Struggling with levothyroxine

[toonarmy]

Hi I'm new to this site, I've just been diagnosed with under active thyroid, I was on 25mcg every other day was OK for two weeks, then symptoms started to come back so upped it to 25mcg every day, this is day 2 and I feel very anxious and out of it , why would I feel like this anyone got any ideas?

[Hidden]

Hi toonarmy,

It's just the hormones hitting your system. When you're hypothyroid your body has spent quite a long time with very little metabolism. Adding in the hormone albeit a very small amount is a bit of a shock to the system. I too am very sensitive to thyroxine.

Your body will adjust but you may have a bumpy few weeks where you feel worse before you start feeling better.

I can assure that that is what most of us here have experienced.

Stick with it because it will start to make a difference but don't be surprised if your GP increases your dose at your next blood check.

[Jan248]

Hi, sorry that you have ended up with this condition too 😔, I wouldn't mess with the dosage by myself to be honest. If it was me I would go back to my GP to ask his advice. If you are on Facebook there are a couple of good sites on there which offer invaluable advice. Couple of tips, keep your medicines in a cool place but not necessarily the fridge and also take your meds on a empty stomach and avoid milk for about an hour so that it can be absorbed. Best of luck x

[Jan248 in reply to Jan248]

Also now you have been diagnosed you no longer have to pay for prescriptions as its a life long condition, speak to your surgery they can advise on how to get an exemption certificate x

[Musicmonkey]

Maybe a good idea to adjust to the 25mcg over 6 weeks, then up the dose to 50mcg if you are still feeling rough. It does take several weeks to adjust to a change.

[toonarmy]

Thanks everyone for your advice I'm very grateful to know that I'm not going mad, it's just the hormones kicking in, il go back to what the doc advised and take 25mcg every other day till my next Dr's appointment and blood tests xx

[Joburton]

Late last year I was diagnosed and started on 25mcg daily and also found I felt worse on each dose increase after the first fortnight. Following 6-8 weekly blood tests I was gradually able to work up to 75mcg and now actually starting to feel better. Still more fatigued than I should be, but aches and pains and brain fog are easing. I feel more like myself than I have in years!

It's a gradual process, but worth persevering. I also found it helped to take B12, Vit D, gentle iron and folate as advised by this forum (all my levels were low in range).

[greygoose in reply to Joburton]

Do not take vit B12, folate, vit D, or iron without first getting tested, toonarmy. You need to know if you need it and if so, how much.

[Rachel_81]

Hi!

Just to give you an example, I started off with 25mcg and felt very strange, my dose was slowly increased based on symptoms and blood work (every 6 weeks) and about 10 months later was on 112mcg T4 and 25 mcg T3, and for now my final increase (may need to be adjusted in the future).

Basically your body needs to adapt to each new dose, you may feel strange but it should improve, for me it would take a week or two but I bet everyone is different. The biggest adaptation was when my doctor added 25mcg but in 2 weeks was feeling great. It is well worth putting up with the palpitations, sweating, headaches or whatever happens because you will feel so much better after. A week after adding T3 my heart started racing, I was lying on the sofa and had over 100 beats a minute, a bit scary but I knew from the forums that this could happen, it is now settled at about 75 which used to be my normal (as a teenager had anything between 75/80, and when hypothyroid was always under 60.

So, please don't be scared, you may feel panicky if your heart rate increases, it almost feels like a mild panic attack, but tell yourself this is normal, it will settle.

Good luck!

[greygoose]

Hi, welcome to the forum - but sorry you need to be here! DId the doctor say why he was starting you on such an unusually low dose? Starting doses are normally 50 mcg a day. It's very possible to feel worse rather than better if the dose is too low.

[Hidden in reply to greygoose]

My gp started me off on 25mcg daily, and won't allow me to increase the dose, despite my numbers still being "out of range". To be fair, I haven't been back to discuss it with him, and I haven't felt any real change in how I'm feeling, so I really ought to do that.

Just thought I'd put it out there that it seems starting on 25 mcg isn't that uncommon - although I find the advice to take one every other day a bit odd. Presumably OP's numbers were considered "borderline"?

[greygoose in reply to Hidden]

No, I know it's not uncommon! More's the pity. But it's likely to make people feel worse than they were before they started because it's just too low.

How long have you been on 25 mcg? If it's longer than 6 weeks and your doctor won't 'let' you increase, then I'd either advise changing your doctor or self-treating. That just isn't right.

[Hidden in reply to greygoose]

I was diagnosed by my new doctor in September, so, since then. But that's not the interesting part: My previous doctor apparently knew for more than 3 years that my thyroid results were way off, and chose not to treat me, telling me it was all normal. Obviously I now know better than to just accept that and these days for all tests, I ask for specific numbers.

[greygoose in reply to Hidden]

Good for you! Honestly! They get aways with murder, Don't they!

Even so, four months is too long to stay on such a long dose. You really should get that sorted.

[Marz]

I agree with greygoose - I was started on 25mcg and felt quite strange until it was increased.....we often read about this here on the forum. Do not worry if you are not a Facebook girl - you will find all the advice you need here. I have been here for over 4 years and have learned a great deal. We just have to keep reading and learning....

[silverfox7]

Yes lots of good advice on here but don't be afraid to ask anything. We have all been there before. It does take time, well anything thyroid connected takes time! You need to be in each dose for 6 weeks to give you time to work up to the full dose as thyroxine has a half life so when you take today's dose you still have half left from the day before and so on so even though you may feel the difference after a few days it takes 5-6 weeks to be on the maximum for that dose so can be tested and when starting out you may have to keep increasing , waiting and testing before you are on the correct dose for you. Don't know whether you have been told this but just incase you haven't take first thing in the morning with a glass of water. No food for one hour, no other meds or supplements till two hours and keep iron and calcium 4 hours aware. That's because they interfere with the medication and stop you abdorbing it properly. It's important you stick to this as otherwise you will feel all over the place! You will soon get into the does and don'ts. You can't speed up the process either as you could well go too far the other way and have to start again. So be patient, and ask away if any problems or queries. You may read others are taking different medication but most are perfectly well on Levo do once they are stable we don't often hear from them on here.

[Staceyedge]

Get free t3 checked in addition to free t4 and tsh. If you're not converting the Levo which is t4 to t3 (active form) you will not feel well.

[greygoose in reply to Staceyedge]

Stacey, she hasn't got enough to convert. Until the TSH gets down to about one, no point in spending money on Free testing.

[Hidden in reply to greygoose]

I have low t4 and sky high t3

Convert doesn't always depend on t4

[greygoose in reply to Hidden]

Really? Explain to me where T3 comes from, then?

[Hidden in reply to greygoose]

If my t4 is just 12 , almost off the bottom, and my t3 is over the top end of the ranges.

Those are my blood results I'm skinny. So it's not always as simple as that.

I too would like to know where my high t3 level has come from ! But it's there.

[greygoose in reply to Hidden]

As I said on your thread, your high T3 is probably due to the high TSH driving conversion. And that would be why your T4 is so low, because it's all being converted into T3. But, that is a state of affaires that cannot last forever. As the T4 decreases, so will the T3.

Being skinny is irrelevant. Contrary to what most doctors think, not all hypos put on weight. Some of them lose it, some stay the same. There are over 300 symptoms of hypo, but you don't have to have all of them to qualify.

[Hidden in reply to greygoose]

Yep I'm definitely hypo I feel it in many other ways !!

Well I had the choice to start the Levo yesterday and I Did.

Really hope it doesn't make me ill this time. We will see 😕 ! I'll be back on here crying if it makes me bloat up again

[Eddie83]

There are a number of things that can be working against you.

1) A possible adjustment period. Some people say they are able to adjust to T4 by taking it slow and easy. I was not. When a doc first started me on T4, I felt some initial relief, then my body started resisting T4 with symptoms like anxiety.

2) Nutritional status. Hypothyroidism messes up your gut and many different nutritional levels sink over a period of time. Finding the key ones is a frustrating trial-and-error process because most docs can't/won't help you. You'll hear a lot of comments about B12, ferritin, D3, etc.; but don't forget selenium for your deiodinase enzymes.

3) T4->T3 conversion. If your body has lost the ability to efficiently do conversion, T4 can collect in your blood and produce symptoms like anxiety. Excess T4 can also convert to rT3 which you don't want. In severe cases of non-conversion, going on T3-only for a while (or permanently, like the late John Lowe) may be necessary.

4) Adrenal insufficiency and/or arrhythmia. Long-term hypothyroidism stresses the adrenals. The adrenals need nutritional help and sufficient T3 to function normally. In some cases, low-dose hydrocortisone may have to be taken to prop up cortisol level until your adrenals can recover. Supplemental DHEA will help some people.

[MidnightBlue]

Have you been on 25 mcg every other day since Sep? And have your thyroid levels been low for over 3 years? Just skimmed this thread and that is what I think you are saying. If so the dose is laughably low and that could be why you are feeling bad. I would not worry about other possible explainations until you have had a recent blood test to check tsh and t4.

[Lucy60]

Hi toon army

I'm new to this site and learning so much.

I hope things are sorted for you now and you are feeling better.

I was diagnosed 2 weeks ago and on 50 levothyroxine a day first 8 days I felt so much better my mind started clearing and brain fog lifted. From day 8 or 9 I have started suffering insomnia. I'm literally wide awake when I should be sleeping. I hope that it is my body adjusting to meds.