Sorry for the rant, I just had to get this off my chest.
An update. The Endocrinologist has just phoned, he won’t help me with T3. He said the only blood test result that means anything is TSH. According to him FT3 and FT4 don’t mean anything at all and don’t need to be tested. It is only TSH that matters. FT3 blood test results are only needed for people who are on Liothyronine. I don’t know how thinks people get onto Liothyronine in the first place.
Looks like I am stuck, I can’t afford to go private, it’s impossible. I’ve been used to feeling ill for many years, so I guess it will just carry on the same, not a lot I can do. The most I can save up for is a private blood test but is there really any point if I can’t do anything to change my treatment.
He was just as useless with my sodium levels as well. He told me that he couldn’t make any sense of what the original endocrinologist I saw for low sodium had written and had no idea why I had been put on some of the medication I had been put on. I won’t bore you with all the details on that.
This is now 4 different endocrinologists I have seen just for low sodium, 3 of them were 10 to 15 years ago and then one today. They have all told me something different and all contradict each other. I don’t know how I am supposed to work out which one is right.
Why do all specialists seem to contradict each other and then decide that it is in fact a different department that needs to see you.
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Why do all specialists seem to contradict each other and then decide that it is in fact a different department that needs to see you.
It's called 'passing the buck', and stops them actually having to do any work. They're probably aware that they don't have the answers so pass the problem on to somebody else.
But you're better off without an endo like that! How very ignorant! Diabetes 'specialist', I presume? Doesn't know his T3 from his elbow. Sorry you had to go through that. Not good for your blood pressure!
Funnily enough blood pressure is not something I have problems with, not unless I’m speaking to ignorant doctors anyway, it’s usually on the low side, probably due to my low sodium that no one wants to sort out, although can’t imagine it was low after my phone call today!
This endo told me at the start of the conversation that I’d been tested to see if one of my meds caused the low sodium and it showed that it didn’t, then by the end of the phone call he had decided that it was the meds causing the low sodium. When I asked why he changed his mind he said he couldn’t make sense of what the previous endo had written, who did the test, therefore it couldn’t be right. At this point I just gave up, it was obvious he didn’t have clue.
I have no idea what was tested to show whether my meds was causing it or not but he wasn’t the first Doctor who has said it, so somewhere along the line one of the endos I have seen must have written something in my notes that says it wasn’t caused by the Tegretol I am on.
I get told the test showed it wasn’t the Tegretol, then they tell me it’s the Lansoprazole that causes it, when I point out this is impossible as I wasn’t on Lansoprazole when I was originally diagnosed and only went on it because the meds they gave me for low sodium affected my stomach they decide oh ok it must be the Tegretol then. They just keep contradicting themselves and each other. I feel all the time that none of them can be bothered and they are just trying to fob me off.
I have never been given results, as such, to any tests in the past just told either everything was ok or something was abnormal so prescribed a medication for it.
I get told by the endos that people with low sodium get prescribed sodium tablets and yet none of them will prescribe me sodium tablets.
Very interesting that hypothyroidism can cause low sodium, I didn’t know that.
Hyponatremia is known to occur with carbamazepine. In patients with pre-existing renal conditions associated with low sodium or in patients treated concomitantly with sodium-lowering medicinal products (e.g. diuretics, medicinal products associated with inappropriate ADH secretion), serum sodium levels should be measured prior to initiating carbamazepine therapy. Thereafter, serum sodium levels should be measured after approximately two weeks and then at monthly intervals for the first three months during therapy, or according to clinical need. These risk factors may apply especially to elderly patients. If hyponatraemia is observed, water restriction is an important counter-measurement if clinically indicated.
I think I was originally told back when I was first diagnosed that Tegretol could cause it but then they said they had done tests which showed it wasn’t that. Have no idea what tests were supposed to show that. I had blood tests, 24 hour urine tests and a couple of blood test where I had to lay down for a certain length of time before 1st test, then sit up for same length of time and had a 2nd blood test. It was after all these tests that they decided Tegretol wasn’t causing it.
I had been on Tegretol for approx 10 years I think before I had low sodium.
You're probably right, they are just trying to fob you off because they haven't a clue what's wrong.
Doctors will rarely, if ever, just give you your results. Most of them would prefer that you don't know what they are because that way you can't argue. But if you are in the UK, it is your legal right to have a print-out. Ask at reception. They can't refuse.
I don't think I said low sodium could be caused by hypo, did I? I said low blood pressure is a hypo symptom.
Low blood pressure is one of the principle symptoms. Doctors think that all hypos should have low blood pressure. But, of course, they don't. Some do, some have normal BP and others, like me, have high blood pressure.
There is a third option, sourcing a buying your own T3, obviously not as cheap as getting it on the NHS but considerably cheaper than going private. Plus you can control your own dosage. And arent at the mercy of TSH obsessed numpties.
You could post asking for reputable sources via a private message, in line with forum guidelines. Also check with the admins to see if any issues with the sources have been reported.
pfft I am the same as you, don't think I will ever get well. My GP suggested I see another Endo mainly due to getting another mri scan on the pituitary gland that I had back in 2017 due to a 2mm pituitary microadenoma , was supposed to be redone 6 months later but heard no more and it scared the hell out of me having that scan so I never chased it. My appt came through for next May would you believe so f**k that. If you managed to get your T4 and more specifically your FT3 tested and take the results back to your endo, do you think that might make a difference if it shows you need T3?
So sorry you are having problems as well. I hope you manage to get them sorted out. Next May is a long time for an appointment.
I had my FT4 and FT3 tested back in June 2024 and I told the endo these results. I also pointed out that my FT4 was 87.63% through the range but my FT3 was only 27.03% through the range. He just said FT4 and FT3 doesn’t mean anything, only TSH matters and there was no need to get FT4 or FT3 tested as the results aren’t taken into account. He said my TSH was below the range therefore I was over-medicated even though FT4 and FT3 were both within range.
At this point I gave up, I wasn’t getting anywhere and was just wasting my breath.
Hi its frustrating isn't it I also found Dr's were contradicting each other one dismissing what the other had said its very upsetting as you can't trust anyone advice and wonder if they know anything . I too wonder if I am going to stay like this forever as Dr's aren't knowledgeable its very unfair for patients left unwell hope you get some advice . Xx
Many thanks for your reply. It’s incredibly frustrating when they contradict each other, you never know which one is right. I’m sure a lot of them don’t know enough.
I once asked a GP a question many years ago, can’t remember what the question was but he had no clue and said to me unfortunately we don’t have all the answers. I respected him far more than these doctors who try to fob you off when it’s obvious they haven’t a clue.
I don’t hold out much hope for getting anything sorted out soon but maybe one day I will see someone who knows the answers and can help me, it’s that bit of hope that keeps me going.
I haven’t looked at your back story so apologies but you can ask for a second opinion or to be referred to a different endo - I appreciate this takes a long time. 😞
And I know this is not for everyone but have you considered getting a private blood test and paying via something like PayPal credit? I’ve been where you are unable to afford the private tests etc it was beyond frustrating for me personally.
GPs and a lot of specialists don’t do the correct testing for thyroid now I appreciate I have Graves’ disease so perhaps different but when I asked my gp for T3 to be included in my test I did some research and simply wrote “I’m having symptoms XYZ and in line for NICE guidance I would like the following tests…” it’s also good to state very clearly whenever you are facing blockers “please can you ensure you document clearly on my record why you are refusing a test for XYZ” … this has changed a lot of medics minds because their name will be clearly against that if anything happens 🙂🤞🏼don’t give up xxx
Just reading through these replies to the original OP and interested in yours. I also got diagnosed with Graves back in 2021 and despite my endo requesting regular bloods to be done by my GP surgery (they've never acted on it) I finally got an appointment for yesterday. I noticed on my form it was for TSH only. It was a practice nurse who took them and I won't pretend to understand everything about Graves but have picked up on this forum TSH alone isn't reliable. I did question with the nurse why only TSH and said I understand I'd need the full works, so to speak to get a better picture of how things are. She never challenged & brought up another form on her pc yet when looking through what she could request being tested , T3 wasn't an option for her. I think Graves antibodies was an option, a test relating to parathyroid was there but not much else. Tests for vitamins also seemed to be thin on the ground. B12 and vit d was all she could see. She said maybe the lab tests for other things but really didn't know. Will be interesting to see what comes of the results but think I'm waiting c.10 days for them. I will try your way of asking next time, see what happens then!
With graves you at the very least need T4 as well so that’s poor practice at best - nice guidance state at least T4 and TSH but actually T3 as well although my endo only does T4 and TSH. My husband works for the care quality commission so if I get a bit stompy (I very rarely use it) I tell how much the CQC will enjoy their next unannounced visit 😂
You should be getting regular blood tests with graves depending on where you are in your treatment but at least every three months?! But if they won’t do it or like they did to me recently “your results are spot on” and wasn’t going to tell me what they were I’d just get a private test (if you can afford one) and tell them “it’s fine the results are spot on!” 😂 or quote the NICE guidance at them - has done the trick for me as they know I’ve looked at it - I don’t think my endo likes me 😞😂
Thank you for your reply. I am unmedicated, found I couldn't tolerate Carbimazole, felt very unwell on it. Things did level off by September 2022 but end of last year symptoms flared up. In no man's land at the moment. Had to go private to get the original diagnosis, that endo is now completely inundated. Thought nothing lose by going on NHS waiting list though I've had 2 text messages since referral in Feb asking did I really need to see someone. Also slightly worrying is when I was fighting to get the blood test appointment I had yesterday (and it was a fight!) whoever I spoke to must have been looking at someone else' records as they said "As you're on levo, you only need an annual blood test". I'm not and never have been on it. Somewhat concerning!
Yeah that doesn’t sound great although my step-daughter also had to wait a year and got the same text messages throughout although she appears to have naturally gone in to remission which is a massive relief
I did in fact have a blood test for TSH and FT4 and FT3 back in June this year. This showed that I don’t convert T4 to T3 very well. I mentioned this to the endo but he was adamant that it is only TSH that matters and not FT4 or FT3, he said there is no need to test those because they mean nothing. My TSH was below range even though my FT4 and FT3 were in range. FT3 was only 27.03% through the range. He said because my TSH was below range I was over-medicated and needed a reduction in Levothyroxine which my GP had already done at the time.
So far I never never seen the same endo twice, so I am just hoping that I see a different one at my next appointment, whenever that may be, and they have different ideas.
Loads of people on here who battle to get them to look at anything other than TSH with hypothyroidism- keep trying though and keep us updated as there is a lot of good advice on here - it’s hard but keep trying x
I think they have a different take on hyper vs hypo patients and the testing etc is different too. I hope you settle ok on PTU - selenium is good for the eyes which can get affected by thyroid disease x
I have had a couple of cortisol tests, the last one being approx 10 years ago, I think and they were both fine.
I did originally have a range of different blood and urine tests, including one where I had to lay down for a while then have a blood test then sit up for the same length of time and have another blood test.
One of these tests not sure which one showed my aldosterone was low or slightly low, can’t remember which but my cortisol was fine. Whichever endo I saw after that test said this was unusual it was usually the other way around. The endo I saw yesterday has decided this can’t be right because my potassium is fine therefore my aldosterone can’t be low.
My main symptom I have noticed I get when I know my sodium is dropping lower, is I get very light headed, which is constant. I have discovered if I have a couple of dioralyte (an electrolyte drink) spread over the day, the light headedness improves. I have had blood tests done while I have been light headed which showed my sodium had dropped.
I am sorry you had such an awful time with the endocrinologist. I am really appalled how some physicians treat their patients and how dismissive they are, especially to people suffering from chronic conditions.
With regards to the low sodium, I just quickly consulted with Dr Google and it immediately spits out that low sodium can be associated with Addison'd disease and... wait for it..... HYPOTHYROIDISM. Duh. Don't even need an endo to put 2 and 2 together, go figure! It is actually mind boggling that they can skirt round the issue of not adequately treating patients and either just saying they cannot find the cause of a hypo related factor that is abnormal (such as BP, sodium, cholesterol, you name it!), or just treat you for something that is NOT the root cause (statins, heart & BP medication, antidepressants etc.).
I know that you are a poor converter of T4 and this may be a long shot, as your finances are stretched, but could you perhaps do a genetic test for the DIO2 polymorphism? If that test is positive and you have a genetic defect so you cannot adequately convert T4 into T3, you could perhaps force the hand of the endocrinologist? Just a thought. I have included a link to Thyroid UK for some info:
I am furious for you! This man is dangerous, and putting you and others in danger. He earns good money for his ignorance. I would write a letter (this way they cannot ignore it!) to the head of the hospital board. Include the following info -
Ask them why their Endo is going against all the research by not testing the circulating hormones, and his lack of knowledge is making you and others ill.
We need to get rid of Endos like this for all our safety. Sending a hug and power to your elbow!
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