I finally had my long-awaited follow-up with my endocrinologist yesterday, but unfortunately ended up leaving in tears. No luck with T3 (which I sort of expected), or really much of anything, to be honest. We did do another blood test, but I'm not really sure what to expect from those results, and I'm not really sure that I care anymore, anyway...
I think if nothing else, this appointment sort of helped me to begin making peace with the fact that I'll likely never be normal again; I haven't been for years now. I'll never not have a chronic illness, so I guess I have to stop trying to ignore that fact and stop driving myself crazy trying all sorts of medicines and speaking to all sorts of doctors in a futile effort to try and live as if I'm normal when I'm not. I think constantly getting my hopes up and having them dashed over and over is probably worse for my mental health than even being ill
I don't know if there are any doctors out there who won't just tell me that it's all in my head, so I'm pretty close to deciding that I'll just stop trying to convince them. This whole journey, from being overactive with Graves' to underactive with no thyroid at all has been emotionally painful all around. What stings is that medical professionals (or at least all of the ones that I've encountered) really couldn't care less about you or your problems once you've lost your thyroid. I'll wait to see what the results of my blood test are, but I think I'm pretty close to just giving up fighting to not be seen as a hypochondriac or a burden to any of the doctors I speak to. Maybe it's time I start self-medicating after all.
Thank you everyone for all of the help, kindness and information you've given me since I joined this community. I really do appreciate it, but it gets hard to come on here and face it all sometimes.
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lau99
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Most people without a thyroid need T3 or NDT. I would self medicate if I was you because I have done it in the past when I needed to. I have gone rogue because the NHS have never helped me and even when I had a thyroid storm last year and was admitted to hospital they only tested the TSH. You can read my story on my profile page if you are interested. Also don't give up I nearly did when my doctor refused to help but at the moment I feel well with the help and support of people on this site and others in the US.
Thank you x I think I very well may have to start self medicating, though I really didn't want that to have to be the case..I do feel quite defeated so giving up is also looking tempting recently. Maybe over the holidays I'll just give myself a rest from all this thyroid drama and start making some changes in the new year.
Why would I want to give money to someone who knows less than a lot of people on this site? Thank you for trying to help but I have researched this for the last 10 years and until the NHS changes their guidelines I won't be asking them for help with my thyroid disease. I have already self medicated and it did help btw.
I understand your frustration Perhaps because this is all relatively new to me, I may not be very experienced with dealing with doctors. But, as let-down and heartbroken as I am that they seem to have all stopped caring about me now that I have no more thyroid per their advice (that I now see had the cruel ulterior motive of making me a much 'cheaper' patient than when I had an overactive thyroid), I still feel that if I could see a doctor who was not only knowledgable, but compassionate and didn't make me feel like I was "broken" or making things up, I absolutely would. There's a strong emotional element to the suffering I think many of us have endured, and if I could just have a doctor who would listen to me with kindness and earnestness to walk me through getting my health to be better, I would personally rather that than having to go it all alone. I guess I might be a little naive, because I want to believe that there are still doctors like that out there who I just haven't met yet. But if they truly don't exist, then I will go down the self-medication route.
But advising a young woman who’s going through a lot to start self medicating is probably not the best guidance, as I am assuming you are older than she. I know Lau is very young. But support is what she needs right now. It’s all trial and error as to what works for each individual.
Yes she is a young woman and I don't want her to become very ill because I believe there are not many doctors who will help us in the UK. If I could recommend someone I would. I actually worked for the NHS and I am very disappointed by the way they treat thyroid disease sufferers. I have tried for many years to get the correct treatment and it has been a very hard struggle to even get the correct blood test for thyroid function. I actually have Graves' disease written on my NHS records but my surgery only ever tests the TSH so I now pay for my own private blood tests. I am sure she will research everything that has been suggested by members on this site and then make her own decision.
I currently take 175mcg daily It doesn't quite work as well as I feel 200mcg did, which I had been on from last December until July of this year, when I was told to go down to 150mcg, which I remained on until October(?), when I went up to 175. That's roughly what I think the months are, off the top of my head 😅
I get what you mean but this site is a support site and all of us share our experiences and what has worked for us on here. We are not medically trained but I have spent the last 10 years reading up on thyroid disease and I have been a member of a lot of sites in the UK and the US. I think if the NHS took more of an interest in people with thyroid disease and actually educated their doctors about it there would be no need for a site like this one.
I am sure the OP will make her own decision on what she thinks is best for her. This is what I have done myself and I always read what others advise me and then I decide if it is right for me.
Thank you for this input, Meanbeannyc I've been thinking about that a lot as well...this situation has definitely given me no shortage of things to think about. I don't really want to start self-medicating, but I feel I'm not being given much choice. I'm still quite young and possibly naive (and maybe too much of a pushover in doctor's appointments), so I really want to think of self-medicating as a worst case scenario. I do feel it's a bit of an unfair tradeoff though - either I have subpar support from reluctant nhs endos and feel ill forever, or I try to get well on my own and lose all of my support. I think the options I've given myself are as follows:
a) If poor absorption /fillers in the tablets are my problem, I'll see if it's possible for my endo to prescribe me liquid Levo and try that for a couple of months to see if it helps. I have already contacted my current Endo's secretary today so I am waiting to hear what my endo thinks of this idea. (Also find out my bloods/vitamins in the meantime).
b) If that doesn't work, try having a (one-off?) consultation with a private endo, who might be more willing to let me try T3 and will give me guidance on how to do so safely + with the correct dosage. Since I can't really afford a private prescription of the stuff, I'll self-source the T3 but use his/her instructions on how to take it.
c) If all the above fails, I suppose I have no choice but to go completely solo and self-medicate entirely.
So, as you can see, it'd be my absolute last-ditch effort to get well by totally taking this all into my own hands.
Lau it seems like you have a great plan and great idea. And I wish you luck.
If you felt well on 175 levo, couldn’t you just stick on that?
I’m going to assume absorption is definitely one of your issues as your FT4 is very low on very large doses of levo. As @greygoose has taught me, absorption issues aren’t invisible.
Thank you I'll be sure to keep coming back here to document my progress. The most well I've felt since thyroidectomy (besides the first month or two afterwards) was probably when I was on 200mcg, but even then I still wasn't 100%. I reckon absorption must be an issue somewhere - I'm still relatively petite (even though I've gained quite a lot since becoming hypo) so 200mcg is a pretty huge dose for me. Since going down to 175mcg I gained around 5kg in only 3 months
That's more than okay, I wish my doctors were as willing to listen to me as you and others on this forum are I'll do my best to keep looking for solutions and try not to give up or get disheartened. I hope you're doing well x
Thanks lau99 . I’m sorry to report that I don’t feel very well either.
It sounds like you’re a very intelligent young woman, by the way you write and your mature outlook on your current situation. I wish I had more to offer you.
I’d be a little wary to self medicate on ndt. If you do decide to self medicate on T3 meds please be careful as it is very potent and should be handled with care. Look to advice on here first.
Thank you, Buddy195 x I've been trying my best to avoid having to up until this point, but it's starting to look like that might be my only option to feel well again
Have read through earlier post but cannot see any results for B12 - Folate - Ferritin - VitD. Perhaps I missed them somewhere ! If they are low in their ranges it can contribute to poor conversion of T4 into T3.
Have you read any of Tonia Smith's articles on here ? - often posted by diogenes. Will have a search and get back to you ... 🌻
Thank you for the resource, Marz I will have to phone up my GP for the exact numbers, but I've been told not too long ago that all my vitamin levels are looking 'good' and within their normal ranges. I'll have to come back here once I've either done some private tests or gotten the numbers that my GP was referring to.
Yes they love to tell you that your results are fine/normal/OK - when they mean in range. However it's good to be optimal rather than bumping along the bottom of the range ! It can make a difference.
Always ask for copies of your results so you can monitor your progress and check what has been missed ! They are legally yours. Ask at Reception for back copies - you do not have to give a reason. Start a new post with your results so more people see them and offer advice 🌻
I must admit, I forgot to ask my endo about whether or not liquid Levo might help me, so perhaps I'll ask his secretary to have him give me a ring so I can see what he says. I have considered lactose intolerance, but because I don't really have any discomfort per se, I haven't really explored it as a possibility very thoroughly. I won't rule it out, though. I always get the accord/almus brand Levo, and also take Vitamin D supplements.
I believe the last test I'd had for vitamins was around 8 months ago? But I've yet to see the actual results. I'll have to ask to see them next week, or maybe just order a private one to get some more up to date results.
NHS will only test for and treat vitamin deficiencies
We need OPTIMAL vitamin levels
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
Thank you for this information, SlowDragon. I'll make sure to ask about this after the weekend and see what particular vitamins have/haven't been tested.
Thank you Lotika, that's really kind and encouraging to hear. It's just becoming so hard to be strong; I feel like I'm getting nowhere with any of this.
It is so hard. I’ve been reflecting a lot on my own journey today and I’m very hopeful that I’ll find I have T3 on the NHS in the next few days.
That, of course, is great. I can’t sleep because I’m asking myself why I feel better. I have been fighting for T3 on and off for 3 years now. Nobody would even test my T3 levels. I see an endo yearly for a different issue and they wouldn’t. Every medical professional I spoke to told me that my T4 and TSH were fine, so what ever issues I had with memory and brain fog and hair loss and body ache were written off as a stressful job / poor self care, bereavement, you name it.
I gave up at regular intervals. I have questioned my sanity and integrity (and wondered if it was in my head, if my mind was making it up for obscure reasons unknown even to me!). I spent a fortune on counselling.
The fact that an medical registrar is fighting for T3 with the endo for me means I do feel better today. He’s given me my sanity back. I’m starting to see that I can trust myself again. I stopped trusting what I thought or felt about anything, let alone my health, because every medical professional I spoke to told me I was wrong. It seeped into every area of my life. I got made redundant in January and I question whether I lost my job because of this. I could no longer travel for work...
Well, back to you. Your hope had been dashed and you are unwell, exhausted and questioning yourself. By all means take a week or two off from the fight if that is what you need. But don’t stop. If your GP isn’t helpful try all of them in the practice. That was one of my mistakes - kept seeing the wrong GP. See what you can achieve by going it alone here, perhaps? I never had the courage of my convictions for that, to be honest: I’d started to believe them to an extent and felt like a victim. I told myself that either they don’t understand it, or I’m wrong. It’s true that lots don’t... And that’s the part they take from us, albeit by accident and with the best of intentions: they take our sanity, our confidence, our belief in ourselves as the people who know best how we’re feeling.
I got where I got because whilst the GP told me (again) that it probably wasn’t the hashis causing my issues, he listened and checked for other AI problems and checked my T3. Finally. I was able to show the medical registrar the T3 results, and tie them to the fact the symptoms had never gone with T4. The GP also medicated me for the joint pain (naproxen) so finally someone had listened, even if I didn’t think I was getting anywhere, because he still wasn’t actually listening about the hashis. But he believed in the pain, which was a start. I’d utterly forgotten about the endo appointment until I had a reminder the day before: that’s how little hope I had left. And they’d fobbed me off annually anyway!
Anyway, that’s a lot of waffle from me, but I hope you see what I’m trying to say: it is not in your head. Do not question your sanity. I wasted 3 years doing that... Don’t let them take away the fact that you, and you alone, know how well you do or do not feel...
Wow. You and I have had the same 24hrs by the sounds of it!!!!
I too had endo appointment and he basically binned me off and my mum is trying to convince me to take anti depressants so I feel like nobody really believes how sick I feel.
I too had graves and had RAI and life pretty much ended nine months later. That was five years ago and round and round we go.
You are really poorly and need someone to back you, to want to fight for you, to take on the challenge and not quit until you are well. I have been assured on here that good health is possible which is why I keep on. Like you sometimes I think accepting it’ll never change might be easier but I really would like my life back.
Day or night the guys on this forum will always be here for you. I wish I could help you and I really wish you well.
Don't go down the antidepressant route because they will make you feel worse. I have been offered them a couple of times and my GP actually made me an appointment to see a counselor when I had a suppressed TSH of 0.002. I nearly gave up a couple of times but I am glad I decided to self medicate and do my own blood tests. Sites like this one know more than some Endocrinologists in my honest opinion.
My mum had depression so she thinks it’s the same thing. I don’t think it is at all and I even tried some when they suggested depression when I first got sick. They did nothing apart from make me not care. I think it’s the only way to convince my mum that I am sick!! At the same time I’ve got nothin to lose apart from being spaced out and feeling worse for a few months probably
I don't want to take anything that makes me feel dopey but I do realise they do help a lot of people who are depressed. The only time I have felt depressed is when a close family member died or my levels were too high or too low.
Yes, we do sound quite similar!! The only difference I can see is that I ended up being convinced to go on the antidepressants, so am now on 75mg Sertraline. I really have been feeling so, so low from all of this that it probably was a wise decision for me personally to go on them, just to make things a bit easier on me day to day. Ideally I would like to not be on them if I can just get my thyroid stuff fixed. Thank you so so much for the kind words. It's easy to forget to cut yourself some slack after a bad doctor's appointment. I hope we can both start to feel better soon x
Morning mate! Well, guess what?! In t the beginning they said it was my iron, then they said depression. I knew nothing but used to go in with scraps of paper about TSH and T3 and they looked at me like I was mad. I refused anti depressants and left but out of desperation agreed to take them just so we could move on to the next suggestions. The next was CFS and they brushed their hands of me. But I was on sertraline for four years and they were quite happy to leave me on them!! All they did was stop me from caring that I was sick. Thankfully I came off them over new year. I had flu and didn’t take any medication and just stayed off them. So glad. Nothing wrong with them and nothing wrong with taking them if you’re depressed but something very wrong with how keen they are to throw them at you and something very wrong with how they don’t check in to see if you still really need them! Then comes the anxiety about what will happen if you stop taking them. They dulled me and made me feel awful to begin with and it reinforced the idea that it was me that was the problem. I hope that they help you buddy, god knows you need a hand right? Wishing you some good luck and good health!!
Yes I too was given anti depressants as a consolation prize for not being well on Levothyroxine.
I was on them for about 4 years until I came on here and started reading and with my dyslexia this meant writing out whole chunks of information offered freely by the Admins and then reciting the content until I had learnt and armed myself with the necessary information to present to the doctor.
It didn't help me with the NHS but it has certainly held me in good stead and now my brain is back and firing on all cylinders ( most days ) and I am feeling so much better doing my own thing.
It's not ideal, of course I'd like some understanding, and feel I have a back up plan, but I only find common sense on here.
my heart goes out to you lau99. I get to feel the same when I've had yet another unhelpful round of appointments that leave me feeling disbelieved and wasting their time and yes its "all in your head". Some doctors infer that even without saying it!
I feel beaten and carrying on seems pointless yet again, but at some point I rally and won't beaten by the 'system' for want of a better phrase (word loss affects me greatly so I don't always find the word I want to use).
We need you to keep up the fight and together we will get there.
They are only really just acknowledging how vital Vitamin D is!
If you can afford it, do what you can privately, tests etc but I know many people can't afford to do so.
You're definitely right about doctors seeming to use as many words as possible to say "you're just imagining things"!! I felt so embarrassed to even be in the doctors office that day. He wasn't even unkind so me necessarily, but some of the things he told me really stung. Thank you for the kindness and encouragement, SallyB. Even if they can't always help us, I just wish that doctors would be a little bit more sympathetic sometimes
I have just watched Dr Renee discussing both hyper, and hypothyroid on her You Tube blog :
As you know she went through thyroid surgery and now needs to take both T3 and T4 in order to function.
I know we have been here before but just thought if you haven't listened to these you might like to because she explains exactly what you have been through and where you are, and you are not alone in all this as the system has failed you - it is not your fault - that these people either do not know their job, or can't, or will not, put their medical careers on the line which is how I see this situation, with CCG's having financial control over medical matters and that we all are likely to face and deal with as best we can.
The issue is to be referred to an endocrinologist with sufficient " pedigree/clout " who is not intimidated by CCG's and knowledgeable and strong enough to stand by the medical evidence which is that you have had a thyroidectomy and lost your own T3 and T4 thyroid hormone production, do the right thing and medicate you accordingly - with T3 and T4 :
If you take a step back " out of the Devon CCG " how's does the land lie back in North West London regarding T3 prescriptions and CCG's ????
Isn't this close to here Dr Renee has her surgery, which I think is NHS and private ?
Presumably you have a family doctor there, is this something to consider ?
I do wonder if your original consultant who you say " gave up on you " didn't give up on you, but threw his hands in the air because of the financial constraints he found himself having to work under ?
Thank you for your wisdom as always, Penny. It seems that the situation in West London's CCG is even more dire than here in Devon; the relatively high prescribing numbers of T3 here is what initially gave me some hope in my new doctor. He told me on Wednesday that T3 prescriptions in England are becoming so scarce that it's been flat out banned in some areas. He seemed to think that Devon won't be too far behind. If I don't end up self medicating, I think I will have to book an appointment with Dr Renee.
Yes I think the issue maybe more with new patient prescriptions but either way, it's simply wrong when you have a medical need, as you and I both do, though I've currently solved my own situation.
It seems thyroidectomy patients are thought more likely to need T3 as surgery would have removed the gland and you carry the scar:
Patients treated with RAI which burns out and disables the thyroid in situ never even get a follow up scan to even see if the treatment worked !
It's all so tiring and I'm so sorry you have been let down so badly.
I am curious about maybe trying it, but its dwindling stock and inconsistent concentrations between batches makes me a bit wary...I can't help but feel like it may not be a long-term solution for me for those reasons
I'm really sorry to hear you're going through something similar Thank you for reaching out and being so kind x I hope we both start to feel/get treated better soon.
It's hard to say, since the only bloods I have from being TSH supressed on T4 only were from when I'd only just taken my medication a few hour prior. The results are therefore skewed, from what I've been told here, and my T3 was still not very far through the range even with the false highs. I did feel slightly better on the higher dose, but not by very much.
My endo and I both think that this is likely an issue, not caused by my diet/coeliac or time of day that I take my medicine, but I believe that it's because my main hypo symptoms are gut-related so it's led to a bit of a vicious cycle. I'm hoping that if I can get some T3 to add to my levo and be very very careful about taking my meds properly, that I can kickstart my gut a bit with the added T3 to aid in absorption of the hormones.
I've thought about this as a possibility as well I forgot to bring it up at my appointment on Wednesday, but will phone my endo's secretary tomorrow to ask about it.
Hey there Lau - please also ask the secretary to forward to you all your blood tests results to include the vitamins and minerals - ferritin, folate, B12 and vitamin D and the ranges : as your lack of absorption could be compounded by these.
You don't want comments that they are, or were normal, you want the actual results and ranges. xxx
Do you have Patients Access at your surgery? I don't even have to talk to the receptionist because I can log in and read all my blood tests and records from the last 10 years.
Yes I do It's just that in the last few months I've had to start going to a hospital outside of the county where a lot of my bloods are done, and the two counties don't communicate with eachother as far as test results and medical records go. I have to give them a nudge so that they contact my GP, who will then make the results available on Patient Access. All a bit of a to-do, really.
It is a great pity that nowadays doctors or professionals in the UK cannot prescribe the thyroid hormone replacements that some people need to restore them to good health and symptom-free.
A majority of members on this forum have also had to 'run a gauntlet' but eventually were able to restore their health.
The fact that you have no thyroid gland at all, should permit the prescribing of T3/T4 at the very least. Considering that the Organisations have now withdrawn NDT (safely used since 1892) through False Statements, whoever made this decision are not doctors who are capable of helping patients recover their health and are definitely in the wrong profession.
Before NDT we just died a prolonged death.
They've also withdrawn T3 in the UK unless it is prescribed by an endocrinologist but quite a number of professionals just do not believe how very unwell a patient can be if their conversion of levothyroxine into T3 does not restore their health. The burden also impacts on the whole family.
I do wonder how endocrinologists chose their particular field, i.e. to restore patients to good health if their thyroid gland isn't functioning as it should.
Endocrinologists seem to be led by rules/regulations that backfire on many patients. They seem to be restricted to what they would like to prescribe or otherwise lose their jobs.
Before blood tests were introduced as being a 'definite' way to diagnose a patient with hypothyroidisn/hyperthyroidism, doctors were trained in 'all clinical symptoms' and patients were given a trial of NDTs. From 1892 hypo patients didn't die. Instead of progression we've now got retrogression
Now that we are in 2020 we seem to be worse off than patients who were born in the 1800s. Many GPs have no knowledge on how to diagnose a patient, without blood tests or even with blood tests as the concentration is not upon the patient but on a print-out on a piece of paper.
I've personally experienced this when the doctor told me that T3 converts to T4.
The NHS is supposed to be 'free' to everyone whether rich or poor so why restrict patients to a synthetic T4 (inactive hormone) when a patient is clearly not recovering upon it.
Unless a person has actually gone through this myriad of 'trials' - eventually have no faith upon doctors or endocrinologists who have to 'toe the line' with the threat of losing their livelihoods if they do not.
This is a world-wide problem I believe and even in the UK it just doesn't make sense to those who reside here that doctors/endos seem to be completely deaf to appeals from patients. Who has the most knowledge of the symptoms - the patients' or doctors?
It will be interesting to find out the results from being on 175mcg.
And see where your TSH is at now.
It was odd, (and annoying) that at last test on 200mcg (with the skewed results) TSH had fallen so low, given that it had previously been stuck up at 4 even on 200mcg, and that was the reason for referral.
on 200 mcg ---TSH 4 ------no fT4 ----------no fT3
on 200mcg ---TSH: 0.01-------- T4: 30.8 ---------T3: 5.4 -----(Levo taken before test)
The fT4 on 200mcg would be skewed by recent Levo dose , but the TSH should not be affected much on the same day by taking Levo. In theory TSH would take much longer than a few hours to move that much.
I agree, that was very strange indeed. I hope that the huge discrepancy between the 200mcg results and the 150mcg results hasn't started my endo thinking that I have poor compliance; I'd do anything to get better and wouldn't dream of purposefully missing doses I did mention that I have been having problems with throwing up recently, so I think he suspects that I might not be able to keep the medicine down consistently enough to have stable results?
Unless you were sick within a couple of hours after taking dose, it "shouldn't " matter .And even if you were , one day wouldn't account for these big differences in your results.
How often were you being sick ?
I'm afraid you have to accept that 'not taking Levo correctly and regularly' is the first reason any Endo of Doctor will think of to explain results they don't understand.
It's nothing personal.... they do it to everyone.
Chapter one , line one, of the 'how to interpret odd thyroid results' manual always say's "check patient compliance.
I'm really happy to hear that I'm still holding out some hope that it won't have to come to that for me, but I wouldn't be opposed to it. I want my life back too
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It doesn't quite work as well as I feel 200mcg did, which I had been on from last December until July of this year, when I was told to go down to 150mcg, which I remained on until October(?), when I went up to 175. That's roughly what I think the months are, off the top of my head 😅
Disappointed but not surprised !
Very disappointed with the endocrinologist I've just seen :(
Disappointed with my new Primary Care Doctor
Disappointing phone consult & raised TSH on meds
So disappointed! Warning: this may turn into a rant ;-)
