Hello, I am wondering you could share your knowledge with me please. I have a healthy, living child who is 2y/o, but I have recently had 3 miscarriages (Oct 2022 6+4, Jan 2023 8+6, and last weekend at 7w). I have MTHFR compound heterozygous, but I was on baby aspirin and a bioavailable prenatal with folate.
I have done 3 private thyroid tests, results copied here (but I can't seem to move them to a good place!). These results are in normal ranges but I know that for trying to conceive and pregnancy, the TSH should be below 2.5 - this is about all I know. I keep reading things about hypo and hashimotos - I don't think I am there yet, or am I? I was about to order a TPO test - do you recommend? I figured that was the best/only way to determine if it was autoimmune drive? I don't just want to take medication if I don't have to - if I can do something to change it.
Can I manage this naturally? Should I be taking thyroid support supplements? I have been reading this forum and I am considering working on my adrenals then thyroid? The midwives supporting me didn't realise the importance of the thyroid, but the consultant said they will rerun TSH and if it is higher they would start me on low dose thyroxine (I've also read a lot about how this will need checking regularly if I get pregnant again).
This is a bit of a jumble, I'm sorry. Please help if you can!
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Firsty I'm very sorry for your losses.
Do you have the reference ranges for your tests? We need to see them as they vary from lab to lab.
Did you do the test as per the protocol recommended here? Test at 9am, fasting, last levo dose 24hrs before the blood draw & no biotin containing supplements for 3-7 days?
Which prenatal supplement are you taking? How much folate does it contain? If you have MTHFR genes then there may not be enough folate in that for you. Also not recommended to take iodine which is in some multivitamins.
I would definitely recommend testing with one of the package bundles private labs do to include antibodies and vitamins - ferritin, folate, B12 & D3. Work on vitamin levels before adrenals. See link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...
Thank you so much for responding, I've attached the results with ranges. I used monitor my health, the full screen. I am awaiting results for the others (vit D, haemoglobin, ferritin, transferrin saturation, active B12, folate) unfortunately as there was an issue with the second tube so I only got half the results. I will order the TPO now though. When you say work on vitamins, do you mean ensure the levels for the vitamins tested (in the brackets above) are in the right ranges? Then work on adrenals?
I did follow the protocol as described yes. Actually no I've just checked, the prenatal has biotin and I was still pregnant at the time so that would have been in my system. What affect would that have on the results?
I am taking naturelo - recommended by the mthfr group I'm in. I'm also taking a methyl b hero from in health recommended by my chiropractor. So folate is all covered. There is iodine in there though, from wild kelp.
Monitor my Health only test TPO antibodies as it is an NHS lab. There is a different type of antibody called Thyroglobulin antibodies which the NHS (and MMH) dont test for but can be positive in some who have negative TPO antibodies.
The thing with taking a multivitamin is it is unlikelly to raise the levels you need to an OPTIMAL level. They contain things like iodine which isn't recommended in hypo people, also iron which should be taken 4 hours apart from other vitamins as it can prevent absorption of them. Better to test your key vitamins and supplement them individually.
Biotin is used in the lab testing process for thyroid bloods and can alter your results, hence the need to stop taking it before tests for a few days.
Before taking anything with iodine you should check to see if you really need it. This is unlikely in the UK. It is used as an anti thyroid medication.
I've just got the TPO and TG through Randox Health, so will anxiously wait arrival!
The 3.94 result was after my first miscarriage, which has made me wonder if my thyroid struggles during pregnancy. I was in a metabolically supportive way of eating and regularly working out before my daughter, but this has fallen since having her. I am not overweight and I still eat well, I can easily get back to it so I am hoping that will make a difference. That first miscarriage I was 9w but it was a missed miscarriage - my body didn't realise for a while. I wish I knew to test again after the second, I've always wondered how that lasted longer.
I have been referred to the clinic, but they are only offering limited testing - just lupus and anticardiolipin. They say I can access more if I have another miscarriage, which feels incredibly unfair considering I've physically and mentally endured 3 already, and the policy states three. I've done a lot myself - thyroid, mthfr, homocysteine, hba1c, microbiome etc. but I was definitely hoping for more of a thrombophilia profile. They aren't really interested in my thyroid results - only from me pushing it have they considered it and suggested they will test again. I don't think I will get to see an endocrinologist. They have just talked about asking the GP for thyroxine.
The stats you've posted - 43% and 51.4% - what do these tell me? What do I do with those?
The stats I posted are just a way of analysing where your numbers fall within the reference range. Ideally they would be a little higher perhaps but of course we don't know where exactly the percentage should be for each of us individually. It's useful to be able to measure them from test to test.
Do you have symptoms of hypothyroidism?
During pregnancy the body requires more thyroid hormone so when you're ready, next time around I would recommend testing your thyroid almost as soon as you know you are pregnant. Test as per the protocol here. Test at 9am, fasting, no biotin containing supplements for 3-7 days.
I don't think they understand the reasons always for pregnancy loss and the recurrent miscarriage clinics mainly offer reassurance and a bit more testing, scans etc
If you do have positive antibodies it will be a good pointer, and further evidence for you to give to the clinic that you might need thyroid support.
I'm often cold (but inside the house, not usually outside). I'm quite tired, but I have a toddler who wakes at least once, a dog that needs lots of walks and a job and... life. I've never known the reason - if it's my life or my thyroid!
My hair, skin and nails are good and strong. Bowels and weight fine. No muscle cramps. Some brain fog Ive been passing off as baby brain. No pain in my fingers or hands. No issues with periods or ovulating. I have felt low, not depressed, but again I've considered that re my losses and frustration of my situation.
Thank you, that's reassuring. Just waiting for the kit and I'll post as soon as I get results. Should I do it on this thread still, I assume so. Thank you for all your help
Great advice from above but to recap you need adequate thyroid hormone levels to conceive and retain the pregnancy.
You also need a low TSH which in a normalised thyroid physiology would collaborate with adequate thyroid hormone levels (inverse correlation) but which also stops elevated prolactin that negatively influences conception.
Also lots of anti-natal sups contain iodine now a days and should you have thyroid issues being driven by Hashi these are likely to excerabate the problem. Therefore, you need, TSH, FT4, FT3 and thyroid antibodies TPOAb and TBAb testing to see exactly where you’re at.
Good thyroid function can be impaired by iron and nutrient deficiencies that can be driven by hypothyroidism. Chicken and egg scenario. hence you need all nutrients testing also.
What is also good to know is very few can top up low thyroid hormones with thyroxine as, as soon as the pituitary recognises levels are raising it risks secreting less TSH and so encouraging less thyroid hormones and instigating a further dose raise, And so the cycle continues.
If we have an unknown Hashi tendency, any change in hormones can induce a flare.
Thank you for your reply. What nutrients should I test please? I've got the radnox health kit arriving as soon as it can, so I'll have all the ones you've mentioned above. I'm also still waiting on vit d, folate, active b12, ferritin, transferrin saturation and haemoglobin. I'm sorry I don't think I follow what you're saying about thyroxine - it's not worth using and can create further issues?
The radnox kit - tsh, FT3, ft4, tpo and tg antibodies - that will give me good insight into whether I'm leaning towards hashimotos won't it?
Pregnancy thyroid issues often gets lumped together with gestational diabetes which commonly reverses after pregnancy but although the books say thyroid issues can reverse, I haven’t heard of anyone being able to stop thyroid hormone replacement after starting.
However, optimal thyroid hormones and low TSH are absolutely vital and many women have a need to start medicating thyroxine before or during pregnancy, or even postpartum, coz if you need it, you need it.
I’ve just read all your replies and you seem already very well researched. Well done because the medical profession aren’t always as helpful as they could be regarding complex thyroid/sex hormone issues.
Thank you, that's clear, I appreciate the insight. Oh yes, I'm not very trusting of medical professionals unfortunately. So glad there are places like this that we can share knowledge together.
Hello, so sorry to hear about your recurring miscarriages.
I believe it is very important that you have a rheumatologist check for antiphospholipid syndrome, ( often abbreviated to APS.) Miscarriages are a hallmark of the antiphospholipid syndrome.
It’s not at all to see autoimmune thyroiditis and APS travel together. ( Sjögren’s Syndrome likes to join in the mix.)
Professor Graham Hughes ( of the London Lupus Centre) gave lectures on this titled “The Big Three”.
Thank you for your knowledge! I have pushed for antiphospholipid, they refuse. The anticardiolipin is the most common of the antiphospholipid - I'm wondering if something comes back from that whether they will test me further. I will look for the lectures, thank you!
I have a severe case of APS, and dealt with a few miscarriages as well. I have a , slightly lazy thyroid”, but no antibodies directed against the thyroid.
Have you had the blood panel run for APS? Usually the three most common antibodies are drawn for and run in one panel. They are:
*aCL ( anti cardiolipin )
*B2GP1 ( beta 2 glycoprotein 1)
*LA ( lupus anticoagulant) ** note! This is a very confusingly named test- it does not test for lupus, has nothing to do with lupus, and in fact has EVERYTHING to do with actual clotting propensity if the blood inside the body itself. ( the test - while in the glass vial - in vitro- has viper venom added to it to prolong the clotting time- ( anticoagulant due to viper venom) just as a testing method.) The antibody - if your body is producing it- within your body- is a prothrombotic and will render the blood a bit clotty.
Have you already tested positive for aCL? ( you will only need to test positive for one of the three , twice 12 weeks apart to rule out a false positive - plus have demos clotting event or miscarriage history to fulfill the criteria for diagnosis of APS.)
That is a bit over simplified- but to get you on your way for help it’s a start.
I can link you to the actual diagnostic criteria if you’d like?
The lectures I told you about were for other physicians or rheumatologists for continuing education units.
If you are getting no where with your physician, you could book privately into the London Lupus Centre with Dr. David D’Cruz.
Thank you, I love the detail. I am getting tested for lupus and anticardiolipin, so I guess that is 2 of the three - they aren't offering the third. I might also clarify if it's the lupus autoimmune or lupus you have mentioned.
Not sure I understand your question. I know these are confusing terms!
Lupus itself is a stand alone autoimmune disease and has 4 subtypes, the most common is SLE.
Antiphospholipid Syndrome it’s own stand alone autoimmune disease, but is often seen running along side Lupus. It was first described by Professor Graham Hughes and his team, as some of his lupus patients had a tendency to clot. One of his researchers ( Nigel Harris) isolated phospholipids and in 1983 they published their findings.
The hallmarks of APS are migraine, recurring miscarriages, and often a family history of autoimmune diseases or early stroke or heart attack ( 1 in 5 under the age of 45-50) with no explanation of why.
Often a lacy purple / red lacy rash on legs/ knees called livedo, tummy pain after meals ( called abdominal angina) … low platelets or autoimmune Thrombocytopenia, seizures of the temporal lobe.
sorry, I just replied above( below?) . I myself share many lupus traits, but do not meet the criteria for a lupus diagnosis. ( no double stranded DNA, no anti smith anti bodies- )
About 1/2 of lupus patients have APS antibodies, and about 1/3 of these patients go on to develop clotting complications. ( this number might be a little highe depending on which APS expert weighs in on the conversation.)
Usually anti platelet is started on the lupus patients that are positive for the antibodies, but have not demonstrated clotting.
There are options for treatment with APS in pregnancy! This is the exciting news- and why it’s very important to be seen be a specialist.
On the NHS, I recommend Addenbrooks , with Prof Natasha Jordan ( Rheum) if you are near. She was my consultant at the London lupus centre , but now is concentrating all of her time to her NHS practice.
If it should be the case you are in need of APS treatment, you would need specialist team working together in hematology, rheumatology, obstetrics in a large NHS hospital.
one more clarification: the three tests I named testing for, in the blood panel: the are all three tests for APS only.
The are likely testing you for lupus at the same time. ( differently named antibodies and markers. Again, oddly enough, “Lupus Anticoagulant” is a clotting time test for APS, not lupus.)
Thank you, I so appreciate your knowledge. I can't seem to find a private test for this, so I will raise it again but I don't think it's likely I will be able to access testing where I am. I've seen treatment is often warfarin or aspirin - for my last loss I was already taking a daily baby aspirin, so I don't know that it has helped. I've also read lots of people are on a combo of aspirin and lovenox/enoxaparin, but I'm not sure I'd get that unless the anticardiolipin came back with concerns I guess
no, no private tests as you need an expert to help interpret the results, then manage care. ( careful patient history, as well as family history.)
The anti cardiolipin alone is not useful. It is not accurate that it is the most common one to come back positive. ( as far as I’m aware.)
This is why you need to be seen by an APS specialist. You could simply be LA positive. I have a dear friend who had many pregnancy complications and was only ever LA positive.
* edit: the anti cardiolipin alone is enough, so it is useful if it comes back positive. It is not useful if it comes back negative, is the others need to be tested also. My apologies .
if you are positive for one of the three ( must be tested for all three) then aspirin alone will not be enough. Enoxaparin plus aspirin is standard treatment throughout pregnancy- and usually up to 6 weeks post partum.
I've just come to reply to the email they sent me, it says lupus anticoagulant and anticardiolipin antibodies. So it's just the two out of three tests. Then also - will rerun my tsh. Won't consider thrombophilia as I haven't had a late miscarriage.
There is reference to obstetric APS. The blood becomes a bit more pro thrombotic ( “sticky”) when pregnant- in all women. Add APS antibodies on top of that and it’s a recipe for heart break. Many women miscarry around the 12th week. ( this definitely counts as miscarriage.) even 8 weeks for goodness sake.
The culprit is usually UGRA, as the cord / uterus experiences clotting events- even microvascular clotting.
Pre eclampsia, placental abruption, and sadly / tragically still birth can occur later in pregnancy.
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