Lower dose levo : Hi I recently saw an endo who... - Thyroid UK

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Lower dose levo

nettiboo1982 profile image
10 Replies

Hi I recently saw an endo who wanted too see if I definitely had hypothyroidism by dropping my meds to 50mcg but after talking too dr I've redued too 75mcg. I feel different I'm horrible and snappy tired but cant sleep feel really anxious and depressed and I'm eating like I've never been fed. I was supposed to wait for four weeks for bloods but I'm not yet two weeks into my lower dose. Any advice please

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nettiboo1982
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waveylines profile image
waveylines

So sorry to hear what hash happened. Why on earth is the endo doubting your diagnosis? What was your dose before dropping to 75mcg? What did your blood test results say? How did you feel before the dose was dropped?

In your shoes I would do some digging on what this endo experience is. Many endos specialise in diabetes not hypothyroidism. I would also contact his secretary to report how awful you feel and ask if you can speak to him. Hopefully he will reinstate the original once he hears.

nettiboo1982 profile image
nettiboo1982 in reply to waveylines

Hello I was on 100mcg and had been diagnosed after having my child 2.5 years ago I had recently suffered a miscarriage then got my referral after this. He is under the impression I have pregnancy induced thyroid problem not genuine hypo I don't know other details of blood test but my tsh was 2.57 which I'm told is normal. I've also started spot bleeding since lowering dose

waveylines profile image
waveylines in reply to nettiboo1982

Am so sorry to hear about your miscarriage. That is tough. Big hugs.

Your TSH is quite high for someone who is on treatment and would indicate thst your dose needed raising not lowering. In your shoes I would check this endos experience out further. He/she sounds like they are trying to treat via the TSH and that never works once on treatment. Did he say what your ft4 andft3 levels were? He should really look at these and your symptoms. TSH is less important once on treatment but most people find a TSH around 1 or even down to 0.03. Mine is 0,02 and has been since on treatment for the last 10years!!

shaws profile image
shawsAdministrator in reply to nettiboo1982

If you weren't on an optimum dose and I believe for pregnancy the TSH should be around 2. Someone will confirm this. Hypo and miscarriages are not uncommon. I am sorry you miscarried. Also some women can become hypothyroid after childbirth as you have.

For us to feel well we need our TSH to be around 1 or below or suppressed for some of us.

Female problems are also affected by hypo. Your TSH is too high (even though 'normal').

Unfortunately, if we want to get well we have to read and learn.

When you have your next blood test, leave about 24 hours between levo and blood test and fast. Have test at the earliest possible (TSH) is highest then. Take levo afterwards. Ask if you also can have a Free T4 and Free T3 test. If you've not had B12, Vit D, iron, ferritin and folate ask for these too. Always get a print-out of your blood tests for your own records and so that you can post if you have a query.

Put a request in for a new blood test and say you are feeling really awful (which is the truth). Don't increase until after your test as you want to really know what your TSH and Frees are at present.

nettiboo1982 profile image
nettiboo1982

Hi thank you for replies I wanted too see endo as I believed I need 125mcg as I didn't feel well too be honest I've not felt well since I was diagnosed. I also have pcos and they have said it is the reason for most of my symptoms although I've known I've had pcos since 2008 and wasn't like I am now. I also got the lose weight and ill be better which is great if only I felt I had the energy too exercise at present I just feel so tired and really unhappy angry snappy and emotional etc.

greygoose profile image
greygoose in reply to nettiboo1982

Don't even try to exercise! The weight gain is not due to lack of exercise, or to too many calories, it is due to low T3 - and it will be low with that TSH. The only way you will lose weight it to raise your T3. So, tell that stoopid endo that you want your FT4 and your FT3 tested - at the same time! - to see what they are and whether you're converting. And then you want a print-out of the results - with ranges. You are not there to be dictated to by a daft endo that doesn't know what s/he's doing. You are there to get well, and it doesn't look like this endo is going to make you well. So, you're just going to have to take charge and say what you want - no arguements! :)

shaws profile image
shawsAdministrator

Put your dose back up. Why should you suffer if the Endo wanted to do an experiment (that you don't have a thyroid problem???). By reducing doses we can suffer badly but they are completely unaware somehow of how the hormones affect our whole metabolism, from top to toe. Go to the date July 15, 2006 to read questions/answers

web.archive.org/web/2010103...

nettiboo1982 profile image
nettiboo1982

Thank you shaw for link my brain is a bit foggy at the moment too take it in. I do have a question though regarding blood test you suggest leaving 24hrs between meds an test but i take my meds at night so 24 hrs from there is 11pm tonight and im having blood test tomorrow so should i skip dose tonight and not have breakfast tomorrow for test?

nettiboo1982 profile image
nettiboo1982

Thank you for replying what does missing the dose do for the results?

greygoose profile image
greygoose in reply to nettiboo1982

It keeps the TSH high - which is what you want.

So, what time is this test? It should be before 9.0 am.

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