I've just been diagnosed with hyperthyroidism t... - Thyroid UK

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I've just been diagnosed with hyperthyroidism today. My GP said my thyroid levels are "off the scale". (See below)

Nadine2408 profile image
26 Replies

The daft thing is I went to see him because of my extreme fatigue, exhaustion and lethargy. (As well as a racing heartbeat which i assumed was anaemia). I was stunned when he told me I had an over active thyroid as I thought this would have caused the opposite symptoms - a sort of manic energy. Has anyone had the same experience/symptoms? Will the carbimazole help to restore my energy levels? I feel like an old woman at 51!

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Nadine2408 profile image
Nadine2408
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26 Replies
aqua profile image
aqua

Hi,

I found that when I started being hyperthyroid I did have a manic energy, extreme anxiety and racing heartbeat then I would feel tired as all this would wear me out!.. The carbimazole will make you feel better - I was had very high results and my heart was going like the clappers - it took about two weeks before I could cut out using beta blockers (as the carbimazole takes that long to start working. I also had a lot of other symptoms like my legs swelling for a while - it was awful.. I am sure you will feel better once the carbimazole starts working - but make sure you are monitored every 8 weeks or so.

helvella profile image
helvellaAdministrator

Do you have any of your actual blood test results? Would be interesting and may hep us to help you.

Rod

Nadine2408 profile image
Nadine2408 in reply tohelvella

No, I don't, my GP had them on the screen in front of him; 2 years ago I had a blood test which said it was slightly high - I told him about this and he said "well this time it's off the scale". He also took my pulse which was 120 and prescribed bisoprolol and carbimazole and referred me to endocrinology at our local hospital. I will find out next time. Seeing GP again in two weeks. Thanks very much. Hope one day I can be as helpful to others!

helvella profile image
helvellaAdministrator in reply toNadine2408

I encourage you to start collecting all blood test results as you can. You should be able to get your more recent ones from your GP/surgery. Ask for prints as then you don't need to worry about writing them down.

Always get the reference ranges.

Rod

Nadine2408 profile image
Nadine2408 in reply tohelvella

Good advice thank you

Nadine2408 profile image
Nadine2408

Thanks so much for your advice and support, greatly appreciated.

shaws profile image
shawsAdministrator in reply toNadine2408

also include the ranges for your blood results as labs differ.

Nadine2408 profile image
Nadine2408 in reply toshaws

Ok thank you.

editfmrt profile image
editfmrt

I had the opposite symptoms just like you - totally and utterly exhausted, freezing cold and lethargic. That was because I was misdiagnosed for several years. When hyperthyroidism gets very advanced and untreated things start to 'pack up' and then some of the symptoms mimic hypo. I still had some of the hyper symptoms too e.g. resting pulse of 140 was one. The head endo (professor) looked at my results and gasped, nudged his colleague to take a look and for a few seconds they both stared at me like they were viewing a corpse. I was beyond caring and never did find out what my results were. It was only in hindsight that I eventually realised I had spent years charging around before I virtually ground to a halt - that hyper state had become part of me and I thought I was super woman!!!

So, in answer to your question it sounds like you have got to the burnout stage and that is possibly why you have some of the hypo symptoms - it was for me anyway.

Nadine2408 profile image
Nadine2408 in reply toeditfmrt

Thank you - it's so comforting to hear somebody else has had the same experience. I feel like I'm at the bottom of Everest trying to climb up it every morning just to get into work! Thanks x

editfmrt profile image
editfmrt in reply toNadine2408

You have my heartfelt sympathy Nadine. I did get better eventually but if I had access to sites like this at the time I feel sure progress would have been much quicker. I had no idea just how bad the treatment, support, monitoring and lack of knowledge was back then and I'm sad to say I don't see much evidence of it having improved either.

That truly means that patient knowledge and control is the most important thing to getting yourself well. No-one else cares about your health as much as you and your family.

Keep strong and use the support from here to the maximum to help you on your journey and you will get there.

Take care xx

editfmrt profile image
editfmrt in reply toeditfmrt

Meant to say I couldn't agree more with what others have said - get copies of ALL your results and don't take no for an answer. You might come up against resistance from the so called experts but any doctor worth their salt would not get protective about YOUR results and would support you on your quest to jointly manage your own health. Sadly, they are few and far between.

glo42 profile image
glo42

Oh dear, it's not good. I feel exhausted already. This hyperthyroid state affects so many of our vital organs. I have had this for just 2 years but now realize that I also had been charging around in 5th gear for a very long time before going to see the GP with exhaustion, racing heart, insomnia, aches and pain in my joints and shakiness in my hands and many more symptoms. I can recognize them now as being hyperactive but just made excuses for my age (was 68 back then).

I have learned to listen to my body and I think that you might have to do the same and try not to push yourself any more. The Carbimazole will work but give it time and ask for the blood result print outs as suggested. There are many kind people much more experienced than I am who will guide you through your long journey. Time to take care and pamper yourself methinks. Gentle hugs for today.

JemBron profile image
JemBron

I would agree wikth the others who have posted about getting your blood test results. I would also urge you when you see either your Endo or gp next to ask for a full blood profile and adrenal (if they will) as this will give you a much better overall picture of your current health status. You may have adrenal problems if you are exhausted with hyper blood results. You may also be deficient in minerals/vitamins.

Carbi will help....over time. You will be able to do a lot for yourself improving diet and including supplements.

Take care.

Carole

45althea profile image
45althea

Of course I agree with all the advice offered and can only stress the importance of managing stress, overhauling your diet and introducing vitamins/minerals after you are sure from results you are deficient.

Unfortunately, Carbimazole did not work for me and after becoming severely hypo after taking it for just a month, it took years to restore my health. The nature of the condition means it is very unique to the individual which is why it is so important to have an awareness of blood results and the correlation with your symptoms which you will gain over time.

Until then, continue to ask questions I found this site and other really helpful with disseminating the plethora of medical information out there.

Take very good care of you.

greenginger profile image
greenginger

Hi do get your test results, keep a daily diary and note any symptoms or problems even if unsure if it is linked. For example, sore joints and itching are common amongst loads of other stuff.

Keep a note of endo and GP's comments and dates of appointments and blood tests.

Also get your GP to check your iron/folate levels, vitamin B12 and D and ask for an antibodies test to help confirm whether autoimmune or not.

Plus do note that eye problems are common as is a goitre.

All the best and do try to chill out and not get stressed.

Nadine2408 profile image
Nadine2408

Thank you to everybody who has responded to my question with so much support and advice. I figured my aching joints were just age and had no idea why I was so itchy all the time! I am trying to let the housework slide too. The hardest thing is explaining to people why you appear to have ME when you have an over active thyroid - it certainly confused me! Thanks everyone.

kashmash profile image
kashmash

Hi Nadine, Just a small extra as this site has so many wonderful people who respond and help. I am Hyper and take Carbimazole, it most certainly helped me, had the same symptoms as you. But when I went to my first Endo appointment I took a close friend who took notes..I knew I would not get all the things in my head and it is important to know all the facts. :o) And as everyone has said just ask for your blood work results, you will become an expert on them!! It is your right to have them. Also allows you to see what is happening. Wish you well and keep taking thw pils.

Nadine2408 profile image
Nadine2408 in reply tokashmash

Thanks so much. Just wondering, roughly how long did you take the carbimazole before you felt anything like "normal" again?

frazzleju profile image
frazzleju

hi - I've recently been diagnosed as hyper too - and yet, like you I was absolutely exhausted, out of breath after climbing stairs, etc. I think, like others have said, that my body had just come to the end of its tether! I've been on carbimazole for a week and have a hospital appt beginning of May so hopefully we'll both have answers and feel a bit better soon, Ju xxx

Nadine2408 profile image
Nadine2408

Hi guys, thanks for your replies. I've been on carbimazole a week and I feel a fractional, marginal change already. I'm not quite as out of breath when I go upstairs (so I feel 85 yrs old instead of 90...) and I can get from my car into work without sitting on a bench halfway to get my breath back! And I'm talking a distance of about 300 yards! Baby steps, and most of all, cause for optimism. Also when I think about it, last week I was off work, because I literally physically couldn't have done it. I was in bed and couldn't even get down to the kitchen to make a cup of tea, and I was terrified, wondering what the hell was happening to me. I have managed to be in work every day this week, although it wasn't easy to say the least. I am lucky I have great colleagues and a lovely boss. Ju, keep in touch and let me know how you get on. We can compare notes. Take care xxxxxx

Jan49 profile image
Jan49

This may not make sense to anyone under a certain age but when I was diagnosed with overactive thyroid my doctor told me that if I were a car it would be like having the choke out permanently. The engine would be permanently revving, causing the sweating etc but would quickly run out of fuel, hence the falling asleep in the middle of a conversation. I thought it was quite a good explanation at the time, also the only useful thing he ever said to me.

carefulkate profile image
carefulkate

Welcome to the hyperthyroid club I joined 2 years ago now had 10 months of carbimazole and then 10 months of being well It has just started to return a it now but my bloods are still within normal limits so trying to reduce stress eat well and find adrenal supplement I am not allergic to It is a journey that is individual but with this site you are never alone xxxHope you continue to improve daily

misky profile image
misky

Hi Nadine,

When I (36-y.o. female) was diagnosed in March 2012 I was also very exhausted and so out of breath I couldn't even talk to the GP. My FT4 was also, literally, off the scale. The GP said it was > 100 (ref. 10-22) and when I asked for an exact number he said they stop measuring above 100 as then it's already obvious it's pretty bad. I was put on 15 mg carbimazol, and propranolol for the high heart rate and sweating, but it took a couple of weeks before I could walk and move normal again. The first week I couldn't even make myself a cup of tea or stand upright. It was really tough, but after a month or two I felt much better. Try to be gentle to your body, don't work too much and rest a lot. This was a big shock for your entire system and your body (and maybe also your spirit!) needs time to recover. All the best!

Nadine2408 profile image
Nadine2408

Wow misky. You can't imagine how well-timed this was. I had managed a full week at work last week (which was soooo hard) then managed to get some housework done over the weekend (hadn't done any in weeks and weeks) and felt really cocky. Got knocked right off my perch this morning! Serves me right I think, for underestimating the mountain I've got to climb. My thyroid levels have been climbing for 2 years (and I ignored it -never went back for that second blood test when it first came up in May 2011- felt fine. Why bother??? Ha!) managed to get to work this morning but was feeling grim and strange and very very weak again. Suddenly it hit me just how physically, mentally and emotionally shattered I am. So drained and - for some reason - sad. So I am back home in bed. This thing has been building up for 2 years, so it's obviously not going to clear up after taking tablets for just 2 weeks! I have had a holiday booked for a while now, before I got this ill. I am supposed to be flying to Rhodes on Thursday for a week. I just want to have enough strength to get there because I think it will do me so much good. Read, sunbathe, eat - lots of Greek salads. I'm struggling with self-image too - I'm tough, me! I'm the one that does everything and helps everybody! Good old me! Really having a hard time letting go of THAT! Very embarrassing getting the lift up to the office instead of the stairs with everyone else. Never noticed how Everest-like stairs are until now. Thanks for your words and thoughts. So needed. X

cecile54 profile image
cecile54 in reply toNadine2408

Hi Nadine! So sorry to hear that you are unwell with hyper thyroid, I suffered the same when diagnosed 9 years ago. I also took Carbimazole but was so itchy was put on propylthiouracil. I just want to mention to you that if you ever have to use this drug (nicknamed PTU by doctors), be careful to the side effects. I was diagnosed with liver damage because of it, so make sure you ask every year to be tested for liver functions.

Also you should ask your GP to refer you to a cardiologist. I didn#t do it when I was so sick and was told off by my French doctors who explained that when you take blockers to reduce the heart beat it should be monitored.

I hope you feel better quick. Best of luck. Kind regards.

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