Hi. I have a few things going on that I'm getting checked by the GP, but they keep refusing to check my T4 level so I have gone privately - thanks to advice on this forum. In the meantime, I'm trying to make sense of the data I do have. How widely should TSH vary in someone who has been taking the same dose (100 ug) of Levothyroxine for over a decade? I'm always in the normal range, so should I be happy with that?
Could my recent downtrend in TSH cause heart palpitations? I was subclinical when I was first diagnosed but put on Levothyroxine because I was trying to conceive. I guess a dose of 100 ug means I'm no longer subclinical? Any advice would be appreciated, even if the answer is no - this should not cause palpitations as I can then cross it off my list (don't get me started on trying to persuade the GP that the palpitations could be menopause related, I'm 44).
My last question - can I take Levothyroxine and beta blockers at the same time? I tried to take the beta blockers in the evening but the cardiologist told me off. I just keep forgetting to take the damn things if I leave it till 30 minutes after my Levothyroxine.
Thanks and apologies for the waffle.
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SwanOfBlack
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Just looking at that, without the benefit of FT4 levels or anything else, from Sept 2020 when your TSH went over 2.0 and upwards you were likely undermedicated. Ideally TSH should be closer to 1.0. Your last data point is much improved. I would not like to guess whether heart palps are due to this as I don't believe TSH is a good way to assess it. I'd want to see your FT3 levels. Certainly hypothyroidism affects the heart, but you need a full picture and that includes other nutrients as well.
Thanks Titaniumfox. My electrolyte levels are all fine. Vits D and B seem to be fine, but my iron levels are bordering on too high so I'm currently being tested for Haemochromatosis, though my follow up iron and ferritin were both normal (but iron still towards the high side). So, I've no idea why everything seems to be fluctuating so much. I was diagnosed as coeliac in March 2022, but my dose was not adjusted at all. I guess my TSH has come down as I am following a gluten-free diet. Thanks for your response.
I have to balance heart meds and thyroid meds. This is what I do. I have a seven day pill box, where each day can be removed if going out. I take my thyroid meds when I wake before getting up. By the time I'm up, washed dressed it's usually getting on for the hour, I thn take my other meds with my breakfast. So breakfast act as an aid memoir as does the pill box.Definately don't take beta blocker with thyroid meds.
Beta blockers are usually twice per day. Are yours only once per day then?
Also be wary of beta blockers and thyroid meds. Most work by lowering thyroid conversion rates of thyroid hormones. Some are worse than others. I can't take them. They make me very ill.
Thanks wavelines. Your idea of a pill box is a good one and I might just do that so I can take my beta blockers at work. I am on the lowest dose of beta blockers - I think to shut me up, so I only have to take them once a day (Cardicor). I'm trying to work out whether or not I actually 'need' to take them so this is part of that process. Thanks for getting back to me.
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Testing options and includes money off codes for private testing
Hi SlowDragon - wow, that's a lot of information. It'll take me a while to study all this, but it is appreciated. I have ordered a full thyroid function test and will take your advice re when to take levothyroxine etc. My vitamin levels appear fine, apart from iron which is slightly too high and I'm being tested for haemochromatosis. My most recent iron levels came back within normal range and I'm just waiting (potentially weeks) for my PCR result. Thanks again for all of this info!
Are your blood draws all done at the same time of day? It should be pretty stable if the tests are done correctly and always done at the same time of day.
TSH doesn't cause, or make you feel, anything. It is low FT3 that causes symptoms. And, as they don't even test your FT4, you can have absolutely no idea of your FT3 level.
I was subclinical when I was first diagnosed but put on Levothyroxine because I was trying to conceive. I guess a dose of 100 ug means I'm no longer subclinical?
No, that's not how it works. Levo - thyroid hormone replacement - doesn't 'top up' your thyroid hormones, it gradually replaces them. Taking THR reduces you TSH to the point where the thyroid stops producing hormone altogether. You then have to take enough THR to replace what your thyroid would have made had it been healthy. So, you are entirely reliant of exogenous hormone. But, to be well, you need to take enough of it. My guess is that, on only 100 mcg levo, you are under-medicated. But, you cannot know unless the right tests are done.
(don't get me started on trying to persuade the GP that the palpitations could be menopause related, I'm 44)
Oh! Don't encourage him! GPs like to put all hypo symptoms down to menopause, anyway, whatever your age! lol And palps are a symptom of under-medication.
Beta-blockers, and all other medications, should be taken at least two hours away from levo.
Hi greygoose - these tests are pretty much all done before 8:30 in the morning. I only found out fairly recently (thanks to this forum) that you shouldn't take levothyroxine before your blood test so only the last two tests were done without taking my morning medication until after the blood test.
Okay, I will wait until I get the thyroid function test results back before pestering about menopause. I have not had the same experience with you, as they seem very wary about saying I could be peri-menopausal full stop. Perhaps that does mean they are taking my symptoms seriously.
I will try and take my beta-blockers 2 hours after my levothyroxine. I did mention this to my cardiologist, but he was adamant I take it in the morning so it could do it's job. He thought that because I was on the lowest dose it wouldn't affect the Levothyroxine.
Well, taking the levo before the blood draw won't affect the TSH, anyway. It doesn't move that fast. It would only affect the FT4, and they don't even test that!
Actually, it's not my experience that they blame everything on the menopause. But then, I live in France and am not restricted by the NHS and NICE. It's just from reading on here that I see they always want to blame symptoms on it. Or anything and everything else except hypo! But, I have been told that my symptoms 'have nothing to do with your thyroid'. Which must be once of the silliest responses in their repertoire because anything and everything can be a hypo symptom!
He thought that because I was on the lowest dose it wouldn't affect the Levothyroxine.
Just about everything affects levo. It's a 'very fussy' hormone, as Slowdragon would say.
Good Morning SwanOfBlack - I see that you are having difficulties in getting an NHS T4 test - I have a very good GP and he always asks for a TSH and T4 test - and in the main we are lucky in getting both of these results - but despite this, sometimes the laboratory refuses to test for the T4. If this is the case I refuse to make any changes to my Thyroxine without the TSH and T4 results - I always ask for a T3 as well - but I think that this has to be requested by a consultant and not a GP ? I know it is very difficult but I hope this might help.
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Are my doctor and Endo correct that my TSH being suppressed is not good and I should lower my levothyroxine!!
What should I do !!! , feeling terrible on thyroid meds 
What should optimum TSH level be?
Has anyone had palpitations with a high TSH level? 
