Does anyone deal with hypothyroidism?: Just found out... - NCT


41,033 members14,503 posts

Does anyone deal with hypothyroidism?


Just found out that I have hypothyroidism along with antibodies against the thyroid tissue at 10 weeks of gestation. Iodine is important in early brain development and maternal hypothyroidism has been linked to mental retardation in the offspring. Apparently it is better to be treated as early as possible but I missed the developmental window of the first trimester. Has anyone else been diagnosed between first and second trimester and being treated? I would appreciate heating your experience as I am frantically trying to find an endocrinologist to treat me.

10 Replies

Are you in the uk? It shouldn't be left to you to 'find and endocrinologist) - you should be referred to your local joint obstetric-endocrine clinic. What are your most recent TFTs (TSH, free T3 and free T4). Being hypothyroid in pregnancy does not mean you will be for life, although it does need treating, as you point out there is the risk of the very un-PC condition 'cretinism'. Can't remember the exact figures as I'm not an obstetrician and am thinking back to my MRCP revision but I think it's something like 5% of women develop hypothyroidism in pregnancy and of those with antibodies 50% will have thyroid dysfunction post partum and 50% of these will develop non-gestational hypothyroidism.

Go see your GP and request a referral, or if you've already seen an obstetrician, question when you will be seen in joint clinic. Xx

Hidden in reply to DrFluffy

Dear Dr Fluffly,

Thank you very much for your response. Yes indeed I am based in UK. But as it is not cost-effective for NHS to check for everything antenatally, I had a few extra tests done privately. I have no prior history of thyroid disfunction (past TSH levels normal) and no one in my immediate family has any issues, but my test results revealed an issue. I have booked appointment with my GP, so hopefully I'll get a referral. I am also searching for an endocrinologist in case my GP does not refer me or it takes too long to get referral and treatment (my understanding is that timely treatment is developmentally crucial- Downing et al., Thyroid. 2012 Jun;22(6):625-30). So here are my results:

TSH: 6.675 µIU/ml

T3: 2.3 nmol/L

FT4: 13,91 pmol/L

anti-TG: 175.5 IU/ml

anti-TPO: 327.5 U/ml

As I have not seen my GP I have no official diagnosis yet, but the lab pathologist suggested I have subclinical hypothyroidism with thyroid autoimmunity. I am not sure if he meant Hashimoto's disease but I had not been tested for it before.

Looking at the literature I realised there is very little data on maternal and fetal outcomes for subclinical hypothyroidism in pregnancy, and almost none in combination with Hashimoto's.

I am a developmental neurobiologist so I wonder about the impact of the antibodies on the developing thyroid of the baby especially in the first trimester. Apart from that I was looking at gestation outcomes and was happy to find that although there is a statistically significant correlation of hypothyroidism with e.g placental abruption, miscarriage, pre-eclampsia, foetal mortality, pre-term delivery, the actual increase in risk is not that big (for me): basically an increase of 2-5%.

With regards to developmental outcomes, the good news from one of the few controlled trials (Lazarus et al, N Engl J Med. 2012 Feb 9;366(6):493-501) is that the children of treated hypothyroid women did not differ in terms of IQ from euthyroid women. However they did not measure outcomes in psychomotor and language development, behavioural problems, spatial awareness etc. In the paper they acknowledge the numerous literature on the association between hypothyroidism and developmental issues but they also remind us that the majority of the studies are observational and thus subject to confounding.

Anyhow, hopefully I'll receive treatment to start with. Then I'll worry if I am under or over-treated! (great work on this by the Harris Birthright Research Centre for Fetal Medicine)

DrFluffy in reply to Hidden

Trust me - being a medical doctor doesn't protect you from crap GPs!

Be persistent - take a copy if the NICE guidelines with you and demand referral. Is this your first? If so, you should meet your obstetrician at 16 weeks.

Are you attached to a university at work? Do you have a med school or midwifery school? If so, look at who covers either high risk obstetrics, maternal and foetal medicine or endocrinology and approach them by email for an opinion - it feels awkward but we do tend to try to look after our own as there aren't many perks of working in the NHS!!


Hidden in reply to DrFluffy

Thank you Dr Fluffy! Unfortunately I lost my job so I no longer have formal access to the uni. But I called in a favour today from a friend of a friend who is an endocrinologist at a teaching hospital. He confirmed the diagnosis and my interpretation of risk as well as the need to be treated immediately and the fact that TSH reference values are different in pregnancy (which the GP did not recognise).

Bless the endocrinologist, he prescribed levothyroxine which said would leave no option to the GP but to refer me. He also said that thankfully my hypothyroidism is at its beginning and that I am still within the right developmental window for treatment so the baby should be fine.

Yes it is my first baby at the age of 38... I feel extremely lucky to have found somebody who can help me..

Thank you so much for your advice! I am so glad there is a doctor on this forum :-) thank you for taking the time to write to all of us.

DrFluffy in reply to Hidden

Great - so glad you are getting sorted out!


Hidden in reply to DrFluffy

Unfortunately my worst fears were materialised.

Although the GP agreed that I have subclinical hypothyroidism with thyroid autoimmunity he denied to refer me as he thinks my levels are not dangerous. I told him that the reference levels in pregnancy for TSH upper limits are between 2-3 µUI/ml and he just dismissed me. He just said that they will just have to check again at the end of second trimester to see if my TSH levels got up. When I mentioned the article on the crucial developmental window of the first and second trimester and that levothyroxine seems to have no benefit if given in the third trimester, he just gave me the "you are not a medic" look.

Went home, had a good cry and then checked the NICE guidelines and bingo: "subclinical hypothyroid women should be treated immediately with levothyroxine while waiting to be seen by an endocrinologist". So wish me luck for second fight tomorrow to do the best for the baby...

I was first diagnosed as having an underactive thyroid during my first pregnancy, and started taking thyroxine at about 12 weeks, the doctors increased the dose at each blood test until the levels stabilised, and I have continued to be monitored ever since (oldest child now 4 1/2). I did read all the frightening information about the possible damage to brain development, but my son seems clever and has no sign of "cretinism", I wish I hadn't worried about those scary stories.

I have just had my second child (now 3 weeks) and I saw a specialist at the hospital every 6 weeks through the pregnancy, and have just had another blood test to check the dose is correct post-birth. My experience is that the GP monitors levels/prescriptions normally, and a specialist during pregnancy. My new baby also seems fine, but I haven't yet had the results of her heel prick test for thyroid function.

Good luck, I expect your baby will be fine, and you should feel better (more energetic and focussed) when your medication starts working.x x x

Hidden in reply to MuminHastings

Thank you MuminHastings! It sounds like you have a great doctor. From what I've read, it seems you were managed optimally. That is great news and I hope I'll have a similar experience :-)

I had my thyroid out at the age of 21, many cases you will read about are from chronic mismanaged or unmanaged people. The doctor has identified the levels, now they will monitor and treat, continue to monitor your symptoms and go for regular blood tests and everything should be ok. The internet for all its benefits, has a lot of sins, and scaring the bejessus out of us pregnant ladies is one of them!

Hidden in reply to gingerbaby

Thank you gingerbaby! Hopefully I'll receive a referral