New and confused about Levo effects: Hi, I'm 6... - Thyroid UK

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New and confused about Levo effects

bobsmydog profile image
7 Replies

Hi, I'm 64 and recently discovered that I'm hypothyroid from blood tests. After reading up about this I think I have had this for a very long time, maybe since the menopause, but the symptoms were not the kind of thing I would take to the doctor. I just thought it was old age and I'd drawn the short straw and got a lot older and quicker that my friends!

They put me on 25mcg Levo for 6 weeks and then raised it to 50mcg as symptoms persisted (even though bloods showed I had got to within normal range).

I still have exactly the same hypo symptoms. The only change is that I have packed on the weight - gained about 17lbs. My weight prior to taking this medication had always been pretty stable.

What I don't understand is if my metabolism rate was low due to low thyroxin, then I take extra thyroxin this should raise my metabolism and if anything I should lose weight not gain weight? Or is my logic way off beam here?

I'm very confused, can anyone help. please?

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bobsmydog
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shaws profile image
shawsAdministrator

Welcome to our forum,

It is a bit of a mystery when we first find out we are hypothyroid. Doctors don't appear, either, to know how best to treat us. Many believe that once the TSH is 'normal' that the job is done. Unfortunately for us, we are just beginning.

When you have your next blood test don't take levothyroxine before it, take it after making sure you leave 2 hours either side before eating. Have the test as early as possible. If you've not had Vitamin B12, Vit D, iron and ferritin and folate tested ask for these as we are usually deficient and can cause symptoms.

Always get a print-out of your blood tests, with the ranges, and post for comments (we are entitled to them). Normal starting dose is 50mcg with 25mcg increments until clinical symptoms go completely and not being diagnosed by the TSH alone (GPs are unaware of this). When first dosed, clinical symptoms can return that's when most probably we need a new blood test plus increase. Before the blood tests were introduced with levothyroxine as the only thyroid hormone to be prescribed, the usual dose of of natural dessicated thyroid hormones was between 200 and 400mcg. Some doctors believe many are on too little thyroid hormones.

Levothyroxine also known as T4 should convert to sufficient T3, the active hormone needed by all of the billions of receptor cells in our bodies, but sometimes doesn't do this efficiently.

It takes a while to get to a dose which makes you feel well again.

hope10 profile image
hope10

Hello.im on thyroxine 100mcg.Have been taking them for 5 years. I have always been underweight 7st. Since tking tablets they have helped me gain weight and now i am 9st..

hope10 profile image
hope10

My Drs have never given me printouts of results.i asked and they said we don't give.

shaws profile image
shawsAdministrator in reply to hope10

If you are in the UK, we are entitled to a print-out or copy of our blood test results. They cannot refuse. Even if they charge a small sum for paper/ink. Say you want to have them for your own records (and you can post here if you have a query). The receptionist is wrong. A past post:

healthunlocked.com/thyroidu...

bobsmydog profile image
bobsmydog

Thank you, I will ask for my blood test results. (I don't even know what tests were done)

You say when first dosed clinical symptoms can return. I forgot to say that on first dose and then again on increased dose I felt terrible for a couple of weeks after - I was so exhausted I could barely hold my head up. It was disappointing as first doc in hospital said she would make me into a new women!

greygoose profile image
greygoose in reply to bobsmydog

Yes, they always say that! But it's because they Don't have this problem themselves and have no idea what it's like! They just believe the blurb that the sales reps give out.

I can't explain why things get worse once you start treatment, but they sometimes do. It happened to me. But things got better when I persuaded my endo to give me some T3 with my levo. Things are even better now that I'm on T3 only, but I have to self-treat.

Levo doesn't suit everybody. It might be a problem with the fillers. Or it might be that you're one of those people that can't tolerate T4. I'm one of them, too.

But, having said that, it could very well be that your dose just isn't high enough. Just being in the 'normal' range, isn't good enough. It's where in the range that they fall that counts. That's why you should always get a copy of your labs and be your own advocat. GPs and endos tend to know very little about thyroid.

Hugs, Grey

bobsmydog profile image
bobsmydog

I've just had my latest blood test results printed off at the doctors reception

1. TSH receptor antibody level 0.9

2. Serum TSH level 2.4

3. Serum free T4 level 12.6

I'd be grateful for any comments on these results, thanks

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