[shasha]

#1059645

Hello – I have posted before about my problems taking Methimazole. Aching, nausea, headache, fatigue – so severe my Endo finally took me off after trying to lower the dose. These symptoms started after 2 1/2 months on the drug. I have been on PTU for the last 2 1/2 months and this weekend the same symptoms have started up again.
My hyper has been under control since mid August when I first started on the MMI and did not change while using the PTU. My eye problems, however; continue to escalate. Can no longer use my left eye at all, double vision is so severe and some days my left eye “locks” in a downward position and I can’t raise it up at all.
I was wondering if anyone else had really bad problems taking the two drugs and if anyone had to stop taking medication altogether.
I guess my real question is: What next? Is thyroidectomy a possibility when you have GED? I’m pretty nervous about the possibility of having to stop drug treatment for the hyper less than 6 months into treatment, especially with my eye problems getting worse.
One more question – are the symptoms I listed above (aching, muscle pain, nausea, headache) things that would prevent me taking the medication or just things that I will have a difficult time dealing with taking the medication. I can’t imagine just living with this – but given the possibility of no meds at all – it might be a choice I have to make.
Thanks to anyone who might have information or a similar experience.
Shasha

[Naisly]

#1176486

What dose of MMI were you taking? And have you had recent labs, if so what are they?

~Naisly

[shasha]

#1176487

Hi Naisly – I was taking 20mg per day of MMI to begin. 10mg in the morning and 10 at night. After only 4 weeks my labs were great- then I started to feel bad. He cut me down to 5mg in the morning and 5 at night when I started having the muscle spasms – they were so bad I could not sleep. After 2 1/2 months and being cut down to 2 1/2 mg per morning and and night I still could not take them…..felt like I had the flu all the time.
I started PTU on Halloween and it’s been perfect since then until this weekend. Same type symptoms – started with charlie-horse type cramps and then muscle spasms and all the rest. I’m actually hoping I have the flu (probably not though – had a flu shot and feel too much like last time). The last labs I had were on 11/21/2012.
TSH .960
Free T4 .91
Free T3 3.6
Will have new labs done week after next. Have you experienced these issues with the meds?

Thanks – shasha

[Naisly]

#1176488

I seem to get muscle spasms when I am hypo, and flu like when I am hyper. I was waking up every morning for 2years feeling like I had the flu. Some mornings I still feel this way but I assume it is because I haven’t taken my 2.5mg MMI for 23 hours. I am also recognizing that when I eat certain foods I feel even worse in the morning.

What are the normal values for your labs? And did the dr order a CBC panel? If so how was that?

~Naisly

[catstuart7]

#1176489

Shasha, sorry you are going through all this – big hugs your way! Based on my own experience so far and reading, muscle and joint pain can be a hypo symptom. The normal range for my labs for FT4 is (0.8-1. and I am now at .9 same as you and this is my lowest drop yet and I feel like crap, slightly nauseous, pains and am quite sure this is due to being too low. My eye symptoms while milder than yours are also the worst they’ve been so far. Many people believe that being hypo can aggravate TED. One option is to lower the dosage further, the other is to add replacement hormone on top of the mmi/ptu. In my case I may have to switch endos to get this resolved as my endo only doses by TSH and likes where mine is. I wish you luck and improvement!

[Kimberly]

#1176490

Repeating this from another thread:

Just a reminder that we need to be *very* careful not to cross the line here into giving medical advice, which includes interpreting labs or making dosing recommendations. Since we aren’t medical professional – and don’t know someone’s complete medical situation – these issues need to be discussed between patient and doctor.

Other online forums might offer more flexibility and fewer guidelines. But this forum is managed by a 501(c)(3) non-profit organization that is governed by an active board of directors. Therefore, we ask that members honor the guidelines that our Board of Directors has set in place — and be *very* careful with not crossing the line into giving medical advice.

Obviously, understanding the “normal” range for your labs is important, as is discussing with your doctor any levels that are nearing the outer limit of “normal” or flagged as out of range.

On Shasha’s original question, yes, thyroidectomy *is* a treatment option for patients with eye involvement. However, RAI is not recommended for patients with significant eye involvement.

It might also be worth consulting with your general practitioner *just* to rule out whether any other issues might be contributing to your symptoms.

[shasha]

#1176491

Thanks so much everyone! While I understand that medical advice can’t be given by laypersons – given my experiences so far, Graves sufferers seem to know more than many medical practitioners. My GP told me that 0.02 TSH was perfectly normal and that I didn’t need to pursue thyroid issues any further. He order MRI’s of my brain and wasted thousands of dollars and precious weeks that I can’t ever get back, while my disease progressed unchecked.

I would always consult my endocrinologist about medication changes and also use my common sense with anecdotal information – but it’s so important to me to hear other’s comments and observations in their journey down this terrifying and lonely road we are all on. Thanks again and God bless you all.

I am going to call my endo and see what he has to contribute – I’ll be back!

Shasha –

[Kimberly]

#1176492

shasha wrote:

My GP told me that 0.02 TSH was perfectly normal and that I didn’t need to pursue thyroid issues any further.

Wow, so sorry that you had to deal with this. Have you contacted the GP’s office to let them know what the correct diagnosis *should* have been? You never know…it might help someone else down the road!

That’s also a good example of why it’s important to get hard copies of labs and press the doctor for further information on any tests that are flagged as “out of range”. I think that sometimes things get lost in translation somewhere between the lab, the doctor, and the office staff — especially if results are delivered via phone.

[shasha]

#1176493

Thanks Kimberly – you are so right. Yes I did make sure that my GP’s office knew what the endocrinologist diagnosed. It’s always good to question everything when it comes to your health. You really are your own best advocate and no one knows your body better than you. There have been many times I second guessed what my body was telling me because medical professionals brushed off my comments. We are so lucky to live in a time when we have the ability to communicate and research and mine information on our own. Doctors have the training and the expertise – but you know what you are feeling inside your own body. It’s always good to ask questions and to speak up if think something doesn’t make sense.

Love this forum.

God bless –

shasha

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