Spent All morning reading this site now Ive found it.

[Nettychetty]

Wow, phew, cripes, oh and Hello fellow suffers. Don't know if I will be back on here tomorrow or next week...in the habit of either forgetting things or shutting things and people out.

Presenting me in 2007,

size 18, 12 stone , 46yr old, manager of small holiday park, large dog as pet, fit, did a lot of walking, gardening, running shop and bar, 2 teens at home

2007 after months of OK thyroid tests when I felt so ill and had loads of symptoms, and a customer told me I had "gone grey and lost my sparkle" the GP sent me to hosp for test where they decided I was premenopausal and gave me oestrogen supplements. didn't get much better.

2011 got asymetric Graves Disease. Tests showed I was Overactive Thyroid despite showing symptons of underactive.

High doses Carbimazole reducing over time to a level..after 6 months of staying level the doc would reduce the dose further slowly I would become ill again and the Carbimazole would have to be increased, and so we go on for a number of years...operation not an option as I can only be considered for Life threatening Surgery. Radio five treatment not considered by my Endo as not always good with Graves and also I have vision probs since a stroke. So he says so long as we monitor kidney, liver funct regular then can stay on Carbimazole. Ok.

Swollen, sore flaky legs, weight gain, lack concentration, sleepy, stupid dreams, etc etc

Endo retires, now got new younger Endo...have to go through everything again...symptons no better... till I just totally lose it crying and shouting about sick of being I'll and not getting better no one listens to me. Now taking levothyroxine and carbimazole to see if we can find a balance, feel happier in myself, calmer, not perfect but definitely better than I have felt for years.

2018

Size 24...22 stone, and still gaining despite smaller plates and more veggies. 57 yrs old stay at home person with fat lumpy legs, can't walk, can't garden, (have other probs non thyroid related that stop me from taking physical exercise) sleeps a lot.

I think it looks like finding a level where we feel well enough to function is the main goal for anyone with this problem.

I sincerely hope that eveyonehas some laughter in their day or something to make them smile...I hope I can get through my fuzzy head and remember you are here as it will be nice to visit again. Xxxx

[Judithdalston]

Yes, can sympathise with that! Have you any recent ( and historic) thyroid blood tests with TSH, FT4, FT3, autoimmune antibodies? Have you had Vit D, B12, folate, ferritin checked with blood tests, and results well above lower 'normal' range? If so post them here for advice...

[Nettychetty in reply to Judithdalston]

Hey there, nice to meet you Judith. Somewhere I have copy of last year's blood tests where they said everything ok. I will have to hunt it out. If I don't become distracted by finding something else and forget what I was looking for. Lol.

Had tests a few years ago for very sore muscles everywhere, couldn't sit on a hard chair or wear a bra. GP put me on Fultium D 800IU one a day. Muscle pain reduced...now just tender to a firm touch.

[Judithdalston in reply to Nettychetty]

I stress what is 'normal' ie within range for Gp/endo, is not optimal for thyroid sufferers whether it's Thyroid blood test results or vitamins/ minerals. Probably well worth getting your own private blood tests, relatively expensive but quick results , and from one blood draw so a good benchmark. Medichecks often has 20% off on Thursdays on some tests.

[Marz]

Really sorry you have suffered so much - but so glad you have found us ! So do you have any results for your thyroid - with ranges - results you are legally entitled to have.

Have you been tested for Hashimotos - auto-immune thyroiditis - when the thyroid can swing from being HYPO to HYPER ?? Or did you have positive test results for Graves or Over-active thyroid ? We have read posts here where people have been wrongly diagnosed. With your weight gain I cannot help thinking you may have been HYPO for a long time ....

There are lots of questions and points I would like to make - but hey lets take it one thing at a time ...

[Nettychetty in reply to Marz]

Last year's full blood count with Tsh, t3,t4 all normal.

Taking vit d supp as prescribed by GP for very sore muscles.

2011 had been to optician as I had one frog like eyeball, they sent me to doc, and immed appointment with Endo.

Test showed Graves and overactive thyroid.

Taking levothyroxine 100 microgrms daily and 40 milligrams Carbimazole. As well as various meds because of a post op stroke that csused eye problems.So now I dont know what is caused by thyroid issues and what is caused by stroke meds. am due another blood test this next month.

[greygoose in reply to Nettychetty]

Sorry to insist on this point, because it is very, very important. But, did you actually have the Grave's antibodies tested? TRAB or TSI? It often happens that doctors jump to a lot of conclusions, where thyroid is concerned, and they don't really understand the complexities of blood test results, anyway. The only way tests would show Grave's is if the antibodies were tested. Not just a low TSH, not just high FT4/3. Antibodies.

[Marz in reply to greygoose]

Agree - so important - thanks for putting it more emphatically than I did in my reply below ...

[Marz in reply to Nettychetty]

Sorry but 'normal' is an opinion and NOT a result. We really need to see your results and ranges from the beginning. It does sound like Graves or it could be Hashimotos.

Strokes can be caused by raised HOMOCYSTEINE - which is often raised when B12 is LOW at a cellular level. B12 is often LOW with Thyroid issues.

Do you have test results for B12 - Folate - Ferritin. I see you are taking 800 IU's VitD - hardly enough to treat a flea - so important to know your VitD test result as dosage is linked to your result. For instance I take 5-10,000 IU's VitD - and I live in Crete with plenty of sunshine.

[SlowDragon Administrator]

Now you have found us, suggest you get full Thyroid evaluation. For this you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus 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.

If on Levothyroxine, don't take in the 24 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 TPO or TG antibodies are very high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease). Very often misdiagnosed as Graves' disease

Graves' disease diagnosed by high TRab or TSI antibodies. Ask GP for copies of these tests, they should have been done in past when first diagnosed. Extremely important to find out if this was ever tested

You can't (as far as I am aware) get a TRab or TSI tested privately

You can with Graves also have slightly raised TPO or TG antibodies, usually not as high as with. Hashimoto's

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's.

Food intolerances too, especially gluten relevant to both Graves and Hashimoto's.

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...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

[Nettychetty in reply to SlowDragon]

Thank you. I have had tests over the years for Trans and TSI because I have seen if written on the bloods envelope when they were taken.

[Nettychetty in reply to Nettychetty]

Sorry Trans.

[Nettychetty in reply to Nettychetty]

Flipping autodowhatitwants.....TRABS

[SlowDragon Administrator in reply to Nettychetty]

With both Graves and Hashimoto's gluten is often a hidden problem

[SlowDragon Administrator in reply to Nettychetty]

So what was TRAb or TSI results?

[Marz in reply to Nettychetty]

So you saw the test requests - did you see the results ?

[Supul]

Hi Nettychetty

Sorry to read of your continuing suffering ill health symptoms.

You have lots of great answers here. HU members really do care and share, so keep learning. Try and stay focused on getting better despite your lack of medic support thus far.

I was diagnosed myxodema 28 years ago. Managed well on levothyroxine for 25 years ago before having thyroiditis. Won't bore you with long history trying to get well. Suffice to say, I'm much better these days.

When medics failed me, I bought Dr Peatfield book, How to look after your thyroid. I also joined HU. I learned a lot!

I then made an appointment with Dr Peatfield, he gave me understanding, warmth, knowledge and a treatment plan. At last, I was able to begin the climb out of feeling very, very unwell.

I hope you get to check out Dr Peatfield work. His book is easy to read and helps with understanding and reassurance, that what you are going through, so many people have and will go through, until thyroid treatment is improved within the health service.

Good luck.

[Nettychetty in reply to Supul]

Thank you. I will look for this book.

[Spareribs in reply to Nettychetty]

"Your Thyroid and How to Keep it Healthy: The Great Thyroid Scandal and How to Survive it" - e.g. used £5.38 on Amazon

also you can earn a little for 'Thyroid UK' by using the associated link...

thyroiduk.org.uk/tuk/go_sho...

[humanbean]

operation not an option as I can only be considered for Life threatening Surgery

Can I be nosey and ask why?