Any thyroid problem mums? Need your help!

[flybynight]

I?m posting this on behalf of my poor wee sister who is 12 weeks in her 1st pregnancy and is feeling a little bit mishandled by the NHS. I?m really hoping one of you Mumsnetters will be able to shed some light for her.

She has her thyroid removed 5 yrs ago because it was cancerous and now takes thyroxine and liothyronine/triiodothyonine. She is in the care ? I?m using that term loosely ? of an endocrinologist with an obstetric specialty. Her hormone levels have to remain pretty constant or there is a chance of her thyroid regrowing, which would not be so good.

She had her first meeting with the doctor yesterday (at Edinburgh Royal Infirmary) and it didn?t go well. Them seem intent on treating her for Graves disease, which she does not have and she has to have a lot of TRAb scans to monitor the situation. When she asked for explanations she was told to look on Wikipedia (she didn?t push it because she was trying not to cry). She (and I) are worried that she is going to end up heavily medicalised during pregnancy and possibly delivery for the convenience of medical staff.

Has anyone else been in this situation, or know anyone who has? We?re trying to work out if the Graves disease business is standard for all thyroid mums or if it is a mistake. I know this is pretty specialised ? I?ll post it on health too. She feels pretty unhappy about it at the moment. And I want her to have a nice straightforward pregnancy! Lord knows, first time pregnancy is scary enough.

I have an underactive thyroid and take thyroxine. I know that the thyroid function has to be closely monitored in pregnancy and thyroxine dose adjusted accordingly. Mine was never overactive so I don't have knowledge in this area but hope someone comes along soon who does. I can understand how anxious your sister is.........as you say, pregnancy itself is scary enough.

Sorry - your sister had Ca of the thyroid so not overactive.....no knowledge in this area either.

There should be a midwife who specialises in endocrine problems attached to the hospital - its often the diabetic midwife . She can probably come and see your sister at home for a 1 to 1 consultation and she can hopefully get some reassurance .

Unfortunately you sisters pregnancy IS high risk and while that doesn`t excuse the attitude of the staff it means they will be doing everything possible to ensure a healthy mum and baby . She will need close monitoring and regular checks .

HTH

You are spot on about the risks of her pregnancy, fakeblondie. I think she just needs some reassurance that her treatment is relevant, and being told to cosult Wikipedia doesn't do that! And the endocrine midwives said they only do diabetic mums, unfortunately. I suppose there are thousands of endocrine conditions and they can't be trained in all of them .

Your sister is lucky to have you to look out for her like this

I've got an underactive thyroid and have therefore been given consultant-led care during this pregnancy (currently 27 weeks). Your sister should expect to be given thyroid function tests at least every trimester and to be closely monitored by the consultant and midwives. NHS clinical guidance states that TSH should be between 0.4-2.0 during pregnancy but this may be different in your sister's case. But she may have to have the scans you mention on a more frequent basis to keep an eye on things.

When's your sister's next appointment due with the consultant? Can she take along a copy of any notes she has relating to her actual condition (perhaps she can get copies of these from her GP?) and say to the consultant "I'm concerned that at the first appointment the plan was to treat me for Graves disease, which is not what I've got, and following that first appointment I felt quite distressed. Here are my notes. Can you look through them and can we then discuss the care plan for this pregnancy? I'd welcome the chance to discuss what medication I'll need to take and would be grateful if you could explain the reasons behind the tablets etc, to help me cope with my condition".

Fakeblondie also makes a good suggestion which may help to reassure your sister - but she will need to bite the bullet and talk through her concerns with the consultant who's leading her care.

I would also recommend she reads Pat Thomas's book Your Birth Rights (I borrowed it from my local library and it's very informative about your options during antenatal care as well as the birth).

Good luck and I hope your sister has a happy and healthy first pregnancy

Hi flybynight, Blondieminx gave good advice - just like to add, I opted out of consultant led care as I trust my GP, and I hate waiting at hospoitals - I am having monthly thyroid tests, TSH needs to be kept between 0.4 and 2.

If she has a GP she trusts might be easier to bypass the hospital, get blood test done monthly at GP followed by appointment a week later (can do all pregnancy checks too like blood pressure, urine etc) and also discuss thyroid results. this worked well for me in my last pregnancy.

in my first pregnancy dose had to adjusted twice as TSH soared to 14 by 8 weeks (although it was normal at 5 weeks)

Hi Flybynight, your sister is lucky having you looking out for her. I was told by a Endocrinologist in Edinburgh, that there was some kind of hormone clinic (wish I could rem the full name) that I could be referred to if I got pregnant again, which would closely monitor my progress. I wonder is that another option? God I hope I don't get the doctor your sister has had to put up with. Referring someone to the internet might be fine for extra info, but not INSTEAD of giving her the right information. I think she needs to make sure she sees someone else next time. A friend of mine (we both have u/a thyroid) tells me of a lovely, supportive endo at ERI, and also one who (metaphorically) shoves you out the door. Do hope you get some answers.

Thank you very much all - this has given much comfort to my flighty sister. She has calmed down a lot. And I concur with your opinion that I am a great human being . That was what you said, wasn't it?