Levo increase: So I was diagnosed in Aug 18 as... - Thyroid UK

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Levo increase

So I was diagnosed in Aug 18 as hypo, tsh was 14.4 and given 100mcg daily. Back at end of sept, level dropped to 0.41 so reduced levo to 100mcg alternated with 50mcg daily. Back in December to test again, tsh 4.46 so increased to 100mcg 5 days a week and 50mcg the other two days. Just had blood tested again and level was 4.12 so now he's put me on 100mcg alternating with 150mcg daily and back again in 3 weeks to test again.

My question is why did he reduce it in the first place? Why not have left me on the 100mcg? I'm concerned that the dose now may be too much given it had reduced down in a month on 100mcg so quickly. I'm in Germany.

Anyone else had similar? I have no idea of other levels or even if that is tested here. Language is still a bit of a barrier.

Thanks

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Your GP is changing dose by too big a variation

It needs very fine tuning. You can cut tablets and take 125mcg per day.

Bloods should be retested 6-8 weeks after each dose change (longer if dose was reduced)

3 weeks is too soon to retest

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

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I think he's increased it so much to get it back down as obviously other dose wasn't right hence the 3 week turnaround. I can only break the tablets i have in half. I did say to him that I felt better on the 100mcg daily when I started. I guess will just wait and see how it is when I go back unless I have any problems before then. He has a thyroid problem himself so I feel like he wants me to be right.

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Tablets cut easily with small craft knife

Essential to test vitamin levels and both thyroid antibodies

If antibodies are high strictly gluten free diet helps or is essential for many

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That's the trouble with the foolish reliance on TSH levels. 0.41 is probably under their official range so he reduced your Levo to bring it back to "Normal". Then (of course) it went a bit too high so he increased it again.

To his credit the doctor does seem to be trying hard to get you balanced, but not sure if he really knows what he's doing. Depending on TSH levels to adjust the dose, instead of T4 and T3 is a constant curse.

"now he's put me on 100mcg alternating with 150mcg daily and back again in 3 weeks to test again. "

Three weeks seems much too soon. It takes at least 6 weeks for your body to adjust to a change.

My Levo was decreased on 10th January from 100mcg/day to alternating days of 100/75. Which seems a much more manageable change. The problem is that I still FELT hypo on 100! But my TSH was 0.01 and T4 near top of the range, so they ASSUMED I was overmedicated, even though the T3 has never been tested. GRRRR!!! To be fair to the local medics, it seems that they are not allowed to, or the lab won't do it, except if you have a referral to an endo who can.

I'm going along with it because how else to convince them that the reduction won't work? Though I wish it might. I am grateful not to be put back down to 75 though. Your doctor seems to be quite wild by comparison!

Point is, how do you feel? Did any of the changes in Levo cause a change in that?

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SlowDragon replied while I was (even more slowly!) trying to compose my answer. Seems I was right in thinking that 3 weeks is too soon and the increase too much at one time.

But it's so good to know that the doctor also has a thyroid problem. Not that anyone would wish it on him, but at least he knows what you are going through! Together you can hopefully work out the proper solution.

Would he accept copies or links to research about TSH not being the best measuring device for thyroid levels? He would probably have access to professional online translation and be able to research it himself (and more importantly have the motivation because of his own condition). You might refer him to thyroid UK and someone like Dr Toft.

Any suggestions on articles, SlowDragon?

Can you take someone with you next time, who speaks better German? That might help too.

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At this stage I wouldn't risk upsetting him, by taking any articles in

But I would read up and learn everything myself

Good vitamins levels are essential. We need to test these regularly ourselves and often need to self supplement regularly

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I was feeling much better on the 100mcg and hubby commented that I looked better in myself and when that was reduced felt it was getting worse so wasn't surprised when he increased it in Dec but I still felt it wasn't optimal for me so I'm pleased he's increased it again even if it seems a bit wild. I think he was probably concerned at how quickly it dropped hence the initial reduction. On his screen it shows that it was within range at 0.41. He's not inciting on putting me on staying either as my cholesterol is high and he said it's linked to the thyroid.

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*Insisting on putting me on statins

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and I would refuse them. Your cholesterol will sort itself out when you're properly medicated for your hypothyroidism. Statins are not recommended.

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I would refuse them, I'm just grateful that he said no need for them at the moment because it's related to thyroid levels should get better once my meds are right. I've seen lots of people prescribed them and read the horror stories. It's nice to know he's informed enough to realise this as opposed to some of the stories on here i have read. X

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