T3 10 mcg was removed in 2021, no discussion at all, then in Jan this year T4 reduced to 100 from 125. Now on 75mcg T4 and 5mcg T3 on a trial, two months in.
Even though I have overt symptoms of hypothyroidism and have no thyroid my endo (head of dept here) does not agree that my symptoms of breathlessness, hair loss, dry skin, exhaustion, hoarse voice and more, are indicative of being under-medicated. He has agreed to do a TSH. All this by private appointments and tests as NHS not available to me due to waiting list.
I am almost 70 yrs, weigh 52 kg, was previously very fit and healthy. Feeling very upset by this lack of care (that I'm paying for!) and a somewhat misogynistic attitude. Hoped to enter my 8th decade in great health, now not so sure that will happen and I so wish we had the great doctors we used to have.
He has now referred me to the recent guidelines on BTF website published in June.....these have filled me with despair. Has anyone read this statement?
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ArtCritic24
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I'm sorry that this is happening to you. The good news is that you are being treated privately and can fire this Endo if you don't agree with them and find a different one who will hopefully help you more.
Email info@thyroiduk.org for a list of T3 friendly Endo's. Pick one or two then make a post asking for people to share their experiences of these Endo's with you by personal message only. Your post will be locked to prevent people posting on the open group. Remember that some Endo's use virtual consultations so don't be too restricted to your specific area as you could consult with them online.
Have you started on any vitamins yet? How's that going?
Thanks, Jaydee. I will follow up on your advice today. Re vitamins, I take Vit D3 5000, Vit K2M7 75, Fish oils, Mg 400 am and pm, Hemaplex x 2 per week which has all the B vitamins.
My only T3 result , done early this year, was 3.6. T4, TSH normal. I raised the T3 to 7.5 and T4 to 100 pre and during holiday in May....felt like a new person, relaxed, happy! But because the prescription for both T3 and T4 is only for 2 months at a time, had to reduce as soon as we returned. I had been on T3 10 and T4 125 for 21 years until T3 taken away in Nov 21 and T4 now at 75 since two mths ago. Can't tell you how frustrated and down I feel about this. Endo not at all easy to deal with.
Many Endo's aren't easy to deal with unfortunately. They tend to have very fixed ideas, so pick carefully this time around. Try and find one that isn't fixated on TSH, your FT3 looks horribly low.
About the Hemaplex. It looks like a multivitamin containing iron that we absolutely don't recommend here.
Multivitamins are not recommended in this group for a number of reasons, including being too low a dose to raise levels to optimal, including iodine which is not recommended when hypo and including iron which prevents absorption of the other vitamins and should be taken apart from other vitamins/Levo.
You would be much betetr off replacing that with a decent methyl/active B complex. I will list 3 that you can choose from. Take daily.
Thanks for this very sound advice, Jaydee 1507. My endo insists he would be perfectly happy with this T3 level for himself or family member! Can't believe what he says anymore but I realise, from reading others' posts here that he is quoting from a carefully prepared script they all use...."no, none of these symptoms you describe are in any way related to your thyroid status". It's a form of gaslighting that feels very offensive. Will order supplements today.
I’ve found in my experience that a NHS/private Endo will still follow the NHS guidelines. Even though I was paying he wouldn’t listen to me. After being advised on here I went for a private only ( no NHS involvement) consultation. I was diagnosed almost straight away and put on a T3 plus levo 3 month trial. It was a huge success for me. Most importantly I was put on the correct doses which I ‘be not changed really. I continue to do very well indeed and feel energised. I can get my medication T3 privately or I can now get it on the NHS. I keep my private only endocrinologist appointment once a year as my safety net and see my NHS Endo as and when. I found private only was my only route to success. You can sack your Endo if you like and chose private only. If you’d like my private only endocrinologists details please just message me.
Thank you, McPammy, for this very useful suggestion, although how it will work in practice worries me a bit. I'm not sure we have such an Endo here, though will check, and if I use someone from elsewhere, my GP may not agree to prescribe what I need. I feel that in my older age that I want my meds documented and prescribable as an NHS patient, though will pay for private prescriptions if necessary. It's accountability I am seeking, though, quite frankly, they are abdicating responsibility for my poor treatment at he moment. I have been told this week, in front of my amazed husband, that none of my symptoms are due to thyroid med issues, but there is no suggestion as to what might be causing the hairloss, dry skin, gut problems, exhaustion, hoarse voice, low mood etc! Which all reversed when I recently 'stole' T3 from my tablets on holiday and I felt so great! But because the prescription is on trial basis there is no continuous supply without private appt every two months!
I will get back to you if I have no luck here in NI. Thanks again.
my private only endocrinologist is very well respected within the NHS. So if he says do something they jump in my experience. He does zoom, telephone and face to face. So if you live far away from his practice you can do consultations by telephone or zoom. It’s about symptoms, and blood results really. He is pro T3 and very experienced. I got my T3 through him privately from a UK pharmacy. I now have it on my NHS records that I require T3 medication as well as T4 levothyroxine. I now get my T3 off the NHS. They can’t refuse if you’ve had a successful trial. Well you can then at least prove it. Other thing you can try is PALS or your local MP for help.
Sending a hug - the new guidelines are worse than the restrictive ones we campaigned the Government on.
I resorted to self medicating as I came up against a brick wall in 2017/18 as no new patients were being prescribed T3 and those on it actively encouraged to reduce and switch to T4 monotherapy.
If T4 monotherapy worked well for us all, we wouldn't be here but getting on for our lives and this forum not with an ever growing number of unwell members !!
but when T4 stops working well for you - why should we be treated in such an awful way -when there are known alternatives that were readily available through your doctor up until the turn of the century ?
Thanks for your support. It's great to talk to so many people who 'get it' because I know absolutely no-one who is without a thyroid and I have felt very alone at times. This is made so much worse when arrogant doctors do not listen, refuse to accept a patient's lived experience and make consultations.....which we are paying for.....very stressful both in anticipation and execution. I honestly believe that if the M:F ratio were reversed the situation would not have arisen or be sustained because men would not put up with it!
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