Wanted: Medical sources on under-medicated hypothyroidism and pregnancy. Thank you.

[Kitty1watson]

UPDATE

I have just learnt my results from 25 February were

TSH 0.84

FT4 10.1

FT3 3.0

The Consultant provided no reference ranges, has no problem with my results and no intention of seeing me again. Given the usual reference ranges I have seen with prior tests, I am devastated. If the ranges are the same as they have been in the past (12.0-22.0 for FT4 and 4.0-8.3 for FT3), my FT4 and FT3 are very low and I have had increases to medication on the basis of higher levels in the past.

Are there any official advocacy people who can help me make a complaint?

=======

Hello. I am sorry to post again, but does anyone have any links to credible medical sources that I can take to my doctors, on:

a) the effects of being under-medicated, or poorly-medicated when pregnant, and

b) large for gestational age (LGA) foetuses and babies and whether this is linked to

i ) having a poorly-treated underactive thyroid, or

ii) another problem ,eg lack of absorption or conversion of T4 only treatment?

I have read a number of webpages on this but I will need credible medical sources, otherwise they will just laugh me out of the room and put me down as the crazy patient who consults Dr Google rather than taking medical advice.

I have tried to be specific about the help I am looking for and why, but do let me know if it is still not clear.

Large babies - twin pregnancy

I am 28 weeks' pregnant with twins and both are large for gestational age (over 90th percentile). My son was born at 9lb7oz and that also constitutes an LGA infant. At that time, I had not yet been diagnosed with a thyroid problem, but had been suffering with the symptoms for over 4 years. I have now been told that I possibly have pituitary disease but this is as yet not clear. My last known result was suppressed TSH and low T4 at the same time. I have not been sent the results I was promised on 25 February by the consultant (TSH, T4 and T3) and no-one is answering the phone. The consultant has confirmed that TSH alone is no use, as I have had low T4 with suppressed TSH before and this may indicate pituitary disease.

Reason for request for medical sources

The trigger for my request is that I was told by the sonographer yesterday that I should ask my midwife to order a glucose blood test, as diabetes is the most common cause of LGA infants. My urine tests have always been "normal" but the blood test is apparently more detailed. I also asked the midwife today to run TSH, T4 and T3 tests, because I understand that another cause (that no one will acknowledge), is hypothyroidism. An underactive thyroid apparently has an inverse impact on growth hormones, leading to overly large babies.

Despite consulting a doctor at the surgery, my midwife was told she had to call the lab herself in order to get anything other than TSH tested - the GP said they couldn't help. She did this and was told by the lab that they would test T4 and T3 but I would have to pay privately for that, and they would only test TSH for free. I was so shocked given my history, queried pituitary disease and pregnancy (and the potential risks of having too little thyroid hormone when pregnant). My levo was increased from around 12 weeks of pregnancy by my GP, but only by 25mcg. I have never experienced an improvement in my symptoms whilst taking levothyroxine (starting at 25mcg a few years ago and rising to 175mcg).

I want to write a complaint letter to the GP surgery, potentially copying in the consultant, as I feel that I have come to the end of the road. No-one is listening to me and no-one has any interest in ensuring that I am treated appropriately, or that the babies are healthy. I am very worried about how large they are going to get in the next few weeks. If they continue to grow at this rate, they will be 8lb each at birth (37 weeks). Average weight for twins is 5.5lb. I am only 5'3" and am terrified about how much bigger I will get. At 24 weeks, I was very nearly the same size as I was at 40 weeks with my LGA son. I am definitely bigger now, at 28 weeks. The twins have each gained over a pound in 4 weeks between 24 and 28 weeks and one is so much larger than average, it wasn't even on the chart. The markers were just floating around on the page next to the chart, effectively meaning that 100% of babies are smaller than it at this stage of pregnancy.

Many thanks for any help you can offer.

[MaisieGray]

In case you haven't already got them, these are the key documents that underpin NICE guidance on hypothyroidism in pregnancy regarding what treatment is required and why, and which hold good whatever your pregnancy ie if you should be being treated for your hypothyroidism, and are not, irrespective of your individual concerns regarding your twins, these will provide the standards that follow through to the NICE guidance. However, I've not read every word to know if there is any mention of particular concerns regarding twins, nor unfortunately, do I have any separate articles on the effect on twins, of (untreated) hypothyroid mothers, LGA or otherwise, I'm afraid.

academic.oup.com/jcem/artic...

karger.com/Article/FullText...

onlinelibrary.wiley.com/doi...

liebertpub.com/doi/full/10....

[Kitty1watson in reply to MaisieGray]

Many thanks, I will read these tonight, after work.

[Karenk13]

Hi Kity I've been trying to look into this for you but so far alot of the studies I've seen suggest a low birth weight as a complication of hypothyroidism during preganancy.

[Karenk13 in reply to Karenk13]

academic.oup.com/jcem/artic...

This is from the Clinical Journal of Endocrinology

[Kitty1watson in reply to Karenk13]

Thank you for taking the time to have a look for me. I have a lot of medical studies linking high birth weight to hypothyroidism (hyperthyroid tends to cause low birth rate). That is the starting point that I will point out to the doctors - ie that this should be perfectly well-known and not just ignored.

But I am already being "treated" with T4 and so I just wondered if there is anything about being monitored, dose increases, or about whether being less than optimally-treated (or having absorption/conversion problems) carries the same or lesser risks and what doctors should be doing during pregnancy to monitor my levels etc.

I just need to be able to present them with some clear medical information which shows that they should know to at least ask the right questions, get the right tests done (given I was told I had to pay for a T4 and T3 test) and that their disinterest in my condition is not acceptable. The information is out there, so I am frustrated to have been ignored for so long.

ncbi.nlm.nih.gov/pmc/articl...

"and hypothyroid non-Hispanic white women had higher odds of large-for-gestational-age infants."

ncbi.nlm.nih.gov/pmc/articl...

"Mean birth weight was lower in children born to mothers with a diagnosis of hyperthyroidism and higher in children born to mothers with a diagnosis of hypothyroidism"

ncbi.nlm.nih.gov/pubmed/283...

"Conclusion:

Maternal fT4 in early pregnancy was observed to be inversely associated with birth weight, with a stronger relationship in males. Male infants also had increased odds for LGA in mothers with subclinical hypothyroidism. Sexual dimorphism appears to be present in the relationship between maternal thyroid metabolism and fetal intrauterine growth, with stronger associations in male infants.

"

[Karenk13 in reply to Kitty1watson]

Hopefully you find what your looking for to help with your treatment x

[LKJ987]

Hi Kitty, Did you find articles on this subject? I found someone mention a book by Dr Barry Durant Peatfield that apparently has information on bigger babies linked to hypo mothers. I think you’re right and I’m going to read up on it as also pregnant and worried about this!

[Kitty1watson in reply to LKJ987]

Yes I already had his book which is where I first learnt about it. But doctors don't like him and I was hoping to find some other sources. I did find several studies (see above), but events overtook this and I'm only 3 weeks away from having the babies now. I've been diagnosed with gestational diabetes but thre doctors are STILL saying there's nothing to worry about re the size of the babies. I've given up trying to discuss anything with them. Good luck with everything!

[LKJ987]

Good luck it’s so frustrating when nobody listens to you! In my last pregnancy I’m convinced I was undertreated and my son was born in 99% percentile!

[Kitty1watson in reply to LKJ987]

Yes, it frustrates me so much that the experts just ignore this. I even contacted The British Thyroid people and their "medical expert" told me underactive thyroid is linked only to small babies. I sent them over three or four studies which showed the opposite and made it quite clear I was unimpressed with their advice. I just don't understand why thyroid specialists clearly undertake so little CPD and show so little interest in their own field.

[LKJ987]

Totally agree with you! The nhs specialist I’m seeing refused to even look at the print out I gave him from thyroid UK (the Lothian doc) which showed pregnancy specific reference ranges. All he cares about is TSH and we all know to pay attention to FT4 and FT3 too especially in pregnancy! Trying to find other British articles on treating thyroid during pregnancy if anyone has others! Thanks!