I've got hashimoto's and was started on 25mcg levo by my fertility doc 4 years ago, managed to get a natural BFP 2 years ago that sadly needed in MC. 2 years later got BFP with IVF and currently 32+ weeks. Levo was upped to 50mcg and all been fine.
The thing I'm worrying about is my endocrine doc wants to stop my levo 6 weeks post partum because 'I wont need it'. My argument is that I'd like to have another baby soon after this little lady (hopefully not wishful thinking 🤣) and dont want to stop the meds and restart (as who will even Px me this) and then get all of the awful side effects (which are non existent now) again and wait for it to get into my system, putting my fertility at risk, age 34.
My question really is....is anyone or has anyone been in the same position? I was originally told I was started on levo to regulate my periods, which it did (hence me stopping it in pregnancy last time and likely cause of MC) but wondered if hashimoto's should be constantly treated? As I have been told that I will eventually develop hypothyroidism, the same as my sister.
Got a clinic appt tomorrow so will obviously ask the doc this, but want to be armed with some info/other ppls experience before I go and have to beg for them to keep me on it. Despite being a nurse I go into full patient mode when the tables have turned and just nod and agree 🤣
If you're still reading then thanks for listening 💞 xx
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Hashimotis requires life long medication, i was diagnosed after my 1st pregnancy, i continued on my 50mcg throughout both my other pregnancy, i dont even recall them monitoring it to be honest, your situation may be different as im not clued up on ivf but hashimotis doesn't just go away its auto immune and once you have it then meds are for life.
Thanks for replying 😊 I did think it was for life but obviously took the word of the 'expert' at the time. Thyroid has been monitored as with a natural pregnancy and docs have actually taken a backseat due to my levels being well controlled. However, I've only ever had my thyroid peroxidase levels checked once and that's when the hashimoto's was diagnosed over 4 years ago. Is this something that should get regularly checked or is it a case of once it's there, it's there? Initial reading was 167 xx
Once a good level my doct usually tests every 6 months, im in Australia though, both my sisters and mum also have hashimotis, i suffered 2 miscarriages and an ectopic pregnancy before my first girl, i now think thyroid was maybe to blame as my levels were always borderline, wasnt till after 1st pregnancy they then put me on levo.
Yeah I was getting checked yearly pre pregnancy but only for tsh t3 t4 etc, not for antibodies. In pregnancy I have had them at 8 weeks, 15 weeks and 28 weeks and tsh has been under 2.
I would strongly agree that thyroid plays a massive part in MC. But its odd that docs see a 'normal' tsh and dont treat, however tsh should be under 2 in pregnancy. I've had the GP receptionist tell me my level is normal a million times, yet when I've asked it's been over 3. You have to have a degree in it xx
Ive had antibodies probably tested twice in 16 years that ive been on medication it was over 1300 one time and 400 another so they do jump around, i was on 50mcg for around 12 years then after a routine check was up to 75mcg so it does need to be monitored also others will tell you on here to have all vitamin levels checked as we are prone to low levels as well as other auto immune diseases.
Yeah I've heard that about vitamin d. Thru IVF I took high dose vit d. I'm an ortho nurse but dont massively understand it all quite yet. Thanks for your help xxx
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially with Hashimoto’s
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor
Congratulations 🥳 not long now for that bundle of joy!
As has been said, no you don’t stop your Levo 6wks after pregnancy, in fact I would suggest that you may need an increase within the year, this is largely because you may have a surge of natural thyroxine or you may have another attack on your thyroid which will cause more thyroxine to be thrust out of your thyroid so your antibody count may go higher as they scoot around trying to clean up the mess. This is because babies can Ofcourse be so exhausting and stressful and those factors are not optimal when trying to calm and balance an autoimmune condition.
Try and keep your vitamin and minerals levels optimal. Ferritin, folate, b12 and Vit D, you may need to test these privately. And you really need to know your FT3/4 results and find your optimal. TSH alone will never be a good indicator. Antibody testing is not necessary after these initial diagnosis, it just confirms the reason for being hypo - autoimmune and that’s that.
I’m always curious when members say this but then talk about TSH being a certain number and whether or not to be concerned about rising/falling antibodies and also only being on 25mcg of Levo. It then peaks my curiosity about what they consider ‘optimal’ 🤔
It's around 1.33 currently. I purely havent wrote the numbers as I am not concerned about them, having seen all results and their ranges and am aware of my optimal range having had in depth talks with my fertility consultant/obstetric consulant/endocrine consultant and being a registered nurse myself. I'm not concerned about antibodies rising or falling, but wondered whether anyone had theirs checked again after diagnosis of hashimoto's. I was only ever started on levo for fertility reasons, not for health/medical reasons and my dose was started at 25mcg purely for TSH to be optimal for conception (under 2) which it always has been, then was doubled once pregnancy confirmed.
Ofcourse if you have faith in your medical team then I’m pleased for you, just curiosity on my part and with statement like ‘TSH has to be under 2’ it makes me all the more curious because TSH has very little to do with Thyriod health (once a Hashi diagnosis and treatment)Forgive my curiosity! The beginning of Hashi’s and hypo can be slow but be prepared for after birth! It might start with a vengeance and you’re already being given false information.
Agree ! I was diagnosed with Hashimotos back in 2005 - high antibodies and in range TFT's. My GP prescribed Levo - " to support the thyroid whilst under attack " I lived in Greece for 15 years from 2004 - where I found a more open approach !
I won't be taking no for an answer if theres something not right. But yes I do trust my docs, they have decades of experience in this field and have done right by me for the last 4 years. I've never had ill health from hashimoto's, just fertility problems
I’ve no idea what MC and BFP are, but it sounds crazy to me to stop your medication. I would hope they will at least monitor it before doing so.
Many of us here on thyroxine have a suppressed TSH - mine always comes back below normal, but thankfully my GP never changes my dose and I continue to feel well.
I believe people can temporarily need some help with their thyroid, but if you have antibodies, then my understanding is you will always need medication. I was borderline at first but because I had antibodies my GP started treating me - he said my thyroid would continue to fail moreso in time.
yes< hashimotos is for life, and it can mess up your natural fertility. Good luck with the baby, but you have got this forever and you are likely to meet some very ignorant doctors.
You do need copies of all your test results with ranges to help you fight your corner. They will also show if you need a dose increase. Too many docs go by the TSH which is so wrong.
B12 - Folate - Ferritin - VitD - all need to be optimal for Thyroid hormones to work well - yours and the ones you take. Good for baby too ! Hope all goes well with your appointment.
The Doc who wants to stop your dose ? Did s/he mention testing first ? Stopping is not right ...
If you have high thyroid antibodies, aka Hashimoto’s it’s almost certain you will need to remain on levothyroxine for life.
Always get FULL Thyroid and vitamin testing as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before
Make sure to stop any vitamin supplements that contain biotin (Eg vitamin B complex) a week before ALL BLOOD TESTS as biotin can falsely affect test results
So basically what she said is she aims to stop levo after delivery and recheck at 6 weeks. She explained the reasons why she didnt recommend to treat with levo when I am not trying to conceive (which I completely understand) as every other result other than thyroid peroxidase was normal/optimal and has been throughout the 4 years since the first blood test. She stated that only 3% of hashimoto's actually needs to be treated (not sure if that's UK figures).
She recommended that when trying to conceive again that my GP refer me to the pre pregnancy clinic where they will again check levels and start levo as per results, which i was happy with.
Thanks to everyone for their information, you've all been great 💞 xx
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