Advice on levothyroxine dose, supplements and possible T3 addition
I’m looking for some guidance/advice on a few issues if possible as feeling pretty lost and a bit overwhelmed on what to do next. I’ve been reading a lot of posts and information on here for a few months since joining and finally plucked up the courage to post in the hope it may help a little.
My brief history :
2019-2020 three miscarriages in eight months
Sept 2019 diagnosed with classical PTC
Oct 2019 TT, central and bi-lateral neck dissection, 8/46 lymph nodes positive
RAIA treatment Dec 2019
Whole body RI scan June 2020-normal
USS neck Aug 2020-normal
Had levothyroxine changed five times since original prescription of 150mcg a day after operation in October 2019. 150 daily was too high, 100 too low, tried 125 three times a week but this did not suppress TSH levels enough, went up to 125 daily beginning of July 2020.
The bloods tests below show when I was on 125mcg daily:
4th August 2020 (done by gp)
TSH 0.10mu/L (0.30-5.50)
Serum free T3 3.8 pmol/L (3.1-7.0)
Serum free T4 25.9 pmol/L (11.5-22.7)
29th September 2020 (done by nuclear medicine, six monthly tests by them)
TSH 0.11 mu/l
Free T4 30.1 pmol/L
Serum thyroglobulin <0.1 ug/L
No abnormal thyroglobulin antibodies
They did not do a free T3 reading
Mid November so seven weeks ago I dropped my levothyroxine on two days to 100mcg, 125mcg on the remaining five days. I have not had bloods tested since this change. I explain why this drop later on in post.
From reading the posts I know it is important to test B12, folate, ferritin and vitamin D. I have never been offered any of these when testing thyroid issues. I did have full blood tests done at my gp’s on the 6th of October as I was having a few different symptoms for example pins and needles, developed tinnitus, vision feeling strange sometimes, heart beating hard sometimes especially after eating,dizziness, general body aches and pains etc. There were a lot of results the ones I thought maybe useful are:
Serum B12 357 ng/L (223-1132)
Serum Folate 6.6 ug/L (3.9-20.0)
Haemoglobin 124 g/L (112-148)
Haematocrit 0.369 ratio (0.340-0.450)
I couldn’t find a result for vitamin D or ferritin unless they might be called something else on the results? There are loads of other results, not sure whether they would be helpful to post them all or not. The doctors said all within range no treatment needed and so weren’t very helpful.
I hadn’t been taking any vitamin supplements as was told they can interfere with my thyroid medication, but I asked the nuclear medicine consultant(who I am under for my follow up care) about this at the end of September when I saw him for my blood tests. He said you can take them but not at the same time as levthyroxine. Again I have read up on this site about when to take levothyroxine and other medications. I take my levothyroxine first thing in the morning and don’t eat for an hour after and I have been taking some multivitamins, b complex, calcium and vitamin D tablets at night, but these were only cheap shop bought ones so probably aren’t worth it. I have read on here the B12 sublingual and B complex recommendations and will probably purchase some.
I have always thought I don’t agree with levothyroxine very well as I haven’t felt well or normal ever since my operation really. I have spoke to nuclear medicine a few times and they said they want to suppress me for at least a year minimum but would consider a trial of T3 as a combination or solely if it is something I would like to try. I have different brands of levothyroxine prescribed all the time, not really noticed feeling better on one than another and not sure how my gp will react if ask for only one brand and what reason would I give for this.
Another factor I have to consider is trying to conceive and this has made it even more confusing for me lately. We were told not to try to conceive for a year after RAI treatment. In November 2020 we picked up with the consultant obstetrician and gynaecologist as it had been a year, she was lovely and happy to hear I had the all clear from thyroid cancer and treatment went well, but she did say while my T4 was 30.1 that I was unlikely to conceive as this was a high. Coupled with all the symptoms I had been getting she said to speak to nuclear medicine about reducing my dose slightly, which is why I reduced it by two days to 100mcg, even if it came down to around 25 she said this would be much better. I have contacted the lady I speak to at nuclear medicine about this, she got a message to me last week to say she was isolating now but would get back to me, she is usually really helpful. The consultant also contacted a lady who is also one of the obstetricians who specialises in endocrine medicine in regards to taking T3 or T4 when trying to conceive or in pregnancy. That lady came back and said they usually only prescribe levothyroxine in pregnancy as it freely crosses the placenta, where T3 may not have the same effect. She advised to continue with levothyroxine whilst trying to conceive and to monitor my thyroid function tests closely. Then yesterday I had an appointment with another consultant gynaecologist (from the same department)about some test results and going forward from here. She was more concerned about me feeling well, that’s the most important thing so she actually advised to try T3 or at least a combination of it with T4 and if I became pregnant as we would know early they would up my levothyroxine intake.
I just feel so confused as where to go from here, what to do for the best and even who to ask. I feel like it’s a constant battle between nuclear medicine who want me suppressed, the gp who want me in the normal range and me who just wants to feel ok, with a slight chance of maybe conceiving.
I am so sorry for the long rambling post but I am just hoping for some help to feel a bit better. I have tried to include anything that maybe relevant, that’s why the post is so long . I guess the main things I am asking are
1. Do I ask for more blood tests? If so on what grounds? If they say no do I pay for them privately? (I am aware of the options and discounts through this group)
2. Do I need to take any supplements? If so which are recommended please? (I have seen recommendations for b12 sublingual and B complexes including folate but not for vitamin D or ferratin)
3. With regards to T3 combination trial or taking only T3 is this worth exploring in my situation?
Thank you so much for reading and for any help you might be able to offer.
Written by
rosegold-rockchick
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A lot to consider, here, but basically, the reason you're not feeling well - and why you feel levo doesn't agree with you - is that you are a poor converter.
I don't know how much you know about thyroid, and don't want to come across as patronising, but levo is the thyroid hormone T4, which is a storage hormone that has to be converted into T3, the active hormone. T3 is needed by every single cell in your body to function correctly. Your FT3 - which is the measure of how much T3 you have available for use by your body - is very low. And, it's low T3 that causes symptoms. Your FT4, on the other hand, is very high. They should be about equal, with the FT3 slightly lower in-range - percentage-wise - than the FT4. So, that's what shows you are a poor converter.
That lady came back and said they usually only prescribe levothyroxine in pregnancy as it freely crosses the placenta, where T3 may not have the same effect.
And, she is probably right - at least, that is what is believed but I think the jury is still out on that one. But, what she is ignoring is that to conceive and carry a baby to full-term, you need a healthy mother. And, if the mother has very low levels of T3, she's not going to be healthy enough to do that. So, it's not just about the baby, it's about the mother, too. And, the mother needs healthy levels of FT3 whether it crosses the blood/placenta barrier or not.
So, it's my personal opinion that T4+T3 would be a good idea for you, and the baby. Probably not T3 only, that doesn't sound like a good idea at this point, but you definitely do need some T3 for your own well-being.
I'm sure someone will be along to talk about nutrients soon. I'm not very good at those.
Thank you so much for your reply and it’s not patronising at all. I basically knew everything you said but it’s good to have it explained in more detail. My t4 is high as nuclear medicine run me high on levothyroxine to suppress my TSH to lessen the chance of thyroid cancer returning.
The gynaecologist said to try and reduce levothyroxine a bit and see if we could reduce t4 even a bit to be at the upper end of the normal range as this would make a difference.
The lady endocrinologist who came back and said about t3 not crossing the placenta did say there are minimal studies of t3 in pregnancy, so agreeing with you on the jury is still out. The lady yesterday another gynaecologist in the fertility department was much more focused on my well being and that was the most important thing to her, so I will chase up nuclear medicine about maybe trialling a combination of t3 alongside t4. If I get nowhere with them I may enquire about seeing a private endocrinologist as I have thought about this a few times to see if it may help.
Thanks again for the information, I can’t wait to hopefully feel slightly better at some point soon.
The gynaecologist said to try and reduce levothyroxine a bit and see if we could reduce t4 even a bit to be at the upper end of the normal range as this would make a difference.
I'm afraid your gynaecologist doesn't understand thyroid very well. The difference it would make is that your FT3 would be even lower. I'm not quite sure of her thinking there, but I think she's barking up the wrong tree.
Reduce levo and add in some T3, yes. That would work. But just reducing levo on its own isn't going to cut it, I'm afraid.
Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)
Or Thorne Basic B is another option that contain folate, but is large capsule
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
With such low B12 result taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
Ok thank you. The differences I can see between Medichecks and the Blue Horizon thyroid premium gold tests are the blue horizon test for c reactive protein, cortisol and magnesium for £60. Are these worth paying the extra amount for or not please?
No I don’t feel better in the morning, just feel pretty rubbish all the time really. I’ll just go with medichecks for now then, thank you so much for the advice 😊
sorry i have no advice, but just wanted to say hi,👋 rearly hope you get your meds sorted so you feel better, to go further with your pregnancy plans. best wishes for you
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