If You Are Diagnosed

• Once you have been diagnosed, try to see the same GP/endocrinologist every time you make an appointment. It makes it much easier to discuss your progress.
  
  
• Be aware that if you are diagnosed with hypothyroidism (myxoedema), you are entitled to free prescriptions. Ask your GP or NHS hospital for an FP92A application form. The form tells you what to do. A certificate/card will be sent to you upon receipt of a properly completed application form.

If your doctor diagnoses you with thyroid disease, he will probably start you on treatment. Information on the different treatments is found in our leaflets, Hypothyroidism and Hyperthyroidism. Treatment is usually started with small dosages. You will probably be told to be tested in two or three months and then make another appointment. Your doctor will then look at your test results, discuss your symptoms with you again, especially any improvement, and then make a decision as to whether or not to increase or decrease your dosage.
 
Your doctor will decide when to keep you on a particular dosage. This is usually decided by looking at the blood tests. However, some people still remain ill at this point. If this happens, we suggest the following:

Hypothyroidism

You will need to be patient as it can take a long time to improve. It takes about 7-10 days for the levothyroxine to enter the body's cells properly so don't expect any improvement before then. Some people do see improvement in two weeks but for many it can take several weeks and even then, only some of the symptoms will improve in the beginning. If you have been ill for a very long time, it can take many months before you are back to normal.
 
You may find that you have some good days and then some bad days again. You need to be careful not to overdo it until you have found the right level for you (your set point).

• Ensure that you are taking your levothyroxine with water, on an empty stomach. Wait for at least 30 minutes before you eat.
  
  
• Ensure that you do not take calcium carbonate (found in calcium and other supplements and antacids) within four hours of your levothyroxine as this affects absorption.
  
  
• Ensure that you do not take iron supplements within two hours of your levothyroxine.
  
  
• Other drugs that have been reported to reduce levothyroxine absorption include ciprofloxacin (Cipro), raloxifene (Evista) and Orlistat/Alli (Xenical) so be aware that it may be better to take these drugs away from your levothyroxine.
  
  
• Coffee can also interfere with absorption of T4 so do not take your levothyroxine at the same time as drinking a cup of coffee – it's probably best to wait at least an hour before you drink coffee.
  
  
• Try taking your levothyroxine at bedtime as there was a small study that showed this benefited some patients.

If you still feel ill it could be for various reasons. Some people do not feel well on a particular brand of levothyroxine. The only main brand in the UK is called Eltroxin and some people feel better on this. The other brands are all called generics (copies). Some people feel better on one generic than they do on another. Try to work out if you feel better on a particular generic and ensure that this is the brand given to you by the pharmacy. If one particular pharmacy does not have it in stock, try another pharmacy.  Pharmacies may be purchasing whatever is cheapest at the time of ordering so you may need to insist on health grounds.

• If you don't feel better on the generics, discuss with your doctor the possibility of being prescribed Eltroxin to see if this improves your symptoms. Eltroxin needs to be mentioned on the prescription rather than levothyroxine. Be aware that pharmacies are now allowed to change the brand on your prescription to a generic without telling you so do check that you are actually given Eltroxin. Some people actually feel better on a generic than Eltroxin, though, so you need to be aware of this too.
  
  
• Some people have a lactose intolerance.  Levothyroxine contains lactose. There are brands of lactose free thyroxine available on a "named patient basis" – see our "Named Patient Basis". Discuss with your doctor the possibility of being prescribed lactose free thyroxine instead. Contact us for details of these medications.
  
  
• You may not actually be on enough levothyroxine. Dr A Toft writes in the BMA book "Understanding Thyroid Disorders", "The consensus is that enough should be given to ensure that levels of T4 in the blood are at the upper limit of normal or slightly elevated and those of TSH at the lower limit of normal, or in some patients undetectable." He also states, "Although, by taking excessive thyroxine, a sense of well-being, increased energy and even weight loss may be achieved in the short term, there are long-term dangers to the heart and a possibility of increasing the rate of bone thinning and therefore encouraging the development of osteoporosis.  
   
  This book is available from pharmacies, bookshops, www.amazon.co.uk and can also be borrowed from our library.
  
  However, there has been recent evidence to show that it may be safe for patients taking long-term thyroxine replacement therapy to have a low but not suppressed TSH level. The patients who took part in the study who had very high (more than 4.0mU/l) or suppressed (less than 0.03mU/l) TSH levels more frequently suffered from heart disease, abnormal heartbeat patterns and bone fractures compared to patients with TSH levels in the normal range (0.4-4.0). Patients who had a slightly low TSH level (0.04 - 0.4mU/l) did not have an increased risk of contracting any of these conditions.
   
  Take the booklet and details of the above study to your next appointment with your doctor and discuss the possibility of a further increase of levothyroxine. If you experience signs of over-replacement such as feeling very hot and sweaty, have a tremor and fast heartbeat, you should contact your doctor as soon as possible to discuss going back to your previous dosage.
  
  
• Some people do not convert their thyroxine adequately into T3. This could be due to lack of certain vitamins and minerals or possibly due to a faulty gene - there has been recent research showing this possibility. The researchers concluded, "Our results require replication but suggest that commonly inherited variation in the DIO2 gene is associated both with impaired baseline psychological well-being on T4 and enhanced response to combination T4/T3 therapy, but did not affect serum thyroid hormone levels." This means that some people do not convert but this doesn't show in their blood tests.  Discuss with your doctor the possibility of the addition of T3 to your levothyroxine. To see a discussion about this written by Dr Gary Pepper go to:
   
  http://www.metabolism.com/2009/10/03/breakthrough-discover-t3-genetic/
   
  http://www.metabolism.com/2009/11/07/breakthrough-discovery-thyroid-hormone-therapy-part-2/
  
  
• Some people feel better taking natural desiccated thyroid (NDT). This is what was used before synthetic levothyroxine came on the market.  It is available on the NHS on a normal prescription on a "named patient basis" but some medical bodies do not like patients being prescribed this even though patients may feel better on it.
   
  On 19th November 2008 The Royal College of Physicians, in particular its Patient and Carer Network and the Joint Specialty Committee for Endocrinology & Diabetes; The Association for Clinical Biochemistry; The Society for Endocrinology; The British Thyroid Association; The British Thyroid Foundation Patient Support Group and The British Society of Paediatric Endocrinology and Diabetes issued a statement, endorsed by the Royal College of General Practitioners, entitled "The Diagnosis and Management of Primary Hypothyroidism". This statement was also mentioned in the BMJ Editorial entitled, "Diagnosis and treatment of primary hypothyroidism - New guidance highlights how to do it in primary care".
   
  This Statement includes a statement in the "Conclusion", "The College does not support the use of thyroid extracts or thyroxine and T3 combinations without further validated research published in peer-reviewed journals. Therefore, the inclusion of T3 in the treatment of hypothyroidism should be reserved for use by accredited endocrinologists in individual patients."
   
  Dr John Lowe published a rebuttal to this Statement where he discusses various papers in respect of direct comparisons of levothyroxine and natural desiccated thyroid and which showed that the effects were similar on hypothyroid patients. One of them states, "a daily dose of 100mcg of T4 was on average equal in biologic activity to 101mg of desiccated thyroid; 60mg of desiccated thyroid was equal to 60ìg of T4."
   
  The article does state, "If no obvious cause is found the patient should be referred to an accredited hospital endocrinologist or general physician." However, many doctors are unwilling to refer patients to endocrinologists for hypothyroidism.

Thyroid UK has often heard that doctors state that "There are no studies comparing natural desiccated thyroid (NDT) with levothyroxine."  If your doctor states this, give him a copy of Dr John Lowe's paper - http://www.thyroidscience.com/Criticism/lowe.3.16.09/bta.rebuttal.htm
 
Thyroid UK has also often heard that doctors tell their patients, "You never know how much of each hormone is in the tablets."  This is untrue. NDT goes through the same process that levothyroxine goes through and is tested to ensure that the correct amount of T4 and T3 is in each tablet. United States Pharmacopeia (USP) is the official public standards-setting authority for all prescription and over-the-counter medicines and other healthcare products manufactured or sold in the United States. Thyroid USP state that thyroid tablets should contain not less than 90% and not more than 110% of the labelled amounts of levothyroxine and liothyronine, the labelled amounts being 38ug of levothyroxine and 9ug of liothyronine for each 65mg of the labelled content of thyroid.
 
The American Food and Drug Administration (FDA) have had concerns about potency and stability in brands of levothyroxine. In October 2007, the FDA announced that it is tightening its potency specifications for all levothyroxine (sodium) to ensure the drug retains its potency over its entire shelf life. Thyroid UK wonders if this could be a problem in the UK too but it is very difficult to obtain this information.

Hyperthyroidism

The usual first treatment for hyperthyroidism is Carbimazole but some patients do not feel very well on this. Itching can be a side effect that is unbearable. If this happens to you, discuss with your doctor the possibility of trying a different drug. Propylthiouracil (PTU) is an alternative that some people find much better.

Patients are usually kept on Carbimazole or PTU for up to 18 months before other treatment such as Radio-active Iodine (RAI) or surgery is offered. Some doctors feel that patients can actually stay on these drugs for longer than that. If you decide that you would like to wait before RAI or surgery discuss the possibility of staying on the tablets for a while longer.
 
Try to work with your doctor. Getting cross or abusive with your doctor is not helpful. If your doctor is not willing to discuss these issues with you, then perhaps it's time to find another NHS doctor. If you cannot find an NHS doctor that will work with you and you are still ill, it might be worth visiting a private doctor (see our Private Doctors and Practitioners leaflet).

Page last updated 19/01/2012