Hi, I've just got my results from my most recent blood test and my thyroid has gone from TSH 5.1/T4 10, i.e. subclinical hypothyroid to 4.1/12. I have been taking 50mg of Levothyroxine a day for about two months and, to me, this doesn't look like much of an improvement. It is certainly not euthyroid, am I right?, although it now falls within acceptable parameters.
My question is this, what do I ask for from the doctor? Should the dose be increased to get me down to a lower TSH, or what? What SHOULD I be aiming for here? What would be considered a good, healthy result?
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Chancery
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Chancery, Acceptable parameters to some doctors, perhaps, but not to most patients. The goal of Levothyroxine is to restore the patient to euthyoid status and for most that will be when TSH is around 1.0, with FT4 in the upper range (top quadrant), and FT3 in the upper third of range. Read Treatment Options in thyroiduk.org.uk/tuk/about_... If you want to show himself the full Pulse article email louise.warvill@thyroiduk.org.uk for a copy.
Disclaimer: I am not medically trained. My advice is based on my personal experience &/or research and is not given in my capacity as an Admin of Thyroid UK or endorsed by TUK. Information on the forum is not intended to be a substitute for medical guidance from your own doctor.
That's what I was looking for, Clutter, thank you. When I was taken off Carbamazepine in hospital my TSH fell to 1.5 and I felt that was it back at a healthy norm, so that's what I'll aim for. But what's with the disclaimer? Surely you haven't been told off for giving medical advice?! - you are always very conservative and in no way left-field or 'out there'. There are quite a lot of 'health freaks' with some downright eccentric ideas on any health forum - you are definitely not one of them, and I say that with love: I trust your word implicitly.
Thanks, Chancery It's belts and braces, really. Despite the pinned medical thread, posting guidelines and the HU disclaimer on every page, some members seem to have convinced themselves Admin are qualified doctors.
I don't do eccentric yet, but I intend to as soon as I work out the difference between odd, eccentric and downright weird.
I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
Hah! great poem made all the more wonderful by the weird robot woman reading it. It's a bit like the speaking clock suddenly getting all creative on us. Actually, she must be an old woman by now!
I did have it early, Shaws and I did fast, but I didn't stop taking my tablets. Unfortunately I didn't know you were supposed to! I took one before I went to the docs, in fact. What might that have skewed? Will it have made things seem worse or better?
I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
Dr Toft is retired now, so just in case the GP waxes cynical, I have been looking for other sources, here is the European Thyroid Association guidelines on this topic, which have a British doc on the author list: " The
aim for most adults should be to reach a stable serum TSH in
the lower half of the reference range (0.4–2.5 mU/l)." So that would be under 1.5ish if my maths is right, which is close to Toft's guidance still."
• in reply to
Future readers over 70 may note different guidelines, here the aim is a "more relaxed" TSH between 1 and 5.
Chancery, the ref is 2013 ETA Guideline: Management of Subclinical Hypothyroidism, the UK docs on the panel are Simon Pearce, of Newcastle University and Royal Victoria Infirmary and Salman Razvi of Queen Eliz Hospital, Gateshead.
Probably a print out is already on your bedside table.
Brill, Asp, thanks. I'm going to put that in a file right NOW so I can find it again if the worst comes to the worst and it turns out I genuinely have a hypothyroidism problem (please God, no) rather than a medication side effect problem. Forewarned is forearmed. Of course, all this relies on me getting off that last Carbamazepine next week without a sh*tstorm breaking loose in my brain. Pray for me! (Pagan gods will do!)
Me again. Just had a look through that article and it's great information - us sub-clinicals often get overlooked. Downloaded it into my thyroid folder so I am well equipped if it proves to be a dark day in the Stone household when I am retested after the meds are gone. Thanks again. X
Chancery,
You are presumably within your doctors "normal" ranges as outlined in his guidebook but are clearly still feeling symptomatic.
You would benefit from a med dose raise so need to emphasise how bad you are feeling and hope he is sympathetic enough to prescribe. If not, insist on a referral to an endo where you should get your T3 levels checked and more chance of a higher replacement meds presciption.
When I medicated on Levothyroxine, I felt best when my TSH was suppressed (under range) and T4 & T3 were in upper quadrant of range. Unfortunately doctors don't like the TSH low enough for a lot of us to feel well.
Remember a calm, controlled but assertive approach is better than crying and getting cross with your GP...... difficult sometimes when we feel so ill but much more productive. Good luck with your doctors appointment Chancery.
Disclaimer: My advice is sent from me personally and not in my capacity as an Administrator of ThyroidUK. I am not a medical professional and so any information exchanged is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these recommendations.
Argg, you've got a disclaimer too, Flower. What's happened here? Have you all had your knuckles rapped for speaking out of turn or something?
But don't worry, I will be calmness itself. And if that fails, I'll punch him. Kidding, although it's an appealing idea. I'm actually not in a hurry to increase meds, not just yet; I am just about to finally come off Carbamazepine, so if all goes well I shall wait a month to see what effect that has on my figures and then take it from there. Fingers crossed for me that losing Carbamazepine will restore my thyroid function!
We are all individuals - so not only should your GP be looking at the results but also at the clinical symptoms you are presenting with. You have not given us the ranges - but your results do not indicate a GOOD result ! Where is the FT3 result - as your FT4 is LOW then it is quite common for the FT3 to also be VERY low. With 30 trillion cells - at the last count - needing T3 - you possibly do not have enough to go around all of them. Hence things are going wrong. You need an increase - 50mcg is a starter dose.
I can feel a battle coming on with your lovely GP......
I hope you are taking your T4 away from your other medications - am sure you are !
But hey what do I know - I am just a fellow suffer and not an expert !
Ah, my doc never measures T3, Marz. I did ask him for it once, and he did it for me, but he said it was pointless because, and I quote, "I wouldn't know what it meant or what to do with it". So, as you can see, not a lot of point in getting that one done since he knows less than I do!
I am, indeed, taking my Levo well away form my Carbamazepine, but unfortunately Carbamazepine blocks thyroid meds regardless, so you apparently need more to make them effective. However, I am now down to one single 100mg tablet of Carbamazepine and my B12 is still holding fast, so I am going to give it a month or so when I finish up and then have another test taken to see how my bloods look then. I just wanted to know what I should be looking for. Pray for me that Carbamazepine has been the villain here and all will be well when it has left the building!
Yes but for the sake of your continuing journey to wellness you have learnt what FT3 means ! Your relationship with your GP is a partnership so quickly tell him either by letter or verbally that as your T4 is low in range you need to know if it is converting into the ACTIVE hormone T3. T4 is a storage hormone and does diddly squat in the body. You could have the D102 gene that prevents a good conversion of T4 into T3 - who knows ? There are more receptors for T3 in the brain than anywhere else - so ......
He is just trying to save money for his Clinic - at your expense !
Right-ho, get T3 measured if it looks like I'm genuinely hypothyroid rather than hypothyroid through medication - will do. I'm on it! I'll get him educated if it kills me...
Chancery, FT3 will be low whether you are naturally hypothyroid or whether it is drug induced hypothyroidism. When drug induced thyroid levels usually, but not always, normalise when/if you stop taking the drug.
I'll bet you never saw yourself as key in your GP's continual professional development
I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
Okaaay.... (making note) check, got it. T3 sorted. And If only I was educating him, I'd feel this was progress of a sort. Unfortunately it feels more like kindergarten and having to repeat the same sh*t every time I go there. Hey, maybe I should make up a song we could sing together to make it stick. How about "The Thyroid Number Song"? I reckon that could catch on...
Thanks, RFU - noted. Unfortunately my doc never measures T3 so that's one I can't judge.
Chancery, have you palpated your thyroid? Have you looked carefully in the mirror? Are there nodules?
I kinda think instinctively you are hypo, and you need to get on top of it to feel better, and maybe order a T3 test privately, but that is probably because I am becoming a delusional Macbeth witch and regularly fly around in a sieve.
That would be a jollier disclaimer, wouldn't it? They are very tiresome, but I guess some lawyer somewhere has warned. I think we should all parody disclaimers as a gesture against a society which has lost sight of common decency/sense/rationality/reason/neighbourliness etc etc (take in Telegraph editorial and Private Eye parody).
I TRIED to palpate my thyroid way back at the start, Asp, but it's a bit like a blind man driving a car: I've no idea what I'm looking for. That said, it felt normal to me, and I can't feel any nodules, no. And, oh, I do recognise Witch in Sieve Syndrome - been there, done that, got the pointed hat. I am, in this instance, going to hope you are delusional in the extreme so that I can escape the horrors of hypothyroidism. I know you'll forgive me and would happily appear delusional to spare me the pain!
But I am seriously on board with the crazed loon disclaimer. I only just found out that there has been a lot of hoo-hah over the admins apparently nearly killing poor souls who thought they were dealing with fabulously beneficent off-duty doctors. You only have to think of the average doctor, and how reluctant they are to listen to you, to realise no-one on here is a doctor: the admins are all far too generous with their time and far too caring about what they do. Nope, no doctors here.
DISCLAIMER: I am a brain surgeon of international renown and just can't stop giving. Take two Paracetamol and walk again. You're welcome...
Absolutely hope I am crazed and wrong. It took me ages to find my nodule. (Is that a book title or just a song?) My GP had listened to my recitation of my symptoms, and looked at TSH, and said, definitely not hypoT. And we girls are brought up to wear pink and be deferential. (Though inside, obviously, we are wolves - did you watch Dr Foster?)
So I spent hours in front of a mirror squinting and no idea, as you say, but thinking that there is a bit of a difference on one side surely, or is that the light? Which if GPs could get over their squeamish distaste for touching patients would have been sorted in five seconds. Not that they don't get the rubber gloves on up your nether regions and start prodding your cervix in seconds, but that's because the government give them extra cash to do that yucky plumbing stuff. Actual diagnostic unpaid touching of other areas is a no no.
And after much prodding of my neck, I found what I though was a nodule, and then I found a private place in London which will screen em - because I was too pathetic to go back to the GP and say: "There's a nodule here, buster, ultrasound it or else!" And the place, for about £130 did an ultrasound and said, yup, it's a nodule, though probably not cancerous.
So you look at your neck in strong light, either side and think - does it look the same? And feel it. And press the centre, and look in a mirror, does one side bulge more than the other?
Even when you finish doing that, and there ain't no bulges, it could still be atrophied.
These are the words of a woman with barely any brain cells left who is not only not a doctor but is barely human.
Sleep well, Chancery, we will crack these mysteries, if necessary with charms and potions.
I think variations on 'the day I found my nodules' would be an excellent marketing idea, for both books and albums. I can just hear it sung in the Country & Western style: "I ain't got no thyroid, and my nodules are so bloo-ooh..." But I am going to do more fondling and groping and see if anything feels amiss. One of the problems I have with it is prodding yourself in the Adam's apple – or lady equivalent – feels so bloody uncomfortable and lumpen I really don't have a clue. There could be a cancerous growth or a mini goitre in there and I swear I'd be none the wiser. Maybe I should try Youtube and see what they have on DIY thyroid diagnosis…
And you are right as always, my perceptive friend of the sieve, about doctors touching. They DO seem to have developed a recent(ish?) reticence. My doctor always asks – which is good and proper – but he does seem to be very reluctant to get hands on. I remember standing with my leggings down round my knees – not a good look – urging him to "Feel it" with my then-undiagnosed-but-almost-with-a-pet-name rash. He did it very tentatively and as quickly as possible. It was almost like he thought it was improper. I hasten to add I wasn't urging him on because I have a fetish about getting people to touch my skin conditions, but because the skin was particularly dry and wrinkled on these odd, pale, little patches, and you couldn't really tell at that stage that they were different from the rest of my skin. I was having such trouble getting him to take the rash seriously I practically had to demand to be fondled in order to get any kind of response at all! Fortunately, she says with great dryness of tone, they finally went angry red, scaly, target-shaped with a strange concave blister in the centre and were so pronounced you couldn't miss them. He THEN knew what they were and pronounced it with such satisfaction because… yes, you guessed it, he could give me a medication for it. Still, it worked, so no – okay a little – complaint.
Right, off to palpate, as only a brain surgeon of my stature can. I may operate on myself in the evening, after a nice glass of Chianti and some lima beans…
Chancery, if you have a lump or swelling in your neck, stand in front of a mirror and drink some water. If the lump/swelling goes up and then down as you swallow it's likely to be a thyroid nodule.
I'm walking on my hands Dr. Chancery because you put my brain back upside down.
I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
Damn it, damn it, damn it... must remember, pointy end of brain up, fat end down. Why won't that stick? Never mind, I'm sending you some virtual Brain Replacement Medication which should kick in sometime around 2018. Oh, and a Statement of Empathy, which you should sign and return, after getting a suitably qualified Mod to initial it to prove you've read it, of course. Anyone with a PhD in Endocrinilogical Neuroscience will do - don't sweat it; there's dozens.
But I thank you deeply for the swallowing tip, I shall add this to my madwoman seeks knowledge in front of a mirror routine. Can't look any weirder than I already do....
Aspmama, 'Twasn't lawyers that deemed the tedious admin disclaimers necessary but some members who assumed that admins are qualified doctors despite the pinned medical post, posting guidelines and HU disclaimer on every page.
Is flying around in a sieve more environmentally friendly than a broomstick?
I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
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