I had been feeling very tired for a few months so I thought let’s check my thyroid had a Medichecks test done and came back as follows spoke to my gp and was advised they couldn’t accept this result so had to do one of their own !
NHS TEST:
TSH 4.51 ( 0.1-5.00)
Free T 4 18 ( 12.0-23.0)
From the GP NO FURTHER ACTION within normal range !!! Taken within one week of each other.
Am I going mad by trying to get my levels below two but not one of the gp’s think it’s necessary both tests were taken 24 hours after medication was taken.
I don’t know whether to pay to see a private specialist or keep trying with my local GP’S
Thanks in advance for any advice
Clare
Written by
Bunty0604
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Admittedly some doctors don't care, but sometimes it's ignorance of how to treat. It looks like your GP needs reminding of the aim of treating a hypo patient, ie getting the TSH below 2:
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
Also, Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional publication for doctors):
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).*"
*He confirmed, during a talk he gave to The Thyroid Trust in November 2018 that this applies to Free T3 as well as Total T3 and this is when on Levo only. You can hear this at 1 hour 19 mins to 1 hour 21 minutes in this video of that talk youtu.be/HYhYAVyKzhw
You can obtain a copy of the article which contains this quote from ThyroidUK
Email : tukadmin@thyroiduk.org
and ask for the Dr Toft article from Pulse magazine. Print it and highlight Question 6 to show your GP.
There's no guarantee that seeing a private specialist will result in an increase in Levo, but you'd likely have to go over to private prescription, your GP may not act upon any suggestion from a private doctor.
Time to make some noise perhaps, or you could just buy your own Levo.
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)
Glenmark or Aristo (100mcg only) are lactose free and mannitol free. May be difficult to track down Glenmark, not been available very long
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Accord only make 50mcg and 100mcg tablets
Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord doesn’t make 25mcg tablets
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
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
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
REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex
There’s a difference between adjusting dose to get well and adjusting dose to get test results in range. Patients are better at the former, doctors only good at the latter.
Doctors are worried about being prosecuted for wrongful treatment so relax once test results are in range. Their job is done. Many then try to explain remaining symptoms in terms of lifestyle choice (e.g. working long hours, lack of exercise, being overweight) s / time of life (e.g. empty nest, menopause, depression, old age) 🙄
I’m sorry if this sounds cynical. In my experience the only way is to take charge yourself. Follow your instinct. If your instinct tells you that you need a higher dose then raise it a notch and see how you feel. Then share the outcome with your GP. You may be surprised that the sky doesn’t fall in. GPs can’t successfully manage thyroid conditions without our input. But they’re very busy and if you don’t take charge yourself the only GP you’ll see is the GP that’s adjusting to the test. There’s a GP inside waiting to get out when you open the door for them.
You may find that if you raise the dose, you feel better and the test results don’t even change
I often wonder why doctors won’t accept blood test from and accredited lab it’s absolutely the dumbest thing I have ever witnessed…. My own doctor had to retest my Iron because she didn’t like the test results from the same lab company who I paid out of pocket for 2 weeks earlier… insane!
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