Gutted. After 17 days of patches, injections, and just started cyclogest and Lubion injections ready for a transfer early next week, I just had a phone call from the clinic to say they had cancelled my cycle due to high Thyroid results and high antibodies.
At a recent scan I was told my lining was 8 and looking really positive. Now I've just been told to stop everything. Take a letter to the GP and speak with them.
Does anyone have any idea what "High Thyroid results and Antibodies" means or what the implications are for ivf, what may have caused it etc. I'm none the wiser. I really pushed for this test because I simply wanted to rule everything out. My consultant didn't want to do it. If anyone has any info on this or had/ has it please can I get some info.
Am so sad and totally gutted, and yet I shouldn't be as I still have my little embryos left. Was just really looking fwd to my transfer next week and thinking positive about the possibility of being a mum x
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Music1
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Hi there. Firstly, really really sorry you have had your FET cancelled so close! IVF is horrible with these big ups and downs on the rollercoaster, I am really sorry. We get ourselves so geared up, and there is such a lot of prep.. it is horrible when this sort of thing happens.
On the thyroid front... I think to be honest, at least it's been found, and by treating it you can increase your chances. The 'thyroid result' they are talking about is TSH. It gives an indication of how hard your thyroid gland is working. You can have a 'normal' result, ie normal for the population, but if it is above 2.5, they advise going on thyroxine to up your chances for conceiving. Mine was over 3, (still normal for people not trying to get pregnant!), but I went on leovothyroxine a small dose daily, and it came down nicely to under 2.5. No side effects at all, I just took levothyroxine 25mcg daily. My GP hadn't heard of this, but there is a RCOG (royal college obstetrics and gynaecology guideline) about it, and I can try find you the link.
Re the antibodies... mine were ok, so I am not so sure here. I think in the past they thought about putting ladies on prednisolone if the antibodies were high, but I think this has gone out of favour. Hopefully some ladies with positive antibodies will drop you a line on this thread. In the longterm, if your tsh is raised and your antibodies are positive.. it may mean that in later life there is a possibility you may develop a more obvious under-active thyroid and go on to thyroxine long term. Is it in the family? Underactive thyroid is an 'auto-immune' thing.. some of us make antibodies against our own thyroid, and this can lead to it having trouble, and eventually being underactive.
I also seem to remember something about ensuring your selenium levels are good when you have thyroid issues.. but that 6 brazil nuts a day will do the trick! And it's in most multivit tabs..
We had another thread about this recently, and another lady posted useful links to the British Thyroid Society/similar name.. so hopefully this lady will see your post too.
It's just come as a huge blow as everything seemed to be moving in the right direction and looking good.
I'm not sure what my results look like - they haven't been emailed to me, so I'm just trying to get my head around things and develop more of an understanding of what may cause it and what implications it could have on ivf if I'm on treatment etc. Did you have any symptoms and how did you know you had it please?
Have been taking vit D tablets, pregnacare tablets and eating brazil nuts for the last month. I've just started drinking Pom Juice. I don't know if it's in the family. I lost my mum to ovarian cancer a few years ago, and another member of my family has stage 3 Non Hodkins lymphoma. Not many of us left to ask anything.
I guess it depends on what my results are like and treatment etc, but how long do you think it would take to sort out and start ivf again. They mentioned going on steroids as well. Beginning to feel like a black hole and age just keeps ticking on.
Thank you so much for your reply. It means a lot x
So sorry to hear about your Mum and other family members. xxx
Also frustrating you are bit in the dark as to your actual result. Hopefully just mildly raised like mine was. Am really surprised you've not had a TSH before now to be honest. It's usually standard work up.
I didn't have any symptoms, and I think most ladies with mildly elevated TSH won't. I didn't notice any change being on the thyroxine, nor on stopping it again.
have you had your vit D actually checked? Mine was very low and I had a supercharged course from the GP for 7 weeks.. but sunshine is now here so hopefully you are getting topped up!
My thyroid was fine after a month of treatment if I remember rightly. I think the steroids would just be for around transfer time/2week wait/onwards for a bit if you are successful.
Hang on in there. I think after a month of thyroid tabs you'll be most likely good to go again. And it's also just 'trying to optimise everything'.. unlikely it's the be all and end all...
I don't think I have had my vit D tested. My last set of bloods back in Feb for HIV, and general bloods for anemia, and all those other things they test for before you start came back fine.
Thanks for explaining things a bit better. I didn't get anything from my clinic. They couldn't get off the phone fast enough.
I will try and stay positive then. x I thought it was the end of everything (sob)
No, do stay positive! Just a fine tuning and will increase your chances now found! Minor blip in the road.. but so sorry you been through such a stress, and unnecessary waste of time and money on your drugs etc xxx
Coracle, I've tried to include the results from my test to the top of this post. Would you be so kind to see if any of it makes sense please and what it means. Kind regards x
Hi there. Your tsh is up slightly, even for a 'normal' person. If you weren't ttc, most GP's would recheck in a month or so. Sometimes it comes back into range. But as you ARE ttc, then definitely should be treated to get it down to less than 2.5. I would be optimistic it would come down nicely quite quickly with a small dose levothyroxine. The fact you are positive for 'auto-antibodies' makes it more likely that you are perhaps going to progress to be 'properly' hypothyroid in later life but it's just been picked up early now. If anyone else in your family suffers with tiredness/dry skin/feeling cold/constipation/depressed etc be worth them getting their thyroid checked!
your t3 and t4 (the thyroid hormones themselves) are in the normal range, but this is because your thyroid is working hard. The TSH goes up to tell your thyroid to work harder.. so the more your thyroid is underperforming, the more the tsh goes up to 'whip it harder'. TSH means 'thyroid stimulating hormone'. Therefore, your thyroid is under a bit of strain at the moment but keeping your thyroid hormones in the normal range.. therefore you may not have noticed any symptoms.
I think you asked somewhere if your ivf drugs could have caused this. No. Not to my knowledge.
Been trying to find you that RCOG guideline, can't find it yet! But I see other folks on the thread have given you the NICE guidance/thyroid society. will try post you the rcog guideline when i find it. I don't think you will have a problem with your GP prescribing thyroxine, and as we've all said, a big cause for complaint with your ivf clinic to give you refunds. BUT optimism for the future that this can easily be sorted out, and give you better chance for the future. xxx
Thanks Coracle for putting my mind at rest regarding having this test done on top of all those hormones/ drugs. I did wonder.
You and Saya85 are an absolute Godsend (along with this site). Looking at the symptoms I'd say it was def Hashimotos - although, I've always been told by my GP it was due to 'not eating enough correctly, ibs, depression due to failed ivfs. I've been trying to phone the GP for an apt, but as they only have locums they think it's more likely to be around 2wks as it's not an emergency. I will try again in the afternoon, but without your or Saya85 info, clarification and ideas etc I think I would have been going out of my mind with worry. My oh had to really push for these results yesterday.
Thank you soooooo much for everything both of you. I will try and print some info that you've provided for me, go in armed and a little more prepared than I otherwise would have done and keep you posted with anything new. Thank you, Thank you, Thank you. x
Well done you Music1, I think you're coping amazingly. And like other folks here, I was more than a little annoyed with your sister suggesting that any of this is your fault!
re GP delay to get an appointment.. I think perfectly reasonable to ask for a phonecall appointment in the coming week, or with the duty doctor of the day, as you'd like to get your thyroid meds started and not have a 2 week delay... most practices have a 'duty doctor' every day and we regularly handle things like this.
I would say something like 'You might know I'm having ivf treatment. My TSH has come back over 4, and my fertility consultant says it should be less than 2.5.... He says to let you know that although this may look like not a significntly raised result which you might not usually treat, this is current NICE/RCOG guidance for ivf patients and you may not be aware. Please could you start a small dose of thyroxine as recommended and have a recheck in a month?' (you can also mention the raised thyroid antibodies)
hope you don't mind me summarising/making the suggestion! xx
another option is your ivf clinic doign you a private prescription for thyroxine.. that was what mine did for me, but I didn't use it and asked my GP because I have a pre-payment certificate and so get nhs prescriptions free... but some GPs may take a very hard line saying it is all part of your private ivf, so should be a private script.. but I would hope not. x
I'm sorry to hear about your cancelled cycle! But I cannot believe they didn't rule out thyroid to begin with and were reluctant to do so?
Thankfully my clinic are very proactive with thyroid testing - I was already under active thyroid but my GP wouldn't test for antibodies. Thankfully my IVF consultant did (my levels were 523! Normal range is 50)
If thyroid peroxidase antibodies were tested and yours is high- it is likely you have a condition called Hashimotos which is an autoimmune thyroid condition (biggest cause of under active thyroid)- you should find lots of information on this online but best to get it confirmed with GP first.
You will likely take thyroid medication regularly but this will keep everything in your body in check and massively increase your chances of getting pregnant. And more importantly to avoid miscarriages- so it's good that they picked it up before transfer!
Thankfully it is very simple to treat and get your levels down ready for IVF but it will mean you need regular monitoring through pregnancy (as the baby relies completely on the mother for thyroid hormone)
I agree with everything else coracle has said - so pls don't panic too much. There are also ways to control the autoimmune element of Thyroid issues with diet (often cutting down on gluten and other things) and supplements as coracle suggested.
Word of warning though- let your GP medicate you with levothyroxine (your tsh needs to come down to below 2.5 for IVF) but if you're expecting more answers from him youl prob be sorely disappointed.
A lot of Gps and doctors are quite clueless when it comes to thyroid conditions and management- so you will need to research later yourself
Pls don't let this worry you though and good luck xx
Nope! The IVF consultant didn't even discuss it and dismissed the results as 'just autoimmune'. I had already read up on some treatments and often they won't do anything about it (and I didn't want steroids anyway so I didn't push it)
I read up a bit on steroids, and to be honest I think it's a difficult decision.. they now seem to be thinking steroids might decrease your chances for other reasons... But good luck with your research and I hope you have an ivf consultant you can trust next time perhaps.. or can have a better conversation with the current one. xx
Would you suggest steroid treatment in your opinion? I've just heard so many horror stories and patients of my own who have been on steroids that I just feel it would be a never ending black hole of further problems.
Thanks for your reply! Will def look into it. My GP just said I will be monitored closely under consultant care if I get pregnant - but I feel it needs care before I get to that stage! (If I ever do!) thanks again... C
Hi. I think steroids generally for ttc for ivf are going out of fashion.. I read quite a bit about it after 4 failed cycles and was put off the idea. I'm also concerned what it does to the developing baby!! But I am not sure in this area of thyroid auto-antibodies. But I suspect there is little evidence either way. If it was me, I'd probably just make sure my tsh was ok, and keep eating the brazil nuts! But that's just my two-pennyworth.. not done extensive reading on it... xxx
If they don't think we should do anything about the anti-bodies, why on earth do they get us to test them?! My ivf consultant was keen on my getting antibodies tested when my tsh came back a bit high.. seeing her soon.. will ask what she would have suggested if my auto-ab had been high.. x
That would be interesting to know too. I think it's often used more as an indicator that it will likely progress your thyroid condition and it is worth medicating you earlier than someone with straight forward sub clinical hypothyroidism (they often wait until they are symptomatic )
Also the likelihood of other conditions developing and risk to pregnancy higher- so maybe more monitoring.
If I could actually get a hold
Of my consultant I would ask these qs but it's so difficult.
Ah yes, was getting so 'ivf focussed' forgot to keep my wider goggles on! Yes, you're absolutely right.. if tsh up a bit, then good to know what your a/bodies are for future reference... but not sure they can do anything about it pre or post conception if steroids now out...
Saya 85, I've tried to include the results from my test to the top of this post. Would you be so kind to see if any of it makes sense please and what it means. Kind regards x
I've had a look at the results and will try and give you a little more insight from the little i do know about thyroid conditions. I do want to clarify two things though before I do:
1) as I said this is all from my own research - and I do not claim to be a thyroid expert by any means! So please don't take everything I say as gospel especially if I make mistakes! Hopefully it will just point you in the right direction ☺️
2) please do NOT WORRY - a lot of what I will say will include words like 'autoimmune', 'disease', etc and would panic a lot of people. However the thyroid is a funny thing and often these words in the context of thyroid are not nearly as serious or as alarming as someone might think. So pls don't worry and talk to your GP / specialist about it.
So back to your results- brace yourself - this is going to be a long one!
------------------------------
>> TEST RESULTS
Firstly wow- yep, there's definitely a LOT of antibodies.
Both your TPO and thyroglobulin antibodies are very high. My TPO was 500 plus also)
The other results are relatively normal (TSH is just out of normal range)
>> DIAGNOSIS?
It definitely appears to point to autoimmune signs- and most likely Hashimoto's thyroiditis which is the most common cause of under-active (hypo)thyroidism.
Hypothyroidism also often has far less serious/dangerous consequences than an OVERactive thyroid- so that's the good news ☺️
((Symptoms of hyPOthyroidism can be fatigue, weight gain, mood problems, memory problems, aches pains etc (woohoo!) and it can be months/years before Hashimotos progresses to the point it affects the thyroid significantly.))
You mentioned you were fairly 'fit and healthy' and by looking at your free t4 and TSH levels it suggests that your thyroid is actually still 'functioning as normal' hence no real side effects yet (great news again) which is why clinic probably didn't suspect it (wrongly)
However the high antibodies does suggest that in future your thyroid will continue to get damaged (antibodies attack thyroid tissue) and you may likely start to notice symptoms in future years and become more hypothyroid.
**IMPORTANT**
- Your TsH level (over 4.0) may be considered 'normal' in terms of general population but for IVF, as discussed elsewhere in this thread, TSH needs to be below 2.5 (read/ show GP NICE guidelines posted on this thread) to limit risk of miscarriage and infertility. If you do become pregnant your thyroxine will also be increased rapidly to supply the baby's' thyroid.
>> TREATMENT?
As already discussed earlier there is little (we believe- but check with specialist) they can do to treat autoimmune thyroid conditions - steroids are not routinely given so not sure if that's what the clinic was hinting at. Steroids can also have a lot of side effects so you'll need a thyroid specialist/ endocrinologist to look at that- ask your GP to refer you.
However it would be reasonable for your GP to also start you on thyroxine treatment to bring your TsH down- 25mcg most likely to give it time to settle. Takes usually 4-6 weeks to kick in.
----------------------
>> DIFFERENTIAL DIAGNOSIS
1) Graves' disease (don't panic@ disease!)
High thyroglobulin antibodies (and high TPO) could also point towards Graves' disease ( an OVERactive thyroid condition) so please discuss with your GP.
Thyroid receptor (TrA) antibodies are usually affected by GrAves and so would be a more definitive test.
I think it's less likely to be graves but look/research its symptoms to see if you have any of them - this would be a good indicator to help diagnosis.
( NB** Hashimotos can actually display signs of both overactive and under active thyroid (yes it's an odd thing! depending on the levels of hormones)).
2) Thyroid cancer (don't panic again!)
Thyroid cancer is usually self limiting (does not spread etc) and is usually quite benign- often people will have a thyroid cancer nodule or tumour for years and have no side effects and don't need treatment. But it would be useful to rule this out given your age, family history, antibodies level etc and if they do treat it with surgery/ radioactive iodine or radiotherapy or anything like that it will obviously have complications for IVF/pregnancy etc
It's usually very slow growing and often women who've been diagnosed with it during pregnancy can often be treated much later after birth- so again DO NOT PANIC!!
(It is unlikely you even have it but I brought it up so you could talk to GP)
----------------------
>> CONCLUSION
I would arm yourself with as much info as you can handle- do not obsess over it! So many things overlap with other conditions and the symptoms are so far ranging that you could easily get overwhelmed.
The main things you want the GP to do are:
A) get the TSH down to below 2.5 - start you on thyroxine.
B) push for a referral - you would need to be under consultant care with endocrinologist/gynaecologist during pregnancy anyway to monitor thyroid so get the ball rolling- you need further tests!
C) main reason for referral is to discuss treatment options but I would push for an ULTRASOUND scan of the thyroid - to detect nodules/cancer also.
Sorry for the long post! I tried to break it up so would be easier to read. Again I hope I haven't panicked or overwhelmed you- ultimately you need to see your GP as soon as you can- do you have an appointment yet?
Hopefully coracle or sunonarainyday may be able to shed more light or correct me if I've said anything wrong so far.
Thanks Saya85, you've both been wonderful. People such as yourself and Coracle are an absolute Godsend (along with this site). Looking at the symptoms I'd say it was def Hashimotos - although, I've always been told by my GP it was due to 'not eating enough correctly, ibs, depression due to failed ivfs. I've been trying to phone the GP for an apt, but as they only have locums they think it's more likely to be around 2wks as it's not an emergency. I will try again in the afternoon, but without your or Coracles info, clarification and ideas etc I think I would have been going out of my mind with worry. My oh had to really push for these results yesterday saying it was unfair to tell us something was wrong and then provide nothing to go on.
Thank you soooooo much for everything both of you. I will try and print some info that you've provided for me, go in armed and a little more prepared than I otherwise would have done and keep you posted with anything new. Thank you, Thank you, Thank you. x
Aww you're welcome ☺️ I know how frustrating these things can be.
Thankfully for the most part it can be treated and hopefully will help with your future IVF journey xx
Also this site supposedly has a wonderful thyroid uk support forum (I have yet to try it) so if you need specialist help before or after your appt then maybe post something on there?
Good luck again- will look out for your progress x
After having a failed 4th attempt with DE and a day 5 transfer I would have signed up for any test under the sun to try and figure out what happened. Thank you for explaining it. I have been so worried, especially as they wouldn't tell me anything except "contact the GP asap and start on steriods".
I REALLY had to push hard for this test at the clinic. She said "you don't need something like that, you look well and fit, but if you pay". I didn't even know what it was, but said I wanted to rule everything out I could think of. Sad to think that if you don't personally suggest things yourself nothing would have happened and it could have ended up in further heartbreak and an unexplained BFN. I wish they had done the test on the day of my scrape (which was originally planned, but she failed to write on my notes). It would have saved weeks of patches, tablets and the build up.
Are you trying ivf, and if so, has this played any role in the outcome etc?
Did you also have steriods?
Thanks for suggesting the levothyroxine. I don't have a regular GP at the moment as he left the practice and we just have locums. Will be interesting to hear what they say. My last apt for bloods she said "oh, I see you have had ivf. How many children do you have now". She didn't read my miscarriage notes.
Thank you so much for reading my post, I am so greatful. Best wishes x
Oh gosh I'm so angry reading your post and my own experience!
I cannot believe we are dealing with 'professionals' and yet WE'RE the ones who have to ask the right questions at the right time!
They should have looked at all possibilities esp with multiple failed attempts! Gosh.
Do you know how high your antibodies were ?? When I asked the consultant about my 500+ result she just dismissed it as yes that's your autoimmune nothing we can do about that. Sorry that's BS!
Like coracle I think steroid treatment is somewhat outdated? It may depend on your levels- but if you have no symptoms it might not be worth it as steroids have their own side effects! Levothyroxine will def control the tsh at least.
Apparently gluten molecules mimic thyroid tissue (almost identical) so it often exacerbates an autoimmune response- I would def start on supplements and diet changes anyway as it shouldn't do much harm but will take time to kick in and help.
Thyroid hormone tablets take 4-6weeks to kick in- so get onto your doctors surgery ASAP xx
Also autoimmune very often runs in the family (and generally women) may be worth asking other members of family- and if they have symptoms of thyroid issues or assoc symptoms (excess fatigue, difficulty losing weight, very sluggish and memory problems, infertility and other symptoms) do encourage them to get tested also
Often it is linked to other autoimmune conditions like rheumatoid arthritis etc so family may have one of these conditions and not been diagnosed with the thyroid part yet.
Be warned the autoimmune part kicks in a LOT earlier than symptoms start!
So you looking 'fit and healthy' doesn't mean you don't have it. And obviously you were proven right- hopefully they can get it treated early enough x
And their inability to read their own notes prior to your consultation is so frustrating. You have to be so on top of your own medical records and treatment!
I'm so sorry to hear that she asked you about children without reading your notes.
Both my sisters had some light bleeding in early pregnancy - without even asking any questions or testing or anything the GP flatly said "oh you've had a miscarriage" and basically go home nothing you can do!
Luckily one sister forced herself into A&E and ultrasound showed baby was fine!
Other sister had already had bleeding in previous pregnancies so ignored the GP - but how awful!! Makes me so angry
I am really really concerned your clinic does not test TSH as standard work up. I have been at two clinics (which do NHS and private work) and it is absolutely standard and essential right at the very start. I have to confess I am a GP by the way and I think you are completely in your rights to complain. Is this an NHS funded cycle?? (I am hoping you have not spent lots of money on drugs..)
I would also expect the fertility clinic to guide the GP in dose of levothyroxine! This is a specialist area, so as Saya has said, not all GP's will know about it. I will try find you the RCOG guideline so you can print it out and take it to your GP with you just in case. My GP was a little surprised by my needing thyroxine with 'normal' TSH results, but once I explained about the RCOG guideline and my ivf consultants advice, he was fine.
Ah you're a GP! Lol I hope I haven't offended you with my previous comments. My Gps are wonderful in so many ways but there is definitely a running theme with little knowledge about thyroid issues.
I am in healthcare myself and only because of my own research and basic knowledge of medicine have I managed to push for diagnoses and management of so many things.
I can't help but feel sorry for those with very little understanding of medicine who probably have been overlooked.
It's sad- often the willingness and ability is there but with time pressures etc things often get missed or overlooked so easily.
I absolutely agree about thyroid testing being essential- and very shocked they haven't performed it as part of her initial
No, not at all, I fully apologise for bad experiences folks on here have had with their GP/other medics.. and I know I'm not perfect myself! Some things in 'thyroid world' are a bit controversial though.. lot of different opinions.. But regarding this situation, the ivf clinic should certainly be clued up on the basics.
Be interesting if there is anything on HFEA re TSH being essential as part of work up... I know my local fertility clinic will not accept a referral from me without a TSH!
My only wonder is if Music1 you had a normal one at the start, before your fresh cycle. But it is good to repeat it if time has passed, glad you have found out!
If you are having an NHS cycle, these tests should be free.
I was having a private cycle, but my kind GP did the tsh and then the antibodies for free.. altho we had to persuade the lab, considering my tsh was in 'normal' range... but once my GP got his head round it, he was on-side.
This is a private clinic and I think we've spent close to 11K on DE, treatment and recently another £500 on drugs, scans and this TFT. I know it's not about the money really, but when you've been on drugs for the last 3 weeks, paid for a 'Scratch' under anaethetic because there are problems with my cervix not being straight etc. I just wish they had done this on the day of our first conversation rather than leave it to a few days before transfer. She said that I couldn't have my TFT bloods done on the day because I needed to have fasted and I'd had some water - it was early in the morning and we'd set off at maybe 6am for a 9am apt. Just so disappointed they didn't rule this out earlier. My consultant wasn't worried about it at all. It was almost as if she was expecting things to come back fine, so why was I worried and kept mentioning it etc.
I'll keep you posted with any info I get back from the clinic. So nice to hear that you're a GP and therefore in the 'know'. I value your feedback so much more than anything from my consultant at the clinic now, which is sad. Thanks x
This is absolutely terrible and I think you are completely in your rights to complain and get refunds, also for your (presumably failed) fresh cycle!!! I will find the list of required bloods from my clinic...
We were having a DE cycle. The first one ended in a BFN, this was going to be a FET. Yes, it's in the UK. Without mentioning specifically ... where they recently had the the tragedy with the concert. If you see what I mean.
Erm I've never had to fast for any of my thyroid tests! So I'm not sure if that's distraction tactics from your clinic.
I think you have a good case for them
To honour a free cycle when you do resume treatment!
Gosh I hope now they will actually investigate and manage properly x
P.s my cervix had been 'pushed' to one side - they assumed because of OHsS swelling but im sure in smear tests it's never been mentioned so now I don't know if that's normal for me or not! I had embryo glue performed but not the endo scratch - now wondering if that's another thing to think about.... It was a very difficult transfer 😞
I don't think thyroid testing is a required test. But any clinic worth their salt would rule it out and investigate esp if failed attempts as thyroid is so important in pregnancy regardless.
Yes, forgot to say that.. NO need to fast for thyroid tests!!! (unless they bundled in a sugar check for you at the same time??) Like Saya, I am very angry on your behalf... will gather the guidelines for you to support your complaint and hopefully some refunds!
Thank you for consolidating what Saya said regarding 'fasting'.
I was feeling a bit fobbed off after the initial meeting. It's a long way (3+ hrs) for us to travel to the clinic for a conversation, so we asked if it could be done whilst we were there. I'm not good at complaining but I'm just so sad and dissappointed with them. I would def ask for a new consultant after all this. x
Interesting. Thanks for that. Am so glad I had my oh in there with me to witness her "sorry we can't do that now because you're supposed to fast and no have anything". My oh said "she's just had water".
It's a shame I didn't have a tape recorder in there with me. In fact, the time I had the test, I'd eaten a sandwich in the car before I went in and they said that was fine.
I thought it was just me cervix that was 'bent to one side'. I had transfer under anaesthetic for this reason, and embryo glue. I would def recommend scratch, embryo glue. Button (who I talk to on this site) recommended I ask about Lubion injections as well. Which I had just started. Will keep you posted x Many thanks
I don't care what the thread looks like It's just so lovely to have wonderful people like you and Coracle just giving me some info and talking with me. My clinic couldn't get off the phone fast enough and that just left me in tears and desperate with questions. I thought it was the end of everything, and then I thought maybe with something like that maybe it's best if I don't try and get pregnant or have a child etc.
Thanks for the suggestions on vitamins etc. Maybe I will increase my vit d vitabiotics to more than 1 a day. Thank you for the timescale. I know mine may not be the same, but when you've been trying for years and moving from 1 date to the next and putting your life pretty much on hold it gives you some idea of what to expect or at least hope. I'm nearly 43. Been trying since I was maybe 37. I told myself no matter what the cost, treatment etc. I would do everything the clinic told me to, so I could have a baby for my 40th birthday ... a present for me and my oh. Stupid isn't it. All I do move from one month to the next.
Thank you SO MUCH. I appreciate everything you have posted on here for me.
Hi.. After rounds of ivf and miscarriages my thyroid was tested and it under active.. They said in general population they wouldn't of treated it but for ivf I needed which is when got put on low 25mcg dose of levethyroxine and been kept on... Am currently 18 weeks pregnant so maybe it helped me.. They plan to keep me on it... No side effects. Good luck once they sort this and can move forward.. You must be very stressed.. I would be xxxx
Yes they believe that thyroid issues are actually one of the most common and most undiagnosed causes of miscarriages!
Often because if you're slightly on low side you may be a-symptomatic but a pregnancy could require as much as 50mcg or more of thyroxine, which would often put ladies just over the edge.
Very sad that it's not being looked at holistically 😞
Ah thanks.. Yes being monitored and they happy to keep me on low dose. Good luck.. Yes the thyroid should be looked at at beginning... Which my clinic didn't! Wishing you all the best xxx 🌼
I was initially stressed. Hearing that your cycle planned for early next week is suddenly cancelled because of some results for a test they didn't even want to do.
They gave me no info either... just print a letter we will send to you and contact your GP asap. I'm so greatfull to you, Coracle and Saya85 for your feedback. I have calmed down a lot now, just from reading them.
I had a miscarriage a while back. I would have hoped the new clinic would have tested knowing this. They were so confident that DE would work for us.
I think they said my antibodies and thyroid function were high. Is that the same as under active? Am so pleased to hear they are treating you and 18 weeks pregnant... crying again. I really hope everything continues to go well with your pregnancy. Thank you for some hope. x
Oh gosh I'm glad you're feeling better , and actually it has given me renewed energy to fight my corner now also!
Just to clarify- if you have 'high' tsh and antibodies it generally means that you are under active thyroid.
Tsh is thyroid stimulating hormone- it's released by the pituitary gland to stimulate your thyroid gland to produce thyroxine (t4). It works on a feedback loop... So basically if u r under active and not producing thyroxine the pituitary gland will secrete more and more hormone to kickstart it! Hence a high tsh level is not a good sign.
Similar with antibodies- if they are very high that means they are attacking your thyroid gland in large numbers- and effectively destroying thyroid tissue which makes it less and less efficient and therefore under active thyroid again.
Sorry if this confuses you. I recommend you read up on thyroid uk pages or google it for more simpler info/diagrams to help you better understand.
I have to say I'm sorry about your mums story and got relative with lymphoma... Given these are immune issues and conditions like lupus and so are also autoimmune I can't help but think there is possibly a causal link.... But it's a very complex thing so I don't wish to complicate it further for you
What it should mean is they take you seriously now and actually manage your whole case better!
Saya85 good with facts below re under active thyroid... Thanks. Very upsetting for you to have delay.. But this may help in the long run... I had 4 rounds with my own eggs but lost 3 babies.. I wonder if it thyroid or something else.. Will never know.. This is my fifth round and I changed clinics and went abroad and using DE now.. I found UK clinic to be a nightmare and spent 2 years tied to it due to package.. Was so happy with Greek clinic and so thorough.. Including doing regular bloods.. Wishing you all the best xxx 🌼
I've heard so many good things about overseas clinics but I am still fearful to try it just yet! Im going to try and get further tests on NHS first and weigh my options. Thanks x
Thanks Jaky76 I know you're right. I had 3 rounds with my own eggs, the last one ended with a miscarriage. The last time was fresh DE but also a BFN. That's why I pushed for the test. I was hoping it would simply rule something out. I'm so sorry to hear of your last 4 rounds. Absolutely heartbreaking. A simple blood test, and yet they don't do it, or ask if you would like it. I put my previous fails down to it being my own eggs, but after the DE it just made me ask questions. I know what you mean being tied to a clinic with a package. I wish we had decided to go abroad. I always thought language would be a barrier, but I've heard so many positive things. Thank you for putting things into perspective. I just had such a shock earlier. Best wishes x
I'm with coracle and can't believe you have t been tested before. I had mine tested before I was even referred to fertility and has some investigations put on hold until it was treated and it was under control. I'm in 100mg levothyroxine a day and it has sorted it out. Just about to start first cycle. I would be interested in a copy of the rcog guidelines too as i can't find them on the internet. It is good it is picked up now though as you need to be monitored when pregnant and your medication adjusted. I agree that they should repeat this cycle for free. X
I'm really feeling so disappointed on your case Music1. Also very angry bcoz thyroid function test needs to be done before hand. They should do this test during your very preliminary visits and baseline hormone test. Because they also need to see which dose is required for you. They can't start higher dose directly.
I am completely agree with Coracle. They want to bring it under 2.5 even though it's normal. In my case it was absolutely normal 3.3. My leothyroxine dose started with 25 micro up to 75. Then it came lower than 2.5. Then only they started my stimulation.
I don't know what is standard practice of your clinic but they could have done this test well in advance.
I'm affriad like you spending so much hard money still they make mistakes.
You are in my thoughts. Keep us updated. Wish you all the success.
Absolutely! I was NHS funded IVF so made some allowances on their behalf but I can't believe people pay thousands privately and get the same treatment- I would be horrified!
And what gets me is they treat you as a 'normal' patient and seem surprised when things don't work out or results aren't up to scratch- they do realise they are a tertiary service for people wiTh INfERTILITy problems don't they?? So why do they expect everyone to just follow the same protocol and require similar treatment.
Im sorry for my rambling- this will be my last message on here for today because I can feel my blood pressure going through the roof !
I just wish they had done this months ago, to rule things out and give the treatment a fair go. To come within days of FET and then have things suddenly halted. I had to really push for this test with my oh and it should have been done 3 weeks ago but she seems so laid back, as if "why are you bothering me with this, it won't be anything". Now it's .... surprise, can't talk. See your GP.
How horrible for your mother!! A relative of mine had a lump in her breast and severe
Pain and the GP wouldn't even refer her for a scan! Ridiculous.
Yes make sure you cover all avenues- it's a fine line between not crossing the consultants and getting them to do what you need but it's worth pushing sometimes- and now you've been vindicated they damn well should! Good luck again x
Just want to say a final HUGE thank you for all your posts, help, advice and reassurance and support. I've been in so much shock, sadness for what seems like something that could have been picked up on earlier. Will keep you posted/ updated. THANK YOU ALL SO MUCH xx
I have an interest in this as our yd is sub clinical thyroid which GP won't treat despite her ttc, 3.8 at the last private blood test. I think every GP who has someone visit them for ttc should do full thyroid and vitamin tests, especially D, B12, folate and ferritin and medicate according to the NICE guidelines of 0.5-2.5.
In one of the studies I found they inferred that miscarriage in hypothyroid patients is very low as not many of the group manage to achieve a pregnancy, so basically no worries!! I was fuming!
I'm quite new to this Thyroid thing and I haven't been given any blood info back or levels etc. I only insisted as someone on this site recommended I ask about it. I have a locum as my GP has left the practice. I wonder how/ if they will treat me or even bother. I wasn't aware of the NICE guidelines. I had blood work done for everything else but I believe this was the only thing they didn't test for ... including the possibility of Natural Killer Cells. My consultant laughed when I suggested "could it be my Thyroid or NKC and can I pay to get tested, even just to rule things out".
I can't believe their attitude with the study. That's devastating and I would also be absolutely fuming. If I'd been told this 4 and a half attempts ago ( half = last cycle cancelled last minute), I would possibly have never started this ivf journey, paid for repeat laps, had my tubes removed, gone through all this pain, heartache and spent I don't know how much money over the years. I would never have put my body through all these hormone drugs... especially as my mum passed away with ovarian cancer. I'm still waiting on the clinic for info/ paperwork to take to my GP. My sister said it's my fault, I should never have started the cycle with drugs etc and come this far without knowing the results - especially as I insisted on them and my clinic doesn't usually do them. However, when they tell you to start, it's tough to say "no, I want my test and results first". They are the professionals in all this. I'm so sorry to hear about your yd. How is she doing now?
If they agreed to do the tests they should have waited also for the results! If you had them done outside the clinic or in your own time fair enough- And for them to be so dismissive of thyroid testing shows exactly how inexperienced and ignorant they are!
Thanks Saya85 - I'm just feeling so useless at the moment. I know I should have insisted on getting the test and the results done first, but she was so 'dismissive' that I honestly thought I was phoning yesterday to hear the words "nothing wrong with them, we told you so".
You can print them off and take them with you when you go to your GP.
I don't think you have your results do you? If not then ask for a printout as they have to do so if you ask, they may charge a minimal fee for the paper etc, most don't.
Let us know what the results are when you get them, the Thyroid UK community on here are brilliant too, the NHS refer people to the site for info and they have some endo's on there who give advice on forum. They also have a list of supportive endo's in the UK you can ask to be referred to.
Don't let your GP dismiss this, getting your hypo under control might not automatically sort out your problems but there is a good chance it will help.
Please let me know how you go and don't worry, it'll be sorted!
Hugs x
Oh yd is still not ovulating but she's on inositol and eating more healthily and losing weight, she's typical pcos. Hypo causes cysts on the ovaries too and it wouldn't surprise me if all this is linked. My mum was hypo and yd is the spit of my mum, everything from mannerisms, looks, stature and even personality lol. I was an only child, Mum had a daughter before me but she was tragically still born, and even though they tried for another it never happened, this was in the 60's though; she took iodine back then bless her 😖
I'm waiting to see what the supplements and weight loss do over the next year, if that doesn't start her ovulating I'll be getting a private consultation to get thyroid meds sorted. Hey ho.
Thank you for everything. I will print out that info and take to my locum.
No, I still don't have any results or anything physically in writing. I was hoping they would just scan my bloods and give them to me so I could take them to the GP asap as they suggested. I keep checking the website and it continues to say I'm booked in for ET next week. I stopped all meds yesterday (as they suggested)- 3x estrogen patches, 2x cyclogest and Lubion injections for extra progesterone support. My body is beginning to feel like I've been hit by a bus and I guess my hormones are now all over the place.
I'm sorry to hear news about your mum ... so sad. I don't know what iodine would have done (positive or negative) but I bet she tried everything under the sun. Kind of reminds me of my mum.
You yd is so lucky to have you fighting her corner, keeping a watchful eye on things and thinking about getting her a private consultation.
Sorry just one more point- if your mum was also hypothyroid has your daughter been tested for thyroid antibodies? Since it could run in the family.
If she has Hashimotos and a tsh of 3.8 then that should also bolster your case for thyroid treatment. The only real negative of treating thyroid is that you can overdose and become hyperthyroid. But that can easily be monitored and tested with regular blood tests!
I don't understand why Gps are so reluctant to treat then. I would urge you to see a different GP and get these tested and treated as it should help with her weight loss and supplements too. A lot
Of hypothyroid patients seem to thrive when their tsh is below 1!
We had a private blood test done which included antibodies but they were really low (Anti-Thyroidperoxidase antibodies: 6.1 0-34 range, Anti-Thyroglobulin antibodies <10 range 0-115) so don't think it's hashi, we're going to do another one in 6 months anyway or so to check it as antibodies apparently don't always show up but with those results it's unlikely. Funny actually as she's been taking her basal every morning before getting out of bed to check for ovulation and her average temp is 35.4°C with no sign of ov! 😔
Not so @ovulstion. I was a ovulation also- even on strong clomid drugs! However my thyroid wasn't controlled at all and wasn't even getting proper periods. Once thyroid was better periods returned (still not ovulating) but there are many stories on here regarding lower tsh and ovulation.
Sorry did you say your daughter has pcos? If she doesn't and still not ovulating then you have more than enough reason to force through thyroxine treatment I would say. It's the only thing out of sync that could have a massive impact. Get a second opinion I would say - or a referral to fertility- gynae maybe more sympathetic (mine was and actually was the one who tested me for antibodies!)
We don't know but looking that way, her gp just says go away and lose weight. They've only been ttc for a few months but it seems she's not ovulating for whatever reason. Plenty of time as she's only 20, she's engaged, wedding set in 2019, they've just exchanged on a house so lots to look forward to, she's always since childhood wanted children of her own so hoping things sort themselves out, she's doing the right things.
I'm on here for our eldest daughter (32) who's just started her ivf journey, her hubby has congenital issues and had to have surgical sperm retrieval, they start their first cycle at the end of July.
Yes I read about that study also - how ridiculous! Something like thyroid is so easily tested and treatable and yet it's treated like an unnecessary inconvenience !
Not to mention how closely it is related to the adrenal system- one goes up the other goes down. With the high levels of cortisol and stress in our society who really thinks that thyroid issues aren't a bigger problem than they like to admit.
It's because of the history of hyper/hypothyroidism that people believe it's an illness of old times (because it was iodine related
Before mainly ) not realising the autoimmune element in western countries is the biggest cause
Saya you're so smart and well informed. You should be a GP or a consultant. Would far sooner come to someone like you for advice. Thank you for listening and everything. Can't believe how low I feel. x
I do work in healthcare (optometry) and have family members in medical profession but tbh since childhood I've always taken an interest in medicine healthcare and science.
Even so(!) there is so much I am learning now through more research to understand my own condition and challenging doctors etc trying to get them to listen despite being able to give concise history and symptoms and speaking in medical terms - I really despair for the average patient with no medical knowledge.
I think it has driven me to try and force a more holistic approach towards my own treatment and others- even my own patients! They often will tell me their medical history and I am shocked at the most obvious mistakes in their care!
Really very sad- but as I said to coracle it's not the doctors ability or professional knowledge that's to blame necessarily- it's the time pressure they are under - they can only treat the new symptoms- they haven't got time to look at your whole history and join the dots unfortunately.
I think patient empowerment to be aware and research your own condition is important.
America is ahead of us in terms of 'functional' medicine approach.
In the Uk because of the NHS system you are only ever referred to a 'specialty'- cardiology, neurology, endocrinology etc so your symptoms and illness is only really viewed through a narrow spectrum. You may get referrals between departments but apart from the GP there is no one to manage you as a 'whole'.
Unfortunately our bodies do not work in completely separate systems. Endocrine is related to everything, so is immune, a thyroid problem is never just a thyroid problem.
I'm not sure why we don't see it this way in our current healthcare system.
Sorry for the rambling again, I've had 6 months of hell with my own health and struggling to getting back to half normal!
P.s! For more info - a Facebook page going by 'hypothyroid mom' is an excellent resource for more info.
I've also found dr Bergman on YouTube and dr izabella wentz great for more info. You have to take some things with a pinch of salt but a lot of the info is brilliant
I honestly think most people adrenals are so messed up it's hardly surprising we have so many autoimmune problems nowadays!
Did you know that one of the signs of hypo are cysts on the ovaries? PCOS?? The problem is, as I expect you know only too well, is that GP's treat symptoms and never actually get to the cause.
Our son in law is a GP and I'm trying to educate him 😉 He and our eldest daughter are just starting their IVF journey, even though she is lean she definitely has pcos signs as well as our yd, many of the symptoms of pcos are identical to hypo symptoms; I'm pretty sure they're part and parcel of the same thing. I really should ask her what her TSH and T4 results were!
I was always told I had cysts on my ovaries but it was no big deal and they would go away. I always suspected I had/ have pcos but it was dismissed by my GP and even mums GP.
Well done for trying to educate your son in law. Both my GPs - male and female have been quite dismissive of things such as Endo, cysts and other causes of infertility. x
Lol absolutely @educate other healthcare professionals. Sometimes it's worth just trying to give another perspective- often it's so hard to get that as a healthcare professional because you get stuck in a rut and no one to really give you feedback.
Yes pcos and thyroid (and diabetes due to insulin resistance- which is acknowledged by doctors but not the thyroid link!) is all very strongly linked! They are all endocrine disorders so not surprising really! Also closely linked to adrenals due to the cortisol and sex hormone production and often an immune element too. The body works in a perfect balance of homeostasis so not surprising if something is dysfunctional it will set off a domino effect and affect feedback loops.
Be aware however PCO and PCOS are slightly different. You can have ovarian cysts without the syndrome I.e it is not hormonal related as such.
But worth keeping an eye out for tests and symptoms.
A diet of lower carbs and less gluten therefore makes a whole lot of sense when you see the above links.
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and I think you are completely in your rights to complain. Is this an NHS funded cycle?? (I am hoping you have not spent lots of money on drugs..)
It's just so lovely to have wonderful people like you and Coracle just giving me some info and talking with me. My clinic couldn't get off the phone fast enough and that just left me in tears and desperate with questions. I thought it was the end of everything, and then I thought maybe with something like that maybe it's best if I don't try and get pregnant or have a child etc. 
IVF frozen egg transfer. Fresh transfer cancelled due to high progesterone 
Advice Please on Next Steps 
Intralipid Infusions, NK cells 
egg collection - oestrogen level over 14000
