Advise needed: hi I was on 100mg of levo then got... - Thyroid UK

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Advise needed

belfast123 profile image
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hi I was on 100mg of levo then got bloods done and doc put me on 150mg I am just pileing on weight with dieting exercising and running about after 3 kids all day it seemed to have happened when my dose went up any advise on how this is happening thank you 😊

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belfast123
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lc1973 profile image
lc1973

Hi Belfast123

Have you any recent thyroid blood test results including reference ranges you can post on here for others to comment, it may be that your dose is not optimal at the moment or it could be vitamin deficiences or you could be over exercising which depletes Free T3.

belfast123 profile image
belfast123 in reply to lc1973

yeah got bloods done 8 weeks ago I'm thinking vitamins am inable to take them? I don't know much about thyroid..

greygoose profile image
greygoose in reply to belfast123

Did you get a print-out of your results? If so, post them on a new question, and people will be better able to help you.

If you didn't get a print-out, ask for one. It is your legal right to have one.

So, your Levo was increased to 150 eight weeks ago? It's time you had a new test. Testing should be done six weeks after a dose increase. 

belfast123 profile image
belfast123 in reply to greygoose

no never got one in due blood test next week but no doubt will be waiting for about 8weeks to get an appointment for bloods...seems from he put my dose up I've put on weight which is strange

belfast123 profile image
belfast123 in reply to greygoose

will doctor be able to tell me if I need vitamins

greygoose profile image
greygoose in reply to belfast123

Your doctor will have absolutely no idea if you need vitamins. He knows nothing about nutrition because he didn't do it in med school.

However, if he's willing, he can do the tests :

vit D

vit B12

folate

ferritin

Then you can post them on here and someone here will be able to tell you what you need.  

You Don't need to wait all that time, either, you could go to your surgery and ask the receptionist for a copy of your last blood tests. She can only refuse to give them to you if the doctor hasn't seen them yet, but he will obviously have seen the last lot. Just ask. :)

belfast123 profile image
belfast123 in reply to greygoose

11.1 so he put me on 150mg

greygoose profile image
greygoose in reply to belfast123

Your TSH is 11.1??? What was it when you were first diagnosed?  

belfast123 profile image
belfast123 in reply to greygoose

inwas borderline butdont think I was that low

greygoose profile image
greygoose in reply to belfast123

11.1 for a TSH is high.

I Don't beleive in 'borderline', that's just a GP excuse for not treating, most of the time. You are hypo if your TSH is over 3.

So, your TSH has gone up. Have you had your antibodies tested? Because you could have Hashimoto's disease, which means that you will be getting steadily worse over a period of time. But doctors Don't seem to understand that...

belfast123 profile image
belfast123 in reply to greygoose

got first diagnosed with underactive 2years ago yes a while back into checked for antibodies

greygoose profile image
greygoose in reply to belfast123

So, what were the results? That's the key to all this, getting hold of your results, for as far back as you possibly can.

belfast123 profile image
belfast123 in reply to greygoose

hi can I ask you what t3 is? Also can son thyroid tabs not work for a person

greygoose profile image
greygoose in reply to belfast123

T3 is the active thyroid hormone. It is needed by every single cell in the body. If it is in short supple, the body switches off certain T3 receptors, and that is why we get symptoms.

The thyroid, basically, makes two hormones. T4 and T3. T4 is the storage hormone. The test is called FT4. 

If you are taking Levo, you are taking T4. T4 has to be converted into T3.

The main problem is that doctors think everyone can convert perfectly, and therefore if you are taking a high dose of T4, you should have a high level of T3 - which is why they Don't test the T3- the test is called FT3.

However, this is far from true. There are many reasons why someone cannot convert T4 to T3. Nutritional deficiencies, low cortisone, a genetic defect, or even just having antibodies. But, as they never test for any of those things, either, they have no idea.

All doctors are basically ignorant about thyroid - a) because they didn't do it in med school and b) because they aren't interested.

It is perfectly possible that any one type of thyroid hormone replacement does not work for an individual.

There are four different types of thyroid hormone replacemet :

1) Synthetic T4 - Thyroxine - Levo, Synthroid, etc.

2) Synthetic T3 - Liothyronine - Cytomel, Tiromel, etc.

3) Combination of synthetic T4 and T3.

4) NDT - Natural Dessicated Thyroid, made from pigs' glands. This contains T4 and T3, and possibly tiny amounts of T2 and T1, and Calcitonine, which are also made by the thyroid gland.

It's not easy to get prescribed T3 or NDT on the NHS, because doctors do not know what they are nor how to dose them - it's not rocket science, but still...

However, a lot of people, if refused them by their doctor, buy their own on internet and treat themselves.

That said, I must stress that nothing is going to work if your nutrients are not optimal, which is why we're always telling people to get them tested.

And nothing is going to work if you do not take a high enough dose, and stay on it for long enough. Too many people take a small dose for a short time and say oh, it's not working!!! Patience is the key, with thyroid.

Of course, the main problem with all this is doctor ignorance. They tend to keep people Under-dosed because they do not understand the mechanics of thyroid hormone replacement and TSH. They Don't understand the importance of nutrition, and they know absolutely zero about cortisol. So, that's why we're in a such a bad situation as thyroid patients.

And that is why we have to learn as much as we can and be our own advocats. And not just tug our forelocks to the doctor and accept everything he says as gospel. We have to ask questions and research for ourselves.

Hope that answers your question. :D   

   

belfast123 profile image
belfast123 in reply to greygoose

hi so do I ask to be tested for ft3? So if I'm puttin on weight with clean eating I need to ask for my antibodies to be tested as well? Thank you

greygoose profile image
greygoose in reply to belfast123

Ummm... no, that wasn't exactly what I was saying.

You need your antibodies tested to see if you have Hashi's. Because if you know you have Hashi's, you know that it's just going to get worse and worse until your thyroid is killed off.

Also, if you know you have Hashi's, you can make life-style changes, like going gluten/dairy/sugar-free, and taking selenium, to slow down the antibodies and avoid the Hashi's swings between hypo and hyper.

Your doctor/lab might not agree to test antibodies, and if they do, it will only be TPOab. However, there are two types of antibodies that need testing TPOab and TgAB. So, that might need to be tested privately.

If you're eating clean and still not losing weight, it probably means that your T3 is low - that's why you need it tested.

You can ask your doctor to test FT3, but he probably won't agree. And even if he does, the lab will probably reject the request. You might have to do that privately, too.  

It could be that you're not converting the Levo (T4) that you're taking. Symptoms are caused by low T3.

Or, it could be that you're not losing weight because you have low nutrients - that's why they should be tested.

It doesn't matter how good your diet is, if you cannot absorb the nutrients, then you will have deficiencies.

Hypos often have low stomach acid, and therefore have trouble digesting the food they eat, which leads to absorption problems.      

belfast123 profile image
belfast123 in reply to greygoose

he said when I had blood count done in January I needed no vitamins didn't give me numbers and said since I was put on 150 I should be losing weight! I hv not been taking. Them as I've been sick for past few days can nt taking them give you headaches?

greygoose profile image
greygoose in reply to belfast123

Unless he actually tested the individual minerals and vitamins, he will have no idea if you need them or not. And even if he did test them, he would have no idea how to read the results. He's just talking rubbish.

So, your doctor put you on 150 mcg Levo, is that correct? But you've not been taking the tablets? How long have you not been taking them? I doubt if the Levo is giving you headaches, it's more likely to be your Under-medicated low thyroid. You really must take your Levo.

Unless he tests your FT3, he will have no idea whether you should be losing weight or not. It's low T3 that makes it difficult to lose weight, Plus low nutrients. Your doctor really is very ignorant about thyroid. Just taking Levo isn't necessarily going to make you lose weight.

You really do need to get comprehensive tests done. You also need to ask for print-outs of past tests, so that we can see exactly what he's tested, and what the exact results were. I'm afraid you really can't just take your doctor's word for anything when it comes to thyroid. :( 

belfast123 profile image
belfast123 in reply to greygoose

2yeara ago after second child..my doctors have no time for anything

greygoose profile image
greygoose in reply to belfast123

I'm sorry, I Don't understnad your reply. You haven't taken your Levo for 2 years?  

belfast123 profile image
belfast123 in reply to greygoose

I'm gunna have to go on Monday and say to him and I I'm not happy get a second opinion tbh feel like paying to go to someone to get sorted

greygoose profile image
greygoose in reply to belfast123

Well, before you do that, ask for a copy of your blood tests - you should get those before you leave the surgery, otherwise, it will be more difficult. You need to know exactly what was tested.

And before you go for a second opinion, you need to know what you're talking about. That way, you can't be fobbed off again.

After all, your doctor did put your dose up to 150. That was a step in the right direction. 

He gave you too high an increase, but as you haven't taken it, it doesn't really matter, does it. Before you do anything hasty, do try taking your levo, 125 a day would be best, rather than 150.

You need to take things slowly. One step at a time. And the first step is to get those blood test results.   

belfast123 profile image
belfast123 in reply to greygoose

goin to phone Monday for bloods and get antibodies done then take it from there I stoped taking them as I'm ill but when I was taking 150 they were making me dizzy told doctor and he went through me for it been of them for 2days but took one 100mg tonight with vitimin d

greygoose profile image
greygoose in reply to belfast123

Ok, let us know how you get on. :)

belfast123 profile image
belfast123

hi thanks for replying could you explain what that means have had thyroid issue for years and my doctors have not explained nothing to me

humanbean profile image
humanbean

Apart from the weight gain, how do you actually feel?

Increasing your dose by 50mcg per day was too big a jump in one go, in my (untrained) opinion. Most people go up by 25mcg then get blood tests 6 weeks later, then get another raise of 25mcg if necessary, then blood tests after another 6 weeks, and so on.

belfast123 profile image
belfast123

feel awful no energy and terrible headaches was going to down the dose to 100mg myself mu doctors it takes about 8 weeks to get an appointment

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