Hi All, hope everyone is doing well! Bit of a vent, and to please ask once again for your expert advice on the next steps to take? I had my first long awaited appointment with endocrinology. I came home very upset and had a very similar experience to many here. I was hoping for a trial of T3 with my Thyroxine. I have for the past 10 years had worsening of all the classic hypo symptoms, (and more!) Basically I was told my symptoms were vague and non specific and I should ask the gp for these to be investigated as they may not be thyroid related. I don't have any other health conditions, but have long term cystitis, anxiety, high cholesterol, chronic constipation, dry skin, fatigue, brain fog, hair loss, that I reckon are hypo related. I was advised to reduce my thyroxine as I was overmedicated, she said this on the basis that I was hot and sweaty at the appointment. I was very hot (25 degrees, no air con & suffer from worsening anxiety!)and was totally exasperted by her attitude/ complete disregard of my symptoms and lack of empathy. Told me I was at risk of osteoporosis, cardiac probs and atrial fibrilation then told me I was being discharged! She hadn't even checked my T3, GP doesn't check it. When politely trying to discuss with her, she and told me I was misguided and been given wrong information about Tsh & T3. Went on to explain the TSH feedback loop, even though i told her i knew about this and had done a lot of reading. I told her i was very disappointed after waiting for this appointment for a long time, my worsening clearly, hypo symptoms that I was getting discharged with out my t3 being checked, she then agreed to give me another appointment in 6 months and check t3, bone profile, cardiac profile and a bone scan. She emphasised i would need to lower my Thyroxine if they were to offer me another appointment, but under no circumstances would i be offered T3. I am thinking of lowering to 100mcg one day and 25mcg every third day, just to show willing. I currently take 100mcg and 25mcg every other day. My Tsh is 0.12, ref range is (0.27-4.2) T4 is 19.4 ref range is (10.5-24) i'm thinking of buyingT3 to add to my thryroxine and following guidance on self medicating from the excellent forum. Someone had kindly messaged me previously about this. I had a look at the private GPs but I can’t afford their fees. Positively, since supplementing with vitamins, from advice from here, I'm feeling better and i think my hair loss has slowed down a bit . Thank you i
n advance for any thoughts on the above or any guidance on next steps.
Thank you!!!!😘
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VEG71
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First step is to test TSH, Ft4 and Ft3 yourself BEFORE even considering reducing your dose of levothyroxine
it is (unfortunately) a waste of your time (and sanity) to go to a consultation without getting full thyroid and vitamin testing done yourself BEFORE consultation
They just try to bamboozle you out the door
All thyroid blood tests should be done early morning, ideally just before 9am and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
I'm so sorry you had a pointless appointment - it is so disappointing when you know the issue and the endo is not prepared to listen, and can only presume she was a diabetes specialist with very limited knowledge and unable to prescribe T3 anyway for fear of breaking hospital guidelines.
The presumed ' endo ' has focused on the fact that your TSH is low suppressed and dismissed you suggesting a dose reduction with a T4.
Your T4 is at just around 66% through the range and we generally feel better when T4 is up in the top quadrant of the range.
There is no T3 reading so we do not even know how well you are converting the pro -hormone T4 - Levothyroxine into the active form of T3 on which the body runs.
I can't see any point making yourself more ill just to be knocked back again in 6 months time :
I just don't understand how these people sleep at night:
Thank you for replying and kind words. Such a disappointing experience! Yeah not sure about reducing thyroxine at this stage, will see how the T3 is, the results are getting posted I found out today. Planning to find out more about trying T3. Hope you are OK, thanks again!
suggest after getting full blood test done now ….BEFORE you try splitting your levothyroxine. Taking half daily dose waking and half at bedtime
It might help improve conversion rate
Get full thyroid and vitamin retested 6-8 weeks after any changes
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
Similarly if normally splitting your levothyroxine, take whole daily dose 24 hours before 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
I am so sorry to hear this story. It is very similar to my experience earlier this year (although I did at least have T3 tested). It's even more upsetting when we wait such a long time for the appointment in the first place.
I would encourage you to do a private test to check T3 and then post your results on here for advice.
Thanks so much for replying! It was awful, sorry you had a similar experience! Do u have another Endo appointment? Somehow I thought it would be different, should have known better really, considering the horror stories I have read here. They did check theT3 at least. I contacted the clinic today, they will post the results, so so keen to see what this is at and then work out (not sure exactly how) if I am a poor converter, is it down to T3 levels plus symptoms? Yes, going forward, will just do the private testing in future. GP doesn't check T3. Thank you again! Hope you are doing OK, Have a lovely eve. 😊
I'm so very sorry to read your story. It echoes the story of many, but that doesn't help, does it?
You've been given good solid advice, and I do hope you find your way to better health.
Seeing an endo privately is very expensive, waiting on the NHS means months of not feeling well....and unless you are extremely lucky with a knowledgeable endo at the end of it all, you have no idea if they'll be willing to help...or not.
I'm coming to the same conclusion as you and many others on here.
Learn as much as possible from this great forum.
Get our thyroid's basic needs met ...good levels of Vit D, B12, folate and ferritin, do private blood tests as and when, and if the GP won't, bite the bullet, and self medicate.
Thanks for the hug and reply! Much appreciated. Yeah seems a similar story to many, not good. Yes grateful to have found this wonderful forum!! Thank you for the advice! Working on the vits and finding more about T3/trial self medicating.😃
Hi, thanks so much for your reply. Good luck with your appointment. Hope it's a better experience than mine. Is that your first appointment? Yes me too re the experimenting and great to have the advice from here, so glad I found this forum. I'm feeling better 3 months into improving my vitamins from advice from the forum. That's great about your T3! How do you confirm poor conversion? I need to find out a bit more about that. Would u mind private messaging me please about where u buy your T3? Thank you.
Good luck with your next test! That's amazing everything has improved. You must be so pleased. Wha symptoms that have improved? If you don't mind me asking that is? Thank u really appreciated. 😀
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