I would really appreciate your advice on my recent blood tests, as my doctor doesn't even know how to interpret them and I feel so alone! I have hashimotos (tpo 237 (0-6) and thyroglobulin 70 (>30) and after finally convincing my doctor to treat me, he started me on 50mcg of levo.
When I had my blood test before going on levo the nurse took it after I had eaten breakfast at 9.45 in the morning (I was seeing her about something else and she said "Oh, I see you are due your 6 month thyroid blood test, so I'll just take it now...). I didn't want her to take it then, but kind of felt I had no choice. So, when my doctor started me on levo (50mcg) my TSH was 4.05, ft4 16.
Anyway, fast forward to 8 weeks later and I just found out that my TSH is now 5.22, ft4 is 15.5! This is a shock to me, because although I haven't felt much of a difference energy wise on 50mcg of levo, I still would have thought that my TSH would have gone down?! My doctor was baffled and didn't know what to do! He then decided to put me on 100mcg of levo and come back in 4 weeks to see if that lowers my TSH. He actually said at one point, "it's not making a difference" and my heart went cold in my chest because I thought that he would take me off levo completely! I tried to explain to him that maybe the autoimmune process had accelerated... To be honest I was desperately trying to think of something to say that would convince him not to take me off meds. The question that I'd like to ask you guys is.... what's happening? Thanks so much for taking the time to read this post.
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momo33
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Well, you could have been right, it could be that further damage has been done, or it's just the normal variations in the TSH.
Did you have the second blood test earlier than the first? Had you also eaten or were you fasting. The TSH is higher early in the morning, and lower after we've eaten.
But, whatever the reason, you did need an increase in levo - just not an increase of 50 mcg! That is probably going to be too much for you. Increases should be no more that 25 mcg at a time, if you don't want to stress the body. And four weeks is too soon to test, it should be at least 6 weeks after the increase.
Does he test anything else other than the TSH? Because once the TSH hits one, it is no-longer going to be of any use in dosing. He should at least do the FT4, but FT3 would be better.
Next time you have a test, ask him to do the vit D, vit B12, folate and ferritin. Arrange your test for as early as possible - before 9.0 am - and fast over-night - just drink water. And leave a 24 hour gap between your last dose of levo and the test.
Hi greygoose. Thanks for your reply! I had the second blood test an hour earlier than the first (at 8.45) on an empty stomach and with 24 hours between my last dose of levo (50mcg).
If 100mcg is too much for me then what should I do? The problem as well is that I am on Almus (Actavis) as that brand reallt suits me and I don't think they do 25mcg tablets... Don't know what to do! I could ask the doctor is 4 weeks if I could come back again in another couple of weeks for another test to give the levo more time to work I guess...He only asked me to het TSH done and freee T4 (which was 5.55 and 15.5) on 50mcg of levo for 8 weeks. He says that the lab won't test free T3.... Ah, I don't know what to do
Well, you could cut it, certainly. That's what I would do, cut it in half, take 75 for 6 weeks, and then go back for a test. Odds are he will probably have forgotten by then that he said four weeks. If he questions it, just say something like, oh, did you say four? I thought you said six, because that's normally the time you leave before testing. lol
So, that would probably account for the difference in the TSH - one hour earlier, and fasting! But doctors don't know anything about that, I'm afraid! And neither do nurses. So, next time she wants to take your blood for the TSH as some late hour, just say no. You are not legally requited to say yes.
My weight has balooned over the last few years without treatment. I am now at least a size 20.... Do you think that weight could affect how much levo I need? Maybe heavier people need a higher dosage?
That's never been proved. But what does it matter, anyway. You need what you need. And the idea of thyroid hormone replacement is that you continue to increase the dose until all the symptoms are gone - including weight gain. At the moment, you are simply under-medicated.
Thanks. I will ask for those tests you listed as well. I think that when my doctor tested me for nutritional deficiencies a year and a half ago, it was ferratin that was low. Since then I have been taking iron supplements religiously every day (but not with my thyroid meds).
You can take 50mcg one day and 100mcg the next ...then this evens out as 75mcg daily. Many find that this can be better than cutting up tiny tablets and then some going missing as dust! Or they don't break into even halves.
Get a weekly pill dispenser and fill it up ....then you won't need to remember which you took yesterday
It doesn't really matter about the uneven halves where T4 is concerned, because it's a storage hormone, and it levels out over the week. But, if you were cutting T3 tablets, then yes, it would matter.
Greygoose, do you think that 100mcg of levo would make me hyperthyroid? I know you said it puts a stress on the body to go from 50 to 100mcg- is that what you meant or just a general feeling of unwellness, etc?
No, I don't think 100 mcg increase would make you 'hyper' (over-medicated). But if you stress your body, you will feel just generally unwell, or even anxious.
That's an idea... To be honest, I'd worry about explaining this to my doctor. Do you think there's a chance that 100mcg could make me develop hyperthyroid symptoms? So confusing!
Read up on how going gluten free often helps us if we have hashimoto's.
You may well have low vitamin D, B12, folate and ferratin.
As Greygoose says - get your GP to test all these next time. They need to be at very good (not just average) levels for thyroxine to work.
A test for coeliac too is good idea, especially before trying gluten free diet. Many with hashimoto's seem to have leaky gut, but by avoiding totally 100% all gluten, many find this can help reduce symptoms and lower antibodies.
thanks. Last time he checked (over a year ago) ferratin was low but I have been supplementing. Lose a lot of monthly blood too, which is a problem,but I have been told that I'm not anaemic.... Yes, GF diet sounds like a good idea.
momo33 Good advice already given. One tip for refusing a thyroid test when they drop one on you, and it's one I now use having had the same done to me. I just say "No, I don't want my thyroid test now. I prefer that to be done first thing in the morning so I'll make another appointment". Hard to do the first time, very easy after you've done it once. My nurse just goes "Oh, OK" and leaves it at that.
Thanks. I suppose I kind of got caught off guard! I wasn't expecting her to suggest it and hadn't really prepared to be faced with the question. Next time, though, I'll say that I prefer it to be done earlier in the morning. Thanks for the links!
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