Calling all thyroid experts!!Found out I have under active thyroid just before BFP. Have previously had 3 MCs and a little girl who was prem and died at six days... Need some advice !

[greengoose]

Hi, to fill you in on my history; I have had two lovely boys, aged 5 and 10, then a two yr gap, then within the last two years: a MMC at 9 weeks, then another early MC, then my lovely girl who we knew had a tumour (sacracoccygeal Teratoma) and arrived prem (32wks), then died when she was 6 days old. One of the reasons she was prem was because I had severe pre-eclampsia. After my little girl I MCd again in oct, at 9 weeks, then I have just got another bfp this week.... I am 39.

Two weeks ago, after a blood test the doc told me I had a slightly underactive thyroid, and put me on 25 mg of levothyroxine, my levels were 5.9for TSH and 13.8 for T4. I have lots of symptoms. At this time my BP was also high (157 over 100), it has been high on and off since I had pre-eclampsia.

Having just got my BFP, I don't know whether to push for a consultant appt, or to up my meds. My docs are not the proactive type, and will probably need a push to do anything! They have referred me re recurrent MC, but we don't even have an appt yet, and if they wait to refer me via the ob-gyn route it may take weeks to get referred on, and I will have probably MC again by then!

The other things I take are high dose Folic acid, and I should take baby asprin from BFP, but haven't started yet as worried it might clash with the thyroid meds, so will start after I check with doc tomorrow, if they say it's ok. I also take a prenatal sup, and omega 3, (the pregnicare ones).

I guess what I'm looking for is some advice, are my levels high enough to suggest a higher dose? Should I push to see a Endocrinologist? If so should it be ASAP, or is it ok to wait? Could my high BP be linked at all to anything, and does high dose Folic acid (or baby asprin) impact on or have q link to the medication or this thyroid condition?

Well, if anyone has got this far, well done and thanks! I am, as you can imagine, going a bit mad at the thought that I need to DO something to stop myself MCing again.... Another baby will never replace our beautiful girl, but we would really love to add to our family....

Just to say, before others do, I would obviously take any advice given to GP before self medicating! That is not my plan, and I know I need to listen to the docs.... I am looking for advice and guidance, thats all.....

Hi greengoose, my situation is similar but not the same and I can't really offer guidance or advice but didn't want to leave you unanswered. I was diagnosed with an overactive thyroid and warned not to get pregnant whilst being treated for it - a week later I had a bfp. I was referred to an endocrinologist and saw him throughout my pregnancy, with scans every six weeks rather than the 12, 20 and 32 weeks usually offered. My son was healthy and my thyroid levels stable following his birth. Prior to this I had a mmc at 9 weeks, which in hindsight could have been attributed to the thyroid levels. So, all I can suggest is you request a referral and as difficult as it is, try to relax as there is nothing you can do to avoid nature taking it's course - but all fingers are crossed for you x

Thanks LIZZY... It's lovely that your little boy arrive safe and well, but it must have been scary at times. I am going to request a referral, hopefully it won't take too long, wrong time of year though!

Arrived, I meant.

In both my pregnancies I was told to start taking an extra 25mcg as soon as I informed the GP I was pregnancy (fortunately, where I stay most of my antenatal care is done by local hospital, so it was the hospital that wrote to me once advised I was pregnant and told me to increase my dose).

I'm also meant to take aspirin (as I had pre-eclampsia in last pregnancy) so I don't think there is any problem taking it with thyroxine. Thyroxine is a substance produced by your own body normally, its just when you're underactive you need extra, so as far as I'm aware it's not usually something that woudl clash with any medication.

Also, I think the baby needs a lot of thyroxine in the first trimester, this is normally provided by the mother naturally, but if you're underactive you won't be able to produce any extra unless you up your thyroxine dosage.

I think it's reasonable for you to contact your GP and have a discussion with them about your current dose of thyroxine and whether you shoudl increase it now. The following guidelines are from 2006 but as far as I know they're still current, and certainly my consultant at the hospital follows them, you might want to read them and mention them to your GP to get their views? www.acb.org.uk/docs/TFTguidelinefinal.pdf

I'd urge you to be really proactive on this - I didn't get a consultant appointment until 26 weeks as the NHS machine put me on a standard waiting list, rather than treat me immediately. Prior to 12 weeks the baby is reliant on you for thyroxine, but after that will make is own. If your levels are out post 12 weeks it won't harm the baby, but you may feel awful.

I think it is fairly normal to raise dose by 50% on BFP, so if I were you I'd take an extra half tablet a day (speak to your GP first). 25mcg is a low dose so you aren't a high risk case. My consultant has written in my notes that TSH should be between 1-2mU/L. He also said it 6 week lag was required between changing thyroxine dose and blood tests as it takes the body this long to adjust.

Don't take thyroxine with any other medication just in case it affects absorption. My prescription script advises 4 hours between it and other medication. Also take it first thing, preferably a while before breakfast.

ELETH, thanks for the info and link, I've had a good read, and think I will print and take with me tomorrow! It's reassuring to know that baby asprin in fine also. Thankyou!

W.Sauce... It's terrible they made you wait that long. I hope everything worked out fine for you and your baby.
The dose they have put me on was just a starting dose that I fully expected would go up after six weeks even without a bfp, I'm not sure how they are going to work out what to raise it by, but I'm almost certain it's not high enough. Thanks for your advice, it's much appreciated!

Bumping for the evening lot.... Anyone.....?

Hi goose, just wanted to let you know that there is an earlier thread on this board called 'pg with underactive thyroid' which has lots of really good advice from someone who I think is an endocrinologist (or otherwise medical specialist and who also has an underactive thyroid) - if you read the thread you might find it useful? (you might have to scroll back 4 pages or so?)

Hi, is the tsh of 5.9 pre or post thyroxine? have you had your levels checked post bfp? at 5.9 your dose does need to go up but it might not be 5.9 if you have started taking the thyroxine since then iyswim? the first thing i would do is get a referral to an early access consultant (prob from your GP or mw) and while you are waiting for that get your bloods done, your dose should go up by about 25 to 50 mcg to keep tsh at the lower end of normal. re the aspirin i take my thyroxine in the morning and asprin at night so there is a good gap in between meds, avoid taking any other meds at the same time as thyroxine, it can affect how it is absorbed. I am afraid you may need to shout and stamp your feet a bit, lots of others with underactive thyroids in pregnancy will tell you the same, GP's just do not have the knowledge. I am sure you could find some NICE guidelines to show them or the british thyroid foundation has info on thyroid management and pregnancy. fwiw pre diagnosis and treatment i lost my baby boy at 24 weeks (severe pre eclampsia) an had a mmc at 9 weeks, post treatment i had a healthy baby boy at term and am now 12 weeks pregnant again. good luck op

Hi there. Congrats on BFP and sorry to hear of all your probs to date. Just to say I would defo push for consultant appt as GPs really don't know about thyroid stuff. I was told by consultant that TSH needed to be

Eleth.... I found BARTLET, and have pmd, so I'll see if she is around to give advice, Thankyou!

rhubarb... The 5.9 is pre drugs, the test was done on 15th oct while I was preg before MC last time. Re stamping feet, I'm getting much better at it!
I'm sorry about your mc and that you lost your little boy, it is the worst thing, the worst pain. It's lovely to hear that you now have a second son and are preg again, all the best!

Dontsay.... I agree, but not sure how thick on the ground consultants are over the holidays! I think with the time meds take to kick in, if the doc doesn't up them by Monday they won't have time to make a difference before I potentially MC again anyway? Although I'm glad I have BFp I am thinking it might have been better to wait until TSH had come down and meds established..... Not much I can do about that now though eh?!

Our main hospital have an antenatal clinic for endocrinology. Though the local midwives referred me rather than GP at my first appointment, I was seen at 9 weeks. Then saw them every month of my pregnancy and my medication adjusted as appropriate. My GP really had little relevant advice, so was glad I was referred by the MW's.

I had just been diagnosed with a slightly overactive thyroid and a week later had BFP. DD was small for dates, but wasn't sure if that was genetic [me and DH were small for dates too] or the medication. DD arrived 5lb 13oz healthy and well, she's now a bouncy 2 year old. My thyroid settled down and has been fine. But I'm back under consultant care as I am expecting another one, just in case it's pregnancy related [so far so good] 23 weeks tomorrow, but I have more growth scans and blood tests to make sure all is well.

I hope you do get sorted out soon, your GP sounds most unhelpful.

greengoose you definitely need levels doing then. I would try and get them done within the next 2 weeks (sometimes they will only check levels at 4 week intervals min) and then go from there so that when you get your recurrent mc clinic appointment you have the results to show them. you could also try ringing the recurrent mc clinic and chase up your referral, explain your history to them, i am sure they would help you especially if you explain that you are worried you might mc again. having said that a tsh of 5.9 pre meds is not major and you would assume it will only go down on meds but 25mcg is a low dose so i would be surprised if your dose doesnt need to go up at some point. in short, chase them up, hurry them along but dont panic.

I am so sorry about your dd, you are right, there is no pain like it. your thyroid problem is now diagnosed and being treated so try not to worry too much (do as i say not as i do!) best of luck

Keller.... I'm glad you have been looked after, I hope the rest of your preg goes smoothly!

Rhubarb... Thanks for that, I will chase the appt tomorrow. I'll try not to panic, but, as you know Im sure, easier said than done!

Just an update,
I went to docs on 24th and, after I waved some of the advice I had been given (but not before)! she agreed to up my meds and booked me for a consultant appt. she also did my bloods again, including antibodies, and again, this wouldn't have happened if I hadn't consulted on here! So thanks everyone, I'm very grateful!

That's great news greengoose, I'm sure you're feeling much better about it all now, it's just such a worry when you feel that something medical might be getting missed, and such a relief when you know it's being treated appropriately.

Here;s hoping you get a nice uneventful pregnancy :-)

well done for standing your ground greengoose the feet stamping isnt easy but you get used to being demanding :) good luck for the rest of your pregnancy

Hi greengoose, sorry to hear about your pregnancy losses.

Re the thyroid a TSH of 5.9 should not be classes as slightly under active. Your GP is going by the old and now much disputed levels that anything over 5.0 is under. More progressive research (that many GPs are not aware of) indicates that in fact the normal range should be closer to 2.5 - 3.0. I know myself, having lived with an under active thyroid since the age of 21 - now am 38) that I feel rubbish when my TSH is anything over 3. I am not saying these two things are connected for everyone but I had 4 miscarriages before having my five month old DS and managed this pregnancy with the help of a miscarriage specialist (google the Miscarriage Clinic - Mr H Shehata) who diagnosed high Natural Killer Cells - a theory disputed by some specialists but proven by others to often be connected to thyroid issues. My treatment was with steroids, and other meds including over the counter ones - 75mg aspirin, Pregnacare plus Omega 3 and Vitamin D (additional dosage to the Pregnacare). I also took Selenium myself having read a lot of about it helping support a healthy pregnancy.

Please print this out and take it with you to your docs when discussing thyroxine dosage and 'normal' TSH levels.

thyroid.about.com/cs/testsforthyroid/a/labs2003.htm

Mary Shomon (link to her about.com page above) has a lot more research on this.

Ideally in pregnancy a lot of research indicates you should have a TSH of under 2.0 and should therefore be on a higher dosage of thyroxine. I am not a doctor so please do your own research on this! But make sure both you and your doc is aware of the research regarding TSH normal levels. Feel free to ask if you have any more questions.

How are you doing Greengoose? Hope the thyroxin is doing it's job and your pg is going well. Don't know if you remember me from the June 2012 thread, but I have followed your story and wanted to just say hi. I am a fellow underactive thyroid sufferer and if you ever need any advice (not medical professional but just anything) please PM me :) Hope all is well, Blondie Xx

Just to update....
The bloods I had done on the 24th came back at TSH 3.2 (at time bloods taken I was on 25). doc put up dose to 50.
I had Endo appt on 3rd jan, (which is when I got those blood results of 3.2) and he upped dose again to 75. The tests also came back as possitive for thyroid antibodies.
I will have bloods done again on Wed, then every four weeks. I also see End again in three weeks. I have apps with my Ob cons. On Fri.
I have a scan tomorrow, which will tell me if this baby is there or whether I've had another MMC. It's at 10.20, I'm counting the seconds....

Thanks for your advice and thoughts, Freelancegirl, the NKcs is something I have thought about, but to be honest if this one doesn't stick, I don't think I've got the heart to keep trying anyway.

Blonde... It's lovely of you to say hi! Hope all is well with you, I'll post on here when I find out how things are after the scan tomorrow. X

Greengoose you've been through so much! So so so sorry to hear about your 4 losses

I lost my baby boy at 23 weeks in April (born sleeping) he was perfect. Then had 2 D&CS may and june. Fell pregnant July and found out I had over active thyroid Miscarried 7 weeks naturally. Miscarried again December 7 weeks had d&c and now have underactive.

It may be due to your pregnancy losses? Doctors want you to get seen asap with thyroids.. so its worth making an appointment :)

Sending you so many sticky vibes, you deserve a healthy fullterm baby! Fingers are tightley crossed for you

Sophie... My god, that's horrendous, you must be such a strong lady. Have you been tested for antibodies? Just a thought, as it seems more linked to MC, but I'm obviously no expert!

You might like to know that there is an amazing group on here for ladies trying to get pregnant, or having had another child after loosing their baby through stillbirth or later. Its the 'rainbow babies' thread, but if you press on my name it will show as I thread I'm on if you need the link. These ladies have held my head above water many times when I thought I might go under last year, they are amazing. No pressure, but it might be right for you? Anyway, I really hope things work out for you too. I also lost my baby in April. It doesn't seem like nine months has passed. X

What are Antibodies? I haven recieved testing for my miscarriages or thyroid. Got a thyroid appointment on monday and recurrent miscarriage tests early March.

Are you coping well?? I can't imagine how nervous you feel, you've been through so much. What topic is rainbow babies under?

Your right doesn't seem like its been over 9 months since I held and met him.:(.
What was your little girl called if you don't mind me asking. x

Hi Sophie, the Rainbow Babies thread is under 'conception'...
Re the Antibodies, there are people on this and other threads who advised me to ask to be tested for this, it's a test to determine whether your thyroid is playing up because it's being attacked by antibodies, so as part of an auto-immune disorder. They still just treat with thyroid meds, but it is linked to miscarraige and preterm babies. It ca, I think, also cause your thyroid THS results to swing a bit, but I'm no expert!

No, I'm not coping that well, but, I'm sure you know, you do cope don't you... There is very little choice! I will be glad when tomorrow is over and I know whether this one is growing or not, I hate this stage when so much can go wrong. I know it can later too, obviously, but at least there would be a reason to hope for a while.....

My little girls name is Merryn, of course I don't mind you asking! She was born on the 12th april and lived for 6 days in NICU after an op to remove a tumour failed. We didnt get to hold her until the end, but she was lovely. We miss her very badly. What was your little boys name? it would be lovely to see you over on the 'rainbow' thread.... X