Hi everyone, I have no idea what to do now. Endo started me on 10mcg of T3 (capsule) and lowered my 100mcg of T4 by 50%. From 100mcg to 50mcg. Felt slightly better the first 3 weeks, skin is more normal looking rather than dry. Fatigue still bad. Tummy pains went when I ate and gallbladder pain went too. After the 3rd week started to feel rough like I am going backwards.
Had a blood test 18/10/23 (still not got results) am I able to ask endo nurses for results? All the endo nurses said to me was the the endo has given you another prescription for 3 months of T3 the same 10 mcg!!!
I was under the impression that I needed to slowly raise my dose up every 2 weeks. Looks like this endo is treating T3 like T4. I have been on 6 weeks of 10mcg of T3 with 50% cut in T4. The last 3 weeks my hair is now like straw and breaking off every time I brush it, My skin is getting dry again. Slight tummy pains coming back when I eat, not like before. I have done the suggestion from here and up my T4 to 75mcg, ready to up it to a 100mcg in a few weeks.
Does what this endo is doing with T3 sound right to you's guys?
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Katherine123
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It is your legal right to have a print-out of your results. So, don't hesitate to ask. You really do need to know the results to see if the endo is right in telling you to continue on the same dose, or if he should have increased. It does sound as if you need an increase.
Your levo was probably reduced by too much. But, as most doctors have little understanding of how to dose thyroid hormones, they just blindly follow a protocol - who decided the protocol I wonder - without adapting it to fit individual cases.
Does what this endo is doing with T3 sound right to you's guys?
When it comes down to it, there is no right or wrong way to dose T3 - well, there is a wrong way, but it's only right if it suits you. And by the sound of it, it doesn't. So, you need to have a word with your endo and ask what exactly he's aiming for with his dosing of T3. The doctor/patient relationship should be frank, open and honest, with the doctor explaining what he's doing and why. He not there to bark orders, he's ther to discuss possibilities and advise the best way forward. It doesn't really sound as if he knows what the best way forward is, to be honest.
Hi greygoose thank you for coming in and helping me out, it is so appreciated.
You said: It is your legal right to have a print-out of your results. So, don't hesitate to ask. You really do need to know the results to see if the endo is right in telling you to continue on the same dose, or if he should have increased. And you said: So, you need to have a word with your endo and ask what exactly he's aiming for with his dosing of T3. The doctor/patient relationship should be frank, open and honest, with the doctor explaining what he's doing and why. He not there to bark orders, he's there to discuss possibilities and advise the best way forward. It doesn't really sound as if he knows what the best way forward is, to be honest.
As I read your reply I just burst into tears, huge tears rolling down my face. I cannot ask! I am too frightened! I have suffered a few terrible ordeals of late from hospital consultants and actually in hospital. This is due to my gallbladder cholecystitis. They left me in daily severe pain for a year and a half. The cherry on the top of the cake seems to be my last consult with the general surgeon in the hospital, this month. I have a adrenal gland tumour on left adrenal and my gallbladder problems. The consultant was so bullying as I refused the CT scan. CT scans emit something like 20/30 times radiation as one x-ray. I had already had the special MRI which diagnosed the adrenal tumour and had a few ultra sounds. The general consultant said it was 12 cms the size of a cricket ball and it is not my gallbladder causing the daily pain and I need a CT scan as well.
I had to pay privately to see [name redacted] at Harley Street, I could not wait a year and a half to see if it was cancerous. He told me and followed up in a letter to me. That the radiology department had made a typo and it is 12mm not 12 cms. It is a normal benign tumour of the adrenal gland, which is more common than you think. Lots of people can have one and it is benign. It won't cause me any harm and my gallbladder operation should not be held up because of this.
When I said to the general surgeon this month no you are wrong, it is a typo, explained that I went to see [name redacted] and he and his top radiologist went through my MRI frame by frame and measuring. He refused to believe me, raising his voice at me saying radiology would not make a typo. He said you have lost trust in me and I am refusing to see you anymore. So now my adrenal tumour and gallbladder does not have a hospital home because I refused a CT scan.
I do realise that I have been bullied terrible by the NHS this last year and still suffering the aftermath, along with not sleeping well because of flashbacks. Normally I am someone who asks questions and collects all my blood tests. Except from the hospitals they have ignored my requests in the past.
I realise I am too frightened to rock the boat with this endo as he was the first to actually diagnose T4 way over range T3 low in range. I am scared he will sling me out and off of T3. I do realise I must be suffering with post traumatic stress after all I have been through with hospitals in the last 18 months. Normally I would say I am a fairly confident person.
I'm sorry to hear all that. Some doctors are terrible bullies, I know. I've seen a few myself. They're just plain nasty, and disrespect their patients. But, you don't have to ask the doctor for your results, ask the secretary, or a receptionist. As we used to say as kids, if you don't ask, you don't get. They're never going to just give them to you.
I wish I could give you more concrete advice, but my reaction to that sort of behaviour is always do dash off a letter of complaint to the hospital goveners, or whoever. But I do understand not wanting to rock the boat. Can't you talk to your GP about all this and ask his advice?
Everyone is saying to put in a complaint greygoose and the incidents are 1 tenth of what I told you in this message. If you looked on the nurses board there was 3 or 4 complaints about the nursing staff every week. They were even shouting and insulting patients visitors. Now this gallbladder consultant has put the cherry on the top of the cake. How can they just dismiss you and leave you with no hospital or treatment. It is our rights to refuse any treatment. My friend who had breast cancer would not have the chemo or radiation. The surgeon did not refuse to cut out the cancer.
I have been sick a very long time and now this endo has said well your T3 has been on the ground for years. It has all started to make sense. At the moment I have the feeling if I complain then I will get even worse treatment. Half of me says this has to stop think of all the other people going into that hospital. I saw others being bulled too, but I was to ill to stand up for them, Normally I would have done.
Because the T3 has stopped my daily gallbladder pain, it was awful living for 18 months in daily severe pain. It really dragged me down and the weight was falling off me and I was slim to start with. I don't want endo to stop the T3. Hope this makes sense greygoose. I have since done a lot of research on gallbladder and thyroid and they are so twinned. Apparently it causes functional gallbladder disorder, biliary dyskinesia a motility problem, which causes bile sludge that then turns into gallstones and sphincter of oddi malfuntion. What I am gathering trawling through pub med this sphincter is similar to our tummy one. Which can also play up and cause lost of tummy issues. Taking T3 has also stop my tummy digestion pains too. And my tongue no longer swells up.
You could buy your own T3 on-line, without a prescription, and self-treat with it. Then, you could increase when necessary without the hassle with your endo. He doesn't need any special favours just because he did his job. And assessing your need for T3 was his job. It's also his job to treat his patients with respect.
Yes, make a new post because replies have to be by PM. We're not allowed to mention sources on the open forum, so admin will close the post to replies.
I will not feel so much at the mercy of the NHS greygoose. Someone has already messaged me and asked if I would like the name of a UK supplier. I said, yes please. It has put my mind at rest a bit. Just waiting for her to get back to me.
Just a word of warning, not all suppliers are ligit. And beware of unsollicited messages suggesting one. Contact an admin before buying to check if it's a scam or not. Have a look at this post:
I only need 7.5mcg added to my dose so there may be no need to up your t3 dose. What is probably causing probs is the cut in your t4 dose .My endo also halved my dose of t4 down to 50mcg when t3 was added. That brought my ft4 down to 0% through range and I felt awful.
Feeling well is not just about adding more t3 - it's about getting the balance right between t4 dose and t3 dose as one affects the other. It is trial and error
Thank you for coming in Lalatoot. It does make sense. I have upped my T4 from 50mcg to 75mcg. Not feeling any difference at the moment. Still feel so unwell. I am going to up T4 again in the next couple of weeks to my original 100mcg. Also taking the 10mcg of T3. I take cofactors like my B's, magnesium, selenium etc. I am also on B12 injections. I rattle with the supplements I take
My endo followed the local NHS protocol which waswhatever the patients blood results ignore them, reduce levo by 50mcg and add in 20mcg t3 immediately.
To keep the endo onside I did reduce the levo and add in the 20mcg lio but I did it over 3 months which surprised the endo. They were out of their depth but we're very pleasant. Luckily COVID and lockdowns happened so I could keep the endos involvement to phone and prescription writing and do my own thing. That's how I started upping my levo and reducing my t3 doses till I felt I was at a stage where I needed to be on doses longer term.
Phew! lucky you did that over 3 months Lalatoot. That could have been a big shock to the system. I am understanding that this is going to be a journey. I am just afraid if I rock the boat with endo he will stop the T3. I have already had some good positives, it is only the last 3 weeks I have been going backwards.
upped my T4 from 50mcg to 75mcg. Not feeling any difference at the moment.
Don’t rush …..you wouldn’t expect to notice any change for at least 3-5 weeks
Wait 6-8 weeks on 75mcg levothyroxine, then retest
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
On T3 - day before test split T3 as 2 or 3 smaller doses spread through the day with last dose 8-12 hours before test
Will do SlowDragon. I will stay on 75mcg longer before I up dose. Thank you for the code. I have just emailed endo nurses asking for my blood test results and ranges for my 18/10/23 early morning blood test. I will post as soon as I get them. Thank you so much for your help.
SlowDragon I have been on the upped T4 dose of 75mcg for 4 days now. I take T4 at night and T3 in the mornings. As I was not sure if I could take T3 at night.
Well ideally you would split the T3 dose…..2 or 3 or 4 smaller doses spread through the day
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Thank you SlowDragon. My son will pick up prescription from hospital for me and I will make sure I go to Boots by uber. I am house bound I will ask pharmacist for tablets.
I am so sorry to hear about your awful sounding experiences with your doctors.
I can empathise as when I was having gallbladder pain (cholecystitis) a couple of years ago I was convinced it was due to my T4 dose having been recently reduced, but of course my GP referred me to see a surgeon to have my gall bladder out and this surgeon was an absolute bully! Refused to consider the why of it and just wanted to whip it out. He argued that if I wasn’t willing to have surgery that I shouldn’t be allowed an MRI to diagnose the gallstones. I should have complained about his behaviour - I was so shocked, I couldn’t believe a doctor (do no harm etc) was such a dick!! Fortunately my TSH spiked and my T4 dose was increased and my gall bladder problems have disappeared. Ta da!
I then decided to add T3 into my regime as have never had good conversion, but I’m quite well otherwise so really didn’t think that I would get a referral to an endo and decided to self source.
What I wanted to say to you was, stick with the endo for now and at least you know your T3 is legit. I’ve checked the source of my T3 with one of the admins from this forum, but they have advised that I should try to get it prescribed. That’s not going to happen for me on the NHS and I am not keen to spend a fortune on a private endo. If you do decide to self source, do pm me!
Try talking to yours as others have suggested - at least they have recognised that your T3 has been too low for too long - that’s a lot more than many on this forum have experienced. They almost sound helpful.
I agree with GreyGoose that you need to be part of the decision making process when it come to dosage. Cutting your Levo T4 by 50% was way too extreme. Having had my awful encounter with the surgeon, I have changed GP and have found someone I can have a sensible conversation with - they are NOT all the same and I feel much more of an influence of my treatment plan with her.
For further guidance I’d recommend the Paul Robinson book, The Thyroid Patient’s Manual, which is pretty much consistent with much of the advice on this forum. He suggests to stay on full T4 dose while adding 2.5-5mcg T3 at a time, splitting it into 2/3 doses weighting more towards morning. Only then consider dropping T4 dosage depending on symptoms.
Meno56 I am so grateful that you decided to come in and share your story with me. When I try to tell people they give me the blank fluoride stare look or like I have suddenly grown 2 heads.
Doctors and consultants have forgotten we know our bodies and brains better than anyone, we are the experts when something is not going right for us. They refuse to listen to their patients anymore and take a full history, they only want to go by blood test results. I suspect it is a cost cutting exercise. It takes time to listen to patients and understand where they are at and then make clinical judgements on how best to help them. In the old day doctors use to be health detectives, not anymore.
The more I deep dive into blood tests results too. The more I realise how useless they really are. Most of the time you have to be on deaths door for anything to start showing in bloods as the body will rob what we need from cellular level to keep the bloods stable. Most of us are probably walking around empty at cellular level. T3 goes a long way to righting this.
I have started to deep dive search. it is no picnic going through all those pub med documentations and scientific reviews I am finding how closely connected the thyroid and gallbladder are. So much so that the scientific reviews have even concluded that all gallstone patients should be screened for hypothyroidism. This never gets filtered down to street level unless there is money to be made in it.
The treatment I had from nurses and now this consultant has really taken me down at the moment. But even in the depths of winter there is an invincible summer in me I will rise :). I could not even stand up for other patients that were being bullied my blood pressure was dropping so low 50/82. It was my blood pressure that alerted this new endo to how unwell I was.
You were right Meno56 all along, about the drop in your thyroid medication causing this. Someone has kindly messaged me with her thyroid story and the name and email of her Uk supplier to obtain T3 in the UK. I am going to run it by SlowDragon first and if all is well. I will message you the supplier dearest.
I would get hospitalised with the gallbladder pain and they would put in an IV and pain relief in A&E and then I would end up on the ward. The pain relief would work. As soon as I started to eat their not nutritious food (how can any one get well on hospital food) I would have a relapse and my cholecystitis would start to painfully flare again. The IV's they tried to put in had all failed as I was unfortunate to have trainee doctors doing this. I was by now so pain sensitive Paracetamol and codeine by mouth would not even touch the pain (and I have had 2 babies) the pain is worse than labour. Morphine by mouth would only work for 20 minutes.
I always tried to leave the ward and go into the nurses unit to let them know so I would not disturb the other patients at night. No this was wrong according to them. Back to bed I went, moaning in pain all night, I could not help it. One nurse, sister I believe she had a blue uniform on, she came in and shouted at me "can you please stop moaning I have sick patients on this ward" The pain was so bad I ended up throwing up half the night This episode is just one tenth of the bullying and nastiness treatment I had received I am such an easy going person too
8pm in the morning I called one of my sons and he left work to come and get me. I had to discharge myself. I knew I would not survive in there with the care I was getting. I was already weighing under 7 stones and so weak. They treated my son awfully too.
Whilst my son was waiting to get some papers signed in the foyer. Another women was on the phone to PALS saying "I have to get my mother out of here, the treatment by the nurses is appalling, they will end up killing my mother". I do not think this is a one of incident with this hospital something needs to be done. As I get stronger maybe I can do something.
I have just book the Paul Robinson book, The Thyroid Patient’s Manual 2 weeks ago and am reading through it
Well done Brightness, normally I can stand up for myself and be assertive. I think it is the culmination of bad treatment by NHS staff and the bullying that has taken me down. I am also the one that stands up for others too, I could not even do this in the hospital as I was so ill. The mistreatment in that ward was terrible,
I know that sometimes when felling unwell it's easy to feel helpless. Bullying is everywhere sad but so true. I think that these horrible people would have been the school playground bully. Like you I have always stood up for others but especially when ill it's hard very hard. Take Care and I hope that you get the best treatment you deserve.
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