hyperthyroidism, endocrinologist very unhelpful… frustrated

posted 3 years ago in TTC
Post # 2
510 posts
Busy bee
  • Wedding: April 2018

oh boy.  been there done that.  i think an endo is the only ‘ologist’ i refuse to get (i have many others). i see my primary to manage my thyroid issues – they can do everything and refer me if things get too complicated. i don’t know why you are being told to stop ttc – your body actually helps you out greatly when preggo – yes, your thyroid controls metabolism and immunity, but that in no way affects pregnanacy (carried 3 babies all to term with hypo).

the meds you will be taking are strictly to control the levels of TSH put out by your thyroid – the meds are the same if you have hypo or hyper just the dosages are different.

Adjusting your diet can help with syptomatic issues but you shouldn’t have to give up dairy, at least not altogether, maybe cut back.

I would talk more to your primary about your concerns and what they can do for you.  Maybe create a management plan for your condition and go from there.

Post # 3
5 posts
  • Wedding: September 2015

What expectations did you have for your first appointment? 

Although I agree that “vague” explanations about the medication that you were prescribed are not helpful, it seems that the doctor is trying to regulate your thyroid hormone levels, which does take time. Usually 4-6 weeks, instead of 2 months. 

Regarding holding off on the TTC, the reason is that *high or *low thyroid hormone levels may have bad consequences on pregnancy. Hence the waiting to regulate the levels. 

It is not true that meds used in hypo- and hyper- thyroidism are same. Very different. Very different effects on pregnancy.  

Please see a specialist for an educated advice. 

Post # 4
523 posts
Busy bee

bippidyboppidyboo :  The issue with getting pregnant with a hyperthyroid is that it causes miscarriage. The HCG in pregnancy binds to the TSH and causes hyperthyroid issues to get worse. If you look at TSH lab thresholds, they are lower in pregnancy because many people become hyperthyroid in the first trimester (compared to their baseline). It’s expected. But if someone is hyperthyroid and becomes pregnant 1) they can’t image/treat/stabilize the thyroid as well (you can’t have an iodine study for example) 2) she has a high risk of miscarriage without treatment

Post # 5
2896 posts
Sugar bee
  • Wedding: July 2011

My mum has an overactive thyroid and was diagnosed in her 50s after blacking out at work. Obviously that meant there were no TTC concerns for her. 

Howver, the treatment of thyroid conditions are a lot of trial and error. You need to try various doses  to see what works for you and the continue to monitor them. My mum has had her thyroid removed now and do has to take medication everyday and that dose has to be reviewed regularly. 

You should get used to regular blood tests as they’ll need to be done each visit to ensure it’s under control. I’m afraid it’s not a quick fix thing where a doctor can wave a magic wand and make it better. 

Post # 6
616 posts
Busy bee
  • Wedding: July 2017

Yes, I totally understand. I had a terrible experience when I was diagnosed as hypothyroid. First, the doctor I saw suggested my stoamchaches and lethargy were because “I was single so I didn’t have someone to talk to at night” (not kidding!!)

When I finally got diagnosed he at first insisted I was hyperthyroid for awhile. I had to push a lot for further testing, which ( no surprise ) showed I was actually hypothyroid like I had said.

I went to the endo, who did a full hormone test. His exact words, “Well, the test came out that you’re hypothyroid. But a lot of these numbers are weird so we don’t know.( Pause ), “oh yeah and it looks like you’re going through premature menopause …okay, bye”

I was 30 years old and single and I cried like every day, thinking I’d never have kids and I’d have to tell any future partners I already had menopause. I’m sure it would have been a deal breaker for some.

finally I went to see my moms GP. Basically she did another test that showed I wasn’t going through menopause. 7 years later I’m still getting periods .

Soooo I had a pretty bad experience getting diagnosed too.

Post # 7
204 posts
Helper bee

bippidyboppidyboo :  this advice is pretty incorrect. Thyroid issues can impact pregnant a lot and absolutely should be stabilized before getting pregnant for the greatest chance of success. That’s not to say that someone with thyroid issues can’t carry to term, many do, but both hypo and hyper increase chances of miscarriage and fetal issues. As others have said, hcg binds to TSH and also T3 controls progesterone levels. 

Also, treatment for each is different, and the medication is not the same. 

OP, I hope you can find a doc who will work with you to get this corrected!

Post # 8
107 posts
Blushing bee
  • Wedding: October 2013

Ugh, I have had similar struggles with seeing an endo for my hypothyroidism.  I finally found an amazing doc (not an endo – just an regular doctor who specializes in thyroid issues), and she’s helped me a lot.  She’s managed me well throughout my current pregnancy (36 weeks now), which has been really helpful, especially after I had a missed miscarriage that may well have been caused by poorly managed thyroid issues.  I do agree that waiting to TTC until you’re managed well is important; it’s not worth a loss.  Check out the Thyroid Issues and Concerns board on Babycenter.  It’s wonderful; you’ll get a response within a day if you post, and they can help you find a good thyroid doc in your area (they recommended mine, and I’m so grateful).  The moderators are all very educated on thyroid issues and have thyroid issues themselves.  Out of curiosity, what blood work have you had done?  If it’s just TSH, that’s not enough to see the full picture; you’ll need to have free T3 and free T4 levels run to get a good sense of how your thyroid is really functioning (for example, my TSH right now makes me look hyper, but I’m not at all – my free T’s show that I’m in an ideal range with my current medication).  Good luck – I know thyroid issues are so frustrating when TTC!

Leave a comment

Find Amazing Vendors