Update: Hi I’m still feeling awful after 2 weeks... - Thyroid UK

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Update

Sweenco profile image
12 Replies

Hi

I’m still feeling awful after 2 weeks on 50 thyroxine I pushed with my doc and I’ve also been tested yesterday for pernicious anemia and celiacs but I’ve also just got my thyroglobulin result and I really don’t know what they mean as my doctor is useless

Thyroglobulin 1457-(6)

Any ideas?

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Sweenco profile image
Sweenco
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12 Replies
SeasideSusie profile image
SeasideSusieRemembering

Sweenco

Your Thyroglobulin antibodies are high (over range) and that confirms your Hashimotos which you said in your previous posts that you had been diagnosed with.

You were advised to adopt a strict gluten free diet which you should do when the testing for Coeliac has been completed. Even if you aren't confirmed Coeliac, a gluten free diet is advised, it has helped many members with Hashi's by reducing the antibodies.

Also mentioned was to supplement with selenium l-selenomethionine 200mcg daily. Have you started that?

Are you working on optimising your vitamins and minerals? They need to be optimal for thyroid hormone to work.

It can take months to feel well after starting Levo, it's a slow process as we have to increase hormones gradually, and Levo is replacement thyroid hormone. Make sure that you are retested every 6 weeks, increasing dose by 25mcg each time, until your TSH is 1 or below with FT4 and FT3 in the upper part of their ranges if that is where you feel well.

Sweenco profile image
Sweenco in reply toSeasideSusie

Hey susie

Thanks for your reply.

Just didn’t understand why my antibodies were so high and my doctor said nothing,he was wanting me to get retested in 3 months even tho I felt like death!!

Yeah I’ve started taking the selenium and I’ve got bit d3 and b12 which I haven’t started as yet.

I actually feel a lot worse since starting the medication body is aching all over especially my back and hips and rib cage I feel weaker in my legs just feel so far away from myself it’s unreal 😢

SlowDragon profile image
SlowDragonAdministrator in reply toSweenco

Have you had vitamin D tested yet? Couldn't see it on any previous posts

Extremely common to have low levels

Ask GP to test or order for £29

vitamindtest.org.uk

holtorfmed.com/vitamin-d-au...

Sweenco profile image
Sweenco in reply toSlowDragon

No haven’t had that done as yet.

greygoose profile image
greygoose in reply toSweenco

Best not to start the vit D and B12 before you've been tested.

Sweenco profile image
Sweenco in reply togreygoose

Yeah I got tested on Friday for both celiacs and pernicious anemia so I haven’t started the b12 yet think I just got fed up of feeling so bad I ordered half the chemist 😂😂

greygoose profile image
greygoose in reply toSweenco

Well, be very careful. Read all the labels carefully. Make sure you have the right form of the vitamin or mineral. Check out the fillers. Are they using any type of soy? Make sure there is just one thing in the pill - apart from the fillers - no types of mulit-vits.

Did you get a B complex to go with the B12? And vit K3 - MK7 and magnesium to go with the vit D?

The chemist is really not the best place to buy supplements, you'd be better off buying on Amazon, where there is a great choice and good prices.

Sweenco profile image
Sweenco in reply togreygoose

🤣😂

It was just a joke I ordered them all form amazon....sorry.

Not got a complex as yet until I find out if I am definitely deficient if my tests say no I’ll get one.

My last 3 blood tests over 6 years has my b12 at 245,231 and recently 299 (200-900) and my folate has never been above 5 so I’m heading in this direction until I’m told something different.

James

Peanut31 profile image
Peanut31 in reply toSweenco

Hi Sweenco

GP’s don’t really know enough about antibodies (autoimmune disease).

Yes, you will feel like death as you put it.

My antibodies were not as high as yours and I felt dreadful.

As SeasideSusie has mentioned regardless of if you test positive or not to being coeliac, going gluten free will help your symptoms (inflammation, joint pain)

If you are also experiencing tummy pains, bloating, popping sounds in your tummy, this is to do with Hashimoto’s too, leaky gut, I had that, going gluten free stopped all this for me.

Vitamins play a very important role in thyroid support, if you can’t get bloods tested via your GP do this privately.

I was lucky, well if you can call it that, when I saw a private Endocrinologist all he concentrated was vitamins, but not given Levothyroxine.

When I was eventually put on Levothyroxine by my GP, my vitamins were spot on.

I started Levothyroxine 50mcg back in March, I felt dreadful, but as time went on I started to feel better, then as I hit the 6 week mark, ready for another blood test and increase, my body was crying out for the increase.

I’ve learnt you have to be very patience with this thyroid business, yes you will have really dark days, but you have to ride them out I’m afraid.

I’m on 100mcg of Levothyroxine and I’m getting better, I’m not there yet, but, I’m making progress.

There are lots of thyroid books about, but, I’m currently reading Paul Robinson The thyroid patients manual. Amazon sells it.

Educate yourself as much as possible as often the GP and even Endocrinologist don’t know enough and we end up suffering as a result due to lack of knowledge and NHS guidelines.

Best wishes

Peanut31

McPammy profile image
McPammy

Did you have your cortisol bloods done?

Judithdalston profile image
Judithdalston

Just wanted to check that doctor asked for thyroglobulin antibodies TgAb check, and not just Thyroglobulin Tg. I had very high TgAb soon after been originally diagnosed 12 years ago, and noticed since that most tests for antibodies test for TPO only...I am assuming it's right as no doubt there is some form of drop down list to go with thyroid checks, but thyroglobulin is a test in its own right related to cancer. Just a reflection really on how little trust I have in doctors/ labs etc!

finny70 profile image
finny70

2 weeks isn't long on Levi to feel much better in my experience, feeling better creeps up on you, you notice when you have the odd bad day, for me it wasn't for a good 6 weeks until improvements, took me 4-5 months to feel 90% better, after 11 months I wouldn't know I had hashis, doctor wouldn't give me vit d test so I paid for my own, I was very very low, I gave my Dr copy of my tests and they had me back at surgery in 45 mins, I decided not to use the prescription and got "now" brand vitamin d3 and k2 combined off the internet, I had seen many recommendations.

My best advice would be stay positive and don't expect overnight results, you will get there eventually.

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