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Just found out about hypothyroidism whilst TTC

(54 Posts)
Thundercatsarego Sun 17-Mar-13 13:27:55

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!

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

Message withdrawn at poster's request.

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

Message withdrawn at poster's request.

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

Message withdrawn at poster's request.

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

Thundercatsarego Mon 18-Mar-13 10:37:03

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.)

Thundercatsarego Mon 18-Mar-13 17:19:21

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!

Thundercatsarego Mon 18-Mar-13 17:51:08

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...)

Thundercatsarego Tue 19-Mar-13 08:12:13

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

Message withdrawn at poster's request.

Thundercatsarego Tue 19-Mar-13 08:53:49

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

Message withdrawn at poster's request.

Thundercatsarego Tue 19-Mar-13 15:53:54

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

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