My thyroid numbers have gone the wrong way and nobody can tell me why

Started 15 July 2025 · 8 replies · 351 hearts · read 3.1k times

MinnieDoncaster, UK · 15 July 2025

about a year ago

Doncaster. Thyroid, then this, two sets of bloods, as it says on my profile — and this is the post where the two sets of bloods stop being a joke.

Background: underactive thyroid since 2017, on replacement, stable for years. Same dose since 2019, bloods every twelve months, never a problem, never a symptom I could not explain.

Since I started this in September, my TSH has climbed at each of the last three tests. Not into anywhere alarming, but out of where it has sat for six years, and moving in one direction each time. Alongside that: the heavy tiredness, cold hands, and a stretch of hair shedding in the spring which I had assumed was the medicine and now do not know how to attribute.

What my GP has done: repeated the test, then repeated it again, and has now adjusted my replacement dose and wants me back in eight weeks. She was thorough and I have no complaint at all about the care.

What nobody can tell me is why. I asked directly. She said it could be the medicine, it could be my thyroid doing what thyroids do over time, it could be absorption changing because everything moves through me differently now, and that there was no way to separate those three with the information available. She said it in a way that was honest rather than evasive and I believed her, and I still came out unsatisfied.

So: has anybody had numbers move like this, what happened next, and has anybody been given a better explanation than the three-shrug answer? I am not frightened. I would just like to know which of my last ten months belonged to which condition.

117

MiraFacilitatorRotterdam, Netherlands

Minnie, I am going to give you the unsatisfying answer as well, and then the useful part.

Your GP’s three possibilities are, as far as I know, genuinely the three, and no test separates them. What is worth knowing is that thyroid replacement absorption is sensitive to a fair number of things, including timing relative to food and other medicines, so a change in how quickly your stomach empties is a plausible route by which the same tablet does a slightly different job. That is a mechanism, not a diagnosis of you.

The useful part: whatever the cause, the management is the same — test, adjust, retest, which is what is already happening. And there is one question worth asking in eight weeks that people rarely do: is there anything about when I take it that you would want me to change. That is about timing rather than dose, and it is squarely her territory.

On which month belonged to which condition — you will probably never know, and I have watched people spend a great deal of energy there. Bring the tiredness and the shedding as symptoms to be managed, not as evidence to be allocated.

51me too 9

AikoOsaka, JP

Osaka. Japanese clinic, careful monitoring, good care. My clinic tested my thyroid before I started and then at three, six and twelve months as a matter of routine, which I gather is not standard everywhere.

Mine has not moved. But because they had a proper baseline and a series, when something else drifted this spring we could see immediately that it was new. A baseline is worth asking for even if nothing is wrong.

43me too 7

OrsolyaBudapest, HU

Budapest, Hungarian pharmacies, patient persistence. Mine went the other way — my replacement dose was reduced twice in the first year and my endocrinologist was entirely unbothered and said bodies change and she adjusts.

I mention it only because the direction is not the point. The monitoring is the point.

37me too 5

FitzLimerick, IE

Limerick. Everyone calls me Fitz, even my mother. Underactive since 2011 and I had exactly your spring: tired, cold, hair on the pillow, and I spent three months blaming the injection.

It was the thyroid. Adjusted in April, felt properly different by June. What I would say from that is not that yours is the same — it is that having a treatable thing sitting underneath an untreatable question is quite lucky, and the adjustment is worth waiting the eight weeks for.

46me too 8

NúriaBarcelona, ES

Barcelona. Catalan, careful, kind. On the timing thing Mira mentions — my endocrinologist asked me to move my tablet to a different part of the morning and to leave a longer gap before eating, and my next test was better. One variable, one change, one improvement, which is as close to an answer as I have ever got out of this.

Worth raising as a question rather than doing on your own.

42me too 6

GildaTrieste, IT

Trieste. Border town, three languages of advice, which means three sets of reference ranges and a great deal of confusion.

Minnie, one small practical: get the actual numbers and the units and the range each time, not just slightly up. I did not for two years and I now cannot reconstruct my own history.

39me too 7

IvorLlanelli, UK

Retired steelworker, Llanelli, new knees, new pace. Nothing technical from me. But the sentence about wanting to know which month belonged to which condition — I have spent two years doing that with my knees and my chest and my blood pressure and I have never once got an answer.

Not knowing is the normal condition of having two things at once. It took me a long while to stop treating that as an unsolved problem.

48me too 11

MinnieDoncaster, UK

Right. Numbers with units and ranges from now on, and the timing question is written down for the eight-week appointment.

Ivor, that last line is the one I needed. I have been treating which condition caused what as a puzzle with a solution I had not found yet, and it may just be the shape of having two of these.

45me too 5

Resources mentioned