Hyperthyroidism/Graves: Last year at this time it... - Thyroid UK

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Hyperthyroidism/Graves

ZRachel profile image
25 Replies

Last year at this time it felt as though I had the world at my feet, I had lost weight had endless energy and knew I looked good. Now a stone heavier severe depression and to boot agonising back pain in which an MRI scan revealed 4 partial compression fractures and a trapped nerve ... thyroidism related? No idea ... from what I've googled it seems osteoporosis is on the cards ... My eyes, although no longer bulging remain dry ( watery) despite using Xailin day and night viscotears and Selenium. But the weight problem upsets me most, even though my diet is so healthy I am merely going through the motions ... I no longer want to go out, but risk a walk on the beach late evening. Having always worked and been active this has hit me like a hammer blow. Basically I am happy to have an overactive thyroid but without the Graves ...

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ZRachel profile image
ZRachel
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SlowDragon profile image
SlowDragonAdministrator

What treatment are you currently taking?

Whose monitoring you?

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.

Essential to test thyroid antibodies, FT3 and FT4, plus vitamins

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

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. This gives highest TSH and most consistent results. (Patient to patient tip, GP will be unaware)

With Graves and Hashimoto's many find strictly gluten free diet helps

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

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

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

ZRachel profile image
ZRachel in reply to SlowDragon

This does not help.

Rmichelle profile image
Rmichelle in reply to ZRachel

Hi there I think slowdragon was trying to be helpful and making sure you have all the relevant tests and support, I understand what you are saying, illness hits us like a massive wrecking ball and I too was diagnosed with hyperthyroid last July and was a wreck with trembling, heart palps, breathlessness the whole shaybang! ! Then later graves disease and hashimotos, it's been very hard but determined to get my life back, I am still off work 8 month's later and taking titration doses of carbimazole 2.tags. I'm better than I was and have some very good days.

When we're you diagnosed and what are your test results of the thyroid panel as members can help you?

WWhen I was hyperactive I lost lots of weight but as took more carbimazole my weight came back on especially when I got more hypo, I think the key is accepting you have this disease as it is not going to be cured but you can ease some of the symptons, I do follow a gluten free diet as I am also celiac too but most people on this site will adopt a gluten free diet. 😊😊

ZRachel profile image
ZRachel in reply to Rmichelle

Thank-you! I didn't understand the previous reply, rather like one of the first doctor's ... he seemed to think I understood TSH FT3 and honestly I came out none the wiser! I don't do gluton free but am eating very healthily, too healthily tbh. I had the trembling palpitations but the joy of losing weight outweighed any concerns. It was only vanity how I found out I had Hyperthyroid/Graves in the first place! My eyes were constantly bloodshot and watery and nothing cleared it up! Then the bloodtests and news I had this illness. I am still in denial ... if I put on anymore weight I swear I will stop the Carbimazole altogether. I'm on 5mg a day. Thank you for replying.

Rmichelle profile image
Rmichelle in reply to ZRachel

No problem but you need to carry on with the carbi or you could be in danger of having a thyroid storm, gluten free does not mean healthy diet but most people will adopt it as it lessens auto immune flare ups(graves and hashis et) educate yourself on this rollercoaster disease as gps and endos do not know anything about it really-it has taken me since july last year to get where i am-nothing with the thyroid happens quickly. Good luck.😀

ZRachel profile image
ZRachel in reply to SlowDragon

5mg now, oringinally 40mg (daily) lowered to 20mg. Stopped taking 20mg for 16 days agreed to take 5mg 4 weeks ago. Consultant was happy with blood test results.

Rmichelle profile image
Rmichelle

Have you had a blood test recently it should be every 4-6 weeks.😊

ZRachel profile image
ZRachel in reply to Rmichelle

Yes.

Rmichelle profile image
Rmichelle in reply to ZRachel

What were your results its just helps to know the results so others can comment. 😊

ZRachel profile image
ZRachel in reply to Rmichelle

I've no idea! Should they have told me? Thanks

Rmichelle profile image
Rmichelle

Never leave your health in charge from a gp, always get copies of your blood results so you can monitor your health on where you felt best in ranges etc, gps do not give accurate info about reading thyroid results as they do not have great knowledge on it, you need to ask for copies and get bloods done every month, also you should really educate yourself on the disease, also you should get your ferritin and b12 and vit d and folate tested as these need to be optimol for the thyroid to work properly. I know it sounds alot to take in but it is all there to help you.😊

ZRachel profile image
ZRachel in reply to Rmichelle

It is, honestly I'm still in denial.

Rmichelle profile image
Rmichelle in reply to ZRachel

You will accept it in time as we all move on with time, your fight will return as you will want your old life back. Am i right??

ZRachel profile image
ZRachel in reply to Rmichelle

Of course. But cannot deal with this weight gain, desperately unhappy, will either stop carbimazole or not eat 3-4 days a week. Thanks.

Rmichelle profile image
Rmichelle in reply to ZRachel

I know you are unhappy but not eating you will be starving your body of vital vitamins and minerals-that is not the solution and stopping meds you could be putting yourself at risk, we just need to be patient and let our bodies heal, there is no need to be alone in this there are plenty of us on here.x 😊

Hafenfeld profile image
Hafenfeld in reply to ZRachel

Maybe lower your dose of carbimazole. Your weight should normalize as you lower the dose over time. You may not need as much as the Dr. is prescribing. Your body is telling you something. Those that mention GP’s and Endo’s only know what they know are right. You know your body. Every body is not the same. You probably need to take control of your own health. Educate yourself.

Hafenfeld profile image
Hafenfeld in reply to Hafenfeld

Also, Graves is an autoimmune response as is Hashinotos, RA, MS etc etc. Google autoimmune disease. You will be amazed! Removing gluten and dairy from your diet is imparitive to calming the auto immune response. We live in a world of GMO’s (Genetically Modified Organism) in our food supply. Be cognizant of those pre-prepared and packaged foods that you may be eating. Move to a “fresh” diet. Fresh meats and fresh veggies, nuts and seeds. Google non GMO foods. Microwaving food destroys the nutritive value of food. If you are microwaving food you are only consuming what makes you full. Not what makes your body “run”. Cook over the stove or in the oven.

Lisa254 profile image
Lisa254

Hi zrachel,

Being diagnosed with hyperthyroidism is so dainty I remember the phone call from my doctor a year ago now... yes you have an over active thyroid...what the hell is a THYROID 😳.... he said I need to go and pick up 20 mg of carbimazole and some propanol ....ok how long shall I take it for? A week or 2!! 😂😂😂 he surely had to swallow his laughter To my shock the dr replied a year to 18 months!!

Reading your post I can go back to my old posts and we have similar sentences ! Rmichelle, slow dragon have given you great advise and they are so knowledgable and supportive, there is so much to learn you will be a wize in no time!

I didn't have the skinny symptom 😔 But I did find I put on a stone or so in the first 4 months but talking to rmichelle and the others on here I went gluten, soya, dairy and sugar free ( I now have the odd dairy and sugar food) and a clean diet this did the trick I'm more or less back to my old weight . Though I must say my appetite hasn't been great any way but improved on lowering carbimazole (currently on 2.5mg).

You can call your doctors and ask for all your historic blood tests and then post on here so we can help 😊

I use thealoz duo for my dry eyes.... I'm also considering taking selenium as supplement when do you take it?

Hope this helps 😊

ZRachel profile image
ZRachel in reply to Lisa254

Wow actually had to lol ... me too ... asked the Doc how long for and he said 12-18 months ... Really??? I had to gasp ... I loved that the wight dropped off ... everyone was like OMG you look great ... and I did. So harsh then that I have to be "cured"?? Hell the only problem is my eyes ... the Graves. I bought the Selenium from Holland and Barrett and since taking my eye are much less bulging but still watery ( one could mistake it for an eye infection) a great improvement. Have never been offered results of blood tests but will ask in future. Soya is not for me ... yuck yuck just couldn't! Thanks.

Lisa254 profile image
Lisa254 in reply to ZRachel

Have you seen an ophthalmologist at the hospital? That's great selenium is helping.

Yes definitely call your doctors surgery ask for all your thyroid results from the last year or so with the ranges they use and make a list. It will help and you will be able to read them yourself and see your improvement😊

Rmichelle profile image
Rmichelle in reply to Lisa254

Ha lol what the hellis a thyroid!!😂😂 that was funny lisa.xx

Lisa254 profile image
Lisa254 in reply to Rmichelle

Hahha total clueless moment..... not so innocent now aye!! Xx

Rmichelle profile image
Rmichelle in reply to Lisa254

Professor now!!

SlowDragon profile image
SlowDragonAdministrator

I think we all find it shocking when first diagnosed with something more long lasting than a cold

Always get actual results and ranges on all blood tests

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can make nominal charge for printing but many will do so for free (£10 max and can not charge at all after May 25th 2018)

Link about thyroid blood tests

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

Link about antibodies

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

ZRachel profile image
ZRachel in reply to SlowDragon

Thank-you.

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