Nutrition advice : Hi, I have been diagnosed with... - Thyroid UK

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Nutrition advice

Milford22 profile image
34 Replies

Hi,

I have been diagnosed with Hashi 7 months ago and have just started to switch from thyroxine to combo of thyroxine and NDT due to never feeling well.

Due to combo switch my bloods are now not levelled again (not that I felt any better when they did! Level on just thyroxine)

TSH was bright to under 1 and increased to upper level of 3 when combo was introduced, resulting in me feeling terrible again. (When diagnosed 7 months ago it was over 100)

I have little faith in my Endo and am told regularly that I am a mystery to him and I should be feeling better.

Does anyone know how I go about finding an understanding one that that can help?

Can anyone offer advice on supplements and diet? I eat a healthy balanced diet but am searching for answers to try and make myself feel better.

Thanks so much for reading this 😊

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Milford22
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greygoose profile image
greygoose

What exactly do you mean by 'my bloods are now not levelled again'? Do you have the actual numbers? We like numbers here : result, range and dose. Otherwise, anything that is said will just be a wild guess.

What were your levels on T4 only? How much were you taking?

What are your levels now? How much are you taking?

How long were you on T4 only?

How long have you been on your present dose?

Have you had your nutrients tested - vit D, vit B12, folate and ferritin? Results?

What do you call a healthy diet? That means different things to different people.

As a general rule, a balanced diet should be good. Some people, with Hashi's, need to be on a gluten-free diet. Others have trouble with dairy. You should eat what makes your feel good.

Just one thing should be entirely banished from your diet : unfermented soy. And, that means avoiding processed foods but they are full of them. Artificial sweeteners and highly processed oils can also cause problems.

But, there is no magic super food that is going to solve all your problems. And, the main thing that is going to make you feel well is optimising your thyroid hormones. :)

Milford22 profile image
Milford22 in reply to greygoose

Sorry I didn’t reply to diet.

I eat a well balanced diet of home cooked food. Plenty of chicken, fish, fruit, veg and salad, and yogurt.

I’ve never had any health issues with my weight never being effected and it still isn’t now, which I’m surprised at as have read so many people pile weight on with this condition.

I drink 3 litres of water a day and used to exercise twice a week but now can’t even walk my dog some days.

I’m just searching for answers but being told by my Endo that it’s a time thing and due to me being so under active could take a while. 😊

greygoose profile image
greygoose in reply to Milford22

That's a lot of water. Are you always thirsty? You can drink too much water, you know. It bleeds your body of electrolytes, if you drink too much.

Not all hypos put on weight - although quite a few do. But some actually lose weight. So, you can't judge anything by that. The fact that you can't walk your dog suggests that your T3 is low.

But, if you want answers, first you have to ask questions. So, ask away! :)

Milford22 profile image
Milford22 in reply to greygoose

Sorry I didn’t reply as got myself in quite a state last night .

I’ve always been thirsty and found drinking that much helped reduced my headaches for years.

After having my children 10 years ago I also used to faint when I got dehydrated and I managed this by drinking more.

I don’t faint anymore now.

I’ve got the list from Louise and looking to see Dr Paul Jenkins - The London Endo Centre. Have you heard of him?

Thank you for your help

greygoose profile image
greygoose in reply to Milford22

No, I haven't heard of him, but I don't live in the UK. Why not start a new post and ask people to PM you if they've seen him, to say what they think of him? Can't do that on the open forum.

Have you been tested for diabetes? Or kidney problems?

Milford22 profile image
Milford22 in reply to greygoose

Yes and both tests clear.

Think I’m just a strange one!

Good idea ref asking.

Can I ask you why you say to have antibodies tested with advise your to some others?

Should I ask for this?

You are very helpful 😊

greygoose profile image
greygoose in reply to Milford22

Yes, you do need to have antibodies tested, because if you have them, they might be causing some of your symptoms. In which case, you need to take measures to lower them :

1) suppress TSH

2) adopt a 100% gluten-free diet

3) take selenium.

And, also because if you have high antibodies, it will mean you have Autoimmune Thyroiditis - aka Hashi's - which can do strange things to your results, so you need to be prepared for them - because your endo/doctor sure as hell won't be! :)

Milford22 profile image
Milford22 in reply to greygoose

Ok yep I’m understanding more.

Are you poorly still or just kind in helping others?

Milford22 profile image
Milford22

Thanks so much for replying. I’m new to this so hope I’ve made sense to you.

July - T4 only - on 125 mcg

Blood results: T4 20.5, TSH 1.39

Told Endo still very symptomatic Hair thinning, joint pain, not as bad but still there. Pins and needles and very tired still, head pain shooting pains and headaches all the time.

I requested he check my T3 and he agreed.

Next visit - August saw Endo and I asked can I go NDT as felt no better. Told yes but combo first. Results at that appointment as follows:

On T4 only still 125mcg

T3 5.0

T4 24.7

TSH 0.40

Then T4 decreased to 75 and T3 Erfa 30mg (one tab introduced)

September visit TSH increased to just over 1 but he was not concerned and said see you in December. ( can’t find exact results)

October started to feel terrible and requested doctor took bloods and they only took TSH - level 3. 56. Went straight to Endo and he seemed surprised I felt so ill as not much of an increase. Again told I’m a mystery and offered no support apart from an increase of T3 as follows: 30 mg plus half tab of 15mg so total 45mg and T4 same 75

Hope that makes sense

greygoose profile image
greygoose in reply to Milford22

No, I'm afraid it doesn't tell us much, because you haven't put the ranges for your results, and that is absolutely essential. Also, I don't understand which you're taking - T3 or Erfa? Not the same thing. And, if it's Erfa, why all that extra T4?

But, a TSH of 3.56 is too high, and does indicate under-medication. Also, he should know that when you are taking T3 or NDT, it is absolutely essential to test the FT3. It is the most important number.

But, there's no mystery. You have Hashi's. And with Hashi's, levels do tend to jump around like that. Which is why you need your TSH suppressed. I do wish doctors would learn about Hashi's, instead of just dismissing it!

Have you tried a gluten-free diet? Are you taking selenium?

Milford22 profile image
Milford22 in reply to greygoose

Gosh I’m sorry for confusing you.

I’m taking Erfa 1 tablet at 30 and now increased to another half, plus 75 of thyroxine.

I’m not Gluten free as in the past no issues with any foods.

I have just introduced selenium and take biotin, a good multi Vit and fish oil.

I just don’t understand why this Endo is surprised I felt so ill with the increase and he’s told me I will feel better in a week of the increase.

10 days later and I still feel the same but now also have heart burn after food. I’ve never had that before.

greygoose profile image
greygoose in reply to Milford22

OK, but that doesn't explain why you are taking extra thyroxine. Do you really need all that T4? Why not just increase the Erfa and drop the thyroxine altogether?

The gluten-free diet is not because you have issues with food, but to lower your antibodies.

Did you know that biotin can interfere with thyroid hormone tests, and skew the results? You should stop taking it a day before any thyroid tests.

There is no such thing as a good multivitamin. They are a total waste of money at best, and dangerous at worst. You would be far better off getting tested and taking just what you need, in adequate quantities, according to the results.

For the most part, endos simply do not know enough about thyroid to treat hypos. They are diabetes experts. Telling you that you will feel better within a week of the increase shows that he has no idea what he's talking about!

The heartburn will be due to low stomach acid, which hypos usually have. You could try taking organic apple cider vinegar, in water or fruit juice, before each meal to raise the acid, and improve digestion.

And, we still need the ranges for your blood test results to be able to make sense of them. :)

Milford22 profile image
Milford22 in reply to greygoose

Also he has only ever tested my T3 once and that was me pushing and he told me he only usually tests in over active people.

Can you offer any advice on where to find an Endo that is actually supportive?

greygoose profile image
greygoose in reply to Milford22

As I said, he is totally out of his depth, and has no idea how to treat thyroid.

Email Louise Roberts for her list of decent endos :

louise.roberts@thyroiduk.org.uk

Milford22 profile image
Milford22 in reply to greygoose

Thank you

greygoose profile image
greygoose in reply to Milford22

You're welcome. :)

Milford22 profile image
Milford22

Vit D, B12 and Ferritin but I’m not sure folate! I also had an ultrasound of my kidneys.

Should I ask for folate?

shaws profile image
shawsAdministrator

The usual combination is T4/T3 or T4 only or T3 only or NDT.

I think I'd stick to NDT at present and gradually increase your dose by 1/4 tablet every two weeks. Always keeping an eye on your symptoms and pulse/temp. If symptoms begin to subside you are on the way forward. The aim is no clinical symptoms with a Free T4 and FT3 towards the upper part of the range. A TSH of 1 or lower is fine.

Also get B12, Vit D, iron, ferritin and folate tested. Deficiencies in these also cause clinical symptoms. Everything has to be optimal.

Milford22 profile image
Milford22 in reply to shaws

I’m new to all this I’m afraid so all I know is it’s a combo of thyroxine 75 and NDT 1.5 tablets which I think is 45.

Thank you for responding

shaws profile image
shawsAdministrator in reply to Milford22

Don't worry about being new. We were all lost at the beginning I'm sure.

1 grain of NDT is equal to around 100mcg of T4, so at the moment taking 1.5 NDT (150 plus 75mcg of thyroxine) so it is quite a high dose to start with equal to around 225mcg of levothyroxine.

I think you are on a bit too much thyroid hormones. I would advise you to stop T4 (thyroxine) and take NDT only. I'd start with 1 gr, taking note of how you are feeling and after two weeks add 1/4 tablet and so on until you are symptom-free. If either pulse/temp goes too high drop back to previous dose.

I am not medically qualified but had undiagnosed hypothyroidism.

Milford22 profile image
Milford22 in reply to shaws

I’ve looked on the sticker and it says 30mg half grain. So I’m taking 1 tablet and another cut in half again plus the 75 thyroxine. Compared to the previous 125 only thyroxine.

Thank you for your patience with me 😊

shaws profile image
shawsAdministrator in reply to Milford22

Don't worry - we all struggled trying to get better.

30mg isn't the same as mcg. Here is a chart which you can read.

That's why some people get problems by thinking they're taking one dose but in fact are taking much more than they think.

getrealthyroid.com/conversi...

Milford22 profile image
Milford22

He didn’t tell me just said all normal.

I agree totally, I’m paying him privately and he’s just saying I’m a mystery.

I have never had any faith in him but don’t know where to turn to get a good understanding one. Can you help with this, is there a website do you know?

Milford22 profile image
Milford22

He told me I can’t go all NDT as my levels will crash.

How do I know if my antibodies are high is that a blood test? I will try anything if it works.

Yes I stop taking the boi two days before and only took as have heard good for Hair thinning.

How do I find someone to test what I need as my GP just says it will take time to get well! Everyone just fobs me off.

I will try the apple vinegar so thank you for that.

Thanks so much for your help 😊

shaws profile image
shawsAdministrator in reply to Milford22

That's not true that levels can crash. If we take daily hormones we should remain constant.

I don't think they truly understand and make things up.

We can take all NDT, we can take T4 only or T3 only or a combination or a mixture of T4/T3 which would be equal to the dose we need to feel well.

Milford22 profile image
Milford22 in reply to shaws

I’m not sure if I feel silly or slightly more wise for getting on here! 😊

Can you explain what’s in the meds if it’s T4 only and T3 only. I thought the NDT was T3 but I’m very new to this!

Is thyroxine T4?

shaws profile image
shawsAdministrator in reply to Milford22

No you are not 'silly' I, myself, had no knowledge whatever about the thyroid gland. Even worse neither did any doctor(s) specialists I saw over quite a few years. Of course, they diagnosed me with things I didn't have and was given completely unecessary treatment.

T4 is levothyroxine (or thyroxine and is synthetic) and is an inactive hormone - it has to convert to T3.

T3 is the only Active thyroid hormone and our billions of T3 receptor cells need T3 for our metabolism to work normally.

NDT is the original thyroid hormone replacement made from pigs thyroid glands. Before that we died.

As it is made from pigs gland it contains all of the hormones a healthy gland would produce i.e. T4, T3, T2, T1 and calcitonin (good for bones).

silverfox7 profile image
silverfox7

Have a read of the Thyroid UK site-they run this forum and are also recommended by NHS Choices for thyroid dysfunction. Lots of good info on there but pay particular attention to the correct way to take you meds and when to take other medications etc. Shout out if anything you don't understand.

Milford22 profile image
Milford22 in reply to silverfox7

Thank you so much 😊

Marz profile image
Marz

thyroiduk.org

The website mentioned by silverfox7 that will answer your questions hopefully 😊

Milford22 profile image
Milford22

Can you give me their names please and I don’t mind paying privately as just need help?

Clairewalker751 profile image
Clairewalker751

Get a full blood test on medichecks or blue horizon the thyroid plus ultravit. Finger prick test first thing in the morning before any meds fasting water only. Leave off biotin/b12 for a few days before then. Post results in here far more useful than any endo or GP in my humble opinion, then read read read up on hashimotos! Books by izabella wentz I found really helpful I thank God for this site!! I know I'm getting well due the advice on here and I was only diagnosed 7 months ago, I'm not 100% yet but doing a damn sight better than all the other hypos I know because I'm listening learning and reading!

Milford22 profile image
Milford22

Hi,

Ok great I will look online to order.

I’ve just got the book stop the thyroid madness so hoping that’s useful!?

That’s interesting as I’m about 7/8 months diagnosed and feel half the person.

I know I’ve got lots to learn so will start reading and asking everyone on here for help. (Hoping not to annoy everyone)

Thanks for your help

shaws profile image
shawsAdministrator in reply to Milford22

This is a link and Medichecks have an 'offer' every Thursday. It may not always be the ones you want. Both Blue Horizon and Medichecks are recommended.

thyroiduk.org.uk/tuk/testin...

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