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What my bloods look like after two steady years

Started 26 October 2025 · 16 replies · 138 hearts · read 1.2k times

OttolineEdinburgh, UK · 26 October 2025
9 months ago

A question rather than an update: What my bloods look like after two steady years

Writing this partly to ask and partly because writing it down usually tells me what I think.

The thing that has surprised me most is how much of this is about other people rather than about me.

I am aware some of this may be nothing. I would still like to know whether other people have had it, because I have spent a fortnight assuming I am the only one.

My prescriber has been fine, genuinely. The problem is that I get nine minutes twice a year and there is no version of nine minutes that covers this.

Not looking for a plan. Just company and whatever anyone has found.

46

DillyNewport, UK
#1

Practical, boring answer: write the three questions down before you go in. I have never once remembered them otherwise.

6

TillyHereford, UK
#2

I did exactly the same and felt terrible about it. You have not done anything wrong.

10

TobiasHamburg, DE
#3

I am the person who had the frightening version of this. I went in, it was investigated, and it was not what anyone feared. Going in is the whole of my advice.

8me too 4

BenediktFacilitatorVienna, Austria
#4

Gently: you have apologised three times in a post where you have done nothing that requires an apology.

20

HarlanDenver, CO
#5

For what it is worth, the trial data on this is thinner than the confidence of the internet would suggest. Worth knowing when you read the posts.

5

RuthieLeicester, UK
#6

Gently disagreeing with the reply above, or rather adding the other half of it.

It got worse before it got better for me, which I wish someone had said. About ten days of worse.

8

SephNorwich, UK
#7

The thing that changed it for me was going slower, agreed with my prescriber. I am not suggesting you do that. I am saying the conversation exists.

7

RomyVienna, AT
#8

the reply above said something I want to sit with for a second.

Have you got anyone who can be with you when you do it? It made an enormous difference to me and I felt silly asking.

7me too 9

BirdieMargate, UK
#9

I have been in this circle a year and this question comes round every few months. It is not a silly question. It is the question.

10me too 1

RufusGuildford, UK
#10

Gently disagreeing with the reply above, or rather adding the other half of it.

Similar here, and mine turned out to be a completely unrelated deficiency picked up on bloods.

6

BlueStroud, UK
#11

I am about four months behind you and I have been dreading exactly this, so thank you for writing it down before I got there.

9

TamsinRedruth, UK
#12

Building on what the reply above wrote rather than answering the original question.

Yes to the burping. It is real, it is unbeautiful, and it does settle.

6

MintaColchester, UK
#13

Gently disagreeing with the reply above, or rather adding the other half of it.

Coming back to this a fortnight later to say it settled. Leaving the update because I hate reading threads that stop.

8

TildaCambridge, UK
#14

My experience was very boring, which I offer as data. Some of us just get a dull time of it.

8me too 1

BenediktFacilitatorVienna, Austria
#15

the reply above said something I want to sit with for a second.

Two things, both boring. First, none of us can tell you what to take. Second, the conversation you want to have is with your prescriber, and we can help you write it down.

13

LenaMunich, DE
#16

I keep a two-line diary and it is the only reason I could answer this question about myself. Worth starting even now.

7