Thyroid levels/hashimotos in pregnancy - can't get help

[CosmoC]

Some mumsnet users sent me this way, as I am worried about thyroid levels (am 34 weeks pregnant and not greatly well. GP is confounded and - to be fair - doing all he can to check in on - is sending me to haemotologist and cardiologist but I think I need an endocrinologist and I need help a) ascertaining levels in pregnancy and b) convincing him

So during a round of tests to discover why I'm feeling so crap at 34w- I have what are supposedly normal thyroid results - see below, only just within nhs range according to lab results. GP does not mention them - I see them on the print out afterwards.

I understand that - actually - these aren't great for pregnancy (read stuff on the British Thyroid UK site)...I haven't been diagnosed with hypothyroidism before pregnancy, though have always thought might have it (ie results for Tsh historically on higher range; I have classic symptoms).

I also have a reasonably high inflammatory response that the GP can see on the tests. My body is reacting very badly to something ( I think to certain foods that contain preservatives) and I can feel an almost allergic response going on - my body feels like it's fighting something and under stress.

I seem to tick boxes for Hashimoto symptoms but obviously they're quite common symptoms in pregnancy too...

These are my results.

Ts4 12.9

Tsh 3.97

I would appreciate any responses on levels or how to approach GP - nice guidelines seem to refer to women who enter pregnancy with a recognised thyroid disorder and I'm having trouble finding out whether these results are just ok for people without recognised disorders.

I'm very worried that this has been overlooked and impact it could have on the baby. I realise that this might be a bit ott but feel so crap at the moment that I can't imagine it's great..,

[shaws]

Welcome to our forum, I am not medically qualified but you will be pleased to know that by 12 weeks pregnant baby has his own thyroid hormones circulating. Others will respond when they read your post. In the meantime this may reassure you:-

The director there informed that after a certain number of weeks (I think it was 12) the baby starts working off his own thyroid anyway so your shouldnt affect your baby. It is REALLY important though to continue your meds and get your blood checked every few months throughout your pregnancy just in case your dosage needs to be adjusted.

babycenter.com/400_4-weeks-...

When you have blood tests for your thyroid hormones it should always be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between your last dose and the test and take afterwards.

When you post your results, always put the ranges as labs differ and it makes it easier for members to respond.

I think you need an increase as your ~TSH is nearly 4 and I think 2 is preferable for pregnancy. If you didn't have the earliest appointment ask for a new test and follow procedure above. You need TSH, T4, T3, Free t4, Free T3 and thyroid antibodies. B12, Vit D, iron, ferritin and folate if you haven't had these checked.

If GP or lab wont do all of the thyroid ones you can have them by one of our recommended labs and I'll give you a link. It is pin-prick home blood tests.

thyroiduk.org.uk/tuk/guidel...

thyroiduk.org.uk/tuk/testin...

You have to be well-hydrated when doing home tests so make sure you are. a few days before as it makes it easier to draw blood and also have warm hands/arms.

[CosmoC in reply to shaws]

Thank you for the reply and welcome! The reassurance was v kind. I just hope I wasn't at this range in 1st trimester...I will post the results asap with ranges etc.

As I said I have not been diagnosed with any thyroid disorder previous to pregnancy so I am not on medication

But yes these were first thing after 12 hours fasting

My b12 was well within range, I had iron deficiency but that is now ok and ferritin levels are now in range. Folate was on lower end at 28week tests but fine. I have enlarged blood cells (and other oddness that the gp is sending me to haemotologist because of)....

[silverfox7]

Your body tends to put the baby first when pregnant so another reason you aren't feeling your best. If you haven't already done so I think you need to talk to your midwife and the medics as well. They may be in a better position to advise you.

Congratulations on your little one!

[CosmoC]

Serum free T4 12.9 pmol/L (12-22 pmol/L)

Serum TSH 3.97 miu/L (0.27-4.20 miu/L)

Ethrocyte sedimentation rate 51mm/h. (1-12 mm/h)

Serum B12 457 ng/L (197-771)

Folate (recent test unsuitable for analysis due to haemolysis) but august 16 - 5.4 gu/l (3.1-20.5)

Serum iron level 17.7umol/L (5.8-34.5)

Serum transferrin 3.65 (3.02-3.36g/L)

Ferritin 29.8 (13-150 ugL)

[shaws in reply to CosmoC]

FT4 is bottom of range, should be nearer the top.

TSH is too high should be around 2 for pregnancy. If not pregnant 1 or below is recommended.

B12 at the top - nearer 1,000 is now recommended and supplement with B12 methylcobalamin sublingual tablets.

SeasideSusie will respond re your blood test results.

[Treepie in reply to shaws]

Shaws ,should "1 or below" only apply if on levo?

[shaws in reply to Treepie]

I would say 'yes' as the blood tests were introduced along with levothyroxine - T4 only.

Before that we were given NDT so as that contains T4, T3, T2, T1 and calcitonin blood tests cannot be identical as being on levo alone. Also if we take T3 only the t4 will be low as we aren't adding it in.

My blood test results on T3 only are below 1 but not suppressed as I following the 24 hour/fasting and GP is happy. I am happy as I feel fine

Also we can allow for small variations in results as long as we feel good.

[Treepie in reply to shaws]

Shaws ,Sorry if I was not clear,I was really referring to your reply to CosmoC "1 if not pregnant" .CosmoC is not taking Levo so would 1 be applicable for TSH if not pregnant and not on T4 ?

[CosmoC in reply to Treepie]

This is what's confusing me, as all the guidelines for thyroid refer to people who have identified conditions and are on meds already...

[CosmoC in reply to CosmoC]

Thyroid guidelines for pregnancy that should read!

[SeasideSusie Remembering in reply to CosmoC]

CosmoC

Ethrocyte sedimentation rate 51mm/h. (1-12 mm/h)

The ESR is increased in infection, inflammation, pregnancy, anemia, and some autoimmune disorders. It's possible that yours is due to our pregnancy.

**

Serum B12 457 ng/L (197-771) Folate (recent test unsuitable for analysis due to haemolysis) but august 16 - 5.4 gu/l (3.1-20.5)

An extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

You may want to increase yours and sublingual methylcobalamin lozenges are what's needed to supplement B12 yourself along with a good B Complex to balance all the B vitamins.

A B complex containing 400mcg methylfolate will help raise your folate level. Your level in August 2016 was far too low, it should be at least half way through it's range.

**

Ferritin 29.8 (13-150 ugL)

This is way to low. Ferritin needs to be a least 70 for thyroid hormone to work, and I've seen it said for females it should be 100-130nmol/L. If your GP wont prescribe iron tablets then you might want to buy your own. Each one should be taken with 1000mg Vitamin C to aid absorption and help prevent constipaton. Always take iron 4 hours away from thyroid meds and two hours away from other medication and supplements as it will affect absorption. If you buy your own you need to recheck your level after 3 months, if your GP wont do it then you'll need to do it privately and Medichecks to a fingerprick test for iron status for £39 I think.

[CosmoC in reply to SeasideSusie]

thank you seaside susie - I cannot express how much I appreciate your support and everyone's here - this is so helpful.

GP gave me iron tablets when my levels were very low a few weeks ago but then said that levels were fine so didn't need to take them. I still have the tablets and I will resume.

Unfortunately I find it tough to find a supplement I can take for B vitamins. During this pregnancy I seem to have developed a severe reaction to sulfites and sodium carbonate (!?!) - leading to vomiting, weird low blood pressure episodes and near fainting, low pulse that feels like it's racing (too strong). It's pretty scary when it happens and I spend the next 24 hours feeling like I'm totally hungover. This is what's ruining my life at the moment - some days I cannot move from the sofa but elimination and a food diary has helped reduce the amount of episodes per week!

All the b vitamins I've taken (including liquid) seem to cause this reaction too - most have sodium carbonate in or something with sulfites added (corn starch etc)... and don't get me started on how much rubbish is put into food that you only realise when something like this happens (tinned pulses used to be a staple and a great folate resource but these often cause a reaction too).

[SeasideSusie Remembering in reply to CosmoC]

CosmoC If you haven't already done so, then have a look at Metabolics B Complex, it's the one I use. They say

Metabolics B complex contains no fillers, enhancing absorption and only contains the B vitamins in the most bioavailable form.

metabolics.com/b-complex-po...

Also in liquid form (I tried it and wasn't keen on the taste so went back to the capsules) metabolics.com/b-complex-li...

I bought my capsules in July for £22.50. I've just noticed a massive price hike on both Metabolics website and Amazon (although it's Metabolics who sell through Amazon). I'm going to email them and ask why the massive price increase.

[CosmoC in reply to SeasideSusie]

Gosh - they are expensive! The capsules might do - liquid had Citric acid (often contains sulfites) and potassium sorbate that oftseem to cause issues for me. But they are v costly!!

[SeasideSusie Remembering in reply to CosmoC]

I emailed them yesterday to query the price rise since my last purchase in July when I paid £22.50. They haven't got back to me. I will probably be looking for a new brand in a few weeks' time!

Health Leads supplements don't have additives or fillers but I don't like the amounts of the different vitamins, they seem quite high compared to Metabolics, and they do give warnings about their levels of B3 and B6.

[CosmoC]

Thanks silver fox for the congrats ...

This is pretty extreme to be honest - And as I've been pregnant before I believe this is beyond average pregnancy being run down etc. It's severely debilitating and has stopped me from working at all so has massively affected my standard of living. It's beyond not feeling my best.

Midwives have said that because I'm now not anaemic that they wouldn't check for anything else - hence me wanting to see a consultant.

[Clutter]

CosmoC,

There are trimester specific ranges. Your GP should start you on Levothyroxine to raise your FT4 and reduce your TSH to <3.5 and if GP is unsure s/he should consult an endocrinologist. The foetus will have developed its own thyroid gland by 12 weeks so there shouldn't be any problem with the baby's development.

Management of primary hypothyroidism: statement by the British Thyroid Association Executive Committee

13. The serum TSH reference range in pregnancy is 0·4–2·5 mU/l in the first trimester and 0·4–3·0 mU/l in the second and third trimesters or should be based on the trimester-specific reference range for the population if available. These reference ranges should be achieved where possible with appropriate doses of L-T4 preconception and most importantly in the first trimester (1/++0). L-T4/L-T3 combination therapy is not recommended in pregnancy (1/+00).

onlinelibrary.wiley.com/doi...

[CosmoC in reply to Clutter]

Thank you clutter! I really appreciate the time you've taken to reply. I am seeing the gp on Thursday and will go armed with the info.

[CosmoC in reply to CosmoC]

Hi Clutter. Is it normal to be told that you're in their hospital range for pregnancy and therefore there is nothing wrong? To be fair, it MAY not be my thyroid that's causing or aggravating my feelings of illness (and yes, I have been pregnant before - and I know that the body is under stress) but I need to investigate each pathway I can find, particularly when I have symptoms that seem to tIck the boxes.

Feel so despondent. This is NOT normal - if I was in a full time job (rather than freelance and in control of my work load) I'd probably be sacked by now because this is seriously affecting my life. I'm going to be seen by obstetric consultant but not for 3-4 weeks. I will not be able to function with a newborn if I continue feeling like this. I hate being told this is 'just one of those things' - which to me is code for they don't want to do anything beyond basic tests.

I'm so sorry to rant, just feel utterly hopeless. GP is happy to refer to endocrinologist, which is v good, but I won't get an appointment until well after the baby is born.