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Thyroid

My dose of thyroid medication changed twice in a year

Started 10 January 2025 · 24 replies · 272 hearts · read 5.3k times

MinnieDoncaster, UK · 10 January 2025
1.5 years ago

A question rather than an update: My dose of thyroid medication changed twice in a year

I have avoided asking about this for six weeks out of pure embarrassment.

Something is going on and I would like to know whether other people have had it, mostly so I know whether to raise it or wait it out.

I have read the guide on this and it covered the ordinary version. Mine is not quite the ordinary version and that is why I am asking.

I would like to hear timescales more than remedies. Knowing how long other people's lasted would turn this from an open-ended thing into a bounded one.

Not after remedies particularly. Mostly I want to know whether this is ordinary and how long it went on for.

91

ÖzlemIzmir, TR
#1

The timing of when I take mine relative to everything else mattered, and a pharmacist sorted it out in one conversation after months of me guessing.

14

PerlaManila, PH
#2

My levels shifted and needed rechecking, which my endocrinologist had told me to expect and my GP had not. Worth knowing in advance.

6

GusStirling, UK
#3

What Perla described happened to me too, in a slightly different order.

I had assumed tiredness was one thing and it turned out to be the other, and the only way anybody found out was by testing rather than reasoning.

10

MiraFacilitatorRotterdam, Netherlands
#4

Thank you for writing something this unglamorous down. Half this circle has had it and almost nobody says so, and you have just made the next thread easier for somebody.

17

BryonyMalvern, UK
#5

The absorption question was the one I could not get a straight answer to for a long time, and my endocrinology nurse eventually gave me a very clear one.

13

PerryCardigan, UK
#6

Coming back to what Mira wrote further up, because it is the bit I keep thinking about.

My results have been stable throughout and I am told that is common. I mention it because the threads that get written are usually the ones where something changed.

11me too 4

PersisBristol, UK
#7

Grateful you posted rather than kept it to yourself.

11

LlianCarmarthen, UK
#8

I keep all my results in one document with the dates and the reference ranges, and it has been worth every minute of the hour it took to build.

8

MaudGhent, BE
#9

Reading Perry, I recognised more of that than I expected to.

What I would flag is that a new symptom is worth mentioning to both teams rather than deciding for yourself which one it belongs to.

9

GaelanInverurie, UK
#10

I found a nurse-led clinic that handles the reviews and it is far more thorough than any GP appointment I have had on this.

14

Bryn MNeath, UK
#11

What confused me was that two labs used different reference ranges, so a number that looked worse was actually the same. Check the range, not just the figure.

8me too 1

PrueChester, UK
#12

Nothing to add except that I am glad this thread exists.

11

GrizelKirkcaldy, UK
#13

Gently disagreeing with Bryn M, or rather adding the other half of it.

What I would say is to get a baseline set of bloods before starting if you possibly can. Mine were eight months old and it made interpreting the later ones much harder.

7

MinnieDoncaster, UK
#14

My GP rechecked at twelve weeks as a matter of routine and adjusted, and the whole thing was much less eventful than I had braced for.

9

ÖzlemIzmir, TR
#15

Minnie — yes, and the bit that took me longest to accept was the next part.

Something worth asking: which specific tests are being run. Mine had been getting one for years and the fuller panel answered a question that had been open for ages.

10

PerlaManila, PH
#16

The symptom overlap is genuinely difficult. Tiredness, cold, mood, hair — all of those belong to both stories and none of them tells you which.

12me too 5

GusStirling, UK
#17

I would say do not adjust anything yourself on the basis of how you feel. I nearly did and my nurse was very clear about why that was a bad idea.

10

TansyLudlow, UK
#18

Perla, thank you for that. It gives me somewhere to start from.

What helped was one clinician taking ownership of the whole picture. Before that I had two people each managing half of me.

13

BryonyMalvern, UK
#19

That is a kinder way of putting it than I have managed about myself.

13

PerryCardigan, UK
#20

Gus has already said most of this and I want to add the one part that was different for me.

Nothing here is medical advice and this is a subject where that matters more than usual, because the numbers genuinely need somebody qualified reading them.

15

PersisBristol, UK
#21

Two sets of bloods and two sets of questions, and getting the two teams to look at the same piece of paper was most of the work.

12me too 5

LlianCarmarthen, UK
#22

Reading and nodding. Nothing to add, and I wanted you to know somebody had read it.

9

MiraFacilitatorRotterdam, Netherlands
#23

Stepping in because a question about another medication has come up. That is a pharmacist question and it is genuinely one they will answer properly and quickly.

24

GaelanInverurie, UK
#24

I did not know until this circle that a recheck at a set interval was standard. I had been assuming somebody would call me if something looked wrong.

6