More waiting after appointment with Endocrinologist

[Kat_15]

Hi fellow IVF warriors 💪🌈🍍

I had an appointment this morning with an endocrinologist on the NHS to try to get to the bottom of my overactive thyroid since our failed embryo transfer in July/August this year. I previously had an under active thyroid.

She was really nice and thorough. She said she wanted me to have two scans to check my thyroid, repeat blood tests and then for me to see her again in six weeks. She asked for me to come off DHEA as it is a steroid so could be masking issues in my blood test results.

Glad they are going to look into all thoroughly but absolutely gutted there will be more waiting as it’s probably likely we won’t start treatment to next year now. 😢

Has anyone else experienced this?

I’m feeling pretty rubbish with it including fatigue, tremors in my hands and generally feeling pants! Just feel like we can’t catch a break and desperate to get on with treatment!

Thanks in advance for your replies as always. Don’t know what I would do without this community! xxx

[Kiedy84]

Hey hun, I understand you are keen to speed up things but they are doing the right thing trying to get your thyroid under control first.

Do you know what made you go from under to over, do you suffer from Hashimoto's Thyroiditis? I would ask the doctor about the following:

Do you know your current TSH, T3 and T4? Are they going to test your antibodies too?

Have you done some reading on NICE website as well British Thyroid Foundation ?

Diet and lifestyle very important in improving symptoms. Have you read any books by Izabela Wentz? xx

[Kat_15 in reply to Kiedy84]

Hi Kiedy. Thanks so much for your message. Many congrats on your pregnancy! How are things going so far?

We were referred for IVF at the end of last year. In early Jan my TSH was 3.06 and my T4 was 13.

After my first egg collection my TSH went up to 3.89 and my T4 20.9. I then started levonthyroxine 25mcg. My TSH went down but by T4 was higher at 26.8.

Gradually my TSH came down to 0.18 in July but my T4 was 28.2 (My medication dose went up to 75mcg a day at one point).

Following my failed FET in August my TSH dropped to 0.02 and my T4 was 42.6. I came off Levothyroxine then (I had been on 50mcg daily). I think I took too higher dose for too long. Since then my TSH has dropped further to 0.01 but my T4 has gradually come down to 24.7.

The consultant tested for antibodies but the results hadn’t come in by the time I went for my appointment today.

She asked if there was a history of autoimmune conditions in my family. My Mum has psoriasis (I don’t) but we both have asthma.

I see from your profile you were diagnosed with this. How were you diagnosed? Did you have any symptoms? xx

[Kiedy84 in reply to Kat_15]

Hi hun sorry for a delay in getting back to you. I had big problems because my clinic didn't take things seriously and they considered by TSH of 4.6 as normal. In the end when I was back home in Poland visiting I went to a private lab and they did all thyroid tests, and that's how I discovered I have Hashimoto's, because of the raised antibodies. I then had a private endocrinologist app and a scan confirmed changes in my thyroid.

I then went back to the UK and waved the results in my GP's face and the clinic and only then they started taking this seriously. I also paid to see a private endo in the UK and he is still looking after me.

I believe our IVF was successful because my thyroid was working at the most optimum level.

I had lots of symptoms for many years, people with Hashimoto's can actually suffer from both hyper and hypo symptoms! My GP wanted to put me on antidepressants but I knew deep inside this wasn't it so I spent hours researching, looking at my results when I was a kid, I remembered I was taking something for thyroid as a teenager and then bit by bit I build a picture and I just knew!

I know TSH of 3.06 doesn't seem like a lot but they should have started you on Levothyroxine back then and test for antibodies. This should be a norm for any lady who is trying to conceive but has problems.

Sometimes simple blood tests would save the NHS thousands of pounds and us heartache of going through IVF.

I wish you all the best and if you do discover you have Hashimoto's or another autoimmune disease don't worry to much, we can still get pregnant and have healthy pregnancies 😃 let me know hun I will be thinking of you xxx

[Kitcat12]

Sounds like it was a really useful appointment. I know it's frustrating that it puts your treatment off for a while but you do want it under control in order to give you the best chance x

[Kat_15 in reply to Kitcat12]

Thanks Kitcat. How are you?

I know you’re right it’s just so hard to get my head round it. I hate the thought of having to face our third new year thinking ‘this will be our year’. It’s just a bit heart breaking. xx

[Kitcat12 in reply to Kat_15]

Of course! It's very frustrating when the process takes so long. You'll be surprised how quickly your thyroid stabilises once they sort your levels and dose out. All good my end, thanks for asking x

[Kat_15 in reply to Kitcat12]

Aww thank you. Glad all is good with you. xx