Dr wants to lower Thyroxine again !!! - Thyroid UK

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Dr wants to lower Thyroxine again !!!

Hi all, I have just had my yearly blood tests done at GP surgery.

TSH 0.11( range 0.30 - 5.50)

T4 18.2 (range 11.5 - 22.7)

Obviously no T3 taken as usual but last T3 from Medichecks in February 2019 was 4.41(range 3.1 - 6.8)

I have a GP appointment next Tuesday and this will be to lower my thyroxine dose of 100mg per day. I had the same argument last year as well. I have had 7/8ths thyroid removed over 30 years ago but get treated as if I have a part functioning thyroid when actually it's not functioning at all and hasn't since I had operation to remove. Does everyone have to do battle with their Doctor?

Thanks

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I get various GPs in the practice suggesting I reduce dose but I simple say "no I'm fine where I am thanks" and my usual GP is happy with my results, my tsh is 0.04 and T4 21.7, T3 varies between 5-6.

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Thank you for your reply. That's what I have said in the past, GP doesn't like it at all but I stand my ground- just so fed up of battling to keep well.

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What I did to convince my gp was to prepare a little paper and guide him through it.

Take something like this

TSH 0.11( range 0.30 - 5.50)

FT4 T4 18.2 (range 11.5 - 22.7)

FT3 not tested

Low TSH but FT4 is only 59.82% through the range so not over-medicated based on Ft4 result.

Without a result for Ft3 we do not have the full picture. If Ft3 is over the range then patient could be described as overmedicated. If Ft 3 is within range then the patient is not overmedicated.

Patient requests that FT3 along with TSH and Ft4 be measured to check levels of active hormone available before any alterations are made to levothyroxine dose.

Yes we all have to fight with the GP and endo sometimes. I am lucky to have a listening gp who admits he knows only a little and is happy for me to guide him.

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How good is your idea - I will certainly take a letter along with me as you suggest. My T4 at one time was 21 and I felt quite good but my results seem to go up and down like a yoyo on same dosage? I think I could do with an extra 25mg of Levo but got no chance of that. All the Dr interested in is TSH- same old

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Some folks need their FT4 at the top end of range to get enough converted to adequate levels of Ft3. you need to get that across.

How is your weight - does it go up and down? I have twice been on 100mcg levo. My results were different - the obvious change was 14lbs of weight. I know there is a link between dosage and weight.

I had an awful experience with an arrogant GP who knew nothing but acted as if he knew it all. That taught me 2 things:

*take your points all laid out and present them

*never see that arrogant gp again!

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Yes weight does go up and down. I have never had to sort ever before thyroid removal, if I want to drop weight I have to eat no more than 1000 calories a day - starve myself basically and hopefully lose a pound a week? I will definateky do as you suggest, see what Dr says.

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Can I ask how you work out the % of my results please.

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There is an online calculator which some use but I am a teacher!

* Calcualte the difference between the numbers in the range (22.7 -11.5 = 11.2)

* Calculate how far above the bottom of the range your result is (18.2 - 11.5 =6.7)

* Calculate the percentage (6.7 x 100 divided by 11.2 = 59.82%)

* Check if your answer is reasonable (Is my blood result over half way through the range but not much further? Does Nearly 60% seem about right?)

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Thank you so much, I understand how to work it out now - great explanation

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Glad you understood. If you find out your Ft3 result you use the same method to calculate how far through its range you are. Your Ft3 should be over 50%through its range. Many feel better with it 70% or higher. If your Ft3 is much lower through its range than your ft4 is through its range then you are looking at a conversion problem. For example my ft4 is 60% through its range but my Ft3 is only 16%through its range.

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That's fantastic information - I will work out my % before seeing the Dr. The more reason I have for not reducing my dose the better.

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Here’s the calculator 🤗

chorobytarczycy.eu/kalkulator

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Thank you very much for the link.

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Your doctor is only judging on TSH and not taking account of your symptoms. He will make you ill. I have posted this recently, so apologies if you have read this before, thought it might help - along with the studies people post on here about why dosing by TSH doesn’t work - you should be able to search and find them and some good ones were posted only recently. You could also look at my past posts about what my endo has said about TSH and dosing as this one is focused on bone density.

I see a private endo, which I know puts me in a privileged position and I’m sorry that isn’t possible for so many on here. He is a thyroid specialist. I’m on Levo only.

My TSH is well below range and vanishing - my T4 and T3 in range. He sent me for a Dexa scan and my score for my hip on the FRAX scale was right up against the area of needing treatment for osteoporosis (which I told him I didn’t want) and my spine well into osteopenia.

He didn’t blame my TSH at all - after all it’s only been low for a few months - hardly time for my bones to crumble. Instead, he pointed to the blood test that showed I had just about no oestrogen, (I’m post-menopause and never wanted HRT), as the obvious culprit and the fact I’ve had a low BMI all my life. Although I’ve always been active and exercised a lot, my chosen exercises, including lots of swimming which I have done for over 30 years, is not load bearing so hasn’t ‘built bone’

He suggested supplements and load bearing exercise to help me build my bones - and advised my GP about this too. Never once did he suggest I make myself ill by reducing my thyroid medication. The other thing he has said in the past about my TSH is ‘It’ll probably never go up, let’s just ignore it.’ Magical words - but I was severely hypo (probably for a long time) and he thinks my TSH has lost the plot as a result. A bit of T4 and it finds it overwhelming! I also have hashis, which makes the TSH unreliable as the hormones from what’s left of my own wizened thyroid wax and wane. Therefore, TSH is a useless measure for anything other than diagnosis. For treatment an endo should know he/she needs to look at T4 and T3 to get a complete picture.

I also discussed with him the fact that I’d rather risk a fracture than live a half life on too little medication no matter what. But he is not concerned with the low TSH.

They really need to start treating us like adults on this kind of thing. Not only are we clever enough to know that a suppressed TSH with the T4 and T3 in range is not over-medication; that over-medication is not the same as being hyperthyroid; that suppressed TSH in a hypo patient is also not being hyperthyroid; that being hyperthyroid is a totally different condition where your own thyroid over produces T1,2,3 and 4; that over-medication has obvious (and unpleasant) physical symptoms that we would recognise (and GPs can easily test for, like heart rate, tremor etc), but also, that bone density is affected by many, many complex biological processes (and genetics) and is something we can work to improve.

We are also clever enough (brain fog or not) to assess what we are willing to risk and what we are not, for the sake of health.

🤸🏿‍♀️🥛

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Absolutely excellent summary of the position. Should be standard reading for trainee medics (no point in expecting practising doctors to accept it as they’ve usually made up their minds about the subject.... which are set in stone!).

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That's it exactly - it's like a Little Britain sketch at our Drs - computer says No !!

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Thank you so much for your reply and telling your story. Lots if useful information for me to research.

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Excellent post, MissGrace ! 👍

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Forgot to add that GPs are not meant to ask for FT3 to be tested. My GP explained that they cannot prescribe T3 so it has been decreed that they cannot measure T3 either.

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Our surgery/lab automatically test T3 without being asked.

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How good is your GP - your very lucky. I have to pay to get my T3 from Medichecks

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Mine used to because Southampton Hospital were doing research or something at the time.

Now reverted back to TSH only. Even my GP says it's about as much use as a chocolate ashtray on a motorbike once you are on treatment and readily accepts my BH results (if they remember to upload them to my file! 🙄 ).

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Unfortunately my GP thinks TSH is the only result to look at and calls me in every time to tell me it's under range.

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I have never had T3 tested by GP in over 30 years.

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I wonder whether this kind of protocol is applied to other medical conditions.. eg No point in testing for waning brain function as there’s no cure?

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My husband has injured his knee, twisted it getting out of the car and injured his hamstring. He is 66 years old. First thing GP said was that he needed to see a consultant but they would probably put it down to age?? Just about sums it up really.

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I think it depends where you are. My GP requests T3 and the lab tests for it. 🤸🏿‍♀️🥛

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I also keep a spreadsheet of all the blood results since I was diagnosed. Last time I saw my endo he said they were a great example of why my TSH was unreliable. When the T4 produced the same reading (and the T3) as a previous test, the TSH varied from 14 to 4.8! 🤸🏿‍♀️🥛

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I only have results for the last 2 years, I may speak to Dr receptionist and ask for results from previous years. My TSH tends to be below range and T4 varies from 16 to 21? No idea why, same dosage of Levo?

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Do you do blood tests consistently the same way?

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Yes same way each time.

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I think the variation shows treating by blood results when on Levo is an unscientific lottery and treating by symptoms makes lots more sense! 🤸🏿‍♀️🥛

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I totally agree with you - just need GP to agree now.

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What time of day did you have blind drawn for the test. TSH is at its highest early in the morning.

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Had blood drawn 8:50am as per advice from the forum. No Levo f9r 24 hours before blood draw.

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I was on 100mcg levothyroxine for over 10 years then got a new GP who said I was on too much and put it down to 75mcg that was 2 months ago and boy have I piled the pounds on! And everything is such an effort now! Got an appointment to see him in a few days, going to ask him to put me back up to 100mcg

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So sorry your struggling. I have been on as much as 175 of Levo and was on this dose for about 10 years. Gradually the Dr has reduced me to 100. Those were the days before I knew about this site and had no idea of my TSH/T4/T3 - it certainly helps to be aware of your own blood results and to know what you need to have a decent quality of life. I wish you well with your Dr appointment.

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It is a constant struggle :(

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