First appointment with endo - your tips?

[Molliemoo1]

Hi all

My background:

- I've suffered 2 miscarriages since November 2015, both at 6+5 weeks.

- I have had my thyroid function tested as my mom has Hashimoto’s disease.

- My results are as follows :

Serum TSH 3.4 (normal range 0.3 - 4.2)

Serum free T3 4.6 (normal range 4 - 6.8)

Tpoab 339 (normal range 0 - 34)

I've booked an appointment to see an endo privately next week. The "ideal" outcome from this appointment would be a trial of thyroxine to try and get my TSH under 2 for pregnancy as per the NICE guidelines. Do you have any tips for how I should prepare for this consultation?

I was thinking of preparing the following:

Printouts of results thyroid test results (TSH, T3 & antibodies)

Details of family history

Dates of miscarriages

List of hypo symptoms that I have

NICE guidelines on pregnancy printout

British Thyroid Foundation guidelines on pregnancy printout out

Is there anything else you would recommend?

thanks

[Hidden]

maybe take some of the research evidence... u sound v thorough though.

[Hidden]

Unless I am wrong the nice guidelines refer to sub clinical hypo not your position, which is euthyroid with autoantibodies in their eyes, wrong clearly, but that is what endo will think. I expect you have already searched for euthyroid with autoantibodies pre conception/pregnancy/miscarriage etc etc, but there is a lot out there, on both sides obviously ifbyou haven't.

[Clutter in reply to Hidden]

Aspmama, NICE and BTA recommend TSH of women planning conception and pregnant should be in the low normal range 0.4-2.0 as higher TSH makes conception difficult and increases the risk of miscarriage.

[Hidden in reply to Clutter]

That's fantastic - for "euthyroid" too, even though they don't screen.. makes no sense. Will have a harder search for that info, couldn't find it. Thanks so much Clutter.

[Hidden in reply to Hidden]

Found the bit of the BTA doc in case of use to others.

"When (euthyroid with antibodies) individuals are identified, prenatal measurement

of serum TSH is recommended. If it is above 2.5

mIU/liter, the test should be confirmed by repeat assay... the committee believes it is appropriate to give

low-dose T4 treatment to bring TSH below 2.5 mIU/liter.

This treatment can be discontinued if the woman does not

become pregnant or postpartum.

Universal screening for the presence of anti-TPO

antibodies either before or during pregnancy is not recommended.

However, women with elevated anti-TPO antibodies

are at increased risk for miscarriage, preterm

delivery, progression of hypothyroidism, and PPT.

such women should be screened

for serum TSH (before preg. and during.)

[Molliemoo1 in reply to Hidden]

Thanks aspmama, I've struggled to find any reference to the guidelines for euthyroid women so this will be a big help to me, thanks. Xx

[Molliemoo1 in reply to Hidden]

Could you share the link please?

[Hidden in reply to Hidden]

That's great, please share the link! Are GP's obliged to follow this. If so, I would like to print these guidelines and take it to the GP yet again. I will not give up.

[Hidden in reply to Hidden]

btf-thyroid.org/professiona... I think this is the link it was posted on my thread. But it's hard to find that extract. Could you point us in the right direction please Aspmama. Which link did you click on?

[Hidden in reply to Hidden]

management of thyroid dysfunction in pregnancy, then you have to wade through it. It's like they don't want us to know..

and how can they agree that autoimmunity has a string of dire consequences and not screen?

[Hidden in reply to Hidden]

It,s from the endocrine society guidelines posted on that bta page. the endocrine society is the leading international society and the bta must have posted them with approval, but it is not clear to me whether they have force on uk drs.

Clutter is practically perfect, so she may have better refs. I can't find the nice guidelines on this either, which again she may have, i can only find the ones which apply to diagnosed sub clinical hypothyroids.

No wonder gps are confused..

[Molliemoo1 in reply to Hidden]

Please could you send a link to the bta page that you found the endo society link on please?

[Hidden in reply to Clutter]

Clutter are GPs obliged to follow BTA guidelines just like the NICE guidelines?

[Clutter in reply to Hidden]

Orangepie, yes, and no. There may be times when treatment outside of guidelines may be warranted on an individual patient basis. Failure to treat according to guidelines exposes the GP to sanctions.

[Molliemoo1 in reply to Clutter]

Clutter, how would you respond to gp if you were me and gp says that the NICE guidelines only apply to someone who already has a diagnosis? X

[Clutter in reply to Molliemoo1]

Molliemoo1, I'd change GP. Hopefully the endo you'll be seeing will put your GP right.

[Molliemoo1 in reply to Clutter]

Okay thanks, will let you know how it goes

[Clutter]

I think you've covered the bases, Molliemoo1. Good luck!

[Josiesmum]

Very sorry to hear of your miscarriages. Apparently your body needs at least 3 months to recover before your next pregnancy. Ask your GP to check iron, ferritin, folate, B12 and Vit D. I've also read somewhere that iodine needs to be checked but sorry, not sure where I read that. Good luck.

[Hidden in reply to Josiesmum]

iodine is discussed in the document above but i can't see guidance on being pregnant with antibodies and taking iodine. It's clearly essential to the babe but... could it increase the mothers hypo during pregnancy?

[Josiesmum in reply to Hidden]

Definitely something to raise with the endo as iodine is essential for the baby's brain development, but not something you want to be taking without medical supervision.

I know Izabella Wentz says that any iodine supplementation needs to be balanced with double that quantity of selenium. Again, we are amateurs so please discuss this with Endo. Good luck.

[Molliemoo1]

Feeling down. Just been to gp to ask for referral letter to private endo. She's agreed but also told me that she's spoken to an endo about me and that their feedback was that my tsh is fine for pregnancy and that elevated antibodies are doesn't mean I've got a thyroid disorder. She told me that I shouldn't wait much longer to ttc again and that I might be wasting my money, I think she just thinks I'm Barking up the wrong alley and trying to find a problem that's not there.

[Molliemoo1]

Oops think I just blended two phrases then.. Barking up the wrong tree and up a blind alley! That made me smile at least

[Hidden]

The endo on the phone sounds pretty useless. The European Guidelines on thyroid in pregnancy decide to take no stance on euthyroid with antibodies, but they do say this.

"A prospective, randomized trial of 984 unselected

women with first trimester TSH of 0.3–4.2 mU/l, admittedly

not subclinically hypothyroid, [NOTE THAT...] demonstrated that

TPOAb+ patients treated with levothyroxine had a miscarriage

rate lower than untreated ones (3.5 vs. 13.8%),

and similar to that of TPOAb– ones (2.4%) [86] . A significant

increase in preterm deliveries in TPOAb+ women

was also reduced in TPOAb+ patients treated with levothyroxine

[86] . As patients with thyroid antibodies are

more likely to develop SCH during gestation, this study is

relevant to a possible therapy of SCH. A randomized control

trial has shown that levothyroxine treatment decreased

the occurrence of adverse events in the mother

and fetus in women who were TPOAb+ and who had a

circulating baseline TSH level >2.5 mU/l during the first

trimester of pregnancy [69] . A recent prospective study

from Belgium found the same reduction in miscarriage

rate when treating TPOAb+ women with TSH >1 mU/l

with 50 μg of levothyroxine [87] ."

[Hidden in reply to Hidden]

That's from the 2014 European Thyroid Association

Guidelines for the Management of Subclinical

Hypothyroidism in Pregnancy and in Children

[Molliemoo1 in reply to Hidden]

Thanks. I'll try printing that off for the private endo.

I feel like the appointment is going to be a waste of time and money now though.

Whether or not I think this could have an impact on my fertility, I don't feel like I can convince anyone of this.

I'm starting to feel like I'm overreacting and trying to find a problem that isn't there (or at least a problem that's not anything to do with my thyroid).

Is my doctor right.. Do thyroid antibodies not actually mean I have Hashimoto’s? Even though my mom has it?

[Hidden]

Well my understanding is that you have Hashi's, you just don't officially have hypothyroidism because your TSH isn't yet as high as the guidelines say it should be.

I don't think you should doubt yourself, read the evidence, consider what has happened to you, and remember that the medics tend to say "there;s no evidence" as though a theory has been disproved, rather than the truth is that they haven't done enough studies.

I think your FT4 needs testing in case you have isolated hypothyroxiaemia, in which case there is another shed load of Googling to do.

medscape.com/viewarticle/81...

You can always self treat if the endo turns out to be an unfeeling numpty, and you can self test.

[Molliemoo1 in reply to Hidden]

Thanks

Interestingly, on the BTF website it says:

"In pregnancy the serum TSH reference range is different from the general population and should ideally be based on reference ranges derived from healthy pregnant women in the same population. Where such pregnancy reference ranges are unavailable a TSH range of 0.4–2.5 mU/ l in the first trimester and 0.4–3.0 mU/l in the second and third trimesters can be used."

This is without reference to a diagnosis of subclinical or overt hypothyroidism diagnosis and simply refers to "pregnant women".

btf-thyroid.org/information...

Think I'm going to have to write a full blown essay for the endo next week. I guess this may piss him off so will let him tell me what he thinks first and then go in with the evidence!

[Hidden in reply to Molliemoo1]

yeah. You're seeing a private endo, he's likely to be more sympathetic I think, and I think if you ask nicely and point to the Endocrine Soc guidelines and the European research refs, and say would he consider a low dose of levo awfully nicely because you're worried about the additional risks you have, and the risks in pregnancy, there's a good chance of agreement.

You could also ask him to write a letter to the GP emphasising the importance of testing your thyroid in pregnancy, especially in the early weeks.. the GP prob won't oversee your pregnancy care, but you could then wave it at whoever does.

I think also an iodine test might be useful if you haven't already had one.

[Molliemoo1]

I thanks. Fingers crossed!! Xx

[Molliemoo1]

Hi all.. An update...

The endo recommended a trial of thyroxine although stated that the recommendation was not strictly evidence based. He wrote to my GP to make this recommendation.

GP has said she will not prescribe thyroxine and said she wouldn't test my tsh until I'm 8 weeks pregnant, assuming I conceive.

What would you do? Should I ask the private consultant for a prescription?