New Member, Graves Disease concerns : Hi, I am... - Thyroid UK

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New Member, Graves Disease concerns

g0courtney
g0courtney

Hi,

I am 21 years old and was diagnosed with an overactive thyroid and Graves Disease in mid 2016 and have been on different doses (currently 5mg daily) of Carbimazole since. I originally went to my GP for what i thought were worsening IBS-D symptoms and weight gain but he noticed I had a temperature and something wrong with my throat and after a blood test, realised my thyroid levels were insane. I was diagnosed with autoimmune thyrotoxicosis.

I had most of the classic symptoms like heart palpitations and hot sweats but also atypical ones - weight gain (with no increase in appetite) and lethargy. None of the doctors I have seen within the Endocrine department ever took this concern of weight gain seriously and since being on Carbimazole i have gained around 10kgs - in spite of dieting, regular gym, etc. After some reading online I found other people experienced this when on this medication and have found little to suggest they lose weight while being medicated (which doesn't give me much hope of losing significant weight).

My main concern is that I was gaining weight significantly BEFORE diagnosis and for someone who was overactive in every other way, the fact that I didn't drop any weight makes me think that something atypical was happening. Was something not being converted properly? Was I overproducing one hormone but not another?Doctors insist on treating this in a standardised fashion - medication for 1 year, regular check ups and they soon want me to think about radioactive iodine treatment - however I don't believe what I'm experiencing is standard. I have no intention of doing the radioactive iodine or removal as I do not want to do anything I cannot reverse at such a young age.

I still suffer with heart palpitations and breathlessness at times (and ongoing weight gain), but this is not taken seriously by doctors because I am otherwise 'biochemically' normal. Below I will list some blood test results, if anyone could explain the TSH levels, which often seem to be outside their 'normal' range I'd appreciate it.

Blood results from first referral to Endocrine:

Weight 81.9kg, T4 32, TSH 0.01 (Normal Range 0.3-4.5)

Blood results - June 2017 (5mg Carbimazole daily)

T4 15, TSH 5

Last blood test in April 2018 (5mg Carbimazole daily)

Weight 89.9kgs, T4 16, T3 5, TSH 0.01

17 Replies
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shaws
shawsAdministrator

I am sorry you are so unwell. I am hypo so cannot help but others who have Graves will respond.

Do you have your results for the Anti-bodies ? We have read of one or two members being diagnosed HYPER when they had Hashimotos and were Hypo. Who diagnosed you and who is monitoring you ? - as I believe it has to be an Endocrinologist. You can swing from being Hyper to being Hypo with Hashimotos ...

g0courtney
g0courtney
in reply to Marz

Hi thanks for the response so quickly. I've asked before at check ups if I might be swinging from hyper to hypo but theu always dismiss this

Marz
Marz
in reply to g0courtney

Who is diagnosing and treating you ?

SlowDragon
SlowDragonAdministrator

I would agree with Marz sounds yet again, more like Hashimoto's than Graves' disease

Can you add ranges on these results. FT4 and FT3 do not look above range

Unbelievable how many are misdiagnosed. Early stage Hashimoto's can give low TSH and high FT4

Have you had TSI or TRab antibodies tested to definitively confirm its Graves' disease

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, don't take in the 24 hours prior to test, and if on T3 don't take in 12 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

With both Graves' disease and Hashimoto's going strictly gluten free diet can often help,

Ideally ask GP for coeliac blood test first

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

Hi thanks for the response. I'm looking into having a Blue Horizon test done soon so i have results to take to my next hospital check-up. I was told early on I have a Vit D deficiency but they never mentioned much more but I now take that and B12 vits daily

Marz
Marz
in reply to g0courtney

How much VitD are you taking ? You should be dosing according to your result. Which B12 & how much ? ALWAYS obtain copies of all your results so you can monitor your own health and see what has been missed 😊

I've just posted another question with blood results attached

SlowDragon
SlowDragonAdministrator

It's currently not possible to test TSI or TRab antibodies privately, so you need to establish if this has been done by GP or endo. If not been done, politely but firmly insist that test is done. Ideally with TPO and TG antibodies as well.....though these can be done privately via Medichecks or Blue Horizon

I appreciate the reply, if my doctors have tested my antibodies it was not something that was shared/spoken about with me. I'm not really sure about the terms you mentioned, are these commonly checked with blood tests?

Marz
Marz
in reply to g0courtney

The first two anti-bodies metioned above are tested to confirm Graves or overactive thyroid. The TPO and Tg anti-bodies are tested to confirm Hashimotos in most cases.

These must be tested asap 😊

g0courtney
g0courtney
in reply to Marz

Thank you for all the info! I feel a bit more prepared for my hospital appointment

SlowDragon
SlowDragonAdministrator
in reply to g0courtney

Private testing is now available for Graves' disease if you don't get tested at hospital

But you should politely insist on antibodies testing if not been done

Private testing for suspected Graves - called TSI or TRab antibodies

medichecks.com/thyroid-func...

Antibodies for Hashimoto's (and sometimes Graves)

TPO and TG thyroid antibodies

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

Although fairly rapid weightloss is more usual prior to diagnosis of Graves, some people do put on weight at this stage, and a lot more of us have put on weight (perhaps just regaining what we lost) while under treatment. I don't think it's clear that Carbimazole is entirely/at all to blame - being hyperthyroid, and then being treated for it has quite a hefty impact on the metabolism and other areas of the body.

It's difficult to be sure without the ranges, but as others have said, your FT3 and FT4 do look to be within range, although TSH is still suppressed. It can take a while for TSH to return to normal after antithyroid treatment, but yours had definitely started working again last June, as it was 5, which if anything is on the high side (although the Carbimazole will have suppressed thyroid activity). Are these the only tests you've had done (I would have expected maybe one every 8 weeks on average), and have you been on the same dose of Carbimazole throughout ? (It seems quite low given your starting level of FT4).

As others have said, it would be interesting to see your antibody levels now (TPO, and either TRab or TSI), and also, if they did them, from when you were first diagnosed. With FT3 and FT4 in range and TSH low, I wonder if your thyroid levels have shot up at some point since the previous test, and either recovered of their own accord, or been brought back into line by the Carbimazole. This might explain your periods of palpitations/breathlessness. There are others here who are taking Carbimazole long-term (as opposed to RAI or surgery), perhaps they have experience of this ?

I think most of us will sympathise with your view that RAI/TT are 'one-way streets', although some people do find that they are a better option than living with an unstable thyroid. As I mentioned, there are people here who are managing to stay on low dose antithyroids in the long term.

Hi, I had similar problems, in the beginning, Your heart this is real and definitely a problem, You need a heart medication that will regulate your heartbeat, you need to go and see a specialist an endocrinologist. I took this for about 6 months, I saw my specialist every 6 weeks in the beginning. I live in Australia- not sure what medical access you have where you are. I can probably find the name of the heart medication if you want to know. Once your thyroid regulates you will definitely put on weight, even with training. I suggest you look into Ketosis diet, in 4 weeks I have lost 5 kgs. The only way to have any weight loss is to change your diet. It's frustrating and I also have hyperactive - graves disease and an enlarged multinodular goitre (thyroid gland, this is in my neck can see it and feel it). I'm thinking its reducing in size now with being on the med neo mercazole for 1 year now, only one tablet a day. This is serious and can lead to heart attacks go find an endocrinologist asap. In the beginning, I got swollen ankles because the heart was pumping so fast and could not clear the fluids.

I have almost exactly the same issues as you - weight gain being the main issue - I have gained 2 stone in 2 months starting just after I was re diagnosed. This is the second time I have had Grave's and I realised I must have started a relapse because I became breathless and started to gain weight for no reason. I am currently on 30 mg of Carbimazole just increased from 20mg and my weight having stabilised has started to go up again with the increase in carbimazole. I have discussed this with my consultant who suggested I would have an increased appetite because of my Grave's so I started to use the 'Myfitnesspal' app to record exactly what I ate - about 1800 cals/day (I wasn't trying to lose weight). I eat a healthy diet and take regular exercise, but my weight is still climbing - now heavier than I was at full term with my first baby! Trying to diet has made no difference at all. As you say Drs aren't bothered about it at all - yet cannot offer an explanation. Last time I started to lose weight without trying once they started to decrease my Carbimazole and my thyroid function was back to normal. Once I was in remission my weight returned to normal without me dieting, so don't worry too much! I was in remission for nearly 2 years, but sadly have to start all over again!

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