I requested my gp to refer me to a private endocrinologist, which he did. I have been seeing my private endocrinologist, who has been prescribing t3 on a private prescription, as well as levothyroxine on nhs prescription from my gp.
Treatment is going well. My gp has referred me to nhs endo..... Should I stay with private endo or chance nhs endo? Im not sure what to do, any thoughts or suggestions most welcome🌸🌸🌸🌸
Well vast majority of NHS endocrinologist are diabetes specialists and useless for thyroid
Email Thyroid U.K. for list of thyroid specialist endocrinologists and doctors who will prescribe T3 if clinically appropriate
tukadmin@thyroiduk.org
Some on list are NHS and private, some just private, some just NHS
Suggest you get FULL thyroid and vitamin testing done BEFORE any Consultation
Hi Geegee777I initially saw a private endo who prescribed t3. I then asked to be referred to nhs endo as I felt I had had a successful trial of t3 and wanted gp to take over prescribing. I was initially told by a truly horrible nhs endo that it would be 3 months, that's it. However I will have had a 9 month trial by the end of this block. The first endo reduced t4 too much. The second appointment re instated the 125,/10 that I had been on privately but the different t3 gave different results. I was on thybon henning privately and get Morningside from nhs. Pharmacist didn't want me splitting tablets so she insisted on 5mcg tablets. It's definitely easier not splitting tablets. I have seen three different endos at my three appointments so not really good continuity of care but the second 2 were really approachable. I think who you see and where you live might dictate your experiences. On the whole for me to have everything under the same roof so to speak is preferable to me. I have visions of ending up in hospital and not getting t3 because its not prescribed!!! I wish you the best of luck.
So long as you have your private Endo there's no harm in trying to get it prescribed on the NHS. Can always fall back on him/her. To an extent it depends what area you are in and if you can get to see one of the T UK doctors as I know in my area the Endo's are anti T3 so would be a waste of my and their time.
There are limitations to getting T3 on the NHS that have put me off even bothering to try. Mine is currently privately prescribed. People have had their prescription abruptly cancelled, brand changes, changed from tablets to capsules, dose limitation and some Endo's insist on TSH being within normal range. The sheer effort of it all has put me off as I have zero energy to spare! Good luck if you decide to try.
Dear Geegee 777,
Based on personal experience and if you are happy with the management of your condition, I would be inclined to stay with your private Endocrinologist as depending on where you live, ie, in a postcode lottery, will very much depend on what is available locally. You will certainly get continuity of care if you can continue to see the same person; this is not always or even usually available on the NHS these days. Never seeing the same person again can also be stressful as any good relationship is based on trust and if you are unsure or unhappy about who you are seeing this will only add to your concerns. Hope this helps.
I was eventually prescribed T3 (Thybon) by my private only endocrinologist after the NHS Endo flatly refused even a trial of T3 combined with my T4 levothyroxine. NHS said it was all down to cost of T3 medication. How dreadful that a person can be abandoned like that. I could barely walk. The T3 trial was a huge success and nowhere near as expensive as the NHS. After the trial I returned to see my NHS Endo who still flatly refused to prescribe. My private only endocrinologist intervened as next NHS appointment I was prescribed NHS T3. He was reprimanded I was told by my GP who had always been on my side. The NHS Endo who was horrible threatened me and said if my TSH goes suppressed he will immediately take the prescription away. How dreadful and scary that period was. I have managed with some tweaking to keep my TSH just about in range and keep my NHS T3 supply of Morningside going. However, I still consult with my private only endocrinologist and also get my private Thybon too. I do this as one day I may end up in hospital and as you say need that T3 prescribed on the NHS. Or even in a nursing home. You have to plan and think ahead to protect yourself. I also do this as one day that horrible NHS Endo might,just might, stop my prescription for T3. You have to box clever and be one step ahead. Plan for the worst scenario always. Then you can relax and live your life. I’ve never felt so good and youthful since starting T3. I’m a poor converter confirmed by blood tests only 8% to T3 from T4. Plus I did the DIO2 gene test which came back positive. If I was you I’d see the NHS Endo and also keep your private Endo as backup. You only need an annual private consultation over the phone.
Thank you for your reply, I was going to cancel nhs endo, but your reply has got me thinking, yes i will see nhs endo and take it from there. I have thybon t3, not sure if id like to change brands due to lactose sensitivity, nothing ventured nothing gained though🌸🌸🌸🌸🌸
I have tried the Morningside for a few months but I found it stronger and I’d go dizzy and other over medicated symptoms. I also put weight on which I was definitely not expecting. When I got my bloods done after trying the Morningside my TSH has gone higher. I was expecting it to be lower. Thinking about it I feel the Morningside spiked quicker but maybe didn’t last as long. I’m not really sure but this is how it felt. I much prefer Thybon. I get my bloods checked every 3 months without fail. I send a copy to my private endocrinologist who is always very pleased. And I also send a copy to my NHS Endo as he is just out of my local NHS area and he can’t see my records. It proves my TSH is in range each time and my prescription will not be stopped.
HiI'd agree with you in that there is a difference between thybon and Morningside. I would say I felt better on thybon too but I much prefer not having to chop up the tablets. It's strange, you'd think there wouldn't be so much of a difference as there seems to be.
Brave you McPammy. It seems we thyroid patients are literally paying the price for the mess the NHS is in and none of it is our fault. It’s ridiculous the efforts we have to make on our own behalf, just when we are at our lowest ebb. Nobody likes a bully and the behaviour of kicking someone when they are already down is beyond disgusting.
I was worried at first but now I feel I have the upper hand. You just need to be one step ahead. Terrible I know. Friends don’t believe me when I tell them about how thyroid patients are treated. To be honest I wouldn’t have either before I lived through it. I just assumed hospitals and Drs would help you. Not all do. I lost my fab job because of all the blind alleys and terrible Drs during my worst period of 18 months. It was only going private only that I was helped.
Similar. As an aside I was just watching Beth Rigby interviewing Nazarin Ratcliffe and she mentioned women in Iran being ‘managed’. Crikey it’s no different here; especially us with thyroid problems. Sometimes it is difficult to believe this is happening in our ‘free country’!
McPammy how do you tweak your TSH to keep it in range?
I tweaked my levo T4 levels. I take liquid levo so it’s very easy to slightly alter your dose. I reduced my dose from 75mcg to 68 mcg a day. Doesn’t seem much but it’s worked. I also split my levo T4 dose. I take 34mcg at noon then a further 34mcg at 4.30pm. If I take the full dose I feel I’m going over medicated. I don’t know why I can’t take my full dose anymore as I always use to take it on waking. I just can’t tolerate a full dose in one hit anymore. I also split my T3 liothyronine dose 5mcg on waking and 5mcg about 3pm. My TSH a couple of weeks ago was 0.87(0.35-5.50). My t4 and t3 levels were just below mid range. That’s without taking any medication before my 9am blood draw. I feel extremely well and energised. My private and NHS endocrinologists are very pleased I can keep my TSH in range and take T3. I don’t alter my T3 doses just the levo.
Levothyroxine is the treatment of choice for hypothyroidism
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Decent endocrinologist in South Yorkshire?
