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

[ER12]

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 ovulation. 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?

1. Given I have only just started on Thyroxine, I am wondering whether to give it 4-8 weeks and see if the Thyroxine alone results in the progesterone/lining improving rather than just going for it all at the same time. Does anyone have any experience with this?

1. 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.

I am so sorry your GP was so rude and wouldn't continue your thyroxine. Slightly different but hopefully my story can offer a bit of help-
I had an issue with my TSH levels going up when I was undergoing fertility treatment. My naturopath recomended levels closer to 1 for optimal fertility however my fertility clinic was happy with anything under 4.5. After my first failed round of IVF (which was my only NHS round) I went private with the same clinic and raised with them my increasing TSH level (it was going up to close to 4.5 over only a few months) and they still weren't bothered. I pushed and eventually they agreed to write me a prescription for 0.25 thyroxine. It may have been a coincidence but that next round of IVF resulted in me getting pregnant for the first time and I now have my son. They continued my thyroxine while I was pregnant but stopped it once I had given birth. I now want to try for a second however I am wondering if I am going to have the same issues with my TSH levels again. I know the GP won't prescribe it unless it is over 4.5 so I may see if I can get a private prescription again from the clinic. I guess they will test my levels again when I go in for my initial tests (once i get my period back).
I feel like I may have had issues with progesterone too since I always started spotting before my period. I'm quietly hopeful that being pregnant may mean my cycles come back better but I guess there is the chance my issues will be even worse with being 2 years older!

I would definitely give the thyroxine some time to work and see how you are feeling after that. Sending you lots of luck x

Thank you for your reply @Jane1284, your experience is encouraging and interesting to know.

If you don't mind me asking, what was the reason you went for IVF e.g. unexplained infertility, thin lining, semen linked issues etc?

I was 35 and we had been trying for 6 months when I was referred for tests by my GP. The tests the fertility clinic did showed I had low AMH and a very low number of follicles when they did the scan. Because of this they recommended I started IVF ASAP as the longer we left it the less likely IVF would work for us (because of my low number of folicles).

I see. Thank you. Best of luck with number 2.

If it is helpful to you, I have found the Health Unlocked Thyroid Support UK group which has so many helpful people/forums talking all things Thyroid. Including links to very reasonably priced at home thyroid tests and private prescriptions for Thyroxine.

Ahhh thank you! I think I stumbled across that thyroid support group a while ago but forgot all about it. Will check it out. Currently follow the Health unlocked Fertility Network UK page which sometimes has discussions about thyroid health too.

Hi @ER12 - how are things now/ have they settled? I have similar thyroid and TTC issues but I am doing IVF and finding it hard to manage thyroid around it.

@Confusedkp hi - yes they did thank you. I am currently 11 weeks pregnant. Scan next week so we shall see if it has stuck! We fell naturally in the end without any of the hormonal support. Main thing I think was getting my thyroid stable (TSH under 2) and also addressing some microbiome issues in both my husband and me. We also both took a number of supplements, had regular acupuncture and really cleaned up our diets like cutting out caffeine (not sure how much difference this made but helped feeling like we were taking control). We worked with an amazing and knowledgeable fertility acupuncturist in the end who helped us so much. I never had a rescan so not sure what my lining looked like after my thyroid stabilised.

Sorry to hear you’re going through it as well. Why are you struggling to manage your thyroid? Are you on thyroxine and do you see an endocrinologist?

@ER12 congratulations! That's wonderful to hear!!!

I am on thyroxine but similar to ur initial post I have seem TSH drop too low and then increase drastically and basically be up and down without stabilising.

How did you identify the microbiome issues?

I'm struggling to find an endocrinologist who would look at all the effects even on fertility - do u have a good one you would recommend?

@Confusedkp thank you. It has been a very long, stressful and emotional road for us.

So in the end my diagnosis was silent thyroiditis which is typical of fluctuating levels before usually settling as underactive. A good fertility endocrinologist I expect would be able to manage this for you, mine is amazing and I am still under him but on a private basis not NHS. I’d absolutely recommend him but he is London based so not sure if this would work for you.

In the meantime checkout the health unlocked thyroid forum, so many knowledge people on there that could offer you some advice.

The microbiome stuff was all co-ordinated by our fertility accupuncturist who again I’d recommend if you are located anywhere near London. Let me know if so and I’ll message you with all the details. If not the test I did was the vaginal microbiome swab by Invivo Healthcare but you can only do it through a practitioner so they should be able to tell you of any practitioners near you.

@ER12 can I ask where you got your coeliac screening?

I'm also interested in your acupuncturist recommendation.

Congratulations on your pregnancy

Hi @Whataretheodds my endocrinologist tested me for celiac disease as part of one of my first blood tests.

Will message you the details of my acupuncturist.

Hi @ER12, I realise this is a very old thread but I’m wondering if you ever got to the bottom of this?

I’m going thought ivf next month, also spot before periods, low progesterone results and have high tpo antibodies at 230. I’m wondering if it’s all linked but my clinic seems to have dismissed it all x

Hi @Bloop123 - sorry to hear you’re not having an easy journey either. It very much resolved for me, I’m typing this snuggled up to my 16m daughter!

We fell naturally in the end. Main thing was getting my thyroid stable through thyroxine supplementation (TSH under 2) and also addressing some microbiome issues in both my husband and me, along with supplements and accupuncture.

My spotting stopped, progrestrone rose and we fell pregnant very soon after. We worked with a knowledgeable fertility acupuncturist who helped guide us through all the above.

Have you see an endocrinologist at all? Do you know what your TSH levels are?

Not sure where you are based but if anywhere near London my endrocrinologist was brilliant and worked a lot with fertility patients, including those going through IVF.

@ER12 Congratulations on your daughter that’s amazing! I am really interested in the microbiome testing and help you had with that? We are cycle 6 TTC but I am 36 with low AMH (not horrendous but could be better said my doctor) all my bloods have come back good, TSH was 1.71 and sperm good. I just don’t understand why it’s not happening! Someone else mentioned microbiome and I feel I want to try something to help that but I don’t know if it’s an issue?!

Hi @Thisisouryear2025 thank you. Every month feels like a year when you are trying so I truly sympathise. Around 6 months I started to get really anxious. I did the vaginal microbiome swab through Invivo Healthcare but it was all arranged by my fertility acupuncturist who is very much in the holistic fertility space I.e. the bigger picture of what else might be going on in your body is considered. Would definitely recommend looking at a practitioner in this space. I found going via the GP/gyno route I was shrugged off untill we’d been trying for a year then it was recommended I just try the hormonal/IVF route. Helpful for some of course but wasn’t actually necessary for me - my acupuncturist described me taking the IVF route would have been like cracking a nut with a sledgehammer!

@ER12 Thank you so much. Do you know what you took to target the microbiome issues? I don’t actually have any symptoms of any imbalance down there or any belly issues but you really just don’t know!! I do agree that there is often a bigger picture. I do think I need to give it the full year, however it’s horrible every month!

@Thisisouryear2025 antibiotics, both my husband and me. Then high strength pro-biotics! Best of luck on your journey 🩷

Ok amazing I’ve ordered some decent probiotics as there is no harm in taking them! Thank you so much 🩷

Hi @ER12 thanks for your reply, I have since realised I have a tsh of 6.9 and they have prescribed me 25mcg thyroxine. I was wondering how much you were prescribed to level your tsh?

25mcg seems like a tiny dose but my GP is refusing to prescribe me a larger dose xx

Hi @Bloop123 - I am no endrocrinologist but that sounds a rather high TSH and low thyroxine dose for someone TTC to me. Once I got to a sensible endrocrinologist (privately) I was prescribed 50mcg which brought my TSH to around 2. Think my TSH at its highest was around 4.5

My GP also wasn’t very good / knowledgeable in this respect either. They don’t recognise optimal TSH levels for fertility are so much lower than the non-TTC folk! Incredibly frustrating and stressful.

Thanks @ER12 i honestly feel like I’ve been banging my head against a brick wall! My tsh level was 3.09 three years ago, when I started getting spotting symptoms, and I didn’t even realise as my GP said that was all normal. So I do wonder if this could have all been fixed that long ago! Thanks for your reply anyway, you have given me hope. I’m current looking for a private endocrinologist x

I totally understand the feeling @Bloop123 my GP was so rude and dismissive about it all, despite me taking in facts from the British Thyroid Foundation, I actually cried in the surgery.

Perhaps yours might be more open to the facts - see https://www.btf-thyroid.org/pregnancy-and-fertility-in-thyroid-disorders
specifically - ‘If you are being treated with levothyroxine, it is recommended that your TSH should be less than 2.5mU/l before and during pregnancy.

Failing this, I would definitely go for a private endocrinologist that understands fertility. If you are anywhere near London I have a brilliant one I could recommend.