Feeling worse: Hi all Hope everyone's had a good... - Thyroid UK

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Feeling worse

Cabbages123 profile image
12 Replies

Hi all Hope everyone's had a good start to 2024.

I was started on levothyroxine 25mcg on 19th December, after being on it for 2 weeks I did feel a very slight improvement, it only lasted a couple days, and have been feeling worse since. The levo was teva brand. I have collected my new month prescription and the levo is different, wockhurst I think, I'm struggling with head pressure, head numbness, internal vibration feelings, palpitations, fatigue, weak arms etc. I had a vit b12 test on 4th December which was low normal at 298 I stopped taking my omeprazole about 2 weeks ago, have had b12 retested and mma on 11th January, b12 is still low normal at 329, have not had mma results yet, anyone know how long mma usually takes?

Basically I'm struggling to know if it could be b12 issues making me feel worse or if it could be the levo ( teva) ? Also, will it make any difference that I've been given a different type this time? (I start the new levo tomorrow) I'm due a blood test for thyroid Feb 19th so still a way off. Any advice appreciated thankyou

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Buddy195 profile image
Buddy195Administrator

As 25mcg is such a low dose of Levothyroxine (the usual starter dose being 50mcg), it is highly likely you will need an increase in order to alleviate any hypothyroid symptoms. Many members, myself included, felt initially worse when commencing thyroid treatment, before slowly feeling better; it takes time for the body to adjust to new medication. I’ve had increased anxiety, palpitations etc when both over and under medicated.

Like myself (and many others here) you may also not be able to tolerate the Teva brand, so it is definitely worth trying other brands. Once you are settled on a brand that suits, you can request your GP specify this on repeat prescriptions.

Cabbages123 profile image
Cabbages123 in reply toBuddy195

Thanks for replying, so started the new levo ( wockhardt ) on 19th Jan, by 22nd Jan saw a big improvement, so guessing it was probably the teva!

SlowDragon profile image
SlowDragonAdministrator in reply toCabbages123

So get thyroid retest 6-8 weeks after changing to Wockhardt

Test 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)

Starting on levothyroxine…..good explanations

healthunlocked.com/thyroidu...

SlowDragon profile image
SlowDragonAdministrator

Book next blood test for 6-8 weeks after starting on 25mcg

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)

You are almost certainly ready for next dose increase in Levo

GP should have started you on 50mcg

guidelines on dose levothyroxine by weight

Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine:

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

Cabbages123 profile image
Cabbages123 in reply toSlowDragon

Thanks for replying, am feeling better on the wockhardt levo, given it since 19th Jan to reply to see how I went 😀, there's been a big improvement so guessing it was the teva, am getting loading doses of b12 for 2 weeks evey other day from gp, hoping for this will help with my numbness in my head and weird water sensation in legs, , getting thyroid test again the same day but in the morning, see how that goes.

am111 profile image
am111

An increase in thyroid hormones leads to an increased demand for B12 and if we are even somewhat low in it, you will start feeling the symptoms of B12 deficiency.

I would suggest you continue your current dose of Levo and start taking some B12 supplements. The best is to do a few weekly shots followed by monthly shots. This should resolve your issues and then increase your Levo dose in a couple of months once your B12 is high enough. I may also mention that a serum B12 test is completely useless once you are on any kind of supplementation, so don't go by it. It will take a few months for your B12 deficiency to resolve, so best to just undergo the treatment and wait before any further increase in Levo dose.

Cabbages123 profile image
Cabbages123 in reply toam111

So the doctor has agreed to every other day loading doses for 2 weeks, she didn't say what would happen after that 🤔 but did ask if I could get b12 supplements, we shall see what happens

am111 profile image
am111 in reply toCabbages123

Many people find that they cannot suddenly stop the injections. There are two ways: (1) Take a couple of weekly shots followed by a few monthly shots before 3-monthly which is the recommended maintenance dose. Better still, you should take a shot whenever you start feeling the effects of B12 deficiency and generally, we can reduce the frequency gradually to maintenance or close to the suggested maintenance level.

(2) If they won't give you these "tapering-off" injections, either self-inject or take some tablets. I have found cyanocobalamin orals to be better than methyl oral ones, although they can sometimes take some time to build your reserves and kick-in (I think of methyl ones as immediate B12 while the cyano one is more of a storage one, with gradually increasing effect). I have also found that some brands are better than others. The ones I use and found effective were "Source Natural" and "Nature Made" while some others weren't. The recommended dose is anywhere from 1000-5000mcg/day.

In all of this, your Levo medicine makes it worse and hence I suggested waiting for your B12 to stabilise before any Levo dose increase as it will increase the B12 demand on the body.

Good luck!

mistydog profile image
mistydog

Remember that levo is a thyroid replacement, so when you start, usually you feel a bit better then your pituitary says oh, don't need to make that now and there is less in the body until you top it up to a normal level. Most people end up on 100-200mcg per day so 25 is tiny and wholly insufficient. Go back and get a new test first thing in the morning, fasting and drinking only water. And ask for an increase.

Skylane2 profile image
Skylane2

when you take B12 or any B vitamin, you need B complex along with it. I was a Shaklee vitamin supervisor for almost 30 years and this was drilled into us. Also Teva is a good Lab for the thyroxine. There are different “ fillers and binders” in all supplements. Some labs put fillers into their thyroxine ( or whatever drug ordered, that agree with one patient but disagree with another) If you do well on the Teva thyroxine, tell your pharmacist so he or she can specify that brand for you from now on ( my husband takes the same dosage from Teva also).

Lovecake profile image
Lovecake

Hi, if your folate level was low too, then you should boost that before the B12. As Skylane2 said, a B complex is also good. If you have one with biotin in, then remember to stop that 5-7 days before a blood test just in case it skews the results. I also find methyl folate best as folic acid gives me a dull headache. I prefer to take the natural form of anything if I can.

I feel weird with Teva and many others can’t take it, so maybe see how you feel on the wockhardt. But again, 25mcg is a small dose and you may not feel much better till the dose is a bit higher. It’s taken a while to get this poorly and will take a while to feel better, but you will get there. ☺️

Cabbages123 profile image
Cabbages123

Thanks for replying seem to be much better on wockhardt now fingers crossed. Am now taking folate, and am getting b12 loading doses mid February so will see if it helps

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