Hi, can I ask your advice. I've been diagnosed hypothyroid since Oct 24, now on 75 mcg vencamil. Just had result back from 10 weeks blood test, taken yesterday 9 am, fasting, no levo, only TSH tested, gone from 2.7 last time to 0.15 miu/L (0.3-4.5) this time. GP rang to say I had to reduce down to 50mcg and retest in 6 to 8 weeks.
I asked her about hashimotos as I'd read here it can cause swings in TSH initially and she agreed to have antibodies tested.
Just had a phone call this morning I can't be tested for antibodies when I'm taking levothyroxine, so stick with the reduction and retest 6 to 8 weeks for now.
I'm still getting symptoms, cold, shivery, lethargic which would indicate hypo.
Any advice please
Susan
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Blackcat122
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Oh dear, oh dear, oh dear. Where do they get these rediculous ideas! There's absolutely no reason why you shouldn't be tested for antibodies when on levo. Thyroid hormone replacement has no effect on antibodies, there's no connection. She probably just doesn't want to spend the money on the test!
What's more, she shouldn't be dosing by the TSH! It's a very unreliable guide to thyroid status, especially when taking thyroid hormones and when it gets below 1. Highly unlikely that you are over-medicated on only 75 mcg T4.
Is there another doctor you can see that might possibly have a clue?
Hi greygoose. Thanks for your quick reply. Unfortunately my doctor is the head of the practice and considered one of the best, so I'm stuck with her. Why oh why do they tell us lies?
Well, it may not be lies. She may just be very ignorant. Any chance of moving to another practice? If she's the best they've got, there's not much hope, is there.
Then you have to educate her. Gently and politely but refuse to reduce your dose on the basis of one isolated TSH test. She's there to advise you, not dictate to you - although she probably doesn't know that. Your treatment should be a joint decision, and there's no law that says you have to take her 'advice'.
well , you 'can' test for antibodies when on levo , the test still works just the same, levo or no.
but yes , it's all about money , surgeries are a business , so if already started on levo the antibody result doesn't change anything about the treatment plan going forward , so they won't spend the money .
if not already on levo and they are trying to decide whether to start it or watch and wait eg with borderline / unstable TSH / fT4 levels, then a positive antibody result is helpful to make the decision , so in that case they will spend the money on it .
Thanks tattybogle for your reply.What surprised me was my T4 wasn't checked as my TSH was out of range. That may have been a bit more helpful in interpreting the results.
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
Monitor My Health (NHS private test service) offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In days before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 if last test result serum B12 was below 500 or active B12 (private test) under 70
Hi SlowDragon Strangely I didn't feel better on 75 mcg vencamil I still had a lot of the symptoms of hypothyroidism, coldness, internal shivering, muscle weakness, tiredness, and was expecting to put in a request for an increase to 100mcg, never thinking my TSH would go down so low
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)
Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.
Some people need a bit less than guidelines, some a bit more
Guidelines say EVENTUALLY likely to be on approx 125mcg
request Vitamin D, folate, ferritin and B12 levels are tested now
And request 75mcg dose is reinstated and FULL thyroid levels are tested 8 weeks after being on constant unchanging dose and brand of levothyroxine - TSH, Ft4 and Ft3
ALWAYS test early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Welcome to my world. Annual review 'borderline' so retesting in 6 weeks which is like Groundhog Day so retest booked for the first appointment and I will come off all supplements for two weeks beforehand which last year, after taking advice from this forum, resulted in a better outcome. Luckily the senior practice GP has an understanding of hypothyroidism - he believes that if I feel and function well on the dose then it obviously works for me and usually over rules any suggestion by my 'assigned' GP to reduce it again.
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