Newly diagnosed hyperthyroidism : Hi All - I have... - Thyroid UK

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Newly diagnosed hyperthyroidism

Spaniel123 profile image
34 Replies

Hi All - I have been to see my gp on numerous occasions complaining of extreme tiredness, low mood, irritable, trembling etc. He eventually sent me for a blood test (after telling me to change job!). He said I have hyperthyroidism - I don’t have details, but will ask next time, He has prescribed me with 10mg carbimazole and told me to book blood test in month and return after that time for results. I have been to see him again and he then told me I have Graves, but again, no details! I am now three weeks in taking the meds. Still feel exhausted most of the time (he has signed me off work for a month). Is this normal? Should I be asking more info? I feel in limbo and almost feel a fraud for feeling the way I do!

I’d be really grateful for anyone else’s perspective on this!! Many thanks.

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Spaniel123 profile image
Spaniel123
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34 Replies
jimh111 profile image
jimh111

Ask for a copy of your blood test results. You may not have Graves'. 10mg is a small dose of carbimazole, probably too little. You should be given a referral to an endocrinologist cks.nice.org.uk/hyperthyroi... .

Spaniel123 profile image
Spaniel123 in reply tojimh111

Thank you. I will certainly get a copy of my results.

greygoose profile image
greygoose

You most certainly should be asking for more information. You should be asking for a print-out of your blood test results. You need to know exactly what was tested, and exactly what the results were. If he hasn't tested the antibodies, TRAB or TSI, then he has no business giving you a diagnosis of Grave's - or even hypothyroidism. He doesn't have the training to know the difference between Grave's and Hashi's. And carbi is not the right treatment for Hashi's.

Ring reception tomorrow - better than asking the doctor for results - and ask them to print you out the results and ranges of all your blood tests so far. Say you will pick them up at their convenience. I don't want to scare you, but that's the way it is, I'm afraid.

Spaniel123 profile image
Spaniel123 in reply togreygoose

Thanks! Reception sounds like an excellent idea - better than bothering my dr who seems like he’s getting rather annoyed with me!!

greygoose profile image
greygoose in reply toSpaniel123

They don't seem to have much patience. And, they don't seem to like explaining things. And I think they'd prefer if you didn't have access to your blood test results! But, the law says you do, so take advantage of it. :)

Spaniel123 profile image
Spaniel123 in reply togreygoose

Do you know him??!!

greygoose profile image
greygoose in reply toSpaniel123

lol Not personally, but there are a lot like him around!

Spaniel123 profile image
Spaniel123 in reply togreygoose

I can imagine! 🤣

Nanaedake profile image
Nanaedake

You're not a fraud. If your thyroid is out of whack, you will feel very unwell. Doctors know a little about thyroid but mostly not a lot. If you are hyperthyroud you need a referral to the hospital because your GP cannot do all the tests needed. Do not wait a month. Go and see another GP in the practise and ask for a referral. At the hosp. Make sure they test TSI and TRAB antibodies as well as TGab and TPO antibodies. Also TSH, FT4 and FT3. You need to get and keep a copy of the results to get a proper diagnosis. When you have the results, post here for further help.

Spaniel123 profile image
Spaniel123 in reply toNanaedake

Thank you. Unfortunately the practice I attend is a one man practice is it’s a case of facing him I’m afraid! As another helpful responder suggested, I will firstly contact reception for my results and take it from there.

My dr is quite opinionated and doesn’t like being questioned!!

Thanks again.

Nanaedake profile image
Nanaedake in reply toSpaniel123

If you can't ask your doctor questions, you could at least ask him to explain better and ask him what evidence he bases the diagnosis on. You could ask what further tests are available to confirm the diagnosis and whether the tests need to be done at the hospital. It might set the ball rolling. Perhaps reinforce that you are trying to take responsibility as you cannot afford to lose your job xx

Spaniel123 profile image
Spaniel123 in reply toNanaedake

Sounds sensible, thank you. x

pennyannie profile image
pennyannie

Hello Spaniel,

Totally agree with all that has been said, and you are not a fraud.

Whether with Graves or not, your body clock is running fast and you will be tired and feel as though you're run the marathon in 4 minutes flat. Your metabolism maybe running fast and it's essential, whether with Graves or not, that you keep maximum strength and need to have optimal ferritin, folate, B12 and vitamin D to carry you through this period.

Just want to offer a website that might give you some information tonight, as to Graves Disease. Elaine Moore has the disease and has a very comprehensive, well researched and respected website on all things Graves. Just a little homework, should you need it for a better understanding of the disease, if you do actually have the TSI and or Trab antibodies, we wait to find out.

Spaniel123 profile image
Spaniel123 in reply topennyannie

Thank you, so kind of you to respond. I will have a look at her website and have a read. Thanks also for the reassurance about feeling a fraud. I suppose it’s because you can’t actually “see” it!!

Thanks again.

pennyannie profile image
pennyannie in reply toSpaniel123

" You can't actually see it " so true !!!!

Whether hyper or hypo - I'm referred to as a conundrum - so don't worry !!!

I'm with Graves Disease, post RAI treatment, now with Graves and thyroid eye disease and hypothyroidism.

Spaniel123 profile image
Spaniel123 in reply topennyannie

Being described as a conundrum by professionals doesn’t give you much faith does it?

sonship_quality1029 profile image
sonship_quality1029 in reply topennyannie

Could you please explain what Thyroid Eye Disease is? I've never heard of it, and I would like to talk to my eye dr. about this. I was, incorrectly, diagnosed with Glaucoma, but she realized that my past tests proved the opposite. I'm on a wait and see kind of thing now.

pennyannie profile image
pennyannie in reply tosonship_quality1029

Hello sonship

Rather than " hijack " someone else's post, suggest you start your own post, giving some brief details of yourself and asking forum members of your health concern.

DonnaT86 profile image
DonnaT86

Defiantly get a copy of your blood results I was diagnosed with graves disease almost 3 years ago now, I was breathless, exhausted all the time, my heart was racing, very sensitive to heat, lost weight the list goes on, when I had my first lot of blood results my T3 and T4 were high and TSH was very low which indicates hyperthyroidism but to determine if you have Graves disease more blood tests Need to be done to determine that also i was sent for a Ultrasound scan which showed up I had multinodular goitre, have you had a Ultrasound at all?

You defiantly need to be referred to a Endocrinologist and for hyperthyroidism they do normally put you on Carbimazole and they normally monitor you with regular bloods to see how it's working.

I really feel for you it does make you feel really unwell so hope they sort it quick for you.

Spaniel123 profile image
Spaniel123 in reply toDonnaT86

Thank you Donna. As I said yesterday I’m going to contact my gp today and ask for my results. When I first when to the gp he just said that I had an overactive thyroid and that “might explain” why I’m feeling so low (I’m also on HRT and anti depressants). When I went to see him again for more info he just said that I would need a blood test every year. When I asked about Graves (I have experienced problems with my eyes earlier this year) he said I definitely had Graves!! But no mention of a referral to an endocrinologist!

Excuse me if this sounds like a stupid question but can this just “go away” after some medication? Is this why he hasn’t mentioned a referral to a consultant? Again apologies for my ignorance on this matter! 😊

pennyannie profile image
pennyannie in reply toSpaniel123

Hey there,

Depending on your diagnosis, there will be treatment options available.

First and foremost you need copies of all your blood test results. Ask your doctor as you are on Carbmazole is it because you have a confirmed diagnosis of Graves Disease and a positive blood test for either the TSI and or TRab antibody. If this is the case you should be being referred to an endocrinologist at the hospital. This, as I understand things is normal procedure and you are not asking anything out of the ordinary.

Spaniel123 profile image
Spaniel123 in reply topennyannie

Thanks Penny - I shall be ringing gp this morning!! x

DonnaT86 profile image
DonnaT86

With the thyroid unfortunately it won't go away without being medicated, I was on medication for 2 years and it just didnt help unfortunately so in the end had to have my thyroid out.

If you don't get medicated you could end up with alot of serious problems, hyperthyroidism can affect your heart, bones, anxiety is a big thing too I suffered alot with anxiety with graves disease and I did have a twitch in my eye for some time, if thyroid is left untreated it could potentially lead to a thyroid storm.

I never realised how much the thyroid plays a role in your body until I got graves disease and did some research, it would be really good for you to have a little read up about the thyroid, it will tell you the symptoms of a over active thyroid, treatment involved etc so will give yoy abit of an idea.

If you need to know anything please ask away I'm always happy to help.

Spaniel123 profile image
Spaniel123 in reply toDonnaT86

Thanks Donna much appreciated. x

Spaniel123 profile image
Spaniel123 in reply toDonnaT86

Thanks Donna, I have looked into the symptoms of an overactive thyroid and they certainly mirror those that I’ve been experiencing. I will also look into the treatment options and what I should expect. Thanks again for your advice x

DonnaT86 profile image
DonnaT86 in reply toSpaniel123

Once they have done the necessary tests to find out what's causing your overactive thyroid then hopefully once your on the right dosage of medication after about a month ul start to feel abit better you normally stay on the medication for quite some time so keeping my fingers crossed for you u get this sorted quickly and feel better in yourself.

I'm always on here if you need any advise or just someone to talk to as I've been there I know what your going through x

cabisore profile image
cabisore

You are not a fraud. Your body is running very fast and your vital vitamins and minerals are being depleted, so you feel the way you do. Get your results printed out because you need know at what level you are starting to measure progress is in the right direction. Although your symptoms should be the real measuring stick as to whether your are heading in the right direction. 10 mg seems too low as a starter as most people I know start anywhere from 20 to 40mg. You need to get Vit D, B12 and iron tested. Also I did change jobs twice demoting myself because of not coping, before I finally got a diagnosis and treatment. If only I could have got the diagnosis/treatment I would not have lost those jobs.

Spaniel123 profile image
Spaniel123 in reply tocabisore

That’s great, thanks. I’ve contacted my gp this morning to get a copy of my blood test results so I can take it from there.

That’s so sad about your employment, however I can see why you would take different, less responsible jobs because of these symptoms. Such a shame for you x

Nanaedake profile image
Nanaedake

I agree that a correct diagnosis and biochemical results to evidence it is of utmost importance for managing your work situation. How can you sensibly make employment decisions, or discuss with your manager or HR dept. if you don't know with certainty what disease you have, what the likely course of the illness is, or the likely outcome.

If you explain that to your GP it might help you get some clarity.

Is it possible that an earlier diagnosis was missed and you were given antidepressants instead? Untreated thyroid disease can cause symptoms of anxiety or depression.

Spaniel123 profile image
Spaniel123 in reply toNanaedake

That’s a really good point, maybe you’re right. I have had blood tests in the past couple of years where, for example, vitamin d deficiency was flagged up. I guess at this stage it’s impossible for me to know whether the gp checked for thyroid at that time - I would have to ask him? Would you know whether thyroid is ordinarily checked in a blood test?

Everyone is being so helpful, thank you x

Nanaedake profile image
Nanaedake

The best way to find out what has been tested is get a print out of your historical blood tests with the lab ranges from reception or ask if you can register online for the results. You are legally entitled by the way.

If reception quibbles about it, just say the new data legislation requires them to provide it. No argument.

If vitamin D was deficient, did they check calcium levels? Were you prescribed vitamin D3 supplements?

If your last vit D test was over 6 months ago then ask GP to recheck levels for vit D and at the same time do B12, folate and ferritin.

Most essential for bone health is good vitamin D levels. The vitamin D Council recommends levels in mid lab range which is well above the bottom of the NHS range.

Especially if you have Graves disease, bone health is imperative, another good reason to get a definitive diagnosis.

If bone density is low then you need to do the correct exercise. Presumably if you are on HRT you are menopausal and HRT will help to maintain bone density but the correct weight bearing and resistance exercise is still important. I know you can't exercise when unwell but this is another reason to ask GP to help you sort out your physical symptoms. Gentle exercise will also help psychological wellbeing.

Spaniel123 profile image
Spaniel123 in reply toNanaedake

Good point on the other blood results. I’ll get back to them on that. I doubt they have an online capacity to view them but it’s worth a try. Thanks again!

purple64 profile image
purple64

You are certainly not a fraud. Ask for a copy of blood results. Did he mention referring you to an endocrinologist ? Also 10mg is a very low dose to start on. Graves is an overwhelming and exhausting autoimmune disease and it takes time to learn to listen to your body and how to cope with it. Your GP doesn't seem to understand, which is common, they thin k pop a pill take some bloods and all will be well !! Take care and keep us posted there is a wealth of information and knowledge on this sight x

Spaniel123 profile image
Spaniel123

Thanks purple64! I have asked for my test results, but he hasn’t mentioned referring me to an endocrinologist. So I think that might be next on my list!

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