As helpfully advised by members of this group, I got an appointment with a GP at my local practice (and what a palaver that was, as they always ask if it's urgent, and when you say 'it's about my thyroid' they reply that it isn't urgent and refuse to allow you to book an appointment, so after a couple of weeks of this I just said, 'yes, it's urgent because I'm going away for 5 months and this needs to be sorted as soon as possible before I leave' and they finally allowed me an appointment).
So I went today and pointed out that I was 63kg and that since the NICE guidelines suggest 1.6mg of Levothyroxine per kilo of weight, I should be on 100mg. I explained that I had increasing low thyroid symptoms again, (feeling cold all the time, pins and needles in my hands, eyelids puffy and drooping over my eyes, fatigue, brain fog, aching joints, gaining weight despite no change in diet etc) and pointed out that I was at the top of the TSH range which is 0.570 - 3.600 and I am 3.357 and I thought that I might benefit from trying 100mg to bring me lower in the range.
She said that she couldn't do that because I was in range. Eventually she said that she could email her surgery's endocrinology support and ask what they thought, but that the answer from them would be 'no' because I am in range.
I said, 'so if they say no, where does that leave me, given that I have all these symptoms that are affecting my life?'
She said, 'You'll have to come back and we'll look into what else is causing the symptoms.'
I said, 'But it's my underactive thyroid causing the symptoms. I had all these symptoms 3 years ago and they went away when I got put on levothyroxine, and they've been returning again over the past year.' (In fact I had enough brain fog and fatigue this time last year that I went to the doctor to ask for my HRT to be increased but they said they couldn't - but now I'm thinking those symptoms may have been thyroid as all the other symptoms have gradually increased to join the brain fog and fatigue).
So then I said, 'so if you are unable to increase my medication, are you willing to refer me to an endocrinologist?' She refused to answer that. And then she said, 'you can put in a complaint to the practice manager or ask to see another GP.' But she'd already told me that the guidelines meant that no GP, nor this endocrinology support would up my dose if I was in range, and I don't have time to wait weeks for another appointment, so of course there's no point in doing either.
On the way home I went to the pharmacist as I was due my next prescription but had put it off till I'd seen the GP today. I told her what had happened and she said, 'Their guidelines say they're not allowed to up the dose if you're within range, but you're the patient and you're having these symptoms and it seems obvious that you could do with a higher dose.' So she seemed to be more aware and quite sympathetic to my case.
GP has already updated my online patient records with some very snippy remarks saying repeatedly that I wasn't happy with the service provided by the practice and that I might complain etc. However at no point did I express any criticism of the practice beyond remarking that this was the first time I'd ever talked to a GP about my hypothyroidism diagnosis, as I'd not been seen in person by any of the doctors for two years in the lead up to my diagnosis, only being offered telephone appointments, and my diagnosis and the subsequent prescribing of Levothyroxine and later dosage changes had all been communicated via texts.
So I feel quite despairing at the moment as I feel as though I've been undermedicated for at least a year and suffering from it, and am caught in a system that is refusing to listen to the patient and now been written up as a 'difficult patient'! Surely, if you have underactive thyroid symptoms and there is a normal range that can go down to as low as 0.570, there should be no problem in upping the dose of the medication to bring a patient down to a lower place on the normal range?
My bloods on 25th Feb '25 (fasting with no biotin for a week beforehand, 24 hrs after last levo dose, but at 11.15 am because they couldn't offer me anything else).
TSH = 3.357 (range 0.570 - 3.600)
FT4 = 11.00 (range 7.9 - 14.00)
FT3 = 4.5 (range 3.1 - 6.8)
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Huffalump
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Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.
Some people need a bit less than guidelines, some a bit more
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
Thank you for your help. I will have to wait now for the reply to come back from their endocrinology support. And then if the answer is still 'no', I will take your advice and compose a carefully worded letter.
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations so that might eventually transfer to NHS
Hi Huffalump❤️Fellow Cumbria here, I can totally sympathise with you on being in the north West and having to deal with any GP or endocrinologists.
I'm in Whitehaven Cumbria and it took my GP years to just diagnose me with a thyroid problem, which turned out to be graves thyrotoxic, I eventually lost my thyroid in 2019 due to the total incompetence of the nhs in my area.
Quite honestly the ones I saw [ endocrinologists] really had little to know knowledge about hyper or hypo thyroidism, I soon found out they have a set of stupid guidelines, that really serves nobody with a thyroid condition.
Weather the guidelines are round medication or diagnosis.
What they fail to see is some people can have hashish or thyroditis which can mean the level of thyroid hormone can fluctuate between over range as in hyper or under range as in hypo, they see a blood test and see over range T4, T3 with a low TSH and automatically think..ha..hyper not thinking it my be hashis flare up , same as low T4, T3 and high TSH.
They are really not taught enough about thyroid conditions and as one member as mentioned most deal in diabetes, I myself haven't gotten anywhere with the nhs in relation to my thyroid condition now hypo because I don't have a thyroid, and the synthetic version pushed upon me by my GP as never worked as it caused my colitis to flare up giving me awful gastric problems, lack of absorption, diarrhea, sickness.
Through the generosity of my son I went private and are now on ndt , although the gastric problems have gone I'm still increasing my dose but my T3 and TSH are now in range it's only my T4 that needs a tweak👍
But by far Cumbria in my opinion is the worst in dealing with thyroid conditions, and even worse in dealing with parathyroid conditions for which I also have [ primary hyperparathyroidism] I also had to go private to get my diagnosis as the nhs endocrinologist in Cumbria had no idea what she was doing😡
I hope you can go private 👍
Just remember to do some research on the endocrinologist, make sure there not from Cumbria 😄
Wow, you've had such a difficult time of it - well done for surviving! I'll bear in mind all you've said, fellow Cumbrian... Were you sent to Carlisle, Barrow or Lancaster?
Both Whitehaven west Cumberland hospital [ the training hospital of the north west]🤦♀️ and Carlisle had my thyroidectomy at carslisle, I've never been offered an appointment at barrow or Lancaster but we're warned they are as bad as Whitehaven and Carlisle 🤷♀️ so no need to do that journey.
I'm under a parathyroid specialist at Liverpool University hospital, Cumbria could learn a lot from Liverpool, it's a well run hospital, I was amazed how they took my thyroid/ parathyroid bloods, because up in Cumbria they faff about nearly always forgetting to use an EDTA tube for parathyroid bloods or just don't take vitamin D along side 😡which inevitably means it has to be done again.
But in Liverpool it was all placed out ..right blood tubes right colours and even a padded arm rest for you arm🤗
I actually look forward to my appointments at Liverpool 👍
This is the exact situation that I found myself in, 14 years ago. 'Go home and rejoice, you are well.' I had all the verve and fizz of a wet dishcloth at the time, so I did exactly that, but the niggle then was, 'How can I feel so ill when this blunderer telling me I'm well?' Cue Dr Google and finding this forum.
I go my own way now. I pay for blood tests, supplements, and NDT, and I have a stash of T3, of which I take a crumb every early morning. I paid for a thyroid ultrasound when I worked at Canary Wharf (Baltic Centre), which confirmed a self-diagnosis of Hashimotos. Mary Shomon, thyroid health advocate, reckons 80% of the Hashi posse never have elevated antibodies at a blood test.
I try and often fail to remind myself that endocrinology is in its infancy, despite what the medics tell us. When I'm dead, maybe this particular brand of science will move on and finally admit that just like other conditions, it is a complaint of enormous variance, and blood tests do not give the whole picture. Until then, I put a finger up, in sadness, in pity for those who cannot afford to go my way, and in foaming anger at such as this, 'you are well, go away' 'it's your age, (so put up with it)' and 'you are in range'. See that last one? I growl like Edith out of Still Game when I recall this buffoon trotting out his nonsense.
Thanks for your answer and for your carefully chosen illustration! It really cheered me up as I've been feeling like crying all evening... Afterwards the whole consultation seemed completely surreal. All I did was walk in, give a few facts about NICE guidelines and ask for a trial extra 25mg. When she said she couldn't, I merely asked politely why not, (I was right at the top of the range, so bringing the TSH down to the middle of the range or even low in the range would still be within the normal range) and she just got all aggressive and started telling me if I was unhappy with my treatment I could complain to the practice manager or ask to see another GP. She was very young, maybe newly qualified. When I got home, I looked at my patient notes and all the entries for years have been one or two words such as 'HRT' or whatever, but she'd written a huge long essay calling it a 'difficult consultation' and I was 'unhappy with my treatment by the practice and she'd said I could complain', repeatedly calling me 'unhappy', 'not pleased', 'unhappy with the practice'. None of which had I said at any point in the meeting and I certainly never complained about the practice. I discerned the sound of the hurried covering of arses!
Contact your Practise Manager and let them know: You have a right under the GDPR to correct inaccurate/false information and Dr High, Mighty and Wrong has overstepped her mark. Do not let this gaslighting continue. On the basis of what you've written, your GP is a clueless jerk, so far as your thyroid condition goes, and they may very well be newly qualified. Having a PhD in how to cover your @rse appears to be her special interest. Does that not fill you with joy and/or relief?
We are often gaslit, my fellow thyroidy, and you must not let this happen. Your concerns, fears and suggested way forward are all spot on. Do not cry in your GP's consulting room. You will be marked hysterical ( doctor-speak for a woman). I would go back to my car and have a shouty weep there, when I was bothered by what my donkey GP had said to me. Now I have a wax model and millions of pins... Crying in frustration is a woman thing, but the patriarchy hasn't caught on to this, to them it's simply the mark of a hysterical, worried-well woman.
Thank you for your support and good advice. I had already considered asking for the remarks to be amended. (When I was in my twenties I was written down by the GP in my notes as an anorexic because I had tried to explain that I was worried because I felt very ill and hadn't been to the toilet for three weeks and had tried some sennokot and it hadn't worked - she told me I was too thin and to go home and eat an apple and ditch the sennokot. My liver was actually going into temporary failure and I was incredibly ill!).
Thankyou for sharing your experience. It shows that sometimes a different GP in the same practice will do something different. Our GP practice has recently been taken over by a chain, and this lass was very new and young so maybe scared to go against the guidelines. I'll try a different GP first, just in case it is successful!
I think you scared the GP! She was probably lacking confidence and feeling defensive. No excuse though.
I also do my own thing and purchase T3. Sometimes get GP to do blood test, then ignore panic responses telling me I'm over medicated, when my FT3 is still within range!
Thank you. I agree about the GP. At first I thought, 'Good, a young one might be more up with the research!' so I didn't approach the consultation in a negative way or with a lack of respect for the new girl. I was shocked when she went on the attack and she didn't even say 'goodbye' at the end then, wrote a tirade in the notes. By the autumn when I am back from being at sea (and that's why it's so scary having such poor support from the surgery - I have to go 5 months out of contact from my health provider), if I've made no progress, I will spend the autumn and winter pursuing other lines of provision.
Surreal is a really good description (in my view) of any attempt at discussion with a medic about hypothyroidism. We are not on the same planet, never mind the same page!
It’s as if hypothyroidism does not exist. It’s so ‘mild’, what’s all the bother about? Totally overreacting, get this patient out of my room asap.
Just listened to an excellent podcast today where Professor Antonio Bianco emphasises, “hypothyroidism is not a mild disease”. OMG I wish medics would get with the programme!
When I was only on 50 I had this too, top of range and "fine". When I questioned it it was oh a dose change could make it drop too much and we can't have that.
Eventually the forum talked me into doing my own bloods with a doctor's comment. That comment really helped convince them an increase wasn't reckless.
If they refuse me this time (after the endocrinology support answers), I won't have time to do anything before I go away for 5 months so will have to put up with it. But when I come back in the autumn, I will get some private tests done as you have advised and start the process all over again with a new GP. Unfortunately I now have this ridiculous entry into my health record that makes me look like a disgruntled troublemaker and I know that is going to affect how I am seen by the next doctor... Out of interest, which of the testing companies do you use?
I suggest you screenshot what they’ve written about you in your patient record so you have the evidence of what they’ve said if you decide it’s unacceptable. In my experience they will alter it to cover their arses if you do complain about the unreasonable things they’ve put, difficult patient etc,etc.
Hi, I feel for you, because I am in the same boat, I am so tired all the time, I have put on 20 kgs but because my bloods are o.k. I am supposed to be o.k. Well I am not but I am too tired to keep asking questions so I will just sit here and continue to get fatter and lazier.
So sorry to hear that. It sounds as though it has got to a really serious level with you. I really hope you can make some progressive somehow. But low thyroid seriously impacts on brain function and memory as well as energy so it gets harder and harder to sort anything. xxx
The same happened to me. I asked my surgery for an increase a couple of times. My TSH was 5 - range was 0.4 to 5.2. I had ticked off all my symptoms on Thyroid UK checklist. I quoted the Nice guidelines - re - weight, and about TSH being under 2, my GP said she'd ask the surgery pharmacist. Then I got a text later saying NO! I was also told by another GP, that it was very rare for anyone with TSH in range to have hypothyroid symptoms! That's when I gave up, because they just don't have a clue. 🤷🏼 I booked a private endo appointment - who gave me an immediate increase to 75 Levo, and wrote to my GP and told them to keep my TSH under 2. I hope you manage to get an increase.
That is so helpful, thanks for sharing your experiences. I am getting such similar messages from people on this forum, I am beginning to see the way forward. I will (politely) pursue the GP steps first, just in case I get a result (which some people clearly have) and when I finally get to the end of the road there, I will start on the private testing and endo route.
When looking at the NICE guidelines (link above in jimh111 post) go onto the next page which has this note about section 1.4.1
Follow-up and monitoring of primary hypothyroidism
Recommendations 1.4.1 to 1.4.6
Why the committee made the recommendations
Evidence showed no clinically important benefits of maintaining TSH levels in the lower rather than higher end of the TSH reference range. Given the need for additional medication to achieve a TSH level in the lower end of the reference range, with the potential for adverse effects and increased cost, the committee concluded that as a starting point TSH levels could be maintained at any point within the reference range.
Nevertheless, the committee acknowledged that some people may still have troublesome symptoms even with TSH levels in the reference range. Therefore, they recommended adjusting the dose of levothyroxine if symptoms persist to achieve optimal wellbeing for individual patients.
The committee also agreed that it was important not to use doses high enough to cause TSH suppression or thyrotoxicosis.
Thanks for the clarification. I know they have to be cautious to avoid harm and doctors going 'off-piste' too often. However, they are at least giving some leeway for individual choice here. Thanks for taking the time to point me in the right direction.
Personally, unless my TSH is under 1 then I get symptoms, never had any problems getting an increase of levo if needed. Your GP is obviously more money fixated than patient.
Interesting, that's what a lot of people answering me are saying - 'I need to be under 1 or 2 to be clear of symptoms.' Hopefully, I will be able to convince them to give it a go at some point. If 1 or 2 is still in range, what is the problem with trying to lower it from the upper point in a normal range to a lower point in the normal range? Thanks for your support.
I had a similar situation when firstly they reduced my dose from 100mcg to 75mcg (even though I wasn't keen) and my levels changed quite a bit. I went back and said I had started feeling rubbish again and the GP didn't want to increase and I explained it was a hormone my body needed so she said she'd write to endocrinologist. I didn't hear anything until I ordered repeat prescription and I was increased to 100mcg and 75mcg alternate days and my levels have balanced out. It was really hard to stand your ground as the GP can make you feel as though you're not being treated with care. I do feel your frustration.
Thank you for your encouragement, your experience is helpful. I'm going to pursue the GP route for a bit longer to see how far I get before going off grid so to speak! So thanks for your support.
Welcome to the party Huffalump. I am going through the same situation. It's like banging your head against a brick wall.Following on from Rapunzel, this link has loads of helpful articles from Mary Shomon: mary-shomon.com/hashimotos-...
Thanks! I will have a good read. I've learned such a lot since joining this forum already. It's hard to believe that they could diagnose me by text, send me a message to go to the pharmacy for my first prescription by text, update my meds by text and never ever have a conversation with me about the condition or how I should manage it. Not even an NHS patient advice leaflet - nothing at all! I know that I am intelligent and come across as capable and able to self-manage, but this is an astounding amount of under-information from them.
You're welcome. I'm new here too and have gained so much from everyone's help and experience. It would be ideal if doctors could actually do their jobs but in the meantime patient experiences and expertise is invaluable.
Do you have any thyroid test from previous years? The only way I managed to get an increase in your circumstance was by saying 'I had a thyroid test done in XYZ and it was abc. that appears to be my 'normal' and I'd like to trial titrating the dose to match that.'
Thanks, I had one done 20 years ago when my older sister was told that she had an autoimmune low thyroid and that her family should be tested. My TSH was higher than it is now - 3.8 (now 3.37) and FT4 was 19.3 (now 11.0) and I was told they were within normal range - but the results from 20 years ago don't show the ranges, so I think it doesn't prove much - apart from the fact my FT4 was probably higher than now. Even then, friends with low thyroid conditions kept telling me that I had low thyroid symptoms but the GP sent me away with a flea in my ear until my sister was diagnosed. The results were 'normal' and I went on a gluten and soy free diet instead (on the advice of my sister who had found that it relieved her own symptoms) and my symptoms mostly cleared up. At the point when I was diagnosed in Feb '22, my TSH was 16.5 and my FT4 was 5.5 so that was very clear! Unfortunately my sister is also autistic and has bipolar disorder and prefers to have as little contact with people as possible, so I haven't ever compared notes with her as she doesn't like talking, however I am going to visit her soon to have a discussion with her. I know that she's in a terrible state and her surgery didn't call her for her annual blood test for nearly 4 years, and I told her she must call them and ask for it - and I was advising her that at a point when I knew nothing much about it myself. She asked me to have power of attorney for her and we set it up a while back, just in case (she is 12 years older than me), but not activated it, and I've offered in the past to go along to appointments with her as an advocate, but she didn't want that. However, I need to get on top of this subject, not just for my own sake, but for my sister. Thanks for your helpful advice!
I'm definitely getting that message on this forum! Thanks for your encouragement. I've gone from bewildered and on my own, to finding out this is pretty much par for the course!
Hello Huffalump, I can imagine how you must be feeling. I am in a similar situation but am not even on Levo yet. I've had high TSH levels and TPO antibodies and have numerous symptoms and yet they have refused to treat me and say I am subclinical.This forum has really helped me in knowledge and to know many GPs are bad and don't have a clue.
So I have a new possible symptom of cotton wool feeling about the toes. Maybe this 9th or 10th possible symptom will finally push them to treat me properly. I'm not hopeful.
I am waiting for blood tests due soon and preparing to be awkward if they don't respond. Private endocrinologist will be my fall back plan.
Could you complain about the doctors notes and while doing that ask for another GP opinion before you go away?
Oh dear, you poor thing! I believe I was subclinical for 20 years until it became serious during the COVID era when noone could see a doctor in person in my area for 2 years so I got serious advanced symptoms with noone noticing. Over the phone they told me it was just normal menopause symptoms! For me, at the subclinical point, removing gluten and soy from my diet helped massively which I now think must have reduced some of the inflammatory triggers and improved absorption of my food. Eventually that wasn't enough though. I hope you soon get the help you need. X
Once again I cannot trust GP's a few are very good these are now in very short supply.
I lost the sight in my right eye through an incompetent GP, I now have a tumour in my ear because a surgeon messed up my Sinus Operation. I had to return four times before my GP sent me to the hospital. I lost the sight in my eye. This was years ago when you could get same day appointments. I now live in France and although I can get same day appointment with my GP he is useless. People here give him one star only because they cannot give him nil.
I treat myself now thanks to this forum. If you could afford it why not try. Good Luck.
Yeah, i am in the same boat. The range in my practice is 5.9 though, so a lot higher!! I am 3.7 whichbis probably to high but apparently this is also 'in range'
I am really sorry to hear of your traumatic and disastrous experiences, and interested to hear that it's not much better in France! Since a friend of mine is now in terminal care due to the GP dismissing the increasingly excruciating pain in her shoulder and not investigating it for a year until a vertebrae in her neck suddenly collapsed and it turned out to be cancer invading her bones, I too think that going my own way might be the best option.! Thanks for sharing.
As you mentioned, your doctor was very young, possibly just starting out in practice. My experience is that these kinds of doctors know close to nothing about thyroid (even less than more experienced doctors, who also generally know not much). In addition they suffer from severe imposter syndrome, which causes them to overreact to anything they perceive as criticism or questioning their competence. This can be even something like mentioning a prior diagnosis by a colleague, which the patient thinks is valuable medical information or asking a question, that is perceived as doubt. They then completely go ballistic on shredding the patient in their report (because "How dare they....?), depicting them as non-compliant, difficult and complaining. It is important to have that changed in your record, because the next doctor will take that depiction of you as the truth and will treat you accordingly as a difficult, noncompliant complainer and you will not be able to escape that cycle of unjustified perception. You will carry this "black mark" from doctor to doctor and most likely none of them will bother to see you as different from the description in your record. I know this does not help you directly with your symptoms, but it might help indirectly by maybe being able to have a better rapport with the next doctor if they don't see you as that terrible patient. I wish you all the best.
Thanks for your support and sensible suggestions! The catch22 of this is that to get the remarks changed I'll need to complain - thus fulfilling their expectations! Anyway, I'll see how to address it in a polite, low key manner and not till after she's got the endo support reply, just in case their answer is to tell her to increase my meds. Need to avoid unnecessary aggro at this delicate stage...
That is very smart. And, as you say, maybe there is a very polite way to have the record changed without making it sound like a complaint. Good gracious! Like we don't already have enough to deal with. We also have to pussyfoot around doctors to make sure that their fragile egos are not hurt.
My endocrinologist has written to my GP surgery with instructions to keep my TSH levels between 0.5 and 2.5. If my TSH goes over 2.5 my symptoms kick off.
"1.4 Follow-up and monitoring of primary hypothyroidism
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. "
it is quite simply 'factually incorrect' to tell you that the NHS guidelines say they 'cannot/ should not increase your dose if your TSH is within range' ,, the guidelines do not say that at all , they very clearly say they CAN consider increasing it to improve symptoms but not to give doses that suppress TSH ... and there is no way to know if an increase will supress your TSH unless they allow you to try it ..... and even if it did, they would simply reduce it again , no harm done. you are not asking them to go against the guidelines ,,, you are asking them to abide by them and consider increasing your dose to a level that improves symptoms but doesn't suppress TSH
i might have given you these before , cant remember , but anyway here they are:
healthunlocked.com/thyroidu.... my-list-of-references-recommending-gps-keep-tsh-lower-in-range ~use these to back up NHS guidelines.
healthunlocked.com/thyroidu... explanation-of-what-*high-tsh-is-telling-us-when-our-ft4-level-is-normal-on-levothyroxine-the-shoe-size-analogy.-*-over-2.5-3-ish ~ simple explanation,.. just in case GP is simple.
75mg. I am 63 kg and according to NICE guidelines patients under 65 yrs should be started on 1.6 mg per kilo of weight which means I should be on 100 mg.
It's so awful 😞 I recommend going private and then when you're stable, ask GP to prescribe what you need. My GP refused to help with my thyroid when I became really ill after taking Levothyroxine, as my levels quickly went in range, but she did say she would prescribe what a private doctor recommended. Some of the private thyroid doctors have thyroid conditions and have become specialists to get themselves better. I wouldn't go with a private doc that does NHS too as they may just follow NHS rules.
Your T3 is low, have you considered a bit of liothyronin?
I haven't considered anything yet because I am so new to all this! But I will bear your advice in mind as I move along the journey. Thank you for taking the time to help me!
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