After 7 years of pain and misery I want a chance to get well ,.
Let me explain in 2012 I was happy working full time and being self sufficient for my family and children when I became sick with a virus (I was told as I was unable to complete small tasks ,making mistakes, straight to bed on return home due to being over tiered ,pains between my shoulder blades over sleeping for days not even being able to inform my employer ..After a couple of episodes and no diagnosis I was sacked from employment .then to find out I had a abnormal blood reading and I had to start a Tablet that would sort out a gland in my throat ..
My brother was on medication for a underactive thyroid at the time so wasn't made a big thing of in the family ..
Then the depression hit I felt like I had the weight of the world on my shoulders most days lay in bed parylised from the stinging pains and negative thoughts crowded me ,I got stomach cramps through the night for no reason ..my insides would come flooding out ! I would flinch tremble panic..
Would attend the doctors .have blood tests cry ..take suicide notes ,was told so belived it was a mental health condition..and medication..and morphine patches for the pain in my spine due to scoliosis .
Not long after the death of my father from hypothyroid and cancer at 65 did I accept my fate. I got to spend 10 months with him before he passed in the most traumatic way .
I saw that as a failing on my part and attempted my own life .hospitalised for 9 months on and off as feared for my own safety..
I now know I'm not mentally ill and probably never was .
FF>>>2017
Miserable swollen sore all over, loss of bladder control ,mental confusion ..thoughts of death I had realised in the past if I missed a dose I felt better ..my only option if I have a heart attack and drop dead then so be it was my fight back ..I followed the doctors ..
All the doctors that had known me all my life had gone so I fluctuated between the usual 3 not getting pain relief required telling them I felt better but not well on stopping the levothyroxine in Nov 2017 ..
I'm sore my head hurts I sting I cramp im laying awake dreaming of all the things I should be doing..and I'd managed to lose weight and 2 dress sizes (see pics) looked fab but felt lousy and my mental health began to creep back in faintly ..
On seeing all 3 doctors and following all blood tests requested I reluctantly agreed to reuptake the levothyroxine as basicly told they couldn't treat any other symptoms until my thyroid levels were treated and I remember crying and begging but left with no other option..August 18 ..25 then 50 then 75 then 100 then 125 was the doctors plan for me ..without required anxiety meds ( I told myself that was because I'm showing as suicidal ) that's what I get for confessing to them hoping what they say will help me. that's what I told myself ..the doctors cared that's all ..
I am prescribed 7 x 2mg diazepam PRN a month ..
So I began leaving 2/3 weeks between increase and bam overnight my symptoms creaped back one by one and the episodes began I felt worse and struggled to recover ..I used all my strength to recover in November only to be hit with a 4 day episode and has left me still recovering today. I had no choice I had to stop my levothyroxine I already knew this why was I talked back into it ..by the grace of God I don't know how I'm not dead 15th jan 2019
I went to see all doctors with my mother to explain my situation so she could be witness to the lack of compassion or understanding .
They have heard of all my side affects and refer me to mental health as I'm loosing this battle im preparing my mum and family for their loss ..
There is no cure the doctors are at a loss with me and I don't feel have listened to me ..until now maybe.
My mum has been my angel and offered to rush me with my blood tests to a spire endocrinologist..
I really don't want to go on at this point im lowest of the low.
Well no shit Sherlock I have grossly abnormal Thyroiditis?
Hashimotos ..
Game changer or is it
The only medication t3 I'm relying on to help me is no longer available on NHS uk .
Endocrinologist figures this medication may cost 1900 a month and could be eligible for a trial of a t4 t3 combo .
He will request a prescription from gp by referal .
I broke down again like a Peice of me had accepted my death sentence on t4 and I'd just had to agree to take it yet again .
15th Feb 19.
Heartbroken and confused I'm going to be a lottery as to being prescribed it by my gp..shall I just give in I feel like a burden now and it's not nice.
After a rocky start with the gp on monday 25 feb 19 11.29 and a flee to A&E in a distraught state ,there a doctor listened to me and said he understood me completely but it was an emergency department and unfortunately had to be delt with by my usual gp . He also said I explain myself in a clear manner and know my words ,hence this rant ..
I think he thought I was demanding a MRI ,I wasn't.
Ironically he said I would have to have been in a rta to warrant one . Tut crossed my mind on the way to the hospital but knew after I walked out on the doctor and left him sat with my mum that she wasn't far behind me and how could I do such a thing on innocent people too ...
If there is a afterlife I'm not going to be very well thought of ..I have forces keeping me here my family and friends .
I find out Wednesday 27th feb if the powers that be will allow me to trial the combo as that's all that's left to save my sanity and eventually my life ..
If I never ask for anything else from anyone ever again I pray just for the chance to put my plight out there ,
I know I'm not alone on this medication it's cropping up in people all over the world daily and by stopping the only medication available to me I don't know how much more suffering I can take please help me .
So sorry to hear of your difficulties and from how you describe things it’s sad and feels very unfair what many people have to or are going through with Hypothyroidism. So glad you have your mother’s support. Hopefully it can settle and you can find the strength to take things a bit at a time. You will find such excellent support on here to continue and improve how you feel. It’s such a difficult disease to deal with and I know how it can knock us back every day in some way. Sending you a virtual hug and so sorry for your pain.
Hold on!! You are not alone in this. If gp won’t prescribe buy it and go alone. Ask gp (beg for a private script to buy from Germany). Get baseline bloods done and the knowledgable people on here can guide you on how to go forward.
I dont have Hashi but I’m sure some will be along.
You’re cry for help will not fall on deaf ears here.... my love
You have come to the right place at last, for help.
I cannot advise too much on T3
.. I am HYPERthyroid ... Graves Disease.... but I do know many people on here have your set of symptoms and will lovingly help you.
You’ve suffered badly and have been misunderstood by medics .. and I do know what that feels like ...Awful !!!
There comes a time with Thyroud disease that we must empower ourselves .. or sink.
That’s what it felt like to me anyway.
So empower yourself now Luvvie and read all you can about your condition.
Kind folk on here will guide you along . It would be a great help to them if you could print out here your last blood results including numbers in brackets which will help them see what’s going wrong.
Then sit back and wait for a great deal of help to come your way .. because it will !
Your Mother must be worried sick about you .. but she’ll also be glad you came here when you begin to get it together and start to feel good again
Good luck Luvvie ... and be strong
It’s your body and you can help it get well again .with help from others here who have suffered too and know how you’re feeling .
Hello I have walked in your shoes... after being very ill on Levothyroxine..horrendous side effects too many to list but felt like I wanted to curl up and die... GP totally useless / and the hospital they are in no way good for thyriod patients... very limited knowledge ( if you ? them they take the high moral ground we know best etc) but and there is always one... through research I have just started to take NDT natural thyriod being treated by a hompath doctor... perhaps this might be a path you could consider...
So many of us do not get on well with Levothyroxine Treva brand is a common one with lots of side effects.. in my mind for me an evil drug ...
But take heed if you take matters into your own get bloods and vitamins tests done to see how yor health is ... the NHS only do basic cheap tests which do not show the true results...and perhaps try a hompath because GPS are will not prescribe T3..
So be kind to yourself and know your not alone
Take care I do hope you will find away to better health.. x
I’ve reread your post a few times but I do find it a bit difficult to follow. So, you think a virus started it all off and you have Hashimotos ( I do too). You think levothyroxine causes side effects of depression and pain? Are you thinking the pain is due to scoliosis or a side effect?
I can understand why they want to sort out your thyroid meds first, as that may cause depression if not treated - feeling lethargic, low, tired etc.
I’m not familiar with diazepam but presume that is for anxiety.
The gist I’m getting is that you think t3 is what you need and they won’t prescribe it. If so, then I think people on here may be able to help. Sadly not me as levothyroxine does a good job for me.
My thoughts are If you self treat then you do need to let the doctors know, just in case it affects other treatment, such as drugs for anxiety.
Wow! I was prescribed Valium (brand name of diazepam) about 50 years ago when I told my doctor that sex was painful. He said the Valium would help me relax. I took it only for a few days until I came across an article about how addictive it is and how terrible the withdrawal can be. BTW, I later figured out that sex was painful because my (first) husband had decided that now that we were married, he no longer needed to indulge in foreplay.
Oh my!! Wasn’t ‘Mother’s Little Helper’ by the Rolling Stones written about Valium because so many women were prescribed it to help them get through their day?
Thank heavens society has moved forward and thank goodness you had the good sense to realise it wasn’t right for you.
I want to help if I can. You’re obviously struggling and more than likely need that T3. Have you had your T3 tested yet? It’s very straightforward to have it tested and the Endo at Spire May have already tested. You can buy your own medication online with guidance you can get well. Please don’t give up when health can be yours. If you have Hashimoto then you absolutely need to go 100% gluten free with your diet I can help you with that too.
If you have Hashimotos then I’m afraid you really should go gluten free. It’s not the end of the world to not eat wheat. It just takes a period of adjustment as does having hypothyroidism. Acceptance is key to this. There’s a lot that frustrates me about this disease but going free is quite a minor inconvenience compared to the constant dieting/monitoring of food intake/insomnia and mood swings etc etc!!
You have come onto the Right Forum and members will respond and I am so sorry that you have had to suffer excrutiatingly for many years and not understanding what's going wrong in your body.
The majority of us are flummoxed especially when we keep getting told there's nothing wrong with us.
I am also sorry regarding your family bereavements and trying to hold the 'whole family' together.
The problem is that people who are hypothyroid 'look normal' but doctors fail to understand completely what is going on inside and we're pleading for help/understanding but it's gone elsewhere.
Your Endcrinologist wont want to jeopordise his livelihood so you should write to Lord Hunt in the House of Lords. All of the Lords were shocked that T3 was withdrawn from patients who need it. It is not our fault that the T3 was increased so much and many of us cannot improve or recover without it.
We used to have 'option's in thyroid hormone replacements, the oldest and life-saver is NDT (natural dessicated thyroid hormones) but due to the British Thyroid Association making False Statements about a product prescribed from 1892 onwards and still in use today - regardless - it was withdrawn. Then they've withdrawn T3 and caused panic amongst those of us who are well on it.
Thyroiduk has a Petition before the House of Lords. First of all make an appointment to see your MP and talk to him about the awful strain you are undergoing at present and how unwell you are in being refused a life-giving thyroid hormone due to cost.
You can tell your Endo that you are contacting your MP and give him a copy of the following and also to your local MP.
This is the procedure to follow when getting a blood test as all the doctors seem to look at the TSH (thyroid stimulating hormone) alone, which is not appropriate for us, the patient. First of all:-
All blood tests for thyroid hormones have to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between levothyroxine and the test and take it afterwards. This helps the TSH to be at its highest as that's all that the medical personnel seem to take notice of.
A Full Blood Test - which is rarely done - is:
TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.
GP should ensure that B12, Vit D, iron, ferritin and folate are also optimal as deficiencies also cause symptoms.
You can buy your own T3 or NDT and stick two fingers up at the GP. Not free, of course, like levo, but you'd get your life back
Please try to stay strong love you can do it because I am doing it, I’m new here as well and just started NDT because levo made me so ill. Buying it has left me almost broke but I’m slowly getting a bit better every day. I am hypo also cfs/fibro and ptsd I’m on 2 mg diazepam as well which helps me a lot. You will get help on here I know I did xx
The hormone the thyroid produces is needed by every cell in the body. Think about that for a minute. If your thyroid doesn't work properly every cell in your body is affected. But if you have symptoms other than the common ones you see listed on Google, your Endo/GP doesn't think they're associated with Hashimoto's.
Here's my experience (everyone's is similar but also unique): first sign of hypothyroidism was panic attacks when driving. I thought I was going mad. Then followed by extreme fatigue. Finally got put on levothyroxine. By this time my stomach acid was so low I was not absorbing nutrients from my food, thus deleting my stores of minerals and vitamins. ( another consequence of hypothyroidism). Two years into having symptoms, (now I have leaky gut and food sensitivities, as well as anxiety and fatigue/weakness) I found this site and started researching Hashimoto's. I started demanding iron and vitamin tests from my doctors. Endocrinologists did not care about low vitamins and minerals. But iron, folate, B12, vitamin D3, magnesium, stomach acid, they are all very very important to feel well and utilize T3 and T4 which the thyroid produces.
My Endo wanted to give me really high doses of levothyroxine, which gave me panic attacks and heart palpitations, and combat that with beta blockers for the heart and Clonazepam for anxiety.
I spent a year supplementing my iron but nothing improved (it actually went down) until I started taking B12 and betaine pepsin to increase stomach acid.
So my advice to you is "research". I read all the questions and responses on this site!! Read Izabela Wentz book about thyroid disease.
Many people ( there are 70k on a face book group I joined) have the same symptoms as you and are being wrongly treated. Some people are allergic to the fillers in levothyroxine. Some people cannot convert T4 to T3- sometimes this can be addressed by addressing low iron an vitamins, sometimes you need a T3 T4 combination.
So sorry to read you had and still have very little support from the medics but this is easily the best thyroid group I have come across and you will get loads of help and advice. Remember though it can take time, not antibodies fault but that's how it is so be patient. Keep posting as you go along and also post any new readings you get with their ranges as they differ from lab to lab and we can help and advise.
This forum is run by Thyroid Uk so have a look at there site as lots of useful info as well. Don't try to do it all at once, as I said patience is often needed but I'm sure you will get there. I would start with getting the vits etc tested and work at getting them optimal as they help your thyroid to work much better. That takes time to get levels up if they are very low but again post yourcredults and ranges and help will be given. Manybif us have to keep supplementing to keep levels where they need to be.
Ask you doctor for copies of bloods he has done over the last 6 months and post them with the ranges and that will give us a better idea of what is actually happening in your body and then we can address them but get started on testing Vit D, B12, Folate and ferritin first as they help your thyroid work better and may well help with symptoms as well plus improve your general health. If you have various short falls then start with the lowest one but then leave a couple of weeks before adding in the next and so on. Sometimes the medication can disagree with us so spreading out the start helps to show which it is if you get that problem.
There is light at the end of the tunnel and you will get there in time so hang onto that thought.
It can't have been easy writing your story so well done for that. You have already taken a big leap towards wellness! You may not feel like it is but that first step is often the hardest one to do.
Hi and thankyou for that I always struggle in a morning as feel worse than when I went bed for having slept ? And gutted that I do wake up and have to go through another day on none functioning body and full on stinging pains ,stiffness and fulltime ringing in my ears,which mentally ruins me , I have all my bloods tested and will now contain them all in my next post ..
Many thanks Tam
Post your latest blood results, you have a right to copies and if your GP has not taken them ask him to do ferretin, folate, vitamin D and B12. It would also be good if you took your pulse and temperature first thing on a morning. It is possible that you could be Ok on the levo but that it is currently making you toxic due to your body not being able to use it properly due to lack of the above vitamins or adrenal issues. We can support you to get better but there is also a list of more helpful doctors available via the TUK website. You may need to source your own T3 or NDT but one step at a time.
In the mean time take plenty of rest, you are not well and you need to be kind to yourself. There are some meditations by somebody called Kabot Zin that I find helpful that might help with your symptoms. In the mean time. You are physically not mentally ill. Use the Valium sparingly if it helps. I find a very low dose of amitriptyline really helpful for anxiety you might want to ask you GP if you can try it about 10mg. Gentle exercise, walks, gentle swims, pamper yourself, be kind to yourself. There are lots of us on this mission with you.
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Found this on a persons FB page A letter for patients, family and friends - I am Hashimoto's Disease
Hashimotos..Pulling my hair out - yes, bad joke I know.
Started taking Carbimazole last week, then came down with a sore throat and found out my white blood count was low. What will happen now?
Hashimotos??? Or am I just a crazy lady?
