Basically the doctor who did my thyroid blood test a few weeks ago now says I am taking too much Levo and she wants to lower me from 100 x6 days a week/50 on a Sunday down to 75mcg. every day. She was going to send a new prescription through to Lloyds reflecting 75 as the new dose, so I told her I wanted to keep it as Accord and no other. So that’s what she noted down. Now I’m concerned because Accord doesn’t make 75’s so what on earth will I be sent? I wanted to stick to cutting a 50 in half, she said I couldn’t do that because nobody knew where or how in the tablet the hormone was distributed! Being caught off guard with the unexpected call my mind was a blank and it didn’t occur to me until afterwards to say the second half would be taken the next day.
This is all because my TSH is 0.03 [0.35 - 4.94] and has been levelled at that for the last few tests. She said she wants it to be at least 3.5 and says I am at risk of heart arrhythmia.
She is also concerned about my elevated liver enzymes and is going to send me for an ultrasound to find out what’s going on. I looked that up to find out what would cause it, I’m not a drinker, we even forgot to toast Christmas! On a page from the Mayo clinic it lists Thyroid problems as a possible cause.
Honestly, I don’t know what’s going on with my body at the moment, I seem to be falling apart at the seams! 😟
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Ellie-Louise
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Years ago with a TSH over 3 - you would have been diagnosed hypothyroid and started on thyroid hormone replacement.
Once on thyroid hormone replacement the TSH needs to be down under 2, probably under 1 and towards the bottom of the range.
Once on any form of thyroid hormone replacement the TSH is the least important reading and we must be dosed and monitored on our Free T3 and Free T4 blood test results.
No thyroid hormone replacement works well until your core strength vitamins and minerals are up and maintained at optimal -
Conversion of the prohormone - T4 - into T3 - the active hormone - can also be down regulated by inflammation, antibodies, any physiological stress ( emotional or physical ) depression, dieting and ageing :
Do you have any readings for inflammation, antibodies - and ferritin, folate, B12 and vitamin D as just being in a range NHS range somewhere is not optimal - and some NHS rages too wide to even be sensible ?
I know, but I’m waiting for a call from the hospital about removing this perishing skin cancer that has appeared on this NON-sunworshippers head. Where’s that come from!
Did they only test TSH or your other thyroid hormones like FT4 and FT3? Is your doctor dosing by TSH only (sigh)
You are right about Accord, Its the only brand I take as a named prescription, when I was on 75mcg I had the same dilemma, either cut a 50mcg in half, which is what I did, or alternate doses so one day 50mcg, the next 100mcg. That gives you an average of 75mcg.
However alternate day dosing doesnt suit everyone, some people are very sensitive to Levo and need a steady, consistent daily dose. You would need to try it maybe?
Truthfully I was quite restrained in my replies to her. She has just taken on my case and had already dropped my dose which I had argued against and ended with her agreeing to what I wanted to try. Now it seems she’s back on her high horse and doesn’t want it back on her if anything happens to me. Aggravating to say the least when I’ve been fine on a higher dose for years. I had to bite my tongue before I asked her how much she actually knew about thyroids. I wish I still had my old doctor, he knew things, he even used to mention ThyroidUK in conversation.
I have my fingers crossed re: the Levo and hope that Lloyds take notice of what I always have from them.
How do you feel on your current dose? If you feel ok, then refuse the change of dose. Or, agree a compromise dose. You're currently on 650 per week (average 92.8mcg per day). Gp wants to drop you to 525 per week, thats quite a big drop. A compromise might be 600 per week. How could you split that? Personally, I can't cope with different dosages on different days. Of course, you shouldn't be having any changes made simply on the basis of your tsh anyway. Perhaps you need to get your bloods done privately first before agreeing to any changes.
That’s just the thing, I’ve always felt ok until they muck my dose up. Dropping down to 75 and I start feeling tired earlier than I used to. Mentioning that yesterday, this doctor said that feeling tired had nothing to do with it…ha! Bl**dy ha! I know it does because when I put myself back up to the 100 at Christmas’22 without telling them I went straight back to normal again.
Well this doctor knows nothing about thyroid, either from experience or talking to patients, fatigue is a symptom that is one of the most common among thyroid sufferers.
Sounds like she's more interested in covering her own posterior than listening to what you say. Is it worth asking for a second opinion? At the end of the day its your life, health and well being at stake, not hers.
I think some members have made declaration to doctors stating they accept the "risks of over treatment" because of the improved quality of life it offers. As a competent adult that is your perogative.
Give the GP who want's to aim for 3.5 this list of references to read. Several were written specifically to advise NHS GP's so no argument about their validity~ all of them recommend GP's keep TSH below 2/2.5 in all patients on levo:
Yes, I’ve never seen her, only spoken to twice on the phone. But she seemed very with it the last time and agreed to what you suggested dose wise. Mind you I was insistent that time so I think she probably went along with it to keep the peace sort of thing. Yesterday it was almost as if she had changed overnight.
At the moment I am waiting for an email from Lloyds. I rang them 10 minutes ago about my prescription because they wanted it confirmed. I wanted them to send me Accord 50’s whatever the doctor had written.
They told me they could only supply what the doctor ordered and it would be Accord because that was specified. I asked how could they do that when Accord doesn’t make a 75mcg tablet? The person I was talking to told me she would have to go and speak to someone in charge about it and she would email me back.
Your doctor is dangerous in my opinion and I would get rid of her …. Cutting tablet in half is bad because the meds aren’t equally distributed… moron and she just said that to keep you from getting vocal about your concerns….. Thyroid disease causes so many problems for us and doctors choose to ignore this glaring fact …. I think they like us sick and begging for help!
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