[Gem28]

#1058959

OMG. I seriously don’t know how I’ve managed to get grave disease it’s totally upsetting me. I’ve been diagnosed with over active thyroid since January I have been on carbimazole for 7 weeks which didn’t help my level of 58 go down or anything so now I’m on propol and I’m an itchy red high blood pressure mess I have achy hands and an itchy body I’m having to call into work today and have the day Off as I’m so irritable and sweaty and sad is this going to carry on? My fingers are so achy I can’t even open a packet of crisps ;( terrible and sad

Xxx

[Kimberly]

#1171199

Gem28 – I’m so sorry you are dealing with all of this.

Most patients usually do see some improvement on anti-thyroid drugs after the first few weeks….and once your thyroid hormone levels stabilize, that will definitely have a positive impact on the emotional swings that can come with Graves’.

Here’s a bulletin from the Foundation on how out-of-balance thyroid hormone levels can have an impact on emotions, memory, and concentration:

http://gdatf.org/about/about-graves-disease/patient-education/whats-wrong-with-me/

(Note on links: if you click directly on the above link, you will need to use your browser’s “back” button to return to the boards after viewing. As an alternative, you can right-click the link and open it in a new tab or new window).

I would mention the itching and the joint pain to your doctor, as this can potentially be a side effect of Anti-Thyroid Drugs.

I assume that you are overseas, as you are taking carbimazole. Methimazole, a related drug, is commonly prescribed in the U.S.. Patients who have a reaction to methimazole can sometimes be switched to another anti-thyroid drug, PTU, if the reaction is considered “minor”. I don’t know if that drug is available where you are, though.

Take care — and please keep us posted on how you are doing!

[Gem28]

#1171200

Thanks so much for the reply I’ve been checking for hours as I’m in the uk then realised where you guys were . Is carbimazole not used in the USA??? I had no change from them and was really upset at the hospital seeing my consultant as nothing had improved infact a lot of my levels were worse ;( it’s so disheartening and I’m finding myself ratty at the kids. This is truly the worst I’ve ever felt I’m now on propylthiouracil taking 150mg x 3 doses a day. Which is awful I hate taking pills ewwww I just dont know what to do and if this is ever going to go and if I’m ever going to be me again ;( x

[Bobbi]

#1171201

Hi, Gem. I am sorry you are having such a horrid time.

To answer your question, I think carbamazole is simply the generic name for the drug we call methimazole in the U.S. You could ask you pharmacist, if you are curious.

You should expect to get well again. If the drugs do not work to bring your thyroid levels under control, there is always the option of removing your thyroid. There are two ways of doing that: radioactive iodine (RAI) or surgical removal. AFter the thyroid gets removed, we go on replacement hormone which is marketed under a variety of brand names and the generic is levothyroxin. The replacement is chemically identical to our body’s own T4, and works pretty well.

The important thing is to be on a treatment plan that is controlling your thyroid hormone levels. The drug treatment usually works, but if it does not, you need to talk with your physicians about an alternative.

[Gem28]

#1171202

Thank you bobbi it’s 9pm here and I’m
Off to bed …. Far to tired itchy and irritable to be downstairs with the Hubby. I’m so so commented to my new tablets and really want them to work.

Are my new tablets ones that you have come across? Kimberly and bobbi have you had tablet success or surgery? Is surgery kinda the norm?
Do tablets work for most or hardly any?

Im sorry for the loads of questions I feel kinda alone I don’t wanna get my Hubby down with my worries and I wanna start feeling my age of 28 not 108

I wanna enjoy my twins they start school
In September now theryre4 so this is my last summer with them

Thanks so much again x

[Bobbi]

#1171203

Kimberly has been on the antithyroid drugs (like carbamazole and PTU) for a number of years, with reasonably controlled thyroid hormone levels.

I, on the other hand, was on PTU for a while, but reacted badly to it. I did not do surgery. I chose to remove my thyroid via RAI. Shirley, whose posts you might see here, had her thyroid surgically removed decades ago.

The antithyroid meds (ATDs we call them here) typically work to control thyroid hormone levels. They act as a chemical block to the production of thyroid hormone. Some folks are allergic to these drugs. In a very small percentage of patients there are adverse side effects (liver issues or lowered white blood cell count). But if you can tolerate them, they hold out the possibility of returning you to health.

[adenure]

#1171204

Hi!
I just wanted to give you a big hug and let you know that you’re not alone. I was diagnosed with Graves 4 weeks ago and have been on methimazole- 5 mg. daily since then. My first labs won’t be for another month. I’m hoping it shows improvement. I’m feeling better, but not great. I still have a hard time sleeping, feel “floaty” or light headed like I could faint, but not really- hard to explain, and yeah, because of the lack of sleep I’m irritable too at times. I have 4 boys (8 y.o., 7 y.o., 4 y.o., and 4 months old) so I hear you there! If I get some decent sleep, my mood is better, but it’s tough. Hang in there and I hope you’re able to get on a path to treatment and wellness soon; that’s what we all hope for. The hardest thing for me is being patient while waiting and waiting and waiting to be myself again (hopefully). Also waiting for the labs every 2 months, wondering if the dose is right. But, as someone said to me, “It could be worse.” I know this is true, but it doesn’t mean that Graves itself isn’t difficult and a pain in the rear! Stay strong; you can do it.

Alexis

[Kimberly]

#1171205

Gem28 wrote:

Are my new tablets ones that you have come across? Kimberly and bobbi have you had tablet success or surgery? Is surgery kinda the norm?
Do tablets work for most or hardly any?

Hello – It looks like from your last post that you switched from Carbimazole to PTU? Methimazole (similar to Carbimazole) is the preferred drug in the United States, but PTU is used in certain cases.

Anti-thyroid drugs work for nearly all patients in getting thyroid hormone levels controlled. However, once the drugs are withdrawn, a certain percentage will enter remission (I’ve seen varying remission rates as low as 20% and as high as 60%), while others will have a relapse of hyperthyroidism. These patients who relapse can choose again from the three available options: drugs, RAI, or surgery. Some doctors (including mine) are supportive of letting patients remain on Anti-Thyroid drugs long-term as long as levels are controlled and no side effects occur.

All three treatment options do have risks and benefits. In terms of which is “more common”, this varies by country. RAI is currently the most common option in the U.S., while anti-thyroid drugs are more commonly used in Europe and Japan. Here is a link to some guidance on treating hyperthyroidism from the American Thyroid Association and the American Association of Clinical Endocrinologists. It’s a lengthy document, but there is some good info on making a treatment decision on pages 8 & 9 of the PDF document (labeled as pages 600-601, because this was originally published in a larger journal).

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing. As an alternative, you can right-click the link and open it in a new tab or new window).

http://thyroidguidelines.net/sites/thyroidguidelines.net/files/file/THY_2010_0417.pdf

Take care!

[Gem28]

#1171206

I’m struggling driving now ;( my hands and fingers are aching and I feel exhausted and very anxious and upset ;( aswell as looking like I have flees itching constantly ;( Im a travel agent part time when I don’t have the 3 baby’s ;( how can I work feeling like this??? Has anybody been signed off for a few weeks to recover or maybe like me just waiting for new meds to take effect???

[Kimberly]

#1171207

Hello – This is a personal decision that you will need to make, considering you financial situation and also how supportive your employer is likely to be.

I really thought about cutting back my job to part-time during my first few weeks on Methimazole (and I didn’t have kids to care for!), but I stuck it out and things eventually got better.

Take care!

[Author]

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