... Trying not to blame myself ...... - Fertility Network UK

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... Trying not to blame myself ......

Rachael_ profile image
42 Replies

Have any of you lovely ladies had to take levothyroxine (thyroid medication) wile undergoing ivf.... Yesterday was one of the most hardest and worst days ever as my BFP with a perfect embryo turned into a chemical pregnancy.... I am looking for answers as to why and how this could of happened im trying my best not to see it as chromosomal issues with our eggs... The clinic told me that everything was perfect my lininc etc..... the only thing i can blame for any of this is my thyroid I currently take levothyroxine 50mg daily and i have been told to carry on taking this never ever stop.... my clinic found the issue with my thyroid and then they passed it over to my gp .... i have been taking this medication now for over 2 years .... What im worried about is as soon as i found out i was pregnant should i have gone straight to either the clinic or the gp and asked them to check my thyroid levels ..... 🙁

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42 Replies

I am def not qualified to comment medically - but I thought you have to have your thyroid working to concieve anyway?

So your meds were definitely necessary I would have thought.....

Someone with experience might have proper insights.

Xxx

Rachael_ profile image
Rachael_

Thanks lovely 😊.... my thyroid levels were a pain and took over 8 months to regulate and get me on the right dosage.... im just thinking as soon as i saw that bfp should i off sorted myself out rang sorted a bloodtest out just incase the pregnancy caused me to need a higer dosage ..... im clutching at anything i can so this dosnt happen again ❤️ xxx

in reply to Rachael_

Yes I understand - try to find out as much as possible. Hope someone can share some personal experience xxx

Rachael_ profile image
Rachael_ in reply to

I hope so 😘 xxx

LouBoo85 profile image
LouBoo85

Hi rachael my mum has thyroid issues and as far as I am aware it can make you very ill and be extremly dangerous if it goes untreated so im guessing you couldnt have stopped your meds for ivf anyway. I would have thought the clinic would have given you the heads up if you needed to go and get your levels checked again once pregnant if they thought it would be an issue so I really really wouldnt blame yourself! I can only imagine how you feel and its human nature to want to blame things on something or someone when stuff goes wrong but it might just be one of those thongs and you will have a better outcome next time im sure! ...has the clinic given you any explanation? Xx

Rachael_ profile image
Rachael_ in reply to LouBoo85

Thanks for your reply..... i just would hate it if i knew i could of stopped this from happening... ive looked at it at every angle and i can only see this as been the problem ... i remember going for my first ever chat with the consultant and he said that my thyroid is very high we need to fix this get you on the right medication and it could just be this as to why we arnt conceiveing ... i felt like a new woman when ide been on the tablets for a wile... it took a wile before they said i was on the correct dosage to carry on and that was that.... its only now looking into it all that i feel maby i should of asked and said what do i do about this if i find out im pregnant i just assumed everything will be ok ... but dr google is just repeating notify your gp as soon as you find out your pregnant.... 😩

DianeArnold profile image
DianeArnoldPartnerNurseFertility Network UK

Hi Rachael. I am so so sorry that this has happened to you. However, your thyroid gland emits a very important hormone, and if it is not quite right, then you may need support for it for life. Once you are stabilised on the correct dose for you, then you only need to have a blood test every year to check whether the dose needs altering or not. A chemical pregnancy is so called because of the failure of hCG maintaining and increasing, so is nothing to do with the thyroxin. Sadly, it's one of the tragedies that can occur. Hope you've got plenty of support around just now. Thinking of you. Diane

Rachael_ profile image
Rachael_ in reply to DianeArnold

Thankyou so much diane for your advice ❤️Xxx

NMP1026 profile image
NMP1026

Hey lovely

I'm so sorry to read this and for your news.

I am not sure this will help but couldn't read and run. I was diagnosed with an underactive thyroid a couple of years ago. I had my meds increased for the IVF. My TSH went to under 2.5. I got my BFP on the 14th April and by pure fluke I decided to get my thyroid re.done and it was at 4.8 significantly high. No one told me to do this neither the clinic or my GP. After an argument with my GP they increased my medication and luckily my levels are now back below 2.5 so within range. I ended up paying nearly £300 to go and see an expert. They said that as soon as you get pregnant your thyroid levels change and your meds should be altered.

There really should be more information on this. I'm really hoping this doesn't upset you. Please please and pretty please don't blame yourself xxx

Rachael_ profile image
Rachael_ in reply to NMP1026

Thankyou for your advice ive read up about it and the affects all kinds ... it has to be important because there isnt many medications you can take wile pregnant but you have to carry on taking that so it must be so important... i know now for next time im not having anything jeopardise my chance ... thankyou for your comment you have given me hope... things happen for a reason and i know now im getting it checked straight away i have a friend who was under a consultant all the way through her pregnancy because of her thyroid she was having bloods all the time thats what made me think ... i take that pill every day like clockwork alarm goes off pint of water and nothing for half an hour ... its only now i thought about it ... and no i wont blame myself for this or anyone it is what it is and nextime i have your advice with me so thankyou so so much ❤️ Xxx

NMP1026 profile image
NMP1026 in reply to Rachael_

Awe bless you hun. Tbh I didn't realise it was so important. I'm like you I take my medication religiously and know I have the condition but just thought oh it's well managed. I am under the care of a consultant and have been told I will need blood tests every 3-4 weeks it also puts me in the high risk category.

Anyway look after yourself and your OH. When the time is right I am wishing you so much luck with your FET xx

Rachael_ profile image
Rachael_ in reply to NMP1026

Thankyou I’ll deffinetly be asking about it when im ready for my fet and requesting more frequent tests xxx

lucylob profile image
lucylob

I take 50 levythyroxine and have taken it for 3 years and all through my current ICSI cycle. The drs and nurses have always said to keep taking it no matter what and have always monitored my level throughout x

Rachael_ profile image
Rachael_ in reply to lucylob

Thankyou lucy im going to bring this up when im ready to go in about my fet i can sort my levels out with my gp for now and get them checked but for the future as soon as i get a bfp ill ask the clinic to monitor my thyroid till they pass me over .... Xx

lucylob profile image
lucylob in reply to Rachael_

That’s the best thing to do!! Fingers crossed all goes well for you ! I’m due my ET tomorrow 🤞 x

Rachael_ profile image
Rachael_ in reply to lucylob

Awww good luck is this your first one its a lovely experience I remember mine well ill never forget the litttle miracle that happened that day 💖 xxx

lucylob profile image
lucylob in reply to Rachael_

It’s my first yes, thank you so much xxx

Rachael_ profile image
Rachael_ in reply to lucylob

Ahwww good luck lovely 💖 xx

lucylob profile image
lucylob in reply to Rachael_

Thank you xxxxx

Rachael_ profile image
Rachael_

❤️xx

Saya85 profile image
Saya85

Hi Rachael

I can empathise- I am hypothroid also and have had to have my dose changed a few times and increased over the years.

Do you have any printouts for your blood test results? As mentioned above TSH has to be below 2.5 for conception.

Yes it’s true that you often need your dose increased by 25-50mcg straight away when pregnant but I doubt it would have made a difference in a couple days especially as you actually had a BFP and implantation (if your thyroid was too high it most likely wouldn’t have been successful to begin with)

You should have it checked every 4-6 weeks once pregnant and adjust doses accordingly.

However I would disagree with Diane in one respect. Most hypothyroidism is autoimmune in the western world which means your immune system is slowly attacking your thyroid gland and weakening it. Further attacks can change your dose need very quickly. Levothroxine (what you take) is not a medication- it’s a hormone replacement and does need to be taken for life as your thyroid is not functioning properly.

Many things can affect your autoimmunity and your levels can fluctuate. You can have a flare up etc so once a year isn’t always right to test. If you are feeling unwell again you will need more reg checks. Often 3-6months.

also vitamin deficiencies are very common with it. You may want to make sure your GP has checked vit D, ferritin, folate , vit b12. Always get a printout of your test results with the ranges. Doctors often say it’s ‘normal’ Even if it’s very low in range.

With thyroid tests: ask Gp to test TSH, free t4, (free t3) if you can and Thyroid antibodies: TPO and TGA

If you can do this ASAP then it willgive you an idea if your thyroid is uncontrolled atm

My thyroid was perfect before ivf treatment but then I tested just before embryo transfer and it had shot up. I believe ivf meds and other hormones can really throw our thyroid out of whack (oestrogen and thyroid function has some interaction).

You may want to look over at the thyroid Uk forum on health unlocked. There is masses of advice there- I have been on a health discovery this past year and I didn’t realise how important it was to

Overall Health as well as fertility. It’s been a game changer.

Good luck x

Rachael_ profile image
Rachael_ in reply to Saya85

Thankyou so much for this i had my thyroid checked a few months ago and it was perfect the doctor said he had instruction from the clinic that it needed to be under a certain amount ... ive just been casualy sticking in my repeat prescriptions every 55 days or so and getting more pills... i never even give it a thought before all this .... i will certainly be taking your advice I just think that could be a possibility and the meds and the pregnancy made it shoot right up ... ive read online that the increase of tsh levels can increase the chances of , chemical pregnancy, early pregnancy loss or an unsuccessful cycle ... now maby my thyroid was perfect ive been takin my pills as i should looking after myself and it was something unexplainable but ive looked into this now and need to make sure if theres anything i can do for my frostys ill do it so keep them safe ❄️ xx

Saya85 profile image
Saya85 in reply to Rachael_

Yes absolutely- it’s such a minefield and you would think your clinic/GP would know and be instructing you but often you really have to manage and keep on top of things yourself. Always have printout

Def have vitamins checked too.

It’s a fine line between being proactive and overworrying but you seem very levelheaded so I’m sure you’ll be fine ☺️

I feel like the same affected me even though I did up my meds straight away After transfer - but I don’t think it was enough. I’m annoyed that something that I thought was well in control might have turned things upside down last minute. Will def be rechecking everything again

Also- **** point to note ****

Tsh can be artificially elevated in early pregnancy due to hcg levels- so u cannot look at tsh alone. The baby needs your t4 thyroxine (the hormone meds we take) therefore you need to test both tsh and Free t4 (not total t4) at the very least.

AnnieAnnie profile image
AnnieAnnie in reply to Saya85

Saya85 this is interesting about the other vitamin deficiencies. Do you know why vitamin deficiencies are common with having issies with the thyroid? xx

Saya85 profile image
Saya85 in reply to AnnieAnnie

Hi Annie.

If you search thyroid Uk forum on health unlocked you will find mountains of advice and knowledge regarding this. It is a complex issue,

I’ve listed below some of the common causes;

1) some are associations- many hashimotos /hypothyroid patients are found to be vitD deficient.

2) One autoimmune conditon can trigger another - or increase risk of another. Pernicious anaemia is a common one assoc with hypothroid - which causes a severe b12 deficiency.

3) ‘Leaky gut’ is a theory that suggests a compromised gut allows gluten and other inflammatory foods to trigger the immune system. A lot of food sensitives which then lead to cutting out foods and certain vitamins.

4) disturbed gut flora/infections/ lack of probiotics etc lead to malabsorption of vitamins and minerals from your food.

5) the most significant one I feel after gut disturbances is low stomach acid. Hypos tend to have lower stomach acid and therfore find it difficult in particular to digest protein -animal protein in particular which is our biggest and most easily absorbed source of things like iron/folate/b12.

6) pituitary/adrenal/hypothalamus all work in conjunction with each other (HpA axis) therefore adrenals can affect thyroid and vice versa. Cortisol/cholesterol/vit C etc are all important to be balanced. Good adrenal function helps thyroid (and vice versa)

7) liver is extremely important for thyroid hormone conversion and storing certain vitamins etc liver is often affected with hypos and becomes sluggish or overworked. Therefore needs extra support.

This is not a foolproof explanation but tried to summarise the main things.

A lot of people in western world are quite deficienct/sub optimal in a lot of vitamins (causing fatigue/stress/numbness/pins needles/ acid reflux/ etc etc)

But in a ‘healthy’ person you may be able to absorb the downsides of this. In a compromised hypo patient these deficiencies are exacerbated tenfold as our bodies are already struggling to maintain normal metabolism and function. These vitamins are all needed for good t4 thyroxine conversion to active t3- so makes sense someone who has poor vitamins would have sluggish thyroid.

Phew- takes breath- lol hope that helps.

Sorry for the long post Rachael_ on your thread but this might help you too to see where you could improve your own health and fertility too x

Rachael_ profile image
Rachael_ in reply to Saya85

Oh don’t apologise or say sorry your advice is very helpfull this as has made me realise what i need to do for my frostys ❄️❄️❄️ giving them the very best chance and me been at my very best in health 💖 xxx

Saya85 profile image
Saya85 in reply to Rachael_

Aww I’m glad I could help. When I sorted things out it was a complete life changing experience. Who knew vitamins could do so much lol.

Just another point I just read on a forum.

“According to Drugs.com, yes, thyroid medications (both Levo and Armour NDT) or naturally generated thyroid hormones react adversely with both progesterone and estrogen. They both compete for thyroid binding globulin (TBGs).”

Rachael_ profile image
Rachael_ in reply to Saya85

Puts it all into so much perspective that thyroid deffinetly needs checking on a regular accurance 👍🏻 xx thankyou lovely 💖

Rachael_ profile image
Rachael_ in reply to Saya85

Thankyou for this i really do appreciate it x x

misswinky34 profile image
misswinky34 in reply to Saya85

I agree, I don’t like to disagree with dianne either but the nice guidelines say you have to have blood tests every quarter of not sooner. My endo never lets me go over six months without a retest, and I had two med increases throughout the 9 month pregnancy.

Rachael_ profile image
Rachael_ in reply to misswinky34

❤️ xxx

Rachael_ profile image
Rachael_

Thankyou so so much I’ll deffinetly be checking with my gp after my holiday and on my FET be making sure its perfect before transfer and straight after .... Xxx

AnnieAnnie profile image
AnnieAnnie

Hey Rachel_ sorry to read about the hard time you are having x The thyroid is really important and my GP told me that if its not functioning correctly, it can be the cause of issues with conceiving and if you get pregnant, it can be the cause of miscarriage. Mine was over the recommended reading for conceiving (I think it needs to be 2.5 and below) and it took me a few months to get on the right dosage. When we didn't get our nhs funding last year for ivf, we went private and before starting my cycle, my consultant wanted to test my TSH levels, luckily he did as I needed an increase. Before starting any cycle, I would now get it tested and, if I ever fall pregnant, I would definitely get it tested again. Apparently if you are having private treatment, GPs don't like testing you for something that is assisting that but I just say I've been feeling tired and run down and it is the first thing they test now xx

Rachael_ profile image
Rachael_

Thankyou for this ❤️ ... xx

Marietay profile image
Marietay

Aw Rachael please don’t be thinking it’s your fault or there was something u could have done! It must be so difficult but if medication needed to be upped etc. Your clinic would surely have told u. Hope you’re okay 💕 xxxx

Hope2BP profile image
Hope2BP

Hi Rachael, I started levothyroxine in 2004 and had a complete thyroidectomy in 2012. I had four failed IUI with clomid cycles between 2011-2016 before my first IVF transfer in 2017 at the age of 40.

I went through three failed IVF cycles before doing an endometrial receptivity analysis before a fourth cycle. It is a test that helps avoid implantation failure by establishing the best day for embryo transfer. I am now 41yrs and 17w1d with twins (one boy and one girl)! I believe the test provided vital information for my doctor to plan my cycle.

Information on ERA can be found at: igenomix.com/tests/endometr...

Don't lose hope based on your thyroid issue. I know it's not easy, I felt the same way through every failed attempt. I wanted to blame it on something and I didn't know what was wrong. I continued my levothyroxine as prescribed, even though dose modifications throughout the years. Once, I had a confirmed pregnancy I was instructed to adjust my meds by alternating between one to two pills every other day.

I hope the best for you on your journey to conceive. Keeping you in my thoughts. Greek free to reach out if you have specific questions.

Rachael_ profile image
Rachael_ in reply to Hope2BP

Thankyou xx

SnottyCow profile image
SnottyCow

Hi Rachael, I’ve had 3 chemical pregnancies so I understand your anguish. I’ve also had many rounds of IVF where nothing happened at all and 2 healthy pregnancies.

If you’re worried about your thyroid levels then by all means get them checked but I have a friend who has a thyroid problem, she struggled for a few years to get pregnant then as soon as she started thyroxin it happened fairly quickly for her....... so I know taking Thyroxin wouldn’t be a hindrance to IVF more like a help.

Sometimes there is no rhyme or reason for these loses, they’re just part and parcel of our journey. It doesn’t make it easier I know. It’s a tough road and we need an even tougher skin........ keep going, you’ll get there xx

Rachael_ profile image
Rachael_

Thankyou for this ❤️ xx

Suzannah1985 profile image
Suzannah1985

Hi Rachael,

Looks like you have had a lot of good advice, and that a good many of us are battling with thyroid issues!

I too am hypo, and after 3 failed rounds, it has been ‘discovered ‘ that my thyroid issues are autoimmune, so more drugs to help support any chance of implantation.

I would take the positives that you achieved implantation and get a full spectrum blood test done to put your mind at rest ahead of your next cycle.

It is so tough and the IVF drugs do cause havoc for the thyroid, I did 3 rounds in 12 months and have just had a six month break to let my body rest before a FET. In that time my thyroid has enlarged and I am convinced it is because of the meds.

So my advice is keep an eye on it and be pushy if you need to be. You didn’t do anything wrong in your last round xx

Rachael_ profile image
Rachael_

Thankyou for this I’ll deffinetly be keeping a close eye on it from now on .... like before meds .... on meds...... transfer...... and most deffinetly after transfer.... i need to focus on something that could potentially help instead of why did this chemical happen .. why did it implant and then give up ... it sends your head west its so hard esp when you had so much faith in it working... im so scared of this happening again and i dont want it to be in the back of my mind all the time 💖 thankyou for your advice .... Xxx

TBB21 profile image
TBB21

Hi.

I had an under active thyroid diagnosed last summer before I started IVF.

I’m fast discovering that even the experts know little about the combination of the two issues.

I read a book called “Your healthy pregnancy with thyroid disease” and as much internet stuff as I could find.

This led me to get my TSH down as close to 1 as possible before starting stims and seeing my GP as soon as I got a positive. The plan was then to be tested every two weeks in the first trimester to ensure TSH below 2.5.

I thought I’d done everything I was told and everything I could. It wasn’t enough. I miscarried a heterotopic pregnancy - lost a uterine pregnancy I’d seen a heartbeat for and then a “hidden” ectopic ruptured and I nearly died. This was only five weeks ago.

My TSH was up past 6 when the GP tested it at 4+6. They increased my dose but it wasn’t enough. I fear that the high dose stims (I was on the most aggressive protocol as poor responder) sent my TSH loopy way before the pregnancy itself implanted.

My situation was v unusual (heterotopic twins are apparently 1 in 30,000 and that will have probably impacted the TSH too) but I don’t think I would have miscarried the uterine pregnancy if it hadn’t gone so high so quickly.

I won’t be listening to the endocrinologist again who I specifically asked if I should take an increased dose on pregnancy BEFORE I could get the early blood test. He said no, just wait to see what the test says. Those few days might have made the difference to me.

My advice is get tested DURING stims, within a day of BFP and arrange a higher dose to take during the stims period. I think an extra two doses a week equivalent is recommended.

I hate the not knowing, and I hate the lack of control, and I hate the fact you have to advocate for yourself between the GP and the fertility clinic and the endo, but when I’m cleared to go again (six months apparently after my laparotomy - awful) I’ll be even more forceful than I was before.

Please do message me if I can help.

Louise

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