Well that was probably my first (and last!) appointment with an Endocrinologist. She thinks that I don't have a thyroid problem, as if I did then my TSH would be very high, which it never has been, and taking Levothyroxine is lowering my TSH unnaturally. Recent blood tests below.
Even though my Free T4 and Free T3 have been low since I had my first test in April, she thinks this could just be normal for me as a certain % of the population just have low levels and it doesn't mean they have a thyroid problem. When I asked specifically about the low Free T3, she said that she never tests for this as it's unreliable as it fluctuates throughout the day and recent research shows that people don't feel better after taking T3.
I said that I initially felt a lot better after starting on 50mg Levothyroxine, with my constipation and brain-fog disappearing after a while. But when I started to feel unwell again at the end of June, I thought I needed a dose increase and started to take 75mg every other day. She said that most people feel better after taking Levo as it's an increase in hormones but after 3-6 months they'll start to feel unwell again as they didn't have a thyroid problem and something else causing the symptoms. In my case she thinks that maybe I'm having some sort of mid-life crisis, that I need to stop taking Levothyroxine (gradually) and to find other ways to help with constipation etc.
We briefly discussed the cortisol saliva and blood tests which also shows low levels. She said they can fluctuate throughout the day and are also unreliable. But as there's a very small chance that I may have a problem with my pituitary gland, she's requesting that I have a short synacthen test, but as other tests show that other hormone levels are OK, it's very unlikely to be the case.
If the GP and Endocrinologist are convinced that I don't have a thyroid problem, then I think I just have to accept that's the case. My GP will now stop my prescription for Levothyroxine so unless I start self-medicating, I'll just have to come off it and see what happens.
It would help to hear from anyone who's been in a similar situation and what happened? Thanks in advance for your help, sorry for the very long message.
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Your antibodies are raised which means that you could have hashimotos. So you will swing from hyper to hypo. So you do have a thyroid problem. I've never found endos helpful. Hence I sacked mine.
Hi SlowDragon , I'm taking the Better You Sprays for Vit D and Vit B12, also a Super B Complex. I've not had an ultrasound scan of my thyroid, the Endocrinologist examined my throat and neck today and said all was fine, so I'd have to get a scan privately now.
She said: ‘taking Levothyroxine is lowering my TSH unnaturally’ - what b*ll*cks, that’s what happens when you take Levo - it’s a perfectly natural TSH response! Was your TSH above the range (or high in it) when you first received treatment - or was treatment it based on low Ts? Either way, TSH will go lower!
She said: she never tests T3 as it’s unreliable and ‘recent research shows people don’t feel better after taking T3.’ What ‘people’? I’d have accepted her saying ‘some people’ - it doesn’t work for everyone - but it does for others. What lies! All these comments show no understanding of T3 and it’s crucial role. If the test is so bloody unreliable, why do they use it when someone is in intensive care - and treat with T3 if the is level low as they know those with low T3 stand less chance of surviving in ICUs? This makes her lies dangerous.
To suggest you are having a ‘mid-life crisis’ (that is, you are mentally unstable, probably bonkers), is so unbelievably insulting it isn’t even funny. How dare she! Is she pretending to be a psychiatrist in her spare time as well as masquerading as an endo?
You need to complain about this charlatan - and the comments made to you. Is she even a thyroid specialist? A lot of endos specialise in diabetes, so have the same simplified (lack of) understanding of the thyroid as most GPs.
One thing is certain. You are not going to feel any better as a result of this shambolic consultation. I’m sorry you have had to go through this. I suggest you hunt for some of the studies referenced on this site to print off and send to your GP. 🤸🏿♀️🥛
Hi MissGrace , thanks for your message! My head is still spinning with trying to digest everything that was said. I was initially given a trial of 50mg Levo as I'd been feeling unwell for a while and had private blood tests that showed TSH 1.92 (range 0.35-4.50), Free T4 11.8 (range 11.0-26.0) and Free T3 2.8 (range 3.9-6.8). The endocrinologist thinks these could just be my normal levels hence taking Levothyroxine is unnecessarily raising my Free T4 and Free T3 at the expense of lowering my TSH when it's not needed.
The endocrinologist talked a lot about not getting too many private tests done as eventually you'll find something wrong with you, and a lot of people find out they have low/high thyroid levels when in fact there's nothing wrong with them in the first place. She said that just because she saw me privately rather than through the NHS, she doesn't feel she can give me any diagnosis, apart from the stop taking Levothyroxine, and to avoid seeing anyone else privately to try and get a diagnosis.
It was a new GP that prescribed the Levothyroxine, and a different GP that gave me the prescription exemption form as they both thought that I needed to take it. Unfortunately, I've not been able to see either of those GP's since then, and my usual GP basically thinks I'm a hypochondriac so would probably agree that I'm having a mid-life crisis! But all I'm trying to do is get to the bottom of why I feel so rubbish and can't do the things that I used to do so easily!
Ignore the hypocondriac stuff-NHS love to start doing this to save doing anything(money),and make patients feel guilty. Patients just wanna stop being ill-don't let her/them make u feel guilty about being ill.
I been on Levothyroxine 15 yrs and when ill,they try any quick diagnosis they can make(normally MH),and offer either anti depressants or sent me to dead end diagnosis mental health team who just wanna give anti psychotics. And if I complain they call me paranoid(cos refuse meds that aren't relevant!),or that I exagerate things.
No such thing as a national health service,more a national disgrace.
I hope my endo appt on Sept 24th won't go this bad!
Just waiting for a TSH/FT3/FT4/Antibodies test to come thru,and considering gene test-as think my mum passed on Hypothyroidism to me I think(she was on more Levothyroxine than me-175mcg!). GP has said Endo already poo pooing my Cortisol saliva test,even tho I gave GP a blood test result aswell. So I also gave GP a slightly out of range FT4(22.1) I had done in May aswell!
All they do is tick boxes,patients feel the symptoms!
I’d demand a second opinion and get the list of sympathetic endos from thyroid uk and make sure you see one of those. I believe you are entitled to get a second opinion on the NHS. The one you saw sounds dire how can you not have a thyroid problem if you have over range antibodies? If that isn’t proof that you have autoimmune thyroiditis then what is? I am amazed that she appears to have ultrasound vision as well - what a waste of money the NHS ultrasound scanning all those people when all you need is her superhuman visual abilities. It is her who is a mental case not you she should not be allowed near anyone in a medical and capacity she spouts 💩
Hi TSH110 , I'm going to see GP this week and request another referral to nearest Endo on the Thyroid UK list. If I can't get another referral and/or Bupa won't pay then I'll just have to sort it myself. I'm also going to insist that if/when they try to stop my Levo prescription, that I should at least have a thyroid scan beforehand and whatever further investigations if they're so sure that it's not a thyroid problem!
Hi Marz , she said there was a slight chance there would be a problem with my pituitary gland, but thought it unlikely as usually other hormones are affected before it reaches your thyroid, and my other hormones seem OK based on other tests. I mentioned central hypothyroidism too and she said the short syncathen test would be the next thing to do.
other hormones are affected before it reaches your thyroid? What does that even mean? The TSH is the only hormone that reaches your thyroid. And it is possible to have TSH specific hypopituitarism.
She said that if the pituitary gland wasn’t working properly, it would usually affect other hormones like FSH, LH, prolactin, growth hormones before it started having an effect on TSH. And as my other hormone levels were normal, then it was unlikely that I had a pituitary problem. I have to admit that I felt a bit blind-sided so was struggling to take everything in!
Well, I don't know if that's true. But, as you've only had your TSH tested, anyway, how would you know? I think that's a pretty stupid thing to say because you have no proof that it did or it didn't. But, I repeat, you can have TSH specific hypopituitarism where only the TSH is affected.
greygoose thanks for the info, I’m going to do some more research on TSH specific hypopituitarism and maybe a new message to ask if anyone has seen a specialist about this. I asked about this a while ago but there was no one even near by, might be a trip to London possibly.
Hi SeasideSusie , unfortunately the nearest endo to me on the Thyroid UK list is a few hours away. I thought I should try someone a bit more local in case I needed to have tests or follow-up appointments, and she was suggested by another person on the forum. I wish I had just made the trip to the other endo, but I'll need to get another GP referral first.
I brought along loads of info, including summary of symptoms, blood test results, background info which she looked at briefly. She said the antibodies didn't mean anything. And as she wasn't convinced there was a thyroid problem she didn't think central hypothyroidism would be an issue either.
I know SeasideSusie , I thought those figures said it all too so I felt totally deflated when she basically said they were normal. She was adamant that a small % of the population will always be below or above the reference range and feel fine (as usually they don't know about it). It's all about where the TSH is, and as mine has never been high, that's her basis for me not having a problem with my thyroid. I suppose I should be glad that at least she's going to give me the syncathen test so will see if there's a problem with the adrenal glands.
I'm scared to stop taking Levothyroxine as it has made me feel a lot better and I don't want to feel terrible again. But half of me is now thinking what if the GP and endocrinologist are right and I don't need it? I've got a GP appointment next week where I can beg for them to keep my prescription and ask for another referral, but maybe I'm better off considering self-medicating now?
In every patient with CH, Computerized Tomography (CT) scan or Magnetic Resonance Imaging (MRI) study of the hypothalamic-pituitary region should be carried out.
Also request cholesterol test. High cholesterol is linked to being hypothyroid
The GP and the endo are not right. That endo knows nothing about thyroid. It isn't TSH that drives hypothyroidism, it's the FT3. The TSH just follows the levels of the FT4/3. And, I think she was just making it up when she said that about the small % of the population, etc. It's more likely that these poor people have been hypo for so long, they don't even know what normal is, so if asked, they'd say they were fine.
A problem with the pituitary and a problem with the adrenals are two different things. The fact that there's no problem with your adrenals doesn't mean there isn't a problem with your pituitary, as I mentioned above. But, what about the hypothalamus in all this? It could be the hypothalamus at fault, not secreting enough TRH to stimulate the pituitary to secrete TSH. Honestly, they know nothing!
SlowDragon thanks very much for this. I will bring all this info to the GP and make the case for having scan and cholesterol tests before stopping my prescription. I’ve also enquired about the cost of having private scan. Really appreciate all the help from the forum!
And even if a small % of the population are okay on low levels of T3/4 and that is normal for them, we’ll probably never know as they will feel well and have no symptoms. You DO have symptoms, you have noticed a deterioration - so this is not normal for you! She’s a n*b! 🤸🏿♀️🥛
I’ve had one - it totally freaked me out, so much so nothing would get me in one again bar total sedation. I would rather die than go in one again even if that sounds crazy to you, it is how I feel. If I think any health problem I have might lead to an MRI I ignore it. I believe I must be highly sensitive to the magnetising process. I got horrible sensations in the area being scanned like hurricanes blowing through my tissues. It was extremely disturbing to me. The random noises were very unsettling and being strapped down when I find keeping still for long periods no longer possible due to rapid muscle fatigue since becoming hypothyroid, added to the stress I felt in there. Once that machine was switched off I felt totally normal again which I thought was odd as I expected the anxiety (I thought I was going to have a heart attack in it and I could not calm myself down despite huge efforts on my part to do so) to persist for some time after I got out. I know it seems irrational, but people used to stare at their hands under xrays (have a look at what Röntgen did to his - it is not a pretty sight...looks like it was Dally not Röntgen although several of Röntgen’s technicians suffered similar hideous X-ray damage to their hands adammunich.com/a-brief-hist... ) believing them to be harmless, perhaps being magnetised to capture the variation in tissues returning to normal polarity as an excellent soft tissue image, may have longer term unexpected consequences, despite being a fantastically clever imaging technique. I think that conversation has already started. No amount of telling me that someone else has had 100 ok ones can alter my highly instinctive repulsion to it. I am not someone else, I am me! I know perfectly well that millions of MRI scans must be performed most probably on a daily basis but it makes not one blind bit of difference - I never want to go in one again. As for paying to do so...my comment was just meant as an amusing observation on what is most likely down to my illogical phobia of MRI scans.
Thank you for this information. What is the name of company/hospital? Have you used them? If so did you really find it helpful in resolving your problem?
There must have been something wrong for your free T3 level to be below range at the time you were initially tested. However. It could be a number of things interfering with thyroid hormone production. Thyroglobulin antibodies are raised at last blood tests but there are a number of conditions that can cause it besides a thyroid condition.
It would be sensible to look back at all the blood tests taken at the time treatment with thyroid hormone was initiated and see if you had any deficiencies, an infection or an illness. We're you taking any other medication that might affect thyroid function or thyroid hormone production?
I do know other people who were wrongly diagnosed and no longer need or take thyroid hormone. It can be a very big adjustment for your body, however. In the long term if you don't need it, you shouldn't take it. Ask the Dr or Endo to explore the reasons for raised Thyroglobulin antibodies. If your thyroid hormone production does not normalise with withdrawal of levothyroxine then you need further tests and investigations. Below range FT3 is odd, I would think it unlikely to be a case of 'normal for you'.
Thanks Nanaedake , when the initial tests were taken I had just been through a period of feeling very unwell (headaches, bad fatigue, brain fog, dizziness, constipation, abdominal pain, sensitivity to light and noise, nearly fainted a few times too) and had a lot of other tests. Nothing too obvious showed up on those tests apart from slightly high ferritin (which is still the case) and an enlarged liver (which seems to be just an anomaly called Riedel's lobe).
After about 6 weeks of taking 50mg Levothyroxine some of my main symptoms cleared up but I still have problems with fatigue, dizziness and low energy levels. So I was hoping that the endo would suggest an increase in Levothyroxine and if so, maybe even a trial of T3. I didn't expect her to say that I don't have a thyroid problem. I asked her and other GPs about the raised thyroglobulin antibodies but they all say it's nothing, only useful for monitoring patients that have had thyroid cancer and don't need to look into it. I don't want to be taking Levothyroxine if I don't need to, but I feel like I've hit the end of the road now with asking the GP to explore anything else.
Your B12 is only just into the sufficient range. Are you taking a good B complex that includes the methylated forms of B? Low energy levels and dizziness might correspond with low B12. Have you had any tests to rule out pernicious anaemia and tests to rule out lupus? Have you got any other raised antibodies and have they been tested? Check back to find out whether ANA antibodies have been checked.
I think your symptoms need further investigation but stay open minded as it may not be a thyroid problem. You won't know until you have all the evidence.
You may be a bit like me. I have arguments with every GP I see as they all have a go at me for taking levothyroxine. My T4 and T3 were always low and I felt terrible but my TSH just wouldn't rise so of course I was always told I didn't have a thyroid problem. I don't have raised antibodies. I finally got help from a thyroid UK approved doctor. Trouble then was as soon as I took levo my TSH nosed dived like yours and I had all sorts of problems. Private doc said had to be my pituitary gland. I've never had it confirmed but I do have to raise my levo very slowly and my TSH eventually bounced back. Like you I didn't want to take levo unless I had to but my T4 and T3 are rising and I feel so much better. I don't think I have a thyroid problem as such as when it gets T4 it works great and I convert well but something is preventing my TSH from rising. I think it was damage to my pituitary function after Lupron injections as they shut down pituitary function. I had headaches from hell when I was put on it and it had to be stopped but NHS won't accept responsibility.
Hi magsyh , it's such a shame that so many of us are in similar situations and feels like going around in circles! I'm so pleased to have found this forum, and have learned a lot from each situation that comes up. I've made contact with the nearest doctor on the Thyroid UK list and maybe get to see them soon. I hope you are feeling better now, thanks for your message!
Its interesting how endocrinologists get hold of the wrong end of the stick and seem basically ignorant of the facts. One wonders where they picked up this nonsense. For any future visits to endocrinologists who may try to talk down FT3, there is a very small variation in FT3 throughout the 24 hours but it only counts for about a 6% change from the average, at the worst. This is nearly in the limit of the accuracy of a FT3 test. Such a small change does not then imply that FT3 is unreliable.
See this paper:
Free Triiodothyronine Has a Distinct Circadian Rhythm That Is Delayed but Parallels Thyrotropin Levels
W. Russell, R. F. Harrison, N. Smith, K. Darzy, S. Shalet, A. P. Weetman, R. J. Ross
The Journal of Clinical Endocrinology & Metabolism, Volume 93, Issue 6, 1 June 2008, Pages 2300–2306, doi.org/10.1210/jc.2007-2674
Thanks diogenes , that's a very interesting article and will be taking it with me to the GP (along with all the other helpful info I've been sent recently!) to insist on another referral and further investigations.
Hi there I think I'm facing the exact same problem I'm waiting for my 4th private blood test for thyroid before I book to see a private endo as my gp insists I haven't got a thyroid problem I'm a hypochondriac and suffer health anxiety!@ plus I'm in perimenopause so they think I'm just s woman of a certain age.
I'm like you my tsh is low my t3 and 4 are either rock bottom or under range and I have high cholestrol. all points to secondary hypothyroidism which is a problem with my pituitary gland and unless they scan it they won't know...but I can't get diagnosed by doctors yet the lovely people on here looked at my results are spotted straight away hypopituarism....they wonder why we self medicate when no medical people believe is..
Hi Peroxideblader , that sounds just like me too, I can imagine my GP's reaction when he sees my name on the appointment list for that day! Good luck with the private endo, would be interested to know how you get on, take care!
I can't attach my readings screen shot but all my levels were lower than yours and they still say YOU HAVE NO THYROID ISSUE OR ANY KIND OF HYPOTHYROIDISM..mine which totally point to central hypo are the following using the same company as you with the same ranges..
tsh 1.02
total t4 70.2
free t4 12.20
free t3 2.96 ( below range)
that's why when i get my latest blood test results soon I'm forcing a diagnose and I've persuades my partner to come for the first time to back me up
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