Starting dose too low ?

Hello again.

My GP started me on a dose of 25mcg of levothyroxime. In fact it was his locum. I still feel unwell after three weeks haven't really noticed any improvement whatsoever. I know increasing the dose has to be done slowly but I am now 7lbs heavier than when I started taking the levo - could I legitimately go back and ask for the dose to me increased ?

Secondly, the receptionists have told me that I can only have my thyroid bloods done one every three months...really ?

Thank you in advance of your hoped for responses, TBH I'm getting a bit worried now, this seems a really big deal, reading through your posts. I lost my hair years ago, I've put on three stones in a year, my joints ache, my throat is sore...what to do ?

Raps x

14 Replies

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  • yes 'absolutely'

    even their 'bible' (the prescribing book called BNF) tells them they can start you on 50 to 100mcg straight away (see special conditions below)

    so go and ask for the 'well deserved' dose :)

    xx

    below is an extract from BNF:

    Dose

    adult over 18 years, initially 50–100 micrograms once daily, preferably before breakfast, adjusted in steps of 25–50 micrograms every 3–4 weeks according to response (usual maintenance dose 100–200 micrograms once daily); in cardiac disease, severe hypothyroidism, and patients over 50 years, initially 25 micrograms once daily, adjusted in steps of 25 micrograms every 4 weeks according to response; usual maintenance dose 50–200 micrograms once daily; child under 18 years see BNF for Children (section 6.2.1)

  • Thank you so much nobodysdriving.

    Does this mean my GP isn't sympathetic/cares very much about thyroid disorders ? I am 53 tho. He hasn't told me to come back if I don't feel better, just loose some weight ! He did increase my script length for prozac from 30 to 60 days supply; I've previously had to beg to be put on them but now he has two blood tests that back up hypothyroidism, he's happy to prescribe two months at one go ! Don't listen to the patient, just go by the science, I suppose - but that apears to be altogether unhelpful, reading people's posts, here.

    Do you know about the frequency of blood tests ?

    Anyone ?

  • Often it's the lab that refuses to do them more often than every 3 months. My previous GP told me about that. She wanted to do a test sooner (this was when I was pregnant) but knew that the lab would refuse so we had to wait a couple more weeks.

    Your GP might not be unsympathetic, just lacking in knowledge. Some GPs are happy to be educated though, especially if you have a reputable source to refer to, so don't give up hope just yet. Some GPs are learning along side us, but you will find that some just don't want to know which is very sad.

    I hope you get a dose increase very soon!

    Carolyn x

  • Many doctors are not clued up about hypothyroidism I am afraid.

    Most adults start on 50mcg levothyroxine. The starting dose of 25 mcg you were given is much too low for most cases and ought to be increased by 25mcg to 50mcg, as being left on too low a dose can actually make you feel worse eventually.

    Please go back and ask for an increase to 50mcg, which is still only a starting dose.

    After 4 or 5 weeks on 50mcg your doctor should be considering your response, by blood test if necessary, then increasing the dose as necessary.

    He will probably be monitoring your progress by the TSH like most doctors, about which only a blood test can give him information so he should have told you to come back in roughly 4- 5 weeks, it varies, so that he can gauge your progress usually by a further blood test. When you have reached a suitable dose you should lose the extra weight without even trying, as the extra weight is because the hypothyroidism has lowered your metabolic rate.

    You will really need to start learning about hypothyroidism and its treatment even if only in self-protection. Please consider going to thyroiduk.org

    They have a wide range of very helpful informative sheets available on their website. I strongly advise you to read them as it does seem that your doctor is rather clueless, just as mine was.

    It would be so useful if you could post on here your blood test results, as well as the reference ranges, important to quote them also as labs use different ref ranges.

    I do hope that things go well for you. Start by learning as much as you can.

  • Thank you so much for your responses.

    Like most at this time of year I'm feeling a bit frazzled and this doesn't help, nor my wonderful job which also means this is the busy time - this lasts until March /April and leaves me very little free time. I will go back and ask for an increased dose, a medical exemption certificate ( which I have only learned of thru reading on here...) and my two blood test results, which I will then post.. It does help not to feel alone so thank you to all who have taken the trouble to respond I do appreciate it.

    Rapsx

  • We are happy to help!

    Meantime, help your thyroid all you can - avoid all sources of fluoride including fluoride containing toothpastes, mouth washes, non-stick pans,tapwater if fluoridated (ring your waterboard and ask if you do not know) see thyroiduk.org fact sheet on this or just Google "fluoride effect on thyroid", avoid fruit juices made from concentrate as the fluoridation or otherwise of the water content cannot be known; try to walk if you have the time as this is beneficial for T4 to T3 conversion. Thyroiduk.org also has a sheet on Basal Temperature which might help you monitor your own progress.

  • I must have been lucky because I got mine done every six weeks for about eight months

    Jo xx

  • Hi, I started on 25mcg around this time last year. I hadn't found this site then and waited the 8 weeks for a blood test to then have it increased to 50mcg I was told I was fine on 50mcg but I didnt feel it. I then found this site and asked for copies of blood test and manged to get increased to 75mcg and now 100mcg. If I could repeat this year I'd fight a lot harder. Please don't let them fob you off, get copies of your results and fight your case. Good luck

  • Thank you summer

    This is just the kind of support I need right now. I'm afraid I'm used to tussling with my GP, who initially pooh pooh'd my claims of early menopause at 46; then wanted me to take HRT despite my ma's many brushes with cancer; refused to prescribe anti depressants until I asked for a second opinion. He is a 'tell' not a 'consult' type of pratitioner and I'm glad to say I still have just enough energy for a fight if it results in my wellness. The testimony of someone who has trodden the path I have in front of me is invaluable and I thank you once again.

    Raps x.

  • Hi - It maybe helpful to you if you post your blood tests on this forum - others may then be able to offer you further advice.

  • Sometimes they start you on the lowest dose because your body has been deprived for so long, it needs time to readjust to getting what it needs.

  • Ah Haaa. I have felt unwell for a year. I'm over fifty. I have made an appointment to see GP on Thursday morning but am I wasting my time and his ? I'm so desperate to feel better and instead I feel like my poor hubby is getting a beached angry whale that weight watchers can't help for Christmas and work is sooo busy and I'm reading and fretting and reading and worrying and soooo tired. Thank you starfish...if you have anything to add do let me know. I do feel fortunate to be able to pick so many wise heads. Thanks everyone

    Raps x zzzzzzzzzzzzzzzzzzzzzzzzzzzzzz

  • How did ou get on with GP, did ou manage to get an increase? I have been on 50mcg for 7 years with no increase as results always within range! I too am menopausal and also on ADs. Still feel shocking but always end up a gibbering wreck at the Doctors, hence they thnk I'm depressed, and now I am so confused I don't know anymore... Hope it went well for you.

  • Aseamark, thank you for caring. He put my dose up to 50mcg and I am ready to remonstrate if he won't put it up further if I don't feel better. We have locked horns before but just like him, I have a double degree and I'm damned if he's going to make me feel inferior, which seems to be his default position. Even if I hadn't got a GCSE to my name, I know I'd feel the same. No gibbering ! You need maybe to practise what you're going to say to him/her and have a friend or partner play the big bad GP !

    I'm post menopausal from age 46. I've lost my hair. I've had periods of sustained fruit loopiness. But I will get better, with or without him because I'm a survivor and if you're reading this, so are you ! Courage ma brave !!

    Big hugs Raps x

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