Hi, I'm a newbie 32 yr old female.I have an underactive thyroid (taking 300mg levothyroxine) & need a lot of help, guidance and advice pls?!

Please be patient because this is going to be very long winded due to my ignorance !!

I was first diagnosed in Jan 2007, I had, had a baby in the July before and my GP although very understanding tried to diagnose me with PND but I asked for a blood test and was granted one. The next day I had a phone call from the GP saying I needed to come to the surgery because I had in fact got an underactive thyroid and needed medication asap. I was told that my levels ( don't know which one was 88) that it was extremely high, was prescribed 100mg levothyroxine straight away and had blood tests every 3 months, I found out I was 3 months pregnant that March (son born Sept 2007).

My levothyroxine dose has just got higher and higher over the years and I've never seen a specialist or even had a decent conversation with my GP about my thyroid and thought (very naively) that it was a minor thing apart from having to take meds every day for life.

Anyway over the years I've suffered many illnesses and been admitted to hospital numerous times. I've never felt 'healthy' my whole life and just put it down to part and parcel of being a busy mum of four etc etc !

In the last 2 years alone I've had meningococcal meningitis, appendicitis, been diagnosed with arthritis of the spine and degenerative discs, been hospitalised at least x4 with kidney infections, suspected meningitis x2 (fortunately just a form of infection somewhere in my body) and had ear, throat, chest, water infections etc etc.

This year alone I've had treatment for abnormal cells on my cervix (sorry tmi) been in hospital with an infection in my uterus due to having the coil fitted and again last wk, was sent by GP's back to hospital via ambulance because of my symptoms which I've since been diagnosed with Swine flu. I'm still recovering now.

As you can imagine myself and my family have had enough and started to look into why I could be this poorly so often and I've now realised that maybe my thyroid could have something to do with it.

Every post I've come across you all seem so knowledgeable and I've literally not got a clue about anything other than probably needing to be referred to see an endocrinologist. I'm willing to go private if need be as I'm truly at my wits end. Anyway Im basically asking for any advice, tips or info that any of you have! Thank you for reading my long winded post and thanks in advance for any help x x

11 Replies

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  • Really sorry you had no replies - hopefully someone with relevant knowledge will pick this up from Latest Activity....

    For future reference, people tend to get a better response in the Questions section... :)

    L

    x

  • Louise I think you will find that this lady has also posted in the questions section and has had several replies - from myself included.

    Moggie x

  • My heart goes out to you - you're certainly in desperate need of an enlightened endocrinologist. I am only my own expert,but I've 40 years of endocrine issues plus the BA from the OU to help me understand them, but your levothyroxine dose sounds way high. It's obviously not resolving your symptoms,so I would suggest you at least try to find someone - endocrinologist or GP - who will give you a trial adding T3 and reducing the T4(Levothyroxine). If you follow this site you'll know that there are far too many "experts" who believe T3 is detrimental and won't prescribe it,despite there being no evidence to back this misconception. The history behind the idea is dreadful but well worth the read.

    I'm sure that someone with better advice will get back to you and hopefully you'll be guided to find a sympathetic medic. It doesn't sound as though your current medical help has any idea other than giving you a big dose of T4,despite the continuation of your symptoms. No one should be treated as you've been,and I do wish you the greatest success in rediscovering how it feels just to be ordinary. A big virtual hug is on its way,as I'm nearly old enough to be your mum!

  • I agree with mumcat2 that you need T3. Levothyroxine contains the T4 hormone which is not an active hormone - it needs to be converted by the body to T3 to become active. The body regulates this conversion and if taking large amounts of levothyroxine the control mechanism limits the conversion and the higher doses of levothyroxine is not effective. This can only be overcome by taking the T3 form of the hormone.

  • ww thank you, my post below will fill you in so far lol ! i do believe i@m in for the long haul !

  • aww thank you, my post below will fill you in so far lol ! i do believe i@m in for the long haul !

  • aww thank you, my post below will fill you in so far lol ! i do believe i@m in for the long haul !

  • What is vital is to know what the results ever since 2007 have been for

    TSH

    Free T4

    FreeT3

    Cholesterol

    Ferritin

    Folate

    plus hopefully

    Liver function tests

    Calcium

    Vit D3

    B12

    Magnesium

    Zinc

    Ask your GP to provide copies of all the above and together with your ongoing symptoms and dosage of levothyroxine then we should be able to help you

    The area you are in would be helpful if you want recomendations of Endos

  • I definitely have only ever been tested for TSH and T4 since 2007, i found out yday but GP is willing to test everything once I've disposes of the rotten flu lol ! Im in Leicestershire also, than you x

  • Thev rotten flu may simply be the auto immune attacks of Hashimotos

    they came every 3 weeks for my husband

  • Firstly, thank you so much for taking the time to reply and apologies for 'posting' in both questions and posts.

    I was hoping to visit the GP yday and get referred to the endocrinologist or go private and to get all my blood tests results to be able to post but unfortunately when I visited the GP - he was more concerned with the symptoms I was displaying there and then regarding the flu. He was of an opinion that I'd be wasting my time by seeing an endocrinologist but he was willing to talk about things and test me for everything i wanted once I am better and have been for 3 weeks. It was a little crazy due to them discussing admitting me (yet again) and I was told that I could have my blood test results but failed to get them. This morning I'm feeling a lot better, although a nap would be great right about now lol ! So next week my aim is to get my results and start to get healthy! Is it worth me taking any vitamins now I should I wait til my blood test although it could be another month till that happens

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