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Hiya, thanks for everyone's responses. Is nice to be in a place where people understand! In the end the doc has agreed to 125 one day and 100 the next of thyroxine. She says that clearly 125 is over medicated and 100 is under. We will see what happens. The clinic have quite rightly said that the cycle needs to be delayed for at least another month. Hoping that we can get started in June!

Happy C, I didn't take meds at bedtime but in the middle of the night or very early morning when I went through IVF with pred. Usually when I got up for a wee! It worked for me but some may have a stronger bladder than me so might not need to get up in the night!
 

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Hi ladies,

Noticed this thread has been a bit quiet of late but I’ve been following for a while. Just wondered if anyone can recommend some home thyroid testing kits? Currently about to embark on 2nd FET, last was cancelled due to TSH 3.6.

I’ve cut out gluten and uped thyroxine to 100mgs and this brought it down to 1.7 so green light for go again. Prob is, the Nhs will only test my blood every 8weeks so will have had my transfer before next test is due. First failed fresh cycle revealed TSH was 4.6 after transfer which is the reason I think they failed.

I also think the oestrogen affected my levels last time. Saw someone’s advice to switch thyroxine to evening and take others oestrogen in morning which I will try. I’ve also heard I ,might be able to ask for steroids to suppress immune system. Has anyone had experience of this? Thanks I’m advance for any help and I hope you are all doing well!
 

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Hi all,

I hope everyone is doing well, wherever you are on this journey. I haven't been on the forum for ages.

Hi Welshone83 - sorry your thyroid isn't playing ball and that NHS isn't more helpful. I can recommend Medichecks and Blue Horizon home test kits. They're both accurate - pros and cons for both. Medichecks keeps all your results on your own portal so it's easy to look up, Blue Horizon just email you a pdf. I have found Blue Horizon much quicker (I often have my results the day after posting my sample from the Highlands) whilst Medichecks usually takes a few more days. Both have regular money off offers, Medichecks does #Thyroid Thursday offers every week too. People on thyroid forums seem happy with Thriva tests too but I haven't used them yet. Sounds like the GF is helping you though. I have been really strict since January and had no cheat days. My thyroid antibodies are now back within range and around mid-April I realised that I had lost a stone without even trying.


Yes, oestrogen and phytoestrogens bad news for the thyroid. They block uptake of thyroxine so keeping meds apart really important and I think a dose increase is also often recommended and/or constant monitoring. I just read a paper on the effect of normal monthly fluctuations in oestrogen on thyroid function in thyroid healthy women and the oestrogen surge mid cycle is enough to cause a very temporary surge in TSH (apparently this can cause mis-diagnosis). It is all one big learning curve! I never even used to consider monthly timings for my thyroid tests, just time of day (TSH peaks between 2am and 4am in the morning - so, so handy for GP surgeries). Sorry, I can't help on the steroids issue, but I will be taking them empirically for my next cycle. I'm sure someone will come along soon with experience of that.


AFM - I seem to remember posting several months back that the only reliable thing about this was the unreliability of the thyroid. Et voila, ready to cycle after a horrible few months for our family and my TSH is now over 7!!! GP won't up dose because when he tests, in surgery hours, it's just over 4 (I always test between 6am and 7am). So private consult booked as I'm not in the mood for any more NHS battles.  :-\

Laquinn - hope you are doing okay?


P x



 

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Great thanks so much Pizzicato, so sorry to hearabout your family situation and thyroid. That’s terrible news but good news re cycle and private  consult. I’ll defo look out for thyroid Thurs. great advice about spacing meds and blood tests.. thanks!

Had planning today and have drugs ready to go. I asked about steroids as well and nurse said she would ask the dr but that they wouldnt usually prescribe them unless a few failed cycles. Seems bizarre but then I suppose its down to costs. Glad I asked anyway, I’ll find out in first scan date if they will prescribe it. Just waiting for AF now.

Hope the rest of you are all well? Anyone else cycling soon? Xx
 

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Welshone - So sorry to hear about your cancelled FET. I've found Medichecks to be good and reasonable with their #ThyroidThursday offers. Have you had immunes testing done?

Pizzicato - So sorry to hear about the difficult time for your family and your TSH level; but good to hear you can go for it when you're ready! NHS is getting super-strict isn't it?!

I am okay - to our surprise we got a natural bfp last month but I sadly miscarried at 5wks 3 days. We were booked in to start de IVF so have decided to postpone it for a couple of months and see what happens... Since we last chatted I have been diagnosed with Fibromyalgia - I remember you talking about the link between Fibro and thyroid. My thyroid has been fine - getting my latest blood results back this week. Xx
 

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Aw Laquinn, so sorry to heAr that, I hope you can take a small piece of comforting in being able to convince (I’ve never got that far) and sorry to hear too of new diagnosis. We’re you showing symptoms? What’s the treatment. Good that you take a little break to reset.

Medichecks turned up and looked great but couldn’t get any blood! Are sending me another and will take baby aspirin and even more water to try and get blood! otherwise they have to send me an iv kit and I will have to ask my friend who is a gp going to take the blood! Never simple is it, have be scan tomorrow and will find out about steroids too.

To answer your question.. no immune testing yet but if this doesn’t work I’ll look into getting the panel from Greece... is it locus medicos?

Hope everyone else doing well xx


 

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Thanks Welshone. I am taking some comfort from being able to concieve; we concieved our angel straight after a miscarraige so I am hoping that I'm superfertile at the moment and will pop a golden egg! So sorry to hear that you've not concieved so far; I guess the outcome is unfortunately still the same for both of us. Hopefully we'll get our babies soon  ^pray^ I've had Fibro symptoms forever; aches, pains, poor ciruclation, depression, PMDD.... I suspect it may have had something to do with our late loss as it can 'cause excess amniotic fluid and I was huge in pregnancy.

Medichecks have an option for someone to come and draw blood or you can go to a local affiliated clinic - I never managed to get it out of myself either!

Yes - it was Locus Medicus I was thinking of. I'm being treated by the Miscarraige Clinic in Epsom.

Hello to eoe  :)
 

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Hi everyone,

Laquinn - I am so, so sorry to read your news. Sending you  ^hugme^ This journey is just b***** unfair sometimes. Good that you can postpone your treatment and keep trying naturally for a while - like you say, wonderful things often follow awful things, and my fingers are crossed for you. Sorry to read that you have had the fibromyalgia diagnosis too. Have you had much support post-diagnosis? I've recently started hydrotherapy at a specialist pool. It has been a god-send as I can exercise and stretch in the heated water with no pain. Other than that I get by with Epsom salt baths and heat pads (there is a heat theme  :)) I have been through every NHS path of treatment and none worked for me. Maybe just as well, given that the drugs can't be used when TTC. Hope you are getting good support and can find things that work for you.

Welshone - sorry the medichecks blood draw was difficult. If it's any consolation, I did one a few weeks ago and could have filled 3 containers, then the following week struggled to fill 1 (had to stab myself 7 times!). I take high dose fish oil which helps, but I find washing dishes for 10 minutes before the test always gets the blood flowing. Good luck on the immunes front. I have decided to try steroids etc. empirically this time and, if it doesn't work, will go for the Coventry biopsy before the next attempt.

I feel very relieved after my endo appointment - my thyroid is now in knowledgeable hands, so it's one less thing to worry about. I'm now being tested for pernicious anaemia as my vitamin B levels are bottom of the range and I take a fairly strong methyl B complex.  ^pray^ I don't have another auto-immune condition!

Hello to anyone else on this thread.


xxx
 

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Pizzicato - Thanks  ^hugme^ Not had any post-diagnosis support for Fibro but relieved that all the symptoms I've been having make sense. I've got a medichecks magnesium blood test ordered 'cause I read that magnesium deficency is linked with Fibro. At the moment it's shoulder and foot pain that is bothering me so I'll check out the hydrotherapy.

That's great your endo appointment went well. That is interesting about your vitamin B levels - hopefully you'll get a diagnosis that can bring some resolution... Maybe a supplement or injection might sort everything out for you. My TSH is currently 0.78 and T4 14.5 - does that T4 sound okay to you for TTC? I still have low blood pressure and a slow heart rate so still wonder if I have secondary hypothyroidism...

Hello to eoe  :)
 

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Laquinn - I have found magnesium really helpful, especially at night for good sleep. Better You have a lovely magnesium range. My shoulders/neck/arms are my worst affected area, but, for some reason, hips and feet are getting in on the act just now too. Do you have the scale for your FT4 result? If it's the same as mine 12-22, then 14.5 is on the low side. I have no idea what bloods should look like from a hyper perspective, though. Have you had your FT3 measured? I'd want to investigate a little more, I think. My FT4 has never been much below 16, if that's any guide.


x
 

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Pizzicato - I'll check that brand of Magnesium but I'm a bit scared of taking more supplements after our late loss... I'm drinking lots of red raspberry leaf tea at the moment which apparently is good for magnesium but hope that won't skew the blood test... Never got a scale for the T4 but the endo said it was fine and Professor Conway said I was fine so I guess I'll just have to accept it. I'll try eating brazils every day and maybe try iodinized salt or dulce. I think I went hyper because I had post-partum thyroiditus with our angel; the endo I saw at the time said eventually I will probably end up hypo - never explained why but I guess it's because I have the antibodies which are probably attacking my thyroid. I'll get FT3 tested. From what I've read online low T4 and low TSH = a pituitary gland problem and interestingly the IVF clinic I was booked in with want to test that. My prolactin levels were raised last time I had them tested.

Sorry to go on about me so much! How are you doing? When are you getting your next thyroid test? x
 

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Hi Laquinn - totally understand your cautious approach to supplements after everything you've been through. Testing magnesium levels is sensible and then you have the confidence in what and how to supplement. Just by coincidence, I've seen a lot of posts recently on a thyroid forum about pituitary related hypothyroidism. Given the reliance on TSH, it must be a nightmare trying to get a proper diagnosis. Your IVF clinic sounds very on the ball though, and, if Prof C and your endo aren't too concerned, that is also comforting. There is quite a lot of evidence showing low FT3 can worsen fibro pains so let me know how you get on with testing.

Do you mind me asking which IVF clinic you chose? I am booked to go to Serum in a couple of months, but think their prices are going up quite a bit. Waiting for confirmation but they might now be out of our price range as I've had to stand down from my job because of my health these past few months. I'm definitely feeling like I may be back to square one  :( I don't have another blood test for a month - GP has been asked to do it, but I think I'll be taking advantage of Thyroid Thursdays so I can get the TSH, FT4 and FT3 checked. I cannot believe that my 46th birthday is looming and I'm still in limbo.


On the upside, it is still warm and sunny. I read somewhere that cold water was good for shocking pain out of the system so a beach swim (in wetsuit - I'm not hardcore) awaits. Hope you have a lovely weekend. x
 

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Hi Pizzicato - I am going to have a word with my doctor about the low T4; I had to get intralipids at the Miscarraige Clinic in Epsom when I got my bfp last month and they were concerned at how low my blood pressure was. There was one GP I saw who was concerned about the low T4 and ordered my thyroid to be tested every 6 weeks but my endo has the last word on everything and he is very dismissive of anything outside the NHS T4 and TSH guidelines. But it says this on the NICE guidelines: https://cks.nice.org.uk/hypothyroidism#!scenario:2 The clinic in Epsom said I had to talk to my GP about my blood pressure so I am going to go in armed with this - thank you so much for inspiring me!!!! Sometimes you feel so battered down by some of the attitudes in the NHS you just lie down to it. I think at the heart of it is a belief amoungst some that we shouldn't be trying to have babies at this age...

We are going to Zlin in the Czech Republic - they have been amazing and given me a lot of confidence. They will expect you to have an endo in place to manage your thyroid but offer a lot of testing including immunes. They are sympathetic to immunes treatment although they do not specialise in it themselves but will work with a reproductive immunologist or any other specialist you need to involve in your treatment. Sorry to hear about your work - it's really dispirating being stuck in limbo land I know ^hugme^ But hopefully all of this will be a distant memory when we get our babies! 46 is young compared to some mummies on here! Zlin treat up to your 50th birthday.

A beach swim sounds amazing - where did you get your wetsuit? I've just been paddling whilst we've been away in Scotland over the summer. It's been a great summer so far... x
 

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Hi Pizzicato and Laquinn 🤗 Just wishing you both well with your next cycles/treatment. My GP isn’t keen on me having very frequent TSH bloodctests either, I think it must cost money. I’m only on 25mcg levothyroxine alt days at the moment which seems ok, but I have to increase it when cycling. I agree there seem to be some attitudes about TTC over 40 which is annoying. This forum helps with that  :) I’ve been trying to be gluten free for most of this year and I’m sure my latest anti thyroid antibodies have come down a bit (they were tested in June at Epsom hospital and were 376). I’m going to carry on being gluten free. I wish I could cut out sugar & dairy but just can’t quite manage that! I’m also going to Serum again sometime for a transfer this Autumn, as I did at least have a bfp there in one of my 2 cycles there and Penny is nice and reassuring. I had 2 disastrous cycles in Russia which were a complete waste of time  :mad: but never mind, onwards & upwards!  ^pray^

Sorry I’ve not read back to everyone else’s updates, I hope everyone is doing well xx
 

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Hi Strawberry  ^hugme^ Thanks! Does your clinic advise you on how much to increase your dose when cycling? Good to hear your antibodies have came down. Sugar and dairy is hard!  ::) I have a bit of honey and full fat yoghurt but when I was away on holiday it did cakes and a few glasses of red wine! I'm going for relaxation...  ;D That's great you're cycling in Autumn. Penny is lovely and reassuring. I was considering Russia too - tempted by being able to see photos of the donors but read a lot of mixed reviews. Everything crossed for your next cycle  ^reiki^ xx
 

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Thanks Laquinn!  ^hugme^ I went to see Prof Conway last Dec & he told me to increase by 25mcg when cycling/pregnant, so just going on that advice! Definitely holidays are to enjoy! I love cakes  ;D Yes the photos were my main reason for going to Russia. Another lady I met was successful there, but for me it was rubbish! And very hard work having to get a visa each time etc!  ^bigbad^ It’s put me right off Russia as a destination  ;D Better to go to nice places like Greece! All the best xx
 

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Hi all,
There seems to be a lot of info and ladies on here with Hypo/Hashimoto’s.

Does anyone know anything about Hyper/Graves disease? My SIL recently got a TSH result of 0.01 and T4 of 25. She was about to start an IVF cycle and this came as a huge shock. She is going to see an endocrinologist ASAP.

But in the meantime does anyone have any ideas on how this can be treated, how long it may take and the impact on IVF?

Thanks in advance!
 

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Hi vkv,
I went hyper 6 months after I gave birth to my daughter who was very sadly born sleeping. I have Graves in my family so it's probably that but they wouldn't do radioactive iodine test to confirm whilst I was trying to concieve. I took PTU which got me back within a healthy range. Endo wanted to keep me on the slightly hyper side to concieve - TSH between 0.4 - 0.8 and T4 between 9-25. I was on PTU for around four months - it worked pretty quickly. I was successful on my first cycle of IVF but I was treated for immune issues by Mr S in Epsom - if your SIL has Graves she might have other immune issues and I would recommend she gets tested as Mr S strongly suspected immune issues were responsible for our loss - I had strong ANA in the tests which is associated with stillbirth, If you have one immune condition like Graves you more than likely have others. Hope this helps.
 

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Hi ladies

I am hoping some of you may be able to help with some advice.

I have recently had a missed miscarriage, discovered at almost 10 weeks but heartbeat apparently stopped at around 8 weeks. This was my 3rd miscarriage and my second with donor eggs.

We have some frozen embryos left that are meant to be good quality and which I would like to use. But before that I want to rule out any issues with my body. I have felt for some time that there is something maybe wrong with my thyroid - underactive - as I suffer from almost all the common symptoms, but especially weight gain and an inability to lose weight no matter what I do.

I also seem to have immune problems which have developed in recent years like atopic dermatitis which seems to flare up hormonally and due to stress.

I was reading about the impact the thyroid can have on pregnancy and also about hashimoto's disease. Now for context my mother has hashimoto's, and many on her side of our family have thyroid problems, mainly underactive. So thyroid issues are common in my family  and I am wondering if I might have hashimoto's.

In the past when I have had thyroid testing done at the GP they only do basic tests and say everything is fine. My clinic did test me some months ahead of my donor egg treatment and my TSH was 1.58 so all ok prior to treatment. However I never had it tested again once treatment started or after I got pregnant as nobody said I needed to. But I am wondering if things change when I get pregnant and if my thyroid is impairing my ability to stay pregnant.

One thing I noticed too is by week 6 of pregnancy my skin started to flare and I had this previously too when pregnant before. So I feel like I was having an autoimmune response.

Anyway, to rule things out or get treatment if necessary, I want to get some testing done and try to see an endocrinologist privately if I can. Only because I think I won't get any joy from my GP or the NHS and it is impossible to even get an appointment with my GP surgery unless booking at least a month in advance!!!

So I am wanting some advice on testing. If I want to bring test results to a consultant and make sure I have covered off everything necessary to make a diagnosis, are these all you think I need tested, or is anything missing:

Test inclusions are TSH, T4, free T3, free T4, Thyroid peroxidase antibodies, Thyroglobulin antibodies, Vitamin D, Vitamin B12, Ferritin, Folate and C reactive Protein.

This is the full thyroid testing profile being offered by a London lab I can access without needing a referral.

Any help or advice would be really welcome. Thanks very much.

X
 

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Hi poppy have read of your troubles on the Spain thread and I’m so sorry your going through this. I only have the basic thyroid testing done so I can’t help with that, but I would strongly suggest that you go down the route of immune testing, because you have now had 3 miscarriages can you be referred to the reoccurrent miscarriage clinic? I would really push for this as something is interrupting your embryos once you see a bfp, yes it could be thyroid related but considering your having flare-ups if immune type, I would point the finger that way as well, hopefully you can come up with some solutions, if not look up locus medicus in Athens and they will do a full immune panel and send you results with a consultation regarding your results.
 
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