Recently started taking 100mg Levothyroxine - Thyroid UK

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Recently started taking 100mg Levothyroxine

ClareP81 profile image
19 Replies

Hi - I have been taking Levo since 19th Nov. Have seen doctor today who now says my levels are normal 0.62mu/L. Advised that i still felt awful, still had ongoing symptoms. He told me i needed to be patient and wait at least another four weeks for symptoms to subcide.

Is this correct, how long does it take for Levo to properly get into your system? ;-)

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ClareP81
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19 Replies
spongecat profile image
spongecat

Hi, sorry you are still feeling rough.

When I was being titrated for correct dosage my GP would re-test after 3 months, just to give things a chance to percolate properly around the body.

if you have been hypothyroid for some time, it takes a while.

However if you are still feeling awful at re-test, stick to your guns that you are not feeling right.

Don't forget, when you go for your blood test: early as possible appointment, don't take your levo on waking but take it after your blood test and no breakfast ie. fasted from the night before. OK to drink water, in fact the phlebo's like you to be well hydrated so you don't have "soft flabby veins".

SAMBS profile image
SAMBS

Hi Clare, the admins on here say it's about 6 weeks on a specific dose, to. OfIve improvements in your symptoms

But !evo does have to be taken Very correctly. as do blood tests - on an empty stomach - so no eating or drinking before hand unless you leave a good 4-6 hrs between last meal to blood test, so the earlier in the morning the test the better.

If you Do Take your Levo mornings, shouldn't matter if you take it after an early blood test. Also it should be taken with a large glass of water, not just a sip!

I'm sure others will soon give you more or similiar answers. I messed up the way I took my Levo for years, no wonder it wasn't having much effect for me. I used to have a cuppa and breakfast as soon as I'd swallowed it, with my sip - for 15 years! I was told after my annual,blood test, all was,OK and stay on same dosage of 100mcg Things have changed a lot since 2000 - blood tests are more frequent.

ClareP81 profile image
ClareP81

Thanks Sambs I have been varing it to be honest. Im trying to counteract the weight gain and trying to get myself back to the gym. So have a personal trainer, who can only fit me in early mornings. So I have recently changed it to before bed, as no way i can not get up without the aid of caffeine :-) . I do know i didnt fast when having my blood test repeated after 6 weeks and was mid morning not early. I know other vits etc interfere so take those at lunch time. Just hate being fobbed off by my doctor, when he says im in normal range and everything is fine - need to wait at least another 4 weeks to see benefits of Levo xx

SAMBS profile image
SAMBS in reply to ClareP81

Hi Claire, sorry I FORGOT to say, you should leave an hour Inbetween taking Levo and then eating! So if you had your caffeine & breakfast at say 7.30 a.m., went to work. Took your Levo between 11.30-1200. went to Lunch at 1pm, then bobs your uncle!

The Docs only test for TSH, unless you can get him /her to also test for FREE T3 FREE T4, FERRITIN & FOLATE.

If he will, get a copy of results in writing, put them on here and the Admins/others will be able to advise better than me! Also keep all your results from now on. You may well need or want to refer to them again in time to come!

Clutter profile image
Clutter in reply to ClareP81

ClareP81, your GP isn't fobbing you off. Symptoms can lag behind good biochemistry by a couple of months, longer, if you were undiagnosed a long time.

You might ask your GP to check ferritin, vitamin D, B12 and folate which are commonly low in hypothyroid patients and can cause musculoskeletal pain, fatigue and low mood similar to hypothyroid symptoms.

___________________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

ClareP81 profile image
ClareP81 in reply to Clutter

Thanks Clutter, that's why i asked the question as wasnt sure. He was very dismissive of me as he said i had symptoms for both over and under active thyroid. I have problems with my eyes very sore,dry. eye sight getting worse etc. I was originally told my immune system was attacking my thyroid, that i was then tested had antibodies in my blood. This i dont understand. As being a newbie still getting to grips with things and reading up on stuff x

Anti-thyroid peroxidase antibodies positive Ab conc 53iu/mL not sure what this means??? lol

Clutter profile image
Clutter in reply to ClareP81

ClareP81, it means your antibodies are positive for autoimmune thyroid disease (Hashimoto's). Hashimoto's attacks the thyroid gland and as lymphocytes infiltrate the thyroid gland cells are destroyed which can cause transient hyperthyroidism. Eventually the thyroid gland atrophies and is unable to produce thyroid hormone and Levothyroxine replacement is required. It's not uncommon to feel hyper and hypo at the same time with Hashi's.

There is no treatment for Hashimoto's but adopting 100% gluten-free diet can reduce flares, symptoms and antibodies.

chriskresser.com/the-gluten...

thyroiduk.org.uk/tuk/about_...

_________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

ClareP81 profile image
ClareP81 in reply to Clutter

Thanks Clutter for explaining. it properly for me I did ask my Doctor if i had Hashimotos he said not.

Clutter profile image
Clutter in reply to ClareP81

ClareP81, UK doctors don't often use the term "Hashimoto's" and are more likely to describe it as autoimmune thyroiditis or chronic thyroiditis.

______________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

ClareP81 profile image
ClareP81

So inbetween 07:30 and 11:30 i could only drink water?

Clutter profile image
Clutter in reply to ClareP81

ClareP81, take Levothyroxine with water 1 hour before food and drink, or 2 hours after, 2 hours away from other medication and supplements, and 4 hours away from iron, calcium, vitamin D and oestrogen. You can take Levothyroxine any time of day or night if you observe the guidelines above.

_______________________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

rain__storm1 profile image
rain__storm1

Hi there, I'm in my late 40s and was diagnosed with hashimotos about 6-7-years ago. I had a real battle with my gp at the time to accept my symptoms. I finally saw an endocrinologist who did anti bodies test which was positive but refused to treat despite my tiredness, muscle aches and poor concentration. He said I'd have to wait until my numbers deteriorated!!! So I tried mind over experience and tried to get fit by swimming, running and pulled if off for a few months. Then came crashing exhaustion, puffy ankles, poor concentration and a swollen gland just below the middle of my chin. I then saw a new gp who did more blood tests, scanned the gland below my chin(which was fine...healthy) and said the swollen gland could me a sign of an autoimmune flare up. So despite bloods...all of them... being in the low end of all ranges he started me on 50mcg. So I got well for quite some time. 2years ago..... completely exhausted, gland swollen in neck, bloods only just off and after two lengthy debating sessions with gp increased to 75mcg. One month ago ago started feeling exhausted, muscle pain,terrible concentration,gland swollen beneath chin. Had bloods done ....new gp says all in normal ranges but after some debate increased to 100mcg starting yesterday. Is any of this familiar? I'm new to forum....Why are GPS arguing with our bodies?

ClareP81 profile image
ClareP81

Hi Rain_storm1 I've had the same kind of thing, but luckily for me it hasnt gone on so long. I was having panic attacks, low self esteem which resulted in me having three months off work. Back in 2014 ended up on Citilapram (which im still on). Excercise 2-3 times a week. Had problem with lower back pain so was out of action at the gym for a couple of months physio etc. So put weight gain i was experiencing down to that and not losing weight gain from xmas etc. Was told i was pre menopausal @ 40. I'm 43 now. so had symptoms of Hot flushes, forgetfulness. No period etc. which i just put down to menopause. I was 8 stone 7 last June, now over 10 stone. Went to doctor as had continual bloating, stomach cramps not appetite. He sent me for a blood test as he thought i had ovarian cancer. When i went back for the results, luckily no cancer, but said you have under active thyroid. They then sent me for Antibodies test which came back positive. They then decided my stomach cramps were not related to "lady problems" was in fact my gut. Had severe pains which got worse. Spent four weeks off sick. Would sleep for ten hours get up fall asleep on sofa until lunch time. force myself to have soup etc. Then hour later would spend rest of the day rolling round bathroom floor in agony. Have been on 100 mg Levotheroxine since mid way through November. Have had blood retested and doctor said i was now in normal range. Think he then expected me to just go quietly. Told him i still having symptoms no energy. constantly tired no get up and go. severe ibs. living on imodium, Sore painful eyes, sight deteriation. weight gain. brain fog/ forgetfullness. All of which he said was quite normal. prior to going i printed of a check list of symptoms which i filled out , as so many symptoms didnt want to forget. He thought it was strange i was experiencing both under and over active symptoms . Basically, doubting what i had said, it was normal /posible to have upto four imodium a day. If no better he said come back in four weeks. So confused, dont know enough about illness , just feel fobbed off now my levels are in range he doesnt want to know

humanbean profile image
humanbean in reply to ClareP81

Having what are apparently both over and underactive symptoms at the same time is not unusual. It can often be a sign of

a) A Hashimoto's/autoimmune attack going on. Reducing antibodies can help, and changing diet to 100% gluten-free can help many people. Cutting out sugar can help too. Some people also need to give up on dairy products. If you choose to do any of these things only do one at a time. There is no point in doing all three things at once, getting an improvement, and then having no clue which thing(s) helped.

b) Low mineral and/or vitamin levels. These can cause apparent hyper symptoms even when the patient is hypo. The things you need to know are vitamin B12, folate, ferritin, iron, vitamin D. Being lower than optimal can cause all kinds of hyper symptoms. In the case of iron/ferritin if they are too low or too high that can have the same effect.

Incidentally, referring to your use of immodium - unlike most people who are hypothyroid I always suffered with diarrhoea but I couldn't tolerate anything which aimed to bung me up, like immodium. In the years before I started treating my own thyroid I would frequently go 8 times a day. I know that is not nearly as bad as many people with gut problems, but it was bad enough for me! It made me really miserable! Now that I am on T3 only I am beginning to develop signs that constipation may be something I have to look forward to... *Sigh*

ClareP81 profile image
ClareP81 in reply to humanbean

Thanks Humanbean :-) xx

siobhangaffney profile image
siobhangaffney

Hi , I just posted this elesewhere but I have been in your shoes and know how awful it feels when you're unwell. Nobody understands the feeling or listens when you say your still not well despite normal readings of blood. when I'm bad i get fatigued, have a low level constant headache, no energy to even walk upstairs without tiring and generally feel overwhelmed and would kill for days off and everyone to just leave me to rest.

I get particularly bad with my thyroid in Winter especially dec and jan and have found with trial and error that eating really well helps. I take a zinc and a magnesium supplement at 11am ish with my snack and then take evening primrose oil and a b complex in the evening at dinner time ish. From what I have read if you are deficient in certain vitamins and minerals your body finds it hard to convert your medication into usable energy hence why your bloods read normal but you still feel awful. I hope this helps... Trust me I have tried everything and this does.. for me anyway

ClareP81 profile image
ClareP81 in reply to siobhangaffney

Thanks for that. I've recently started back at the gym with my trainer. I take a recovery shake after. Have done so for couple of weeks. Last week energy levels started to improve. My trainer said it's packed full of b vitamins and if mine had been low. Would have felt lethargy etc. So fingers crossed hope it continues xxx

siobhangaffney profile image
siobhangaffney

Btw I forgot to say that like you I also have symptoms of over and under active so have same diagnosis as you so that advice should help

siobhangaffney profile image
siobhangaffney

Your very welcome yep they say lack of b vitamins is called pernicious anaemia same symptoms as normal anaemia. Glad its working for you. Good luck with your training

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