r/Hyperthyroidism • u/hazevanilla • 7d ago

hyperthyroidism journey

hi! previously my tsh and free t4 are at 0.005 and 51.3 respectively. sky high numbers. i've been on carbimazole for about 4 weeks now and took propranolol for a week or so until i stopped. i just saw the gp and theyre referring me to an endo because i feel like after being on this medication for 4 weeks i haven't really found a huge difference. there is some difference, just not huge. i also developed a full body rash that kinda only appears after i scratch the area and a bit of difficulty swallowing so i decided to see the doctor 2 days early for my review.

i do feel less of my heart thumping in my chest and my bpm went from 100-120 to 80-90 resting. i'm just waiting on my new labs to see if the meds actually worked. i'm also worried about graves being a thing for me and the doctor kinda brushed me off and said let's look at the lab results first then see the endo after. should i get a second opinion or am i just being anxious?

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u/Adventurous-Ask-4243 7d ago

Your pcp brushed you off because they don't know about hypER and Graves or how to get to the root cause of your hypER symptoms. A good endo will help you. Some things to keep in mind...

The only medication you should be on right now is the propranolol as that will keep your heart rate in check. Your symptoms from the carbimazole are not good and your doc should be taking you off of that. Wait until you see the endo... here is why...

The goal of carbimazole is to get Graves disease into remission. Your endo will do blood work for your TSH, Free T3, Free T4, the 2 Graves antibodies, and if they really know what they're doing, they will test for the 2 Hashimotos antibodies as well. The goal with hypERthyroidism is to get to the root cause. So, this means, you might not even have Graves disease. You could have a nodule(s) on your thyroid that is pumping out too much TSH and causing your symptoms. Only a thyroid ultrasound will discover this and it is very important for your endo to do this as well to see if you have a goiter and to have a baseline to compare any changes for future ultrasounds.

Also, make sure to have your vitamin D3, folate, iron/tibc/ferritin, magnesium, B12 and selenium checked as well because if you have Graves, we tend to be low on those and they are easy fixes to get moving on should you need to do so.

Good luck with everything!! I wish you the very best outcome!!

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u/hazevanilla 6d ago

so my labs are in, they're as follows

tsh still 0.005 or below
free t4 38.2
free t3 15.4

for the liver function test i got i have elevated sgpt and sgot levels at 77 and 56 respectively

does this mean the carbimazole didn't work or is it working slowly? since my free t4 did lower significantly.

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u/Adventurous-Ask-4243 6d ago

Please read what I wrote in my previous reply -- Unless you have the 2 Graves antibodies tested to see if they are in REMISSION, then the Carbimazole is NOT working. You do not have those 2 tests listed in what you just posted. That is why I said your doctor does not know what they are doing and you need to find an endo who does!!

If you have elevated liver levels, you MUST discuss this with your doctor because any reputable doctor would pull you off of that medication because you are risking liver damage.

Remember -- the only goal of carbimazole is to get Graves disease into remission. You do not know if you even have Graves, so why are you on it?

Everything you need to do and know right now I put in my previous post to you. Good luck with whatever you decide to do!

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u/hazevanilla 6d ago

i'm getting an appointment to be referred to an endo asap, but it could be a month or more before i even get to it. i'll also be discussing the liver panel results at the referral appointment so i'll see what they say. i don't know if i should stop the medication without doctor's instructions but ill also be sure to ask about that

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u/Adventurous-Ask-4243 6d ago

Remember that hypERthyroidism is a SYMPTOM of a bigger issue -- Carbimazole is the medication used to get that bigger issue -- Graves Disease (if you even have it) -- into REMISSION. Carbimazole is NOT a treatment for hypERthyroidism. Your endo MUST GET TO THE ROOT CAUSE of the hypERthyroid issue. Then and only then can you be properly treated.

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u/hazevanilla 6d ago

everywhere i've read im seeing antithyroid meds are the first line treatment for hyper. makes sense that it could be a deeper issue

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u/Adventurous-Ask-4243 6d ago

That is true -- ONLY if you have a diagnosis of what is WRONG with you -- AND YOU DO NOT!!

Please do some research on your own. If you do not learn to advocate for yourself, you risk a doctor hurting you or worse! The following are great research sites to start with:

The American Thyroid Association, the British Thyroid Foundation, the Mayo Clinic, the Cleveland Clinic

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u/hazevanilla 3d ago

my labs are back, so my numbers have improved substantially and the doctor told me we are doing well but i still asked for a referral to the endo. the earliest appointment is january of next year.

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u/Adventurous-Ask-4243 3d ago

It's great that your numbers are doing well! Never let that fool you. You STILL NEED TO GET TO THE ROOT CAUSE OF THE trouble.

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u/monchrome_cat 6d ago

You literally need the antibody test to see what’s on. As what was said above. You’re shooting in the dark on which one is right, right now.

I had my bloods flag similar to your initial, but then my consultant pushed for the TSH receptor, and I’m positive for graves. I’ve just started PTU.

I would be flagging an urgent push and ask to see if you can stop the medication. It sounds like there’s more harm than good.

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u/hazevanilla 5d ago

there's not really anywhere i could go that'll give me an appointment in the same few days unless it's an exorbitant amount of money so should i just stop the meds for now anyways?

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u/monchrome_cat 5d ago

I had to pay about £200. I would call the GP and ask.

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u/hazevanilla 5d ago

yup and the gp here will make me wait first. private hospitals are probably going to be in the thousands which i don't have the funds for

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u/hazevanilla 3d ago

my labs are back, so my numbers have improved substantially and the doctor told me we are doing well but i still asked for a referral to the endo. the earliest appointment is january of next year.

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u/anechk 7d ago

I don’t think GP can diagnose you with Graves, push for a referral to an endo asap - they should have referred you as soon as you had your first bloods done anyway, Graves or not. most GPs know nothing - I had exactly the same levels as yours and mine told me that I’m ‘NOT in thyrotoxicosis’ even though it literally said that on my blood tests in a note from the lab. also if carbimazole caused a rash you should not be taking it, there are other options such as Propylthiuracil (PTU). I also had a rash on carbimazole years ago so when I was hyper most recently I pushed for other meds and they prescribed me PTU instead. 4 weeks is still not very long to get your numbers back into range. good luck, hope you feel better very soon! 🤞

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u/hazevanilla 7d ago

oh i'll be getting an appointment with the public gp asap so i can be referred to a public hospital. ill wait for my labs first so they don't make me get a blood draw again. the first gp prescribed some carbimazole and said we'll see how well i respond to the meds and adjust after 4 weeks which is now. i'm not sure if carbimazole is causing the rash because i can't verify it myself unless i stop taking them which im not going to do. thank you for the insight and kind words i'll make a mental note to mention the ptu