To ask how doctors can give such conflicting advice on recurrent miscarriage hoping someone can help me

[ivfregret]

I was previously under a fertility doctor whom I paid for surgery and that didn't help still miscarrying. He told me to go straight to IVF

I then spoke to a consultant at Tommy miscarriage clinic who said try IVF in 12 months.

I've spoken to about fertility doctor after my fifth miscarriage who is saying IVF is unlikely to help and I need further testing.

I am really unhappy how can so many doctors be giving such vastly different advice, IVF either can or cannot help recurrent miscarriage?

What should I do?

Do you have a sympathetic GP, OP?

If so, perhaps see if you can get ALL the blood tests prescribed, even the genetic karyotyping and the ones that have to be done on certain days of your cycle. That way you can make sure you've done all the tests that don't need to be done by a gynaecologist with specific equipment. I can give you a list of everything I was tested for, if that would be helpful.

Getting your thyroid under control should be a priority, because that is a known cause and a relatively easy fix.

@RosaBonheur I refuse to deal with the NHS.

For example last week I called them to explain I am high risk have lost four banquets they said refer to a midwife tell them you're high risk so i did, called the midwife twice the past week to say why hasn't anyone been in touch and they said because you just have to wait for the call?

Went to see a private doctor instead and the next day I am in for a scan talking medication. It's painful to admin but I have to abandons my regular nhs doctor now it's completely useless.

My thyroid I keep being told is under control. Or slight high etc,again nhs go even if slightly high will not give medication so maybe I should find a fertility doctor AND a thyroid private doctor?

@RosaBonheur I have already had Karyotyping.

My husband hasn't because he's an asshole about it and keeps thinking the issue is with me. And it probably is but for the sake of going for a blood test you'd think he's just so it to rule out wouldn't you.

Anyway let's not make the thread about him, just very frustrating this whole damn thing

@RosaBonheur can you tell me what you were tested for please

If you are going private then I would have thought a fertility doctor could prescribe thyroid medication.

@RosaBonheur they can but I only realised the tsh was slightly over last week it's too late now

I am out at the moment but I'll look through my medical notes later and let you know.

It's so frustrating op I remember those days . I had 4 miscarriages in a year so no problem getting pregnant just couldn't get past 7 weeks . I had so many tests all came back fine and DH had top class sperm. I started doing my own research and decided I wanted to try progesterone suppositories , the Dr wouldn't prescribe them as he didn't know enough about them . I had an appointment at the fertility clinic and asked for them , he was dismissive about it but said it wouldn't do me any harm . That was years ago my little progesterone baby is now 10. It might be worth looking into that and asking on your next appointment. Good luck x

@RosaBonheur thank you x

@mycatsanutter I tried progestrogrone pessaries for the first time in this pregnancy from the moment I knew I was pregnant but it hasn't worked.
M took twice daily

Ah sorry to hear that , I used them anally as I was told they are more likely to stay in your system better that way . Hope you get some answers and help soon .

I think the further testing is a good idea, especially if you have chronic health conditions. A friend had 6 miscarriages and her NHS fertility doctor found she had a clotting disorder and a bicornate uterus that her private doctor missed. Some clotting agents, aspirin, and a minor op to fix her womb and now she has a lovely daughter.

Have you had cytogenetic testing on any of your miscarriages to find out why they happened? We had this via the NHS/Tommys and found that 2 miscarriages were caused by random genetic faults that were incompatible with life. Others under the same clinic found that they had hereditary genetic conditions that required embryo screening/IVF

Thanks for your help, sorry to post this but again I need help the bleeding now started and people talk about collecting a sample - how do I do this? Keep a pad and take it for testing? Sorry just confused as I've not had one single doctor tell me to keep a sample

I've been through multiple ectopic pregnancies, but conceived DS naturally (and had a textbook pregnancy) in between. Then ttc #2 and the ectopic pregnancies continued. Tube got removed, referred for IVF. We did three unsuccessful rounds. My eggs are apparently of poor quality. So, moved on to donor eggs with DH's sperm (abroad, paid for privately). Also had two transfers of good quality embryos (3 in total). They implanted for a short while and then I lost them. My clinic abroad has now requested a biopsy and a hysteroscopy before we proceed with anything else.
I think further testing would be the way to go.
Good luck.

If you mean getting a tissue analysis done, it's not blood they would need, but the actual embryo. At some point, probably whilst on the toilet, you will most likely pass the amniotic sac with the embryo inside it. If you were able to catch this in some kind of container (ideally a sterile pot such as the kind you collect a urine sample in, or a sterilised jam jar with a lid) and get it to the hospital quickly, they might be able to analyse it for you. However, you will be at the mercy of whoever is there when you show up, and they'd need to understand exactly what it is you want and be able to do it for you. When I was pregnant for the 6th time my doctor gave me a pot for this purpose and told me to carry it around with me, and told me which hospital to go to if I did miscarry and manage to collect the pregnancy tissue.

To be honest, I found it quite traumatic carrying that pot around in my handbag, and I'm not sure that I would have been able to catch anything even if I had miscarried. As luck would have it, that pregnancy went to term, so I never used the pot.

There's a reason why most tissue analysis is done when the woman has a missed miscarriage and opts for surgical management.

@RosaBonheur I had surgical management for one of my miscarriages and noone gave me any options to analyse the sample. They really are useless

I haven't ready everything but you'll want to know your thyroid numbers. Fertility drs say your tag needs to be between 1-2 which is lower than 'normal' so don't just take their word that your levels are 'normal'. If you have symptoms of an under active/overactive thyroid please take that into consideration if your numbers are 'normal' but borderline.

@DillyDallyingAllDay yes but then I don't know how to keep them normal, tje fertility doctors don't say test every x and take this medication forever until you conceive

So my thyroid levels went to normal fertility doctor let me know and now I've fallen pregnant no one is giving me a clear guide on what I should do. No one

I’m so sorry you’re going through this. As you know, you have to become your own advocate and do whatever you must.

For pregnancy, your TSH should be below 2.5 as an absolute maximum and ideally below 1

Read “your healthy pregnancy with thyroid disease”.

@LividHouse I know but I didn't expect this pregnancy and even after call in by my doctor and telling them tsh was high they didn't give a shit and just said wait for midwife to call hence I booked emergency private appt and it was too late,

So how do I have my thyroid monitored forever or until Conceieved is what I'm saying do I just need to get a private doctor and pay monthly to see them? A thyroid doctor?

My tsh was 2.62 I took a private test because even when taking private tests where do I get the meds from fertility doctor or private one?

Another vote for Dr Shehata. He doesn't always have the best bed side manner. But he is bloody brilliant at what he does. I know a number of women who have had healthy babies following years of recurrent miscarriages thanks to him.

CRP/Dr Shehata's clinic can monitor thyroid levels and prescribe levothyroxine. My GP prescribes mine, but they won't always do it. In terms of collecting a sample, I ordered some mini seives off Amazon and had the very grim job of collecting the embryo. Then I had to take it to my EPU. My sample came back as inconclusive/couldn't get a result who then send it off to I think Tommys, from where I live.

If you have a thyroid issue then yes, you need to be monitored 'forever' and you take medication to keep it controlled.
However, if it's purely pregnancy related; then it will only be for the duration of your pregnancy. The fertility dr should be asking you to start on a low dose of levothyroxine if your tsh is 2+.
Your GP will be able to prescribe it for you if there's a letter from a consultant; you'd need a blood test every 6 weeks till you find the amount of medicine that works for you.

OK I had the following tests:

Fertility hormone panel

Day 3:

FSH
LH
E2 - estradiol
AMH
Prolactin
Androstenedione
Testosterone

7 days after ovulation:

Progesterone

Thyroid hormone panel

TSH
Free T3
Free T4

Genetic mutations

Genetic karyotype
Factor II 20210A prothrombin mutation
Factor V Leiden mutation
Factor XI Rosenthal mutation
Factor XII Hageman mutation
MTHFR mutation - both types

Blood

Complete blood count
Hemostasis
C protein activity
S protein activity
Lupus anticoagulant

Other

Pre and post prandial blood glucose
Calcium
Phosphorus
Vitamin D2 and D3
Selenium
Various antibody tests

Not all of these tests are equally important, but here are the main ones:

FSH, LH, E2 and AMH taken between days 2-5 of your cycle give an idea of your ovarian reserve. If your FSH is high and your AMH is low it indicates diminished ovarian reserve, but it's best to do these tests in conjunction with an ultrasound around day 10 of your cycle to see your antral follicle count, i.e. how many follicles you have developing in a typical cycle. A very low number of follicles indicates diminished ovarian reserve, a very high number indicates polycystic ovaries. Most people are somewhere in the middle and it is age dependent, so for example, an AFC of 10 would be considered low for a woman in her 20s but high for a woman in her 40s.

These tests are typically done at the beginning of your cycle, but your AMH can be done at any time because it remains stable. Your FSH, LH and E2 levels fluctuate a lot, especially in the first half of your cycle, so the test should be done before these hormones start to surge in preparation for ovulation.

The progesterone test is sometimes referred to as the Day 21 test. However, this is based on you having a perfect 28 day cycle with ovulation on day 14. It should actually be taken 7 days after ovulation. Ideally you are tracking your basal body temperature and can pinpoint your ovulation day exactly. Otherwise, if you are doing ovulation tests you should do this test 8 or 9 days after you get a positive test. The purpose of this test is to see whether your body is producing enough progesterone after ovulation. If low progesterone is an issue, supplementing with progesterone may help. Most women treated for recurrent miscarriage are prescribed progesterone even if their test results don't indicate that their progesterone levels are the cause.

The tests for the various genetic mutations are to see whether there may be a known genetic factor causing your miscarriages.

The genetic karyotype test and the MTHFR tests - both mutations - should be taken by both you and your partner.

When I had my first round of testing my husband and I both had our genetic karyotype tested but I was only tested for one of the two MTHFR mutations and he wasn't tested for either. When I switched to the new doctor he prescribed the full MTHFR tests for us both.

The genetic karyotype test will reveal whether either of you have any disorders of sexual development and whether either of you are a carrier of a translocation. If either of you has a translocation then you have a high probability of miscarrying, and this is one situation where IVF is an expensive but known fix. The IVF would involve preimplantation genetic screening and any embryos carrying the translocation would be discarded.

The MTHFR mutations affect the body's ability to metabolise folic acid, meaning that you need to take folate or methylfolate instead. Personally I would advise that you and your partner just both assume you have at least one of the two mutations - they are pretty common - and take 1000mg/day methylfolate.

I don't know much about the other mutations but they are linked to recurrent miscarriage - possibly clotting disorders? Depending on what is found you may be put on an over the counter treatment such as baby aspirin, or something stronger such as clexane/lovenox injections. Baby aspirin is something you can do yourself and many women self medicate in this way. A lot of women are advised to take it during pregnancy for all kinds of reasons such as age or having previously had a low birth weight baby. My doctor told me to stop taking it at 35 weeks, I assume because it increases the risk of postpartum haemorrhage.

The blood panel, again, is mainly to try and diagnose clotting disorders, and the miscellaneous tests are to see whether you have any relevant nutrient deficiencies.

And the thyroid panel you already know about.

I think I already mentioned that in addition to these tests I had an ultrasound to check my antral follicle count and endometrial thickness, a hysteroscopy to check for any scarring or structural issues in my uterus, and an endometrial biopsy to check for abnormal natural killer cells. As far as I am aware the only doctor who does the latter in the UK is Mr Shehata, however, there is a long running thread on here about it, if you search on Google for "Mumsnet Shehata natural killer cells" or similar you should find it. The most common treatment for that is prednisone, which reduces your body's autoimmune response to pregnancy.