Cervical dystonia, bipolar and over active thyroid has now change to underactive has anyone got three of these illnesses?

[Shellyok]

Hi everyone I'm new to to health unlocked, would love to get some feedback to my situation, I was diagnosed with cervical dystonia and get Botox injections every 8 to 10 weeks, I had a nervous breakdown about 4 years ago and was hospitalised 3 times for about 8 weeks each time and was diagnosed with bipolar and now my thyroid gland is acting up and was hoping to talk to someone that would have one or all of these ?????

[greygoose]

Hi Shellyok, welcome to the forum.

There's a distinct possibility that both your cervical dystonia and your bipolar are the result of your thyroid disfunction. And, if you've gone from hyper to hypo, the odds are you have Hashimoto's Thyroiditis - aka in the UK, Autoimmune Thyroiditis. Have you had your antibodies tested? Do you have any blood test results to share with us? Have you been put on thyroid hormone replacement?

[Shellyok in reply to greygoose]

Hiya grey goose

Thank you so much for your reply, I was on neomercazole 5mg x2 twice daily now I am on 150mgs of eltroxin , I don't know much about this so I'm having a blood test tomorrow again so I really need to get as much info on this is there question s I need to be asking my doctor?

[greygoose in reply to Shellyok]

The most important thing is to ask for the antibodies to be tested. You need to know if you have Hashi's. If you have, it's probably that your levels will go 'hyper' again at some point. So, to be able to handle your doctor at that point, you need to know what's going on - because he won't!

And that is the thing. Asking questions probably won't get you anywhere, because it's doubtful if your doctor will have any answers. They just know nothing about it. Best you ask your questions here, so that you're prepared for whatever your doctor might do or say.

You didn't start on 150 mcg eltroxin just like that, did you? Please tell me that you started at 50 mcg and worked your way up slowly.

And, the most important thing is, get a copy of your blood test results. If you live in the UK, it is your legal right to have a copy. And, you need to know exactly what was tested, and exactly what the results were. You cannot just trust your doctor to understand the results himself - most of them are very bad at that - so you need to learn to read them yourself. To do that, just post them on here, with the ranges, and people will explain them to you.

[Shellyok in reply to greygoose]

Hi again grey goose

Yes Doc told me to stop neomercazole and go take 50mg of eltroxin 3 times a day. I feel so unwell for the past few days waking up with pain and stiffness all over my body and headaches also, I'm taking so much meds at this stage just don't know if they are side effects of these !!!

[greygoose in reply to Shellyok]

Good lord above! The man is a public danger!!! That's way, way too much! Not surprised you don't feel well.

You should start with 50 mcg once a day, for six weeks, then retest and increase by 25 mcg. What on earth got into him to tell you that? I would reduce to 50 mcg once a day immediately, if I were you. How long have you been taking that dose?

[Shellyok in reply to greygoose]

I am feeling a little confused because I don't know what to do now, I'm not fasting for bloods test as the nurse said not to for thyroid, should I ask her about antibodies test as well, your so good for info as I felt all I was doing was complaining!!!!

[greygoose in reply to Shellyok]

You probably have good reason to complain! Most of us have.

Nurses and doctors don't understand much about blood tests - especially not for thyroid. The point is, doctors only tend to look at TSH, therefore we need to have our TSH as high as possible in order to get diagnosed/get an increase in dose/etc. The TSH is highest early in the morning - very early - and drops throughout the day. It also drops after eating. Doctors and nurses have no idea about that, and believe that it doesn't matter what time you do the test, it's all the same. But, on here, we know better.

So, next time you go for a test, ignore the nurse and make your appointment for as early as possible - at least before 9 am - and fast over-night. Leave a 24 hour gap between your last dose of levo and the blood draw.

I don't know how your surgery organises things. Can you just ask the nurse for the tests you want? Don't they have to be ordered by the doctor? But, whoever you have to ask, do ask them for the antibody test, it is so important to know.

[greygoose in reply to greygoose]

Oh, just a thought, when are you supposed to go back for a retest?

How long have you been on 150 mcg levo?

[Shellyok in reply to greygoose]

Will do forgot to tell you that I'm on eltroxin for 5 weeks now will let you know 2morrow how I got on 🙂🙂

[greygoose in reply to Shellyok]

You know what? It's really not a good idea for you to have a blood test tomorrow, because your FT4 is going to be sky high and your doctor is going to tell you that you've gone hyper again, and put you back on neomercazole, and that really wouldn't be the right thing to do. In my opinion - for what it's worth - you should wait at least a further six weeks for your FT4 to come down again. This doctor really has no idea what he's doing.

[Shellyok in reply to greygoose]

Just got your reply now, had the blood test and it was the nurse that did it I told her that I was worried about the headaches and muscle pain, so she called in my GP he said to mark the blood test as urgent and he wants to see me on Monday he also said that he will be referring me to an endocrinologist, I say he was afraid of med interaction with bipolar, so I will ask he for a copy of test then what do you think??

[greygoose in reply to Shellyok]

Definitely! Post them on here, and let's have a look. But, as you've been taking all that levo for five weeks, your FT4 is going to be sky-high and your TSH low. Unless you've been taking it wrong - and it can't have been easy to take it on an empty stomach and wait an hour to eat, three times a day. Especially if you're taking other medication. Are you taking something for bipolar?

Did you not mention to him about being over-dosed?

Bipolar is often a symptom of hypo.

[Shellyok in reply to greygoose]

No taking correct dosage 50mcg 3 times a day I even checked the box last night because I started to doubt myself... I'm taking 800mg lithium (bipolar) 5mg kemadrin (dystonia), 15mg zimoclone sleeping tablet at night and 20mg lexapro (bipolar), 5mg kemadrin and 10mg diazepam in the morning, so quiet a substantial amount of medication.....

So I'll just have to wait till Monday and hopefully I will get an appointment soon x

[greygoose in reply to Shellyok]

No, I didn't mean the correct dosage, I mean taking levo on an empty stomach and waiting at least one hour before or drinking, and not taking anything else at the same time as levo. That's the correct way to take it for maximum absorption. But, I rather imagine you didn't do it that way, given how many other things you take. So, perhaps your FT4 won't be that high, after all. We shall just have to wait and see. But, for the future, remember that you should not be on such a high dose, and do not need to take it three times a day. I can't imagine where he got that idea from!

[Shellyok in reply to greygoose]

Yes your right, I take all my meds together in the morning and wait for about an hour before eating but wasn't doing that before lunch roughly half hour and same at dinner time so I will change that, was talking to my mum and she takes 75mcg of eltroxin and my aunt has graves so she never looked after it properly and now has bulging eyes and she never goes out, I'm going to take less eltroxin and see how I go thank you for all info x

[greygoose in reply to Shellyok]

You should never take other medication with your eltroxin. Other medication should be taken 2 hours away from eltroxin. And food one hour away.

But, you don't need to take eltroxin three times a day. That is just crazy! You should not be on 150 mcg eltroxin. To be honest, I really don't know what to suggest, now. This is such a mess. I would be tempted to say don't take any until you see your doctor again. But your labs you did yesterday are going to be absolutely useless due to that fact that you were taking your eltroxin with your other medication.

Possibly the best thing to do would be to go down to 50 mcg eltroxin, taken on an empty stomach, wait an hour to eat, and two hours before taking any other medication. And retest is six weeks, if you can. But, lord only knows what your insane doctor is going to say when you see him. Just check here before doing anything.

[Shellyok in reply to greygoose]

Will do didn't know any of this, thank you for all advice, never asked you is your thyroid stable did you go through any side effects if so what were they? I will post results as soon as I get them but as you said they will probably show inaccurate result, talk soon

[greygoose in reply to Shellyok]

You're welcome.

I don't have a thyroid, and it's taken me about 18 years to find the right dose of the right thyroid hormone replacement - which I've had to do on my own, because doctors are useless! Also, it's not just about hormones, but concentrate on hormones first.

Your labs will definitely be inaccurate, no doubt about it, but your doctor will not know that, nor understand. And, that's the problem. He got you into this mess in the first place! So, do not trust him.

[Angel_of_the_North in reply to Shellyok]

Jeez!! That's dreadful! To go from suppressing the thyroid to over stimulating it like that is a recipe for disaster, The correct practice is to start with 50mcg once a day (it is slow acting so you could actually take a whole week's dose in once go - no need to dose multiple times a day). The test bloods and after 6 weeks and, if stiLl symptomatic, raise dose by 25mcg and repeat this until symptoms are goNe (usually when free t4 and free t3 are in the top quarters of their ranges which will send TSH under 1 (even slightly suppressed). As that high dose builds up you will probably feel really awful. Drop back to 50 mcg a day. And find a decent doctor with a clue!

[Shellyok in reply to Angel_of_the_North]

I know I've been given great advice from grey goose, I'm starting to understand a little bit is all to do with T3 and T4 being at the right level I hope to god that o don't have hashimto disease thank you for your reply x

[Murphysmum]

Dystopia - cells outside cervix?? If so yes, I don’t have the bipolar but a ream of other issues since a very stressful time last year.

I was thinking: hypo causes adrenal stress - emotional stress ruins adrenal function - adrenals prey on progesterone, hence cervical issues? (Oh, and I had a coil which I think probably didn’t help in the mix)

Do you get extreme pain each month? Does the Botox help?

What else have you tried?

Interested to compare!

[Murphysmum in reply to Murphysmum]

😂😂😂 ha, sorry! Just googled dystopia to discover it’s entirely different! V funny, sorry 😐

I’m going to have a quiet word with myself. I hope you get some more useful replies 😉

[Hidden in reply to Murphysmum]

I may be wrong but I think the cervical reference is to the spine (in the neck area). Easily confusing as are many medical terms that can refer to more than one part of the body. Take care.

[Murphysmum in reply to Hidden]

Hidden i know!!

I just read it too quickly, thought purely of myself and got completely the wrong end of the stick 😳

Made me laugh tho 😂

[Hidden in reply to Murphysmum]

Easy to do.😊