12 years ago I was diagnosed with Hashimotos. I was prescribed Levothyroxine. For 11 years I had problems on Levothyroxine. I would lose energy. I’d be sent home from work or to hospital on many occasions. Out walking my dogs and get very weak and have to sit or lay down for a while. No Dr could explain what was wrong. Then last year I was getting weaker and weaker after my GP increased my Levothyroxine as TSH was high but T4 was high too however, T3 wasn’t checked. I collapsed at home. Taken 999 to hospital. Series of test. T3 was too low. Endocrinologist said no Endocrine issues. Sent to cardio ward. Kept in for a week series of cardio tests. Nothing found. I couldn’t walk properly. Swaying with no strength. I kept collapsing at home. Went back into hospital further 2 times. Endocrinologist referral to neurologist at Walton Ctr on routine. Had to wait 4 months for appointment. Still collapsing. Now in wheelchair. I paid privately to see neurologist after 2 months waiting. No neurological issues was found. I saw 4 neurologists in total. No issues. I found Thyroid UK. I was always convinced in my heart it was Endocrine. My adrenals very low and my TSH was 29(0.35-5.56). After reading posts on here and posting my own blood results I quickly found out I wasn’t converting T4 to T3 from the helpful members and administrators. I wrote to my Endocrinologist asking for a T3 trial as in such a terrible way now. I was refused and told once again I didn’t have a Endocrine issue. But my T3 was scrapping the barrel and cortisol below the range. Still refused. After posting on here several times with fantastic replies and help I was pointed in the direction of a private only Endocrinologist in Oxford. I went to see him and within 2 consultations he explained I wasn’t converting T4 to T3. He wrote to my GP to prescribe T3. It was refused by NHS Endocrinologist. Private Endocrinologist then provided me with a trial of T3. Immediately starting T3 my life came back. It was and is incredible. A whole year had gone by since I was first hospitalised. I lost my brilliant job as I was a contracted consultant. The waste of money for the NHS has been criminal. My GP wrote to my NHS Endocrinologist requesting I have T3 and again refused. This NHS Endocrinologist even wrote a letter to my GP not copying me in saying I needed a psychiatric assessment. The T3 trial was very successful. Last week the NHS Endo finally ate humble pie and prescribed me T3 to my surprise. Now I have it and health is just great
Without this most helpful and informative forum of administrators and members I would never have known what was wrong with me. I would have never have been diagnosed by the brilliant private only Endocrinologist I was advised to see from an extremely helpful administrator volunteer on Thyroid UK. I cannot praise this forum enough and will be forever in its debt for the help and support this past year. Now it’s my turn to carry on with that help from my experiences.
Thank you so very much Thyroid UK for saving my life.
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McPammy
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Thanks Paula. I’m so glad you’re better too. I hope you find the solution to your daughters problems soon x
Wow! I'm sure The Thyroid Trust would love you to submit your story - they are campaigning with the other patient groups for better access to T3. Link here: thyroidtrust.org/submit-you...
I too see an endocrinologist in Liverpool. Actually, I saw several registrars over about 3 years with little success, getting increasingly worse symptoms, before I put my foot down and insisted on seeing head of department. He wasn't much better. I argued with him several times that I thought I needed T3. He kept disagreeing with me saying "no proven efficacy". Eventually did testing for DIO2 gene and it turns out I am heterozygous for DIO2 gene. Before I got the results back, I managed to persuade this endo that I needed T3 (this was just after the NHS consultation) and he eventually did prescribe it. Then needed to persuade my GP to write the prescription - another battle. After being on T3 for just a month, I had another appointment with the endocrinologist - yes, it took nearly 3 months to persuade my GP to prescribe. Anyway, I felt so much better and at the next appointment I told my endo that I felt much better on T3. He said to me "no proven efficacy for T3, only works if you have a polymorphism" I said I have a polymorphism, I'm heterozygous for DIO2 gene. Well his jaw dropped and he asked how I knew. I told him that I'd done private testing as the NHS won't do it. I gave him a copy of the report. He was almost gleeful (I suppose he now had proof for his bosses that he had a reason to prescribe the expensive T3). He told me that I could increase T3! Can you believe it?
Anyway, the upshot is, that I still battle with this endo, because he says ridiculous things to me like T3 only affects the QOL and not the numbers, so I tell him, that I;m not "paint by numbers" and that I'm only interested in QOL.
Without all the magnificent thyroid forums and in particular, this one, I wouldn't have had the information to get myself well. So a big thank you from me too to all the wonderful people who give their time so freely to help others!
I'm now battling breast cancer and having similar battles about treatment. A 1.1cm tumour seen on an ultrasound scan turns out to be 4cm on an MRI that I insisted on and the treatment is completely different. The Consultant radiographer told me and the surgeon that it was a bruise from the biopsies! Another battle that I just don't need.
Is there any chance you could pm me the name of the endo you saw in Liverpool please.
Also any tips on how you managed to persuade them you needed T3. I have an appt on Wednesday in Liverpool and was refused T3 last time, my T4 and T3 results are even further apart than they were last time I went so am really hoping to get a script for a trial of T3 this time.
It was <consultant name>. Took me a few visits to persuade him. I’d been ill for 5 and a half years. I did private tests for DIO2 and I am heterozygous for DIO2.
Please do not identify doctors by name on the forum. Send a Private Message to the person asking.
27. Do not post information about specific endocrinologists or doctors on the main board without their permission as this may result in unwanted attention from certain areas of the medical profession. If you wish to discuss a particular endocrinologist or doctor, you may mention his/her name and location, providing that you ask for comments by private message only.
Apologies. Just didn’t think! Got a lot on my mind at the moment with the breast cancer diagnosis and treatment plans that keep changing. 5 weeks since I started having tests and still no treatment!
Gosh you’ve been and still are going through the mill too. Your story makes my heart sink. This bloody T3 business is criminal with the NHS. Why can’t their supply chain get it else where. I got my first T3 from Germany for £57 for a years supply privately. Brilliant that you got the DI02 test done. I received my test on Friday. Today I’m posting it off.
When I went to see my local Endocrinologist last week. Who is just outside of Liverpool area. He told me as he was reluctantly writing out my prescription that in Liverpool no Endocrinologist can now write out a T3 prescription anymore. He really didn’t want to give me my prescription I felt. I didn’t ask for it. I thought he’d written me off and I’d have to keep private. Anyways he did and now to my real surprise I have T3 on the NHS.
And now you have to go through a similar situation with breast cancer. Oh my good god what is up with these doctors. I’m guessing it’s always been bad. You can be lucky and find good ones occasionally I’m hoping. Now with the internet and forums people are much more clued up than ever before.
I do hope you are not too bad right now. I thank you for replying in such detail to my post. There is a light for all of us out there to head to. I wish you well and hope your treatment is a success. Keep positive, it sounds as though you do x
I do wish the medical staff would listen to the patient. After all we are living with the condition. We know how we should feel and we know how we do feel.
I’m seeing a private endocrinologist in September and hope he can shed some light on why I feel so rubbish.
I am so pleased that your journey has a happy ending, but extremely sad that it has gone on for so long and your concerns and symptoms have been dismissed all this time. I wish you continued improvement and lasting good health.
PS - I love your dogs and I hope you have lots of lovely, healthy walks with them
Oh no McPammy, I'm so very sorry about your dogs They are a such a big part of our lives aren't they, my little dog is the reason I get up in the morning and she gets me out and we've made lots of friends (dog people are usually very friendly I find), she's 9 and I hope she's around for a long time to come.
That’s lovely that your little dog is so important to you. I know what you mean completely. They were my purpose in life as well as my job. I don’t have children so they were my children. I took them everywhere with me. Sadly they’ve gone to doggy heaven. I think about them everyday. Last year I could not have walked them at all being so bad and in a wheelchair a lot. I believed they were sending positive vibes to help me get better.
Enjoy your walks and time. 9 is still very young for a smaller dog. The smaller they are the longer they live. Mine where 13&14 when they died. They were the size of a Labrador.
So many thyroid patients have needlessly lost jobs, and years of their lives. Your story is yet more proof that the way many, many thyroid patients are treated (both in terms of attitude from the so called professionals and prescribing of medication) is nothing short of criminal. It's good to hear that at least this endo has finally given in and stopped fighting the battle. Hopefully he will continue on this positive path with other thyroid patients that need his help.
Yes it is criminal I believe. These doctors can wreck people’s lives instead of bringing them back to health in full knowledge of what they’re doing. That to me is the criminal and immoral bit ‘in Full knowledge’.
I hope you’re ok and thank you for your support sincerely x
That is fantastic news, just sorry you had to endure rockbottom health before finally getting correct diagnoses and meds. What an utter disgrace though that this wasn't picked up sooner, highlighting deep flaws in the medical profession.
Problem is that it was picked up last May but the Endocrinologist kept refusing my request for a T3 trial. He sent me to neurology then they couldn’t find anything so they diagnosed me with functional disorder. I wasn’t having that I thought. So after many months and still in my heart thinking it was Endocrine I found this forum and found my private only Endocrinologist who finally diagnosed me. But then the battle began once again with NHS over T3 costs. From beginning to end a nightmare.
I do hope you are ok. Thank you so much for taking time out to reply to me. X
Think Im in the same position as everyone else whose not correctly diagnosed. I had MRI head scans, muscle electrode tests, urine tests for infection (surprisingly came back clear), meds for ear infection to treat dizziness despite having no symptoms of infection and have also been prescribed anxiety and depression meds. It wasn't until a while back when I requested my med records and researching I finally realised my thyroid was the cause, which also led me to this platform. My next appt with my GP is going to go very differently. Im amazed at both the lackadaisical approach to treatment and general lack of knowledge. After 4 years of increasing symptoms I now consider their approach to be negligent, especially as my GP has refused to do the full thyroid function tests. Aside from the number of patients falsely diagnosed with mental health disorders, the endless pointless blood tests screening for everything but thyroid I wonder how many NHS patients have further health conditions which could be related to untreated thyroid?
I’ve been toying with this idea. I was gutted about my job and still am. And regarding my health and the loss of a year. My partner and I was abandoned by the NHS. We were out of our depth and didn’t have a clue for many months on how I could get better. Thanks to Thyroid UK was my route to health and our happiness again.
Yes John. Without him I don’t know where I’d be. Without his confirmation and actually prescribing me T3 the NHS Endocrinologist would not have prescribed it. Also my GP has been very supportive with putting pressure on the NHS Endocrinologist.
Go see John and see how you get on. If you have an issue he will help you. The first sentence he said to me was ... I’m going to make you well. He did!
After such a long road to recovery and knowing the stress ahead if you took legal action I am sure this is how these 'specialists' get away with what surely is medical negligence. Their decisions are either based on misinformation or are financially biast. Proving that would probably be very difficult. I'd just be thankful I was getting better and getting my life back, although writing a formal complaint may make you feel better as I think it stays on their record?
I’m really sorry to hear what you have gone through. That is so bad. I doubt I will be going down the route for medical negligence, although that’s exactly what is has been.
My sister was sent to see an Endocrinologist. He said there was no Endocrine issues, he then said she had depression or ME. She left quite upset as she too had a lump on her neck. She changed hospitals and went to ENT. They did a fine needle aspiration. They found thyroid cancer too. She had it removed 2 weeks later. She has been under ENT since and only just had an Endocrinologist appointment after 6 years! They won’t give her T3 only T4. She suffers quite a lot.
I can’t believe that he caused you to have a total hysterectomy too!!! That is shocking and at child bearing age You May have needed counselling for the trauma of it all
Oh my goodness. How scary for you. Glad they got on to it quickly.
I was annoyed that MRI was not routinely done as I could have been spared a lot of anguish. The mammogram did not find the tumour, I did, so it made perfect sense to me that they should have done an MRI. I have TED and in 2017 during an MRI for that, the found a benign brain tumour! I have had so much wrong with me since being diagnosed with Hashimoto’s and I’m just sick and tired of battling! Glad you’re OK. xxx
I think as you are on here that you are a member. I didn’t do anything else but put posts on and answer posts.
They don’t contact Thyroid UK. It’s a way of you getting the result via another health practitioner direct to you without going through your Dr.
I did the test. Then I got an email once done to pick a time and say for someone to call me with the result. Then they send you the report by email. You can then print it off. This way costs £150 in all or direct to your Dr costs £85.
I hadn’t seen an Endocrinologist for 11 years. Last year I saw an NHS and a private one. The NHS Endocrinologist was terrible. The private one was brilliant.
The test could tell you that you need T3 medication
Bless you, so happy to see you have your life back
What amazing story !
I’m also Diagnosed with Hypor 3 years with medication but dont see any better, seem to get worst.. doing research here and tested T3 privately as NHS rejected and GP seem to be No help
I’m trying to learn over stories here bit by bits to find out my problem.. Hope it get fixed soon and get my life back same to you 🙏
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They are a such a big part of our lives aren't they, my little dog is the reason I get up in the morning and she gets me out and we've made lots of friends (dog people are usually very friendly I find), she's 9 and I hope she's around for a long time to come.
New GP withdraws previous repeat T3 prescription despite DIO2 Inefficient T4 to T3 conversion (confirmed on Genetic testing 2022)
Low T4 still T3 improving
Thyroid Bloods Advice?
Thank you GP!
WTAF just happened?
