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Should I increase levothyroxine dose myself?

(31 Posts)
blamber Fri 21-Mar-14 14:50:35

I think I'm almost 5 weeks pregnant (not exactly sure, irregular cycles!) and I'm hypothyroid. In the nice guidelines I read that they recommend increasing the dose of levothyroxine immediately and then refer to a specialist. I also read that there may be an increased demand for thyroid hormones from 5 weeks onwards.

I saw the GP and while he is referring me to an endo, he said not to increase my dose yet. My TSH levels are ok (tested a couple of weeks ago, was about 1.4), but they didn't do ft4 levels. I obviously don't want my TSH to rise too much, so I was thinking of starting taking 2 tablets extra a week. I'm on 100 mcg per day now. Of course I also don't want to go hyper. What should I do?

WolfMoon Fri 21-Mar-14 14:54:36

No. If your GP has told you not to do so yet, then it's best not to. If you're really concerned though, ring up and ask for another appointment. It should have been better explained to you why your GP has advised you not to increase your dose.

LadyGoneGaga Fri 21-Mar-14 15:01:10

GPs are pretty shit at this though and unfortunately this is a time critical issue as it can effect development in first trimester. I would print off the NICE guidelines and take down to the GP with you and say you want a trial of a higher dose until you see the Endo. It is fairly inevitable that you will need more and better to be on top of it. My GP fobbed me off. I spent the first tri feeling like shit as had gone very Hypo. Very angry as put the baby at risk.

hellymelly Fri 21-Mar-14 15:03:05

No, don't increase without the GPs advice, hyper would not be good while pregnant, it puts a strain on your heart, and if your level was 1.4 then yo are nowhere near needing to up your thyroxine. You would have to go really underactive for it to affect the baby, so try not to worry and just get your levels checked regularly. My TSH went up to 8 while pregnant, but for some reason the endo said not to go onto thyroxine (at the time I hadn't been diagnosed, but I have Hashimoto's) My baby was fine, although I was really cross when I read up on pregnancy and thyroid later. If you go above 2.5 then you need to increase your thyroxine but do it in small increments.

livingzuid Fri 21-Mar-14 15:22:28

No. Don't increase. It doesn't make much difference, a couple of weeks or so. You can end up on too high a dose which is just as bad. Your gp has referred you to a specialist as the guidelines for the correct amount of thyroid dosage will vary from individual to individual in pregnancy.

peeapod Fri 21-Mar-14 15:41:49

please dont increase.. leave it to the pros. mine didn't increase until week 25.. it stayed the same all through the first 2 trimesters..

MrsM2013 Fri 21-Mar-14 15:56:43

Why would you blatantly ignore the advice of a trained health care professional??
NICE issue 'guidelines' which are exactly that- guidelines. This does not mean they are a strict code which must be rigidly adhered to.
If worried, go back and talk to him/her. Do not assume incompetence, much better to ask why.

notadoctor Fri 21-Mar-14 16:21:07

Another no! I am 39 weeks pregnant and hypothyroid and my dose hasn't changed at all. If you're worried, you can request extra blood tests whenever you want them.

blamber Fri 21-Mar-14 16:31:44

I will wait till I have seen the endo! I'm just scared I'll go hypo.

Chocotrekkie Fri 21-Mar-14 16:37:41

Mine didn't need to increase at all through either of my pregnancies.

Topseyt Fri 21-Mar-14 16:46:11

No, no, no. Do not increase it without proper medical advice. Hyper is just as bad in its own way as hypo, and believe me I have been both.

See the endo first. You may be advised to have some additional tests, which will reveal whether or not your meds need to be adjusted.

Too much thyroxine is toxic and accelerates all bodily systems, just as too littlle makes them go too slowly.

livingzuid Fri 21-Mar-14 16:52:13

If you were receiving no levothyroxine then you would push. The fact you are on a dose already working for you pre pregnancy is very positive. My dosage was only increased ever so slightly from my pre pregnancy amount and had to be reduced from what the gp gave me when I first spoke to her about my pregnancy. So you really must wait to see the specialist.

DomesticGoddess31 Fri 21-Mar-14 18:42:49

I'd go back and insist on a ft4 test. And I wouldn't take the GPs word for it. TSH of 1.4 sounds fine though.

mummywithLplates Fri 21-Mar-14 20:41:44

I know it's worrying but I'd wouldn't up the dose without Drs advice. I didn't need to up my dose until much later on in pregnancy and had regular blood tests to monitor my levels.

SpeckyB Fri 21-Mar-14 22:22:48

I would ask your doctor for a blood test. My Endo did 2 weekly blood tests after I found out I was pregnant until my levels stabilised at 14 weeks. I went up gradually from 125/150 a day to 200mg a day at 12 weeks until birth.

The blood test reaults will be useful for the Endo too.

Jcb77 Mon 24-Mar-14 12:34:32

And I went down, from 150mcg, where I was admittedly (biochemically if not symptomatically)hyper, just before pregnancy to 125 for most of the first and half the second trimester, then down again to 100 where I am now. I had been having to increase slowly pre pregnancy. I too was very worried about not havin my dose increased, but my TSH levels were always fine. 1.4 is well off the level you'd go up at, and being hyper increases miscarriage rates. Regular testing if you turn out to be unstable is probably safer than just upping your dose randomly. You are a unique creature and your thyroid hasn't read the NICE guidelines! Most cases are dealt with by gps around here and the fact you've been referred to an endo so early is good.

blamber Tue 25-Mar-14 15:27:52

My endo appointment isn't until May though, when I should be about 12 weeks along. That just seems too long to wait!

Rubyshoe Tue 25-Mar-14 15:36:13

Hi Blamber. I am also hypothyroid and 13 weeks pregnant. This is my second pregnancy as unfortunately our daughter was still born at full term last summer (freak event nothing to do with thyroxine). I am under consultant care by an obstetrician who specialises in complex pregnancies and endocrine (so I fall into both). He clearly told me prior to this pregnancy that the desirable range for TSH in pregnancy is between 3 and 4. So no I wouldn't increase it just yet. If you are worried get it checked regularly. My last reading was 3.9 and even then he only increased me from 75mcg to 100. Hope that helps x

FuturePerfect Tue 25-Mar-14 15:48:27

Any change in dosage of thyroxine takes a while to have an effect. A doctor friend of mine told me that we could actually take our dosages monthly instead of daily, and it would be much the same (not suggesting anyone should do this!) So don't worry too much about waiting for the test. My dose was also reduced during my last pregnancy, since I was slightly over-replaced before. Also, depending on what type of hypothyroidism you have, there could still be some sporadic thyroid activity, so it is best to get bloods done.

DinoSnores Tue 25-Mar-14 21:19:02

The advice given by Addenbrooke's Hospital to women with thyroxine is to increase their dose by 25mcg daily as soon as they know they are pregnant or by doubling the normal dose twice a week, aiming for TSH <2.5 throughout pregnancy.

KitKat1985 Wed 26-Mar-14 12:22:52

If your GP has checked your levels and you are fine at the moment, then I really think you would be foolish to increase your dose on your own at the moment. Wait to speak to the endocrinologist.

NearTheWindymill Wed 26-Mar-14 12:38:13

Oh FWIW and my DC are 19 and nearly 16 now. I had severe graves followed by subtotal thyroidectomy before starting a family because I couldn't get clear guidance about radioactive iodine and couldn't reconcile the potential harm to my gonads if I couldn't travel on public transport for a week afterwards for the sake of the general public's gonads.

The thyroidectomy meant I became hypothyroid and I have taken 100mcg of thyroxine for more than 20 years. The advice then and I still have the written advice of Sir Richard Bayliss, that throxine rarely needed changing during pregnancy and most often should not be tampered with providing levels of TSH remained within the normal range. It also stated that in pregnancy only TSH was the reliable indicator because the other markers (T4 and T3 I think) became unreliable with pregnancy.

If you are within the normal range and if your GP has referred you to an endo that is wonderful. I was satisfied that the TSH would be tested via maternity appointments (I was on a high risk team) but in spite of many conversations where I pointed out the TSH was essential the bloods came back repeatedly testing for everything other than the TSH - always the T4 and T3 and that was in spite of me checking what was put on the form and countersigning it. The excuse was that the people in the testing labs took the final view and did the regular check usually for thyroid levels unless accompanied by a note from the consultant. When I eventually got the TSH results at 36 weeks the TSH had gone below and an appointment was made for me with the Registrar who took more blood and made a referral. I actually went into labour three days after that and had at 36.3 days a perfectly healthy 7.5lb baby boy. The drop made not difference to the baby although I think it made my recovery and return to usual energy levels a bit slower.

When I was pg with dd I knew the ropes better and ensured the TSH was tested regularly and it didn't drop below the normal range at all. That pg continued to 41.5 weeks and another very healthy baby although with her, probably because I made a fuss, the hospital did insist she had a proper thyroid blood test and we had to stay in hospital until she was 48 hours old to have that done. DS just had the usual heel prick test done by the midwife.

I don't you've any need to panic and that all will be well.

Congratulations on your pregnancy - good luck.

blamber Wed 26-Mar-14 13:24:34

Thanks everyone. It's all very confusing. I keep reading the recommendation to increase immediately and regularly have your levels checked, but then they only provide an appointment with a endo 3 months in! I don't want to mess with my meds, so I'm hoping it will be okay when I get tested next. At least as my levels are fine now, I have some leeway.

Dixy30 Wed 26-Mar-14 15:34:31

I would right away - I was on 100 and upped to 125. Had blood tests at 4wk a few days and private endo increased while waiting for results. Not worth risking !

DinoSnores Wed 26-Mar-14 18:08:24

blamber, have you previously seen an endocrinologist or has this all been managed by your GP? If you have previously seen an endocrinologist, give his/her secretary a call and ask for a call back about advice? Some hospitals have Endocrine Specialist Nurses who could help. I have to be honest and say how much it frustrates me how often women with thyroid disease in pregnancy are just not treated properly despite very, very guidelines.

www.patient.co.uk/doctor/thyroid-disease-in-pregnancy

"Women already on thyroxine before pregnancy should have their dose increased by approximately 30% at the beginning of pregnancy and have TSH and T4 levels checked every eight weeks."

https://www.endocrine.org/~/media/endosociety/Files/Publications/Clinical%20Practice%20Guidelines/Thyroid-Exec-Summ.pdf

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