Dangers of untreated Hashimotos: I posted a blog... - Thyroid UK

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Dangers of untreated Hashimotos

Alley27 profile image
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I posted a blog on here called The dangers of untreated hashimotos disease in 2012 and the fact that I am living proof that there is a direct link between untreated hashimotos and liver disease. I explained that I had developed auto immune hepatitis and primary biliary cirrhosis and that because doctors rely too fondly on archaic blood tests which were carried out on normal people, often thyroid disease goes untreated just as mine has for 20 years.

I am coping with the liver disease, medication is working, I have good and bad days but, I have developed serious thyroid symptoms. Palpitations, fast heart beat, blood pressure, insomnia, intolerance to heat and cold, low basal temp, in fact just about everything on thyroid uk symptom list.

Anyhow, I went to see an endo on 7th March, and her parting words to me were 'I don't think there is anything wrong with your thyroid, but do these bloods for me and I will see you in 6 months time'. I got a letter from her two weeks later stating that my TSH was completely supressed TPO positive and I have T3 toxicosis. She would send for me in 3 months time.

I went to my Gp with these results; he told me he had no idea what they meant, that they were for a specialist. I left feeling rather rubbish to be honest.

Today I went to see the ENT who actually found and diagnosed the Hashimotos,. Well, what a waste of time that was. He scanned my nodules, saying no change, if anything they have shrunk. I thought well dah; they do if they have been under attack from anti bodies for 20 years, then when the antibodies have nothing left, if they are not kept in check they will multiply, morph and attack something else, in my case my liver.

He asked if I was on any thyroid drugs, I said I wish I was, then perhaps I could get well. He said but you have auto immune liver disease and that can make you feel pretty unwell. I went for him lol.. I said ok so everything that is wrong with me is down to my liver. He just looked. I said "did you see the letter the endo sent"? He replied what letter.. oh and on here your T4 is normal. I asked him what about the rest.. anyway he eventually looked properly at the letter which I produced from my bag and said.. Oh there are some changes then, but your T4 is normal. I said; "so you are saying that if my TSH is completely supressed, and I have T3 toxicosis, everything is alright because my T4 is within normal range". Marvellous!!!

He could not seem to get his head round the fact that T4 was normal therefore nothing is wrong. I was so cross. I said to him then in that case all these symptoms are imaginary. He again put it back on the liver issue. But for information sake my liver function tests have been normal for the last 6 weeks. I mean I have lived with these debilitating conditions for 18 months now, you'd think I know how they each affect me. He even denied the fact that hashi's is linked to liver disease.

I mean give me a break.. how much longer do I/we have to put up with this. He even had the Gaul to say that I have received treatment over the years for all the symptoms I have had. I said yes if you consider over medicating a solution. And if I am being honest, all the unnecessary medications I have had, and there has been a lot; are probably the reason behind all this in the first place; especially liver damage. Treatments for everything except the underlying cause.

I am at my wits end with this. Yes I have other autoimmune diseases that do make me feel crap on some days, but I know which symptom relates to which condition and these more recent thyroid symptoms are new since around February this year. I have had to do my own research about the liver conditions as well as nothing is really known about them either. I also have adrenal fatigue which was apparent when we tried to stop steroids..yeah I have to take them every day and have done for 18 months and believe me when I say they hide things as much as they are insisted they help.

I have 3 autoimmune conditions at the same time can you imagine how I feel on any given day and seeing as they still refuse to treat my thyroid, I still have some suffering to do. I am a fighter though and despite everything I have decided. NO MORE!. I will take charge myself and buy some NDT and attempt to treat myself if needs be. I will be speaking to Dr P if it is at all possible. He may find an interesting case study with me and the relationship between Hashimotos, AIH and PBC. I hope he does probono for those who really need advice but can't afford to go private like me. I would offer myself as a guinapig I am that fed up with feeling unwell.

So again, no treatment, I still feel like crap, am so unwell and symptoms are not liver related. I am worried about the palpitations and pounding heartbeat and the high blood pressure, but hey, according to the person I saw today, because T4 is normal, nothing else matters. I think it is time they allowed the genius of Dr P to take all the endo's Gp's and others who deal with thyroid and teach them from scratch how it should be dealt with, because today is proof they are all cluless.

Please stick up for yourselves where endo's and gp's are concerned, because guys we seem to be in this one alone. Sorry it sounds like a rant but for goodness sake, how do they expect us to function.

Love and Light

conniefused xx

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Alley27 profile image
Alley27
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6 Replies
shaws profile image
shawsAdministrator

Hi conniefused

It is another sorry story and it is awful what you have been through. As you say after a while you get to know what is causing your particular ill-health on a certain day.

It is like hitting your head against a brick wall especially as we are so reliant on these medics to tell us what is wrong and to make us better.

It was the GMC going after Dr P like they are with Dr S, that Dr P relinquished his medical licence so that he was still able to help us even though he cannot prescribe.

I wish you well and hope you recover. I have read that the liver is good at recovering, so let's hope it will with you.

Best wishes

hooper profile image
hooper

Hi conniefused,

I just don't know what to say, what can I say? This is an awful situation for you, and to be ill like this, turn for help to the NHS, where it should be, and you find a brick wall, well, it's criminal. Doctors must know they are letting us down. They have such a high salary and yet put so little in for it especially with regards to thyroid management. This is turning into a rant, sorry, I just feel so bad for you. Keep fighting and big HUGS.....

Jen x

ThyroidHell profile image
ThyroidHell

I am actually waiting this ( I had all my thyroids removed on 24/6 ) but somehow when I'll have my 1st bloodtest since the op I BET they say my thyroid is functioning 'normal'

ladytelita profile image
ladytelita

So sorry to hear this, but not at all suprised. It is a sad thing to expect to be treated like hyperchondriacs instead of people suffering from an illness. How long will it be before doctors accept that we aren't faking it and we do want a life!

Alley27 profile image
Alley27

Thank you for your replies guys very much appreciated. As for liver regenerating, mine can't, I have damaged bile ducts PBC, and while ever antibodies are fighting me it won't get better. Medication helps and controls it as much as it can. I take a medication called mercaptopurine which is used to treat leukaemia to kill of my antibodies and of course the steroids. again something I wish I did not have to take, but is necessary.

I feel a bit better today now I have calmed down lol, and am getting on with it. I am purchasing some NDT today provided it is suitable for the liver. If it is natural the it should be.

Enjoy the sunshine

xconniefused

Moggie profile image
Moggie

Please get in touch with these people and see if they can help - they specialise in cases that the NHS have messed up and if there is ever a messed up case its yours.

hdapatientcaretrust.com/

Please let us all know if you do contact them and if they could help you.

Best of luck and keep fighting.

Moggie x

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