My GP increased my levothyroxine from 125 mcg to 150mcg in January following surgery in September.
My results this week are Tsh0.19, T4 25 and T3 4.95.
Lab states TSH is now below range and T4 over. My symptoms remain unchanged as hypothyroid and I have explained to my novice GP that my T 3 needs to be in top of range and that this indicates a conversion issue. He said he can’t prescribe T3 and I should go private.I feel abandoned by the hospital as they removed my thyroid but have not provided aftercare.
I keep falling asleep in n the daytime something I never did prior to my op and I have neuropathic pain and n my legs.
Can anyone suggest a private endo.
Thank you
Written by
Mazzer
To view profiles and participate in discussions please or .
Was this test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Do you always get same brand of levothyroxine
Which brand of levothyroxine
Essential to test vitamin D, folate, ferritin and B12
Have these been tested recently
What vitamin supplements are you currently taking
Email Thyroid UK for list of recommend thyroid specialist endocrinologists who will prescribe T3....
...NHS and Private
tukadmin@thyroiduk.org
Roughly where in the U.K. are you?
Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works
North Star accord. Always the same. Test 24hr after last food or drink. B12 and D all good. Ferritin normal but could improve.taking vit D high strength vit B . I’m in Exeter and have the list.
Northstar 50mcg and 100mcg are Accord levothyroxine
But 25mcg Northstar is Teva
Many people find Levothyroxine brands are not interchangeable.
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Teva, Aristo and Glenmark are the only lactose free tablets
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Note Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but beware 25mcg Northstar is Teva
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
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
Yes to all your questions. Did total gluten free for 2 years and no noticeable improvement. I eat well and avoid soy, iodine and processed food and eat gluten minimaly. I make my own bread and eat this sparingk.
I had a TT also, ten years ago now, and I feel your pain - the NHS totally abandoned me also. I'm now on NDT that I buy myself and ditched the levo (I was prescribed levo and T3 too and that made no difference either, I felt like I was dying). I do know an endo that will prescribe NDT (he's also a func med) but they are very expensive, and I don't use them for thyroid really so not sure what their bedside manner is like in terms of all this, but do PM if you want their name, might be worth an exploratory email to find out.
And as I'm sure you know, there's nothing to worry about with your numbers being out of range (my TSH is so low the machine can't read it) but you might be interested to know that my numbers on synthetics and on NDT were exactly the same on paper, but I'm an entirely different person, blood tests are not the be all and end all, symptoms are. My endo at the time said to me privately 'NDT is the only thing that works in patients like you, but I'd lose my job if I said that now' - they do KNOW what the problem is, they are just hamstrung by the pathway. With my NHS endo now, we have an omerta, I don't mention the NDT and she pretends she doesn't know, it's madness.
Whilst I agree with other posters that B12, folate etc are important, in my case, all that was optimal whilst on levo and I still felt like absolute death, the only thing that changed it for me was switching to NDT. I've had other bumps along the way (mainly iron, you need to watch tht if you're TT, for some reason we just lose it) but my night to day moment was getting on the right replacement.
Thank you for your thoughtful reply. It helps to know that there are others who understand. Yes, it feels Kafkaesque. “You’re in normal range” - no treatment, “You’re out of range” that’s fine too.
I would like your contacts as I don’t think I will get very far with the NHS route.
Hi Marian, you're welcome. Hang in there, it is possible to get better, but we do have to start to game the system a bit. Ideally a good private endo letter on your NHS file will work wonders, but even if you sourced the NDT yourself, and got monitoring NHS, that'd be progress.
I've honestly had horrific treatment by GPs, really really crap (one marched me out of the surgery by the arm, and threw me out!! Another, to my tearful desperate face said 'stop crying, we have people who are actually ill here' - I did enjoy the look on his face when finally somebody took me seriously and I handed the fool a letter saying I had life threatening Graves, hashis, hashitoxicosis, TED and CANCER!!).
I'll drop you a PM. With this endo I'd suggest telling them you don't have insurance, and if you want quite a focused apt then say that too, as he's a func med also so risk is you go wandering into the weeds on other nutrients, when really the key in your case I'd say is ensuring your iron is high enough to tolerate a switch to NDT and then getting on NDT!
You could phone the local Endo clinic and plead your case. Beg to speak to a doc, say you're desperate etc. I find I have to beg and plead for everything. That said, my Endo has disappeared to the Covid effort. So I am now begging and pleading for my T3 to anyone who'll listen (but succeeding).
Oh gosh Mazzer I can 100% relate. I love that they yank your thyroid out give you some pills tell you to test in 6-8 weeks and as soon as your numbers fall into the magical range they throw you away like trash and if you complain about issues they claim it has nothing to do with your lack of thyroid it’s something else, like your mental or menopausal and then you a rinse and repeat all over again at your next appointment. Such a Joke!
Im 4 years into the rinse and repeat medical treatment for being thyroid-less and I developed arthritis issues that I did not have prior to thyroidectomy along with burning skin sensation (without the burn). I do take T3 along with T4 (100mcg T4 and 10mcg T3) and it hasn’t alleviated my arthritis pains and burning skin issues at all and because my levels are “in range” Im not entitled to increase unless I beg like a child and try to reason with crazy doctors ..... it’s just bananas the lack of care thyroidectomy patients get.
Yes it all sounds familiar so far.,I was hypothyroid with anti bodies off the scale prior to the op but I wasn’t regarded as hypothyroid by the medics at all and was not medicated. It was only when the goitre got so big and descended into my chest cavity that they were interested. Now that’s out of the way it’s all fine apparently on the magic pills.
Looking at all of the posts here it would appear to be a national scandal. What happened to “ do no harm”?
I can tell you it’s no better for those of us who have had our thyroids destroyed by RAI - it’s an absolute disgrace, they send you back to primary care to a GP who hasn’t got a clue and dismisses everything you say.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Advice about way forward after private blood tests...
Latest Blood Tests for comments
Total thyroidectomy
Confused & Frustrated after seeing GP about recent blood tests, would appreciate your thoughts please
