Standards Inconsistent - Thyroid Symptoms

[NHSdoesntcare]

Hi, I am profoundly Hypothyroid and have been for over 30 years. Not only did doctors not diagnose me for all this time, but they totally ignored other blood tests which were showing a problem and didn't feel the need to investigate further. I have now been diagnosed with hashimotos, and am presenting as schizophrenic, due to the lack of thyroid hormone my body has been deprived of for the last 30 years, which has damaged all my vital organs probably beyond repair.

I'm still not getting treated for my hypothyroidism though, despite the dire need for it, because after having been given the cheap synthetic rubbish that is palmed off on people I ended up far worse that if I had never been treated in the first place. Both my mental health and physical health is suffering greatly, and I have no support and no trust in doctors anymore. I have changed doctors, to try and get some other form of treatment but to no avail. It doesn't matter which doctor I go with, simply because there are no proper guidelines set in place by nice for the correct treatment of this illness other that the pretty sketchy ones by the thyroid foundation, which only cover the treatment of primary hypothyroidism, and do not take into account the fact that some people are just intolerant of synthetic T4. These unofficial guidelines are taken as law by GP's and healthboards, who will not deviate from them, simply because they have no understanding of the illness and do not have the ability to treat people any more based on their symptoms rather than by what blood tests say.

I recently went ahead and bought from abroad Erfa natural desiccated thyroid, which has made a vast improvement on my quality of life, however due to a change in the regulations I will no longer be able to do this without a prescription, which no NHS doctor will give me, and I can't possibly afford to pay for a private doctor, private prescriptions and buy meds at £100 a time, while living on basic sick benefit.

Why are you so against giving individuals a treatment that works for them, and why do you do everything you can to make doctors too scared to even try this treatment? It may not have passed the new safety guidelines required, but why are you not doing proper controlled tests so that people like me can be treated like human beings and be allowed something that works for them? Why are you so against this form of treatment that was used for over 70 years successfully before synthetic was produced? Why are you allowing people to die? Are you even aware how high the suicide rate is for untreated hypothyroid sufferers? For that matter are you even aware how badly this illness affects peoples every day living? Are you aware that the average doctor thinks that having an abnormal thyroid level is no different that having a shortage of iron or a vitamin deficiency and that T4 is no different that any other supplement? Do you even care?

[MandyJay]

I have suffered from under active thyroid for 10 years. Apart from the doctor taking 2 years to diagnose it by which time I had lost my job and my marriage all due to the illness and the terrible depression and anger moods etc etc. I was offered anti depressants which luckily I refused and wanted to know the cause, not cover it up. Once diagnosed and treated with T4 I did pick up considerably. My moods calmed right down. But I still had no energy, no enthusiasm, it was as though come 1pm almost on the dot my body would literally shut down, it would be all I could manage to crawl on hands and knees up to bed where I would stay for the rest of the day.

I saw a specialist who looked at my notes, poked my stomach, sat down, folded her arms and sais "nothing wrong with you, what do you want me to do". How I controlled my temper, I don't know. Went back to my own doctor who was angry with me and blamed everything on depression and if I didn't take the anti depressants which he offered nothing more he could do. Well how would that cure my lack of energy, my hair loss, my forgetfullness and all the other things that were still wrong with me!

Ithen heard about this doctor, private, who did miracles with thyroid patients. Long waiting list but eventually got to see him. My adrenal was not working properly (very easy test for NHS to perform) and he got that up and running in couple months. Also had candida in the gut (easy home test proved that) and we got rid of that. Gave me adrenal supplements and after a while felt even better but still a long way off.

Now you wonder what my question is. I wanted to give my history so the thyroid experts here could see the suffering I (and many others ) have been through. My whole life was almost destroyed because of the NHS. My miracle worker doctor got me to get T4/T3 tests. 24 hour urine ones as they are more reliable than the blood test. The results clearly showed my T4 was indeed in the normal range albeit in the very low of the range. BUT my T3 was grossly under the minimum, in fact hardly any at all.

Conclusion: T4 was not convrting to T3. Plain and simple. I started on T3 and now 6 weeks later, I don't takeT4 any more but just T3 and I feel wonderful. I feel fantastic, I feel the best I have felt in 10 years.

WHY won't the NHS check T3 levels. And please dont tell me that research has proved inconclusive as WE, the patients are the research and we prove it does work and for some of us it is the ONLY cure.

Is it cost? I know it costs a lot more than T4, but then the number of patients on anti depressants and other medication surely has to cost more in the long run.

I just want doctors to listen to patients and when they say they are still not well, to do something about it and have T3 levels checked.

[MaryF]

Hello there, I have psoriatic arthropathy, hughes syndrome, lupus and sjgroens... clinically I had nearly every sign of hypothyrodism but did not pass the standard tests... I became iller and iller, making my other conditions worse. Having read every book I could get my hands on re autoimmune disease, also many many books written by patients and medical experts on thyroid conditions, and having been to see an independent practitioner have been tested via Genova Diagnostics. My results for this came back showing I was severely hypothyroid and also had very nasty problems with my cortisol. I am now on nutri thyroid and nutri adrenal extra, doing all this under correct guidance and also excellent peer support.. and I am slowly getting much better. My basal temperature before i started treatment never went above 36.1 and my blood pressure was very low. I am now getting better. I just wonder why the criteria in the UK and also lack of detailed examination is so poor for patients. Having read all the forums it would appear that patients really get the rough end of the stick and get shoved on antidepressants too easily. My autoimmune diseases cause funny test results with me at times... but I have now had all my disease verified with bells on having had to chase one private clinic after another. I feel very let down by the NHS, but was previously a fan. I feel most concerned about the culture for both patients and medical practitioners in the field of endocrinology and hope this changes. I totally support Dr Skinners world wide thyroid register and any action taken by thousand of misdiagnosed patients. I hope this culture changes both for medical staff and for the patients.

[Sue Hodges]

It is of great concern that so many people are left with a poor quality of life because many General Pratitioners and Endocrinologists are unprepared to take account of Hypothyroid/Hyperthyroid symptoms when treating their patients, relying only on blood results. Often these results, for many TSH only and others TSH and FT4 are not indicators of whether or not the body is receiving the necessary thyroid hormone at cellular level. When the cells are inadequately metabolised the result is the individual feeling VERY unwell, with extremely poor quality of life. If animals were in the condition of many thyroid patients they would be 'put down' due to their inadequate quality of life.

What does it need to bring the treatment of Thyroid Disease into the 21st century? If it is down to a conflict between medical standards for treating and diagnosing Thyroid conditions and the conflict with a Doctor's Code of Ethics is it not time for one or both to be appropriately amended to enable a patient to be treated and brought back to good health?

I have an endocrinologist who examines me, talks and listens to me and is happy for my bloods to be above normal range because I am feeling well and a GP who doesn't examine me who is rejoicing that my blood is now in normal range, for the first time in 2 years and I have a number of my Hypothyroid symptoms and feel generally unwell. What a waste of resources and my life.

Please may we have practical common sense standards/protocols that serve the patient.

[desperatedan]

Due to the "guidelines" from the RCP and BTF I am unable to get the appropriate medication I require to reduce my hypothyroid symptoms.
I have been told by one specialist that they would be unable to help me because of "litigation". It is a fact that I, amongst
thousands of other UK thyroid sufferers, are being let down by the NHS and have been forced to self-medicate in order to regain health.
What is going to be done to address this willful neglect ?

[Dr Graham Beastall]

Thyroid function testing in the UK is subject to the tightest possible levels of quality assurance. Internal quality control is checked several times a day to ensure that the assays are performing to strict pre-defined criteria and each laboratory is also required to participate in external quality assessment in which it performs blind analysis on specimens sent from a national centre. Overall UK assay performance for thyroid function testing is amongst the highest in the world.

Mary F has symptoms that she believes are of hypothyroidism but the diagnosis has not been confirmed using tests of established international provenance that are performed to the highest quality standards. The problem is that the symptoms of hypothyroidism are non-specific and may be seen in a number of conditions other than hypothyroidism.

[Tillytan]

How can these Thyroid tests be reliable when ones GP is not allowed to do the FREE T3 TEST. When one has had to resort like many have to taking T3,how can it be reliable to just test fro TSH AND FREE T4 when one is only taking T3. The reason for taking T3 is that T3 lowers the BP and T4 raises the BP, so T3 preserves the life of ones heart and kidneys.

[hellohelenhere]

Dr Beastall, I don't think anyone is taking issue with the quality of the laboratory testing itself - but with the parameters applied and the conclusions drawn, leaving many people untreated. Many of these cases can clearly be seen to be genuine hypothyroid cases since, after fighting for treatment, patients do get well on T4, T3, or natural desiccated thyroid. The testing is pointless if it is not usefully interpreted.

[Cherry]

Mary F has symptoms that she believes are of hypothyroidism but the diagnosis has not been confirmed using tests of established international provenance that are performed to the highest quality standards. The problem is that the symptoms of hypothyroidism are non-specific and may be seen in a number of conditions other than hypothyroidism.

Good morning Dr Beastall,

So, might it be quite logical to assume that 'non-specific' symptoms could indeed lead to mainstream misdiagnosis (multiple in some instances) & also why some patients initially 'fall through the net' or are prescribed inappropriate medications to treat non-existant problems but that don't help the real issues?

Cherry

[MaryF]

Good Morning Dr Beastall, thank you for taking the trouble to answer my question. Firstly I would say, hypothyroidism does quite often go with Hughes Syndrome, Sjogorens and Lupus, plus other associated autoimmune diseases. I had all the clinical signs, complete loss of body hair, a morning temperature of around 36, limbs like lead etc etc, losing hair, I quite understand that other conditions can mimic those of hypothyroidism... however I felt that Gevenova Diagnostics were most reliable, I was very very well read before I went down the path of investigating this, and since starting on my medication, my symptoms are improving. My tests came back more than clear. Patients these days, in a lot of cases make sure they are well read, in terms of a cross reference of reading material, books published and also medical papers. It was also brought up in a medical setting that I appeared to have quite obvious signs.... however I had already started down the independent route, having for years been quite dismayed at the culture both for the medical profession and for patients with the use of thyroxine. I will say at this point, I have correctly diagnosed every condition I have, through reading... and gone to see the right GMC registered expert to find that I was correct. However I felt that the best person to see for my thryoid condition and associated needs was Dr Barry Durrant Peatfield, who has also checked all my nutritional needs. I am also married to a chartered counselling psychologist who in his line of work has come across many patients shoved on pill for supposed depression, when at a later date they have had an underlying medical concern not picked up.... quite frequently on the thyroid spectrum. Once again thanks for answering and I wish you well. I shall join a long line of people, hopefully in writing a book. Mary F