Hyperthyroid - What else is there to do? - Thyroid UK

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Hyperthyroid - What else is there to do?

hautepanther
hautepanther

I’m a female, 33 years old, married, no kids. I discovered I had hyperthyroidism about 3 months ago. I’d gone in for an obgyn appt because I missed a period in March and then had a very light period in April. We were hoping to start getting pregnant. The doctor did a blood test that showed it was a problem with my thyroid levels. I never noticed, but apparently I have an enlarged goiter around my neck. It’s difficult to notice because I am on the thinner side but it’s definitely enlarged. I also started going to the restroom more often and my stools have become very loose, very diarrhea-like.

Blood test 1:

Free T4 4.0 | TSH <0.01 |Anti-TPO Ab 48.68 | TSH-receptor Ab 43.80 | Anti-thyroglobulin 11.92

I was given PTU to be taken 2x a day, but also decided to get a second and third opinion from different endos at different hospitals. I later discovered that PTU affects the liver quite a bit. The second endo told me to try methimazole at 10mg once in the AM. My blood test results from the second endo were similar but also tested for different things:

Blood test 2:

Free T4 3.66 | TSH 0.01 | FSH 7.22mIU/mL | LH 5.53 mIU/mL | Prolactin 17.15ng/mL

So last month (June) I decided to go with the methimazole (MMI) and see how I felt. I took it for 3 weeks and felt fine - heart rate was coming down (would be close to 100 at times), stopped having late night cravings and was feeling okay, until my entire body broke out in unbearable hives. I went back to the second endo who said I could be having an allergic reaction to MMI so she switched me over to PTU.

I decided to see a dermatologist who told me it’s uncertain whether the hives were an allergic reaction to the medicine, food or anything else. He gave me antihistamines and steroids to help. I took them for 4 days and stopped taking the MMI. The hives went away.

I really didn’t want to start PTU so I went to endocrinologist #3 for another opinion. The doctor said my hives were definitely a serious allergic reaction to MMI and not to take PTU because he guarantees I’d be allergic to that as well. He wanted me to do radioactive iodine and booked me for August 29th.

After doing research and reading, I don’t know how comfortable I am with RAI and permanently destroying my thyroid.

I would like to see if there’s a way to reintroduce MMI to my body and if it’s possible to take it alongside antihistamines. I read a published journal where a 15 year old girl also had severe hyperthyroidism and had a similar reaction to MMI as I did. The doctors offered PTU and RAI or surgery to her parents who refused all other options. So the doctors discussed with allergy specialists who then tried to reintroduce MMI to the girl through antihistamines and reducing her MMI dosage. It happened gradually, where she took her lowered dosage one hour after her night time antihistamine before bed for 10 days. And no symptoms appeared. They then increased her MMI dosage to twice daily. And then 2 months later, they lowered the dosage of the antihistamine. And a week after that, she was back on track with her normal MMI dosage without the antihistamine or any allergic reactions.

Has anyone tried something like this? I just don’t want to jump the gun and get rid of my thyroid completely, before trying other options if possible. I am also trying to eat healthier, sleep earlier and stress less...if that’s even possible.

I started 2 days ago with a 10mg Zyrtec tab 2 hours before bed, and 5mg of MMI an hour after. It’s day 3 today and so far, no hives. I know it takes awhile for the body to collect the MMI and react but I am hoping it will all go fine. Please pray for me and let me know if anyone has gone through similar thoughts. Or if you have any thoughts I’d also like to know.

4 Replies
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Hi Hautepanther.

Do you have the ranges for the blood tests, particulalrly the FT4 (at least, I assume you mean FT4, but could be wrong!) - they are typically in brackets next to the result. Also, did they test FT3 ?

PTU can have more effect on the liver than Methimazole/Carbimazole, but this side-effect is still considered to be rare (see link below). Anti-thyroids aren't without potential side-effects, but unfortunately, sometimes to get well, it's a balance of risks. Apparently PTU is less likely to cross the placenta barrier than Methimazole/Carbimazole, so it's more commonly prescribed for women during the first three months of pregnancy. It is also prescribed for people who react badly to Methimazole/Carbimazole (also mentioned in leaflet below) although some people are allergic to both. I had mild hives when I first started taking Carbimazole, but I found out pretty much by accident that they could be controlled with over-the-counter antihistamines, and after a few months they went away. (Carbimazole, generally the anti-thyroid of choice in the UK, is converted to MMI in the body).

btf-thyroid.org/information...

I'm guessing (because you have been on MMI, and your units of measurement look quite different from those we see in the UK), that you are probably based in the US, where they tend to be keener to push for RAI than in other places. Most of us would agree that it seems perverse to destroy a perfectly healthy thyroid if alternatives are available.

Given that you've already done some research, I assume you know that you will need to delay pregnancy for six months after having RAI. If you were able to take PTU, you would need to take that for a year to eighteen months anyway, although in theory, you could start trying for pregnancy while on PTU (not sure if you'd want to risk this). I don't know anything about that, but this may help:

btf-thyroid.org/information...

I guess it depends how bad your reaction was, but if I reacted badly to MMI, I might be tempted to try PTU (with antihistamines at the ready !)rather than lose my thyroid. If antithyroids really do prove impossible, I think it would also be worth exploring the option of thyroidectomy before deciding on RAI.

By the way, with the heart rate, and some other horrible symptoms such as tremor, beta blockers can often relieve these until the antithyroids kick in properly.

Valarian,

Thanks so much for your swift response and for the links. Here are my blood tests once again with the ranges. (I do believe Free T4 = FT4)

Why is this number along with FT3 of particular importance?

Blood test 1:

Free T4 4.0 (0.93-1.70)| TSH <0.01 (0.27-4.20)|Anti-TPO Ab 48.68 (<34.0)| TSH-receptor Ab 43.80 (<15.0)| Anti-thyroglobulin 11.92 (<115.0)

Blood test 2:

Free T4 3.66 (0.48-1.64)| TSH 0.01 (0.27-4.20)| FSH 7.22mIU/mL | LH 5.53 mIU/mL | Prolactin 17.15ng/mL (4.79-23.30)

*there were no ranges provided for FSH or LH tests

I also forgot to note that I got a 3rd blood test a month after blood test 2 with endo #2, about 1.5 weeks of taking methimazole the first time around and the results were:

Blood Test 3:

GPT 33 IU/L (5-40) | Free T4 2.36 (0.58-1.64 | TRAb 40% (<15)

*The endo said that the 40% shown for the TRAb represents the fact that for every 10 thyroid cells, 4 of them are inflamed

I’m aware of the preference for PTU during a pregnancy, but we are hoping not to be on any medications at all when/if the time comes...I’m actually based in Taiwan at the moment, so it’s also interesting how each hospital’s tests for different results and thus looks differently. Though I wonder if there was some positive effect of the methimazole after 1.5 weeks since my blood test 3’s FreeT4 was lowered. That was pretty much my light of hope in deciding to try antihistamines + MMI this time around, rather than go straight for RAI.

In Taiwan, I’ve heard from others around that there’s definitely more of a push for surgery and/or RAI, and I wonder if it’s simply because of convenience and $ for the hospitals. I’m hesitant, as I’ve heard of the repercussions both may have after and the regret there is that may go along with it.

Since testing out the antihistamines + methimazole, my HR these past 3 days (including tonight) have been in the 75-89 range vs. the usual 95-100. It’s hard to say if the anti-thyroids are working that quick, but I’m hopeful. My hives were pretty bad - it was remnicient of having chicken pox as a child. I’ve attached a photo in my initial post. Though, the child in the medical journal I’d mentioned earlier, had hives the first time. The doctors reduced her dose and after 2 days, she returned with worse hives + was almost anaphylactic, as her throat and tongue were affected as well. So I wouldn’t say I had it as bad as she did her second time. It was only after that, the doctors there helped her figure out other alternatives.

How long did you take your antihistamines + methimazole for? Are you still taking your anti thyroids? Are you euthyroid now with levels normal?

Sorry, I misread your original post. As you say, Free T4 is FT4.

Free T4 (or thyroxine) and Free T3 (or triiodothyronine) are the active, unbound levels of thyroid hormone circulating and available for use. FT3 is converted from FT4 in the body. They play a key part in controlling the metabolism, which is why when we are hyper, our metabolisms also speed up, leading to symptoms including racing heart rate and weight loss (usually temporary). FT3 levels can remain elevated even when FT4 is within range, so try to get this tested too if possible.

TSH, or thyroid stimulating hormone, is produced by the pituitary gland when thyroid levels run low as a signal to the thyroid that it needs to produce more hormone. When you have Graves' disease (which appears to be the cause of your being hyper), the antibodies start mimicking TSH, so the thyroid keeps producing FT4 and FT3, even when they aren't required. As you have an excess of thyroid, the pituitary doesn't need to signal for more to be produced, so TSH will typically be low to vanishing, and may remain suppressed for a few months even once you are euthyroid. It typically takes a couple of weeks for the effect of the antithyroids to become apparent, as the medication only inhibits production of new hormone, and your body will have to work through whatever is stored. It does look as if your thyroid levels have begun to come down, which is good, but your endo should be looking at the graph of progress, takng account of the starting level and the amount of anti-thyroid you are taking.

I was diagnosed/prescribed carbimazole last June, and was already taking antihistamines pretty consistently for hayfever. By August, hayfever was less of an issue, so I took antihistamines less regulalrly, but didn't have a recurrence of the hives (well, not much, maybe the odd patch once or twice). By September, I had stopped taking antihistamine altogether. My case wasn't as bad as yours.

I am euthyroid in theory, but still taking 20mg carbimazole/day, which is a moderate dose (I started on 40mg). Initially my levels dropped well, but I had a bit of a relapse at the end of the year. My levels hadn't dropped as much as the endo hoped between the last two tests, which together with the relapse, is why they are taking things steadily with dose reduction, and I'm fine with this. I expect to be on carbimazole until December (so eighteen months in total), then I guess we'll see what happens.

Not sure if I can offer any advice but, much like you, I came out in hives about 1 month after starting carbimazole. It was my only adverse side effect and I was feeling so much better in myself compared to pre-treatment. Doctors couldn’t say for certain if the hives were due to the treatment but were not prepared to take a chance, and so I was switched to the second choice drug, PTU. Personally, I had no problems while on it (around 14 months). Everyone has different experiences with every treatment, I think. Best wishes.

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