ERA/EMMA/ALICE Testing Thread 3

[Janefx40]

Hello all,

This is a continuation of the ERA/EMMA/ALICE Testing thread.

New posters are welcome. On here you will find a group of women who are either doing these tests or have done them already and are further on the journey

This is the friendliest and most supportive group so feel free to join and post

Xxx

@Gardenlady543 I'm sorry you feel crap! Really hope there's a simple explanation and not hypothyroidism!

It was the blood results from Friday I was hoping for rather than future ones. That would have given me a sense of what level the pregnancy was before I lost it.

Here's a strange picture. The flowers on the right are the ones I was given for my chemical in January - not even thrown them out yet and the next lot have arrived from a friend I told about this recent early loss!!! Let's hope I get no more flowers for a bit

@Janefx40 do you feel guilty when friends send you flowers etc? I do, as I feel that they then can't stop and feel obliged to send one after every failure! It is very nice of them obviously.

@Gardenlady543 I hope you get your results back quickly and that it isn't hypothyroidism.
Thanks for that info about my blood test. I'm not going to worry about it for now.

@seven201 I don't feel guilty when they send flowers but I don't really like it. I totally appreciate how kind it is but for some reason it just depresses me!

Hope everyone is doing ok this evening x

@Janefx40 only congratulatory flowers from now on hopefully! I think flowers is an interesting one, my mum died when I was a teenager and I didn't really know how to process all the flowers arriving at the time but now when I think back to the house full of huge bouquets of flowers it's quite a nice feeling, at that awful time of my life with so much sadness, when I think back I remember the sight and smell of beautiful flowers.

@seven201 definitely don't feel guilty they are just showing you they care. Nobody gets me anything, I only speak to a few friends about what's happening, they've spent a lot of time listening to me which I really need!

@Gardenlady543 I'm so sorry you lost your Mum. I know you said it was a long time ago but I'm sorry you had to go through that ❤️

My mum died when I was early 30s and she was a very keen gardener. Flowers, especially Irises, make me think of my mum. I am useless at gardening - struggle to tell what is a weed or flower! It seems flowers have a powerful meaning to many of us.

I'm sorry to hear you lost your mum as a teen @Gardenlady543. That must have been horrendous.

@seven201 I'm sorry for your loss too 💐💐.

Such strong women on this thread. I feel lucky to know you all xxx

Thanks @seven201 and @Janefx40 it really is the ultimate kick in the teeth, losing a mother and then not being able to become one.

I am so bloody exhausted today I am desperate to find out the repeat thyroid results to determine if I am tired because I am stressed or if I have to contend with a rapid onset of clinical hypothyroidism that will take months to resolve :( already called the gp once, results are not back yet, will call at the end of the day and if still nothing I will try and get a phone appointment for tomorrow afternoon. If they aren't back by the weekend then I'll have a very stressful weekend ahead of me. I'm so hoping the medichecks test was wrong but they seem adamant that it's correct. Interestingly my hormones that they tested aren't normal for me either, I always run a low LH:FSH ratio:

June 2020 LH 6.9 FSH 8.4 prolactin 118
December 2021 LH 4.59 FSH 11.8
January 2022 LH 4.62 FSH 8.1 prolactin 191

New test LH 8.8 FSH 8.5 prolactin 359

It just seems a bit odd that my LH:FSH is pretty much 1:1 suddenly.

Unfortunately the repeat TSH came back as 10. I've never seen a TSH for from 1 to 10-12 in the space of just over a month. Got a prescription for levothyroxine will take months to get under control :(

@Gardenlady543 oh no!! What a massive, massive pain this is. Can you see an edocrinologist (I may have made up this title) as it does seem odd for it to be so suddenly high. You poor thing. This is not what you need!

@Gardenlady543 oh no!!! It's slightly lower than 12 but still high. When do you re-test. Hopefully you will stop feeling so tired on the meds tho. Ugh I'm sorry :(

So it was 12 and now 10 in about a week? That's also very odd to go down that much so quickly! If I were you I'd do another medichecks early next week to see if it's still going down anyway.

What dose are you going to try/start with?

@seven201 You didn't make up endoocrinologist I'll see what my private health insurance think because I think what's happened is very unusual, hypothyroidism develops over months to years. My thyroid gland gave up sometime between January and now.

So TSH will vary throughout the day, my first test was done fasting first thing in the morning, my next was 11:30am and non-fasting, so this is pretty consistent.

Anything over 10 is worrying (although for pregnancy it needs to be under 2.5) and as my T4 is low that is bad as well. So it's full blown clinical hypothyroidism.

The next blood test will be in 4 weeks, it could take months to come down and once normalised symptoms can take months to resolve.

In the grand scheme of things hypothyroidism isn't that bad, even though it will be lifelong blood tests and medication, but it is the last thing I need right now.

@Gardenlady543 that makes sense (about the 12 to 10). I think it's a good idea to see a specialist if you can. Are you going to raise it with your infertility doctors too (if not done so already) in case they have any ideas as to why it's suddenly happened. What a blow. Sorry you have this on top of the rest.

@seven201 I need to send an email to let my specialist know, as this will put me out of the game for months. She won't know anything about it I'm sure, she will just tell me to come back when it's normal I'd imagine.

Oh, that is so upsetting. Sorry

@Gardenlady543 I'm so sorry. This is utterly rubbish and the last thing you want. Definitely see a specialist as as you say it's quite odd to see such a quick increase. Xxx

I'm really sorry to hear this @Gardenlady543 did the doctor explain why such the big and quick rise? No wonder you've been feeling like you have. I hope the levothyroxine helps. What dose are you on? If you haven't already, ask your GP for the medical exemption form. I was pay for my prescriptions for over a year when I was first on it.
I know it's worrying, but you're on the right meds now. I think they do work quite quickly. So hopefully your next blood test you'll see a difference xx

@VenusStarr no it was a really brief call. I don't think he knows why it's gone from normal to so high. The only thing I can think of is some kind of thyroiditis because my thyroid antibodies are normal.

The GP wanted to start me on 50mcg and titrate up but I told him NICE guidelines say there's no need so he agreed to start me on 100mcg.

This diagnosis would explain why I've said I'm exhausted about 100 times on here in the last few weeks.

I've got the medical exemption form and the pharmacy didn't charge me. Have you got hypothyroidism? I'm worried about how this is now going to add an extra complication to my already complicated case :(

@Gardenlady543 no, I don't have a clinical diagnosis. My levels have never tested above 4, but used to fluctuate to over 3. During my recurrent miscarriage investigations, Tommy's put me on a low dose. To be taken throughout pregnancy and then I can come off it. I've been pregnant 4 times since then. I had hoped at the time it might have been the missing link 🙄
In my 4th pregnancy, my thyroid did go up to 2.5 on that dose but they didn't increase my dose, but in my recent one, it was only 0.7.

I hope you're OK. It's very hard to keep getting knock backs and new diagnoses. Have you had any of your immune blood results yet? X

@Gardenlady543 I think starting on 100 is a good idea. I'm on 50 and 25 alternating through the week. I hope it solves your exhaustion - that must be really hard.

@VenusStarr I haven't had them back yet but have seen there is a bit in the is your body baby friendly book that has linked the immune stuff to hypothyroidism. I'm not sure what I'll think of abnormal results now I know my thyroid hormones were so abnormal when they were done. I guess the big I'm most interested in is whether me and my husband have the HLA match.

Thanks @seven201 gosh the amount of times I've said on here I'm exhausted in the last few weeks it all makes sense now.

I have just realised that actually my TSH wasn't tested in January, so all I know is that my thyroid worked fine in June 2020 before I started IVF. I thought about how I had uncontrollable anxiety during a cycle in mid 2021, the one where my estradiol was 8000 and wonder if that was thyroiditis where thyroid hormones are suddenly released so are very high and then since then I've had hypothyroidism. Who knows.

I have ordered another test to look for thyroglobulin antibodies since the peroxidase antibodies were normal, I'm also going to check my b12, vitamin D, iron status and check for Coeliac. I'm going to see if my private medical insurance will refer me to an endocrinologist to make sure I'm not missing anything.

@Gardenlady543 oh wow. So this could be why your later on transfers haven't worked. From an outsiders perspective this is good news then. How are you feeling about it now?

@seven201 I guess it's difficult to know, I never implanted when trying naturally when my thyroid hormones were normal. Now this is kind of an extra thing. My understanding is that it's the antibodies being high that are more of an issue, my peroxidase antibodies are in the normal range. There isn't any research that I can find with my TSH level which makes sense because anyone with this level would be on treatment.

I feel like it might have been caused by the estradiol on the medicated FETs and mock FETS and I'm upset because I said I didn't want to go on medication again after the first FET, but was put on it 4 more times, if it has been causing this then I guess it's avoidable, but who knows.