Feel free to check my previous posts for a bit of background.
Friday was dreadful, I was totally dismissed by a GP from my surgery (not my usual doctor) who said my results were fine. The results in question:
FT4 12.1 (12-22)
TSH 1.82 (0.27 - 4.20)
Anyway, I posted on a local forum asking for advice on a new surgery and recommendations as I had had an unpleasant experience with my current one. The doctor in question actually saw this post and replied to it, saying they were under significant pressure and why hadn’t I just called him back to talk about it (he was curt and told me there would be “no debate” about his choice not to help me so what was they point in calling back?!)
He then phoned me directly this morning and said “I may have dropped the ball on this one, I’m not an endocrinologist and the results looked fine to me but I can see you are symptomatic and I want you to come in on Friday so we can see if we can reach an agreement on your treatment going forward”
My problem now is that I’m panicked that actually my results ARE fine, maybe I’m just a bit pathetic and should be coping better. Being cold, anxious, can’t lose weight, nails breaking, utterly exhausted… maybe it’s depression or something.
What I suppose I’m asking is ARE my results worthy of a Levo trial? Can I really be feeling so horrid with these results?
I researched over and over, I’ve combed the forum, I tried to advocate for myself and stand up for what I think I need and I’ve had my resolve so shaken that I’m now afraid maybe he was right and if I do take Levo I’ll make it all worse.
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AbigailHolywood
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I don’t have any advice unfortunately but just wanted to say that you’re not alone in feeling like this… whenever I consult my GP re any issues with my thyroid/meds etc they always make me feel like an absolute hypochondriac. Trust your gut feeling 💜
At least he’s admitting he was wrong!!! That’s incredible. Stuck to your guns . If you feel unwell and are “borderline” then having a trial of 50mcgs a day could work wonders.I was borderline last July and it’s changed my life (Levo).
Well done you for advocating for yourself. I bet that GP has had to have some uncomfortable conversations at his practice 😂
Thank you so much! It was the most awkward 9 minute phone call I’ve ever had, must have been tough for him too 😂 I suppose it’s very silly that I stood my ground and pushed and now I’m wavering lol! My usual GP was so supportive and said she would treat me if my bloods were the same as last year (which they were) so to get the results back, phone up thinking great this is finally getting sorted, and then be shot down in flames was very distressing and now I’m overthinking it all? I really hope someone who has similar numbers can throw some light on it and confirm they feel rubbish too, just so I can tell myself it’s not just me being weak x
Oh how odd, I hadn’t thought about the headlamps but yes, I’ve been mentioning this to my husband during in night drives for a while now. I wonder what causes that? Thank you so much for sharing, it’s all helping me feel less like a hypochondriac! X
I was lucky - it became noticeable in spring and I was distinctly (but not totally) better by the winter. That meant I had very little driving in the dark at my worst.
Whenever I am asked, I forget things. Dry eyes. Short occurrences of double-vision in one eye only.
Absolutely not ok that your GP was making you feel like that. My figures were borderline too and my GP offered a trial. It is in the NHS guidelines. You did well 👏
Honestly, thank you so much! I was beginning to really doubt myself, it can destroy your psyche when you are told it can’t be happening and you know it is!
We all do it, especially at the beginning of our thyroid journey when having a little knowledge and astonished to find that we know more than the medical professional who sits before us telling us the wrong answer.
Thank you! I had such a wobble, I was even told that giving me any Levo with those numbers could be very dangerous as I’m totally fine, it absolutely threw me! The last thing I want is to feel any worse, I’m struggling as it is. I have a feeling it will go to endo referral, there was suggestion that even if they believed it was central hypo they wouldn’t treat me at the surgery, I’d need a battery of invasive testing and pituitary failure is life threatening and rare and I don’t have it anyway, it was a horrible phone call all round!
How awkward and frustrating! Like others here I was also 'borderline' but had been for many years. My TSH finally went over 3.5, ft4 exactly like yours, bottom of range, no ft3 tested back then. I printed out a bunch of papers and convinced my very young GP to put me on a trial. Amazingly it worked. When she saw I was better, the 'trial' became permanent. Just be careful if you do get a trial, that they don't keep you on 25mcg for 3 months and then declare it a failure.
Funny thing too, I did once get a tsh of 6 around that time but i was in the hospital for some other tests and i believe that test had been done very very early in the morning (no ft4 run). All other tests via gp would come back tsh between 3 and 4.
This is very interesting! You raise a good point, I wonder will it be 25mg to keep me quiet and then say “told you do” in a few months when it doesn’t work? Something for me to think about, thank you so much for mentioning this I wouldn’t have thought about it!
No, your results are not fine! No, you're not pathetic, and no, taking levo will not make things worse.
A euthyroid FT4 - i.e. in someone who has no thyroid problems - will be around 50% through the range! Yours is only 1%.
Just a pity they didn't do FT3 to back the numbers up, because the stumbling block here is the TSH, which is actually euthyroid. And, doctors in med school were taught to only look at the TSH. They know nothing about T4 and T3. So, they're the ones that are pathetic, not you!
However, going just by the TSH is assuming that the pituitary - because TSH is a pituitary hormone, not a thyroid hormone - assuming that the pituitary is working perfectly. But, there are many, many reasons why the pituitary might not be working perfectly.
If the pituitary is not functioning as it should, your TSH will be too low to stimulate your thyroid to make thyroid hormone. So, you will have a low - or low in-range - TSH, but also low Frees (like your FT4). The thyroid cannot make hormone without stimulation from the TSH, so the Frees will just get lower and lower. This is called Central Hypo (actually, it's a bit more complicated than that, but I don't want to confuse you right from the beginning! )
However, doctors are told nothing about Central Hypo, will probably never have even heard of it. So, before confronting your doctor, it would be a good idea to do a bit of research and reading, so that you know what you're talking about, even if he doesn't.
In his defence - although I don't know why I should bother! lol - he was just looking at your TSH, as he was taught. They aren't even really taught to take symptoms into consideration, and don't know much about them, either. So, it is really good of him to climb down like this, and give it another go. Just make sure you are convincing when you talk to him. But, on no account accept a 'diagnosis' of depression (he's not qulified!) fibromyalgia, CFS, etc., dustbin 'diagnoses' just to make it look like he's doing something and to get rid of you. Insist that your FT4, the storage hormone, is much too low, therefore the FT3 will also be much too low, and that is the active hormone that causes symptoms when there's not enough of it. Frankly, I'm surprised you're even capable of getting to the doctors, let alone fight your corner! Take advantage of his feelings of guilt and shame on this one, and at least get a referral to an endo.
Grey goose, I can’t thank you enough! From the bottom of my heart thank you so much, this is what I needed to read today. I’m actually quite emotional reading it again, knowing that someone understands. You’re so kind to have taken time out of your day to reply to me, you’ve made a real difference and I appreciate it immensely. Central hypo has been mentioned in previous posts of mine and I’m going to spend this afternoon looking up reputable sources for information to take with me, I think being prepared and somewhat knowledgeable about it is going to be key here. I’m sad, honestly, that it devolved into a bit of back and forth between me and the local GP on a public forum but I was desperate. At least he called and is willing to look again I suppose. I’ll actually post the screen shot below of my reply to him, although not my proudest moment I DID advocate for myself and I suppose that’s something x
Well, that's very good that you did stand up for yourself. Too many of these doctors get away with murder - literally sometimes! - and not enough people question them. They have to learn to be accountable like everyone else. They are not gods! So, it probably was your proudest moment, in some ways. Got results, anyway, didn't it. Well done, you!
Wow! That was a great reply. You really should be proud of yourself. You weren't rude but you got your point across so well. Pretty sure he's feeling very sheepish right now - and deservedly so!
I really hope I wasn’t rude, I did feel annoyed whilst typing so might now have been my wisest move but I couldn’t stay silent any longer, we all deserve to live as well as we can, just a shame we have to fight for it isn’t it?
It's not rude, you just stated the facts as they happened. It is their JOB! When they fail, it needs to be pointed out. If I went to my boss and didn't do my job and just made up excuses, I wouldn't last long. The problem is that they have no accountability to anyone when the patient continues to suffer.
Very very well said. And well done for standing up for yourself!! Your attitude alone will get you far. Keep persevering xx
This is a lovely thing to say and so appreciated! I was really doubting myself and wondering should I just leave it, but there’s so much support here, these messages are keeping me sane! X
WOW 😯 that really is a brilliant, eloquent piece of writing. I think I’ll save it just in case I ever need it for the future. Luckily my GP has known me for over 20 yrs and treated me for many things including PTSD, so we can have discussions about things because she knows I research everything. I think this just goes to show people can educate then advocate to get better treatment.
Such a lovely reply, thank you! Yes, I did waver and question myself but I just kept thinking… if I don’t say something, how many more will pass through his doctors office and be dismissed too? Sent away to live in misery. I will update everyone on Friday and hopefully it will be good news x
Oh thank you! What a kind (and funny!) reply, it’s the first time I’ve laughed since last week so that’s great 😆 I just hope there are answers now moving forward, would be a terrible waste if nothing comes of it all!
Oh something will definitely come from it all given time. For now, rejoice in the lesson you have taught him that could be of benefit to his other patients in the future. As humans we are, at any given time, pupils or teachers, it's called the university of life. Try not to worry about being wrong, especially if it comes from your head. Try not to get caught up in being right neither. At present I suspect that I might have cancer, spread into lymph glands from cancer of thyroid in the past, I certainly don't want be right and would love to be proven wrong. So pleased the quote I sent you had you laughing. I rejoice in your brief episode laughter which is the greatest tonic of all.
Dizzy I’m so sorry that’s utterly miserable, I will keep absolutely everything crossed for you that you are indeed wrong. You will keep us updated won’t you? Sending a very big hug x
Ohh I am ok lovely just mentioned my position to make a point about right and wrong issue. Personally I am in neutral mode at present until tests say otherwise. But similar to yourself I had to do battle to get to see endo next week. NHS is on the decline I'm afraid. You will get treatment you need after your Oscar winning performance with your GP. Levo will be the icing in the 🏆trophy!
I will request these on Friday. Thank you so much. Do you think I should ask for these tests before taking and Levo? He seemed to hint he would be willing to trial it
He seemed to be suggesting he would agree to an off label (whatever that means) trial of a small dose, after the public post I made he was quick to call me directly and pretty much seemed to agree to whatever I wanted if I took it down, which is ridiculous really but I just want to feel well, I’m desperate!
SlowDragon you are a wealth of knowledge, I really appreciate all you do here to help us all. If I could ask you a quick question? I have been devouring the forum, trying to absorb as much as possible. I see a user called diogenes here who is incredibly well respected and knows an awful lot about the thyroid. I saw he commented on a post similar to mine, with a lady with almost identical results and he said that the numbers do not indicate any issue with the thyroid and the problem lies elsewhere. Does this mean that it can’t be hypothyroidism or simply that the problem is elsewhere as in, the pituitary or perhaps vitamin levels? It has thrown me again, but you seem to be the most involved member here and I thought you could shed some light? Many thanks!
If it’s severe or after dramatic accident….obvious head trauma, concussion, whiplash or after significant blood loss during Labour (Sheehan syndrome) then it might get diagnosed….but even then can take years …especially as so often only TSH is tested
Yes there are others on the forum in a similar situation to yourself.
It's horrible being dismissed by the gp particularly when you know you don't feel well and are gradually becoming more symptomatic.
I resorted to writing letters to the gp and practice manager before I was taken seriously as ringing the surgery was very stressful and it was difficult to cope with their dismissive attitudes even though I've been at the same drs for over 20 years.
But it has taken me over two, nearly three years to get to this point; my most recent FT4 below bottom of range (9 with a range 12-22) and TSH 1.5. It's been a real battle to be taken seriously but I was referred (the referral was accepted!) and are now part way through being diagnosed.
My family have a history of autoimmune and pituitary issues; diabetes insipidus and pituitary adenoma and Pernicious Anaemia. The nausea, headaches, and joint pain I experience can be awful but I just have to deal with it and other symptoms as best I can.
On a few occasions when I've felt very ill I have contemplated going to A&E as a last resort but really hoping to avoid doing that. But I do feel like I'm just existing and not living.
Whilst I go through this process I'm trying to improve my ferritin and other nutrient levels to hopefully help myself if I do ever get prescribed thyroxine or whatever treatment they deem suitable.
I'm hoping that I can change the situation for others in my surgery hence why I'm not going to give up yet as I don't want anyone else to go through what I'm going through.
I might be ill but I'm still tenacious and will not give up (though my GP probably wishes I would!)
Oh my goodness, I can’t imagine having to fight for 3 years, you really are amazing. It’s funny you mention pernicious anaemia, one of my other blood results was a bit high (MCHC) and Google suggested that’s indicative of pernicious anaemia, but of course I have no way of really knowing. Can I ask, do you have a peculiar light headed ness? Slightly off balance, fuzzy sort of feeling? Other than the never ending tiredness that’s the thing that plagues me most, although I’ve learnt to live with it x
Yes I do get that sometimes. The overwhelming tiredness is difficult, it's a whole body thing. When I have the nausea it sometimes comes with a not really 'with it' feeling 'otherworldly' detached from reality I sometimes describe it. Fuzzy yes. Very clumsy. Migraine type and forehead headaches.
Brain fog bad, bowels slow & indigestion/heartburn? I always feel hot (opposite to what most seem to experience) What appears to be hyperpigmentation on feet, arms, legs and around my waist though not sure?
When my B12 was low I felt drunk and like my legs weren't attached to my body and were doing there own thing. That's not as bad now.
I'm laughing at myself just now as I forgot about my anxiety and other mental health issues! I think you do try to normalise what you're going through in order to cope.
They've found I have a multinodular goitre with a big nodule but it's benign so that's good.
Hope you start to make more progress. You've come to the right place for support! This forum is fantastic and I wouldn't have got this far without the advice from here!
Yes that all fits for me! I am cold a lot, and then will get unexpected hot flushes, not sure what to make of those! And you are right this forum is a gold mine, I count myself very very lucky to have found it. I hope you receive definitive answers and a care plan soon, you deserve to live well xx
Be proud of yourself... that's thyroid-warrior talk!
It's important that we all take our courage in both hands then quietly and politely refuse to accept a poor diagnosis ( or treatment) that our body tells us is plainly nonsense...as you did!
Thank you so much! I do feel awful, I really do. But when you are told by medical professionals over and over that “it’s in range, you’re fine” you begin to think you’re going mad! It’s scary to self advocate but I don’t see what choice we have. I’m just afraid of standing my ground and being wrong and making myself more unwell, I can’t win lol! X
I've had to work out that I need to self medicate with T3-only to be able to function!I've done the hard yards!
I was convinced there was an answer, and determined that I was going to find it.
(I think my medics thought I travelled by broomstick!!)
The alternative was grim.
I understand how scary you must find this situation
But, like you, I then I found this amazing forum.
It was a group of very knowledgeable and experienced members here who supported me on my long bumpy journey....including greygoose and SlowDragon.
Huge thanks to them all.
My health started to decline very slowly around 50 years ago and medics had no idea what was wrong with me despite numerous tests and treatments over the years, both NHS and private. I'm now aged 76.
Sounds rediculous, but it's true!
But, without that support I would have continued to believe that it was just me who had this problem ( a form of thyroid hormone resistance) and that there was nothing to be done ...but to sit it out as my health continued to decline.
It's a lonely place to be but...
thankfully I also have a very supportive husband
So YES, you can win....believe that!
Members will give you both support and expert information to allow you to do that.
Ideally you need a full thyroid test
TSH, FT4, FT3, vit D, vit B12, folate, ferritin and thyroid antibodies TPO and Tg
Your GP may not test all but now that he has backed himself into a corner ....ask him.
If not we can give you links to private testing at a reasonable cost.
He is probably an OK chap ....just a bit stressed which unfortunately backfired with you
I'm hugely impressed he admitted that he had " dropped the ball"...a good start to build a better relationship with him
Fingers crossed!
The others have already given you good advice...so I'll stop ranting.
Just get hold of a prescription for levothyroxine!
Starting dose 50mcg with further testing 6/8 weeks later followed by further increases and testing ( we can help you along the way) until you recover.
You are stronger than you think and braver than you know!!
You are so lovely! Your words mean so much and exactly the support I need and really needed to read. I can’t believe you suffered for such a long time without help, it’s a form of torture! Your determination to find those answers and live better is the inspiration I need. I don’t want to be here in a decade still miserable and wondering why, I can’t let that happen! You’re entirely right about being backed into a corner, my battle plan now is to request the full blood panel suggested and wrestle a prescription for Levo from him! And no, I don’t believe he is a bad chap at all, he’s quite young (not that it matters) and has been thrown head first into the pandemic, I can only imagine what it has been like for GP’s up and down the country. He’s gone up in my estimations after calling me this morning and offering to try again, at this point it’s all I could ask for x
Hello 👋 me again. You’ve received lots of brilliant advice ( above) so stay strong 💪. Don’t be fobbed off on Friday and don’t let this GP insist you take down your message. It’s the GP that is wrong not you. There are some guidelines that state that you should have a trial of Levothyroxine and 50mcgs is the starter dose. Yes you may also want to look at supplementing vitamins but there is no reason why you can’t do both. Please don’t doubt yourself.There may be investigations about Central Hypothyroidism, there was a suggestion of that for me, but tests showed negative.
There is so much to take in at the moment and it can seem daunting but if you start at the beginning with Levo and vits B,D, ferritin and folate it will all start to make sense.
The support is always on here so keep reading and asking questions x
Wonderful advice! Thanks so much. I’ve been quite frightened of the central hypo possibility, I hope I am allowed to start Levo before an official endo diagnosis but I am doubting it now!
Oh sorry Sarah I should have been more clear, I’m doubting the gp will allow me to start on Levo, I think he might refer me to the endo before he does? Although on the other hand as I mentioned above he seemed willing to consider anything for me to delete my post!
Ok . If it were me ( so this is your choice) I would ask to start on 50mcgs of Levo whilst waiting for an Endo referral 🤷♀️.It could be months before you get an appointment so why not take the hormone you have been lacking that will probably make you feel better, whilst working on getting vitamins in your system.
You have the knowledge now from people here so keep strong and TELL your GP what you would like to happen going forward 🙏
Hi. In 2014 I was found to have antibodies and my T4 was similar to yours and my TSH was borderline high. I didn't feel well but the Dr didn't prescribe levo. I stayed like that until 2020 when I quite rapidly become overtly hypo during Covid/lockdown (TSH 161) and I was very ill. I started levo last year. It doesn't surprise me the Dr hasn't prescribed levo. His computer is telling him your results are 'normal'. What he hasn't done though is provide a reason for your symptoms if it's not thyroid.
Yes precisely this! There was no answer from him when I asked what WAS wrong if it wasn’t thyroid, he was happy to throw me back into the misery of feeling terrible. That TSH of 161 is shocking, I can’t imagine how poorly you must have felt, thank goodness you’re still here! I hope the Levo is giving you some quality of life back. Thanks so much for taking the time to reply, I really appreciate it x
Hi Abigail. Thanks for your kind words. I am certainly a different person to the one I was this time last year. I was a walking embodiment of severe hypothyroidism. A textbook case. Anyway, my only advice to you would be to see another Dr. Your problems may be thyroid, or it could be something else that's either connected or another illness completely. If you are still feeling unwell make an appointment to see a different GP in order to get it sorted out. Take care.
Why did you not see your own GP who had already shown interest, and would have been checking to see if your previous under range fT4 result was repeated ? She sounded like she was concerned by the low fT4 level and might have been willing to offer levo.
3 weeks is really not long to wait if trying to get such a difficult diagnosis as central / secondary hypothyroidism .
I think you need to be realistic about what this GP will really be able / willing to do for you ~he presumably felt (or was) pressurised to apologise and 'find a way forward' for you , as a result of your public criticism which was reflecting badly on the surgery .
How much benefit will it really be if you are to be given a 'token' trial of levo just to shut you up , or worse ~ a referral to an endo that effectively say's "this referral was made under duress" somewhere in it's intro ?
If you are going to be trialled effectively with levo , you need someone who is genuinely on side with the idea .. who is willing to give it a proper trial .
I'd wait for your own GP to come back off holiday , since she has already seen the previous fT4 that WAS under range , and had already said that if these results were the same she would probably give a trial of levo.
These latest results DO have a critical difference to the last ones ... the fT4 is not under range anymore ... yes , WE all know it's only a smidge of a difference ... but trying to get anyone to consider central /secondary is difficult enough even when T4 is actually under the range... so you will need all the help you can get .... and a lot of patience......... therefore having an earlier appointment with a different GP, who hadn't been involved in the previous history with under rangefT4 , and who was now looking at an fT4 result that was in range , was always going to be difficult ..... even if they weren't under loads of stress.
Getting diagnosed and treated for suspected central /secondary hypo, especially if fT4 keeps annoyingly popping back up 'just into range'.... is a long haul venture and you will need a GP who is genuinely on your side .
You make a lot of very good points, and I will have to give some deep consideration to the points you’ve raised as many hadn’t occurred to me at all. I’m hindsight, yes I wish I had waited. Although when I phoned to speak to her and was told she was unavailable I was automatically told another GP was calling me back, I naively thought they would be as knowledgable and understanding. I’m in a difficult situation, I am on my own with two small children, one 9 months and one 5 years. I keep wondering how I will continue to cope feeling so horrid and I do believe in my haste to just feel better I have made some bad choices. Thanks so much for taking time to reply, it’s appreciated x
it real easy for me to be wise and patient while sitting undisturbed in my conservatory and feeling pretty well over all.
I would have been just as desperate as you when i still had 2 small people to sort out. (my thyroid went wrong after a baby..... she's about to be 24 at the weekend and is taking me out to dinner , and buying it .... yaaay)
So not meant in anyway as criticism ... jut a 'heads up'
Oh what I wouldn’t give for a peaceful evening in the conservatory feeling well! I hope you’re thoroughly enjoying every minute and your daughter sounds lovely, what a nice treat! X
Hormonal upsurges during pregnancy and childbirth ( and at other times eg puberty and menopause and even severe stress) often spark biological changes in the body which may have had something to do with your current feelings of being unwell. Hormones are powerful things and one hormone can spark changes in another. Could your problems have started up after your last child was born? Or become worse?
My levels have gone up ever so slightly (0.2! FT4) since having her, but my cycles are heavier and PMS worse so that’s a very real possibility. Thanks for mentioning it I’ll have a word with the GP about this too x
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Got results, anyway, didn't it. Well done, you!
I’m in need of some help/advice please!
help with results please 
Please help! 
Please need your advice !!!!!HELP!!!!
