Following a telephone consultation with the GP after a blood test I have had to reluctantly agree to reduce my levothyroxine dose from 125mcg to 112.5mcg. My blood test results are:
TSH 0.007 (0.34 - 5.6)
Free T4 13.1 (7.7- 15.1)
Free T3 5.00 (4.3-6.8)
All tests within the last 4 or more years have had results very similar. This GP says I am on too much levothyroxine & that I am at risk of a myxedema coma. I’m confused. I thought a myxedema coma was from untreated hypothyroidism? I’ve reduced a few days ago & ever since then I’ve had a nagging headache. Could this just be my body adjusting to the lower dose? I feel much better on 125mcg but if I am in danger then I suppose I have to reduce.
Written by
Sarahlouise1980
To view profiles and participate in discussions please or .
Your GP is an idiot, Myxedema coma, occasionally called myxedema crisis, is a rare, life-threatening clinical condition that represents severe hypothyroidism with physiologic decompensation. [3, 4] The condition usually occurs in patients with long-standing, undiagnosed hypothyroidism and is most often precipitated by infection, cerebrovascular disease, heart failure, trauma, or drug therapy.
Patients with myxedema coma are generally severely ill, with significant hypothermia and depressed mental status.
So you are not at risk, as its a rare life threatening complication of severe untreated hypothyroidism. Not someone on thyroid meds being treated, unless severely undermedicated.
As ever this GP is just looking at your TSH and not your thyroid levels which are both well within range. I'm not a medic and even I can work it out.
It's not just that he's only looking at her TSH, because with myxedema coma her TSH would be high. It's just that he doesn't have the slightest idea what he's talking about!
Sarahlouise, you're only over-medicated if your FT3 is over-range, and yours is nicely in-range. Ask for a second opinion, write a letter of complaint to the practice manager. This doctors is too ignorant to be allowed to treat patients. Get your dose restored as fast as possible - put it up yourself if you have too. The longer you're on the lower dose, the more difficult it will be to get back where you were.
Thank you for the advice, I definitely think I feel better on the higher dose, I’ve certainly never suffered headaches until reducing the dose. I’ll make an appointment with my usual GP and make sure I don’t see this one again!
Thank you so much for your advice. I thought as much. It is worrying when I’m more educated about my condition than the doctor! She is not my regular GP, I will make an appointment with him and make sure I don’t see her again.
My doctor - in his late 50's made a statement to me. I said 'No doctor that is not correct you've made a mistake' he has never rang me again as he was aware I now knew more than he did.
After a similar conversation, my doctor, at least, was grown up enough to admit to me that I obviously knew more about my thyroid condition than she did and was happy to let me continue adjusting my dosages of T4 /T3 myself and refrain from lecturing me about osteoporosis and AF… 😀
That was a good response from your doctor to admit that you knew more than she did.
I think it's a pity that it would seem the majority of doctors, whilst being trained - lack being given sufficient knowledge about how common thyroid disease is, and should have had more training about what symptoms can arise and how best to relieve them.
I don't understand why most of these doctors start having hissy fits when you tell them you've researched your condition... I suppose it's because they think you're undermining their "authority" when all you're trying to do is find out about something that affects YOUR entire existence from day to day when all they've had is a half-hour lecture on it during which the majority of them probably fell asleep!
My old endo (sadly now retired) was another one who was quite prepared to work with me, unlike his stream of replacements (I never seem to see the same one twice) who do go into the lectures about osteoporosis and AF every time they spot my non-existent TSH, which has been non-existent ever since my old endo put me on T3/T4 combo in 2011 and which I was allowed to adjust the dosages of! Numerous DEXA scans and the ability to check my ECG daily on my watch have thrown up no evidence of either condition! It annoys them beyond reason! And because I'm in Wales and they're in England they can do nothing to take my T3 away either, which annoys them even more! 😂
As most of us are female, I am convinced that there is some fury that his geriatric patient knows better than he did. He was appalled, as was his wife (Practice Manager of course) and they can't admit it can they?
When I was trying to move from my 50mcg starter dose Levo to 75 as part of titration the GP was reluctant because my bloods were ‘in range’. But when I explained that 50 was just a starter dose she replied “Well, we don’t really know anything about thyroid, but I like to treat you as an individual so I’ll raise it”. Success!I then asked about a blood test in 8 weeks time.
“0h, no, they don’t like to test thyroid again too soon, we do it annually” . Back to square one.
My GPvwas equally useless. He bought the practice and then continued to tell me at every blood test that I was overmedicated and so reduced my Levo. It wasn't until I was so brassed off that I found this Forum and was taught how I should have been treated, that I realised he thought a raised TSH was caused by me having too high a dose of Levothyroxin!
He refused to help me with a T3 trial too. He said I should never say T3 to him again, because it is an illegal drug!
Most GP's don't know their head from their elbow, as far as Hypothyroid goes unfortunately.
I will say to you that your GP is an idiot and as he has made that statement avoid him like you would the plague.
To make a statemernt like that about T3 - as he believes it is an illegal drug - I would think it is he, himself, who is taking an illegal drug because it is just nonsense altogether.
Obviously he is unaware that our heart and brain contain the most T3 receptor cells, otherwise we, human beings, cannot function without it.
T4 (levothyroxine) has to convert to T3) but many of us cannot do so effectively. All T4 did for me was to cause terrible palpitations that even the cardiologist couldn't figure it out and was thinking of putting an implant in my heart. When I took T3 my body calmed immediately and didn't need a heart monitor and I'm thankful to say I feel well, my body is calm and am happy.
Staying on current dose and Undertake to get FULL thyroid and vitamin testing done…
if Ft3 isn’t over range …not over medicated
Take full private test results back to GP to discuss
The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :
nice.org.uk/guidance/ng145
"Your responsibility
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "
If GP remains unhappy about suppressed TSH, then will need to see a recommended thyroid specialist endocrinologist who is not TSH obsessed
It would be funny to actually send this one some sort of muppet of the month trophy! I imagine there’d be huge demand and nominations every month for a suitable candidate!
Have you ever seen an endocrinologist? My GP altered my medication, stopped T3 as worried about effect on heart. Finally managed to see an endocrinologist. He said only endocrinologists should change medication but don’t know situation if only on thyroxine. My daughter is hypothyroid but her GP luckily goes on how she feels as long as levels in or slightly out of range. It’s so frustrating for us. Hope you get sorted.
I was told by my endo secretary I could demand to be referred back to then when my stupid Gp thought it appropriate to reduce my dose of Levothyroxine from 125 to 75 in one fail swoop. I told her I was not going back to that after suffering 9 months of getting optimised. The next time I demanded to be referred back to the endocrinologist on the advice of the secretary - she backed down pretty sharpish. I switched to someone else who was much better. So I’d say you can ask to go back to the endocrinologist with any change in dose be it Levo or T3 or both.Most definitely any you don’t agree with.
Your tsh seems very low given your t4 and T3 are not high in the ranges. Did you take your meds just before doing the blood test? Rdcommended on here to take blood tests first thing, 24 hours after last dose Levo.
Your levels are as good as identical to mine. The hell II've gone through with my GP reducing thyroxine when they see them has ruined my relationship with the practice. Modern apps have also permitted me to provide evidence when they have literally lied about doing so. In the past year since I moved back to thyroxine from NDT (I've been self-managing it after starting with Dr Peatfield), my GPs have bullied me relentlessly, refused to sign my medical exemption certificate, refused to provide medication when mine was running out as they said I would have to wait for the endo to sort it out, and advised me to reduce my dose to such a level I could barely walk through their door for blood tests I was so exhausted. Luckily the endo, perhaps based on the blood test results I've recorded myself for the past 10 years, said monotherapy does not work for me and has put me on combined t4 and t3 since August. Even so, the GP overrules his t4 dosage as soon as they see my mildly suppressed TSH, even though t4 and t3 are only just in range. I only feel well with t3 and t4 at the top of their ranges...
I’d demand you are referred back to the endo each time the GP attempts to interfere. Mine were very supportive when I had problems like this. This one backed down when I said I wanted to be referred back to the endo on the advice of his secretary.
Yes, well. I've got my GP trained, now. It's taken four years. Sacked my first endo three years ago. Apart from six months on Levo when I couldn't get NDT I've been fine thyroid wise. In fact I was generally fine apart from trashing my knee falling on a wet concrete ramp in December. Until I got zapped with amiodarone for AF in a failed attempt at a chemical cardioversion. That was after I rocked up in cardiac emergencies with my lungs with more water than air swimming around. The AF was long standing but paroxysmal and asymptomatic until it wasn't.
So after the attempt with first digitalis ( nice natural 14th century remedy) then the amiodarone, followed an attempt at shocking me. Which kept me in sinus rhythm for oh, nearly fifteen hours. Which has thoroughly messed up my thyroid levels and conversion. Busy sorting it. Hospital cardiologist is aware what I am doing (titrating the NDT dose after having to change from Thyroid S to Armor) and carefully not noticing apart from monthly tests of ft3 , ft4, and TSH. The endo is staying well clear of me. It's an interesting process, because the amiodarone has a ridiculously long half life, and needs a large loading dose. Plus it didn't do anything for me other than giving me several of the possible side effects. Still, at least the insomnia gave me time to do some reading. The effect on my thyroid levels was uncomfortably dramatic. Practically instant hypo.
Ho hum. So now, as the levels go down I'm having to adjust the thyroid meds simultaneously with the changing blood levels of anti arrythmia drugs (which there is apparently no simple way of measuring) So, back on the beta blockers and enough frusemide to empty a water tower. ( IV it works in about five minutes. In a commode in emergencies. With a very small privacy screen. The gift that keeps on giving...)
Then I've got another shock programmed in a couple of weeks in the slightly forlorn hope of getting me into sinus rhythm before doing an ablation. With hopefully enough amiodarone still in me to help. You couldn't make it up if you tried. At least I'm getting physio for the knee.
I agree with what has been said, your dr is an idiot. The myxedema coma would only occur, if you stopped taking your medication and had no thyroid function at all which is very unlikely. I was in a coma as a baby and lucky to be alive. I have no thyroid function at all and have to rely on medication. I always say we can live without our thyroid gland but not the hormones they are supposed to make, they vital to life.
However, Looking at your results for T4, I can see why they have been reduced. But as usual the GP's especially in the UK look at TSH and free T4 only. Yours are well in range. Sometimes, it happens. It might be in the future you might need another increase. Your T3 levels are good. If you are not happy, seek a second opinion. Just be careful about increasing your dose back until you have spoken to your Dr as when it comes to prescriptions, they are pretty funny about these things when it comes to getting a repeat prescription. The headaches might be your body adjusting or it can be that your original dose was too high (from my own experience of 60 years, being on too much, affected my eyes). But I am not a "medical expert" only go on my own experience. Take care and let us know how you get on.
My GP has been trying to take over my levothyroxine medication, and so farI have resisted, as my hospital consultant has warned me against letting them do this. In fact he wrote to them to say That he is the one managing me and my medication.
Wow - I continue to be amazed that GP's are allowed to treat thyroid patients in the UK. In most European countries, they must refer you to endos. (Many of which unfortunately are not better than the GP's....) Someone suggested a brochure for doctors - very good idea. Another idea - start a thyroid training course for doctors and make it free or very cheap for them to attend. We pick the professors and experts!
Oof. I made an account literally just to respond to this. It's a month old so IDK if you are still checking, but for anyone else who came here through a Google search like I did. I'm SO surprised everyone agrees with you and that nobody either has the balls or knowledge to say what I'm about to tell you because it's the first thing I thought of:
your headaches are placebo/hypochrondria. Levothyroxine has a half-life of one week. You wouldn't even start to feel the effects of forgetting to take your ENTIRE meds for a week (I know, I've had to forego them a few times for a week and day 6-7 is when it starts to hit). You would never feel any effects whatsoever after 1-2 days whether you had an increase or a decrease. The full effects of an increase or decrease take 4-6 weeks and 12.5mcg difference is SO MINISCULE that it would definitely take several weeks to be felt.
Your headaches are from your stress/being upset/fixation with your dose. While your doctor may be stupid about the coma thing (I know nothing about it) and while you may for whatever reason prefer to stay on a higher dose, your reaction is not related physically to your meds.
Not to mention, I am shocked people here are calling your doctor an idiot for wanting to SLIGHTLY lower your dose; you are bordering on hyperthyroid, induced by your meds. I've been there and *I* asked my doctor to lower my dose. WTF? Nobody wants a 0 TSH. That's very dangerous for your heart. One swing of hormones and you're on the other side. While hypothyroidism is really no fun at all, it's not nearly as dangerous for the body as the other side.
xhoneybear how nice of you to join and give us a display of your many areas of ignorance. if you care to stick around and do lots more reading, it may help you understand some of the more subtle aspects of thyroid disease and individuals needs for treatment , which you are evidently unaware of at present .
...... in the meantime please try to refrain from being quite so unpleasant .
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.
Gp wants to change my Thyroxine dose
My GP has reduced my levo to zero!
GP wants to reduce dose
Reduced Levothyroxine Dose - Are my symptoms normal?
