I’ve been taking levothyroxine since Dec 2021, trying to understand the right dose. Finally 75mg seems correct to keep my TSH under 2.5, the ideal range to conceive and stay pregnant. On 7th JulyJuly I was 1.01 then I had one IVF cycle.
I took in August- prep month 10mg provera 9am and 10mg 10pm. This is from day 14 to day 25 of my cycle.
Then, in September on my first day of cycle I started buseralin 0.2 everyday at 8am, I took my levothyroxine at 6am.
Then on day 3 of cycle 3x75IU meriofert and 3x75IU fostimon everynight at 8pm.
this was for 7 day along with buseralin in the morning.
then on 20th Sep I had a trigger shot Gonasi 2x 5000 IU at 8:30 pm
Egg collection 22nd Sep
blood test 27sep 9am with no levothyroxine dose taken yet.
Results 7.5 THS
any idea if any of these medications could be the problem?
I’ll be doing another cycle in November
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Oskana
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Thank you so much, this is so helpful. I cannot believe that the GP is not helping and cannot give information - how could he/she? this is done by text message and/or e consult rubbish service, and if lucky sometimes I speak to someone sometimes I've got now a BUPA appointment with an endocrinologist, so hopefully can actually now tell me what to do. I will read all your links and also request to do a full profile. They have done it only once since I discovered that there was an issue with my thyroid, only because I am trying to conceive.
Yes I do get my printed results and this is the only way I have follow up myself and keep asking for follow ups and query my doses etc. Fertility doctors just limit to say that I should be 2.5 or under...the lab limits are 5.0 and this is why It wasn't picked up by the GP until I got to speak to a fertility expert. The whole thing very annoying and the only way to get this sorted as I can see is to find the info myself.
I am grateful for you thanking the time to share the info.
Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors …vast majority of endocrinologists are diabetes specialists and useless for thyroid
tukadmin@thyroiduk.org
Please add any thyroid and vitamin results and ranges that you have
The whole thinking about TSH and conception is utterly ludicrous! Despite what doctors think, and the range suggests, a TSH of 2.5 is not 'normal'. It means your thyroid is struggling to produce enough hormone to keep you well. You're not quite hypo, but well on the way to being so!
A truly 'normal' TSH (euthyroid) is around 1, never over 2. So it is utter rubbish to tell you that the 'ideal' TSH level to conceive and stay pregnant is 2.5. What the actually mean is that that it the absolute maximum it can be. But, for your good health and well-being it should be a lot lower than that. What was your TSH before you started levo?
Seems to me that what has actually happened, rather than the drugs affecting your TSH, you've just become more hypo - perhaps you have Hashi's? Did they bother to test your antibodies? If you have Hashi's, TSH levels are prone to fluxtuation. Also, what time of day do you have your TSH tested? Always at the same time? If not, you cannot compare them because TSH has a circadian rythme. So, if your doctor tells you that the 'ideal' TSH for conception is 2.5, ask him at what time of day? And, believe it or not, he won't have a clue!
TSH is not a thyroid hormone. It is a chemical messanger from the pituitary to the thyroid to make more or less thyroid hormone. The lower your thyroid hormones - T4 and T3 - the higher the TSH. Already at 2.5, the pituitary is screaming at the thyroid to buck its ideas up and make more hormone. So, it's not the TSH that your baby needs, it's the thyroid hormones themselves, which it will be absorbing, through the placenta, during the first few weeks of its life, until it develops its own thyroid. So, to base your ability to conceive and maintain a pregnancy on the TSH is a nonsense. It's the thyroid hormones themselves that should be tested and used as a guide.
So, what you need now, is an increase in levo, and further testing, I should say. And, never let them tell you it isn't necessary - they don't know what they're talking about! If necessary, get it done privately.
Thanks for taking the time to explain this, this is so useful and no one has ever flagged this. So, officially nobody has ever diagnosed me 😔 I've got my levothyroxine given by a fertility doctor after struggling to conceive, and it was he who pointed out that the thyroid is abnormal. My GP already got a few results but didn't even give me the medications. I got access to the UCLH fertility unit, however, I haven't seen a specialist (the GP insisted that it will take a long grr I am so annoyed about not being ever referred, basically they have never done their job as the actual medication referral came from UCLH).
It is likely that it is Hashimoto, thanks for flagging this and also the tips about the test. I have tried to get the booking before 9 am and I do not take my Levo until after, so it should be comparable - I read this online so I did it, as of course the GP has no clue. I did ask and he said it shouldn't matter!
I will see an endocrinologist and I will bring my results. Of course not always complete profile ans my GP mostly tests the TSH and T4 only, so I have a bit of a gap there, the antibodies twice.
I will call and try to get the full profile.
Your info is very useful for my conception plans, thank you and the person I am seeing has a specialty in
So I started to take Levo in Dec 2021, since I have tried to find out what is the best dose, a combination of me following up and checking with the fertility doctor (The Gp isn't helpful at all).
below are my results since all this started...well not sure since when I have thyroid issues, just since trying to conceive was tricky
High thyroid antibodies confirms autoimmune thyroid disease aka Hashimoto’s
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
ESSENTIAL to test vitamin D, folate, ferritin and B12
Exactly what vitamin supplements are you currently taking
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
That table is 100% me, trying to find out what is going on. I wish I would have done more, I just trusted them but it was a big error.
Thank you for taking the time of helping me... in just two days everything has changed and now I have hope I can get things sorted. The help in this forum has been amazing.
OHH NO! Just notice that my brand aren't matching.. I am taking two tables from different brand! So I have 50mg from Accord and then 25mg from NorthStar. Would that be a problem in terms of absorption. The GP gives this to me and it is so annoying that they just supply carelessly. Also I hate that there are different brand every time. What would be the most recommended brand?
It seems that perhaps is Hashimoto because as you re saying high antibodies. I will also take on board the gluten free recommendation and testing.
I take daily Vitamin D, Krill Oil, Vitamin C, Folic acid, Pregnacare, DHEA 3x supplement and CQ10. Is that too much?
Which brand of levothyroxine are you currently taking
Many people find Levothyroxine brands are not interchangeable.
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Glenmark or Aristo (100mcg only) are lactose free and mannitol free. May be difficult to track down Glenmark, not been available very long
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Accord only make 50mcg and 100mcg tablets
Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord doesn’t make 25mcg tablets
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
Similarly if normally splitting your levothyroxine, take whole daily dose 24 hours before test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex
I'm really sorry to hear your story, These situations make me so angry with doctors, as you are working so hard to conceive, but by not treating your thyroid they are sabotaging your chances.
You have had great advice so far. The one thing I'm not sure has been mentioned is that being hypothyroid has a huge impact on fertility and pregnancy. It is very common to have repeated miscarriages when hypo, and it's hard to carry a baby to term.
Is it possible to cancel your November IVF cycle and take 6-12 months to get your thyroid treated optimally before trying again? It seems pointless to put yourself through all that difficulty when your thyroid status will be reducing your ability to carry the pregnancy to term.
Again, super angry with doctors that you've already had the best part of the year on thyroid treatment, but most of the time has been wasted because doctors know nothing and you haven't had optimal treatments.
I would suggest reading the forum regularly to get familiar with an optimal treatment, be prepared to get regular finger prick mail order blood tests, and see if you can find a doctor who will adjust your Levothyroxine dose every six weeks as is best practice. Ideally one who can prescribe T3/Liothyronine if you need it, too, which will become apparent once you've got the Levo dosed correctly. This is the second line of thyroid treatment, which doctors are much more reluctant to prescribe.
To give a little explanation of thyroid hormone and why it is so important to a pregnancy. Thyroid hormone is one of the chemicals cells in your body need to create energy, alongside the more well known things like food and oxygen. This means that thyroid hormone operates a bit like an instruction to the cells to make energy. Cells and organs then use this energy to do whatever they need to do, for your heart to beat, your legs to carry you around, your brain to access your memories, your digestion to work, etc, etc. For every thing your body does all day, large and small, every single cell and organ needs this instruction to make energy. If a cell doesn't receive it properly, then it can't make the energy it needs and will just sit there like a toy with a flat battery and not do its job.
When your thyroid is working properly, it will oversee all this perfectly and make sure your whole body has the correct amount of energy. If one day you go for a run, or you start gaining weight, or you get very cold, or you change your usual schedule and need a different amount of energy your thyroid will handle all that and adjust how much you get.
Once we're taking thyroid hormone in tablet from, we're completely dependant on how much we get in the tablets, and if our needs change one day to the next or even hour to the next, we just have to cope with what we've taken as a tablet.
Pregnancy is an enormous undertaking for the body, and your needs will be changing quickly as the baby grows. And every single complex thing your body is doing in order to conceive and grow the baby will need that thyroid hormone instruction to make the energy it needs to do it. The baby won't have its own thyroid at first, so it will be completely dependant on the thyroid hormone in your tablets, too. This is before even thinking about the fact thyroid hormone is a hormone, and because hormones are all linked it is intimately tied up with all the sex hormones which control the pregnancy, too. Which I don't know enough to talk about 🤣
Good luck in your journey. Members on the forum will be rooting for you to try to work with doctors, which I think is incredibly hard!
Yes, I am soo angry as they are honestly awful and clueless. It was TSH 3 in Nov 2020 (as part of the general check for conception) but as the lab flags as abnormal THS 5 or above, then the GP said it was all normal!! Only one year later it was flagged to me that the thyroid is important for conception grrr.
About the importance of thyroid function for pregnancy I said this to the fertility doctor at QEII in WGC she dismissed it and said that we are just here to talk about your fertility and the thyroid part is for another session with another doctor! This was in July when my TSH level was 1.02 so I thought it was all good so I didn't follow up much.
I am seeing a specialist in 2 weeks and thanks for flagging the challenges in pregnancy - he is an endocrinologist with a specialty in fertility and also thryoid, so fingers crossed that finally I will be helped. The thing is that I suppose to be fine when I started I was TSH 1.02, however, I think that the IVF drugs or ovulation trigger might have affected my thyroid as I went to 7.49 TSH! So, I am doing a couple more tests (full profile as recommended) this week and one in 2 weeks more, then from there, I will see if I can continue with the IVF.
Tho I'll admit I am not too optimistic. I think with thyroid the best you can hope for is to do the legwork yourself, and just hope you can find a doctor who you can persuade to follow your instruction. It really is that bad 😱
Anotger little point is that with thyroid everything is slow. The reason I mentioned six months in my earlier post is because that is the kind of timescale is can take from the moment you first start on Levothyroxine to get it dosed correctly, if you're having regular check ups and adjusting your dose every six weeks. That's if everything goes according to plan and if it is all done perfectly. If your case turns out to be more complicated (pr of course doctors are unhelpful which is really the norm) then it would take much longer.
You can really rush things like dose adjustments, and with thyroid hormone the important thing is to be on the ideal, personalised dose for you. Which takes several adjustments. It's not something you can take an off the shelf dose and expect to be fine.
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