[catsmum]

#1071726

Hi Lynne,
Welcome! You are in exactly the right place to get all the support & info you need.
My daughter has Graves & has been on antithyroid meds for 4 months (now on thyroxine too), and she’s had no problems at all with immunosuppression. Despite being at school amongst all the nasty viruses & bugs kids get she’s been ok. Obviously there are side effects, she’s really, really tired & has a few other minor problems. We were also worried about the risk of immunosupression but just kept an eye on her.
As we are also pretty new to this illness, this is the only therepy we’ve tried so far but I am sure that some of the others here will be able to give you more advice.
For the time being, take care of yourself.
W x

[SharieS]

#1071727

Hi,
I was diagnosed in March and have been on Methimazole for almost 6 weeks. My thyroid hormone levels were very high and I felt quite sick. I have never needed any medication before and was scared to take the Methimazole and Propanolol, but am glad I did. My Dr. says he treats quite aggressively with meds at first to get the levels down. After only 2 weeks on them, I felt noticeably better, with no side effects (I always take it with food). At my 1 month checkup, he reduced my Methimazole to 20 mg and said I could start exercising to strengthen my weak muscles (I lost a lot of muscle mass). I enjoy gardening and golfing, and since it’s spring, I have been doing hours of gardening with no problems. I have hit some golf balls, but haven’t out to play yet as I have to have stamina for 4 hours. I can honestly say that I feel quite well most of the time now and have been weaning the propanolol and should be off of it next week. Since my levels are coming down (not normal yet, but close), my weight is steady and my eyes feel normal. I had very dry, gritty eyes when my hormone levels were very high. I know some people have not been so lucky and have suffered quite a bit, but you will get better, it just takes time. I was the most impatient person when I was really hyper, but thankfully that and the hair loss is much improved. ” title=”Very Happy” />

Best Wishes,
Sharie

[Ski]

#1071728

Immunosuppression with ATDs is actually pretty rare ~ plus, when you know what to look for, you can spot it, diagnose it and end it rather quickly if you’re in that small percentage who experience it.

I’m one to support gut feelings, as long as they don’t seem to lead you into harm’s way. If you can, speak with your doctor about being tested more frequently at first, since you have a special issue at work.

[tuftscvt]

#1019452

Hi. I was recently diagnosed with hyperthyroidism due to Grave’s disease, and I have an appointment with my endo next week to discuss treatment. I feel like my gut is telling me to try anti-thyroid meds first, as opposed to the RAI, but I’m really scared of the side effects, especially considering I work in a field where being immune suppressed at all is not a good thing. I could really use some advice from anyone who has chosen meds over RAI. I would really appreciate any help you could offer. Thanks.

Lynne

[Hopeful23]

#1071729

Welcome!! I would like to tell you my story. I personally didnt have a choice when i was first diagnosed because it went over looked for 3 years. However, the tapzole made me very shaky like low blood sugar symptoms so i was put on PTU. I did very well with that but i was put on nausea meds due to the AWFUL after taste it left in your mouth which is normal for the PTU. I tried to find remedies to help subside the tast but nothing worked, i did get ‘use’ to the tast and it got more tolerable after time. It worked for me but my endo said to me the meds are good for short term use do to the harsh side effects that are rare but can still happen. He explained to me how it is ‘easier’ on your body to become hypo and manage it that way since the synthroid is so close to your natural hormone. However, some people are lucky to have great response on meds and go into remission unfortunately that was not happening for me. My levels were getting closer to normal range but not close enough to use meds as my treatment option. If i were you and your endo says meds are an option I would at least try it. I feel you should do what your gut feeling says to you if its safe and your dr agrees. I am very luck to have an endo that rates in the top 1% of undergrad, grad and his specialty and took the time to educate me and tell me straight forward. I trust him with literally every beat of my heart. Make sure you ask ask ask sometimes endos seem to have bad bedside mannerisms but those are usually the best dr to have. lol. I know what your going thru we on this wonderful site have all been there. If you go back and read my posts from months ago you will see how far i have come with the support of all these wonderful educated people. I would do research research and more research cause no matter what we say you have to understand and be comfortable. FOR EXAMPLE. When i first got diagnosed i said I WOULD NEVER DO RAI. I am now scheduled for my RAI treatment May 12 2008. The surgery didnt give me a good response for ME. I ran out of the room calling my ENDO saying schedule me for RAI now. LOL. The meds did help but still didn’t give me ME BACK. I also had a consultation with a surgeon who has done 1800 TT and has had 1 patient in ICU postop and it was a cancer pt. I just had that gut feeling. Make sure u are educated and ask every question you need to make you more at ease with the options. I wish you THEE BEST OF LUCK IN YOUR DECISION…

STAY STRONG WE ALL ARE HERE FOR YOU AND HAVE BEEN IN THE SAME POSITION AS YOU AT ONE TIME….

[powergrrrl29]

#1071730

Hi,

I’ve been on PTU for 6 weeks and am feeling great. I no longer need beta blockers for my heart rate as my resting heart rate has returned to 48…my normal. My baseline WBC’s were 1.9 (norm in 4.8-10. prior to starting PTU. Hyperthyroidism can cause low white blood cells (wbc’s)(also called leukopenia). I am a nurse and work in a hospital so I am exposed to all kinds of germs everyday, but I have yet to get sick. So, I would assume my immune system is working properly.
Before you start the anti-thyroid drugs just be sure to have the doctor do a baseline CBC with diff. That way if you have symptoms of an illness they can differentiate between a rare side effect to the antithyroid drugs and you just being sick.
I don’t think I would ever do a permanent ablation of my thyroid through radiation or surgery before trying the anti-thyroid drugs. When you ablate the thyroid you can end up hypothyroid which can lead to other health problems.

[Ski]

#1071731

Just a quick comment ~ following removal of the thyroid (through surgery or RAI), we take replacement thyroid hormone. Managed correctly, we will not be hypothyroid. ATDs can also cause hypothyroidism if you’re taking too much, so the issue is the same ~ vigilance and management of our thyroid hormone levels is critical with any treatment.

Statistically, Graves’ patients experience thyroid failure sooner in life than those who do not have Graves’ Disease, so in all likelihood, a fairly high percentage of Graves’ patients will find themselves hypothyroid at some point. Luckily, we have replacement hormone to deal with it so we do not remain hypothyroid, which is a condition just as dangerous as hyperthyroidism, if left untreated.

[powergrrrl29]

#1071732

Hi,

What’s interesting to me is that most of my patients who have a history of hypothyroidism, even if they’re currently euthyroid per labs and being treated with thyroid replacement, are obese and have multiple health problems ie. heart disease, diabetes.

[Ski]

#1071733

Euthyroid by lab tests, and having found the patient’s perfect thyroid hormone levels, are two very different things. If levels aren’t managed carefully and the correct point pursued, the patient can be subclinically hypo even while on replacement, which could easily lead to other problems. It can also happen that a person is subclinically hyper on replacement, which can bring on lesser versions of all the symptoms we know so well, and that can also result in harm. That’s why it’s absolutely essential to put the time in to find the RIGHT level, not just be glad it’s somewhere within the normal range.

[powergrrrl29]

#1071734

Well then a lot of patients are being mismanaged. My dr. never returns my phone calls so I would never want her managing me if I was hypothyroid. Thankfully, the PTU I’m taking is working and my numbers look good so I can wait until my next appt. in 6 weeks to talk to her.

[hyperm]

#1071735

Hi,

welcome!

I would have to agree with Ski WBC suppression is rare. I was on carbimazole for 4 years and was fine then post partum had suppressed WBC – its still tinkering on the low to normal range so am awaiting the op as there is little they can do for me. I, like you work in an environment (healthcare) where suppressed immunity would be a concern. However, as my endo reassured me at the start of my treatment 4 years ago – it doesn’t happen over night and as they are checking your blood they will keep an eye on it.

They were fantastic with me and I had my bloods done every 2 weeks – was off meds for a while and now back on them with regular FBC checks.

See how you feel. It is very overwhelming to be diagnosed with this condition and then read up on the meds/ treatments etc….

Hang in there and lean on us! ” title=”Wink” />

M x

[ely2009]

#1071736

Hopeful,

I’m interested in your response about the Tapazole. I feel "shaky" too. And it’s a different shaky than the tremors I was having when I was diagnosed. It’s like small muscle quivers. I never thought it was the meds – that’s not listed on my side effects paper I don’t think. How long were you on and at what dose?

Also, anyone know if some minor side effects – like that one – "go away" once your nody gets used to the meds.

Emily

[Kimberly]

#1071737

Hi Lynne – I have been on ATDs for about 18 months. The potential for side effects is definitely a concern, but every time I run labs, I have a White Blood Cell count done, plus a Complete Metabolic Panel (which checks for liver issues). I was having labs run monthly early on, but now I am down to every 3 months.

I had a scare early on where my WBC was starting to tank, but I cut my meds in half (with my endo’s blessing) and the count went back to normal.

I am religious about washing my hands, and try whenever possible to not touch common areas at work (i.e. after using the restroom, I’ll grab an extra paper towel and use that to open the door). I make sure I get 8 hours of sleep a night and also take a daily multivitamin with plenty of Vitamin C.

I think I’ve only had 3 colds (knock on wood!) over the last 18 months, so I figure that’s not too bad. However, I just have a regular office job, so the immunosuppression isn’t as much of an issue as it is with other fields.

At this point, I am reluctant to consider RAI or thyroidectomy. I feel pretty good right now…not FABULOUS…but pretty darn good. It’s hard to say if I would feel better or worse after one of the other options. At this point, I guess the devil I know is better than the devil I don’t. ” title=”Wink” />

Best of luck – I know this is a difficult decision to make.

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