What to try next for my thyroid (+ to get pregnant)??

[chinita]

Hello everyone!

I was diagnosed with hypothyroidism in 2018 at age 38 as part of my fertility investigations (we have been trying to conceive since 2016).

Then in 2019 I tested my antibodies and discovered it was Hashimoto's. When I first started measuring my antibodies in 2019, the TPO varied from 120.8 to 194.8 (lab range 0-10) and the TG from 16.4 to 30.9 (lab range 0-4). I then switched to a different lab in 2020, and my TPO has varied form 176 to 248 (lab range <34) and my TG between 526 to 698 (lab range <115).

I took T4 only (Levothyroxine) from 2018 to 2020 - first 50mcg until November 2019, when I started to take 75mcg.

On T4 only my TSH was "normal" but not optimal, fluctuating from 1.61 to 2.18 (lab range 0.27-4.20), my fT3 was always at the lower end of the range (fluctuating from 2.8 to 3.57 / lab range: 3.74-6.11 pmol/L), and my fT4 was always at the upper end of the range (fluctuating from 17.9 to 20.4 / lab range: 11.5-19.6 pmol/L), so I think I had a conversion problem.

Then in late July 2020 my fertility doctor put me on T3 only 20mcg twice per day. By early October I was hyper, with a very low TSH of 0.06 (range 0.27-4.20), low-ish fT3 of 5.37 (range: 3.74-6.11 pmol/L) and below range fT4 of 7.5 (range: 11.5-19.6 pmol/L).

I then went one month on no medication at all, as my doctor wanted to see how my thyroid "settles". In early November my TSH was 6.03, fT3 4.07 and fT4 13.1, and my TPO jumped from 184 in October to 248 in November, TG from 526 to 698.

My doctor then told me to start the T3 again, this time 20mcg once per day. With this, by January 2021 my TSH had gone down to 0.76, but again my fT3 was below the range at 2.77 and my fT4 was also below the range at 8.7.

My doctor now wants me to go back to Levo, which I know doesn't work for me, so I'm looking for alternatives. I still have (and have continuously had, except during the short amount of time when I was hyper last October) the same hypo symptoms I've always had, i.e. freezing cold hands and feet, constipation, general lack of energy and brain fog, as well as extremely weak and thin nails.

If anyone has been in my situation, could you please let me know what's worked for you? Or if anyone can share any suggestions on whether I should try a combination of synthetic T4 and T3, synthetic T4 or T3 + NDT, or NDT only? I'm not looking for medical advice, just other people's stories and experiences so that I can start to form an understanding of what direction of travel I could consider next.

Also, if anyone knows of a doctor who could help me (ideally someone open to prescribing NDT) please feel free to PM me. I've been reading about Dr Frey and I'm thinking of booking an appointment with him so would particularly welcome any messages if you've had the opportunity to work with him.

***

Regarding other testing: I was unemployed during all of 2020 so wasn't able to afford much extra testing on top of the basic thyroid tests, but I did an adrenal saliva test (6 samples throughout the day) just now in February 2021 and all results were bang on in the middle of the reference ranges, except one was at the lower end but still inside the range.

My vitamin D 25-OH test was 58.4 ng/mL in August last year, while supplementing with 5000IU per day. After that I raised it to 10000IU, but I haven't retested the vitamin D as I haven't been able to afford it.

My ferritin was 42.3 ng/mL in August las year, again I haven't been able to afford to retest after that so I don't know what it currently is.

I have a job now and would like to do some further testing, so would be happy to hear any suggestions on what would be the most important tests to have, in addition to the thyroid labs.

***

Other possibly important background info: I've been taking low dose Naltrexone since May 2020, my dose has varied between 2.5mg and 4.5mg. I haven't noticed any difference in my symptoms or lab results whatever dose I've been on. I think for me LDN does absolutely nothing, unfortunately.

I have also another autoimmune condition (Raynaud's syndrome) and some abnormal immune results that were discovered by a reproductive immunologist (high NK cells, high TNF alpha), allergies and eczema, asthma which is in remission but can be triggered by e.g. animals that I'm allergic to, as well as endometriosis and adenomyosis (the same as endometriosis but inside the womb) which cause a constant state of inflammation in the body.

I've been gluten-free, dairy-free, sugar-free, caffeine-free and alcohol-free since October 2018, and on AIP since November 2020. Recently I've started to reintroduce some seeds and nuts, as I felt my diet was too restricted. I suspect I have SIBO and candida overgrowth.

Massive thanks in advance for all and any advice!

[Rapunzel]

Have a look here

healthunlocked.com/thyroidu... and scroll down a bit to see the text of the newspaper article - link takes you to a paywall...

Good luck x

[chinita in reply to Rapunzel]

Sorry I'm late responding to you, just wanted to thank for your reply. xx

[SlowDragon Administrator]

Your current doctor seems clueless

Jumping around with dramatic dose changes is never going to work

Your high thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s

Many Hashimoto’s patients have poor conversion of Ft4 to Ft3

Most do best on levothyroxine plus small doses of T3 prescribed alongside levothyroxine

Typically 75mcg levothyroxine plus 3 x 5mcg T3 as split dose

Or 100mcg levothyroxine plus T3

It’s rare to need to be on only T3 and never ever T3 only for any pregnancy

Just 20mcg T3 was enough to shut your thyroid down, but completely inadequate replacement

Suggest you consider resting on 75mcg levothyroxine plus 2 x 5mcg T3 as split dose approx 12 hours apart

Or 75mcg plus 3 x 5mcg T3 as 3 split doses approx 8 hour equal intervals

Many people find different brands of levothyroxine are not interchangeable

Which brand of levothyroxine have you got

[chinita in reply to SlowDragon]

Thank you! Apologies for the massive delay in getting back to you and thanks for taking the time to respond to me. I'm now pretty much on a combo like the one you recommended (100mcg T4 + 18mcg T3 split into two doses of 9mcg), but I've still got symptoms so something's not right. Before going on synthetic thyroid meds I spent last year on NDT (Arm@ur) and felt fantastic even though my lab values weren't optimal. Now all my hypo symptoms are back and I don't know whether to go back on the NDT or try to continue to experiment in order to find the right dose of T4 and T3...

[shaws Administrator in reply to chinita]

If NDT has suited you and you felt better I would continue.

NTD's were invented in1892 - before this people just died, so it was the very first 'life-saver' for those who had a dysfunctional thyroid gland. As it is made from animals' thyroid glands, it is more conducive to the human body than a synthetic replacement.

I don't split T3 due to Dr John Lowe's advice (an expert in the use of T3 or NDTs would never prescribe levothyroxine). He stated (and he took T3 himself) that one daily dose of T3 would be beneficial as it then saturates the T3 receptor cells and it then sends out 'waves' throughout the day. One dose of T3 can last up to three days. I have trialled this i.e. took one dose of T3 - took none on day two and day three and I felt fine. I only did this once as an experiment.

He resigned his Licence so that he could still continue advising/helping patients as his method went against the guidelines that state that levothyroxine should only be prescribed.

Like many on this forum, levo may not relieve symptoms for some people (I am one).

I take T3 only and am well and symptom-free. Few Endocrinologists seem to be unaware of how to restore many hypo patients health as they insist that levo only should be prescribed.

[Lizzo30]

Progesterone is essential for pregnancy and figures in thyroid health too , maybe you should get your progesterone levels tested ?hypothyroidmom.com/progeste...

[chinita in reply to Lizzo30]

Thank you, and apologies for the delay in getting back to you. I was testing my progesterone every month from May 2020 to January 2022, while I was doing ovulation induction cycles. Now I'm back on my natural cycle I don't really need to test it as I can see from my symptoms (my luteal phase is too short, and I have spotting before my period) that my progesterone levels are not good enough...

[Jazzw]

Then in late July 2020 my fertility doctor put me on T3 only 20mcg twice per day. By early October I was hyper, with a very low TSH of 0.06 (range 0.27-4.20), low-ish fT3 of 5.37 (range: 3.74-6.11 pmol/L) and below range fT4 of 7.5 (range: 11.5-19.6 pmol/L).

You weren’t hyper. You weren’t even over-medicated. You just had a low TSH, which by itself doesn’t mean you’re overmedicated. Your doctor shouldn’t have taken you off T3. And taking you off medication altogether was downright irresponsible.

20mcg liothyronine wasn’t enough. 40mcg looks like it could have been enough but your doctor panicked unnecessarily over a suppressed TSH.

I agree with Slowdragon—your doctor seems clueless.

[chinita in reply to Jazzw]

Thank you and apologies for the delay in getting back to you. Sorry also for not including all details in my post - I just felt it was already so long I had to edit it down somewhere... But I was having all the hyper symptoms when I was on the twice per day dose of 20mcg T3 - heart palpitations, insomnia, anxiety, extreme sweating, etc. I felt absolutely awful so that medication plan obviously was the wrong approach for me.

I'm now on a combination of 100mcg T4 and 18mcg T3, but it's not working for me either as I'm suffering from all my usual hypo symptoms. From May 2021 to March 2022 I was on NDT (2 grains Arm@ur) and felt fantastic - for the first time my symptoms disappeared! - but my labs weren't optimal even then. It's such a minefield trying to get the thyroid sorted out... Every time I think I've discovered the solution, turns out it was a false alarm and I need to keep looking...

[shaws Administrator in reply to chinita]

Blood tests were invented along with levothyroxine alone. Therefore if we add or take other than levo our TSH will be different.

NDTs were invented and were made from animals' thyroid glands and contained all of the hormones a healthy thyroid gland would have.

I was really surprised it was withdrawn but the hypo patients who were well on NDTwere shocked as they had no other options available.

I don't understand how 'experts' appear not to be 'experts as they know nothing about NDTs - the very original replacement from 1892.

[shaws Administrator]

The following link may be helpful as Dana Trentini had problems re pregnancy and that's why she began her helpful site:-

hypothyroidmom.com/about-da...

[chinita in reply to shaws]

Thank you and apologies for the delay in getting back to you. xx

[shaws Administrator in reply to chinita]

Don't worry as you were probably searching different things at the same time.

[Serendipitious]

I’d also recommend reading up on these articles about Hashimoto’s and pregnancy by Dr Izabella Wentz, known as The Thyroid Pharmacist.

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

[chinita in reply to Serendipitious]

Thank you and apologies for the delay in getting back to you. xx

[Serendipitious in reply to chinita]

chinita,

That’s ok I hope you’ve made some progress but if not feel free to let us know.

[chinita in reply to Serendipitious]

Thank you so much, that's so kind of you!

Sadly I've not really made much progress... I was for a year on NDT (Arm@ur) and felt great - for the first time I had no symptoms! - but my labs were still pretty bad.

Now I've been on a combination of synthetic T4 and T3 medication since January and all my hypo symptoms are back. I'm currently on 100mcg T4 and 18mcg T3 split into two 9mcg doses. Trying to find a doctor who could monitor a pregnancy on either NDT or T4+T3 combo as I'm planning to have a frozen embryo transfer in June or July but getting increasingly scared that I won't be able to stabilise my thyroid before that and will have to delay the transfer...

[Serendipitious in reply to chinita]

chinita,

If you felt great on Armour why did you switch to synthetic hormones? Was it the TSH you were concerned about?

[chinita in reply to Serendipitious]

I switched because I'm trying to get pregnant and all the doctors I spoke to said that there's nobody in the UK who would know how to monitor my thyroid through a pregnancy if I'm on NDT. So I switched because I had to, not because I wanted to... If I could find a doctor capable of monitoring me through a pregnancy on NDT, I'd switch back immediately.

[Serendipitious in reply to chinita]

chinita,

Sorry to hear that. What a tricky situation. I wonder if it’s worth you posting in the fertility network forum. Perhaps others are in a similar situation.

[Niv123]

No, I'm not in your situation and have absolutely no technical knowledge... but have been researching intensely on high dose thiamine and vitamin c... and also vitamin d.

Some people seem to believe that most forms of hormonal imbalances are actually vitamin d deficiency. If your vitamin d is less than 70... tey to get it to 70... not sure if itll solve your problem... but it will most certainly take care of your malnutrition if you do have vitamin d deficiency.

Best

[chinita in reply to Niv123]

Thank you and apologies for the delay in getting back to you. I've now sorted out my vitamin D levels (it took liquid D3+K2 drops as I wasn't absorbing properly from capsules)- my levels have been consistently between 80 and 140 for the last year - but sadly I still suffer from all my other health issues so turns out fixing the vitamin D wasn't the key to fixing everything. I'm now looking into high dose thiamine supplementation, but still also trying to optimise my thyroid meds. It's not easy...

[SlowDragon Administrator in reply to chinita]

What vitamin supplements are you currently taking apart from vitamin D and K2

What were most recent folate, ferritin and B12

Are you on strictly gluten free diet

Suggest you start a new post with most recent thyroid results