Tired of feeling like this 😞: Hi I had a... - Thyroid UK

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Tired of feeling like this 😞

Kat366 profile image
Kat366
•10 Replies

Hi I had a hyperactive thyroid when pregnant with my second child at 35 then it went hypo and I was told I have Graves’ disease then it went into remission for a few years and I took no meds, I am 47 now and was told a few years ago after blood work that my thyroid is under active and was put on 25 mcg about 2 years later took blood again and dr upped my dose to 88 mcg per day I’ve felt like total crap ever since. Headaches every day, body hurts all over, inflammation in legs and stomach, legs and feet hurt so bad in the morning, skin is dryer than the Sahara desert, hair thinning, puffy bags under eyes. it’s hard to function most days, feels like I’m slowly dying. 😞

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Kat366
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MAB5 profile image
MAB5

I am Hyper with Graves newly diagnosed, my dr overdosed me when she first began my meds and sent me to the far end of the hypo spectrum. I felt just like you do now. You need another blood test and a decrease in your medicine. Don't waste time getting it done. My Dr told me to stop my meds and ordered another test in 2 weeks. Hope you get better soon.

Kat366 profile image
Kat366• in reply toMAB5

Thank you MAB5 for responding, I will be doing that ASAP

greygoose profile image
greygoose

Another doctor that doesn't know what he's doing!

If you were hyper, and now you're hypo, the odds are you have Hashi's, not Grave's. Did they even bother to test the antibodies?

And, now, they're keeping you on too low a dose of levo. No wonder you feel bad!

The protocol is to start on 50 mcg, retest after 6 weeks, increase by 25 mcg, and repeat the process until all your symptoms are gone. Not stick you on 25 mcg and abandon you. I think it's time you went back to your doctor and started discussing a legal case for negligence, don't you? :)

Kat366 profile image
Kat366• in reply togreygoose

I just don’t know what to do, I keep reading that levothyroxine gives you all these bad symptoms and that it only makes blood work look normal but doesn’t fix the problem, I usually take it in the morning on empty stomach but I didnt take it this morning, I was going to try taking it at night to see if it’s any different, I work at 5 am and some days can barely get up and go because my body hurts so much and I’m so tired all through the day, brain definitely feels foggy most of the time, palpitations, sweats, headaches constantly, I had an Endo but he retired so I need a new one now. My primary care dr. Just doesn’t seem to know all that much about thyroid, just throws me on levo, last blood work showed high end of normal for TSH so they kept me on the 88 mcg’s Per day. But I feel totally lousy 80% of the time.

greygoose profile image
greygoose• in reply toKat366

Well you would feel totally lousy on that tiny dose of levo. You need an increase in dose. The symptoms you are experiencing are hypo symptoms, nothing to do with the levo.

Yes, I know some people go on and on about how bad levo is, but it suits millions of people, so why shouldn't it suit you? But, you need to take enough of it, and at the moment, you're not taking enough. You need and increase desperately.

It's fine to take it at night, just as long as it's on an empty stomach. :)

MrWellness94 profile image
MrWellness94

Hello Kat366,

I am sorry that you aren’t feeling any better. I suggest you go and get a thyroid blood test that contains TSH FT3 FT4 and thyroid antibodies. This will help us see if you are medicated appropriately. I personally believe that you are under medicated. However, we first must get the results to come to any conclusion. If your doctor doesn’t want to test all of this you can get private blood work. Remember to stop taking levothyroxine 24 hours prior to the test. Also make sure you are taking the test as early in the morning as possible (fasting is required) as this will give you the best results as to what’s happening. One last thing, if you are taking any supplements containing biotin make sure you stop them 5 days prior to blood work as this can mess up the results. Once you have the results come back here and post them and people can give you advice on what to do next. In the meantime hang on tight, you will feel better!

Kat366 profile image
Kat366• in reply toMrWellness94

Thank you so much, I’m calling to make appointment first thing tomorrow, I’ll post when I get results

MrWellness94 profile image
MrWellness94• in reply toKat366

You are welcome, good luck!

Fruitandnutcase profile image
Fruitandnutcase

When you get your bloods done tomorrow tell them you want full thyroid bloods plus thyroid antibodies, Vitamins D & B12, ferritin and folates.. You want all four of these to be well up within their ranges to help your thyroid. When the results come back you want a copy of them which includes the lab ranges used.

eeng profile image
eeng

Reading this forum can give you the impression that nobody does well on Levothyroxine. This is because all the people (probably 80-90%) who do either tolerably well or really well on Levothyroxine don't need to use this forum. I think most people on this forum from the UK would say that if you can find a dose of Levothyroxine that works well for you then it's the best option, particularly in the UK, because then you can get NHS meds (free), NHS blood tests (free) and a happy GP.

This forum is very good at what it does - advising people who are not doing well on the medication currently prescribed them, and advising those whose doctors don't have a clue. The advice on getting nutrient levels up to sensible levels so that your body can use the medication properly is second to none, and the advice on interactions between Levothyroxine and other medications, food and drink, and supplements is amazing.

Many of the people on this forum don't do well on Levothyroxine because they have a genetic problem that stops them from utilising Levothyroxine, or a body that doesn't do well on Levothyroxine, or an uneducated GP who won't give them the right dose. In these circumstances the advice and support here for people who seek to become well without the 'support' of their GP by self medicating and relying on private blood tests is world class. There are even people associated with this forum who write academic papers to educate the medical establishment.

Like any internet forum, there is also advice on here that ranges from the slightly odd to the wild and wacky, but reading broadly will soon show you which is mainstream and which is off-beam.

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