Overactive thyroid back again!

[Lauren85]

Hi all,

I was diagnosed with hyperthyroidism in 2017 got treated it went away. 2019 it’s back, been out on 40mg carbizmol for the mean time while I’m waiting for my hospital appointment to see the specialist again.

This is draining me as Iv been signed off work for 2weeks and don’t get paid for being off which is adding more stress to my life!

But I wanted to come on here and ask anyone who suffers with hyperthyroidism If they constantly feel hot and sweaty? I never had this hot feeling that bad in 2017. I’m hot all the time especially when I’m up and moving about. Is this normal to feel like this? I suffer anxiety too which doesn’t help.

Your reply would be much appreciated thank you x

[pennyannie]

Hello Lauren

Please confirm back what you have been diagnosed with.

Carbimazole is generally prescribed for Graves Disease so are you with TSI or TRab anti bodies ?

[Lauren85 in reply to pennyannie]

Hi penny,

I’m not actually sure I don’t know much about this disease which frustrates me, I’m on Carbimazole because my ths is high and I have Graves’ disease, il find out more when I get my appointment x

[pennyannie in reply to Lauren85]

OK, you need a blood test showing positive for TSI and or TRab antibodies. Without this affirmation of antibodies, you do not have Graves Disease.

Elaine Moore's Book is a very thorough work, Graves Disease - A Practical Guide.

She wrote this when she herself found no help when diagnosed and treated in the late 1990's. She now runs a very well researched and respected website, on all things Graves for any Graves patients to access with open forums much like this amazing site.

It is stateside so medical protocol slightly different but well worth dipping into.

[Lauren85 in reply to pennyannie]

Thank you, I just wanted to know if hyperthyroidism causes your body to get hot 🥵

[Greekchick in reply to Lauren85]

Yes, being hyperthyroid can cause you to feel very hot, to answer your specific question. Hope this helps. However, do take the advice of pennyannie and others with respect to bloods and confirmation of not already done. All the best!

[Lauren85 in reply to Greekchick]

Greekchick thank you il go to my doctor for another blood test

[pennyannie in reply to Lauren85]

OK your thyroid is your the controller of all your bodily functions, including your physical, mental, emotional, psychological and spiritual wellbeing.

When hyper, you're hyped up, the body is running faster than normal. You may have a looser bowel movement, you maybe eating more than usual, though funnily enough, loosing weight, so that in turn may mean you vitamins and minerals are low, as your body is running too fast to utilise the contents of your food.

You're metabolising is running fast, you will be hot and possible anxious.

Imagine a water heater where the thermostat doesn't cut out when the required temperature is reached.

Hope that helps.

[Lauren85 in reply to pennyannie]

That’s how I feel, I need to wait 3weeks now for my hospital appointment, thank you for the advice

[Coconutty]

Yes it’s a symptom to be too hot and sweaty when hyper. 40mg is quite a high dose, do you have your test results? Get into the habit of getting copies and keep your own file. When is your hospital appointment? You need to get your GP to check all your levels monthly (not just TSH) in the meantime as you might go hypo quite quickly on 40mg. I was put on that much once when my FT4 and FT3 were sky high; literally 2 weeks later I was hypo.

[Lauren85 in reply to Coconutty]

The doctor will have my results, Iv been put on 40mg because my THS level is 33, I really don’t know anything about this and I’m so confused.

[Lauren85 in reply to Lauren85]

My hospital appointment will be another 3weeks I phoned up today 😩

[Coconutty in reply to Lauren85]

It is confusing, but you’ll get it in the end and it’s actually a must that you try and learn as much as you can so you can advocate for yourself. TSH is a pituitary hormone which prompts the thyroid to produce thyroid hormone when needed. In Graves/hyperthyroidism TSH is usually fully suppressed, so something like <0.01, because your thyroid definitely doesn’t need prodding! If you had a TSH of 33 then you would be hypothyroid or underactive, and you’d probably need replacement hormone levothyroxine or similar. The top of the TSH range is about 4.5ish. So are you sure TSH is 33, or do you think it’s Free T4 or Free T3? You really need to know to get the right treatment.

[Lauren85 in reply to Coconutty]

I really don’t know the doctor didn’t say much all I remember is he said my thyroid level is 33 and really high, endocrine told the doc to proscribe me with 20mg Carbimazole twice a day until I see the specialist which is about 3weeks time. They said it’s overactive not under. Il make an appointment with doc tomorrow and get more advice because they havnt been that great explaining

[Coconutty in reply to Lauren85]

It still makes a huge difference if 33 is FT4 or FT3. For example, if it’s FT4 and the top of the range is around 22 then 33 is not that high and 40mg would be a sledgehammer dose in my opinion. If it’s FT3 and the top of the range is around 7 then it might be more appropriate. You need to know exactly what’s been tested with ranges (the ranges can differ widely too). You could phone up your surgery and ask for the results to be printed out for you, or many surgeries now have online access.

[Lauren85 in reply to Coconutty]

Thank you for trying to help me, il phone doc tomorrow and ask to speak to them and maybe get bloods done again, the doctor knows better than me so 40mg Carbimazole mist be correct, I’m confused somewhere with the 33 il keep u updated. Thanks

[Coconutty in reply to Lauren85]

At this point I have a lot less faith in doctors knowing what’s best! They are (in my experience) almost without exception dreadful at dosing hyperthyroidism correctly, without swinging you around between hyper and hypo like a crazy rollercoaster ride. I’ve had Graves since 2012 and relapsed twice. My normal starting dose was 15mg, on one relapse I had 40mg when my FT4 was >100. Just watch for hypo symptoms is what I’m suggesting.

[Lauren85 in reply to Coconutty]

Oh jezz that’s awful, I hope you get better. I didn’t know what a thyroid gland was until I found out I have over active, thank you so much for your help honestly, il go to doc tomorrow and get a print out. And actually speak to them about my results, il definitely watch out for under active

[Coconutty in reply to Lauren85]

I’m fine! I only take 2.5mg now, the meds work really well for me. I just can’t come off them without relapse so c’est la vie, I’m in it for the long haul. Glad to still have my thyroid. 😊

[ling in reply to Coconutty]

Are you on a constant daily dose of 2.5mg? Do u ever have to titrate on and off when there are symptoms?

[Coconutty in reply to ling]

No I am constant on that. If anything I feel mostly hypo. I’m better just above range T4/T3, but on 2.5mg carbimazole my T3 languishes around 4 and T4 around 16/17. Just got a new Endo to explore things more, he’s also investigating hormone and histamine issues.

[Coconutty in reply to Coconutty]

I believe from my research you need a constant amount of carbi that is enough to exert its immunomodulating effects, so you can hope from antibody remission, and it’s better to add back Levo or similar when going hypo on low doses so that you’re not suffering from hypo symptoms. This is called add back therapy or modified block and replace. My last Endo refused to even discuss this with me, preferring to obsess over my TSH value (absolute folly in Graves’ disease). Hence the change in Endo.

[ling in reply to Coconutty]

Thank you for your reply. I like how u put this - "I believe from my research you need a constant amount of carbi that is enough to exert its immunomodulating effects, so you can hope from antibody remission,"

I've achieved TraB remission through consistent carbimazole therapy.

I am now considering titrating carbimazole dose to deal with symptoms, since a minimal maintenance dose seems to be ineffective during periods of stress.