Symptoms improving then coming back

[Fionagrace83]

Hi,

I was diagnosed with undrtactive thyroid a couple of years ago, started on thyroxine and initially felt some improvement but then the exhaustion and other symptoms returned. My levels were normal TSH 0.9 but my doctor agreed to increase my dose from 75 to 100mcg. After 3 weeks on the increased dose I felt amazing, my energy returned and all of my other symptoms improved. 4 weeks later and I'm feeling terrible again.

I asked my doctor to refer me to a specialist at my last appointment but he said my levels and vitamins are all in range so my other health problem (kidney disease) must causing the problems.

Has anyone else experienced this? Surely if it was unrelated to my thyroid I wouldn't have noticed an improvement with increased thyroxine? Is it possible I need a dose increase again even with TSH at 0.9?

Thanks

[SeasideSusie Remembering]

Fionagrace83

he said my levels and vitamins are all in range

What are these results? Just because they're in range doesn't mean they're optimal. If you don't already have one, pop along to your surgery and ask at the reception desk for a print out of your test results - don't accept verbal or handwritten results, you need a print out and the reference range needs to be on there as well as the result, eg

TSH: 2.5 (0.2-4.2)

TSH alone is not a good indicator of thyroid status. You need

TSH

FT4

FT3

Thyroid antibodies if not already tested

Only then, when you've seen your FT4 and FT3 results with their reference ranges, can you possibly know if the dose of Levo you are on is adequate.

[Marz]

Hi and Welcome. I see you joined back in February so hopefully you have been reading some of the posts and replies. Probably all very confusing but daily comments here involve feeling better and then not so. Do you have your recent Test results with ranges for TSH - FT4 - FT3 and Anti-bodies TPO and Tg ?

Yes everything can be in range - but that does not mean wellness - what were the actual results that were declared 'normal ? ' Was your B12 around 500 - Ferritin and Folate mid-range ? and VitD at 100 ++ You are legally entitled to have copies of all your results with ranges - and surgeries should now have on-line records so worth checking. For results you may need enhanced access so take along some ID when you next go ...

Do you know your FT3 level - as I have read there is a connection between low thyroid and kidney problems. T3 is the Active thyroid hormone needed in every cell of your body.

How do you take your meds ? Are you taking any other medication that could be affecting your Levo ? It is wrong for your GP to dose by the TSH once you are on medication - the most important tests are the FT4 and the FT3 - so it is then be possible to see if you are converting well. Rarely done in the NHS so you may have to have them done privately through Thyroid UK - see link below - Click onto About Testing and the companies will be revealed.

thyroiduk.org

[greygoose]

This is an absolutely normal procedure. When you first start levo, you start to feel good, then the symptoms come back, because although your body welcomed the extra hormone, the pituitary quickly sensed that it wasn't enough. You increase, and the same thing happens. It just means you need another increase. And, you keep increasing your dose until the symptoms stop coming back. That's how it works. Unfortunately, doctors have no idea about any of that. They look at the TSH, see it's in-range, and tell you should be well, now. It never occurs to them that you might not be well, and that you still might not be on the right dose for you.

[Greekchick in reply to greygoose]

This description is dead on - and exactly my experience. I couldn’t articulate what I was feeling but this is it exactly - feel great then lousy -and repeat !

Makes me feel better about keeping my increases of meds going - thanks for posting!

[greygoose in reply to Greekchick]

You're welcome.

[Hidden in reply to greygoose]

Fionagrace83 That is exactly what I was going to say but greygoose said it first!

When I started Levo, and with every increase since, I felt much better after a week or two, then a while of feeling OK, then a gradual decline, though not quite down to the previous baseline. Your body needs time to adjust to each change until hopefully you are stabilised on a dose that suits you.