Yesterday I went for my 2nd Nhs endo appointment and saw the same registrar as last time, not the consultant I thought I might see. I had taken T3 privately for a few months but was advised to stop in April due to continuing ectopic heartbeats. As expected, because I had no results from a cardiologist except the private one stating it was ok to restart T3, he said I'd have to wait for another couple of months for a decision on my treatment. I've got an echocardiogram in 3 days and appointment at last in 4 days on the NHS, been waiting since 1st April hence the private one to try and speed things up. I understand that it's sensible to await confirmation that my heart is structurally sound before restarting it but I stupidly expected a bit of reassurance as I feel very unwell a lot of the time. I have posted my blood results here a few weeks ago and my T3 is just .1 above the range. I went armed with these results plus a list of points to discuss and how I felt. He said he understood but couldn't explain why my T3 and Tsh, also just in range were so low. I lost it and just sat there crying like a fool trying to explain how poorly I feel. I asked if he could treat my symptoms not my numbers.
He did say he would discuss me with the consultant but her response would be the same, so off I went to have a blood test next door. Afterwards, still snivelling I saw him leaving and asked if he had spoken to the consultant, he said she was still with a patient, I said I'll wait then so he went back and surprisingly called me in. No patient in there!
I asked about my low T3 and she said it's not worth looking at as it's only a snapshot, she only looks at tsh as these numbers don't lie. I asked why I had poor conversion, she said she didn't believe in that either. She did say if the cardiologist say I'm ok she will let me trial T3 again but I was unwell last time. I said I felt better on it but it was stopped because of my ectopics, not a fast heartbeat. I embarrassed myself and cried again. I'm really not a drama queen normally but I lost it, maybe frustration or disappointment. How are we supposed to get well again if we're up against this, especially from a thyroid specialist? I'm fast losing confidence in any medical person, or is it just me?
Rant over, I think if all ok cardiac wise I'll just restart T3, I want to live not exist. Thank you for reading, writing it down has helped x
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Baggiesfan
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I’m sorry you had such a bad time… I have cried so many tears in so many doctor’s offices, they are hideous places to be. The fact the consultant said your conversion isn’t relevant shows that you are not in good hands. It’s just ridiculous. And I wanted to add that I have ectopic beats (both on T4 only and with T3 in treatment) and an mri showed a structurally normal heart. It’s part of dysautonomia for me, which is likely tied with adrenal fatigue caused by prolonged ketosis.
Thank you, I'm sorry you have ectopic beats too, does nothing settle them with you either? I was really upset when she po pooed my suggestion that I'm not converting well, it looks obvious even to me but she just went on saying there was no problem before, so it's not my pituitary or anything else and I look as if I am over treated. I did say I've been hyper with graves and it was nothing like this at all. I remember it well with tachycardia, eating like a horse but weightloss, tremors and whizzing round. I can assure you I'm non of these now at all. I did a private saliva cortisol check last year and all was ok, I sort of hoped it might be that so I could sort it.
I recently discovered that my heart rate responses best to lifestyle - rising with the sun and going to bed with the sun, less screen time, eating very cleanly and balanced etc. i don’t really understand exactly why, but it seems to set off the beats the most if I am eating badly/ sleeping badly etc.
i definitely think you need to get a new doctor from the list approved by this forum, your endo sounds totally useless/dangerous not to think conversion is even relevant!!
Baggiesfan - I just wanted to send you a hug! I am sure everything you have said will resonate with others on this forum. It certainly isn't a good time to feel unwell at the moment with so many hospital waiting lists and NHS endo's who really don't know enough - I did try to go private but almost got shouted at for not being under an endocrinologist before (I was sorely tempted to say that's probably why I've kept so well for many years but of course didn't.) I couldn't really afford his eye-watering fees anyway and I certainly wasn't going to pay someone to make me more stressed than I already feel - I have more faith in the people on this forum who genuinely care because they are either going through a bad time or have already been there and are now trying to help others - they deserve medals!
Thank you Delgor, hug gratefully accepted. I have been private too, he was ok but the fees every 6 weeks were just too much hence I asked for the nhs referral. The nhs consultant is in another county, 50 miles away, but is well known in thyroid research, gives lectures, contributes to nice guidelines and does, albeit grudgingly prescribe T3. It was her arrogant "I am the consultant" manner which really broke me. I left wondering if she is after all right and all on this forum were just a few with strange alternative ways. I really don't believe that but even my daughter thinks I should listen to her. I so desperately hope she never follows me down this road and if she does, appreciates all who have walked it before and our struggles.Thank you again for your support x
She sounds simply awful - TSH doesn’t lie but T3 does what sort of nonsense is that according metrics personalities instead of taking the time to understand what they really mean in the round. Isn’t that what we pay her to do?
I dont know what to say - whether to try and see someone else or just angle for the T3 and kowtow to get it. I had horrible heart pains on levo ( there were problems with one chamber dismissed as menopausal and of no consequence - to him maybe but not me, it was of considerable consequence !) but they disappeared once I took NDT, but I don’t know how serious extra heart beats are or why they happen. The effect on the heart of thyroid hormones is very complex I think diogenes or helvella linked to a very technical paper about it recently. I’ll post a link to it if I can find it.
Maybe the cardiology people are the ones on the ball about it and you can follow their lead if the consultant seems happy to do so as well. I had those wretched heart pains for decades so I did survive them but it wasn’t nice at the time.
I hope you get some reassurance/decent help with it.
Thank you, at the moment I'm waiting a little longer as she did say she might let me trial T3 again, how kind of her. I know the extra beats are harmless but they make me feel dreadful and impact on my life a lot, but I'm probably having to learn to live with them as many others do unfortunately. I went with copies of research but neither were in the slightest interested, so annoying as the consultant helped to write the current NICE guidelines apparently. Her eyebrows arched when I mentioned the dose of levothyroxine per kilo ratio, I am underdosed a little for my weight but she then got her phone out to use the calculator to check saying they're guidelines and everyone is different. I was trying to tell her that!All these research papers are good for us to read but it's so frustrating when nobody professional cares to read them.
If I've understood you correctly here Baggiesfan, then the consultant contradicted herself?????? which part of what she says are you meant to take as "advice"?
God only knows, I'm losing the will to live. The registrar tried to tell me how dangerous T3 is to the heart, well I feel my heart needs a bit. Seriously, I'll await echo and cardiology then ask them to send results to both her and me. Depending on time for her review and if all ok I might self medicate as I can't be waiting till at least January as she said for another appointment. She added that she's busy and often take 2 weeks to get round to reading letters!
I can't "like" nor "love" your answer here.... what on earth does this consultant mean by it takes her "2 weeks to get round to reading letters"?
She does realise she has the lives of people in her hands? What happens if there's something that needs urgent attention?
Unbelievable! Perhaps she has an assistant to filter what she needs to read? if not, it sounds to me that this is something she urgently needs to address..
I agree, she does have a problem and really shouldn't be proud of the fact she has patients waiting on her response. In fairness I do speak to another lady on here who sees this consultant, she said she has replied to an urgent email from her. Trouble is not everyone knows this so god help them and I wouldn't have known otherwise.
My endo’s sec was really good and more than ready to do battle with the awful GP wanting to reduce my Levo from 125 to 75 mcg on one go. I called her in consternation for help. She said words to the effect that we didn’t spend all that time getting you to the right dose to have it all undone, tell her we have advised she refers you back to us - she was really on the ball. The GP backed down immediately when I told her that. Think of the stuff they must relay back and forth, a good one will know a lot more than you might think. A relative was a medical secretary and she took great interest in all aspects of it.
Mind you, if the Endo is not up to much their secretary is unlikely to be any better
Thank you. That's really good and reassuring to know.
Please understand my comment was not an attack on medical secretaries, nor secretaries in general.
It comes down to the individual, doesn't it? As in everything else, an individual can care and provide a good service, yet another individual may not do either..
My wariness is based on experience with my husband. He received a letter from his cancer consultant, telling him all was well, his check op was clear, and we celebrated and let go of any concerns as to what we would hear at our meeting with the consultant the following day. We told family and friends the wonderful news.
We went to the meeting fully relaxed. We knew the news was good,
We sat down and waited for him to confirm all was well.
He apologised.
We had been sent the wrong letter.
My husband did in fact have cancer, worse still it was very aggressive, he needed chemotherapy, followed by major surgery.
Oh I'm so sorry 1tuppence, lifes cruel at times. Please accept my condolences. My first husband died age 55 in 2007, the year I was diagnosed hyper, I'm sure this triggered it. Sending big hugs x
You are one of the kind souls, Baggiesfan... you have time to think of others despite what happened to so upset you. Thank you .....and count yourself hugged back.
OMG how terrible - unbelievable such an error could have occurred it’s unforgivable l. I can’t even begin to imagine how devastating it must have been. Small wonder you feel as you do. I am so sorry about your husband - heartbreaking. My brother died of it at 36 I got a call to say he had a week to live it was like my world collapsed he survived three months with palliative chemo but it was hopeless. His son is older than him now. It’s very dreadful what happened in your case. These things are almost unbearable as it is.
Thanks for your kind words. Time has helped to accept it better but the deep sadness of it never goes away. I try to take the view I was lucky to have such a great brother whom I loved dearly and I agree that love has never diminished.
I lived in Africa for a short while with a tribe that believed god made us all immortal, but as is our way, people upset god by disrespecting him, he was so annoyed he punished people by making them mortal and that’s when human suffering began.
It’s an interesting way of thinking about the enormity of it.
Isn't it sad that a system meant to be there to support and help ill people get better reduces some to tears because of the mounting frustration and anxiousness on relying on someone somewhere who then appears not to understands or say anything of any consequence.
She doesn't believe in blood tests- they are just a snap shot in time - isn't a TSH found through a blood test ?
She doesn't believe in poor conversion of T4 into T3 ?
What does she believe in ?
Well - someone needs to be working on the guidelines and furthering their career as the guidelines we currently have, we know, are not fit for purpose !
There is nothing wrong in crying, we all do it and it's better out than in :
What chance do any of us have up against this brick wall of ignorance.
Thanks Pennyannie, I appreciate your comments, I was annoyed with myself for crying but it was a mixture of self pity and frustration. I really don't know how any of us are supposed to reach our potential best with these sort of so called professionals supposed to be guiding us. As I've said in another reply, the consultant is a professor in the thyroid field and worked on the current NICE guidelines so there's really no hope at all is there? I can see myself self medicating soon as I can't put up with feeling rough like this for the rest of my life.
Hi BaggiesfanI also had a horrible nhs endo appointment. He was horrible and kept telling me all my symptoms were because I was hyper! He grudgingly prescribed t3 but only because I was already taking it prescribed privately and I had pushed nhs to prescribe. He actually told me how many thousands of prescriptions are written for levo and only so many hundreds for t3. I told him he had another one for t3 to add to his tally! I took my husband with me and after the Dr announced my weight to the room after I had said I didn't want it shared He told me that I might only want t3 for a few years and then stop taking it when I was 50!!! Not sure what magic happens then. I have a few years to wait! After my appointment my husband also went down the "he must be right" route! I wanted to punch the Dr so my husband was lucky I didn't take it out on him! Anyway, I really only wanted to say that you have lived in your body all your life and you know when something is wrong. Don't let people gaslight you into believing otherwise. Stand your ground and fight for your health. You deserve it!
I don't know Sarah Jane but that's a great word for my consultation. I feel I'm getting nowhere and I'm sick and tired of fighting these last few years. Mustn't give in otherwise they'll win which won't help others at all will it but she definitely tried and succeeded at the time to make me feel cranky for going on about T3.
Thank you, nobody understands unless they been through this do they? I certainly was unaware for the first 10 years post RAI, just took my levo and away I went. Unfortunately it's bit me on my bum now and got me big style. No idea what happens when you're 50, I'm 66 next month and can't remember a miracle happening then lol. I went alone to my appointment, my daughter couldn't or wouldn't come and I split with hubby 12 months ago, partly because of my poor health I think but heho he seemed to forget the in sickness and health bit of our vows. That's a good description Gaslighting, I will try to keep fighting but have to admit it's getting harder x
I know it's hard. It takes energy and persistence and fortunately for endocrinologist most of us hypos lack in both. I swear it's the brain fog, lack of energy and drive and everything else that prevents more people from getting well. Not as they suggest that most people do fine on levo alone!! I hung around the edges of the forum for months looking but I just wasn't able to think through what I needed to do with vitamins and doses etc It was far too hard and I just couldn't do it! However, I, like you thought I am sick and tired of being sick and tired and went private. The t3 gave me back a life. I'm still not there with doses but I'm a heck of a lot better than I was. People on here will help you with your fight. You're not alone! I'm sorry about your husband. I can see how easily these things can happen. I thank my lucky stars I still have a husband and a job. I went slightly crazy before I was diagnosed. Anyway...I will leave you with a good Scottish saying. "What's for ye winna go by ye!" There's a better life waiting for you!!!
Thank you, definitely don't cope like I used to. I too have struggled to understand what vitamins etc to take, vit D certainly made a huge difference plus I rarely take pantoprazole now, apple cider vinegar if I get heartburn etc settles it on the whole. When I was blubbing at the hospital I said to the registrar this is not me, I couldn't even work out how to get out let alone speaking in sensible sentences! Crazy from a retired nurse who used to run the A&E department then was a nurse prescriber in a gp practice. No wonder hubby said I was losing it and going crazy again really. I will probably go back private even though it's against all I've worked for but it's probably the quickest way to heal and that's really all that matters. Love the saying x
Thing is, you are undermedicated. Once you get your medication sorted...and all the vits necessary in optimum state...you will...really, you will, find yourself again. You're under the "Hypo Fog" and it's thick and dense...and seeing clearly is not easy under there...nor is thinking... and nor is understanding what is advised. And, it is a big AND, you need the help of an understanding endo...not one who is lost in their own TSH/T4 fog.
I know. Its really hard. Maybe going private till you have your health under control then fight your corner with nhs?? It's terrible really. The medics only see whats they want and I'm sure my doctor saw a gullible menopausal female who had been reading stuff she didn't understand on the internet and listening to other silly menopausal women!! You will get there. Knowledge is power. Read a little bit at a time and it does sink in. Take care and be kind to yourself.
I was private initially till the ectopics increased then he said I'd have to stop till I was given the all clear, which I fully understand. Because of costs I pushed my gp to refer me out of county to this professor on the NHS in Birmingham hoping to get T3 on script from my gp. I still might but I never in a million years expected to experience what happened at the appointment. Still I'll await cardiology which hopefully will be fine then push on from there. Yes, I'm always reading and I thought I was getting it but she suggested as you said about gullible females on the internet who know nothing. Silly woman, bet she'd change track if it was her struggling x
Yes, I reckon you're right. I think a lot of Dr's would approach things differently if they had this! Here's hoping that the recent research filters through then maybe they might change their ideas!
Re: 'silly women' - 40 years on I'm still fuming at the consultant neurologist who contemptuously told me that I read too many wimmin's magazines when I'd been referred to him for a numb foot that developed through pregnancy. 'Nothing wrong with you!' (I won't mention the next part, it could be very triggering.)
12years later, it was only incidentally when I'd had to have an A&E spinal xray for a bad fall on slippery ground that the chief radiologist pointed out that I have a spina bifida occulta at lumber 3, 4 or 5 (can't remember now). I have no spinal bone there, just a few inches of unprotected spinal cord facing the front of my abdomen. It exactly explained the numb foot as the radiologist said the pressure of a large baby would have impacted my open spinal cord.
I have never made a practice of reading women's magazines (and make sure that I only consort with the smartest women online!)
After a lifetime of this sort of utterly appalling, degrading, demeaning treatment by mostly male misogynist doctors, my contempt for them exceeds theirs for women by several million %. It really is no wonder that we women bear a greater disease burden in later life - probably from all the medical dismissiveness and negligence we experienced as younger women.
I know. I honestly would not have believed how appallingly people can be treated by medics who take an oath to do no harm had I not developed my thyroid problem and encountered it myself. The constant references to menopause or perimenopause get waring after 3 years. I even got told when I was 43 that "you are nearly 45 now.....you might just have to learn to live with it" This was after I told him my body felt like it was dying and I was sleeping 18 hours a day. I was offered antidepressants which I refused saying I was wasn't depressed I was ill! This consult led me to try and find solutions myself. I found this forum and requested my bloods. For a year that man kept my tsh .01 below the upper limit! My t4 barely in range. I'm so glad I found this forum. Although it took another 8 months at least to get to grips with the reading etc. I'm so grateful to everyone on here. Particularly the administrators!
I agree BiscuitBaby, our treatment is appalling much of the time. I'm often asked 'do you think you may be depressed?' The gp this week I saw asked again when I told him I felt dreadful till I told him about everything I try to do, he had to agree I'm not! What did you do, apart from lots of reading here, to get better?
Adding in the vitamins definitely helped. I was genuinely surprised how low they were when I tested. I am still trying to get Ferritin up but just can't seem to achieve it. Adding in t3 was a game changer for me. I did this privately at first. I even found initially that my t4 went up a bit when I first started it. I still feel the dosing needs some tweaking but as you can imagine negotiating this with Dr's is hard. I do worry about suppressed tsh but mine went really low by the time I was on 125 and I still had quite bad symptoms on this dose. I started splitting my t4 as well and I think that raised tsh a tiny bit! I made a complaint to my health board as I found out that nhs scotland has a nationwide t3 prescribing policy and found a letter online which had gone out to health boards to that effect. I was given an appointment with nhs endo 2 weeks later! I literally couldn't have done that without the t3. My brain just couldn't have done it. Also, you have been getting palpitations??? I found mine only went away after taking 15mcg t3. I have gone back to 10 for 3 months but they are back!
So sorry your palpitations have returned, it's so difficult to get the balance right isn't it? Did you get any response from your complaint or the usual whitewash reply? I get ectopic heartbeats, not fast, though I know it's still called palpitations. Just found my blood test results from yesterday. All ok and in range 😊 D3 up to 97.8, B12 527 but folate lower range 4.6, cholesterol a bit high 5.7, ferritin not checked. Surprise surprise tsh 0.33. I really don't understand why it's low on T4 only. I haven't tried splitting T4 dose but really can't imagine it making much difference but I guess I won't know till I try.
It is very difficult to get the balance right. I initially complained when I found out what nhs scotland policy on t3 was (should be offered a trial of t3 for those who experience on going symptoms on t4 alone). My then (much better) gp had tried referring to endocrinology twice but had been knocked back twice. The private endo wanted gp to prescribe t3 and wrote to them. The gp did write the script but the surgery pharmacist put their foot down and stopped it. I then wrote to my health board asking how they fulfil their policy if referrals are knocked back. Once I had a response gp referred and I had an appointment within 4 weeks! Amazing what happens when you know your rights and have the courage to stand up fir yourself. The policy was made following an msp (can't remember her name for the life of me) and I think our diogenes I'll stand corrected if I'm wrong, took their case and their evidence to the Scottish Parliament. Well done them!!! I still have lingering symptoms but I'm hoping to negotiate with gp once they take over prescribing. The palpitations are horrible but nothing compared to what they were. I live in hope of achieving symptom free but I'm losing the will to keep chasing it. Nit sure it's possible!!!
Dear oh dear....what a horrible experience, it truly is horrible and you do feel like you're at death's door. Why would the man keep your tsh so high? Does he not know how the numbering system works?? Did he get T4 and tsh mixed up?? I've heard of much worse.....
Yet again it's the wimmin thing...like you I know when it's my body and when it's an emotional thing.
They shouldn’t have to go through it to be able to treat it effectively. I agree they can’t know how dreadful it is from an direct experience side of things but having some empathy would help! They need to listen properly in the first place and this apparatus of patronising control needs completely dismantling so that we can get decent treatment without stupid strings attached that only they can pull if they feel like it. Puppet on a darn string - how did it get to this?
I’m afraid nothing has lived up to being 35 but I’d be a living wreck if I’d continued at that pace! Not sustainable as they say 🤣🤣🤣
50 was getting blippy with thyroid trouble gathering steam and boiling over at 52. Some erratic simmering on low heat for a couple of years but by 60 everything was pretty good. It has been downhill from there - my running times have plummeted!
I'm sorry to hear that tsh110. I reckon I should get you to accompany me to my next endo appointment so you can educate my ill informed Dr of the truth of 50+
hugs to you, what a right royal farce. Wishing you well. Glad you shared this it helps us all. Hope Cardiacs tests all go swimmingly and you can be reassured. Don’t underestimate the stress and resulting exhaustion dealing with this will have dealt you. Take good care 🤗 💚🦋
Thank you, just back from doctors, said I looked stressed, wondering if I was depressed, no I'm not just fed up of feeling unwell and not me. What a surprise my bp has gone up too, always had low bp, was high at hospital too and she said again it's because I'm over medicated. Yes hopefully cardiologist will give me all clear, I think I'm ok in that department fingers crossed.
Oh Baggiesfan. I feel for you. So sorry you've had to deal with this.....as others have said, medics have it in their power to be helpful and kind, even simply be kind and treat us as fellow human beings. Why some seem to forget this, I really don't know.
I join in the gentle hugs to you.... and also the wishes for you to get the treatment you need. x
I'm just looking forward to these guidelines this endo is working on :
It can't take long to write these as it seems physical symptoms will be ignored as usual, so no change there, and that Free T3 and Free T4 will be of no relevance and will save the NHS money again, as we will not need to run these anymore - not that they do in primary care anyway.
So, all we need is a TSH reading and maybe a glass ball ( doubt it will be crystal ) and a cloth ?
The TSH was originally introduced as a diagnostic tool to help identify and confirm a person suffering with hypothyroidism and was never intended to be used once the person became a patient diagnosed with hypothyroidism.
When taking any form of thyroid hormone replacement Free T3 is the most important result to track along with the T4 and with the TSH being the least important of the 3 results.
On this forum we know this, due to the good advice we receive, we are so very lucky.....the pity of it is that it seems to be such a difficult thing to take on board for endos and other medics.
I'm really really grateful the endo I saw last week was much more interested in my symptoms and family history. He didn't mention my suppressed TSH at all....and it's been just the same for years.
it really knocks our confidence when we end up involuntarily spilling our guts all over the consulting room floor .. i've been there with my GP so i can empathise with how battered you feel now.
But ... take a few days to get over how it feels to have 'lost it' .. and then remind yourself : ~Those in charge of the keys to the cupboard don't know for sure what is correct here any more than you do . They are just hanging on desperately to what the think they know and being very arrogant about it ~
Try not to take the delaying tactics and gaslighting personally .. they are just trying everything they can to keep most people out of their precious and expensive cupboard . like an insurance company automatically refusing the first three attempts at a claim, knowing most claimants will give up and go away.
Gaslighting people into doubting their own intelligence , research and personal experience , is just one (very successful ) method of achieving this ... don't let it work on you .
All you want is the opportunity to try something that may help, and that they can prescribe, in an affordable manner. It's a perfectly reasonable and logical. request, Their 'evidence' that there is any harm from trying T3 is 'shonky' (at best) or non existent and biased .... and that's all there is to it .
Hold your head high and carry on. Your daughter would most likely agree with your thoughts if she ever found herself in the same position , but as you say, fortunately she's not. So you'll have to just accept that like a lot of people , she means well and is trying to look out for you ~ but can't see the whole picture .
Well done for saying '" i'll wait then "... made me smile, but probably made his heart rate go up .. as no doubt he's terrified of her .
I agree with the others and to stand your ground and you know your body. I have also been having the same as you and had an Echocardiogram in 2020, which showed no problems with my heart. I decided to take matters into my own hands after great advice and help on here. I had the DIO2 test, which showed I was Homozygous, and means I have a faulty gene off each parent. During the wait for my results for the DIO2 test, and after yet another heart episode, and really bad neck swelling, I was told by the Senior Consultant who saw me and was in charge of the A and E department that he didn't believe in gene testing. His colleague that saw me on the ward later said that I should carry on trying to get T3 after I told her as well. I did get a trial of T3 from a private Endocrinologist and now get T3 prescribed by an NHS Endocrinologist, who is helping me to take T3 only. Yes she has tried to scare me and put me off doing it, telling me I can become unstable with my thyroid. Yes I have had the lectures about bone health and heart problems. She couldn't really argue when my Echocardiogram had come back as ok. I have found that every time I have reduced my Levothyroxine and increased my T3, with the Endocrinologists help, my heart episodes have reduced to lasting an hour, then to half an hour, then 15 minutes, to just an occasional very short one. I told my Endocrinologist that it can't just be a coincidence that my heart episodes have improved since being on T3. I also told her I have an ECG watch that takes a reading for me and links to my tablet, and although my heart reading is high during an episode, it always says everything is ok. I also told her that I monitor my heart rate regularly and that it is always ok. This has reassured her and I am allowed to carry on coming off my Levothyroxine and she also isn't obsessed with low TSH. I also told her that being made to take Levothyroxine for 14 years that hasn't been converting into T3 also gives you very bad heart episodes too. Like Shaws on here I am hoping that my heart episodes will go once I am off Levothyroxine completely, which will be in 6 weeks time. It has taken me a year to do it, in between waiting for Endocrinologist appointments and full thyroid blood tests, reducing my Levothyroxine by 25mcg each time, and increasing my T3, and I was on 150mcg of Levothyroxine to start with. The stories on here about some Endocrinologists make my blood boil, and I know I am one of the lucky ones to have found a good NHS Endocrinologist first time. I have been given the confidence and help on here by everyone to speak up and counter argue back with every rubbish untrue statement an Endocrinologist has spouted at me. I feel so much better now, and I never want to go back to that place of being stuck in A and E with Consultants who don't know anything about thyroid, and tried gaslighting me. I really hope your heart tests are ok and you can continue getting your T3
How wonderful you're on the right road now and thank you for your kind support. I've got the little Kardio monitor which works with my phone. It always shows sinus rhythm with multiple pvc's. I might take the D102 test, just for my own records as I know the NHS endo doesn't believe in it either. I really tried to tell the endo registrar about research especially when he said T3 will cause heart problems but they wouldn't listen at all, hence I lost it and cried. I can't for the life of me imagine this endo supporting T3 only but I might be wrong. At the moment I can't imagine feeling well again but hopefully one day I will x
Thanks and getting the DIO2 test done was definitely the best thing I ever did. I have just got my Daughter to do it as well because she is also having problems with a very unhelpful Endocrinologist. That will be my next battle telling her what to say as she lives in a different area to me
I think I'll get the test too now, a little bit more information as to why things happen must surely help. All the best with your daughter but she's lucky to have your experience and support to draw on. I think my daughter is borderline hypo, she said the gp told her that her bloods were ok but doesn't know the numbers and despite trying I can't persuade her to ask for them. X
Thank you and I agree wholeheartedly but they just wouldn't listen let alone give my points some thoughts. I'm really beginning to think yes, despite her degrees and Professor title she really is a Wally in disguise as an endocrinologist.
You have a private cardiologist who said it was OK to restart T3 but the Endo wants you to see a NHS Cardiologist before he will prescribe T3 …. Im flabbergasted by this type of garbage healthcare (same here in US) whats the difference who pays for the cardiologist as long as he/she is medically qualified…. The issue as I see it is he doesn’t want to prescribe T3 and he knows the NHS Endo will back him up …. Crazy and I feel horrible for you.
Thank you, I give up too but I do understand that she wants the results of echocardiogram to ensure my heart is structurally sound first. My biggest gripe was their attitude towards me, that I was one of the crazy ones who had some T3 knowledge and had the audacity to challenge them on their pedestals. Thankfully I feel supported here and respect the knowledge of the community, wouldn't hurt them to have a read too, might learn something and how many of us are struggling due to their bad practices.
Just to add, I had heartbeats all over the place when my T3 was low. I have not had one beat out of place since taking NDT which gives me all the T3 I need. When you think about it, T3 is the only thyroid hormone your heart is actually getting, so there must be a direct correlation.
A bad endo is like someone driving a car that stops going because there is no petrol in it, and then blames the car. And then feels the need to belittle the car...
Sending a hug and hope the echocardiogram goes well.
Thank you, hug appreciated, I really believe my ectopics will improve with T3, they played up last time I took it but I was having marital problems and my friend had died so I think anxiety and stress was a big trigger too. So glad you're feeling better, I certainly need some fuel in my car it's definitely on empty x
I had many, many bouts of tachycardia - fast heart rate - when my iron and ferritin were extremely low. I started testing and treating this myself in the end, and it took me nearly two years to get ferritin to mid-range (iron was still low). But at some point during that time my tachycardia became much less severe, and much less frequent (although it has never disappeared entirely). It turns out (surprise, surprise) that iron and ferritin are very important to heart health. Doctors had/have never mentioned it to me and I found out only through reading about iron on the internet. But even there it wasn't treated as being very important.
Another iron related issue - after I raised my iron and ferritin I found that I could tolerate thyroid hormones much better than when it was low.
I'm sure that having low levels of many nutrients will be very bad for the heart.
I also know that having high sugar levels will increase my risk of tachycardia. So if I go nuts on the ice cream and chocolate I usually end up with a bout of tachycardia.
Thank you, I get extra beats and they feel like thuds in my chest/throat and my pulse is generally slow. My ferritin has been raised for over a year now, I've been checked for haemachromatosis but ok. I haven't done an iron panel recently but it was ok when the gp checked then. I can't get ferritin down, I know it's inflammation but who knows where I've lots of aches and pains. Apparently it's ok for 'older' women to have a raised ferritin, what's the point of a range if this is the case. I give up, I go from one moan to another 😊 at least you are aware what triggers your tachycardia, why are all nice things bad for us x
Apparently it's ok for 'older' women to have a raised ferritin, what's the point of a range if this is the case.
I assume "older" women in doctor-speak means post-menopausal women. Once we are post-menopausal we are treated much more like men with respect to iron. Since we no longer lose blood every month it is assumed that post-menopausal women can no longer be anaemic or low in iron and/or ferritin, which is utterly stupid - of course they can.
When I had below-range serum iron and low in range ferritin I was post-menopausal and had been for years.
With Anaemia of Chronic Disease you could have high ferritin and low iron. If your ferritin has risen only recently, e.g. in the last year, then something has happened to cause that. I do realise that finding inflammation and infection can be very difficult for the patient, and doctors appear not to care. Is you vitamin D level okay? What about B12 and folate?
I raised my ferritin to mid-range with supplements but my serum iron has always been, at best, low in range. I continued taking iron for another five years at a maintenance dose, to keep my ferritin at mid-range. Then, after treating my iron for two years to raise it, then another five years to maintain it my ferritin suddenly shot up to top of range for no reason. I stopped taking iron then and have not had a reason to take it again. My iron and haemoglobin have never gone over mid-range, and they spent years being low in range.
So, my point is that doing a full iron panel could be helpful.
Thank you, yes I think I will order a test as usually I only get hb done. My last vit d was 87.3 in July and I take 2,000iu daily so in range but not brilliant, hb was 140, again ok. Didn't realise you can have raised ferritin and low iron. Where's best/cheapest to get iron done please? Sorry, I can look that up, thanks for your reply x
Thank you, I thought not to supplement iron if ferritin high as I've always understood ferritin to be our iron stores, that's why I never knew we could have raised ferritin and low iron. X
Hello Baggiesfan - It's not just you! Please don't ever apologise for speaking about your horrid experiences. I think it's so important that we share and support each other through these disturbing encounters.
It's a very important way that we can begin to understand that we're not alone and that we're being sold short, gaslighted at our most vulnerable times by a service that has long outlived its utility.
No one should be reduced to tears by any service provider's attitudes and certainly not in a health care environment! As you say, how on earth do these doctors think that their dismissive, gaslighting behaviour is going to help heal anything??! All it does is ensure repeat business...oh, wait....
Thank you and yes you're right, I'd be the first to say don't apologise but when you're being beaten down by those who should help, it's soul destroying. I sincerely hope they're not doing it to keep themselves employed but I do think in a strange way they feel superior with the power they have over us when we're our most vulnerable. Sad isn't it?
Yes, I do know that soul destruction they do. It's so hard to tell yourself not to be apologetic and weepy in the moment, because you're so gaslit that you almost believe them...you need someone to tell you 'it's not you, it's them!'
I think of it this way: the NHS runs on a co-dependent dynamic. You know, like people who over-feed their partners so much that they can't move because they don't want to lose the partner. Like drug dealers groom and hook their customers. Then let's look at the 'opioid crisis' in the US where the National Coalition Against Prescription Drug Abuse says "In order to sell the amount they were producing, these [pharmaceutical] companies encouraged doctors and other medical professionals to increase the prescription of these medications by claiming they were not addictive or harmful to patients." Drug companies sponsor some elements of medical training in the UK I was told not long ago. You should decide for yourself what all this means! Me, I see a tangled web with a lot of money involved and where a lot of people benefit and patients usually benefit least. In this interpretation, patients can become mere pawns through which benefits can be made. If you're not a pawn, you can patronise those who are! Big caveat though: there are great medical and nursing staff who are full of integrity and caring, there are practitioners that really do want the best for their patients. It's really hard for them to practice alongside the others. (Sorry, went on a bit there!)
Thank you, as an retired nurse I remember drug company sponsored lunches well, the doctors would have paid for golfing holidays and weekends away. This was stopped in our county at least 10 years ago as the drug bill would be considerably higher a good few months post these events, proving they were encouraged to use that company's particular drug instead of generic brands. Thankfully yes there are some great staff out there but I just want to find one to help with my thyroid. Overnight I was still thinking maybe I am over treated as my tsh is low but having been hyperthyroid initially I know the symptoms I have now are very different. Why won't they listen to me, something is not right?
These guys either are completely oblivious to the current research (perfectly possible since hypothyroidism is so easy to treat and new research can therefore be ignored) or are outright lying. Either way they can’t be trusted. Your life is too important to be left to these nitwits.
Thank you, I agree they are oblivious and closed to any recent research at all but the worst part is she is involved in writing the thyroid NICE guidelines. After my meltdown there and support on here I feel ready to do battle again. Echocardiogram this afternoon seems ok, just cardiologist tomorrow morning to face then I'm getting right back to endo in Birmingham to hopefully prescribe T3.
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My nhs Endo has prescribed T3 trial 
Should I put my t3 back up.
Private appointment result
My Mum's GP said that T3 is only prescribed in emergency situations e.g. a coma.
