Confused

[foamfollower]

Just had a message from my GP surgery and as my TSH is 0.13 they want to lower my dose from 75 to 50. What do I do?

[Jaydee1507 Administrator]

How do you feel?

Your FT4 is low still which means its likely your FT3 is also low. You are not over replaced just because your TSH is very slightly below range. Your free hormone result that you have (theres no FT3 tested) is well within range.

You can refuse to chage and ask to retest in 6-8 weeks time. Mean time start working on your vitamin levels as per previous post. healthunlocked.com/thyroidu...

You can use this passage taken from the NICE guidelines to back yourself up.

The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :

nice.org.uk/guidance/ng145

"Your responsibility”

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. “

nice.org.uk/guidance/ng145

[1tuppence]

First question...how do you feel? Do you feel well on 75?

My response would depend on those answers. If I felt well, then I'd refuse to drop my dose without seeing what T3 and T4 were doing.

[Buddy195 Administrator]

TSH. 0.13. (0.27- 4.2)

Free T4. 16.8 ( 10 - 21)

Folate 3.7 (1.5 - 20)

B12. 324. ( 180 - 2000 )

As per advice from SlowDragon 2 days ago, I would test privately for FT3 for a complete picture of your thyroid health. I would refuse to decrease Levo on TSH alone, as your FT4 is well within range.

[SlowDragon Administrator]

Refuse to reduce dose …..Ft4 is well within range

Work on improving low B12 and folate levels

Get vitamin D tested and improve if also low

(very likely if not supplementing)

If GP says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....

The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :

nice.org.uk/guidance/ng145

"Your responsibility

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "

[Singwell]

If you feel well I'd be inclined to follow advice of experienced members here. My own TSH was close to the bottom end of the range in December and I'm noticing changes I don't like - palpitations, anxiety etc. Could be unrelated as I have previously has heart Arrythmia but I got checked put anyway. Test results tomorrow. Maybe just flag your concerns with GP and say you'd like to report in a few weeks time. Get your concerns on record.

[foamfollower in reply to Singwell]

Hi Singwell, I also have palpitations but I had these anyway plus I have bradycardia. I had an ECG which came back as normal and my pulse was 64. But most of the time it's not. I recorded my heart rate for 2 weeks at different times of the day which clearly shows a pattern of heart rate around 50. I showed the surgery but because the ECG came back normal they don't seem bothered 😕

[Lovecake]

That could be too much of a reduction and make you feel dreadful. I fell for a that one years ago, before I joined here, and it took me ages to recover. I went from 100 down to 75. Then eventually 5 x 100, 2 x 75 (completely different now).

Did you have the blood taken at around 9am fasting? That can make a difference with your TSH too.

All the other advice is as usual, the best.

[foamfollower in reply to Lovecake]

I didn't take my Levothyroxine 24 hours before my test which was just after 9am. I also fasted.

[Lovecake in reply to foamfollower]

I’d ask to stay on my dose and retest in 3 months.

[serenfach]

Refuse the dose change. Tell them you want to up your folate and other vitamin levels to help your thyroid. They wont know that having optimum vitamins helps the thyroid.. I preface each encounter with "As you know Doctor..." They dont know, but will never admit it, but it puts them on the wrong foot.

"As you know Doctor, the T3 test is the most important one, and until we have that number, I wont change my dose as that could be dangerous".

Also read this and maybe send it to them:-

thyroidpatients.ca/2019/03/...

Good luck!