Good morning, I'm new to this group and to hpothroidism. Basically I have lung cancer being treated with chemo and immunotherapy since last October. Two day after my last dose (5th) of both on 21 December I started feeling very unwell - more so than previous treatments, mainly extremely depressed and exhausted. This got worse during the rest of Dec and January/February. I had a thyroid blood test start of Feb, which was 17 so was put on Levothyroxine 25mcg a day. I steadily felt worse.
Another blood test a week later, and feeling worse not better, said 52, so Levo increased to 50mcg a day. Still no improvement, with nausea now after taking the tablet. Then it went to 56 - feeling dreadful. Can barely climb stairs to bed nor get out of bed, and my oncologist almost admitted me for intravenous thyroxin. But he consulted an endocrinologist who advised to increase the tablet dose.
Last week it came down to 52 again and now on 100mcg Levothyroxin a day. All blod tests since the first one have been taken after I've had my morning tablet (no one's told me otherwise).
My question is, should I be feeling better by now on 100mcg a day? I see the oncologist again on Monday 28 Feb, with bloods being taken just before I see him. Any advice appreciated.
Written by
Gingerjam
To view profiles and participate in discussions please or .
Hi Gingerjam, welcome to the forum - love that ginger jam! We're very keen on ginger on here.
Rather doubtful that you would feel better on just 100 mcg levo, especially with such a high TSH. Not that TSH itself causes symptoms, it's not a thyroid hormone, but it indicates that your thyroid hormones level are still pretty low. And until they rise - especially the T3 - you will continue to feel bad.
The dose should be increased by 25 mcg every six weeks, after retesting, until your symptoms are going. Best to get an early morning appointment for the blood draw - before 9 am - fast over-night, and leave a 24 hour gap between your last dose and the blood draw.
Is TSH all they've been testing? That's not a serious problem for the moment - although it would be a good idea for them to test at least FT4 to make sure it corresponds to the TSH - but when the TSH gets down to about 1, then you should have full thyroid testing:
Hi Greygoose,Thank you for your helpful reply. What would make me feel better if just the Levo won't? I'm totally exhausted and get breathless with the smallest exertion (not the cancer causing this) with legs of lead. Sleeping a lot as too tired to do anything else - and that is not like me at all. Was very active prior to this thyroid thing.
I will tell the oncologist (who is monitoring my bloods) what you suggest testing-wise: he reckons the hypo has been brought on by my immunotherapy, which can happen although he says it's rare and he's not seen it before.
I'm bored too, with swollen face, eyes and hands (left hand worse), and also getting numb/tingly arms.
What would make me feel better if just the Levo won't?
Well, we don't know yet if just the levo won't. You're not on a high enough dose yet. When your TSH gets down to around 1, and you get your FT4 and FT3 tested, then we'll have a better idea of what is going on and what you need. At the moment you feel bad because you're under-medicated, so it's too soon to think about anything else.
Impossible to tell. No-one knows what dose they should be on when they start out. That's why we start low and increase slowly - which is the way all hormones should be approached.
With T4, that means starting on 50 mcg, normally, and increasing by 25 mcg every six weeks until you hit your sweet-spot. But no-one can guess what dose that future sweet-spot might be.
Which brand of levothyroxine are you currently taking
Have you always had same brand at each prescription
Thyroid levels should be retested 6-8 weeks after each dose change or brand change in levothyroxine
Always test early morning, ideally before 9am and last dose levothyroxine 24 hours before test
Meanwhile request GP test thyroid antibodies, vitamin D, folate, ferritin and B12 NOW
On levothyroxine we need OPTIMAL vitamin levels
Extremely common to have very low vitamin levels if not regularly testing and supplementing
Being hypothyroid frequently causes low stomach acid to develop, this leads to poor nutrient absorption and low vitamin levels as direct result
Are you currently taking any other medications or vitamin supplements
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
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
Hello SlowDragon, thank you for your helpful reply. The brand of Levothyroxin is Accord, dispensed by the hospital.
My blood test will be around lunchtime at the hospital on Monday. My GP has not been doing the blood tests - the oncologist had requested then as the ENT department was investigating a large goitre and nodules on my thyroid gland (ignored by my GP for several years, who did do thyroid tests but said they were normal). The oncologist is of the opinion that the immunotherapy treatment I've had has caused the hypothyroidism, and said my thyroid levels were ok (my average was 1, whatever that means) prior to treatment for cancer.
If I want to now take the Levothyroxin tablet in the evening should I just not take it in the morning (as I'd been told to do) tomorrow and have it in the evening instead?
I have bloods done every 21 days when having cancer treatment so surely the vitamin levels would show on the results? But I will ask the oncologist if those are being done now, along with the tests you mention.
I will have to check if results are there online - I don't have recent printouts (last one was at last chemo session on 21 Dec). But too exhausted today to do that. I wouldn't know what the vitamin levels should be anyway, even if they are there. Like I said, I'm new to this, so sorry for sounding a bit numb and asking so many questions. What is TSH? And what should vitamin levels be?
I was started on Levothyroxine three weeks ago (25mcg), then a week later upped to 50mcg, then a week later up to 100mcg.
TSH is the message from pituitary to tell thyroid to work …..the higher TSH is (in theory) the more hypothyroid the patient is.
However often with autoimmune thyroid disease TSH doesn’t respond as it should and low vitamin levels (especially ferritin, vitamin D, folate or B12) will tend to lower TSH
You say you were anaemic….this will result in low ferritin
….any obvious cause for low ferritin?
Eg vegetarian or vegan
Or heavy periods?
Low ferritin is frequently linked to low thyroid levels
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Sounds like you might have had thyroid issues before chemo treatments
Autoimmune thyroid disease frequently runs in families
If left hypothyroid a long time and vitamin levels drop low this often results in lower TSH ….
it's possible I already had hypo, as I've had this goiter for at least seven years and often felt not quite right with bloating, extreme tiredness, dry skin, weight gain despite watching what I eat, then gallbladder and cervical spine issues, and wondered if it was down to hypo, as my mother has it and sister has similar symptoms. But GP said no, the test was normal (I was tested a couple of times over that seven-year period, but was told I had anaemia).
Frequently GP only tests TSH …..this is completely inadequate
Low vitamin D is extremely common with autoimmune hypothyroid
the oncologist had requested then as the ENT department was investigating a large goitre and nodules on my thyroid gland (ignored by my GP for several years, who did do thyroid tests but said they were normal). The oncologist is of the opinion that the immunotherapy treatment I've had has caused the hypothyroidism, and said my thyroid levels were ok (my average was 1, whatever that means) prior to treatment for cancer.
Well, that sounds a bit messed up! If you had a goitre and nodules several years before the cancer diagnosis, then it does suggest that you already had hypothyroidism - possibly Immune thyroiditis - have you had antibodies tested? So, whilst the cancer treatment may have aggravated it, it's rather doubtful it caused is.
Thank you.That's uncanny you say that it's possible I already had hypo, as I've had this goiter for at least seven years and often felt not quite right with bloating, extreme tiredness, dry skin, weight gain despite watching what I eat, then gallbladder and cervical spine issues, and wondered if it was down to hypo, as my mother has it and sister has similar symptoms. But GP said no, the test was normal (I was tested a couple of times over that seven-year period, but was told I had anaemia).
I, too, was sure I had hypo prior to the cancer treatment and that the immunotherapy had aggravated it and mentioned this to the oncologist, but he said that my thyroid level was fine (1) before cancer treatment started. So I just don't know.
And, if you have Hashi's - autoimmune thyroiditis - it's perfectly possible that your TSH was 1 before cancer treatment, because with Hashi's, levels swing between hypo and false 'hyper', passing through 'normal' on the way. How many times did he test it? You cannot possibly judge thyroid status based on one TSH test.
Also, Hashi's runs in families - although you can have it without any family history of thyroid problems, but it often happens that if mother and daughter are both hypo, then they have Hashi's. So, what you want now is your antibodies tested. The NHS will only test TPO antibodies - and they make a fuss about that! But, privately you could get TPO and Tg antibodies tested.
Ps Interestingly, there were no stones or sludge in the gallbladder or bile duct when it was removed, but the surgeon said it was inflamed. Prior to that, all tests on the gallbladder - ultrasound etc didn't show anything wrong. A gastro consultant said my symptoms were due to constipation! Constipation was certainly an issue, mainly due to all the painkillers I was on, including morphine.
It was only after I'd joined a gallbladder forum, and also discovered the GutsUK website, to glean information that I found out about a HIDA scan, so I requested one and lo and behold my gallbladder function was zero - no wonder I was in agony. All of this took 18 months to resolve - mainly because I pushed and pushed my GP for tests.
So self-education, with the help of people on forums such as this, is essential to help maintain your own wellbeing. You do such a good job: thank you all.
even if you were put straight on to the right dose for you.. (which is virtually impossible because it takes weeks for the body to adjust to the dose, then you need to see the blood results of that dose after 6 weeks ,and then do some fine adjustment, usually more than once) ....
But even if by some fluke you were put on exactly the right does 3 weeks ago .. it is just way too soon to expect to feel sorted /better just yet.
Up to at least week 5 (i now realise) we can still expect to feel 'all sorts' that will not necessarily be how we will feel once our body has acclimatised to that dose .
Thyroid treatment goes in blocks of 'minimum 6 weeks dose change /adjustment'.. and unfortunately it has to be that way.. it's very tedious.. and requires patience.
An understanding of how complex the TSH regulating system is will help you with the waiting part .. so do as much reading on here and on ThyroidUK 's home site as you can manage.. and use the time to learn as much as you can .. we all need to have as good an understanding as possible if we are to get the best treatment for our thyroid.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
NHS not testing blood correctly
? Correct Levo dosage
Correct TSH for a 'senior' (60+)?
Armour dosage correct?
Is there a correct ratio of levothyroxine to liothyronine?
