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LowTSH level - GP doesn't know/care, nowhere else to turn, is this OK?

(15 Posts)
Hermano Tue 29-Nov-16 17:15:16

Hi,

brief history: TSH level measured at 5.2 in march, so consultant at Guys assisted conception unit (ie an expert) ordered my GP to put me on 50mg levothyroxine.

TSH level dropped over the last few months (~3 in June, ~2 in Aug, ~1.3 in Sept, 0.5 in Oct), I've conceived naturally and it was measured yesterday as 0.09. Is this now getting too low?

The GP receptionist just told me 'it's all fine and normal' but she isn't an expert. My GP doesn't know anything about this at all himself, when I asked for the prescriptions he just agreed cos Guys asked him to, he's never heard of TSH levels being linked to infertility.

I'm 13+3 and really dearly want to hold onto this baby. Am I at risk of miscarrying? Who can I ask to get an expert opinion on this? My midwife team took the info at my booking apt but didn't seem overly bothered. I'm supposed to be passed to an obstetrician but that hasn't happened yet.

I'm really worried and just want an expert to actually give a shit about my pregnancy. Where shall I turn with this?

I'm loud and shouty so will demand help from the right person but since my GP doesn't know or care I don't know who that person is.

Thanks.

wintersdawn Tue 29-Nov-16 17:25:16

I was on 50mg of levothyroxine before I was pregnant and for both pregnancies they immediately upped my amounts by 50mg at the same time they registered my pregnancy.

I was also tested for my levels during my pregnancy and again 3 months after. I went back down a little after my first but have stayed on 125 after my second and he's nearly 4.

I haven't heard thyroid issues having an effect on fertility or on keeping a pregnancy but from a personal point of view my thyroid issue is one of the indicators that I have that show I didn't developed milk glands during puberty (can't remember the official name) the result being that I couldn't breastfeed as I can't produce milk.

MrsChrisPratt Tue 29-Nov-16 18:09:32

Thyroid function has a huge impact on fertility and impaired function can increase the risk of miscarriage. You should be monitored regularly during first trimester and your levels tested at least once in the second and third trimesters. I'm not sure if these are the UK recommended levels, but should give you a rough guide:

Recommendations for Testing for Thyroid Disease During Pregnancy

The new recommendations for TSH levels during pregnancy are the following:

First trimester: less than 2.5 with a range of 0.1-2.5

Second trimester: 0.2-3.0

Third trimester: 0.3-3.0.

Take a look a the British thyroid foundation website for more info (sorry don't have time to find it for you right now). GPs generally are a bit rubbish when it comes to thyroid amd pregnancy - you should have been referred to a consultant so ask your GP or midwife to do so. My only other advice really is to be pushy- ask to be referred for bloods if need be and always ask for the actual results, don't be fobbed off with 'ok' or 'within range' as the person telling you that may not be reliable. As your TSH is lower rather than high, I think that is less worrying but definitely follow up if you are not happy.

Teakind Tue 29-Nov-16 18:10:41

Hello, I was told it they ideally like it to be between 1-2 and the lowest they like to see is 0.4. I went down to 0.4 so changed from taking 50 everyday to taking in one day and 25 the next. I haven't had my level checked since but did have a meeting with an endocrinologist who said I'd done the right thing. (I'm not telling you to do this btw!)

Can you call your midwife? She was the one who referred me to the endocrinologist and I'm surprised they didn't refer you. Alternatively, is there a different GP you can see at your surgery?

How frustrating for you!

MrsChrisPratt Tue 29-Nov-16 18:11:19

Just FYI, my TSH has gone a little on the low side but my consultant was happy with this and would much rather low than high. I am on a significantly higher dose than you though and have had an underactive thyroid for 10+ years prior to pregnancy

GenerationEx Tue 29-Nov-16 18:20:36

You should have been referred to the pregnancy endocrinologist at booking from my own experience. I would call the mid wife and demand an appointment with the antenatal endocrine consultant and explain that your TSH is lower than the desired range for pregnancy. For what it is worth, the major risk in the 1st trimester is to be hypothyroid and being a little bit "over medicated" is preferred to being under medicated.

MouseLove Tue 29-Nov-16 18:27:12

Hi everyone. Sorry to hijack. I'm currently waiting my appointment to see someone about my thyroid issue. I'm hyperthyroid? What should my numbers look like with an over active thyroid? I'm currently TTC. Thank you so much. X

PossumInAPearTree Tue 29-Nov-16 18:32:46

Can you contact the secretary of the Guys consultant and beg for help?

Hermano Tue 29-Nov-16 19:40:04

Thanks for the reassurance, both that this isn't an emergency and that I should push for some support to get this right. I will phone the midwives tmrw and demand an appt with the endocrinologist.

I'd love to call Guys but I was a paying punter there (already got a DD so no NHS funding for secondary infertility) and we signed off from them when we moved out of London in summer. New GP gives about as much of a shot as old one (though at least I don't have to fight new one for levothyroxine tabs) so didn't bother mentioning earlier.

Midwives will be hounded until they give in! Good to know I'm outside the ideal range now, all good fuel for the phone call.

I can't believe how much hard work it is.

PossumInAPearTree Tue 29-Nov-16 19:44:39

I doubt the midwives will be able to refer you. Either your gp or ideally an obstetrician needs to refer you. You'd be best off ringing and asking to speak to the antenatal clinic sister at the hospital, explaining the situation and trying to get her to sort out a clinic appt asap.

PossumInAPearTree Tue 29-Nov-16 19:46:09

Sorry, just seen someone said their midwife did a referral.

Guess it's different in different areas. But if your midwife can't then try clinic sister.

MrsChrisPratt Tue 29-Nov-16 19:46:18

The midwife referred me, so probably differs by area.

MrsChrisPratt Tue 29-Nov-16 19:46:38

Cross post!

Hermano Wed 30-Nov-16 08:48:19

I just spoke to midwives and they categorically stated they can't refer to endocrinologist and levothyroxine level management is a job for the GP.

My GP does not give a single shit, thinks this is absolutely fine. But as I say he thinks this from a position of not even knowing that thyroid function is something to be aware of for problems TTC, and clearly has no idea what the recommended range is for pregnancy.

The midwife told me I should have had bloods taken once a month since registering my pregnancy. I have had this, but only by phoning up the GP and pushing for a test, not booked by the midwife team at all (as should have happened)

I have a telephone apt with a different GP on Monday so hopefully I'll be fine until then and I can ask for a referral to an endocrinologist for this. But realistically by the time I get seen weeks will have passed, perhaps even a couple of months. So again any danger in the next fortnight will be long passed.

I'm tempted to start adjusting my own medication and only take half my 50mg pill every other day. My TSH level is dropping and dropping and is below 0.1 now, so I don't want to risk it dropping further. Since it's already dropped from 1.26 (Aug) to 0.51 (Oct) to 0.09 (Nov) it feels like it will drop further fi I keep up my current dose.

So frustrating.

Teakind Wed 30-Nov-16 13:06:21

That just seems ridiculous!! How annoying!

I hope your telephone appointment is more successful. Could you afford to go privately for a consultation with a endocrinologist in the meantime?

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