[obnursenh]

#1060343

(This has been copied/pasted from another forum I post in, where not everyone knows about Graves and/or treatment option, so please forgive me if I share some details you already know)

Land of confusion over here.

So the itching that started overnight Tuesday was only minimally managed overnight at work with benadryl. This morning when I got home I took a claritin AND a benadryl before going to bed. I did NOT take the methimazole, but did take the inderal (which manages the cardiac symptoms of the disease).

The ARNP called today and left a message to call her nurse to get information about the possible issue between bactrim (which I am allergic to) and methimazole (which I am taking now).

One pharmacist told her that it is not an issue, another told her it could possibly cause an issue. Bactrim and methimazole both contain sulfur which is the component in bactrim that generally causes people allergic reactions; in fact many people state across the board they are allergic to sulfur/sulfa medications because of this.

Her suggestions are as follows (choose one!):
1) continue on methimazole and take a non-drowsy antihistamine daily to manage the itching, hoping that it will pass as a side effect rather than a true allergy.
2) switch to PTU (which also contains sufur and also carries a higher risk of liver damage)
3) skip the meds altogether and proceed with radioactive iodine to destroy the thyroid or have a total thyroidectomy to achieve the same result.

Here are my concerns:
1) benadryl AND claritin together are barely managing the itching. benadryl alone did nothing for me when I took it at 4 a.m. Also, if I keep taking the drug will this prolong the itching if we later determine it’s an allergy – it takes a few weeks to ramp up in your body, so will it take a few weeks to dissipate? If so, by continuing to take it, I am only prolonging the itching – and Amy again I don’t know how you manage but I for sure know there is no way I can be itchy for weeks. On the other hand, if it does pass then I get to maintain my thyroid and continue on the least-invasive treatment option.
2) PTU may not be any better, since it also has sulfur. I am also concerned about liver damage, especially as my liver enzymes have already been elevated (probably by the disease process). I think I am ruling this one out completely.
3) getting rid of the thyroid is no joke either. Radioactive iodine is, well, radioactive. And carries risks associated with that. And thyroidectomy carries risks associated with surgery as well as risk of damaging the parathyorid glands and the vocal cords. On the other hand, removing or destroying the thyroid eliminates the entire problem, and then I would be on synthroid forever to mimic true thyroid function. Synthroid has been in use for ages and is shown to be a safe and effective treatment for hypothyroid (which I would be if I had no thyroid) when regulated properly.

I am so overwhelmed right now.

And I’m frustrated because I was just starting to feel better, finally…

I’d love to hear your thoughts.

[Ellen_B]

#1182039

Hello,
I have not had the experience of taking methimazole or having an allergic reaction. I am just going to ask you questions—hoping that someone else who has been on the medication will report their findings.

What dose are you taking of your methimazole? What are your thyroid hormone levels?

I understand that some side effects for methimazole are dose related—that is when one is able to lower the methimazole dose the side effects go away. Your doctor would be able to tell you what your levels are and whether it is desirable or wise for you to lower your dose.

I hope you start to feel better very soon.

Ellen

[Ellen_B]

#1182040

Hi again,
I just saw your earlier posting—that your dose was lowered yesterday. How long does your doctor think it will take for the new dosage to be effective?

More questions! I hope you can get an answer.

Ellen

[obnursenh]

#1182041

Thanks Ellen.

The ARNP and the doc she consulted with said that if it’s a side effect it will go away in 2-3 weeks ACK! If it’s not a side effect (i.e. doesn’t go away in that time) then they would call it a true allergy and d/c the med, which would hopefully be out of my system in, I think, 36 hours, and hopefully the itching would then subside. She was very careful to reiterate a couple of times that the information is no guarantee – the itching may stop sooner, or (God help me) may go on longer than that. She did not feel it was dependent upon the dose. Though I am having labs again in 4 weeks.

Last week’s lab results:
TSH – remains suppressed
T4 – 15.6 (down from 18.9)
T3 – 230 (down from 403)

I started taking Claritin AND benadryl on Thursday and it does make the itching more manageable for the moment. I told the ARNP that I would like to sit with the information we discussed for the weekend and make a decision based on how well I can tolerate the itching. She sounded okay with that. We did rule out PTU as an option for me, based on that it also has sulfa (like methimazole and bactrim) coupled with the greater risk for liver damage. So if I opt out of this I will move on to RAI or TT.

I guess we’ll see how it goes…

-Jennifer

[LaurelM]

#1182042

Hi Jennifer,
During my first bout with GD I took Methimazole for about 8 months when I developed hives. At the same time we also discovered that I had just conceived our 2nd. My endo was pretty convinced it was an allergy but regardless, I was switched to PTU because of the pregnancy. The hives disapeared within a couple of days of changing meds. I was able to stop the little bit of PTU I was keeping down (thanks morning sickness) just a few weeks later. I stayed in remission after delivery for about 6 years.

When I came back out of remission, I was restarted on PTU. After over a year and ot being able to maintain on a low dose, I opted for a TT last August. I am still working on finding my replacement dose but I feel like it was a good decision. My endo was open to keeping me on the PTU but recommended the TT over RAI as we have lots of excellent surgeons in our area. He was also OK with RAI if that was my preference.

I have a good friend who had thyroid cancer and got to do both RAI and TT. From her perspective, both proceedures were fie and she didn’t recommend one over the other. I just finally wanted the darn thing out and to be able to start replacement right away rather than waiting for the thyroid to die off after RAI.

The right decision will be the one that feels best to you in consultation with your medical team. I remember being so overwhelmed when I was first diagnosed. There was so much to process and being hyper didn’t help with that at all.

Best wishes,
Laurel

r

[Raspberry]

#1182043

Hi obnursemh, I read above that your dose got reduced that is great. The terrible itching and hives is incredibly common in the 2-4 week range when first on methimazole. Unless your lips start swelling up in which case you had to the ER, you aren’t in a crisis state just an uncomfortable one! My endo said that the itching is a result of the thyroid hormones sudden shift downward. That said I was seeing a different endo when I got the itchy/hives and was switched to PTU which was fine for me for a year. You just need to get a liver baseline before you start and get liver tests each time for monitoring. The liver risk is actually not high unless you are being given a high dose of PTU. I actually went back on methimazole at a maintenance dose and no itching or hives ever came back.

[adenure]

#1182044

Hi!

I decided to stop by and see what’s going on on the forum! Haven’t been here in awhile. I noticed your post. I didn’t have the type of allergic reaction you had to methimazole, but I had the liver issues with it. My enzymes escalated to 8 times the normal range in just 7 weeks of being on 5 mg daily- so I had to stop taking methimazole that night (as the on call doctor told me on the phone). I was so freaked out being on no medication at all, but PTU was not recommended and methimazole was out of the question.

So… I opted for surgery. Six weeks later I was able to have my thyroid removed and have been doing pretty well since then! It’s been a year and almost 9 months since my surgery. I’m much healthier now than I was when I was hyperthyroid. I take Synthroid- 112 mcg. five days a week and 100 mcg twice a week. That combination works great for me. Has my TSH around 1.5. At 112 mcg everyday my TSH was around 0.29- so a little too hyper. I understand the overwhelming fear/ frustration with all of this. I cried and freaked out quite a bit that first night being off methimzole; the LAST thing I wanted was to slip into hyperthyroidism again. That was the scariest time of my life I think- being hyperthyroid.

In a way, even though I am dependent on Synthroid for life, I am relieved to know that I’ll never be hyperthyroid again. It’s good to know that. I have to realize too that there are many people out there dependent on daily medication to live- whether it be for diabetes, asthma or anything else.

I hope the itchiness goes away for you, but if it doesn’t, know that surgery isn’t a bad a option if there are no other options.

[obnursenh]

#1182045

Thanks Alexis!

The itching has gotten much better. I took claritin for a few weeks, but have been off for a few days. Still kind of itchy here and there but NOTHING like it was!

Last round of labs showed continued (small) improvement, and my dose was maintained at 15mg once daily. Another set of labs at the end of the month.

Staying the course for now. Someday I will probably have to have RAI, but for now if I can avoid it I’m good with that!

-Jennifer

[dhuffman63]

#1182046

I don’t have any itching but my left arm from my elbow down is in turns numb, cold, hand feels like it’s burning – similar to when a blood pressure cuff is on and fully inflated. This start Monday with my pinky feeling numb.

I saw my endo on the 29th – she felt my thyroid and said the entire thing was enlarged and I have Graves. They took blood for a FT3 and FT4, and the TSI. My original TSH on 3/11 was <0.01 (0.35 - 5.00). My heart rate was hitting 200. She put me on 10 mg of methimazole once per day and 25mg of metoprolol 1/2 tablet twice a day.

Tried calling the endo but no return call. I’m not sure if I should discontinue and see if my arm clears up or try again tomorrow to call the dr.

Any one else have a similar experience?

[Kimberly]

#1182047

Hello – Hopefully, you will get some responses here, as I’m not familiar with that as a side effect of the meds. That has to be scary, though…if it continues, I wouldn’t hesitate to visit an urgent care center just to get it checked out.

Take care!

[LaurelM]

#1182048

Hi dhuffman63,

Raynaud’s Phenomenon comes to mind as a possibility for the cold and numb sensation. Raynaud’s is a loss of circulation and can be minor or serious. There are two kinds. Primary is just the disease by itself. Secondary can be a side effect of a medication. Certain beta-blockers can have this side effect. Be sure to read the entire insert from all your prescriptions to see if this is mentioned. Thyroid conditions are also associated with Raynaud’s. You should follow-up promptly with your Dr.

Best wishes for a speedy resolution.
Laurel

[dhuffman63]

#1182049

Finally heard back from the doc. Quit the Lopressor last night to see how my hand felt – no change still numb. Doc told me to stop the Tapazole for now and see how my hand feels over the weekend and if it’s better start back on only 5mg rather than the 10mg. She gave me my results but I don’t have the actual report yet but my FT3 was 3.92; FT4 was 3.71; said my TSI indicated graves along with my thyroid being enlarged; and I was in menopause too. Lucky me. Once I get the report I’ll include the ranges.

[Author]

Posts