Is there anyone here who has good knowledge of thyroid conditions and fertility? (well infertility!).
I’m sorry for the long post! I read posts on here all the time so wondered if someone in the know would try and help me.
I’m 34 and been underactive for 12 years ish, at the point of being diagnosed my TSH was 36. Have been on 175 levo for the last 6 years or so with some experimental adjustments during that time. I have not felt great for years (always exhausted is my main thing) but no GP or endo has helped me with that.
I was never diagnosed as hashis but private medichecks tests a couple of years ago identified raised TPO antibodies of 90 (range 0-30) and whilst this isn’t massively raised, I think it’s raised enough? I went gluten free and retesting this it went down to 60, 45 and now 22, so I assume that’s helping.
I’ve got really low ovarian reserve and I understand that this (sometimes) goes hand in hand with underactive thyroid. Ive been trying for a baby for 3 years. I’ve got pregnant 3 times in the last year, twice naturally and once from IVF (I’ve now done 5 rounds) but all three have ended about 2 weeks after finding out I was pregnant. Obviously this is a big worry and upset, and I can’t help wonder if my thyroid is playing a part.
My ivf doctor believes my thyroid condition is not well managed, and I would certainly agree. He won’t let me transfer any more embryos until he sees it looking better and wants my TSH around 1 (it’s currently 0.1) My GP is not wanting to refer me to an endocrinologist, which is what my IVF doctor has asked for. I want to push for a referral, but need to understand what I need to get out of a referral first. I haven’t got results to hand but even when my T4 is around 25 and TSH around 1 I feel exhausted. But most recently in June my TSH was 0.1 and T4 19 which is why he refuses to let me transfer my last embryo. On my steady dose of 175 my TSH swings between 1 and 0.1 and I still feel really groggy and terrible. I take it the same time every day when I wake up and don’t eat for another hour. Not sure what to do to get my result right to be allowed to transfer.
I haven’t had any thorough results recently so haven’t got a recent T3 and my GP refuses to test anything other than TSH and T4.
Wondering if anyone can suggest what I’m best doing? Was considering getting another medichecks result. The last ones I did were 2 years ago and TSH was 0.245 (0.27-4.2), T4 30.55 (12-22) and T3 was 4.48 (3.1-6.8). I know that was an age ago, but wondering if my T3 is too low and that’s why I feel so rubbish? I’m not doing anything differently since then and on same dose of levo. My B12 and folate were over range as I supplement with b-right vitamin B complex, and my vitamin D was 91 (50-200).
The last time my doc dropped me from 175 to 150 and retested, it must have gone too far the other way and he panicked and put me up to 200, at which point I was feeling awful and heart racing, so i dropped down to 175 again, felt still a bit heart racy so spent time doing 175/150 on alternate days.
Just don’t know what to do for the best! And worried that there is something underlying making me lose repeated pregnancies. I have such low egg reserve that I can’t afford to waste any time. I’ve had all the miscarriage tests except for the immune testings and all was normal.
Thanks to anyone who has read so far!
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Orla9298
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You need to retest full Thyroid and vitamin levels after minimum of 6-8 weeks on constant dose Levothyroxine. How long have you been on 150/175mcg alternate days?
Essential to test FT3. Many of us with Hashimoto's struggle to convert FT4 to FT3 well enough
Many people find Levothyroxine brands are not interchangeable.
Do you always make sure to get same brand at every prescription? Which brand do you prefer?
Many take early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.
Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine
All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
You make no mention of ferritin test results. Good level of ferritin is necessary too
It's a long time since you had vitamins tested, you probably would be recommended to retest
I have been back on 175 daily for about 6 months straight with my most recent results. Feel heart racy but still absolutely exhausted. Think im a bit overmedicated but “not right”. I’ve felt wiped out and what I call “stupidly tired” for years, whatever dose. I’m pretty typical for hypothyroid - intolerant of cold, pins and needles in hands, constipation, cough, but it’s the tiredness that I hate. But my biggest worry is if it’s stopping my pregnancies from developing.
I take 200mcg selenium daily, and 1000iu daily vitamin d spray, plus fish oils. Plus zinc, vitamin c and e, and I take magnesium only as and when I remember. Also a few other ivf related - dhea which I’ve been on a year, inositol and l-arginine.
Will the above supplements skew results if I do a full thyroid and vitamin check?
My pharmacy did suddenly change brands of 2 of my tablet doses, so I’ve been on a new brand for 4 weeks. Prior to that it’s always been consistent brands. I can’t say I feel different this 4 weeks than before. Maybe I’ve been more heart racing, but not sure if it’s related. Resting heart rate is normally 50 ish and at the moment it’s about 70 and I can really feel it.
Suggest you get retested after 6-8 weeks on new brand
Important to test vitamin levels
Are you taking any B complex vitamins at all?
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results
Otherwise just don't take vitamin supplements on the morning of your test
All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
If you decide the Teva is upsetting you take it back to pharmacy and request Mercury Pharma. Or get new prescription from GP, explain that Teva brand is a problem. Don't stay on them if they are causing problems
It significantly affects many. It's the only lactose free one. Presumably the different fillers affect absorption
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Jarrow B-right, like most B complex contains biotin. So stop taking 3-5 days before any blood tests. Biotin doesn't affect all blood tests, it depends on which method the lab uses, but as we don't know, we have to assume it might and stop a few days before
Me and 3other members of my family reacted badly to Teva. Fatigue,wired, jittery,increasing levels of hypo despite tests results. My heart was all over the place which was worst thing. Was shaking but on the inside. I didnt know what was wrong with myself. I just felt i was dyin a very slow death. Iv queried again and again infertility over yrs but have got nowhere. Dnt let it go on. Iv lost out cos of negligence. I wish you best of luck.
I went to Harley street and was put on progesterone pessaries(though not advisable if you’re prone to depression). Nhs won’t prescribe- worked for my little one. I also read medical journals that showed acupuncture to be effective for fertility treatments so worth looking into. I ate lots of avocados and salmon and cut out gluten entirely so worth carrying on with the gf diet. Can you freeze your remaining eggs to give you more time? Have you had your prolactin levels checked? If you get stressed these will go up and affect fertility- only costs a pound for nhs to check so worth looking at.Keep faith xx
Why did they give you progesterone, was it just for after ovulation? I get given that during ivf too and have some for natural cycles from 5dpo.
I’ve never heard of paying a pound to have nhs bloods done, how do you arrange that? My prolactin has been raised in the past but the next test was just at the top of normal.
We will be doing more ivf cycles to bank embryos but I’m worried something is stopping them implanting, ivf consultant seems more concerned about my thyroid that anything else as TSH wavers but I’m not sure what to do about it.
To clarify, the nurse doing other bloods added it on, and said it only cost the surgery a pound. Sometimes they’re reluctant to do tests as it costs. My point being they shouldn’t decline you on grounds of cost. I was on progesterone to reduce risk of miscarrying in first trimester.
I'm really sorry for your early losses. Have your read "Your Healthy Pregnancy with Thyroid Disease" by Trentini and Shomon? I found it really helpful - sadly have lent my copy so I can't refer to it to help you. I am in the same boat with Hashimotos and IVF. Does your GP test your blood regularly through your IVF cycle (egg collection and BFP being the key times)? Do you have steroids in your protocol, as they are often advised for people with thyroid antibodies? I am aiming for a TSH of 1 before I cycle, and will be monitored throughout, then with low dose steroids from just before embryo transfer through to 12 weeks if I get a BFP. L-arginine was not recommended for me (my memory is foggy but something to do with Epstein Barr Virus reactivation which is a recurring problem for me) - I take l-lysine. When I was pursuing own egg IVF I took ubiquinol for egg quality, but not DHEA or inositol, so I'm not sure about any side effects or interactions between them and levothyroxine. I am deliberating whether to have the uterine NK biopsy as all my reading points to a much greater incidence of this being an issue in Hashimoto patients. Reproductive immunology is such minefield though, with all the different schools of thought, and it's such an expensive minefield too. I'm also on TEVA and will be asking for a brand change - feeling very wired and sore about 2 hours after dosing.
I haven’t read it, no, and my GP hasn’t tested my thyroid any more than the normal every 6 months. I’ll try and order a copy! I have had steroids in my protocol, and clexane for some reason.
I’m on 600mg ubiquinol for egg quality too and PQQ which is meant to boost the effect of ubiquinol.
I was considering the nk test, but my consultant said don’t bother as the resulting treatment is steroids which we are using. Plus you have to time the visit pretty well with your cycle and have to have it done twice, so quite an ordeal if you have to travel far! It is a minefield isn’t it!
I’m looking at a clinic in Greece that tests the nk cells, cytokines and other bits and bobs like hidden infections or bacteria from menstrual blood, it’s cheaper and more convenient than the nk biopsy if you want me to message you the website?
I've had the hidden infection testing - well worth the money even if just to rule It out. I'm actually getting treatment in Greece and any immune tests would be through that clinic. So much more reasonable price wise than the UK/USA. Small world in infertility! Clexane is in my protocol too - forgot about it.
Agreed that the uNK test is a whole bundle of logistical planning, especially now it's got to be done twice. It's also several hundred miles from where I live.
My GP didn't test me at all during my first cycle. My endo has written a protocol for testing and I feel more reassured this time. I noticed that my tsh went up from 1.1 to 3.1 just in the pre-stim bcp weeks, never mind the effects of the actual stimming meds.
Won't hassle you - there's lots of excellent advice on here. Just to add that pregnancy requires an increase by around 50% of thyroxine. So you'd need to up your dose. But you don't sound optimally managed in the first place. So perhaps, alongside all the things recommended, stabilise your dosage, look at Natural Dessicated Thyroxine; (I take a mixture of Levo and NDT after years of experimenting, under the intermittent auspices of endos of various abilities, with Levo, T3 (Liothyronine) and NDT). You could really do with finding a semi-sane endocrinologist (sane and competent ones are as rare as hen's teeth). You'll get advice as to who and where on here. Good luck.
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