Getting a Diagnosis

It's quite possible that you have been ill for some time and have visited your General Practitioner (GP) on many occasions regarding some symptom or other. 
 
If you have read our information and if you have a lot of the symptoms of hypothyroidism (Myxoedema/underactive thyroid) or hyperthyroidism (overactive thyroid), think about making an appointment to go back to your GP and discuss some options with him. Your doctor will need all the information about your health that you can give him. Give your doctor copies of anything you have written down so that he can read it and put a copy in your record. It's better to be specific about your symptoms or your doctor may miss something. 
 
For instance, if you have to have the heating up high in your house all the time because you are cold and people make comments about this, tell your doctor. If you find yourself going to bed early, waking up late and sleeping all afternoon because you are so tired, tell your doctor. If you walk around all day in shorts and a t-shirt and have the windows open all the time, even in winter, because you are always very hot, tell your doctor.
 
Try to be clear and precise when you speak to your doctor. It might be an idea to take someone with you if you can, not only for support but also so that they can remember what has been said.  How often have you come out of the doctor's surgery and forgotten nearly everything that was said to you? This person may also be able to confirm what you are telling the doctor.
 
Undiagnosed hypothyroidism or hyperthyroidism can cause a great strain on the heart.   Hypothyroidism can cause coronary atherosclerosis (furring up of the arteries) due to high cholesterol levels.  Dr Rowan Hillson tells us in her book, "Thyroid Disorders", "Lack of T3 and T4 alters fat metabolism… and this can lead to furring of the coronary arteries (coronary atherosclerosis) and reduction of the blood supply to some of the heart muscle.  
 
This causes angina… - pain in the chest on exercising, which is usually relieved by rest. Coronary atherosclerosis can cause angina, a heart attack or coronary thrombosis."
 
Hyperthyroidism causes the heart to beat faster and increases the risk of stroke as well as atrial fibrillation (fast and irregular heartbeat).
 
It is therefore very important not to miss a diagnosis of hypothyroidism or hyperthyroidism.

Thyroid UK suggest a step by step approach:

Before you make the appointment

• Find out whether you have had any previous thyroid tests done.  If you have, find out exactly which tests you have had done and make a note of them. The most common thyroid tests are Thyroid Stimulating Hormone (TSH), Free T4 (FT4) and Free T3 (FT3). Sometimes the thyroid antibody tests will be done – Thyroid Peroxidase (TPO) and Thyroglobulin (TgAb) - but not often.  Sometimes the receptionist will give them to you over the phone but you will probably need to go into the surgery and ask for your test results.  You have a right to see your medical records under the Data Protection Act 1998.  Guidance on The Data Protection Act 1998 can be found at: http://www.ico.gov.uk/for_the_public/topic_specific_guides/health.aspx
  
  
• Do not just accept "normal". You should always ask for the actual figures of your test results – your level as well as the ranges. Be aware that different areas in the country use different test ranges so one TSH test range might be 0.5 – 5.0 but in another area the TSH range might be 0.4 - 4.0. You could be "borderline" (near the bottom or top of the range) or have "subclinical hypothyroidism" (high TSH and normal FT4) or "subclinical hyperthyroidism" (low TSH and normal FT4) and not be aware of this because you have not been given the ranges of the tests. Subclinical thyroid disease is not usually treated although treatment may be useful.

The 2006 Thyroid Function Test Guidelines state, "There is no evidence to support the benefit of routine early treatment with thyroxine in non-pregnant patients with a serum TSH above the reference range but <10mU/L." which in layman's terms means that patients who have a TSH of less than 10 need not be treated because it doesn't help.  However, they also state that, "Physicians may wish to consider the suitability of a therapeutic trial of thyroxine on an individual patient basis." 
 
If your TSH test is above the range but less than 10, it might be an idea to discuss these Guidelines with your doctor as it may persuade him to give you a trial of thyroxine. In our experience, patients with signs and symptoms of hypothyroidism who have a normal TSH and low normal FT4 also benefit from a trial of thyroxine.
 
Your FT4 could be nearer the top of the range usually and therefore with a low normal level, you feel quite ill. As you probably did not have your thyroid tested when you were well, you will never know if this is the case.  Discuss the possibility of a trial of thyroxine with your doctor if you have low normal FT4 levels.

• TSH has a circadian rhythm (24 hour cycle) and levels peak between midnight and 6am.  T3 has a similar circadian rhythm. It is therefore a good idea to have your thyroid tests done at the same time of day each time as your levels may differ at different times of the day.
  
  
• Start to keep a diary and include your thyroid test dates, thyroid test results and their ranges, any other tests such as B12, folate, ferritin, cholesterol etc that you have had done recently, basal temperature (see our Basal Temperature Test leaflet), pulse rate and weight.  Your diary will soon start to show a picture of your health and whether things change or not.
  
  
• Tick off all the symptoms you have on our Hypothyroidism or Hyperthyroidism Symptom List, adding any symptoms you have that are not listed and rate them on a 1-10 scale with 10 being the worst.  Do this at regular intervals – at the same time as you have tests done is a good idea and then you can see how you are feeling and tie this in with test results. This will also help you know at which level you feel best for future reference.
  
  
• Find out as much as you can about the thyroid before your appointment so that your doctor can see you are well informed.  Copy information from our Information Pack or from thyroid books and highlight the relevant areas so that you can show these to your doctor.
  
  
• Make a list of questions you want to ask your doctor. Make sure you have space for your answers.  Add to the list as you remember things.

At the appointment

• Give your doctor a copy of your diary and list of symptoms and explain some of them if necessary.  Explain exactly how your symptoms are affecting your quality of life and your work – explain the things you used to be able to do but can't now. "Before" and "after" photos sometimes help too.
  
  
• Ask your doctor if you can have all the thyroid tests available if you have not had these done. Many doctors only do the TSH test.  However, some doctors believe that all the tests need to be done i.e. TSH, FT4, FT3, TPO and TgAb. This will ensure that other thyroid problems are not missed such as non-conversion of T4 into T3, Hashimoto's disease, central (secondary) hypothyroidism or Graves' disease. Be aware, though, that your GP may ask for FT3 to be done but the lab that the test form goes to may refuse to do it.
   
   
  There is a paper discussing the fact that early treatment of euthyroid (normal thyroid hormone levels) Hashimoto's Thyroiditis with thyroxine may slow down the disease process. There is also evidence that shows that anti-thyroid antibodies can cause infertility and miscarriage. It is therefore a good idea to find out if you have high thyroid antibodies and discuss treatment with thyroxine with your doctor.
   
  If your doctor is not able to do some of the tests on the NHS ask if you could have the blood drawn at the surgery in order to have private tests done by a diagnostic lab such as Genova Diagnostics (see Genova Diagnostics leaflet). Sometimes the NHS lab will do private tests if asked.
  
  
• Ask your doctor to check your B12, folate, ferritin and Vitamin D levels as deficiencies of any one of these could be a reason for your ill health. The symptoms for Pernicious Anaemia are very similar to those of hypothyroidism. The range for B12 is quite wide and some patients feel much better at the upper end of the range.  The BBC produced a programme regarding this - "Inside Out 30 Oct 2006 - Vitamin B12 Deficiency" - which you may be able to watch online.
  You can find more information on the website of the Pernicious Anaemia Society http://www.pernicious-anaemia-society.org/
  
  
• If your doctor suggests seeing a consultant in a different field to endocrinology, perhaps a rheumatologist, it might be a good idea to do this. It will either show up another health problem or it will rule it out completely.  This often happens when patients are referred to psychiatrists.