I am desperate for advice on where I stand with my GP. I cannot have my dose reduced as I finally feel almost well. I am on 100mcg and my TSH was 0.12 ref range 0.27-4.2
Ft4 19 ref range 12-22
They want to drop me down to 75mcg but I've got a call back from the doctor this morning regarding this. I was on 75mcg before and my tsh was at 5 I've been on 100 for about 2 months now and had 1 normal blood result about a month ago.
I've got hashimotos so I know it does fluctuate. I'm wondering what I can hit my GP with to make them see my point of view!
Thanks in advance!
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Letsbegintoday
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Hi - Your results are pretty similar to mine. I think my last TSH was 0.11 in September 2019 and I am on 100mg Levo. I too had the Doctor needs to talk to me to discuss results letter. I made appointment to see the Dr who wanted to reduce my dose. To be honest I just declined and said if anything I think I am still under medicated so won't be reducing from 100mg. The Doctors are obsessed with TSH, that is all theyre interested in. Just say thank you but no. Best of luck
Are you newly diagnosed? Don't be held to ransom, just say you are starting to feel well and don't want to go backwards. I have had thyroidectomy, 30+ years ago and my levels are never the same but TSH has always been under range - same battle every time with the GP.
He/she believes that you are now verging on being hyPERthyroid due to your very low TSH. I believe that's what they're told.
Tell GP that because you've already been diagnosed as being hyPOthyroid you cannot become hyperthyroid. The aim is a TSH of 1 or lower if hypO not somewhere in the range (up to 5) as most doctors believe.
Tell him you know more than him as you are a member of Thyroiduk.org.uk (if not join) and kow that the TSH is from the pituitary gland which rises if your body isn't producing sufficient thyroid hormones and as you have been diagnosed as hyPOthyroid, the latest shows that you are taking thyroid hormone replacements for which the aim is a TSH of 1 or lower. You are feeling so well you will not reduce your dose and you don't want to be forced into sourcing your own.
Give him a print-out of the following and say you are a member of Thyroiduk.org.uk If not you can become a member and you get lots of help from them as there is only three running the office and everything else to do with trying to raise awareness amongst the medical profession.
Due to going by blood tests alone and not clinical symptoms that's why mistakes are made by doctors, i.e. the only look at the TSH and increase/reduce dose according to it.Give GP a copy.
Does your doctor only test TSH? That is so wrong because the TSH rarely accurately reflects thyroid status. Tell him you refuse to reduce your dose until he's tested your FT3 to prove that your over-medicated. That is the most important number.
Your doctor is not there to dictate to you. He is there to advise you, and if you don't chose to take his advise, then you should have an informed discussion about it. If he can't tell you why he thinks that TSH must be in-range - or if he doesn't really know, a lot of them don't - then you can't have an informed discussion, can you?
Remember to get the earliest appointment for the blood draw which is a fasting one and allow a gap of 24 hours between last dose of levo and test and take afterwards.
I cant believe it just got off the phone this doctor is so clueless harping on about TSH being the only indicator of thyroid function and t3 and t4 are irrelevant as they go up and down. I said I want T3 testing before a dose decrease next time and he said no it's not indicated. Then I said ok can I have an endocrinologist referral and he said no that's not indicated either as you said you're feeling well at the moment! He said I can stay on 100 and have another blood test then see but he was so rude kept cutting me off mid sentence.
Doesn't GP know that TSH goes up and down by as much as 75% during the course of a day. Free T4 is pretty stable in comparison and free T3 goes up and down during the day but usually not as much as TSH
I was actually a bit speechless when he said that as it is so obviously a load of rubbish! He was clutching at straws trying to find a reason not to have T3 tested.
I’ve posted the below about Levo and TSH before a few times, so apologies if you’ve read it already, but just in case it helps, I have hashimotos too - the info may be useful in your battle to be well.
I see an endo privately which I know isn’t an option for everyone, but he’s very understanding and is a thyroid specialist.
Last time I went to see him my blood results showed my TSH is now plunging into the nether regions, (update - it is now 0.03) my T4 and T3 are about 50-55% of the way through the range (update they are now 70% or more thru range) and I still feel like cr*p, though not as cr*p as the cr*ppest I’ve felt. He is happy for me to continue to increase Levo despite the fact that my TSH will go lower and it is already below the reference range. (Update - I have continued to increase, my T3 has finally jumped and I now feel well.)
If you have been severely hypo or hypo for a long time then TSH is no longer reliable in the way it reacts when you take T4. My endo (a thyroid specialist) has said to me ‘Let’s forget about the TSH, it’ll probably never recover.’ Magical words!
What he said was interesting - he said most Doctors understand underactive thyroid as that is relatively straightforward, but they don’t understand hashimotos, which is more complex to treat as it is difficult to stabilise your levels. GPs just treat it in the same way as underactive thyroid but it isn’t the same. He said that the TSH does strange things with hashimotos as the pituitary doesn’t know WTF is happening as the thyroxine from the thyroid waxes and wanes. So basically the pituitary loses the plot and TSH tends to go low - the whole system goes haywire. Also if you have been hypo for a long time, the feedback loop doesn’t work properly anymore. We also know that you can be taking lots of T4, but if you don’t convert enough of it to T3, you won’t feel any better.
My endo also acknowledged what I have always thought that despite doctors saying synthetic thyroxine is just the same as our own, it isn’t and many struggle to convert it. This means the TSH responds to the level of T4 and goes low, but we actually struggle to manufacture T3, so need to take more of the synthetic T4 stuff than we would have to produce of our own - even more than the normal range for T4 for some people to be able to make/convert into adequate active energy and therefore to feel well. This is the reason the T4 and T3 test are so important rather than the TSH. Doctors have to realise we are not ‘normal’ and don’t have normal thyroid function - we don’t produce enough thyroxine - so we can’t be measured against the ranges of ‘normal’ people as we take a synthetic version of thyroxine once a day! Our thyroid does not respond to need, we take Levo all in one lump for the day, that also is bound to send TSH low - not rocket science really.
The combination of hashimotos and synthetic T4 creates a perfect storm. Your pituitary goes AWOL and you may struggle to do anything with synthetic T4. Therefore other than T3, patients should not be assumed to be well just because they fall within the ranges and a low TSH is fine if there are no signs of being over medicated e.g. high FT3, heart racing, tremor etc.
There are physical tests your doctor can do to check if you are over-medicated - pulse rate, check the heart rhythm, extend your arms and see if there is tremor in the hands etc. If he hasn’t - why hasn’t he? He can’t just reduce your meds on a figure and not actually look at you! You can take your temperature and heart rate on waking every morning and record these to show your doctor as proof too. Despite my TSH being low, on waking my temp is usually 35.2 and my heart rate 56! He has to check you are over-medicated, not just assume you are.
He should be investigating why you are not symptom free and feeling better despite the stupid TSH reading. Not responding to a piece of paper rather than a patient. He needs to turn away from his computer and look at you. I would ask - if you insist on reducing my Levo what are you going to put in its place to alleviate the symptoms I will feel? Will you refer me to an endo for a trial of T3 as you are identifying I cannot get well on Levo as I cannot take the amount I need?
Do battle - and good luck. Tell your doctor to dose the patient not the blood test. If you were over-medicated, believe me, you would know. When I was over-medicated it was scary, heart racing and pounding if I just stood up, feeling nauseous etc- you would want to reduce if that was the case! 🤸🏿♀️ 🥛
Thank you for that I haven't heard it and its very interesting, it gives me hope that your endocrinologist is so supportive. Would you mind PM me their name and where they are in the country?
I feel as the GP just refused me an endocrinologist referral I may have no choice but to go private.
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