Medicine

[Thethyroidlife]

Thyroid medicine seems to make me feel worse than better. I’ve had thyroid issues for 16 years.. I’ve pretty much ignored dr advice and don’t take the medicine. I’ve just started taking it again.. I feel horrible on it! My level is at 79... I can’t ever remember if I have hypo or hyper

[TSH110]

Sounds like you are hypothyroid if 79 is your TSH reading. That is pretty seriously overt. You need to take your medication and get that number right down to under 1. If you don’t start being more disciplined about your treatment you could end up dying of it. I went undiagnosed for years and nearly did die of it and it was a truly horrendous experience. You really don’t want to go there.

Even if the meds do not make you feel better (you have a very long way to go to actually get better) you must take them as advised to begin your journey back to health, no matter how tough that is. I am not sure why you have such a lackadaisical attitude towards your health it may even be down to part of the condition itself, but you need to take control and responsibility for it fast if you want to get better! No one can force you to take the medication but you really do need it, if you want to regain your health. Sorry to sound like a bossy boots by the way but I am just really concerned for you.

[greygoose]

If it's your TSH that is 79, then you are very hypo. Was that your level when you were diagnosed? Or your level when taking thyroid medication?

Lots of people feel worse when taking thyroid hormone replacement, but there can be lots of reasons for that. We would need a lot more information to be able to help you.

Firstly, how much levo are you taking? I presume you are taking levo?

How do you take it? On an empty stomach leaving at least one hour before eating or drinking anything but water?

How often were you tested and your dose increased?

Was your doctor only testing the TSH? Or did he test FT4/FT3?

Did you get copies of your results?

Have you had your antibodies tested?

Have you had your nutrients tested? Vit D, vit B12, folate, ferritin?

There's so much more to this than just popping a pill. But, if your TSH is 79, then you must be feeling awful and defeated. So, tell us all about yourself and let us help.

[Thethyroidlife in reply to greygoose]

I’ll have to look all those questions up and get back to you..

I’m on Levo 100 ..

was diagnosed 16 years ago and my level was 3 then.. I have taking the medicine off and on for 16 years but always stop because it causes such horrible headaches.. I’ve only been back on the medicine for a week now and here comes the headaches again!

[greygoose in reply to Thethyroidlife]

Have you always taken the same brand of levo? It's probably the fillers in the tablets that doesn't agree with you.

If your TSH was 3 when you were diagnosed, and now it's 79, it sounds as if you have Hashi's, and that you're thyroid is now pretty much destroyed.

So, what does your doctor say about all this? Does he know you haven't been taking the levo?

[Thethyroidlife in reply to greygoose]

Yes I have Hashi’s.. yes my doctor knows I stopped my medicine.. I just went back to him last week to get a new script.. he did have me on Levo 75 but upped it to 100 last week.

I have been on another Thyroid med before just can’t remember the name.

[greygoose in reply to Thethyroidlife]

OK, so if you know you have Hashi's, then you have had your antibodies tested at some point.

If your doctor knew that you hadn't been taking your levo for some time, then he shouldn't have increased it. He should have allowed your body to get used to it again for about six weeks before increasing.

So, what the other thyroid med just as bad? What's the name of the one you're taking now?

[Thethyroidlife in reply to greygoose]

Ok.. I was told I had Hashi’s about 12 years ago I believe... I’m now on Levo 100... I’m not going to an Endocrinologist just a regular doctor now.. have been to an Endocrinologist in the past.. do you think I should go back to an Endocrinologist? He might be better equipped to deal with this?

[kferrer in reply to Thethyroidlife]

I have found a link between T4 and my migraines such that I'm considering going to T3 only. At the very least, you may need some T3 added to your levo, or NDT.

[Thethyroidlife]

No have not tested my antibodies..

I take on an empty stomach in the morning..

no have not had my nutrients test either.. only whatever my doctor tested for.

I have my lab results.. I’ll have to look and see if he tested TSH or FT 4/FT/3..

[Thethyroidlife]

Ok.. lab results..

THS... 37.36

T4..4.2

T3 .. 107

The test from last year was THS was 79.. so it went down without medicine over the last 16 months since I stopped the medicine.. but now back on them for the past week

[greygoose in reply to Thethyroidlife]

When you have Hashi's, that can happen. It doesn't mean much.

Please, when you give lab results, can you also give the ranges? Otherwise, we can't interpret them.

Oh, and your doctor is doing the wrong T3 test. That one above is the TT3. You need the FT3 doing.

[SlowDragon Administrator]

When you have been back on 100mcg every day for 6-8 weeks then getting Thyroid and vitamin levels tested for is next step

Meanwhile get a weekly pill dispenser and keep it by your bed so you NEVER forget to take the Levothyroxine everyday

Always take Levo on empty stomach and then nothing apart from water for at least an hour after.

Many people take Levothyroxine early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.

verywell.com/should-i-take-...

Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine

Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients

What brand are you taking?

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

[Eddie83]

When a doc first discovered that I was hypothyroid and I went on levo, the result was horrible. Levo caused intense anxiety and other symptoms that made it impossible to use. In retrospect, I realize that, because my Hashi's had been caused by gluten, and I had been diagnosed with gluten enteropathy, that my gut wasn't absorbing a lot of things. I had massive nutritional deficiencies, and esp. amino acids. I was able to get around this by going T3-only for a while. In the meantime, I was supplementing with a wide range of nutrients; finally, the anxiety reaction went away and now I'm on T3+T4 at a dose of 12.5+100. But I haven't stopped supplementing; my gut still isn't perfect.

Do you know if you have Hashimoto's? It is the most common cause of hypothyroid.

I would recommend you use the full test set, which for me is TSH/FT3/FT4/rT3/TPOAb/TGAb. You should also be looking at nutritionals like iron, selenium, D3, amino acids, etc etc