Hi, I'm new here. Frustrated because I'm still having hypothyroid symptoms nearly a year on from diagnosis. My TSH is 5.2 ( 0.4 - 5.4) GP refuses increase in Levothyroxin. Currently on 25/50 mcg, alternate days since May. I've decided to find a private GP (or thyroid specialist) if refused again after next blood test later this month. Just want to feel well again!Not sure how this works, questions I wanted to ask- Would I just see private GP about thyroid issue? Would I be able to use my current GP surgery for any other issues if necessary? I'm not sure I could finance this long term as I'm semi retired now. If I went back to a local GP after a while, ( hopefully after symptoms had improved), would they agree to prescribe new dose - if it had been changed? Would be grateful for any advice/ experience about this. Thanks
Advice re private GP: Hi, I'm new here... - Thyroid UK
Advice re private GP
That really is shocking, diagnosed almost a year ago and you are on 35mcg daily.Its recommended on here that TSH be around 1 or under.Were your T4 and T3 levels checked?
Hi, my T4 was only checked initially when TSH was above the range, T4 was lower than the bottom of the range. T3 was never checked . Thanks
I am not as clued up as many here and you will soon have lots of excellent information but I’d be tempted to say, change your Dr! When on levothyroxine you should be around 1 is the mantra from here. Take care 🥰
Thanks. I just want to make sure whoever I change to is knowledgeable about thyroid. Clearly my GP isn't. I've spoken to 3 different GP's at my surgery. All dismissive regarding increasing my meds.
Sadly very few GPs are clued up on thyroid. You have to educate yourself and then push hard for what you want, using NICE guidelines to force their hands. They are not abiding by the guidelines at the moment. You have been left stuck on a starter dose for far too long. I would seriously consider switching surgeries if you can.
If you go private you will have no idea ahead of the visit if the GP will be better informed. But once you start paying them, they are easier to manipulate I have found.
You need to increase to 50mcg a day now and then after a few weeks, tempted to say 4, increase to 75mcg a day. Hold it for 8 weeks and retest and this time pay for a private test to include TSH, FT4, FT3 and thyroid antibodies to see if your problem is autoimmune.
From then onward you increase by 25mcg every 6-8 weeks after a fresh test each time. The test should be first thing in the morning before 9am. And you should not take your daily dose until after the test so that you have a 24hr gap between last dose and test. Don't eat or drink before the test, except for water.
Always ask for a print of the test results to be sent to you by email or physically handed to you at reception. Ask reception for the copies, never the NHS GP. They don't like it but we are entitled to copies.
Thanks. I could switch surgeries,but I'd be worried same might happen again, it seems to be quite common. Then that would set me back another few weeks, when as you say I really need to increase now to stop myself deteriorating further. I went for blood tests this morning, so just waiting for those results now.
Hi there, I'm presuming your gp has only ever measured your tsh? Have you had antibodies tested to see if it is autoimmune? If your gp can't test for free t4 and free t3 (and most aren't able to if tsh is within 'normal' range) then your first aim should be to get your bloods done privately (plenty of links on here, plus medichecks currently has 20% off I believe). Also get antibodies tested. Have you ever been seen by an endocrine consultant? Once you've got your private bloods done, you might be able to get your gp to refer you.
Hi, I did test for antibodies TPO and TG in October with Medichecks, both very low. Also T4 and t3, they were near bottom of range. Never seen an endocrinologist, maybe I'll ask, but there'd be a long wait on NHS. Thanks
you have the right to see a consultant, tell them you want a referral, if you are in a hurry then you can see one privately, and the GP has to follow what they recommend. cx
Thank you
I am on a waiting list to see an endocrinologist, my appointment is around a year down the line.
That's frustrating! So sorry.
On NHS if your TSH is within range referral to endocrinologist will usually be refused
Policy to try to reduce waiting times from 18 months to a year
It's too soon for an endo. You are dealing with crap GPs not a difficult health issue. The endo would not take a look at you at this stage.
50mcg levo is generally the starting dose. You should have levo increased to roughly 1.6mcg per kg of body weight according to guidelines. But this should be done very gradually (big changes too fast can 'shock' the system). So aim for 25mcg increase then retest after 6-8 weeks, then increase again (once you get a prescription increase). Personally, I increased by 12.5mcg increments for a few weeks before increasing again. Most hypos generally start to feel better with tsh closer to 1.
Thanks. Yes I was very sensitive to Levothyroxin and had bad reactions for the first 2 months. Not looking forward to increasing cos of bad reactions but I know I need to.
Answering your question about going private.. I'm seeing a private consultant about my thyroid im February. My plan is to only use the private consultant for my thyroid, and nhs gp for everything else. I have yet to decide whether I'll tell my gp about my private consultation 
That seems like a good idea. I just want to make sure whoever I see isn't gonna be like my GP, just relying on TSH. People say the NHS endos are mostly diabetes specialists and aren't any help with thyroid. Don't know if that's true, but don't want to waste my money. I'll have a look for one.
Thyroid UK have a list of private Endos who are supposedly good for Thyroid. Do research them however or ask for recommendations on the forum. You dont want to waste money and come away disappointed.
Slow Dragon, one of our admins might be able to provide you with the NICE guidelines that state that whilst on Levothyroxine your TSH should be below 2 and preferably nearer to 1.
Your TSH is much too high and you are undertreated. If she kindly replies you could print off the guidelines and show them to your GP. If you do get an increase you dont have to jump in with 25mcg, some members are very sensitive and have increased by 12.5mcg or even 6.25mcg.
You dont even have to increase every day, you could try an alternate day increase or even just a couple of days a week to start. Just invest in a good pill cutter.
As we always say its not a race and you take it at a pace that suits you.
Thanks, I'll take a look at Thyroid UK s list. Re the NICE guidelines, I printed them out and showed my GP. She listened, and then said she'd ask the pharmacist ( at my surgery pharmacist manages medications for thyroid) . Then messaged me later and said NO. So annoyed and upset because I actually feel like my health has deteriorated this year. Then I asked another GP in November she also said no, but said she'd check levels in 6 weeks. Going for tests today to see what TSH is now. I think I'll have to get help from someone else. Sick of battling with them.
I find it odd that a pharmacist can overrule a GP. Maybe the pharmacist needs a copy of the guidelines 😃
Yeah, it's ridiculous 😂 . I think it's to do with taking work off GP s. So once diagnosed, to them it's just simply managing medication. 🤷
In fairness most pharmacists know a lot more about medication, side effects and potential drug interactions than GP's. I've had some very enlightening conversations with the surgery pharmacist.
That said though prescribing still should fall to GP's and they should be making the decision to change medication or dosage. Pharmacists have a different skill set to GP's.
Do you test using the recommended steps ?
Yes, just been for blood tests early this morning. Thanks
I see an NHS endo and have done for 20 years. The one I have now is very good, as was the one before (who retired). I have my TSH/FT4/FT3 checked every six months and am prescribed T3 as well as Levo. I know that I'm probably lucky but I'm just saying that good NHS Endos are out there. Don't believe everything you hear - we all are just going by our own experience.
Wow, that is interesting to know. Thanks
You’re GP isn’t following the NICE guidance.
I couldn’t get diagnosed with the NHS so I went to a private Dr (from Thyroid UK list). I feel understood and listened to, at last. Still titrating my dose though so not feeling better yet. Message me if you want the details.
Thanks. I already have the UK thyroid list. I had just been waiting, hoping GP would help me. Deluded hahaha! To feel " understood and listened to" that would be bliss.
We are all deluded by the time we finally find the Forum. So no worries there. I worried about my GP’s reaction to going private too. However I found them utterly complacent (basically they don’t care) and was greeted with “If your private endocrinologist prescribes T3, the practice won’t pay for it.” At the time I thought fine, if I find it helps I will pay myself. I was very green. My GP practice is not following NICE Guidelines - and there are a great number who do not. Even more disturbing is NHS endocrinologists are about as useful as your GP, in my case worse. Basically they are so terribly ignorant, lacking empathy and arrogant.
However as to your other question, can you still see your Gp about other issues, the answer is yes. I was worried about being cut adrift by seeing an endo privately. However the more I read about hypothyroidism and it’s widespread effects on the body, the more important it becomes to get my thyroid medication ‘spot on’ because, for many of us, our thyroid medication not being precise is where many of out other symptoms/conditions spring from. If you get something you are convinced is not related to your thyroid, of course you must see your GP or if you have a Walk In centre, they are often just as good. However I have found by joining the Forum, there is a lot of advice and sharing of useful experience that can be found. Even if you could see a GP, which is nigh on impossible at the moment in the time frame that would be useful.
Take your time. Do your reading. Understand your advice from the Forum as best you can. Start getting your tests done. If you decide to see someone privately, investigate them as best you can. In my case, just finding someone who would prescribe T3 (which it clearly looks like I need) was a disaster. You need someone who is interested in the ‘work’. Get recommendations from people on the forum before making any appointments.
Thanks. It was interesting what you said about the widespread effects of hypothyroidism. I'm pretty sure I have minor symptoms that my GP would not think are connected, but I've done some research myself I've recently developed arthropy of some finger joints, and that can be connected. I'll start looking at the UK thyroid list. So have you not been able to get T3 ?
I would say you are more than likely correct. You will soon become familiar with the term ‘Co-morbidities’. These are ‘illnesses’ that medics insist are separate from hypothyroidism (and yet related directly to hypothyroidism) but in my view are actually hypothyroidism, which continues to develop in under medicated individuals. I hope you get my drift here.
I was able to easily get T3 at great cost through a private endocrinologist. She dropped me as fast as she could when I had problems. The T3 irritated old symptoms to a degree I could not handle, which I am having to learn more about before I try again. However many people on the Forum do not experience undue problems, so don’t let that put you off. I was in too much of a hurry and the carry on has set me back quite a bit. That’s why I say get your reading done etc. Try to understand as much as possible, monitor yourself so you can tell when changes take place etc. And off course ask questions on the Forum.
Thanks
Are you able to expand on what you mean by ‘irritated old symptoms’ when introducing T3? 🙏
This is the moment I wish I had filled in my bio. I expected to get well quickly and thought I’d fill it in when my story was complete! It’s been longer than I hoped.
Old symptoms were extreme pounding palpitations and chest pain bringing on anxiety - 99% of this happened in the middle of the night. The symptoms were so old (50 years old) but had morphed into something else by about twenty years ago (coronary spasm diagnosis) I made no connection at first.
At the moment reading Paul Robinsons books and Dr. Sarah Myhill and really looking at low cortisol. Honestly I really hoped to avoid this (I just wanted to get better asap), I did not have time for this ‘additional’ information and I was not comprehending a good number of people’s comments re: low cortisol on the forum. Everyone was speaking with knowledge that my brain would not take in.
I still don’t know enough to explain further because I was only diagnosed less than three years ago (I think, sorry timelines are a particular problem for me) but my symptoms of hypothyroidism/Hashimotos have been going on for over fifty years I reckon. Now that I recognise the T3 stuff from before.
I just want to add, many people do not seem to get symptoms from T3 and seem to benefit quickly. Do not let my experience stand in your way but do read as much good quality info you can find, as well as keeping up with the Forum, of course.
Thank you for the fulsome response. I completely get what you’re saying about expecting to get better having introduced yet another element to the mix. It’s funny, I was going to ask whether you’d explored the cortisol angle. I take T3 but have yet to feel any benefit but am awaiting blood test results so hopefully they’ll throw some light. Cortisol is something I need to address, too, although I was hopeful that T3 would sort that 🫣
Did you ever try different T3 brands?
Yup tried different brands. Result was similar to starting levo. Felt like something happened very quickly each time. Felt better until I didn’t. Four times I think. However each time I got a bit further. Last time I was able to take it for a month before I could not. No idea what that is about. Maybe I am using up my cortisol that I have ‘stashed’ and when it’s gone the T3 (which apparently works in tandem with cortisol) can no longer do it’s ‘thing’ and I have then put myself in a position where I have actually made myself more hypothyroid! Taking my time working through things at present
Maybe you need more to ‘see’ something but don’t take advice from me as I have made a complete hash of it. Hopefully your tests will give a better idea of where you are!
How frustrating for you, you have my sympathies.
Thanks for the good will. Have you had your cortisol measured? Saliva is best, as you no doubt know….
I have had it measured. It was far from spectacular but rightly or wrongly, probably in wishful thinking, I thought I might manage. Already Paul Robinson has given me an idea what might still need taking into account. Ironically his explanation (and Dr. Myhill) covers ‘gears of a car’. I drive but had no idea what the gears do, other than they are essential. My husband has explained to me what they do and Paul Robinsons explanation fits me very well indeed. A very long time undiagnosed etc etc. So onwards and upwards.
Good luck!
Hi! Welcome to the forum! You have come to the right place to get answers to your questions, clear up confusion, and to be able to take next steps with confidence that you are on the right path.
Your experience is very common, and everyone's advice above is spot on!
A few things I'll add.
" GP refuses increase in Levothyroxin"
It is entirely too common for GPs to treat on TSH levels, when it is 100% wrong. Here are the TSH references that support maintaining a low TSH. This is a pinned post that will arm you with the info you need to show you should NOT be treated based on your TSH:
healthunlocked.com/thyroidu....
Remember - the goal is not to TREAT BASED ON TSH. Neither you nor your doctor should titrate any dose based on that. You should not "aim" for a TSH of ~1-2. The goal is to treat your underlying FT4/FT3, which in turn will suppress your TSH. And when we do that, most people see TSH around 1 when they are feeling well.
Would I just see private GP about thyroid issue? Would I be able to use my current GP surgery for any other issues if necessary? I'm not sure I could finance this long term as I'm semi retired now. If I went back to a local GP after a while, ( hopefully after symptoms had improved), would they agree to prescribe new dose - if it had been changed? Would be grateful for any advice/ experience about this.
As for these practical questions - they are commonly asked on this board. The bad news is that your experience is more common that we'd hope. The good news is that there are ways to tackle it - but it certainly is very individual and depends on your particular GP/surgery. Have a read through all these replies, then let us know what you are thinking. If cost is an issue, you could take the TSH materials and simply try to get an increase in Levo based on that. You could titrate to 50 daily and that alone would get you BACK to a traditional starter dose. Which will buy you 8 weeks when you can test private for your next blood test, then figure it out from there. You will likely need an increase from there, but one step at a time.
"a year on from diagnosis...Currently on 25/50 mcg, alternate days since May."
First - a shocking number of doctors do what yours has done. Start you on the starter dose (50 mcg/day) and left you there. It happened to me. I felt terrible. It took me 9 months to find this board and get myself on track. I don't understand why something that is so completely basic is such a mystery for doctors! But it is.
The important thing to know is that Levo is a REPLACEMENT not a TOP UP. When you start taking it, you need to work up to a full replacement, it's not just adding on top of what you have.
Hi, I did test for antibodies TPO and TG in October with Medichecks, both very low. Also T4 and t3, they were near bottom of range.
Others more knowledgeable than I will note that there is definitely a certain percent of those with autoimmune thyroid issues that do not test for positive antibodies. It's important to know what's causing your thyroid issues. But I don't fully understand it when ABs are normal, so I would wait for an admin to reply to demystify the importance of those AB tests.
Low & Slow
So the very first thing would be to adjust your dose up. The best practice here is low (ie, 12.5 - 25 mcgs at a time (or even less sometimes!), and to only change ONE thing at a time, and to stay on that new dose for 6-8 weeks. Hopefully the TSH link above will help get you there.
"Very sensitive to Levothyroxin and had bad reactions for the first 2 months."
It's possible that you are not "very sensitive to Levo". Because when we titrate, many of us feel pretty rubbish in those weeks after. It takes 6-8 weeks for our blood chemistry to settle down after we increase. Now, there are certainly people who are indeed sensitive to Levo. You have people on all sorts of different Levo regiments and other things when that is the case. So we can watch out for that. But keep in mind that the 6-8 weeks adjusting to a new dose are not a straight line - there are ups and downs and new or worse symptoms that pop up!
Blood tests Among this board, there is a vast amount of people who test private. It is common for the NIH to refuse tests, for the labs to not do tests that are ordered, and generally to not get what we need for our Thyroid health.
TSH, Free T3, Free T4 are the must haves every time.
Antibody tests - TPOab and TGab. Usually we only need these once to get confirmation we are autoimmune. Since you didn't show that, let's get an admin to weigh in on how and when you would repeat these.
Vitamins D3, B12, Folate and Ferritin also should be tested. Suboptimal thyroid interferes with the absorption of those. And when they are not OPTIMAL (not just in-range) then our Thyroid doesn't work as well either. Many people do indeed get these done privately.
Testing protocol
Check this post: healthunlocked.com/thyroidu...
Know that TSH is highest around 9 am, and so it's recommended that tests are done following the info in the post above, consistently, all at the same time, and the same conditions every time.
"Just want to feel well again!"
You will! Your meds are not aligned to your symptoms or optimal test results. Period. Now, this is not a fast process. But the best thing is the advice you will get on this board will put you on the right path. It might be a long path that required patience. But it is the right path.
Thanks FallingInReverse that's so helpful. Thanks for all those links. Regarding patience - I'm rapidly running out of that, with my GP. I really don't feel up to battling with them. So hence the enquiry about going private. I already showed my GP the NICE guidelines. I wonder really if some GPs might feel annoyed that you're trying to tell to their job?
You wouldn’t have to tell them if they knew 🙄. Too busy treating numbers on lab work without understanding what they are doing.
The other thing you could do, although shouldn't have to, is self source your own Levothyroxine. It is possible to buy your own and this would be cheaper than going private.
If you ask for reliable sources someone could personally message you as this is not information we are permitted to discuss openly on the forum.
I'm loathe to suggest this though as it lets your surgery off the hook and it is their responsibilty to ensure correct treatment.
I just upped my dose myself and told the Dr after the next blood tests! I then kept increasing it to 175. My bloods were always in their ‘magic’ range, what could they do. It was my health and only I knew how I felt.
I've done the same but was lucky enough to have reserve Levo. I spent 6 months on NDT only but was still getting my Levo prescriptions and I'm very glad I did.
But if you only get Levo prescribed every 28 days, as many of us do, it doesnt give you any wriggle room. I'm now on Levo and T3 combo.
In Spain you can buy it over the counter for a couple of Euro and it’s a bigger pack.
Doctors here seem to have the idea that Levothyroxine is akin to crack cocaine 😠 and are terrified to let us have more than the most meagre amount.
It’s Speed😂😂. Cannot be giving it to females, they might be well enough to take over the world !!🤭
I sometimes wonder if they think we're misusing it for vanity reasons, ie to lose or control weight.
Don't blame you! Did they increase your Levothyroxin prescription or did you continue to buy it yourself?
I did not get full recovery from my symptoms with Levo . I saw the late and wonderful Dr S and went on NDT Armour. Then various other NDT as the formulations changed or were no longer available. Now on Thyroid S having tried T3/4 earlier in the year.
Yes, at the time they did increase my prescriptions.
Thanks, I had wondered about this. I might consider it. I'll just wait for latest blood test results. I know if I m still within their range they won't offer an increase.
I sympathise. I was diagnosed with Hypo in 2020, although I suspect looking at historical blood tests I've had done that I've been struggling with Hypo for a long time. But although my TSH was high, it was " in range" so they never tested the all important FT4 or FT3.
I was unlucky enough to be flagged up as Hypo during covid. I had my first abnormal blood test in February 2020 and then following NHS protocols was retested 3 months later. By then TSH had risen still further and my FT4 was even lower. Mine was below range both times even though my TSH wasnt especially high.
I started on Levo in June and should have had bloods taken 6-8 weeks later, but it was several months, due to covid. When I did get retested my TSH was in the range and as far as my GP was concerned that was good enough. I didn't feel great but at the time I didn't know any better.
So I was left on 50mcgs until autumn 2021 when I got called in for an annual blood test, TSH was around 6 or something so Levo got increased to 75mcg, then when they did another blood test they quickly raised it about a month later to 100mcg.
I 'm now prescribed 200mcg, but as I've self sourced my own T3 I take 175mcg Levo and 10mcg T3. I'm due to run my own test in a couple of weeks to see where I am and will undoubtedly have to tweak my dose.
I never realised what a minefield thyroid health was until I joined the forum.
Sorry I missed this message. That must have been difficult not being able to get any help through COVID. I also was probably hypo for 2 -3 years, looking back, symptoms just crept up on me.Thyroid health does indeed seem to be very complex !
If you have the NICE guidelines and the GP is refusing to follow them it might be worth writing a letter to the practice manager asking for the reason why the guidelines are not being followed as this has not been explained to you.
I got better treatment by saying I was a member of Thyroid uk
You can also say that you are happy to have them put in your notes that you accept responsibility for trialling an increased dose.
Hello Cat_bluenote and welcome to the forum :
Can you please share with forum members the October blood test results from Medichecks -
If we talk you through the relationship between the Free T3 and Free T4 it might help you better understand what is going on.
There are many brands of T4 - and all pills have some fillers in them which can upset some people - once on a brand that suits you it is possible to state the brand you must be prescribed.
Thyroid UK - the charity who supports this patient to patient forum hold a list of specialist endos and thyroid specialist - both NHS and private -
so email admin@thyroiduk.org for the list and see if there is anyone there who you might like to see - many still do video consults so distance need not be an issue and we can give feedback on a certain specialist if you ask the forum to reply by Private Message - and the chat button then lights up - looks like a paper plane - as we can't openly talk about any person.
But first I would consider running a further full advanced thyroid panel to include the core strength vitamins and minerals of ferritin, folate, B12 and vitamin D if you didn't run these in October as if these are not maintained at optimal levels no thyroid hormone replacement works well anyway.
Make sure you arrange an early morning blood draw and fast over night and do not take your T4 for that day until after the blood draw - so having left around a 24 hour window from your last dose so we measure what your body is holding and not what you have just ingested.
Are you registered at a group surgery - as another doctor as your surgery may know that once on thyroid hormone replacement patients generally feel better when the TSH is down towards the bottom of the range and simply increase your dose of T4 - which maybe all that needs to happen at this point in time.
Thanks so much for all the helpful advice. My T3 in October was 4.1 (3.1-6.8), T4 was 16.5 (12-22). Vitamin D was 75 in November. Last August GP checked B12 - 450, Folate 19. Ferritin was low at 38 but GP didn't flag this so I'm supplementing with iron, and B vits.
Will reply further later as actually have my blood tests today this am. Fasting and no meds done.
OK then -
from extensive reading for myself I read in several places and now understand and experienced for myself ferritin needs to be over 70 for any thyroid hormone replacement to work well -
I now maintain my ferritin at around 100 - folate around 20 -active B12 75++ ( serum B12 500++ ) and vitamin D at around 100:
Just being in a NHS range is not optimal and some ranges are too wide to even be sensible and we need optimal bloods and needing more support rather than less to support our ourselves when dealing with ill health.
Results get flagged when out of the ranges to draw the doctor's eye to the issue and out of range readings allows a NHS prescription to be considered.
It's a bit like painting with numbers - with the computer doing the work but I'm not sure the computer knows the patient's history as I'm not sure there is any joined up thinking going on.
Thanks. That's useful about the vitamins. So would you recommend checking vitamin levels on an annual basis or more often?
I now do them yearly as I'm now on maintenance doses -
but initially, depending on the results you may need to track 3/6 monthly - but forum members can advise on this and the best supplements etc once we see where your levels are.
Thanks
T4 45% through range and T3 only 27%.
Thanks. Do you know if NICE guidelines mention T3 /T4 levels at all?
I don’t think the guidelines mention levels of FT3/4 - but I could be wrong. If they were mentioned ‘in range’ would probably be the only requirement but I think ‘in range’ TSH is the only thing they’re concerned about.
We generally feel best when on T4 monotherapy when our T4 is up in the top quadrant of it's range with the T3 tracking slightly behind at around 60/70 % through it's range - or put another way a around a 1/4 ratio T3/T4 once the T4 is well established in the top quadrant.
So, for example a T4 at 20 - in a range of 12.00 22.00 - is 80% through the range and with good conversion we would likely see a T3 at around a 1/4 ratio - so around 5 - which is just 51% through the T3 range of 3.10-6.80:
Personally on T4 monotherapy I needed my T3 up at around 70% + through the range - and used to have a T4 over range to have a chance to being well on T4 monotherapy.
We are all different - I'm with Graves post RAI thyroid ablation :
So- your T3 and T4 are at around a 1/4 ratio T3/T4 but just not high enough in the ranges to relieve your symptoms -
hopefully this means your conversion is good and with a T4 up in the top quadrant you should see much higher T3 as it is too low a T3 for you that gives you the insidious symptoms of hypothyroidism just as too high a level of T3 for you may give your symptoms of over medication.
Thyroid uk - thyroiduk.org - have a page on their website detailing symptoms of both hypothyroidism and hyperthyroidism - and yes - you've guessed it - it's not that easy, especially if with an Auto Immune thyroid disease - as some symptoms sit in both camps !!
Thanks, that's very useful.
When I eventually plucked up courage to write something on this forum we had around 15 thousand forum members - now some 7 years later we have over 135 thousand and growing every day -
So - as for the guidelines - if they were fit for purpose I doubt our numbers would be growing at the rate they are and we wouldn't all be here helping one another and giving back where we feel we can help another person lost in the gooblegook and blaming themselves for not being well.
Hi there! I've tried a couple private endos and am now seeing a pharmacist who is just as helpful, knowledgeable and understanding at a fraction of the cost. Please message me if you'd like her name.
Quick reply on your practical questions: yes, I saw a private GP just for thyroid issues and see my regular NHS GP for everything else. Now getting my NDT prescribed by a private pharmacy. Thyroid UK have a list of private GPs as well as endos although the EDIT for typo: endos are more discussed on here, with mixed results. I couldn't get diagnosed by NHS but was prescribed straight away by private GP. Happy to discuss further and answer any EDIT ques:but as others said, to my EDIT admittedly inexperienced eye, you might not need to as it looks like you've plenty of room for an increase by NHS standards. Sorry, reread that and there were a lot of tips, hope it makes sense now!!
Thanks for your reply. All this information from everyone is encouraging me, and making me realise I have to sort this out for myself.
Sadly, you really do. We are on our own with this illness. But we have each other, which is amazing.
You will feel SO MUCH BETTER when properly medicated! I'm glad you're feeling encouraged. It makes me furious that this is so poorly treated, but the good thing is you have lots of options.
Re reading- all the advice - quite a lot to digest. Only just saw your reply. It makes me angry too. Hopefully I'll be feeling better sooner rather than later.
And then there's also all the people who are on Levo and have no idea their symptoms are/or could be related to their thyroid. They have an annual check at GP and are told they're 'in range' but never think to query it, - like my next door neighbour.
Hi Cat_bluenote
I am so sorry you have an ignorant GP. They seem to know only enough to be dangerous and I expect they have’ trained up’ the pharmacist to take on the role they now have.
I will tag SlowDragon in to give you the information you need to start working through. Just by there beloved TSH alone it is obvious you need an increase . However it is wholly inadequate to rely on this for dose management.
There are two pinned posts - I have identified the latitude they have in the guidelines.
healthunlocked.com/thyroidu...
this second one is a pinned post by tattybogle on importance of keeping TSH low when on medication.
healthunlocked.com/thyroidu...
In the meantime
You can read my bio (click on my face) which is a classic example of how they are getting it wrong. You will relate and you should get angry you are being mismanaged.
Use that anger to drive your self advocacy, don’t throw a ‘paddy ‘ they love that as an opportunity to label as neurotic. We have to be cool and calculated.
I have also written self advocacy posts the can all be accessed from the bio page.
Thanks, those links were interesting. I've been suffering from brain fog and depression. So the thought of trying to be "cool and calculated " (while my brain isn't working properly 🙄)and argue with an arrogant GP doesn't appeal, at the moment . I am angry that I'm being mismanaged. But I think I need to find a sympathetic private GP/endo who can help me get to the optimal level of medication.
I had hubby come along on first GP appointment after we had realised I was being badly mismanaged. Having a supporter is incredibly helpful. However, caveat to that is they have to be strong (silent is fine) and not susceptible to being bamboozled and recruited by GP to their narrative. That sort is no good at all, better off on your own.
I had a nightmare with my GP surgery. My story is pretty much the same as yours. When it got to the point where they couldn’t properly diagnose me , were being obstructive, and I was schooling them on my condition - I went private. My GP wouldn’t increase my Levothyroxine dose (I was on 25mcg), but my Consultant (see an Endocrinologist, they should know what they are doing - fortunately mine does) trebled it straight away. The GP’s I dealt with were narcissistic , incompetent and borderline negligent. It’s sad when you have to research your own condition and advocate for yourself because someone who is paid £90k+ won’t do their job. I have Hashimoto’s Thyroiditis.
Love your fire Tufty!
You can Private message to share info on endo just don’t comment publicly 😉👍.
Thank you 😊(not sure about the second comment as I didn't mention the name of my Endocrinologist 😉)
No, but if you want to let anyone know you can use chat to tell them 😉👍
It is very depressing 😣 that hypothyroidism isn't being managed properly on NHS! I hope you're ok now .
I know. It's the lack of knowledge and lack of desire to research the condition properly to give their patients the best care that is the most shocking. I do all I can to help my clients and am constantly investing in my continued professional development to grow my knowledge and keep up to date. The arrogance of GP's is astounding. My GP told me I couldn't have Hashimoto's because its "rare and comes on suddenly". I know - seriously!! I put him straight and insisted on an antibody test and it revealed the autoimmune component. He has been obstructive ever since. Thankfully I have an amazing Endocrinologist who is medicating me correctly. She's expensive but she is worth every penny. I feel the best I have in 6 years.
Oh it's not the only thing. I have permanent atrial fibrillation too. That's not being managed at all by the NHS and I will soon have to stump up for a private consultation with a cardiologist with specialist AF experience for a second opinion and medication review.
And I have horrible peripheral neuropathy and that's been over-looked by the surgery so I'm busy educating myself about that and self-injecting B12 liquid. Basically my surgery is good and the doctors are available and caring. But they only really deal with the basics. Blood pressure, asthma, infection etc. For the rest I learn all I can and do it myself now as anything else is a waste of time.
Your GP is terrible, but sadly this seems far from rare
Hopefully they are also testing vitamin D, folate, ferritin and B12
If not you will need test privately
Get dose increased to 50mcg initially
Which brand of levothyroxine are you taking
Only change one thing at a time
Dose or brand
TSH should be under 2 as an absolute maximum when on levothyroxine
gponline.com/endocrinology-...
Graph showing median TSH in healthy population is 1-1.5
web.archive.org/web/2004060...
Comprehensive list of references for needing LOW TSH on levothyroxine
healthunlocked.com/thyroidu....
onlinelibrary.wiley.com/doi...
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).
Roughly where in U.K. are you re seeing endocrinologist privately initially?
Here’s link for how to request Thyroid U.K.list of private Doctors but also a link to download list of recommended thyroid specialist endocrinologists
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations
thyroiduk.org/contact-us/ge...
Thanks for those links, really helpful. GP only tested my vitamins once. I'll get them checked myself if I can't get them to recheck. Ferritin was 38 in August, I've increased my iron supplementation since I found it was important for conversion. I've been vegetarian for 30 years, so wasn't surprised iron was low. I do supplement with B vits but not every day. I'm in the North west, about 30 mins from Liverpool.
As vegetarian it’s especially important to maintain all four vitamins at optimal levels
Supplementing iron you need full iron panel test 3-4 times a year
Ferritin at least over 70
Serum B12 over 500
Active B12 over 70
Folate at top of range
Vitamin D over 80nmol
As a vegetarian likely to need daily B12 in addition to daily vitamin B complex
Thanks for the advice. I'll get them checked soon and post my results.
Hi,
We couldn’t see an endocrinologist on the NHS even though my husband was rushed into the Acute Medical Unit at the hospital because he was so in need of levothyroxine by that point. The waiting lists here are so long they don’t see you at all but just write back and forth between GPs. It doesn’t work.
We saw a private endocrinologist, with Medichecks blood results and he wrote to the GP about what to keep the TSH at. In this area, they have to be told by a consultant. My husband’s TSH has to be below 1. We only need to see his consultant every 6 months, and his is a very complex case. We used the list ThyroidUK supply to find him.
Once the GP has instructions from an endocrinologist, they will need to follow them which should get round your problem 😊
I really wouldn’t worry about any attitude from the GP over going privately to a consultant. It’s the same people who work in the NHS hospitals anyway and the waiting lists are so long all over the country that the GPs are very used to it now. Mine are just relieved we get seen! We currently have to wait a month for a GP phone appointment unless it’s an emergency- and no chance of face to face. The whole system is broken and they know it. Just do what’s right for you
Thanks for your reply
That showed my thyroid was tiny, less than 1 cm each lobe) I passed on the report to my GP, they said it wasn't relevant.
Also I privately tested for TPO and TG antibodies, both very low.
From your very helpful profile
This suggests Ord’s thyroiditis - which is autoimmune
20% of autoimmune thyroid patients never have high thyroid antibodies
Ferritin at 38 was much too low
How long ago was that test
Please add other vitamin results
Hi
Sorry to hear you are having such a rough time.
I had a similar but slightly different experience (related to T3 rather than dosing levels). I took the approach of wanting to have a second opinion from a specialist (ie an endocrinologist) rather than a GP.
First time I did it was before I knew about this forum. It was a disaster as the consultant was rude and dismissive (recommended by GP interestingly).
I left it a few years then asked again. Initially went via the GP and NHS. Again another rude and dismissive consultant (who told me just to buy stuff over the internet as I might find a forum). Initially I was fuming, but it led me to this site. I asked for recommendations and someone directed me to the consultant I now see who is lovely.
I have to see him regularly as he prescribes me NDT which is not available via GP. It isn’t cheap but worth every penny for quality of life.
I am wondering though in your case if you are asking for an opinion regarding levels whether it may be a few visits and blood tests over a period of time. Effectively you are asking for his or her opinion which once a dosing regime is agreed (if they did feel it needs changing) they can than write to the GP with the authority as a consultant advising what your dose should be (which hopefully they will then take on board).
In terms of cost if you were to stay on levothyroxine it would be the appointments (at least one initial and one for every review potentially if dose changes and possibly one in 6-12 months after final dose decided to see how you were getting on.)
A lot of people use the various blood test options you can do yourself alongside. I use basic one that works out about £30 a time and I take my results with me when I see the consultant. Cheaper than private tests through the hospital.
You can obviously choose to stop seeing the consultant at any time and this is only a guess on my part of a minimum idea of cost based on you needing a dose change, it taking a few steps to change it and the consultant wanting to review you and you then deciding not to see them again once settled on dose to keep costs down (and staying on levothyroxine which a GP will definitely prescribe).
Some people on this forum have been lucky to have GPs who will prescribe T3 medication but it is unusual, this may/may not apply to you but if a consultant suggests changing worth being aware of potential cost implications
My endocrinologist wrote to my GP with advice he follows . I get NDT from endo, some levothyroxine from GP and all other GP services/prescriptions are unaffected as a result of me seeing my endo
Apologies a long post but hopefully this will help with your decision making, good luck.
Thanks, so much that's really helpful. I can see it might be best to find an endo, and then GP will have to follow their guidance.
If you're going to pay I would recommend seeing an endocrinologist not a GP. You will be able to continue with your GP for all else.
Thanks
I know exactly how you feel. I think l would try and change my gp within the practice before going private. I have had so much grief with this problem myself. It would be extremely expensive to go private. You could try and get a referral to an endocrinologist which takes a while. See what your next TSH level is. Dont take your levothyroxine on day of blood draw and get an early morning appointment. I actually up mine myself to try and get my level about 1 or 2 not above 3. Its so frustrating I'm 62 female and been suffering like you have. Be a bit more insistent of feeling terrible l am. They dont like giving too much as they say it can be harmful. It's your body and you want to feel better. Good luck to you
Thanks for your reply. I did actually speak to another GP in the practice, she also said no! I think you're right about perhaps laying it on thick and saying how bad you feel. The problem for me is that I have muscle/ joint pain in my neck back and shoulders, and brain fog, low mood etc. So then my GP thinks I have a back problem, and depression 🤷. I've never had bad fatigue or weight gain, which is perhaps more typical. I think I'll have to tell her I'm exhausted!
Yes and then you'll be told you're depressed, menopausal or fobbed off with a Fibro or Chronic Fatigue diagnosis and offered antidepressants and CBT. Because they won't admit its your thyroid.
According to Medics hypothyroid is ridiculously easy to treat, just a take a daily little pill and as long as your blood tests sit somewhere in the range then any remaining symptoms must be down to something else.
You’ve hit the nail on the head! A dr recently told me to “….consider, y’know, CBT to come to terms with your, y’know, lack of diagnosis.”
You can imagine how desperate I’d have to be to see her again!
I was diagnosed ( mistakenly) I believe with Vestibular Migraine in 2022. Unsurprisingly being dizzy and unbalanced 24/7 is linked with anxiety, well who knew? I defy anyone not to feel anxious when every step feels like you are on a trampoline or a storm tossed ship.
So trying to be proactive and wondering if anxiety was a cause or a driver of my condition, even though I dont consider myself an anxious person, I decided to self refer for CBT, at first they wanted me to do it online, which was a joke as scrolling, movement and bright screens set my symptoms off big time.
In the end I managed to get 6 times 30 minute sessions with a therapist. Time I'll never get back. What a complete waste it was, I think the only useful tip I found was looking at problems as either real and something I can do something about, or hypothetical, that haven't happened yet , might never happen, but maybe something I might worry about.
So whilst a broken boiler is something I can do something about ( assuming you've got insurance or the cash) worrying about a loved one dying in a plane crash is only hypothetical and unless you forbid them from ever leaving the house, something you can't change.
You'll be surprised to know that it didnt do anything for my Vestibular Migraines. Which rather disappointed me as the NHS and politicans seem to think CBT is the answer to everything.
Well said Sparklingsunshine, I couldn't have summed it up better myself! 😀
hi Cat_bluenote sorry you are not feeling well still. I find getting a good GP essential in the early days. If I were you I’d have talk explaining to my GP the dose was ineffective and if they don’t listen ditch them for a new NHS GP. If you are planning to go private for thyroid problems I’d skip the GP all together and go to a private endocrinologist. Good luck.
Thanks for the advice. 🙂
hi. If you private message me I can send you details of a private thyroid doctor who you can have online appointment with. I’m under her atm & been happy so far. Much cheaper than a private endo.
Thanks
Hi.
From my own experience, if you can afford it, I would seek out a private Endocrinologist.
I had to as my GP is clueless on the subject of Thyroid and for my own health sake I had no other option but go private and am still under the care of private Endo. Trouble is NHS only do basic testing which doesn't give a full picture of what is going on. I done various private tests which showed I had Autoimmune Thyroid Disease, having been on medication for 6 years. I have been on a low dose of Thyroxine courtesy of GP for many years although I am on a slightly improved dose now via Endo. The Endo will write to your GP with any recommendations in change of dose etc which is what mine does. My GP does not query it because the Endo is more qualified on the subject than he is!
I do feel for you it is so frustrating dealing with GPs who have little knowledge on the subject. There are many on here who have the same problem.
Good luck.
Thanks. I'm definitely going to look for a good endo.
Brilliant!!! 👍
There's a philosophy and authority among doctors whereby, if they don't actually know what is causing a patient's symptoms, they can try various treatments (including thyroid medications) to "rule it out" (that it's thyroid related). Doctors enjoy this autonomy; it makes their job easier.
When a doctor refuses to do this, to offer a trial dose of something...anything, something else besides medicine is on the table, most likely their concern about liability or following what their peers are doing so as not to be blacklisted.
You are encouraged to learn as much as possible about thyroid disease and treatment, but to have any chance of persuading a doctor to appropriately treat your thyroid illness requires a different skill and that's being able to negotiate...to use critical thinking skills. It's not necessary to be belligerent or combative with a doctor; there's such a thing as using empathy (as it relates to negotiating).
To say that there's a lack of communication between thyroid doctor and patient would be an understatement. I realize that most patients are terrified about asking their doctor "Why not?" when it comes to receiving adequate thyroid dosage increases. There's the possibility of being 'fired'. I know that experience well. But continuing to see that stubborn doctor while remaining silent will only stretch out the time necessary to get well.
I believe that doctor's aren't 'ignorant' and 'stupid' as much as they are ideological...they remain steadfast to what I call the teachings of the Church of Synthroidology: TSH → T4 → out the door you go because you're cured!
Doctors will be resistant to being 'educated', it's not what they need. They already have the flexibility to prescribe as they see fit. Getting to the actual reason why doctors don't seem comfortable using a little thyroid creativity is the patient's mission, should they choose to accept it.
You can always ask the doctor, "Is there something you're afraid might happen if you increased my thyroid dosage?" and "How do you feel about treating thyroid disease?" and even, "You don't seem that comfortable with treating thyroid patients...can you recommend someone who is more comfortable prescribing thyroid medication?"
I totally agree with what you're saying, but unfortunately my critical thinking skills deserted me during the last year. Been struggling with brain fog/ short term memory loss etc. When you can't remember the words you want to say and keep losing your thread you aren't likely to be able to convince your GP that you're right and they're wrong. 😆. I'm probably gonna take the easier route and hopefully find someone who will test T3 , T4 and prescribe an increase 🤞
Terrible, I would be so ill with that result. If on medication your TSH should be about 1. If your doctor won't medically treat you properly as him/her to refer you to an endocrinologist.
I don't think they will unfortunately, because although it's high it is in range! That's the most important thing to them. Exasperating 🤷, thanks anyway.
You should have some good reference books on your shelf to go back to time and time again to learn how the Thyroid works and where and why your medications work and sometimes don't. One of the books is by Paul Robinson (he has a FB page and website.) The book: The Thyroid Patient's Manual. When you are empowered with knowledge, your Doctors are more likely to listen to you. Best of luck. We've all been in your shoes. I'm from the USA (the most advanced country medical wise--NOT!!)
Thank you. I'll take a look at that.
Hi, I was looking for a private endocrinologist some 13 years ago, as I began to have bad toxic reactions to Levothyroxine and my GP would not do any tests - vitamins, iron etc, just insisted that I could only have Levo. When I stopped taking Levo, he was happy for my TSH to be 150. Thanks to the lovely people on here, I found a top private endo in Leamington Spa - long story short she did some tests, really listened to me, and eventually 'persuaded' my GP to do all the tests he had refused and prescribe Liothyronine, as it was the only other thyroid med licenced in the UK. There isn't any reason why you can't go to a private dr for a specific issue and stay with your current practice for everything else - BUT - a few words of warning. I had to be referred by my GP, who said he would do it if I agreed to go to a CFS clinic, which turned out to be a Mental Health Assessment, nothing to do with CFS. There was a huge row about that, his lies etc. I hated him for doing that, but I did stay with that practice as you tend to get a bad name for being 'difficult' if you keep changing. The best thing, if you can bear to, is to sneakily schmooze and flatter your GP and get him on your side. I don't mean anything dodgy by this, obviously - but if they don't know or don't care, getting them onside is better than leaving. I was only able to do this (train your GP!) because my private endo was at the top of her profession and well respected. If you are tolerating Levo but are undermedicated, it may well be less of a complicated nightmare for you than trying to change meds. Hope this helps a little. Just wondering if you still have to be referred 13 yrs later - I had an eye op last year and was able to just go to a private clinic and refer myself. The surgeon did inform my GP, but I didn't have to be referred. It was something the NHS wouldn't do, so maybe that was why I didn't need a referral. Sorry for the long post.
Hi thanks for your reply. It made me laugh , the idea of flattering and schmoozing my GP 😆 can't say I'd be good at that. But I don't specially want to change GP because I think the others in my town might be as bad! I'm gonna look for an endo recommended by UK thyroid and see if I can get them to increase Levothyroxin. 🤞
That's probably your best bet. I did wonder if I had given the wrong impression about 'schmoozing' my GP! He may have been easier to train because I could probably have got him into trouble when he said he was sending me to a non existent CFS clinic which turned out to be a Mental Health Assessment. The kind where if you don't say what they want you to say, they make it up. The 'report' was complete fiction and these days you get to see a copy. I had a massive emotional row with him along the lines of 'how could you lie to me like that?' and wrote a true version of what had happened at the 'MHA' and asked for it to be put in my medical records. But I didn't take the complaint any higher, so between the private endo making him do the tests and prescribing Liothyronine, and me, he was in a bit of a bind. His excuse was 'it was just a way in' - into what, who knows. Just another thought, yrs ago when I was on Levo, and I complained of fatigue, the GP (a different one) used to put up the dose, saying if you feel better, we'll know it was the Levo. As it turned out, increasing the dose never made any difference - until after 12 yrs it had a toxic effect. I don't know if it could be as simple as complaining of fatigue, or you might have already tried that. Just an idea, good luck.
Hi Cat - sorry you’re experiencing this with your GP. I very much had the same problem. They told me my TSH would need to be above 10 before they’d prescribe any Levo. I used Thriva for private blood tests as they can be cost effective. Once I got the results I wrote to my doctor saying I didn’t believe I was getting the appropriate care. I was very clear about my thoughts.
I wrote a list of the blood tests I wanted doing including all thyroid profile plus TPO, TgAB, cortisol and a few more. They were pained, but they did it.
Once the results came in my cortisol was so low they panicked I had Addisons disease and had to refer me to an endocrinologist for a synathn test. Obviously that was fine and the endo said you need Levo - which I got.
My point is be bold (and polite) with your GP. Go armed with some knowledge and ask for a referral to an endocrinologist. You don’t deserve to feel crap whilst you wait for your thyroid to completely fail.
Recently my GP stopped my prescription because my TSH came down to 3.37. I explained it’s because I’m on Levo and they needed to reinstate the prescription and speak with the endocrinologist before they made any changes again.
You do have to try your best to take control of the GP as best you can.
Good luck.
Thanks, I did just get an increase to 50 mcg daily, as TSH went up to 6.87. Just waiting now for next tests in 6 weeks. ( I know that 50 mcg probably won't be enough levo) Unbelievable that your GP tried to take you off Levo! It makes you lose all confidence in doctors.
That was a good idea, writing to your doctor. Perhaps I might try that. I didn't have any luck in person at my appointment, I did go armed with my NICE guidelines, she just said she'd have to check out other reasons for my symptoms!
If I have to pay to see an Endo to get to optimal TSH eventually (and hopefully feel better) then so be it. I can't stand the "let's check again in 2 months" but actually doing nothing for me, anymore. They run other blood tests that never show anything wrong. But meanwhile I'm left in pain and depressed. Sorry for rant, getting exasperated.
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