Just want to talk to people who really understand!!

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Hey everyone!

In thought I would just come on here and meet people who understand, maybe swap stories and tips!

My story is; I was born with congenital hypothyroidism. As far as I know I was a few weeks old when I stopped breathing, I was firstly treated for meningitis to later diagnosed with congenital hypothyroidism.

I have memories of taking my tablets on a spoon with a drop of milk and going to the consultant regularly for Xmas rays, blood tests and check ups! I always felt special when I was young because I got time off school and I was treated differently to everyone else, even my sister!

My mum used to deal with everything, my medication appointments and anything I needed, then she passed away when I was 13. My world ended and so did my feeling special for my condition.

I had to remember myself to take my medication and help remind my dad (who worked most hours of the day to provide for us!) Of appointments.

I had horrific periods, the pain was so bad some days I couldn't leave my bed and the flow was so heavy.

I was always the fat one, called pig and school and never the girl the boys fancied.

I manged to get through school and college and started uni. There is became depressed due to delayed bereavement and of course with a little help from my condition.

Meeting my boyfriend after uni brought me out of this but I still suffering with weight gain and it has lead to an eating disorder.

I notice my sensitivity to temperatures, muscle aches, brain fog, memory loss, numbness and much more now I'm old and mature enough to realise it is all linked.

Of course I get tired so easily too but I have never known what it is like to be filly charged! People never quite understand when I say I'm tired just how tired I really am, I don't think people can unless they have experienced it themselves.

I am living my life the best I can. However I want to start a family soon and I am so scared this condition will put be back yet again and stop me from being able to do this!

If you have got this far thanks for reading! It's good to get it off my chest!

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  • Posted

    Hi, I'm really sorry you've been through all of this. It was bad enoigh when I was diagosed with hypothyroidism at the age of 28, although I suspect I had it from the age of 14.

    What medication are you taking? If it's thyroxine and as you have no functionung thyroid, you may be unterested in my story as I've switched to Natural Desiccated Thyroid (NDT) and feel much better for it, best of all I've lost weight and feel more alert.

    Here's my story in the hope it will be of use to you (with apologies to those who have heard it before!)

    In May 2015 when I became intolerant to the fillers in all the synthetic thyroxine meds, I needed an alternative, and quickly. (I even swelled up with liquid thyroxine).

    I opted for the NDT ThyroGold because I could get it quickly without a prescription.

    It was really scary buying it off the internet: would it have in it what it said it did? Would it harm me?  Would it work?. Was it a scam?

    I've been on ThyroGold since 23rd June 2015 and had monthly blood tests, monitored by my NHS GP. To give you an idea of dosing: I weigh 53kg, I started on 150mg for 4 days then increased it to 300mg (150mg twice a day - upon waking and then 7 hours later) for 2 weeks. Then 450mg (300mg upon waking and then 150mg 7 hours later) for 2 weeks. Then 600mg (300mg upon waking and then 300mg, 7 hours later) for 2 weeks, then 750mg (450mg upon waking and then 300mg 7 hours later).

    At 750mg my symptoms subsided - no longer cold, skin and hair not dry, muscle fatigue gone and muscle stamina now good, brain fog diminished (not completely gone but probably due to poor sleeping habits i.e. reading this forum until the early hours - something I'm trying to stop doing!)

    I've was on 750mg for 5 months. Then I tried increasing to 900mg blood tests (for T3, T4 and TSH) and symptoms showed this was too much, so I dropped it to back to 750mg. After a couple of months at 750mg I lowered it to 600mg and the same blood tests and symptoms showed this is too little. So I've now (from mid March 2016) settled on 750mg.

    I read everything on the site I bought it from before embarking on this course of action - particularly the questions and answers and the 3 free chapters of Dr lowe's book that explains it all, including how to spot if you are over medicating.

    My blood test results in February after being on ThyroGold for 5 months were as follows.

    3 Feb 2016:T3=3.7 (2.6-5.7)T4=14.0 (9-19)TSH='repeat request - following result is from 8.1.16 and is valid for 27 days'=1.5 (0.4-4.9)

    Results from 8 Feb 2016:T3=6.3 (2.6-5.7)T4=16.4 (9-19)TSH=0.02 (0.4-4.9) - I took ThyroGold on the morning of this test, so this is what one would expect - I'm getting enough thyroid hormone so the pituitary gland isn't asking for any more thyroid hormones (it does this by producing TSH), hence the TSH reading is low

    Note: to take a dose which is not a multiple of 150mg (which is the snallest size ThyroGold comes in) entails pulling a capsule apart and only taking half of it. ThyroGold isn't like thyroxine, because it contains T3, one can't just take 600mg one day and 450mg the next if one needs a dose of 525mg.

    I have a theory that the people who have no functioning thyroid do better on NDT because it replaces the T3 their thyroid is no longer making.Note of caution: if you do decide to switch to NDT it is essential for you start on a low dose and build up slowly. Your body needs to get used to getting T3. (See tpauk for dosing instructions).

    I am not medically qualified and therfore I'm not qualified to advise you, I am merely saying what I did and what the results were, so you can use it as one source of information to make your own decision. ThyroGold is classed as a 'nutritional supplement' so that people like me can buy it without a prescription, but don't be misled, ThyroGold is a very powerful drug which is used instead of thyroxine. All the best.

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    • Posted

      Thank you so much for sharing! If I'm honest I've always just gone along with whatever because I'm so used to it! ! I nevereally knew there were other options! Xx
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  • Posted

    Hi there you are right is is good to get things off your chest and chatting on here has helped me. I started off with hyper and because that couldn't be controlled with medication I got iodine treatment so now I'm hypo. I totally understand when you say you are tired, alot of the time I have no energy at all and it's hard. I get the muscle aches and pains too and the brain fog, I am so forgetful it's terrible. I was diagnosed with severe anxiety and ocd last year and I do think my thyroid has had a big part to play in that. Sounds like you are trying really hard to live a productive life and that's great. speak to your Dr about starting a family and see what they say, maybe therapy would help in discussing the hard times you have been through and letting that out. It's true you never know how anybody feels unless you can walk in their shoes. Sounds like you are doing all the right things, keep going. Best of luck with everything you do. Stay strong. cheesygrin
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    • Posted

      Hi Elaine

      When you said that you had iodine I assume thhat you were referring to radio active iodine. 

      I was wondering how you reacted to RAI.

      There are so many mixed reports from people who have had it. I myself am wondering whteher to have it done . I am in agony with muscle pain and throbbing joints. Did the treatment help you .

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  • Posted

    Hi Cindy. Yes it was radio active iodine treatment. It was a tablet I took at hospital then came home. First of all it did cause me to have a really sore throat for a few days. So many things to follow once you have had it, couldn't interact with my children, no cuddles etc..different plates, washing cutlery seperately, don't travel on public trasport or in the car with folk etc.. etc... I think most of these rules were for 28 days, can't quite remember. To be honest I have kind of just went from all the hyper symptoms to all the hypo symptoms. They just could not sort the hyper out with meds so I had no choice. I put on so much weight after it maybe about 4 stones. I still have muscle pains and aching joints, was always hot even when hypo but over the last few months really feel the cold. Really tired to the point it feels like I could sleep for hours and hours but just can't. Find concentrating quite hard and very forgetful. I must be honest and say I also suffer from anxiety but I do think my thyroid has a big role to play in that. That's just me though I am sure there are loads of people that have benefited from RAI treatment. Good luck with whatever you decide. cheesygrin
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    • Posted

      Thanks for your reply Elaine.

      Thanks for being honest. It is a hard one to call when the outcome is uncertain.

      When you developed a sore throat after RAI  did you have any antibiotics or did you recover spontaneously?

      Anxiety - tell me about it, terrible since becoming hyper etc.

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  • Posted

    Hey Cindy no I didn't need any treatment for the sore throat. It is hard but as I said I had no choice and had to get the treatment. Maybe have that conversation with your GP or endo Dr. It does work for so many people, I just had to be awkward !! The anxiety sucks, I have found that very hard to deal with, very hard. Again the very best of luck. I wish you well.cheesygrin
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    • Posted

      Hiya Elaine

      Thanks for your speedy response.

      I have had a terrible few days with anxiety a lot of it due to the aches , pains in my joints and muscles. So much so that I am considerng buying a new bed.

      I just wanted to ask you if I may if you got any relief at all from your aches and pains after dstarting your treatment?

      Thanks for your kindly help, it is very much appreciated.

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  • Posted

    Hi Cindy sorry your anxiety is bad just now, I know how you feel. I wish I could say something positive but I would say the aches and pains are still the same.What I would say is before, I felt generally unwell all the time. I still had all the pains etc.. but unwell also, but it's more the aches and pains and tiredness with foggy head and that dumb anxiety. The general feeling of being unwell is not there so much and it is more specific, I so notice my sore joints etc.. This has been ongoing since 2007 and probably before that but 2007 was when I was diagnosed. It's a chore for sure and I'm not sure people understand when you say my legs are sore or I feel so tired, just what it's like. Good luck to you and hope your new bed is more comfy for you if you get one. Anything to feel a little bit better. hang in there. cheesygrin

    The last wee bit of your message never came through ??

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    • Posted

      hiya Elaine Thanks for your reply. sorry about the bit at the end of the message it should have been edited out!!

      I know what you mean when you say that people uderstand what we mean by sore legs or I feel so tired. it is so scary. I hate the sensations. I pray that it will stop or at least become more tolerable., This morning I was aching all over it is awful. I don't know what to do, I keep changinfg my furniture, what suits one day in terms of comfort does not another day. Wat a dilema. Keep wishing I could win the lottery and buy a mansion with with different lots of settees and chairs so can get comfy! Anyway can always dream.

      Catch you later

       

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  • Posted

    Thanks Cindy yeah can you send the link please.I did wonder about fibromyalgia but 'Im sure my GP will say it's anxiety too, it causes so much tension etc.. I would love a lottery win too, could get the best and comfiest of everything, would at least help a bit. Best of luck. cheesygrin
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