Please help me with my thyroid problem

[ignored]

Please stop closing this forum and please respond to the patients on here desperate for help. I was persuaded by my Endocrinologist to stop taking my thyroid medication last year and now I feel so ill I am in tears as I write this.

I have a very long standing thyroid problem that dates back to my childhood, it began at age 10 and due to misdiagnosis wasn't uncovered and treated until I was 11 nearly 12. I had well over a year of doctors telling me there was nothing wrong before I became so unwell my parent were told that I could have died.

I was successfully treated with medication and disharged from medical care when I was 15, this is the last period of my life to date when I was really and properly well.

I became unwell slowly over the next few years and begged doctors for help, they all denied that my thyroid was to blame and told me that all the test results were normal, (given my history I had difficulty accepting this)suddenly they changed their mind told me I had an over-active thyroid and I underwent a sub total thyroidectomy. With hindsight I would never have had this operation had I have known what would happen to me. I don't understand how the doctors and specialists I saw at the time could have been so adamant that nothing was wrong and then change their minds overnight, there was no big change in my blood test results merely a change in the experts interpretation of them. How I wish I had had access to the sort of information available to patients via the internet then and how I wish I could have made a different decision because since that time my health has deteriorated and I have had no help from the NHS, just denials that it could be anything to do with my thyroid. This has resulted in my having a significantly lowered quality of life and now my self-esteem is on the floor.

Please do not get me wrong, I have fought it for all I am worth, I managed to hold down a professional job and got myself some good qualifications including an MA, however all this is worthless as I have been too ill to take advantage of what I have worked for for the past 15 years, 15 wasted and lost years because the NHS has failed me totally.

Years and years ago test results showed that I had very low and at times undetectable sex hormones, very low DHEA, Testosterone, SHBG, Androstenededione instead of this being addressed I was placed on high dose HRT, I believe that this has further disrupted an already struggling hormone situation and made matters worse for me. I cannot get off this medication no matter how hard I try and there is no help available to me. The attitude is either stay on it or come off it and suffer the symptoms, which may go on for 20 odd years.

For many years I suffered from horrendous digestive/bowel problems, I was told that this was due to irritable bowel syndrome, no amount of dietary changes or medication made any difference, it became so horrendous that I had absolutely no life at all, I simply could not leave the house so lost my ability to work and to have a social life. Doctors all seemed to find this normal for someone with 'irritable bowel' Two years ago through my own research I discovered the possibility that lactose could be causing my digestive problems, I eliminated lactose from my diet and almost immediately my digestive problems that had held me captive in my own home were solved. Why did none of the many doctors I had seen throughout the years identify this? These symptoms were so severe that along with my thyroid symptoms it made me sound like a total hypochondriac - and that is how I have been seen. I am not, I have better things to do with my life, none of them include seeing doctor after doctor who dismisses me so abruptly and swiftly.

I did find a doctor who prescribed me thyroxine when I was 41, I felt better but not brilliant, I think this is due to a number of reasons - not the least being my failure to discover the lactose intolerance until a couple of years ago.

Doctors have frequently suspected Cushings and I have been tested a few times for this, always negative so I am told, Cyclical Cushings is still a possibility but given how hard it is to diagnose it's unlikely this will be caught even if I do have it.

The last couple of years since going lactose free and being on 3 grains of Nature-Throid saw some improvements, I seemed to go into a remmission during the summer months and could almost lead a normal life for those periods. I can't tell you how wonderful that has been and how much having had a taste of how 'normal' people live I want some more.

I desperately want some answers to all this, why won't the NHS help me? why am I left to my own devices? I have a very strong family history of endocrine disorders with both a Mother, Grandmother and Daughter affected by this. In fact my daughters life has been marred by poor diagnosis and treatment which resulted in her having to undergo orbital decompression. Major and avoidable ill health caused by the lack of help for thyroid patients. There are also endocrine disorders on my Father's side of the family.

I have discovered that I also have an incidental adrenal adenoma, if I did not have so many symptoms I would think nothing of this, but given my history and continual ill health I am worried.

My current Endocrinologist persuaded me to come off my thyroid medication last May claiming that my symptoms can have nothing to do with my thyroid. Initially all was fine but the joint and muscle pains kicked in quite quickly. At first I thought that if that was all I would have to deal with I could cope. Now it has got excruciating and I am in a lot of pain, I know it's a thyroid symptom I've had it before and it's gone away when on thyroid medication. My eyes are so sore and keep going red, they feel gritty and unpleasant. My hair (the most distressing symptom for my self esteem) which began to go when I was 40 has begun to shed again, I keep getting infection after infection, I am exhausted all the time, my cholesterol has gone up, my temperature is all over the place I am either sweating or shivering. In short I have deteriorated significantly since stopping the medication.

I have so many questions for you that I need to spend an hour or two discussing this face to face, it's hard to get it all down in this format, impossible but I do want some answers.

My body swells and bloats, no matter how hard I exercise and diet, can you tell me how it is possible for someone to have dieted carefully and done loads of exercise for years cannot maintain a reasonable body size? I did very hefty aerobic exercise and hefty weights for some 20 years - why did this not work? I can't work out to this level anymore as I'm so unwell since stopping the mees and in order to maintain my weight I have to follow a strict very low carb, lactose free diet. I still accumulate fat particularly around my abdomen yet I often eat just once per day - yes, I have tried sensible small meals more often. My muscle tone is non-existent despite the fact that until I got as ill as I am now I did 5 miles per day on my treadmill, it's like I'm wasting away (in muscle tone only) I have horrible red, swollen hands and fingers. My nails keep breaking and have changed beyond recognition.

The ref ranges for my thyroid are TSH 0.3 to 5.5 - mine is 5.82, Free T3 3.9 to 6.8 - mine is 4.1 and Free T4 12 to 22 - mine is 11.7. my TPO 581.0 (ref <100.0)

Prior to coming off meeds and on 3 grains of Nature-Throid I had a TSH of 0.1, T3 5.4 and T4 12.4

Why do I feel so ill since stopping my medication? why are my hormones (DHEA, Testosterone, SHBG, Androstenededione) so low and some undetectable?

Why is my morning cortisol low? recent saliva test showed the following:
Cortisol
Sample 1 (8am) 11.8 ref 12 to 22
Sample 2 (12) 10.8 ref 5 to 9
Sample 3 (4pm) 6.2 ref 3 to 7
Sample 4 (12) 1.7 ref 1 to 3

Why do I feel so bad since stopping my meds? why, with such a strong family history and many mis-diagnosis am I told my thyroid is fine? if not that then what? How do I make myself well? Do I have Hashi's? why do I have high TPO's?

Please tell me what you would do in my situation, please tell me what to do about my lifelong thyroid condition and please tell me why there is so little help for people like me.

Thank you

[Dr Petros Perros]

Sorry to hear of all the difficulties that you have had. It is difficult to provide answers to your questions based on the information that you have provided. I think your endocrinologist and your GP would be in the best position to advise you. It sounds to me that the treatment that you had with thyroid hormones did not ameliorate your symptoms. Based on the information provided you seem to have Hashimotos' thyroiditis assocaited with marginal elevation of the serum TSH. Unfortunately the vast majority of people with this pattern of thyroid hormones do not respond to thyroid hormones. Recently it was documented that people who have positive TPO antibodies (as you do) and entirely normal thyroid blood tests are more often than expected experiencing symptoms such as tiredness. The underlying cause is unclear.