What a surprise. Went in with almost permanent loss of voice, cough and feeling like I've got a lump in my throat and somehow ended up being told that going by my original thyroid test levels I shouldn't have been treated even though a well-respected endo diagnosed me. Oh and you only need TSH which tells you everything!
Anyway, it's letter time so if anyone can point me to any guidelines and/or research which says that even if a person falls within the normal ranges for TSH and FT4, but have high TSH and low T4/T3 and have anti-thyroid anti-bodies and symptoms they can have a trial of T4. Also which countries lower thresholds for treatment because he said the UK is standard. I honestly hoped that by seeing a younger G.P. in the practice he might have more knowledge. I want factual stuff if possible as he certainly wasn't going to take my word for it. I might ask in my letter for a referral to an NHS endo.
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msmono
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I'm in the same boat although my gp agrees I need thyroxine he won't prescribe because of ranges even though I was borderline. He said he is 110% sure an endo will prescribe so has referred me. Got the choose and book letter Saturday only to log on and there are no appointments showing to book. I would def press to see an endo. GPS are so worried about litigation if they don't follow guidelines
Hi, thanks it's interesting but will just confirm what the G.P already thinks, because my TSH was 3.8 and my T4/T3 was in range but low. I had very high anti-bodies and LOTS of symptoms.
I've already been diagnosed by a private endo (back in June) but I have tried to go back to the NHS as I'm on a low income. Unfortunately, I've had some results that might suggest over-replacement and I now have a suppressed TSH and above normal FreeT4. The .P. jst doesn't get it so I need some research papers to hit him with i.e. that in Sweden,Germany etc they have a lower threshold for treatment -which the G.P. says isn't true.
I’m in the same boat, got diagnosed and given levo, 12 weeks later got it taken off me saying I don’t need it, 9 weeks on and here I am stuck on sofa all day with zero energy, aching all over, feeling like death, palpitations, shaky, jittery, hair falling out, can’t walk fast, can’t think straight, you name it I feel it but yet they are still saying I don’t need it even though I’ve had two over range tsh bloods and tested positive to antibodies, I wrote a letter to practice manager and asked if they would want to be treated the same way or just left to feel like your slowly dying with absolutely no quality of life, practically begging to start back on levo, drs response is she will email Endo for advice!
Absolutely crazy, they have no idea, I wouldn’t wish this illness on anyone except a dr, just for a couple of months so they understand how I’ll we feel
We're all in the same awful boat - I feel for you I really do, that's awful treatment why doesn't she refer you to an endo? If they stop prescribing me I'll either get my original endo to send a letter which I'll probably have to pay for, or get him to do private prescriptions. You have all the same symptoms I had - it's awful to have your quality of life affected like that. I have bought levo online in the past - it is legal as they do an online consultation to it is prescribed but I'm not advocating this for everyone of course and its super-expensive. Why did they out you on it and then take you off it?
I’m too scared to self medicate, my husband is ringing them in the morning to put a formal complaint in, I got bad palpitations on th brand I was on so she stopped it, I’ve still got palpitations now, I’m so angry at them, I’m worse now than I was before I got diagnosed
Oh dear, I think that for some of us it can take time to get the treatment right so the last thing we need is having to fight to get treatment. Ive had palpitations too but I think I was slightly over- medicated. Again, it seems hard to hit the right dose/brand (for some). I’m glad your husband is ringing - I took mine to my endo appointment. You’re right re self medicating and we shouldn't have to do it! I know its nigh impossible but try not to add worry and stress to your awful situation. Let us know how you get on 🙂
Quick run down of my experience diagnosed with hyperthiyroidism had uptake scan had graves but thiyroid was toxic DUE to GP leaving me with what he called normal levels of TSH,,T3,T4 went in to thiyroid Storm rushed to hospital had to have my thiyroid removed this may.
They have tinkered with the Levo since May my last bloods indicated I was hypo and the lovely people on here noted I was under medicated which I pointed out to my GP but I have a problem when going in meds I have colitis and the Levo seems to be giving me flare ups I told my GP this his suggestion try another type of Levo so I'm now doing that.but I must say my appointment with him was unprofessional he treated me like some naughty school girl who was irritating him by asking questions LIKE.....why do you only look at TSH when T3 is the active hormone he rambled on about it being the best test I then said for who...not me as I don't have a thiyroid and I have graves..he became irritated his voice was stern and he talked to me like I knew nothing about my illness!!pretty sure I know more than him.
I'm sorry to here your on yr sofa and feeling so unwell I'm on meds and feeling the same way taken to my bed again has I have no energy in pain bad headaches running to the loo with the flare ups😔 I won't see a GP till the end of January next year but I'm striking him of my list because he knows nothing of thiyroid illness as you say I'd love a Christmas wish...dear GP have what I've got just for 4 months see how you cope,, can't see me having a merry Christmas haven't had one in years thanks to this illness..
Keep pushing your GP tho it's the only way to get through to them unfortunately and as I said to my GP "it's my health I'm concerned about"
Oh I so identify with the patronising tone. I definitely knew more that the G.P. I saw yesterday as I stumped him with some of my questions. Sorry to hear you're so ill. I'm very lucky in that having has 3 weeks of feeling like I'd been poisoned I now feel well for a week so I really really don't want my G.P to stop my levo. I'm a big fan of the letter to the G.P. partly because I get flustered when it starts to go tits-up at the doctors. Also I can quote research better on paper than in words. Good luck, hope you get some respite
I took my last blood work I got them to print out and wrote on about my TSH being to high and T3 being to low also put down for vit D test and ferttin test..he took the paper of me and said what's all this scribbling on here I told him about my concerns on my blood work he treat me like some school kid who'd screwed up her home work he was not impressed...neither was I so unprofessional of him..😡😡😡😡
I know how you feel .. you need to go back and insist they give you the Levothyroxine and tell them you have no quality of life and perhaps they might listen.
Already done that he knows how ill I am he even said to me "you've been really ill Karen " I felt like saying YES no thanks to you not realising how ill I was in the first place leaving me to develop thyriod Storm...he is not a good GP in my opinion and has a short fuse..I am now trying the other Levo he has pescribed I hope that doesn't give me flare ups of my colitis picking it up Thursday so fingers crossed ❤️
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HELP PLEASE - I'M CONFUSED!
Clarification about T4 to T3
Feel neglected by endo - advice appreciated - do I go down the antidepressant route?
A huge thanks to Thyroid UK for showing me how to deal with my GP!
