Idiots guide

[Denise29w]

I've been reading everyone's posts and responses and realise I have absolutely no idea about anything to do with my condition. When people are talking about free t 3, t4 and converting etc it's like a foreign language. Is there anywhere that explains all this in very simple terms. I didn't even know how important the thyroid is or all the other organs it's related to until after I had it removed by R A I and then I'm till finding it a mystery. All I know is I constantly feel awful and having read your responses can see I'm not alone in my symptoms. When I told a Dr recently how dreadful I feel and that I felt my body was giving up on me, her response was "there are 1000 s of people like that!!!" And then sent me on my way. I feel like I need to start my journey from the beginning as nothing was ever explained to me except my levels were dangerously high and I didn't have a choice but to have it removed or r a i. I have been discharged from the hospital and only now see a gp (whoever's available!) So don't feel anyone really knows too much about my situation and only dish out levo after a basic blood test each time.

[Sisternina]

I was relieved and worried to read your post. I am so sorry no one has been careful enough to explain. I too am still mystified by this condition even though have had it for 28 years,hashimoto's. This blog is extremely helpful and I'm sure you'll find guidance here, many GP 's dont have time or resources to help.

[greygoose in reply to Sisternina]

Most GPs don't know anything about it, either.

[Treepie]

What could be more appropiate than " Thyroid for Dummies" but the UK edition .I found a copy in the library ,but you might get an copy on line .

I also suggest that you explore the ThyroidUK web site and even join the charity.

[Marz]

thyroiduk.org

The above link takes you to the main website of this forum and where you can read and .... read everything Thyroid. We have to stay ahead by continually learning, as new things crop up all the time. If you find reading information difficult to absorb - then there are loads of videos on YouTube about the Thyroid.

Always obtain copies of your test results with ranges - you can ask the surgery for them and go back to a time before your RAI. You are legally entitled to have copies so you can monitor your OWN health and check what has been missed ! Some surgeries now have on-line access - so worth checking. When you have done your reading/watching then do return if you have more questions. Having your results with ranges makes it easier for posting here and enables members to support - without them we would only be guessing !

[waveylines]

Am sorry to hear how you feel & whats happened. GPs know very little about thyroid to be honest....lol. Youre best bet is to do some reading. Dr Peatfields book called Living with your Thyroid is a good one. Knowledge is power so definately worth reading up.

As youve had your thyroid destroyed/ removed with treatment you should be on a full replacement dose of thyroid hormones. The standard treatment is Levothyroxine. Levothyroxine is T4. T4 is the storage form of a thyroid hormones. Your body converts it to T3 when it needs to use it. Bit like sugar & glucose..... However some people's body's have more trouble converting T4 to the usuable T3 and thats when life gets more complicated! This is where other forms of thyroid hormone gets added in to try to help the body. Hope that makes sense?

Not always but some people on a full replacemetn dose of Levothyroxine really do struggle to convert. Unfortunately the standard blood tests for thyroid treatment do not check how well you convert. To some degree it is also about how you feel too. GPs should be cjecking this but the vast majority dont. The easiest thing is to dismiss you as has been your experience.

The first thing to do is to make sure you are on the optimum dose of levothyroxine. Many people are under prescribed and this leads to feelings of fatigue etc.... To do this you need to get a copy of your blood test and hopefully it will included a Ft4 (storage thyroid hormone) and TSH (hormone that signals to the thyroid whether it needs more or less thyroid hormone making). You need to look at your ft4 level and the range (numbers in brackets to the side of your result). The ft4 level should be in the top third, or near the top of the range. If its lower than this you will feel poorly. The TSH needs to be low -less than 1. If your ft4 is low your meds need raising. This should be done in small stages, leaving a 6-8 week gap between raises as your body takes ages to adjust.

Hope this helps a bit.

[MaisieGray in reply to waveylines]

Just to clarify, and help the OP track it down, Dr Peatfield's book is titled "Your Thyroid and How to Keep it Healthy", and written under his full name Dr. Barry Durrant-Peatfield.

[FancyPants54 in reply to MaisieGray]

And it's really easy to read and taught me a lot.

[pennyannie]

Hello Denise

How brave of you to openly acknowledge it's all relevant, but like gobblegook to you.

I was where you are, and this is the first of many steps you will make - it is a massive learning curve for all of us, I too was going in an ever decreasing circle of wellness.

I found this site, and just reading other peoples post started me on my own road to better health.

I think from what you say, you were diagnosed with Graves Disease and had your thyroid ablated with Radio Active Iodine. I too had this treatment for my Graves and the journey has been a lonely one, as I've had very little help or understanding in Primary care.

My only recognised symptom was low ferritin, and that was where I started my research.

In order for anyone to give you detailed advice it is essential that you get the correct blood tests undertaken, either by your surgery or privately if your doctor refuses to do them.

It is a full thyroid panel plus the vitamins and minerals as detailed on this website.There are also details of the private companies who can take your bloods if needed.

Once with these results, people repost the results and then other people better qualified than myself advise the next steps for you to take.

I had no help from my doctor, had my bloods done privately and then started to supplement various vitamins and minerals where it was found I was deficient.

You might like to look up this website :- it was founded by a lady who has Graves Disease and drank the RAI - she is in the USA - there is an open forum - help readily available to anybody with the disease. I started by reading her book, her name is Elaine Moore and her book is called Graves Disease A Practical Guide. I think the book - in extract form - is available on her website.

The other book that helped me was written by a doctor who is hypothyroid - it is an easy read and talks so much common sense - Your Thyroid and How to Keep it Healthy by Dr. Barry Durrant Peatfield -

Just a passing thought, I'm presuming you are in the UK , and with Graves Disease ? Is it at all possible to change to a new doctor who may just be a breath of fresh air, and wanting to help you ?

Welcome to the forum - no one is an idiot - and it is not your fault that you are not well and can't access the treatment and care you, like all of us, deserve and should be entitled to.

[SlowDragon Administrator]

Presumably you had Graves' disease before RAI

You might find Elaine Moores website good

elaine-moore.com

Plus these

chriskresser.com/the-gluten...

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

[Denise29w]

Thank you all for your responses. It's definitely a minefield isn't it. I just feel my head's going round and round in circles but hopefully with all your help I'Ill be a bit clearer

[Beverleyb]

I was in a similar position to you 25 years ago, I now realise I had hypothyroid symptoms for 10 years without treatment, I must have spent more time at the GP's than at home trying to find out what was wrong....to cut a long story short , I had my thyroid removed after 10 years of he'll and was put on thyroxine...I was still having the same symptoms for seven years, I knew nothing about the bloods tests levels , I just kept taking what the doctor prescribed....I eventually got so weak trying to walk up the stairs that I knew then something wasn't right , I felt like an old lady..I found this site and everyone was so helpful, it takes time to understand everything but you will get there..good luck .x

[Denise29w in reply to Beverleyb]

Thank you so much. I seem to have good days and then extremely bad days - today is a bad day. It's almost like you need to be able to test on a daily basis like a diabetic and then be able to adjust your meds accordingly

[Beverleyb in reply to Denise29w]

As members have suggested post your latest results on here, that will give an idea if you are on the right dose/medication, read and research, keep a note of all your blood tests then you will start to understand a bit better...I ended up seeing a private endocrinologist....I find if I do too much one day , the following day is a bad day...

[Denise29w in reply to Beverleyb]

That's exactly what happens with me. It's so good to hear I'm not alone in this but obviously we shouldn't have to go through it daily