Just found out about hypothyroidism whilst TTC

(54 Posts)

I got my bfp last and found out we'd had a mmc at the dating scan. Since then I've had a couple of blood tests which have showed ever elevating TSH levels to the point they are sure I've developed hypothyroidism. T4 levels are still just within range.

While of course it is very treatable, I've been feeling pretty gutted because I understand it's an obstacle to conceiving until the meds kick in.

Anyone else find out about/develop hypothyroidism whilst TTC? I would love to hear any stories and also wonder if anyone understand how long it might take for me to be back in with a chance of conceiving. Yes, I'm very impatient!

Lucky13ForBaby Sun 17-Mar-13 17:55:14

Bump for you

SofaKing Sun 17-Mar-13 17:58:29

I spent 3.6 years ttc and succeeded after being on thyroxine for 1 year. I had other diet and lifestyle issues which didn't help my fertility though, and when I addressed these I got pg straight away, so hopefully once the meds kick in you will get pg very quickly :-)

Thank you lucky smile

Thank you too for replying, sofa. Did you find it easy to manage during your pregnancy? They said they'd want me back at the doc's as soon as I get a bfp, so I guess that probably means they keep a close eye on your levels throughout?

sunnyday123 Sun 17-Mar-13 18:59:53

I was diagnose hypothyroid after a mc too when I was 25. I started meds straight away and it took 12 months to get pregnant again (the first pregnancy took 5 months). Once sorted it only took me 6 and 3 months with following pregnancies.

You should get a check up in each trimester. My dr said untreated hypothyroid increases mc loads so get treated ASAP, ideally before getting pregnant.

Once treated it shouldn't affect your pregnancy at all!

Shesparkles Sun 17-Mar-13 19:05:25

I developed hypothyroidism between having dd and conceiving ds, but conceived ds in the 1st month of trying.
With the caveat that things might have improved, all that happened was that I had mt thyroxine dose increased (I think I went from 150mcg to 200mcg) straight away, with a blood test every couple of months. I had a happy healthy pregnancy with no effects from the thyroid.
Once you get the dose of thyroxine sorted out and stabilised, you'll feel a lot better physically and mentally-it does drag you down to start with.

AThingInYourLife Sun 17-Mar-13 19:13:07

After half my thyroid was removed I struggled to conceive for 10 months.

I had early spotting every month.

I conceived a couple of weeks after they finally agreed to give my thyroxine.

I also felt better and less tired within a week.

AThingInYourLife Sun 17-Mar-13 19:15:00

My consultant said that "babies love thyroxine", he was not remotely worried about managing a pregnancy.

In fact it was the best pregnancy of my three.

This is so helpful to read, thank you everyone. I must say that imagining another year of waiting to ttc is a bit of a scary thought, but of course much better than things not being right or another mc.

AThingInYourLife Sun 17-Mar-13 19:26:13

You are more likely to conceive when you levels are right.

And less likely to miscarry.

If they are saying you are hypo, push them to expedite treatment.

If you are TTC they target TSH below 2.

They've started me on 50mg, been on them a week now. My TSH was 15.5- not good eh? I've got to go back in a couple of months for another blood test. I'm not good at this waiting!

Welovegrapes Sun 17-Mar-13 19:34:43

I am really sorry to hear about your mmc.

I went on thyroxine in the September and conceived in the Feb. Sadly I mc that baby (also a mmc) which my Gynae felt could have been because my thyroid wasn't under control. I then got pg with my lovely little DS in the Sept, so the whole thing took a year for me too. I was 35 when I got pg with DS.

My advice would be not to TTC until tsh is under 2 and t4 is in the normal range. I think the mc risk is increased if you aren't within those ranges.

In pg you need to be seen every 4-6 weeks to check your levels. Tsh must stay under 2 and checks are particularly vital in the first trimester when baby has no thyroid of its own.

Welovegrapes Sun 17-Mar-13 19:36:14

In case it helps my tsh was 24 on diagnosis and it was at the right levels after a year.

Are you being seen by an endo? They can increase the dosage faster and bring down your levels quicker.

mercibucket Sun 17-Mar-13 19:38:16

You can get levels re tested every say 4 weeks, no need to wait ages, also increase the meds straight after the blood test if you still feel rubbish, as no doubt they would be increasing them anyway. Well, that's what I'd did. Always been the impatient type

You also need to get your ferritin, folates, vit d aand b12 tested. You can get private tests easily if necessary. I can pretty much guarantee at least one of them will need treatment. Treating those deficiencies will also help you feel better and get you on the right footing for pregnancy

In all cases, it is important to take an active interest in levels, eg ferritin could be 1 point above the minimum and you are told it is fine, no it isn't fine at all! Tsh needs to be well below 2, not 'normal' at 4.5.

mercibucket Sun 17-Mar-13 19:38:16

You can get levels re tested every say 4 weeks, no need to wait ages, also increase the meds straight after the blood test if you still feel rubbish, as no doubt they would be increasing them anyway. Well, that's what I'd did. Always been the impatient type

You also need to get your ferritin, folates, vit d aand b12 tested. You can get private tests easily if necessary. I can pretty much guarantee at least one of them will need treatment. Treating those deficiencies will also help you feel better and get you on the right footing for pregnancy

In all cases, it is important to take an active interest in levels, eg ferritin could be 1 point above the minimum and you are told it is fine, no it isn't fine at all! Tsh needs to be well below 2, not 'normal' at 4.5.

Iwish Sun 17-Mar-13 19:57:22

I have hypothyroidism but was diagnosed before ttc so not sure if that helps you. But I got pg 6 months after we started trying and had a healthy baby boy who is now 18mo. I had to increase my dose while pregnant and had bloods done every 4 weeks.

This is rather confusing- the doctor who is treating me knows well we're ttc and didn't mention a single thing about waiting- or about the fact that it's unlikely to be successful until my levels are lower.

One saving grace is I feel fine. I'm guessing this is because my T4 levels never dropped lower than the range that the symptoms never really showed- dont know if it works like that?

I haven't seen an endo. I want to now though! How do I get me one of those?

Thank you again ladies thanks

Welovegrapes Sun 17-Mar-13 21:10:03

Thunder, there is a lot of ignorance about levels and TTC, even among drs. I was told by a dr to carry on TTC, even though my tsh was 24!! I really wish I hadn't followed the advice as then I maybe wouldn't have had my mc. If I had my time again I wouldn't start trying until my tsh was under 2.

GP should be able to refer you to endocrinologist if you ask. You can also go privately if you need to - in London it's about £200 and will be much less outside London.

minipie Sun 17-Mar-13 21:15:34

I was diagnosed in January (tsh was 10.5, though t4 was just about ok)

put on 50mcg thyroxine at the start of February. I think I had a chemical pregnancy in late Feb but not sure.

got pregnant in late March and DD is now upstairs sleeping...

so it can happen quickly!

if you do take thyroxine and get pregnant, make sure you get regular blood tests especially at the start of pregnancy, as your thyroid function can change again and your meds may need adjusting to protect the pregnancy.

BoodleLovesPot Sun 17-Mar-13 21:26:17

Hello Thunder! <Waves furiously.>

I'm just dropping in here as I will be really interested to hear about the experiences of others with hypothyroidism. I say 'others' but really, I'm not hypothyroid - my TSH levels (in Sep/Dec 2012 respectively) were 4.6 followed by 3.9. I've had tests done recently but haven't got the results yet (except to be told 'normal' on the phone).

However, I have read that TSH levels should be below 2 when TTC. I've also been suffering with associated symptoms, though current doctor has written them off as stress and sent me away! confused

I guess what I would like to do is just lurk around and read the stories of others whilst not being able to bring anything useful to the table myself...!

Welovegrapes Sun 17-Mar-13 21:38:12

Boodle, I think you should probably ask dr whether you should be on thyroxine to bring tsh down to 2.

BoodleLovesPot Sun 17-Mar-13 21:57:06

Welovegrapes, sadly, I did ask (well, I asked whether my levels should be at 2 for TTC, I didn't explicitly ask for meds). I then got a big lecture about it being pointless as I was 'normal' and that everything I was complaining about were stress symptoms. sad I'm due to see a fertility specialist in the not too distant future so I am going to see what they say and may return to doctor after that.

mercibucket Sun 17-Mar-13 22:30:26

its pretty standard advice when ttc to have tsh under 2, so you may need to educate your gp

BoodleLovesPot Sun 17-Mar-13 22:48:20

I have seen 3 different GPs in the hope that one would actually listen to what I was saying about the TSH<2. Even printed out the NHS Clinical Knowledge Summary with the recommendation on when I saw the last doctor. Infuriating! I really appreciate your comments, Merci and Grapes as it reminds me that I'm not turning into a hypochondriac; they ARE wrong and I AM going to find someone who will listen to me properly!

*Thunder, you started this thread looking for help for you! Sorry I've ambushed it!

Hi boodle, <waves back>

It's good you've ambushed it and are finding it helpful too. I don't know what your financial situation is obviously but going private does sound like it could be a good option- thank you welovegrapes. Thank you too to minipie, for helping me lift my head out of the pit of total dispair. I know I know, I'm being melodramatic and things could be a lot worse.

I reckon I might try my luck and ask for another test at 4weeks from starting the thyroxine then- I'm writing down all my numbers and so if it's still higher than 2, which I imagine it may well be after just a few weeks, this will give me more fuel to fight for action.

Did people find their levels came down quite quickly once they started the meds or is it a case of lots of testing and muddling with doses?

doyouwantfrieswiththat Sun 17-Mar-13 23:25:21

once on thyroxine I can conceive at the drop of a hat, however I'm very prone to depression in pregnancy and have spoken to a couple of other hypothyroid mums who've had the same problem. Not sure why but I read that oestrogen can inhibit thyroxine.

blondieminx Sun 17-Mar-13 23:40:52

I think they'll only do bloods 4-weekly as they need to allow time for the new dose to take effect.

They will only start you off on 50mcg then increase dose steadily at 25mcg intervals. The reason they do this is that levothyroxine causes your system to speed up and can give you heart palpitations etc- so they start you off gently!

see page 3 of this document which is the official NHS clinical knowledge summary

Ask your GP whether they have tested for thyroid antibodies yet and if not, request this is done during the next blood test.

the Thyroid UK site has lots of v useful information.

This article says its v important to ensure that your levels are kept under control and are checked at 36wks.

Hang in there! smile I was diagnosed in November 08, fell pg in Feb 09 but mc, fell pg again in the April and DD is now a gorgeous 3yo. Good luck! smile

Welovegrapes Mon 18-Mar-13 07:37:06

Boodle, I saw two different gps in my practise and had to see a third before they would agree to give thyroxine and even then they would only give a tiny dose. I went private, saw an endo, had my dose increased straight away and he then wrote to my GP and asked gp to refer me to endo's NHS clinic. If you are in London, De Hurel has a private practise and a clinic at Uch.

Really angry for you

Welovegrapes Mon 18-Mar-13 07:37:36

Dr not de blush

mercibucket Mon 18-Mar-13 07:41:32

My levels fell v quickly. I started on 25, went to 50 after a few weeks (I did this myself) then 75. I had to insist on going to 75 as my levels were 'normal'. Hey, I felt like shit, but why would that matter?!? Then I pushed again and got it to 100 and my tsh almost suppressed, think it is 0.3. I also tried t3 over winter and that went well (you can buy it off ebay lol, not recommending this!) As my t4 has always been low, even when tsh is fine. Then I realised I'd stopped taking my iron supplements and started them again and the fatigue has now gone
Good luck to you as well, boodles, get that fertility bod to wrtie to the gp

sunnyday123 Mon 18-Mar-13 08:24:46

I think your treatment will depend on your area. As so many people have the condition our doctors would no way do tests in pregnancy every four weeks! With my second pregnancy I didn't have one extra test and baby was fine. With third pregnancy I had a test once per trimester. I've also never seen an endocrinologist as I've been hypothyroid for over 11 years.

My levels are usually about 2.5-3 and as I say apart from the year after the miscarriage (it was a mmc at 12 weeks following by d&c which left my lining very very thin) it took me less than 6 months to conceive the second and third times.

I wouldn't over worry as my levels were sorted within about 4 weeks as as your symptoms are not bad you may be similar.

Welovegrapes Mon 18-Mar-13 09:50:19

Sunny, the NHS own guidelines now say it should be every 6 weeks

sunnyday123 Mon 18-Mar-13 10:14:50

Yes you are right - the article above says every 6 weeks for those newly diagnosed bu once per trimester for those already stable smile

Hi ladies, this is such useful information thank you. There is some hope in there to lift the spirits of my desperate impatient side, but also some good ammunition to make sure I take things into my own hands in the sense of making sure I'm monitored more often, and that my levels are low enough. The fact that even in December my tsh was 7.5 and they didn't do anything annoys me as I could have been getting sorted much sooner (or just not getting my hopes up) during those three months!

BoodleLovesPot Mon 18-Mar-13 17:13:21

WeLoveGrapes, do you mind me asking what your levels were like when you first got referred? I guess I'm worried that I'm under the magic '5' which (in this country at least) seems to be what is classed as 'normal'. (Which makes it extra appalling that Thunder had a TSH of 7.5 and nothing was done about it.)

boodle I have taken action.

See that link that blondie put up- the first one? It says in black and white that levels should be maintained between 0.2-2. And it's written by the nhs themselves as clinical knowledge summary. Ok so that's for people who are actually pregnant but it gives ammunition-no?

I have booked a telephone appointment next week and am going to start pushing for closer monitoring and an agreement that we're striving for <2 tsh. We'll see!

BoodleLovesPot Mon 18-Mar-13 17:48:11

Sorry, Thunder, I just meant it was appalling that they didn't do anything in December when your levels were 7.5! I know you have taken action and I am crossing fingers for you that now you are on medication, you will get updiffed soon!

I wish it did give ammunition, but I printed the relevant Clinical Knowledge Summaries off and took them with me to my last doctor's appointment. Even with it there, in black and white, the doctor still sat there and told me that it really didn't matter and that because I was below 5 he would do nothing to treat me. He then diagnosed stress and told me to sort my diet out...?! He didn't even ask what my diet was like!

I know what I need to do is just keep going in until they listen to me. (I've had 6 appointments since December.) It's just sad that I'm having to keep battling!

Oh no, boodle, sorry, I wasn't correcting you! I was saying that today I have actually done something- it was a bit of a dramatic news flash rather than a correction.

God that's so annoying, you're doing really well to keep battling. I realise I'm probably being really naive thinking I might be able to sort sonething out next week. It's not fair is it?

What are your t4 levels? And does that bit matter do you know?

blondieminx Mon 18-Mar-13 17:57:17

Boodle I am angry for you. Take that NHS CKS summary and a summary of your appointments so far to discuss with the practice manager. State that you are unhappy as 1. It's not an efficient use of anyone's time to fail to treat so you keep coming back and 2. The GP should be practicing in accordance with the guidelines - if he's not, does that have implications for their insurance policy?

Let us know how you get on.

BoodleLovesPot Mon 18-Mar-13 20:49:28

Oh, I see, Thunder! I catchya' drift now! smile

I don't know my T4 levels - they hadn't tested them before (despite telling me that they would when I went in Dec) so I went back and asked for them recently. These are the results that I have been told (over the phone) are "normal" but haven't got copies yet.

Thank you, Blondie, I am going to try to get hold of a copy of my results this week. If I haven't heard from the hospital for my fertility referral by then, I will do what you have suggested. If I do get my appointment through, I'l concentrate on that and hopefully they will agree with me about TSH levels anyway and will send my doctor packing with tail between legs! (Wishful thinking, maybe...)

Last question to the lovely group. Does anyone have any papers or advice that says specifically that women who are TTC shoud have TSH levels <2?

I want as much ammo as I can get for next week!

blondieminx Tue 19-Mar-13 08:40:30

thunder please see the first link in my long post - it specifically refers to "women planning a pregnancy" smile

Welovegrapes Tue 19-Mar-13 08:41:03

Hi blondie I've saved that document to take with me. Unfortunately I think it only says about tsh being 0.2-2 once people are pregnant. Doesn't mention getting to this level beforehand?

Thanks grapes, off for a nosey!

blondieminx Tue 19-Mar-13 09:08:52

Thunder you are looking at the grey headings at the top of page 3 of that 36 page document, right?

Clearly if levels are to be targetted at <2 while pg, it makes sense to have those levels in place while TTC?

duchesse Tue 19-Mar-13 09:19:19

I am so sorry about your MMC.

Just on the off-chance that it could help anyone I'm going to post my experiences of TTC with low (and undiagnosed) thyroid levels.

Briefly, my thyroid started to go pfffft while I was working in a very stressful job in 2001-2003. In June 2003 I came off contraception (mirena) with a view to ttc. My thyroid nose-dived further- we'd just moved to Canada in mid-summer and it was 27C yet I was constantly shivery and with goose bumps- impossible to get warm. I spent a year walking 6-10 miles a day in an effort to keep warm, did loads of other exercise- skiing, rollerblading, snow-shoeing, x country skiing, swimming etc, eating normally, yet gained 1 stone in a few weeks after having the mirena out. Came back from Canada after a year 2 stone overweight -which I've never managed to shift since. I was pretty convinced I was hypothyroid as my BBT was 35.6C most of the time, with occasional days just before my period at 36.2C (when I felt much better incidentally). Every single day felt like a struggle to stay warm. I so wished later that I'd been to see a GP in Canada as the North American treatment protocol is a lot less conservative than here. I just thought my body to was re-adjusting to not having the Mirena and my hormones would eventually sort themselves out. I was wrong.

As far as ttc was concerned, my periods weren't normal throughout that year, so although I suspect several very early mc (around the 4-5 week mark) nothing happened in terms of pregnancy. I was becoming crazy what with the failing to conceive and the thyroid issues. I honestly thought I was going mad at times.

In 2005 after struggling through yet another year of life I went to my GP. Had a thyroid test. TSH was 4.79, which my GP declared "normal" and tried instead to put me on antidepressants (because clearly what a woman whose BBT is so low that nothing works properly any more needs is antidepressants hmm). I walked out of his surgery and never went back to him.

Late in 2005 I started running in an effort to keep warm - and it was a BIG effort most of the time. I still didn't lose any weight but I did start to feel a lot better. And then bugger me if I didn't get pregnant. Had problems with bleeding even from before the pregnancy was confirmed, which continued for the next three months. I was hospitalised twice with heavy bleeding and enormous pain. Every time the baby was fine, wriggling away in a sea of blood. Two days before the dating scan I just felt that the baby had died. Can't explain it- I just knew. At the dating scan, it had died (at 12 w 6d). MMC.

I decided to pursue the thyroid problem things again. Went back to GP. TSH was by chance on that day just a smidge over 5, so I was referred to an endocrinologist. By the day of the appointment, it was back to 4.something. So they said "subclinical" and refused to treat and discharged me. (you can imagine how angry I was by then).

Throughout this time I was having mc at 4-5 weeks (what they call "chemical" pregnancies). I bought a bulk job of sensitive sticks so I have a rough idea how many times I was pregnant in the years 2005-late 2008 and it's well into double figures. I calculate that I was pregnant in probably 1 out every three cycles.

In 2008 I started running again. And bugger me if I didn't get pregnant again. At 40. And this one stayed by some miracle. At 11 weeks I saw a lovely obstetrician specialising in endocrine stuff who said "if you have symptoms of hypothyroid then you are not subclinical" and put me on levothyroxine and treated me through the pregnancy. It absolutely changed my life- in fact I have my life back. And I have a gorgeous, gorgeous child into the bargain. I will never be thankful enough to that obstetrician (and also to the one who saved me and DD3 later!).

So, 6 years ttc, to the edge of madness (and beyond at times), 12-15 early mc and one 2nd trimester one, all to avoid the cost of £1.24/month to the NHS. I wish I had been a lot more assertive with my GP a lot earlier.

"If you have symptoms, you are not subclinical" should be be pasted up on every GP's wall imo. And they should bloody well stop trying to put people on ADs when the problem is something else entirely.

Sorry, it's actually quite long.

Welovegrapes Tue 19-Mar-13 11:39:58

Duchesse, I am so very sorry to read about your mc and years of struggle to get help. So glad to hear you had a successful pg in the end.

I was also put on ADs and told I was depressed. I felt low, anxious, tired and cold all the time, but because I was thin I didn't fit the 'classic' hypothyroid symptoms. I was thin because I was too down to eat properly, I think. The ends of both eyebrows had almost disappeared too. I should have been recognised as high risk for hypothyroid, because I had already had hyperthyroid, which is a known risk factor.

I was only diagnosed because I insisted I was symptomatic and changed GP, then saw an endo privately. My t4 was 12 iirc and tsh 24. At my endo clinic that would be considered as tsh way too high for TTC - should be under 2 and t4 they prefer over 14. I had work medical screens every year and when I look back at the scores now I should have been on thyroxine 3 years before I was diagnosed.

My AF became much more regular once I was on the thyroxine and no more mmc.

grapes, how long do you think it took for the meds to take effect.

duchess, I'm so sorry to hear of your experiences. You have been through the mill. Thank goodness you've got your life back now.

Yes blondie that makes perfect sense. I was just looking for it really spelt out but hopefully my doc will be open and agree with me. unlike poor boodles

duchesse Tue 19-Mar-13 21:23:40

Grapes with a TSH of 24 you should most definitely have been treated! Your GP was absolutely out of order not requesting that simple test at least. It strikes me that far more women than men are hypothyroid, and many doctors seem very keen to dismiss many of the symptoms as normal older woman stuff. It makes me really angry and is why I always see a female GP now.

mercibucket Wed 20-Mar-13 11:08:17

That's very sad, grapes,I hope you are ok now

It is usually a quick process for tsh to come down, unless there are issues with converting from t4 to t3, or other issues. It takes longer for the body to heal, as it has not been working properly, hence the other deficiencies that need treating. If you are ttc, I'd wait a few months personally, which is purely my personal view based on how pregnancy saps you of vitamins anyway

duchesse Wed 20-Mar-13 14:16:11

Yes, absolutely wait a few months if you can and take a good pregnancy vitamin for that whole while including lots of Vits B.

My miscarriage foetus was anancephalic, which is a catastrophic neural tube defect, and DD3 has a Y shaped sacral cleft, which a very minor neural tube defect. My first three children were absolutely fine and I'd never had any Y sacral cleft issues before.

The only thing I can think is that I wasn't converting food efficiently (because when your body temperature is that low even your own enzymes and digestion don't work properly) and it had left me deficient in various vitamins and minerals.

Welovegrapes Wed 20-Mar-13 14:49:16

Thanks for all the kind words everyone. I still feel very sad about the mmc sad

We had karyotyping done on the baby's tissue and the baby was perfect - there were no chromosomal abnormalities, which really makes me suspect the thyroid could have been responsible, though of course we will never know for sure.

minipie Wed 20-Mar-13 14:49:26

that's interesting duchesse. as I said up thread, I had a chemical pg the first month of being on thyroxine and got pg with DD the second month. DD was premature and has a sacral dimple and tongue tie, minor midline defects. So far she seems completely healthy but I do wonder if I should have waited a few months longer for the thyroxine to kick in properly.

HazleNutt Wed 20-Mar-13 22:23:11

What has been said, TSH below 2. Even if not pregnant, most experts now recommend keeping it below 3-3,5, not 5.

And insist on getting your T4 tested as well, TSH does not always give a full picture - my TSH is 0,1 at the moment, but t3-t4 just mid-range.

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