GP wants to reduce my Levo...πŸ™: I did post... - Thyroid UK

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GP wants to reduce my Levo...πŸ™

janey1234 profile image
janey1234
β€’27 Replies

I did post recently my Blue Horizon bloodtest results to see whether or not you, the more knowledgeable folk, think I needed to reduce, stay the same or increase my dose.

Alas I didn't get a reply on that part of the question so I hope you won't mind me posting again. I have also had GP bloodtests this week (TSH & T4 only) and have been told to reduce my dose to 100mg (I assume he has just looked at the TSH). I can't get an appointment to discuss with him for another 3 weeks so thought I might write a letter instead to save time (if you agree I shouldn't reduce)

I currently take 100 /125 Levo alternate days.

Blue Horizon results....

TSH 0.23 (0.27 - 4.2)

T4 TOTAL 106.7 (64.5 - 142.0)

FREE T4 16.55 (12 - 22)

FREE T3 4.29 (3.1 - 6.8)

GP (NHS RESULTS)

TSH 0.16 (0.35 - 5.5)

FREE T4 14.8 (10.0 - 19.8)

All of my symptoms from last year have subsided (thank goodness), all I have is a lot of muscle and joint pain at the end of the day and when I sleep. Not sure if this is remaining thyroid symptom or something else. I'm going to get that checked out though as other half wonder is it's arthritis.

I assume that my GP is going to say about heart risks with an uber-low TSH. I know somebody else asked today for the link that says otherwise (I am following that post for the link to be given)

So my question is, do you think I should reduce, stay the same (100 / 125 alternate days or ask for an increase?

Thank you...again ☺

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janey1234
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Hoxo profile image
Hoxo

Your free T3 and T4 results are not over range or even at top of range so if it was me and I felt ok I wouldn't reduce my dose based on TSH test.

janey1234 profile image
janey1234 in reply to Hoxo

I'm sure the GP has just looked at the TSH and that's his basis for insisting on a reduction. Thank you for your reply

greygoose profile image
greygoose

You're FT3 isn't even mid-range. Most people need it up the top of the range to be well. You actually need an increase. And, it doesn't matter how low the TSH goes as long as the Frees are in range.

janey1234 profile image
janey1234 in reply to greygoose

Thank you @greygoose I am sure the GP is only looking at the TSH. He just told the receptionist to ring me and tell me to reduce to 100. No explanation and if I want to discuss it'll be a few weeks away.

Would you suggest 125 everyday (instead of 100 / 125 alternate days) and a retest in a other 8 weeks time?

And...

On the assumption he says a low TSH will lead to heart problems, do you have the link that I can print out that I can show him?

I'm going to put a letter together to state my case then for an increase.

Thanks again x

greygoose profile image
greygoose in reply to janey1234

I think 125 mcg a day would be a good start, yes.

I don't have a link, no, but there are such links. Why not put up a new question, asking just that. :)

janey1234 profile image
janey1234 in reply to greygoose

I am already following MaFerrett who posted the same question yesterday but as yet hasn't had a reply with links. I will post seperately tomorrow with the same question if nobody replies.

Thanks again greygoose

greygoose profile image
greygoose in reply to janey1234

You're welcome. :)

MaFerrett profile image
MaFerrett in reply to janey1234

Please do post question again! ☺

janey1234 profile image
janey1234 in reply to MaFerrett

I think I have found the links...will post them later today 😊

janey1234 profile image
janey1234

Thank you for replying.

Not heard about Levo causing pain. How would I know and what would I do?

I'll email Louise right now. ☺

janey1234 profile image
janey1234

Do you have any links that are recommended so that I can learn more please?

My husband think it's arthritis but I'm not convinced and thinking about it I didn't have this pain prior to starting Levo. I had the fatigue, weight gain, terrible brain fog but not pain. Definitely need to look into this further, you may have the answer...thank you x

UrsaP profile image
UrsaP in reply to janey1234

janey1234 Levo caused me increasingly debilitating fibromyalgia, migraines and CFS. Built up gradually over 20 years. All disappeared, within days,when I stopped T4 for T3 only. (reoccured several times when tried T4 again)

Of course GP's never, to this day, accept that it was the T4 causing it...if they did they would have to do something about T4, like report it! I tried reporting it on the Yellow card system, recently, as I did not know about YCing until recently - not sure when YC introduced.

That said I am now finding I am getting odd leg and feet pain. Which I'm wondering if it is the T3 or the brand of T3 causing it. Always seems to be something!

Good luck and don't let your GP bully you. Refuse to reduce - why should you if you are feeling well? We are all different in our needs. I always felt better with my THS = 0.01 even before T3 only.

Could you see a different GP in the surgery, and sooner?

janey1234 profile image
janey1234 in reply to UrsaP

Thank you for replying. This thyroid lark is a flamin' nightmare...I hate going to my Doc's as it is, let alone having to 'teach' what I have learnt and fighting my corner. I will see how I get 're current dose and take the pain but from there.

Have a happy weekend x

UrsaP profile image
UrsaP in reply to janey1234

It is a nightmare janey1234 but don't be put off. There is help out there and hopefully you will find levels that suit you. And unfortunately it will be a case of knowing your stuff and fighting for what your need. One step at a time.

All the best and happy bank holiday weekend to you too.

mythreecats profile image
mythreecats in reply to UrsaP

just seen your post..you probably wont see this as its 2 yers ago....think im currently in same boat as you with levo...ive just posted for help today....i was really hoping my endo would do a trial of t3 for me but im so dissappointed with the consult...see my post.....may i ask if you get your t3 from gp or self supply.....i never ever wanted to be in this position but im so disillusioned by them all....theyve seen me flounder for 4 years...sorry this is so late and apologies if you dont wish to reply

UrsaP profile image
UrsaP in reply to mythreecats

Hi and yep seeing your reply. I am currently in NHS but they are trying to call me for endo appointment after 9 yrs of stability on T3 mono. I see no need as I know the only reason they are recalling me is to withdraw my T3 and I have no faith in the system that they will accept that 16 yrs on T4 mono, and a further 3 on combiner's - all failing will be enough to leave me on it. They want us all off T3. The NICE draft won't entertain T3.

mythreecats profile image
mythreecats in reply to UrsaP

i hope you don't get the t3 removed...thanks for replying....today this forum has helped me more than an dr has...greygoose has replied to my post and ifeel a bit braver asking this awful endo about T3

UrsaP profile image
UrsaP in reply to mythreecats

Good luck to both of us and all in the same sinking boat!

Lilylui profile image
Lilylui in reply to UrsaP

Hope you see this Are you still on T3? I am I U.K. and just on T3 but endro doesn’t want me on it, levo causes palpitations for me, just wondering how you got on

UrsaP profile image
UrsaP in reply to Lilylui

I thought I’d replied to you earlier but the whole thing must have dropped. Short response - cos not writing it all againπŸ˜€ Stick to your guns re your T3. Ask your endo for a written account of his reasoning and justification for wanting to stop your T3? I thought there was something that said they can’t just stop it. I didn’t think you had to agree to change meds if a) stable and b) no valid reason.

An endo responded to my GP saying to stop it after I was on it so long might cause problems.

Would your endo be willing to commit, in writing, to being held responsible for adverse effects on your health caused by stopping your T3?

What alternative is he possibly suggesting if T4 causes you palpitations?

Ask for all his reasoning and justifications, treatment plans, and confirmation of his responsibility, and any evidence to back up his proposal, so that you can examine it (with your solicitor! LOL) and to allow you to make an informed decision.

Yes I am still on T3. Not impressed with the endo, not met him but Jekyll and Hyde. Will not be seeing him if I don’t have to. He did agree to leave me on T3 for now, two years ago. 2 end’s since 2018 left me on it. I’m hoping that counts for something should an argument arise.

janey1234 profile image
janey1234

Ok, thank you....I will have a look and maybe post again 😊

SlowDragon profile image
SlowDragonAdministrator

Have you had vitamin D tested?

janey1234 profile image
janey1234 in reply to SlowDragon

Sept last year I was about 115 and I spend every day working in gardens so I assume I am still ok. 😊

Based on free T4, I'd ask for an increase. You might want to shpow your doctor a copy of the Drt Toft Pulse article explaining that some people need suppressed TSH and even over range Ft4 to feel well. You can get it from louise.roberts@thyroiduk.org.uk

janey1234 profile image
janey1234 in reply to Angel_of_the_North

Just got it...thank you xx

JS33 profile image
JS33

I think when a GP sees suppressed tsh ,his immediate concern is not for you having a heart attack ,it is that if he leaves you there , with a tsh lower than the NHS recommendations , if you have a heart attack due to any other cause, bang goes the years spent in medical school. πŸ˜‰

janey1234 profile image
janey1234 in reply to JS33

Lol

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