Lost, confused, worried - trying to conceive and thyroid/lining/progesterone issues

[er2012]

Looking for some help/guidance/support. Apologies in advance for the long post.

My husband and I, both 31 and healthy, have been trying to conceive for a year now with no success. We've both had a number of tests and through my own reading and persistent private re-testing have identified my thyroid could be a potential issue. Although I do have regular periods and ovulate.

My TSH levels have fluctuated in the last 6 months from 0.083 (March) to 4.71 (October), with a number of other results between 3 - 4 in the months between.

My T3 and T4 results have been tested a few times also (only when going private as NHS/GP won't) and they have been around 4 (T3) and 14 (T4). My most recent (October) T3 and T4 results were 4.4 (T3) and 14 (T4), this was with the above-mentioned October TSH of 4.71.

In September I tested positive for TG antibodies with a result of 106.

The lab reference ranges have been 3.1-6.8 (T3), 12-22 (T4), 0.27 - 4.20 (TSH) and <40 (TG antibodies).

I had my bloods taken just before 9am, fasted and had stopped taking vitamin supplements a few days prior.

In September i was also tested for a number of other vitamin deficiencies including B12, Serum Folate, Sodium, Potassium, Ferritin, Vitamin D etc and all were at very good levels (can share exact results/ranges if helpful). That said, I have very recently started taking Vitamin D, Iron, Iodine, broad range B vitamins, B12, Zinc, Vitamin C and Magnesium supplements (in additional to my daily folic acid).

I was also Coeliac screened in September which showed no issues, my result was 1.9 and the reference range was <20.

My father was diagnosed with hyperthyroidism around 20 years ago when he was 45 and heavily symptomatic, he ended up having his thyroid destroyed and has been on daily thyroxine ever since. He does not know/can't find medical records that confirmed the root cause of his.

Other than struggling to conceive, I have no identifiable symptoms.

Thankfully I have private medical insurance through work and have been able to have a number of these blood tests via a private endocrinologist who has diagnosed me with auto-immune thyroid disease and recognises optimum TSH levels for trying to conceive are lower (<3.5, possibly closer to 2.5) and based on my latest October blood results has started me on 50mg of Thyroxine. He has said that it is usual to see with Hashimotos the thyroid function jumping from under to over and back again before settling longer term as permanently underactive, but this could take a number of years still before it does this, therefore starting the medication now is sensible.

However my GP refuses point blank to continue the prescription, repeat blood tests or refer me to an NHS endocrinologist given my TSH levels are in their 'normal range', even though they know we have been struggling to conceive for a year (they were so condescending, rude and unhelpful to me at my appointment that I cried). I have taken many reference material in with me including from SAGE journals, Thyroid Association and Thyroid UK regarding TSH ranges for conception and healthy pregnancies but it made no difference. Therefore it looks like I will have to continue with a private prescription and testing, not ideal but something I am willing to do this if it results in a healthy pregnancy.

The last thing I want to add on this is that I have now had a pelvic ultrasound just after ovulation which has confirmed that my uterine lining is breaking down earlier than it should, most likely due to a lack of progesterone. I am ovulating (as confirmed by pelvic scan) but I typically ovulate around day 18-20, with cycles usually around 33 days. I've not yet had a progestrone blood test to confirm exact levels but the sonographer and gynecologist were very certain low levels of progestrone were to blame for my lining breaking down after ovualtion. They have therefore recommended mild letrozole for ovarian stimulation prior to ovulation and progestrone (cyclogest) pessaries post ovulation (and well into my pregnancy if I fall). I mentioned my thyroid issues to them and they said there is a link between thyroid disfunction and low progestrone levels but I could still take thyroxine and the drugs they have recommended together.

So really I think my questions are:

1. Does anyone have any experience with underactive thyroid/Hashimoto's and struggling to conceive, particularly with low progesterone/thin lining also being detected?

2. Given I have only just started on Thyroxine, should I give it 4-8 weeks and see if the Thyroxine alone results in the progesterone/lining improving or should I just go for it all at the same time?

3. Any other general guidance/support you think useful based on what I have said above. Similar stories and positive TTC outcomes particularly welcome !

Many thanks all. Sorry for the length, appreciate anyone taking the time to read and reply. Just feeling very lost and alone on this journey as am seeing different doctors on different issues and trying my best to piece it altogether and work out best next steps.

[Purple276]

HiIt's helpful that you have found this all out now and have private medical insurance and the extra info will definitely support you in your journey to conceiving.

Personally I also found the GP also wouldn't look at any of my thyroid issues unless over 5 so have had to pay for private prescriptions. I waited 18 months for various NHS checks to get an IVF referral and if could do again I'd find a private consultant and pay to skip the delay and have proper scans and checks. The clinic assumed the NHS eliminated some issues so no-one looked at my tyroid or vit D levels until 3 years in 🤦🏼‍♀️

Another useful test is a HSG dye ultrasound to check your tubes. It can help for the following few months and in my case this showed I had 1 blocked which would have prevented IVF working and meant I needed an op.

Hope the above helps and look through some previous messages on this forum and you should find some useful advice and also show you are definitely not alone and we've all been trying to find answers. Hope your journey isn't much longer. Good luck xx

[er2012 in reply to Purple276]

thank you! Glad at least I’m not alone with rubbish GP’s.

I’ve had a HyCosy already which has shown no issues with my tubes which is good as can rule that out.

Hoping the Thyroxine does the job for us.

[Marisa32]

I have Hashimoto's. My endo gave me meds to keep my TSH around 1 and no higher than 2. Once you get on the correct dose of meds, thyroid should not be an issue anymore. Sorry, can't give you any insight on the other issues.

[er2012 in reply to Marisa32]

thank you. Where are you based and would you recommend your endo? Feel like I would like to be under an endo that recognises such TSH levels as optimal when TTC.

[Marisa32 in reply to er2012]

I'm in the US. I believe in the UK it's not easy to get to an endo unless you go private? It's worth it though, regular doctors have no clue how to treat thyroid let alone help women who are ttc and have Hashimoto's. Hope you can find one. There maybe few UK based women on here who found an endo and probably can make recommendations. Good luck!

[er2012 in reply to Marisa32]

ah, bit far then 🙂 no problem, had a research today and found a well regarded one in London. Thank you.

[CassieJ]

Hello-sorry you’ve had such a hard time with your NHS GP. Just wanted to say that I had lining and thyroid issues and managed to conceive and have a healthy pregnancy to term with levothyroxine, progesterone pessaries and (whilst I ovulated naturally) we did induction with mild stims to boost my lining. My lining issues were due to scaring due to recurrent miscarriage/previous pregnancy loss. If I were you I would use all the meds you mentioned (go for all of it) as they are likely to work in combination (this is purely instinct from my own experience -Not at all rational/scientific!). Tons of luckxx

PS the sub-clinical thyroid thing on the NHS is tough-think it’s about luck of the draw depending on who you get. Also I do think that endocrine/auto immune stuff is often done better privately as its quite complex and things can get lost in the system if you don’t see the same person regularly for all your tests /assessments -again this is just personal experience.

[er2012 in reply to CassieJ]

thank you. Helpful and reassuring to hear this.

Sorry for dumb question but what is induction with mild stims?

[CassieJ in reply to er2012]

not a dumb question-it’s a v low dose of ivf drugs for ovulation induction not actual ivf so 75 of menopur for example.X

[Purplehedgehog87]

I would suggest asking for a referral to fertility clinic and also endocrinologist if GP won't look at it as there could also be other issues to explore such as blocked tubes for example and they may be more helpful . If the doctor you see won't do it see another within the practise as you are entitled to seek second opinion or see who ever you want, generally I find nurse practitioners are generally more helpful too, nurse practitioner was one who referred me to fertility clinic . Also, not that its the nicest thing but 90% of couples will conceive within 2 years and if you get sorted with treatment for thyroid issues it may well sort out, although to be fair for totally unrelated reasons we've ended up on IVF. I totally understand the time stuck in limbo with nothing seeming to work x

[Babymagic37]

hello! I just wanted to say I totally understand your worries and questions! On our 6th round of IVF we suffered a chemical pregnancy and since then my thyroid hasn’t stopped playing up (it was always fine before this time). I’m now under a private endocrinologist who is testing me for autoimmune issues. So far it’s come back negative for Graves but my recent TSH result (2.11) and Free Thyroxine (10.6) may suggest I’m now going from hyper to hypo so will need another test for Hashimoto’s.

It’s all so worrying when trying to pregnant isn’t it!! Unfortunately I can’t tell you much about the link with lining and the thyroid but it may be worth talking to a Reproductive Immunologist about these issues. These are people that help put an immune protocol together for pregnancy/ivf. I can send you a few names on private message if you would like. They can be expensive but I’ve heard of lots of women falling pregnant after getting the right balance of medications even with severe immune issues. We are planning on visiting one in the new year if my thyroid continues to fluctuate.

I know this journey is tough, you’re not alone!! 💕 x x

[er2012 in reply to Babymagic37]

Thank you for your reply. Yes please if you don’t mind on the Reproductive Immunologist. I am based just outside of London.