I've given up ranting, this just seems to be yearly confirmation of what we are up against (sadly most don't get as far as Endochrinoloy. My GP surgery recently asked me to confirm my Levo dose? They prescribe it each month so is it compliance? I replied 150mcg Levothyroxine and 10mcg Liothyronine (I've been trying 10mcg instead of 20mcg prescribed as I have lost weight) and I stated that I didnt feel overmedicated and neither T4 or T3 over range as I knew they were angling for the usual levo reduction that ends in me feeling more symptomatic.
So the letter above and a blood form arrives.
Comforting to know they can't even get the dose they've been prescribing for years correct and they add the good old put down at the end.
Confirm I get symptomatic, but then suggest we do it anyway, obviousley because they don't know what else to do. I doubt my TSH is going to move much, it was tiny the last time they reduced the levo to 125mcg but the T4 tropped dramatically. So not sure what that will tell them.
Let the fun and games begin.
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tzracer
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Refuse to consider reducing dose until had FULL thyroid and vitamin testing
Many, many patients find TSH will be suppressed on almost any dose of T3
Do you always get same brand Levo at each prescription
And same brand T3
What vitamins are you taking
When were vitamin levels last tested
Recommended that all thyroid blood tests 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)
T3 ….day before test split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Testing options and includes money off codes for private testing
Thanks for the reply, sorry I will one day update my profile, I know it helps. I have been around the forum 7 odd years.
I will try and refuse. I have lost a lot of body fat, now down to 14% acording to my scales (porbably not been this weight since my teens). I don't know if it was entirely down to diet change. I have had some stomach issues. A gastroscopy revealed a hernia and some gastritis. I was wondering if I had poor vitamin absobtion or a hpylori infection, but didnt test positive. I asked about low stomach acid at the follow up consultation and was told quite abruptly that testing wasnt a thing on the NHS.
I have accord on my prescription, had to argue (for 50mcg every other day) last time they went to 125mcg as the were giving me teva which I didnt like. I think I get the same brand T3 even though they send in unbranded bottle.
I'm prescribed 4500iu of vitamin D twice a week but I have been taking high doses (5000iu daily for months) but cant get results over 69, B12 is OK 600+ last time as I self inject every few months. I take occasionally a B-complex, quercetin, vitamin c, mushroom blend, Magnesium Citrate, zinc.
Feb 24
Serum TSH level < 0.01 miu/L (0.49 - 5.23)
Serum free T4 level 18.1 pmol/L (11.5 - 22.7)
Jan 24
Serum free T3 level 5.6 pmol/L. (3.5 - 6.5)
Nov 23
Serum vitamin B12 613 ng/L (211 - 911)
Serum folate 13.4 ug/L (> 5.4) highest its ever been
Serum ferritin 166 ug/L (15 - 300) 314 in 2012 and has declined since
Dec 22
Serum total 25-OH vit D level 69 nmol/L (50 - 250) been as low as 17
Thanks for the links.I take magnesium separately, usually in the evening. I had tried sublingual vit D but the company stopped trading. I have some vit D drops with k2mk7 to try. Will get tested first and try and guage dose.
I've been trying to work on my microbiome as I feel it's key to everything. Making kefir for years now and adding in pre and probiotics lately. Have started with HCL and pepsin with meals.
But the Summary of Product Characteristics does mention other pack sizes - none of which appear to be "bulk" which is usually much larger such as 500 or 1000 for other products:
6.5 Nature and contents of container
Tamper-evident polypropylene container with polythene lid, containing 28, 56, 112
This documentation still refers to Tertroxin despite the company de-branding years ago. That makes it appear that they could re-brand if marketing reasons supported the idea.
The PIL was updated October 2022. The SPC was updated September 2023.
However, I think the arrival in anonymous pots is due to the pharmacy's perception of rules on child-resistant containers. If the original Mercury contain is not obviously child-resistant, then they might see that as a more important factor than that it is a sealed pack from the manufacturer.
This is an issue we have seen for years. I suspect some members have just got used to it.
I think some said that they could not cope with the pharmacy's child-resistant packaging.
The pharmacy should always supply a PIL. Aside from anything else, identifying the actual products from tablet description alone is not satisfactory.
I suspect they tipped two 28-tablet pots into one bottle!
The white plastic drum definitely doesn't appear child-resistant.
Seems madness for Mercury to use one container which means the pharmacy have to transfer to another container - as standard practice - to ensure child-resistance! What a waste.
Pretty tight - even to the extent of being practically impossible for a young child to open - isn't enough. They have to be officially classified as child-resistant!
I went gluten free and very low sugar/carb for most of last year and lost weight but didnt really feel much better. I have the occasional gluten now without any major issues. Never dropped the dairy.
This is just the same nonsense I get from my Endo and I remind her that a lower dose doesn't agree with me and makes no difference to my TSH as we have proven in the past, so each review I refuse to lower my dose and she agrees 🤷♀️
It's the GP that keeps involving the endo (they freak out at the TSH). The endo doesn't like me much (tone of the last para) and hasn't seen me in years, but continues to prescribe the liothyronine.
Yep, same situation here Endo'd from afar when GP intervenes with a pointless TSH 'for their records' but did stave off the GP's requested reduction with this last sentence 😁
My endo bleats on about the last paragraph too (every zoom call) and made me lower my Levo one time. I did, and after 2 weeks hit the proverbial brick wall and could barely function. I put it back up immediately.
Are they trying to make you completely ill? FT3 has no relevance…. 😱
My TSH is really low on even 5mcg. I take 12.5mcg spread in 3 doses and my TSH is 0.01 and if it goes up to 0.02 I’m usually really poorly.
I have my check up tomorrow. Really looking forward to paying them their fee for basically doing nothing except writing my T3 prescription. I’m very grateful for this, so I put up with the b#llsh….. that goes along with it. But it is so tiresome 🥱
I get vitD with k2 spray from Betteryou. You can buy direct or get via other outlets often cheaper. (Answer to a comment between you and SD).
I hadn't been on the forum long when the endo said pointless testing T3 as it has such a short halflife. I was buying my own T3 in the end. Glad you were able to get your dose back up. I have some new d3 drops to try. But going to try and get tested first.
Was ok. He said “we” seem to have got your levels right. (Funny how I put my Levo up by 50mcg per week since we last spoke). And then he’s treating the person/symptoms not the numbers.
Asked if I had any heart palpitations (no). Still no comment on why my levels just drop out……….speak to me again in 6 months unless I have an issue…..
So at least I didn’t get told off for my 0.01 TSH - because that comment is getting boring 😂
I think it was the fact I just said “I’m on 125mcg 2 days and 100mcg 5 days a week”, in a very flat voice. Perhaps it convinced him he hadn’t updated his notes 😈
Unfortunately, the fun and games involve a detriment and risk to your health and well-being and, as such, I would be refusing any such drop in my dosage…
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T3 taken away, looking for a new source please :)
Endo nurse says I must take levo before my tests!!!
any one like me??
Endo NHS wait
