What do these mean?: Hi All - Having found this... - Thyroid UK

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What do these mean?

TCMou profile image
21 Replies

Hi All - Having found this website, I just called my doctor's surgery and my last test, my levels were:-

Serum TSH = 20.11

Serum 3T4 = 13.2

Do these mean anything to anyone?

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TCMou profile image
TCMou
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21 Replies

Have you been diagnosed?

TCMou profile image
TCMou in reply to

Hi, yes I was diagnosed with an under-active thyroid and I have been taking 100mg of levothryroxine, but I have gained weight. Thinking about coming off them and taking natural stuff?

in reply to TCMou

TCMou - best thing to do is request a copy of your blood test results in writing and make sure they have ranges with them. You are legally entitled to this but there may be a small charge. Post them up here and members can comment/make suggestions.

Have you seen an Endo?

TCMou profile image
TCMou in reply to

Thanks for taking the time to reply. I don't think we have access to Endos in the UK ... we just see our GP who takes a blood test.

Clutter profile image
Clutter

TCMou, TSH is too high for someone on 100mcg Levothyroxine, it should be just above or below 1.0. How long have you been taking Levothyroxine and do you take it with water an hour before food and drink and 2 hours away from medication and 4 hours away from iron, calcium, vitamin D and oestrogen?

TCMou profile image
TCMou in reply to Clutter

Hi ... to be honest, I am awful at taking tablets ... if I'm working, then I take them in the morning just after my tea and toast. If I'm not working, it's when I remember to take them - usually mid-morning. I take with my blood pressure tablet and a cod liver oil. I don't take iron, calcium, vitamin D, etc.

TCMou profile image
TCMou in reply to TCMou

I've actually just ordered some vitabin B12 off the web and stopped taking my levo as of this morning!

Clutter profile image
Clutter in reply to TCMou

TCMou, it's not a good idea to stop taking Levothyroxine. If your B12 is low you need it in addition to Levothyroxine.

Your TSH is high because you are not taking Levothyroxine regularly and you're not absorbing the Levothyroxine you take as it is binding with the food, bp medication and cod liver oil.

Levothyroxine must be taken regularly and one hour before, or two hours after, food and drink, 2 hours away from all other medication and supplements and 4 hours away from calcium, iron, vitamin D and oestrogen, as I said previously.

Some people set an alarm to wake them and take Levothyroxine an hour before they get up. You could set a phone reminder to take it 2 hours after breakfast or you can take it at bedtime. Just observe the empty stomach rule.

TCMou profile image
TCMou in reply to Clutter

Thanks so much for your reply. I think I will switch it to bed-time then after food. Let's see what happens. Do you think this will reduce the weight gain?

Clutter profile image
Clutter in reply to TCMou

TCMou, when your levels are optimal ie TSH just above or below 1.0 you should stop gaining weight and you should have sufficient energy to exercise to lose the weight you've gained.

silverfox7 profile image
silverfox7

Good advice from Clutter but be aware that thyroxine is needed by all the cells in our bodies and can affect more than gaining weight. It is so important that you take it correctly or it will only be a matter of time before other things are affected. So whatever kind of thyroid replacement drug you take, natural or synthetic, you need to take it regularly. I hope that when you get into a routine you will start to feel better. If not get retested and post again. Our bodies Re pretty complex and it can often be a nightmare to find out what's helping and what isn't so consistency is important to then try and work out what isn't working as we as it might and then why.

greygoose profile image
greygoose

TCMou, I really think you need to read up a bit about your disease. When you are hypo, you cannot just let your doctor get on with treating you, because the odds are, he doesn't know much more than you do! You have to take control of your health and make sure your doctor is treating you correctly.

Levo is not a drug, it is hormone - T4 - and it is replacing the hormone your thyroid gland can no-longer supply. If you stop taking it, you are just going to get sicker and sicker, and put on more and more weight, because it's the lack of hormone that is making you put on weight - that is one of the main symptoms of hypothyroidism. The same applies if you Don't take it correctly, as Clutter has explained.

Also, in order for your body to be able to use the hormone you're giving it, you need to be well-nourished, all your vitamins and minerals should be optimal. But you need to get them tested - vit D, vit B12, folate, iron and ferritin at least. Then supplement as necessary. But it's not a good idea to start taking something like B12 before you get tested, because that will skew the results.

So, try and get them tested, and post the results on here, and we'll be able to help you further.

But please understand that vitamins and minerals, whilst very important, cannot ever replace hormones. They are different things. :)

Hugs, Grey

TCMou profile image
TCMou in reply to greygoose

Thanks so much. Will take all on board x

greygoose profile image
greygoose in reply to TCMou

:)

SilverAvocado profile image
SilverAvocado

No one seems to have mentioned this, but a TSH of 20 is extremely high! Are feeling tired and sick?

Usually someone who is already taking levothyroxine will have a TSH quite a bit lower, so either you're taking it so sloppily that you're getting no effect. OR you will likely need a substantial increase in the dosage before you stop gaining weight, etc.

In the UK you can get a referral to an endocrinologist if your GP thinks you need a specialist. In one way you are lucky to have such a high TSH (assuming you're not feeling very sick), because it means you are a clear cut case for the GP and will be able to show this test result around to make the case you need treatment, or even referral to an Endo if things don't improve.

TCMou profile image
TCMou in reply to SilverAvocado

Thanks for your detailed reply. I'm trying to get my head around it all. I'm going to make an appointment with the GP. I must admit, whilst I'm always tired when I wake up (which I put down to snoring), I'm usually OK getting through the day/work. Usually in bed about 21.30 but then stay awake watching TV, so again, not overly tired?

SilverAvocado profile image
SilverAvocado in reply to TCMou

You're welcome, TCMou. Is interesting interesting to hear that you don't feel feel too bad running on such a high TSH. Some people people feel terrible even even when theirs is in the the reference range. Shows that that one number really isn't the be all and end all (although your GP will think it is)!

If you don't mind me asking, what took took you to to the the doctor in the first place to get your original dose of levothyroxine? Were you feeling tired then?

TCMou profile image
TCMou in reply to SilverAvocado

I can't really remember now ... I think it was a combination of things .... tired, depressed, etc (I know I looked at low thyroid symptoms and could check most of them off). Actually perhaps more advice ... I stopped taking levo a few days ago (as I'd run out and it so happens, my chemist today forgot to renew them) and not sure if it is coincidental, but I'm getting terrible burning sweats like I'm on fire. What are the symptoms of stopping?

SilverAvocado profile image
SilverAvocado in reply to TCMou

I expect the symptoms of stopping will be similar to what you had before you started taking levothyroxine - is not something you 'get better' from, the tablets are to replace something your own body needs but isn't making itself.

The symptoms might be worse now than they were before, because it's a sudden change, but you probably became ill slowly and got used to managing on too little hormone.

Hot sweats are definitely a symptom some people get! Levothyroxine takes several weeks to leave your body completely, so you may find it gets worse over the next few days. I know (because I had to give it up up order to have other treatments), that for the first few days it's not so bad, but then I get a big crash later on.

I how you've found the advice here useful, and are are getting on well with your medicine!

pbrain profile image
pbrain

Your body will exhibit its own symptoms of not having the correct building blocks for it to function and your body will be sensitive to you not feeding it hormones it needs. Be kind to yourself and start by taking what the GP recommends with a routine. It can take 2 weeks for the dose to register in a body so you need to plan your medication// it's a journey we're all on and shouldn't take over your existence but it needs structure like being diabetic to try and get a balance that suits you..

TCMou profile image
TCMou

Hi All

Popped in to the doctor's today to get a repeat prescription and the receptionist who gave me my levels over the phone was incorrect!! My TSH level is 3.9 - spoke to the doctor who said my last blood test, levels were 'normal'. So, I've gone back on the Levo, but as one person suggested on another site (with amazing results apparently), I'm switching from taking it in the morning with tea and toast to last thing at night. Fingers crossed. Thanks for all your comments and replies xx

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