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!

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.

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.

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.

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.

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 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.

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

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.

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.

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?

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!

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

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!

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...)

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.

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?

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!

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 17:13:21

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.)

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!

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

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 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.

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

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