Advice on levothyroxine, supplements and possible T3 addition after thyroid cancer and treatment

[rosegold-rockchick]

Advice on levothyroxine dose, supplements and possible T3 addition after thyroid cancer and treatment

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, I have posted this in the ops in thyroid uk group as well.

[rosegold-rockchick]

Thank you Scrumbler for the information. Do you take t3 on it’s own or combined?

I’ve realised we have to fight our own corners regarding thyroid care. I am seriously considering paying to see a private endocrinologist.

I am not being looked after by an oncologist or endocrinologist, never had one or been referred to one. I have raised this and said doesn’t seem to be much aftercare with what I have been through. They have said the nuclear medicine department is who I am under for follow up care, the lady I usually speak to there a coming back me , she was isolating last week. So I think I’ll call next week if haven’t heard back as she is usually really good and has said in the past they would look at t3 if it is something that I wanted to try, so I guess I have to push this now.

I wish you well too.

[rosegold-rockchick in reply to rosegold-rockchick]

Sorry I forgot to ask why do you say not to take folate before raising my B12 please?

[rosegold-rockchick]

Ok re the vitamins thank you.

I know that’s what I have thought about aftercare. I spoke to the butterfly trust nurse (charity set up just for thyroid cancer patients) and she got in touch with her colleagues here who are thyroid nurses and they said they way it’s done here is by nuclear. So although nuclear are trying to be helpful they aren’t thyroid specialists as you say. I will pm you where I have had my treatment but I am seriously considering asking gp for a referral to an endocrinologist or paying for a private one myself, but shouldn’t have to really.

[Nanaedake in reply to rosegold-rockchick]

I didn't get much help from 2 Endocrinologist. If you do visit one make sure it's a thyroid specialist, most are diabetes specialists. If their online profile says they have an 'interest' in thyroid that is not the same as being a thyroid specialist.

[rosegold-rockchick]

My two most recent bloods I posted in my original post otherwise it would be older ones

[Nanaedake]

Definitely ask for vitamin D to be tested. It's important that you maintain good calcium levels. Have you lost parathyroid glands? Ask the GP for a copy of the pathology report and find out. If you have darker skin, work indoors without light, never go abroad for sunshine holidays you could have reduced vitamin D levels so these could provide a reason to test combined with your TT history.

Switching brands of levo is not a good plan. Stick to one brand. It's something to discuss with pharmacist. GP will probably not be interested. If you get your tablets from a GP dispensary, you might have to go to a pharmacy instead if you want to stick to one brand.

An FT4 of 30 or more seems rather high. I did not feel well when mine was this high with suppressed TSH. However, it's very unhelpful that they did not test FT3. I have no idea what my FT3 was as they didn't test mine either.

There's little point in taking multivitamins. Better to take vitamins for things you actually need.

If you can't get doc to test vit D you can get it done via City Assays in Birmingham lab. It costs about £30.

If the hospital are offering T3 as well as Levothyroxine then you could give it a try. However, you still need to check vitamin D and calcium levels. You will only know how much vitamin D to take when you know what your current levels are. It's safe to take 400iu of vit D3 daily in the meantime before arranging a test because that's what the NHS recommends for everyone in the winter.

I agree that aftercare for thyroid cancer is rubbish.

[rosegold-rockchick in reply to Nanaedake]

Thank you Nanaedake for your reply and the information.

I am getting all the bloods needed including vitamin d next week at my gp's. I did have my parathyroid glands removed and have had calcium tested throughout the last year and that is always been ok, so I have been lucky on that front.

Ft3 is being tested again next week so we shall see what these blood tests show and I am going to speak to them about supplementing with t3 if possible.

If I have to go to a thyroid specialist in the end I will make sure they are a specialist. I will make sure it is somebody recommended off here probably.

I will also speak to the pharmacy and ask for just one brand of levothyroxine to be given to me in future, thank you 😊