I popped a post on yesterday about my frustration over the Drs complete lack of knowledge when it comes to anything thyroid! So today I had the call with my Dr and as predicted he told me my TSH of 4.50 was well within range and I don’t need an increase in dose.
I remembered slow dragon who said to quote to the Nice guideline re TSH/optimal levels etc which I did…the Dr paused for a second a little baffled at how I had this knowledge, he said to stay in the phone whilst he checked the Nice guidelines….he sheepishly came back to the phone and said, ‘yes you are right, I will increase your dose’ ….just for a moment there I felt quite powerful 🤣 All joking aside, isn’t it a worry when it’s us telling the doctors the facts? I literally have no faith in the system…how do they not know this information?!! Leaves me wondering how many people out there are suffering needlessly because they trust (or won’t challenge) their doctor!
Anyway, thanks for the help as always especially to you slow dragon! (P.s can you be my Dr from now on?) 👏
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Henson1980
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I have had to quote the NICE clinical guidance on several occasions, just this week in fact. When presented with this the GP glossed over it and said that in the light of my daughters symptoms she would give her a prescription. How generous of her!
Hi could you or someone else please post the link to the nice guidelines on TSH levels when being treated just with levothyroxine . I can’t find this in the liothyrine guidelines referred to below Many thanks
1.3.3 Offer levothyroxine as first-line treatment for adults, children and young people with primary hypothyroidism.
1.3.4 Do not routinely offer liothyronine for primary hypothyroidism, either alone or in combination with levothyroxine, because there is not enough evidence that it offers benefits over levothyroxine monotherapy, and its long-term adverse effects are uncertain.
1.3.5 Do not offer natural thyroid extract for primary hypothyroidism because there is not enough evidence that it offers benefits over levothyroxine, and its long-term adverse effects are uncertain.
Natural thyroid extract does not have a UK marketing authorisation so its safety is uncertain.
1.3.6 Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
1.3.7 Consider starting levothyroxine at a dosage of 25 to 50 micrograms per day with titration for adults aged 65 and over and adults with a history of cardiovascular disease.
Tests for follow-up and monitoring of primary hypothyroidism
1.4.1 Aim to maintain TSH levels within the reference range when treating primary hypothyroidism with levothyroxine. If symptoms persist, consider adjusting the dose of levothyroxine further to achieve optimal wellbeing, but avoid using doses that cause TSH suppression or thyrotoxicosis.
1.4.2 Be aware that the TSH level can take up to 6 months to return to the reference range for people who had a very high TSH level before starting treatment with levothyroxine or a prolonged period of untreated hypothyroidism. Take this into account when adjusting the dose of levothyroxine.
Adults
1.4.3 For adults who are taking levothyroxine for primary hypothyroidism, consider measuring TSH every 3 months until the level has stabilised (2 similar measurements within the reference range 3 months apart), and then once a year.
1.4.4 Consider measuring FT4 as well as TSH for adults who continue to have symptoms of hypothyroidism after starting levothyroxine.
We excpect doctors to know about 'common' diseases.
Before blood tests were introduced patients were diagnosed on their symptoms alone and given a trial of NDT (natural dessicated thyroid ) and if they began to feel much better, they continued with small incrmenets until symptom-free. NDTs saved lives.
I’m going for my private test tomorrow but I’ll be telling the doctor I want to bring my Tsh level down to under 2 when we next speak.What’s the NICE guidelines please?
Well done on your result and I totally agree about doctors,when you start questioning things they really don’t have a clue🙄
NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine
Not sure…this is what Google says…“Evidence-based recommendations developed by independent committees, including professionals and lay members, and consulted on by stakeholders”
Thank you so much🙏If they won’t do it I’m putting in an official complaint,I’ve had enough of being fobbed off and made to feel like it’s all in my head!I was reading a study done by the American Thyroid Association last night that found that hyperthyroid patients who were treated with radio iodine treatment had a poorer quality of life afterwards,compared to patients who had been treated with drugs or surgery.
I’ll be throwing that at them too,I wasn’t even given a choice,I was just told that was the best form of treatment.
Thanks for working it out. I’m sure I’ll find it useful, I’ve been hoping to find something about post RAI being more difficult to treat. I think I’ll wait until the morning to read it fully.
Interesting!! Thank you for the links! I’ll be sure to whip those out when my doctor starts with the whole “your TSH is 15 your absolutely fine” crap! 🥴 why can’t all doctors be like admin on here, they know far more!! X
Well done you. I myself managed to get an actual face to face appointment with my GP last week, which in itself felt like a massive accomplishment!! When quoting the NICE guidelines his response…well that’s what they are just guidelines, along with the usual rubbish about being in range. It’s is so wrong that we have to fight the way we do.
I love his comment of ‘they are just guidelines’ EXACTLY…guidelines that you should follow as a Dr! So many of us are being done a disservice by our GP’s it’s not right! The whole of my mums side of the family suffer from this disorder, including my mum, I know for sure she wouldn’t question or challenge the GP she would just get on with it and suffer! I’m finding the same issue with trying to get HRT, literally jumping through hoops having to challenge everything! Why are we having to battle for our health?! ☹️
Hilarious- so by that logic isn't he following some other guidelines as well then?! So odd. Could be something he just said in the moment to save face.
I was able to get an increase in meds after I quoted 3 different sources supplied by the lovelies in this forum. My doctor still wanted to double check with a specialist, which they did, and luckily my dosage went up shortly after.
Could you change GP?
I feel for you, I get palpitations just talking to GP's about thyroid stuff. Have gotten so used to being not listened to and being seen as inconvenient and hypochondrical. When I finally got listened to I couldn't believe my luck!
I think it is worth remembering that there are over 350 NICE guidelines, some of which change frequently. It must be impossible for a GP to know everything that is in individual guidelines so they rely on lower level information such as local prescribing protocols etc. At least the GP went away and read what you suggested and then had the decency to change his opinion. I say good on him, and good on you for politely guiding him in the right direction!
He did and I give him credit for that, he listened in the end which is the main thing it’s just a shame we have to get to the point of feeling so stressed out just to get the medication we need!
Maybe what we need is a few short fact sheets authorised by TUK about “evidence for optimal TSH” or “vitamin deficiencies in hypothyroidism” which we could give to GPs which reference relevant research/ articles? Short, factual and authoritative.
Congratulations and well done you. I agree how many are struggling out there because of the doctor's poor knowledge. I even had my private consultant tell me a week ago that the tsh is the most important result and if it's too low I'm at risk of af as I'm older. I've lost all confidence in him but he has prescribed T3 which has helped. He didn't like being challenged when I said it will be low on T3 won't it. I honestly give up it's tiring fighting them all the time.
Precisely, I actually had a doctor ask the Head doctor about rt3 test, to which he snorted loudly, never heard of it, doesn't exist. Throughout my 22 years since diagnosis, I've had zero help towards my quality of life,
I was on contraception injection depo provera, which interacts terribly with the hashimoto, which noone seemed to know.
Well done to you, you are the only person with an actual interest in your wellbeing.
I had a brilliant family GP once. You have reminded me , he would always chat, listen, advise and then double check everything in his big reference book. This was when written notes were still around. He was the one who originally diagnosed me with Hashimotos, but sadly I moved and had a dreadful new GP who refused to listen, stopped my medication and sent me down the ME route for years. I had complete faith in the first and lost all faith in the medical profession because of the second. Finally, 15 years on, I feel in a better place, I have a good GP and good Endo team who are on the same page. I have recently been offered T3. I wish I had moved GPS a long time ago! But at least yours is listening to you, that is a good sign. Mine insisted his speciality was endocrinology, pompous old g*t. He wouldn’t consider me having a thyroid problem as my TSH had not yet reached the magic number of 10. Meanwhile my TSH was 8.5, I was practically bald, I had put on two stone, I had scales down my shins, my face was moonshaped, my nails had fallen off my fingers, my thyroid had swollen so much I felt like I couldn’t breathe (his answer was it’s a panic attack), I was hoarse. He completely dismissed bloods that showed antibodies and a rising TSH. Well at least he’s now retired with his big fat pension. I have recently found out owned the surgery and wants more rent, so the village surgery is now facing closure. Horrible, horrible man!!
You'd think cases of thyroid malfunction were rare! The number of posts on this site would suggest that they are not. Not easy, may be, but surely to goodness GPs could have more than a couple of hours of "training" in this area. At the very least, they should be keeping up to date, with an open mind, especially if they have patients with the condition.
At the very least, they should be keeping up to date,
They would (mostly) argue that they ARE up to date... latest N.I.C.E. Thyroid Disease , Assessment and Management guidelines were published in late 2019 .
(unfortunately, despite the best efforts of lots of thyroid patient organisations involved the consultation process ....they are not very good )
Well, they're not up to date if they think a TSH below 1 suggests hypothyroidism. My new GP says he can't understand why she had prescribed Levothyroxine. Good thing I didn't keep up with it.
Hypothyroidism is found in about 2% of the UK population and in more than 5% of those over 60. Women are 5 to 10 times more likely to be affected than men.
And possibly a considerable number more should be treated,…if they could only get diagnosed
Thanks for that, SlowDragon. I must admit, I was wondering about the figures. I suppose if you only work in a surgery twice a week, you might not see too many thyroid patients, even over the years, but I have blood cancer which is really rare and, after my diagnosis, she said loudly that she had seen "loads of patients with MDS".
She was also reported to be unable to understand why my compression fractures were causing so much pain! I understand you can have them without knowing but really, when the pain takes you to A & E and you forgo a flu injection because you can't walk from the car to the surgery, well. Big personality; huge ego. Dangerous woman. All fur coat and .....
I have read a couple of 'last testaments' for the coroner to read from those patients who could no longer continue their lives.
This woman was on the point: of taking her own life until she joined this forum. She also consulted with Dr Gordon Skinner (RIP) - he was another doctor pursued for treating patients as he was taught.
She then took her case to the Scottish Parliament and Lyn Mynott of Thyroiduk assisted Lorraine.
The majority of doctors only prescribe levothyroxine and have no idea of any clinical symptoms that are supposed to being relieved.
It is a great pity that those who are 'at the top of the tree' decided to withdraw the very original thyroid hormone replacement that saved lives from 1892 onwards "no need to take blood tests and treated patients according to their clinical symptoms". and can do so today but it has now been withdrawn. It is called (NDT - Natural Dessicated Thyroid hormones).
For what REASON? who can tell but it certainly proves to me that those at the 'top of the tree' have no idea of how the thyroid gland works or how to enable patients to restore their health.
I am aware that thousands do fine on levothyroxine, but there is a section of society for whom it doesn't do anything at all except make the patient feel far more unwell.
I have been trying to come off level for 5 years now, came down slowly from 125mcg to 25, then to every other day, then Mon wed Fri, then sporadic, then none, usually 2 months on none, I start to get heavy arms, napping by 8pm etc, but this time, 4 months in, feeling great apart from the odd colly wobbles ( seemed to be on coffee days) but then I had this whole strange episode, felt like a stroke, still ongoing now 5 weeks on, have started back on 50mcg a day, just in case, been to private hospital 6 times, done every scan they could think of, nit one dd a thyroid test, even though I told them I have hashimoto. So, have left ventricular dilation and 'some alterations ' they tell me this 2 weeks ago, but don't book the cardiologist until June 1, huh?
So, my question, what has caused the dilation, the hashimoto or the levo?
I heard there is a natural alternative, does anyone use this, how does it do? I'm really interested in getting off level for good, but now worried about further damage to heart
Petgirl2 If you have autoimmune hypothyroidism you can't just come off levo without replacing it with thyroid hormone in some other form .
It is quite common for people to initially feel OK , even briliant,....sometimes for many months after they just stop taking any thyroid hormone ,,, but then as you've just discovered .. real problems can very suddenly occur.
I think it is extremely likely that stopping thyroid hormone totally for over 4 months is what caused your stroke like episode.
If you want to try an alternative form of thyroid hormone to Levothyroxine then you must make the change carefully .
If you just stop taking any for months and wait until you suddenly crash on 'nothing'.... you will probably do yourself long term harm.
Please start a new post with your history so people can advise you better.
your reply here at the bottom of this post will not be noticed by many people, and it seem like you really need some advice and information .
NDT (natural dessicated thyroid hormones) saved lives from 1892 onwards.
Unfortunately the BTA removed this some months ago. It is well seen that whomsoever made this decisions to remove it doesn't seem to have any knowledge about how disabling clinical symptoms can be. I think they forget that it is supposed to restore the patient to symptom-free health with symptoms resolved.
Well done you Henson1980. (You reminded me of my son, who was born in 1980! A happy smile came on my face. Silly Mums)
I understand how you feel, Henson and I agree, it is just not on, but at least you got an apology, mine wouldn't apologise to me under any circumstances.
I am with you, when you think of just how much of our bodies depend on Thyroid health, we really do need our GP's to be on the ball. And most can't even see the ball!!!!
Welcome to my world and many others on here. I’ve just managed to get an increase which I’ve been asking for for over a year. Hope it helps you, I’m not sure yet but it’s only been a week for me.
Well done you! So pleased for you. I know people who suspect they are being mismanaged I’ve even pointed them in the direction of the NHS’s own guidelines, but they are too deferential to say anything. That’s just on my street 😱
Though its good youve got an increase that was patently obviously needed its also a complete nonsenses that GPs are so incredibly ignorant that they arent able to do what they are paid to do: treat us effectively. Its awful that we end up offering congradulations at this level.
Am sick of having to write letters to be put on my medical file to ensure correct treatment. Sadly this does not just spply to hypothyroidism. Patients have to be knowledgeable to ensure their safety of treatment. And I have had to save my own life over aother medical matters more than once. Of late a GP who thought basic blood pressure treatment was an anti coagulant and by her own admission thought I was on three anticoagulants and was going to stop two of my tablets prescribed by a carfiologist. Unbelievable!
The guidelines are not even correct! Im on ndt treatmrnt, prescribed by nhs enfocrinologist and have been for 15years. Its a nonsense to imply it may not be safe. Its been prescribed for nearly 120years. There is nothing out there in research to say its not safe! I ask that Thyroid UK challenge this and ensure that its on record.
So you wont find me quoting the NICE guidelines whilst they make such an erroneous statement!! Shocking, - our country has gone to the dogs. You would've got much better treatment 50years ago then now where hypothyroidiem is concerned. And as for any other tratment, double check EVERYTHING!!
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Battling with the Doc!
Can I have thyroxine now? 
So tired of the battle with useless doctors.
Hypo weight gain mystery is now finally revealed for me (anyway)
