Just been told I have hyperthyroidism - Thyroid UK

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Just been told I have hyperthyroidism

Jenny309 profile image
34 Replies

Hi just been told I have hyperthyroidism been unwell for a while now also been told that the medication will make me gain weight sorry to sound superficial but I’m really concerned as my sister gained 30lb and now is suffering depression does this happen to everyone who takes the medication any advice will be so grateful don’t want to take it at the moment .

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Jenny309 profile image
Jenny309
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34 Replies
SeasideSusie profile image
SeasideSusieRemembering

Jenny309

How was your hyperthyroidism diagnosed?

Do you have any blood test results that you can post with their reference ranges?

Did you have thyroid antibodies tested?

If so, were they TSI and/or TRAb antibodies or TPO/Tg antibodies.

What medication have you been prescribed?

Jenny309 profile image
Jenny309 in reply to SeasideSusie

Yes myTSH was 0.01 and free T4 was 72.5 I don’t understand what that all mean but that’s the results .

SeasideSusie profile image
SeasideSusieRemembering in reply to Jenny309

What about the other questions?

What have you been prescribed?

Did you have antibodies tested? That's the defining test for hyperthyroidism (Graves disease). Many doctors get this wrong.

PurpleNails profile image
PurpleNailsAdministrator

Firstly have you had the cause of your hyperthyroidism determined? (usually done by a specialist). Often when medics see below range TSH (thyroid stimulating hormone) they treat with an anti thyroid such as carbimazole. Sometimes the hyperthyroidism can be transient if you have autoimmune thyroiditis (aka hashimotos) and this shouldn’t be treated with an anti thyroid as is ultimately results in hypothyroidism.

Graves causes continuous hyper and is confirmed by positive Thyroid-Stimulating Immunoglobulin (TSI) and TSH receptor antibodies (TRAb).

Thyroid Peroxidase (TPO) and Thyroglobulin (Tg) are positive in BOTH autoimmune thyroiditis and Graves

Carbimazole lowers the production of new thyroid hormones free T4 and Free T3 and raises the TSH (often it lags) . Ensure you are retested around 6 weeks later to see how your levels are. Dose adjustment should be by FT4 & FT3 as TSH unreliable.

As weight loss is common when hyper regaining it once on carbimazole and your levels become stable is also very common. We are advised to be careful as we have become accustomed to a larger apatite. At this time you won’t have have much control over metabolism and appetite so focus on adding nutritious foods.

Next step is to obtain your blood test results (with ranges) to see what has and hasn’t been tested.

You can share your TSH, FT4 & FT3 results for further advice.

It’s also important to test folate, B12, ferritin and vitamin D . These need to be optimal for thyroid health and are often overlooked.

Generally carbimazole treatment is given for around 18 months if you have Graves can go into remission. However it it becoming more common to hear patients are being offered definitive treatments early on.

NHS first option is Radioactive iodine treatment (RAI) which ablates the thyroid, but if you have contact with young children or have active eye disease, this wouldn’t be suitable & a total thyroidectomy (TT) will be an option.

Some choose to remain on carbimazole at a lower dose long term. I am hyper from another non autoimmune cause but have have been taking it 2 years.

Reading and research can be rather overwhelming at first but it you do a little at a time, and take notes to re read your understanding will develop and you can make an informed choice on your own treatment. Don’t be rushed by doctors.

You might find it helpful to keep a diary of your symptoms, medications and any supplements you take. Make notes of things you plan to discuss with your doctor and get into habit of obtaining test results and learning how to understand them.

Jenny309 profile image
Jenny309 in reply to PurpleNails

Brilliant thank you .

Jenny309 profile image
Jenny309

I was sent the results from the hospital they ask me to contact the doctor as soon as possible I’m waiting for him to get back to me to discuss treatment but was told I’d be on anti thyroid meds .

Marz profile image
Marz in reply to Jenny309

If you have the results can you post the anti-body results ? Which ones were tested ?

Lora7again profile image
Lora7again

I actually lost loads of weight and it wasn't until my levels were normal that I regained my original weight.

Jenny309 profile image
Jenny309 in reply to Lora7again

I haven’t lost a lot I just don’t put on weight anymore my sister put on 30 lbs due to medication I’m scared that’s going to happen to me I’m only 5ft at the moment 8stone 10 do not want to get obese I want to feel well again but I wanted to know if anybody had been treated with out the weight gain .

Lora7again profile image
Lora7again in reply to Jenny309

I have never gained weight just lost it. I went down to a size 8 when I used to be a 10. I wear a 10 now and I am 5'5"

Jenny309 profile image
Jenny309 in reply to Lora7again

So you didn’t really gain much weight on the medication that’s brilliant I’m just concerned as most reports suggest weight gain as the normal so it’s good to know that’s not always the case thank you .

Lora7again profile image
Lora7again in reply to Jenny309

Some people do but I was lucky and I didn't. I also lost 50% of my hair and some of my nails dropped off. I was an extreme case because I had been left untreated for over 2 years because my GP thought it was the menopause. You can read my story on my profile page if you are interested.

Jenny309 profile image
Jenny309 in reply to Lora7again

Yes I will I’ve been losing my hair got a bold patch and my hair is so thin I could cry thank you for responding I’m so grateful .

bantam12 profile image
bantam12 in reply to Jenny309

I never gained weight and I was hyper for many years, I'm now hypo and still underweight no matter how many cakes I eat !

Jenny309 profile image
Jenny309 in reply to bantam12

Thank you for letting me know much appreciated .

pennyannie profile image
pennyannie in reply to Jenny309

Hello Jenny and welcome to the forum :

If you need to be on anti thyroid medication you need to be on anti thyroid medication :

If with Graves Disease it can be considered life threatening for some people and when you know more, you can tell us, and we can explain what is going on in simple terms that you will understand.

Your weight may go up - it may go down - as when on an AT drugs your metabolism is very much out of your control and in the hands of the endocrinologist managing your levels of thyroid hormone.

You will adjust and you will stabilise and any weight gained will be lost when optimally medicated.

Is your sister also dealing with a thyroid health condition as there is said to be some genetic predisposition and it might have a bearing on your situation.

Jenny309 profile image
Jenny309 in reply to pennyannie

Thank you I’m so glad I’m on here much appreciate your advice .

pennyannie profile image
pennyannie in reply to Jenny309

If you go on the Thyroid uk website you can read around the symptoms of both hyperthyroid and hypothyroid and Thyroid uk is the charity who support this amazing forum, you might even want to think about becoming a member.

If your diagnosis is Graves Disease you might also like to dip into the Elaine Moore Graves Disease Foundation website ;

Initially though we need to know which antibodies have proved positive and over range, the medical evidence, and what you have been diagnosed with.

Jenny309 profile image
Jenny309 in reply to pennyannie

Thank you so much x

pennyannie profile image
pennyannie in reply to Jenny309

Just picked up your reply to someone else : your body is exhausted, you need to rest and start eating a full balanced diet full of good fats, protein, and eat as clean and as fresh as you can.

My initial symptoms were insomnia, exhaustion and dry gritty eyes - and the AT medication sorted my symptoms within a week.

On the AT medication I did experience eating for England and loosing weight, and I also experienced extreme tiredness and muscle aches with some brain / body disconnect in that my mind was telling me to keep running rather than resting.

I read people can experience tremors and heart palpitations and that a beta blocker can be prescribe if these are also your symptoms.

Everybody's thyroid journey is unique to them, so just rest up, it's easy to become overwhelmed with everything but given a little time it will all fall into place just like pieces of a jigsaw.

Jenny309 profile image
Jenny309 in reply to pennyannie

My first symptoms were the same to begin with I eat very healthy but I will wait and hopefully I can get this sorted thank you .

tattybogle profile image
tattybogle

Hi Jenny ,just so you know , it isn't the antithyroid medication itself that makes people put weight on.It is the fact that becoming HypOthyroid causes some people (but not all) to put weight on.

Antithyroid medication can cause you to become a bit hypothyroid depending on if the dose you take (to stop your current overproduction of hormone) becomes a bit too much for your needs, but this is why you have blood tests while taking it, to keep things in balance hopefully.

I wasn't hyperthyroid , i was only ever hypothyroid, but i never put hardly any weight on, even though i had all the other physical signs of hypo. I've been diagnosed and taking synthetic thyroid hormone for over 20 years and i'm still technically slightly underweight .

So don't be scared to take the Antithyroid medicine that you need to get your hormone levels back down. Ending up overweight is not something that happens to everyone. I agree with PurpleNails, pay attention to eating nutritious food, and take into account that you may have got used to having a larger appetite without putting weight on while you have been hyperthyroid, so it might need adjusting a bit as you go along.

Jenny309 profile image
Jenny309 in reply to tattybogle

I’m so grateful to you and everyone on here I was closed to tears when I was told about the medication I’ve spent years working out eating healthy I workout 6 days a week but I’m finding so hard as I’m exhausted and I have to make myself do it I don’t want to feel so unwell anymore but this was found out by accident I had thyroid test done by my doctor because I was so exhausted he said it was fine but I had arthritis in my hands and had see a specialist at the hospital it was her that said I want blood test done and she called me at home and told me I had hyperthyroidism and she has sent a letter to my doctor thank you so much .

tattybogle profile image
tattybogle in reply to Jenny309

Try and think of it this way... you have eaten well and kept yourself fit , so your body is basically very healthy , but because your thyroid hormones have gone wonky , now you feel exhausted , (and probably an emotional mess too which is the hormones, not you) and sorting this hormone imbalance out is now the priority. Don't worry that taking things easier and being more gentle with yourself until your hormones are back under control will ruin all your hard work , but instead trust that all your previous hard work and good nutrition will mean you have a head start on managing to recover well, when you start to feel better.

You can trust what pennyannie say's... you're exhausted ..... Rest , try not to worry about how this will all work out. It's good that it was noticed by the sharp eyed specialist, well done that woman . And it's good that you've found your way straight to this really good forum.... you must be smarter than me ... it took me 17 years to find it . lol

Jenny309 profile image
Jenny309 in reply to tattybogle

Bless you thank you so much I will try and take it a bit easier thank you so much .

Angel20 profile image
Angel20

The higher the dosage of the medication they have given you, eg carbimazole the more weight you will put on, be careful as you may become HYPO as opposed to HYPER

Jenny309 profile image
Jenny309 in reply to Angel20

Thank you 🙏

Meanbeannyc profile image
Meanbeannyc

I did not gain weight on carb. I lost because I wasn’t exercise intolerant anymore. My heart rate went back to normal and I was able to breathe again.

Jenny309 profile image
Jenny309 in reply to Meanbeannyc

Thank you for your input much appreciated

Qwerty12345 profile image
Qwerty12345

Try not to worry. I was overactive (due to Graves) and prior to diagnosis I had lost maybe a half stone despite eating constantly! Like you, I worried about putting on loads of weight with treatment and also felt a little vain! But it was all fine. I only regained the weight I had lost, perhaps an extra pound or two as I went briefly underactive, but settled quickly back to the weight I’d always been as the dose was tweaked. Good luck.

Jenny309 profile image
Jenny309 in reply to Qwerty12345

Thank you so much x

PENNYODELL29 profile image
PENNYODELL29

Meds should help u stabilize they don't make u put on weight

NIKEGIRL profile image
NIKEGIRL

I found the carbimazole did not make me gain weight but rather my appetite grew smaller.

Jenny309 profile image
Jenny309

Thank you .

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