# Down regulation started but thyroid issues not resolved....



## SparklyT (Feb 14, 2015)

Hi ladies, hoping for a bit of advice. I've been being treated for an under active thyroid, but my first dose of thyroxine (100mcg) made me over active. My endocrinologist dropped my dose to 50mcg but the results today show my TSH is 0.02 and my Free T4 is 28.3 - so I'm still over active. He's asked me to come off thyroxine completely now. 

My IVF consultant has been aware of all of this (apart from today's results as they've only just come in) and said that I should still start my first IVF cycle and I start down regulating yesterday. But now these new results have come through I'm wondering whether I should stop down-regging. My endocrinologist is worried that if my free T4 doesn't fix itself and get below 20.0 before implantation there is an increased risk of second trimester miscarriage, which of course I want to avoid at all costs. 

Has anyone else been through this. I'm pretty gutted as I psyched myself up for this round and now I may have to stop!


----------



## Goodlife (Jan 13, 2015)

Hi there, can I ask you both a question...when and how did you get referred to an endocrinologist?  I've been TTC 17 months and TSH was10.94. My GP surgery refuses to refer me to an endocrinologist saying they won't acceot me!!??


----------



## Val74 (Jan 3, 2015)

This is an interesting thread. I've had underactive thyroid for years but am only recently seeing the importance between it and fertility. My TSH hasn't been below 5.64 since at least 2003. Even with that knowledge and knowing I was having fertility issues my dosage hasn't been altered in the last 11 years. The NHS then proceeded to waste my two gos (in my opinion) by treating me when my TSH was clearly too high. I had similar in as far as when they did increase it was to such an extent that it then went to 0.06. My GP said they prefer it to be too low than too high. Fertility Consultant has told me to now take 100mcg and it should stabilise (had increased from 75mcg to 150), treatment is proceeding anyway so hope to goodness it works!  . I have never been given T4 results, not sure if they even test in UK? I've been told they like your TSH to be under 2 when doing a cycle, didn't tell me the lower limit though.


----------



## SparklyT (Feb 14, 2015)

Goodlife said:


> Hi there, can I ask you both a question...when and how did you get referred to an endocrinologist? I've been TTC 17 months and TSH was10.94. My GP surgery refuses to refer me to an endocrinologist saying they won't acceot me!!??


My GP refuses to treat me when my TSH was at 8, so as I had BUPA from work I asked him to refer me privately. I think your GP is talking rubbish.


----------



## SparklyT (Feb 14, 2015)

Val74 said:


> This is an interesting thread. I've had underactive thyroid for years but am only recently seeing the importance between it and fertility. My TSH hasn't been below 5.64 since at least 2003. Even with that knowledge and knowing I was having fertility issues my dosage hasn't been altered in the last 11 years. The NHS then proceeded to waste my two gos (in my opinion) by treating me when my TSH was clearly too high. I had similar in as far as when they did increase it was to such an extent that it then went to 0.06. My GP said they prefer it to be too low than too high. Fertility Consultant has told me to now take 100mcg and it should stabilise (had increased from 75mcg to 150), treatment is proceeding anyway so hope to goodness it works! . I have never been given T4 results, not sure if they even test in UK? I've been told they like your TSH to be under 2 when doing a cycle, didn't tell me the lower limit though.


The TSH test is the standard thyroid test, but all my private consultants have asked for T3 and T4 when doing my bloods. I think it's a case of asking to make sure those extra tests are included.


----------



## Goodlife (Jan 13, 2015)

Thanks for reply SparklyT...I've had/am having such a battle with primary care about the implications of hypothyroid and under treated and under monitored.  I'm already having to pay for my own blood tests now as they wont follow NICE guidance for preconception.  I'm trying not to think negatively but if something goes wrong I will make the biggest fuss imaginable...although I'm sure they'd say any miscarriage would be a natural reason as they have no clue but worse when evidence is presented from research ie British Thyroid Foundation and NICE they don't accept it.  My GP is acting like an omnipotent dictator.:-(


----------



## Bumble Bus (Apr 23, 2013)

Ladies, there's a thyroid thread here if you want to take a look http://www.fertilityfriends.co.uk/forum/index.php?topic=283032.msg6027403#new

I've been seeing a reproductive endocrinologist privately and he has been overseeing my tests and dosage from the run-up to my FET and, since it was successful, every 4 weeks throughout my pregnancy. I am not interested in the opinions re my thyroid of any other doctor I am under the care of, they all have a speciality and thyroid is not it!

If anybody wants details of the person let me know. x


----------



## Goodlife (Jan 13, 2015)

Thanks Bumble Bus, it's the weirdest thing NHS thinks thyroid conditions are simply a case of "take this pill" and don't overcomplicate the issue!!  How did you go about finding a reproductive endo?  I'm in east Anglia and don't think there is anyone Thst specialist in the region?


----------



## Bumble Bus (Apr 23, 2013)

Goodlife, I actually had him recommended on here!  He works out of Harley St but I've only seen him in person once and the rest of the time he is happy to deal over email.  Let me know if you would like details.

x


----------



## Goodlife (Jan 13, 2015)

Thanks Bumble Bus, that sounds out of our buying power unfortunately but it would be really helpful to know whether going privately meant you could self-refer?  My GP won't even refer me to an endocrinologist and made a huge statement that he doesn't think our infertility will be anything to do with thyroid.  So I need to find a way to side-step him and his colleagues.


----------



## surfgirl82 (Sep 24, 2011)

I'm not sure if this is of any use but I've had thyroid issues for a few years. It isn't caused by an auto immune issue, my thyroid is damaged from taking another medication long term, so mine can present quite differently because it responds to further damage to the thyroid. Basically when it's damaged it goes over active and then underactive and then I can get it under control! I had a whole year of being over active last year and two failed cycles. Prior to that it had been borderline underactive and the nhs guideline is not to treat a tsh under 10 (I think it's 10). So I couldn't get pregnant and when it finally packed in and tsh went up to 56 they treated it. 

I saw an endocrinologist once just because of the cause of the thyroid issue but they wouldn't routinely see people with an underactive thyroid. I just manage it through the gp now. Our ivf clinic however said that we shouldn't do treatment unless my tsh was no higher than 2.5. Once it settled down and I got to this level I got pregnant. They couldn't say for sure if it was the thyroid but it's took me 4yrs to get pregnant having had no problem before, so I do think there is some link in there.

Honestly I would change gp surgery if they aren't working with you on this, it's not worth the battle. I told my gp what the clinic had said re ideal levels and we worked together on adjusting the dose etc. As I say, mine takes ages to get under control due to the cause of the thyroid probs but hopefully yours will be a bit more compliant! 
Best of luck and hope things settle down for you xx


----------

