they do not have the honesty to admit so. Arrogance in abundance.
At least he didn't threaten you with imminent death from heart disease as mine did when I wanted to go up from 50mcg to 75mcg ! He refused point blank, (tsh 3.88), although I have to say I did it anyway, and feel much better for it.
Do you think that you will tell him before your next blood test with him?
If not, he will still think you are on 50mcg, and as your TSH should go down and T4 rise, he will think he was right to keep you on 50mcg, or worse still, reduce your dose further. 🙁
I didn't know about testing 1st thing in the morning, not taking levothyroxine beforehand or testing on empty stomach until I started reading on this forum (also didn't get proper results, just no action, got 3.88tsh by testing privately this summer) so now, fully armed, I will do everything right for the test in Nov and I'm guessing it will go up even with dose increase. In any case, will continue to do what feels right for me re dosing.
Good grief! TSH of 2.9 is high! I had planned to make a similar request next week. Cannot understand why thyroid results (or rather, lack of) are treated as state secrets! The basic premise is so simple......low TSH: high T4. It's not rocket science!
Things are hard enough without having to beg for help.
Hope the increase helps...and that your GP might be more open minded from now on! The fork lift is a great idea.....
Good....hope the improvement lasts. Must admit I upped my dose with meds I had "in stock" but at 125 mcg my TSH is still on the high side and T4 low...and I still feel "rubbish"....so back to my friendly GP with fingers crossed! Afraid to fly solo and risk a further increase without backing.
Laboratories are refusing to test T4 in this area despite doctor requesting, begging etc, I don't understand how they can over ride a clinician its crazy
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People on NDT and Levo combo - has this raised your ft4 and made you feel better?
High TSH despite high FT4
Low FT4 - below range
Why are FT4 and FT3 stuck at the bottom of the range despite increasing Levothryoxine? 
