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I am really cross - hypothyroidism, pregnancy, useless GPs, help!

(11 Posts)
spilttheteaagain Thu 19-Nov-15 19:00:32

I have Hashimotos autoimmune thyroid disease, currently on 100mcg/day thyroxine. TSH was 1.6 in May this year so all seemed good.

We've had a pill failure and unplanned pregnancy. I got a private scan the day after testing positive to date the pregnancy - 6 weeks pg (this was 2 weeks ago).

We spent a week considering whether to keep the pregnancy or not, but have now made the decision to go ahead, so last Friday I trundled along to the GP to say I was 7 weeks pregnant but have autoimmune underactive thyroid so need some urgent attention to get the thyroxine levels right.

Now, there is a plethora of information on the web - NICE guidelines, British Thyroid Foundation, Thyroid.org, British Thyroid Association, various endocrinology journals which ALL CONCUR that the correct procedure is:

-To immediately increase the thyroxine by 25-50mcg/day
-Test TSH and FT4
-Refer to specialist
-Retest TSH & FT4 every 4 weeks in 1st trimester and then in 2nd & 3rd trimesters to keep TSH under 2, and FT4 in the upper half of the reference range.

It is frequently emphasised that in the 1st trimester it is crucial to keep the thyroid in check, and failure to do so is associated with increased fetal loss and problems in the neurological development of the baby.

So WHY did the GP simply authorise the blood test (but refused to actually do it, so I booked the next available bloods appointment which was then Tuesday this week), but say to see the midwife and get a referral to consultant? Saw midwife this week and told I'm not going to get to see a consultant this trimester, should take blood results back to GP (who doesn't want to deal with them due to the pregnancy, argh).

Finally managed to get my blood results today (so now 8 weeks, wasted a week since first saw GP!) and they are:
TSH 5.7 (0.5-5.5) (ridiculously high ref range here, everywhere else cuts off at 4.5, we are v out of date)
FT4 15.1 (10-24.5)

AND A GP HAS SEEN THESE AND SAID "SATISFACTORY, NO ACTION NEEDED" !! I am spitting mad. TSH of 5.7 is not ok normally, let alone in fucking pregnancy! I am asleep all the time and feel like shit and so so cold too sad and really worried about the pregnancy.

Will be booking an urgent appointment tomorrow, but what can I do??? I have done thyroid battle repeatedly, they are utterly useless at dealing with it and really reticent to prescribe/increase dosage. If they don't want to what can I do? Is there some specific NHS GP instruction sheet I can wave???

Thanks if you got this far!

Idefix Thu 19-Nov-15 20:07:04

Find the nice guidelines - these are what gps work from in nhs. Unfortunately the reference ranges are just what they are iyswim and there is not much point in arguing ŵith gp about how in the USA for example have a much wider range for thyroid levels. What is seen as sub-clinical levels in the UK will get you a diagnosis in the USA
Is there another gp in the practice? Can you see them? Ask gp for an urgentreferral to specialist if midwife won't do it.
Print off any guidelines that you can find on nhs website.
Do you have a nurse practitioner at your practice? Sometimes they can be more knowledgeable as they often specialise in cd.
Congratulations by the way flowers

Pleasemrstweedie Thu 19-Nov-15 20:24:12

cks.nice.org.uk/hypothyroidism#!scenario:3

Iggi999 Thu 19-Nov-15 20:27:42

Start taking more tablets yourself, I really would. In my last pg I got a 25 increase straight away and then referred to an immune clinic (sorry can't remember the name) at local hospital and they monitored levels for rest of pg - I remember the doctor I saw phoning me after the birth to discuss my new dosage, it was all taken very seriously.

spilttheteaagain Thu 19-Nov-15 20:36:41

The trouble with that Iggi is my tablets are 100mcg, so I'd have to cut them up but that doesn't feel a very safe way of going about it!

That link is perfect thanks MrsTweedie. I also found this nice little patient leaflet here which I shall print too as it's so concise.

Idefix I've tried a number of the GPs over the last five years and not yet found a good thyroid one. We do have a lovely nurse practitioner though, might be worth a shot. To be honest tomorrow I shall just have to see whoever is on as emergency doctor and hope for the best. As it happens DH has a day off tomorrow so I am going to take him with me as he is less likely to take no for an answer than I am!

Fingers crossed. Once I get a hospital appointment, which will probably be at the 12 week scan, I shall ask the consultant to write my GP instructions on monitoring and levels for pregnancy!

Clarella Thu 19-Nov-15 21:20:58

My experience was similarly shocking; but I had heard this programme and just hammered the gps. Next time I'd raise it myself.

It is appalling that this still happens; a friend who was monitored during the first pregnancy wasn't in the second.

To reassure you; by 13 weeks my tsh was 9 despite two raises (possibly 3) thanks to a faulty batch of thyroxine at the time. My nearly 3 year old is fine (as far as I can tell!)

It raises very quickly in the first trimester. I went from 125/150 to 225 in the end. However I think in reality it only needed to be 200 due to the faulty stuff.

I just kept phoning the GP, asking for tests, but I actually think I made such a fuss just before I got pregnant due to the radio prog I think they did some checking.

The obs I finally saw was spectacularly un helpful, put me up to the 225 (I'd only found out about the faulty stuff the week before). A friend in a similar situation got more joy from getting the GP to contact and endocrinologist.

By around 25 weeks the baby has its own thyroid so you might reduce to around pre preg dose towards the end. Do get regular checks afterwards though; I didn't and became very ill.

I personally think there should be a national campaign started; ime midwives at booking don't know about thyroid but it needs to be adjusted on confirmation of pregnancy. A friends mother who is a GP didn't know about it.

ink{http://www.bbc.co.uk/programmes/b01cjwvm\www.bbc.co.uk/programmes/b01cjwv]]m}

Iggi999 Thu 19-Nov-15 21:29:47

I thought it was during the first trimester that it was most important.
I had rmcs so did everything I could to avoid potential problems, the doctors didn't really stand in my way and one of them knew exactly what to do.
You could take one extra tablet every four days if you can't split them. But ideally, getting an appointment tomorrow and an official dose increase is obviously a better option!

Clarella Thu 19-Nov-15 21:33:44

ink{http://www.thyroiduk.org.uk/tuk/guidelines/Lothian%20Guidance%20for%20Diagnosis%20and%20Management%20of%20thyroid%20function%20in%20pregnancy.pdf]]\www.thyroiduk.org.uk/tuk/guidelines/Lothian%20Guidance%20for%20Diagnosis%20and%20Management%20of%20thyroid%20function%20in%20pregnancy.pd]]f]]}

I found this elsewhere but it's linked on thyroiduk too. They are guidelines set out in Lothian and include the endo Dr Toft, who writes the BMA book on thyroid disorders.

I had mine tested just before pregnancy, at pregnancy confirmation, (5 weeks) at about 7-8 weeks (wasn't great) and at about 10-11 weeks (even worse then).

Clarella Thu 19-Nov-15 21:38:24

Reading that link again; my son did have iugr. He was born off the scale at 40 weeks. He did catch up and settled on the 25 th though.

spilttheteaagain Fri 20-Nov-15 12:40:37

Thanks for the links, I read/listened to those last night. The radio programme really resonated when the hospital folk were saying that they had realised no one was looking after the women in their first trimester - they hadn't yet been taken on by the consultants and the GPs sort of parked the issue as pregnant people are under maternity services etc... so we are all falling through the cracks and not being adequately thyroxine replaced until the 2nd trimester.

Anyway, I went in to the doctors today armed with printouts and determined and have got dose increased from 100 to 150mcg grin and repeat bloods booked for 3 weeks time to check if that is about right. Phew. So incredibly relieved.

Clarella I'm sorry you struggled too and that is pretty shocking about the faulty drugs! Glad your son has caught up now, iugr sounds very scary.

Thank you all!

Clarella Fri 20-Nov-15 18:24:04

That radio programme was nearly 4 years ago; shame nothing has changed.

Glad you're being proactive! smile

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