I have been on T3 for 11 years. Since diagnosis I have tried T4 eleven times during these years and become extremely unwell each time.
I have correspondence from six different Endos over the years that I am unable to tolerate T4 which I have forwarded (along with other information) to the Specialist Endo who will be assessing me on suitability to continue treatment on T3.
I did this for two reasons.
1. There is too much important information to discuss in one appointment.
2. It is in black and white for future reference.
The last time I posted on here I received some valuable advice from some very kind people. I would appreciate some help again please.
I am going to try to copy and paste the Endo's reply.
I am glad you e-mailed me, because you have been booked into a non existent clinic, that I will rearrange. I will be away for half term that week, and out of the UK, and it is important that I see you personally.
I have read all your notes and letters, and understand both your worry about the withdrawal, and also the problem that the T3 will affect your heart, so we need to find a preparation that is safe and works.
I have many patients on various combinations. It is possible that you are reacting to something in one of the tablets, that is not T3 or T4, as both of these do not generate an immune response unless contaminated.
Do you have a list of the manufacturers that you have had for the T3 and the T4? Some tablets contain magnesium stearate, so if that was in your tablets, that could be a problem. Also are you lactose intolerant
Anyway I need to move your appointment to when I am back.
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I would appreciate any advice before I reply to this man.
I am not lactose Intolerant. I don't have a problem with magnesium stearate as it is contained in the T3 I take. I don't have any heart problems that I am aware of.
Thank you.
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TSH86
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So does his reply include ‘errors’ such as implying that you are not happy with your current treatment, or that you are worried about your heart? Is he incorrect in implying that your current regime does not work or isn’t safe? Is there any suggestion in what you’ve sent him to support what he’s saying?
I think you could state a lot of the points you make in your post above ... and be ‘on holiday’ at the time of the re-arranged appointment (and the next one).
What a horrible position for you to be in, sorry if you’re feeling really stressed. Hope you get some really helpful responses. Good luck xx
(I’m intrigued that he mentions magnesium stearate as I found I prefered levothyroxine with magnesium stearate listed to those with stearic acid)
Thank you Aurealis for understanding. I do feel stressed and feel like crying but have to be strong.
I have clearly stated in my email that T3 has been a successful treatment for me and meets my clinical needs. It is only when T4 is introduced I experience debilitating side effects and symptoms.
I have no heart problems that I am aware of or have been treated for. If T3 does cause heart problems why have they been prescient it for so many years.
He is absolutely incorrect in implying that my current regime does not work or is unsafe.
There is nothing in my email that supports what he is saying, infact it seems to me he hasn't even read what I wrote or is dismissing it.
Have you taken the DI02 gene test? I tested positive and it was enough for NHS Endocrinologist to allow the continuation of T3 only. Being on T4 caused my heart to fail! Endocrinologist admitted inadequately treated Hypothyroidism leads to Cardiomyopathy. Besides it was my Cardiologist who wrote my first prescription for T3, even though I have heart failure and AF. I do believe it's dangerous to self medicate on high doses but so long as you are taking regular blood tests and increasing only 5 mg every 6 weeks it's safe. Also taking blood pressure and temperature. The only risk to your heart would be that you took too much and became hyperthyroid, that will damage the heart also. He sounds like he is just trying to get you off T3 because of financial reasons. Explain you never felt well on T4, you are not prepared to suffer. Point blanc refuse to take T4. If you lose your prescription you will need to go direct to your MP armed with your evidence. I do hope it doesn't come to that. I would never swallow T4 again, it's a pre hormone if it's going to work for you it would have done so in a matter of weeks. Forget the fillers! He is trying to muddy the water there. I have several friends who were hypothyroid all got better on T4 in a matter of weeks. Me suffered for years (see profile). In your position I would just say, "Look I am not going to take T4 when it makes me unwell, T3 had been proven to work so I assume it's just this conspiracy going on in the NHS about funding that is really going on here. As a doctor you should first do no harm. So leave me on T3 please". If he still won't budge you are entitled to a second opinion. If that situation occurs, maybe post on here for a recommendation for another referral to a sympathetic Endocrinologist. My GP told me T3 is the hormone of first choice in the EU, but he has been forced to put some of his patients into T 4 due to cost. He told me I am very lucky to have a Consultant give me an NHS prescription, otherwise he couldn't help me other than tell me to buy abroad. By the way you can get T3 in Turkey without a prescription. In EU you need a private prescription before they will dispense.
I am going to order the D102 test today. I have been meaning to do that.
I'm so sorry you had the heart problems.
I will read your email a few times to take in all the great info.
I have already written to my MP. I believe they have taken it up with the CCG.
You are right he is definitely trying to muddy the water and this is all about finance.
I will refuse to take T4. I have tried it eleven times. Why on this earth do they want me to disrupt my health and my life AGAIN.
He is also ignoring the opinions of six Endocrinologists that I have been under. I have their opinions in writing.
I will try the T3 from Turkey at some point soon but I also am going to try my best with the NHS unless they refund my NI contributions for 40 years !!! (obviously impossible ) then I would be happy to go private.
I can't thank you guys enough. It gives me strength and reassurance I am not alone in this awful situation.
In a way I hope you test positive to DI02. I inherited from one parent. NHS Endocrinologist said I was converting T4 at around 45 to 50 per cent. So that was enough to get NHS prescription for T3. He said if inherited from both parents I would be very very ill. Well that's as maybe I was very very unwell. However make sure you put your name for the results not any Doctor. If you results are negative don't mention it. Also if they are negative the fact still remains you cannot get well on T4. Stick to your guns. Good luck.
I hope so too. I did call Regenerous labs re D102 test. They said they will only supply results to a practitioner. Would I be right in assuming put "my name for the results" means It will be between the Regenerous practitioner and myself. Not my GP.
My Mum is also hypo and she has been fine on T4 for years now but it could be possible I got the faulty gene from my father ?? I think best to get the test done anyway.
I put my name in the box where it says Practitioner. You have to pay for the test and private counselling which happens once your results are ready. They e-mailed mine so I printed off copies for Consultants and GP. It cost me £146 altogether. The councelling was over the phone, not great but you have to have it. Take your sample first think before meds, food, or drink except water. DO NOT clean your teeth until after. There are some survey questions to fill in on one page too. Just tick what is appropriate. It took 6 weeks for my results to come back. So you may have to reschedule your Endocrinologist's appointment. Don't go without it. My mother is also Hypothyroid but does ok on T4, so yes mine from my father but having thyroid issues on both sides is another double whammy. Especially since my Aunt on my father's side very Hyperthyroid and mother Hypothyroid. Add the DI02 gene in that mix no wonder every Endocrinologist I met said" but you shouldn't be this ill with your blood results" Trouble is their ranges are based on healthy individuals with no history of Hypothyroidism/Hyperthyroidism, ergo we have to be guided by body temperature, symptoms and pulse etc.
Sorry to go on but the Endocrinologist who is assessing me has been especially selected for patients on T3 in my area.
I have already been "under the care of" an Endocrinologist for a few years so I think they may not allow me the chance to get a second opinion. Very worrying.
I think if you can show DI02 gene fault they cannot argue with science. If you test negative which I doubt, because you don't do well on T4 should be proof enough. But for me I was refused T3 when I asked for it 19 years ago. Wish the test had been around then, so many years wasted ill. Keep strong, they have stolen our pensions, I want my £40k back and if they want to withdraw my T3 I will sue them! I have been paying their wages with my National Insurance contributions for 45 years, in effect they work for us.
I don't think we have had an outcome of the CMA investigation into Concordia and there has been no decision from the House of Lords debate. CCG's have just whipped T3 away leaving patients untreated.
I'm glad you said that Greygoose. I've thought that too. I have read my email and then his a few times now most of what he is saying doesn't tie in at all with what I have written to him.
Or maybe he’s trying to help you by seeming incompetent (without losing his job) ... he’s not likely to have grounds really to disagree with all those other endocrinologists ... I wonder if his ‘holiday’ is to get you both off the hook, could he be giving you a way out?
One more point that is worrying me. I wonder if someone would be kind enough to share their thoughts.
If this email is meant for me, he has asked for a list of manufacturers of T3 and T4 I have had. I am wondering if he is going to ask me to try T4 by a manufacturer I have not tried. My answer is going to be a big no. I cannot put my body through that yet again. I will not have my health and my life disrupted yet again.
Just refuse, it's not worth the risk. He is clutching at straws if he thinks T4 is going to agree with you. You cannot waste anymore years being ill because you are swallowing the wrong hormone. Remember we all have "free will" & we know how are bodies feel. If you can take someone along with you who has seen you unwell and then improved on T3 it may help. I think you are stressing about this and that's not going to help your thyroid. He cannot be so big headed to think he knows better than other Endocrinologists and more important how you feel. It would be nice to think he has mixed you up with someone else, but it's wise to go with your guns loaded so to speak. The other day I had a really busy morning and got so distracted by phone calls etc that I forgot to take my T3. By 11 am I started to feel nauseous. Then as the day went on I had to keep sitting down. Even felt like a nap. Couldn't concentrate on any task and became irritable. Kept telling my partner I really don't feel well enough to go anywhere. I thought perhaps I had picked up a bug. By the evening it dawned on me I had forgotten my dose so I just took one 5 mg pill. Next day I took my full 30 mg dose and was immediately fine. I am not even in the normal range yet, but it goes to show how important it is to never miss a dose do don't let him fiddle with it or you will go backwards and get sick again. This whole conspiracy about the cost of T3 needs to be blown out of the water. Whatever happens at your next appointment just keep taking the dose that makes you well and make sure you have plenty of back up supply in case he pulls the rug from beneath your feet. Please let us all know how it pans out by posting it. Try to relax, do the DI02 gene test asap. I do empathise about this. I remember being anxious waiting for my results, thinking what else could I do to keep my NHS prescription. But it was all ok in the end. As my Aunt used to say, " today is the tomorrow you worried about yesterday". In other words no amount of worry will change the outcome. Live for the day!
Thank you for your brilliant post !! I am definitely beginning to feel much more stronger about this. You are so right l have been stressed about this and upset and this is not good. Receiving so much support and information from here and great people like yourself has helped me so much otherwise I dread to think where I would be.
I'm sorry to hear about the impact on you of forgetting to take one tablet, I think I know how you feel. I had a similar experience and it's pretty awful.
I have ordered the D102 test. I have also been to the hospital this morning to request my "Subject Access Report" ( medical records ) as I remember having to go to A&E on one occasion when I was on T4.
As you say, I intend to be loaded at the appointment.
A very good friend of mine is going with me who has a medical background.
I also have BTA Statement, PrescQIPP document stating RECOMMENDATIONS.
You are right about having a back up supply. I think I should maybe do another post to ask where and how to get some. Hopefully I may get some pm's.
I will definitely keep you all posted. I'm not going to reply to his email in a hurry as other people have lives too. My friend will have to take a day off from work again.
I love your Aunt's saying and thank you so much for sharing such valuable information. You even picked up that I am stressed!!!
Going to try to relax. We can only try our best and in the worst case scenario I will get my T3 from abroad.
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