What tests shall I request?

[urbangirl]

I had a TSH a year ago last November (2.24 = result). I have NCGS, raised cholesterol and glucose, weight gain and problems losing the weight, (even though I am on low carb diet and exercise daily), muscle/tendon problems (tendonitis in my shoulders, bursitis in my hips, other undiagnosed problems with my knees, shoulder blades and low back pain) and low temperature 36.1-2. My GP is going to repeat the TSH test and considers my muscle problems age related - I have had some of these problems since 1989. I would like to exclude any thyroid problems and because the GP was resistant to different testing I am going for private testing. Despite reading as much literature as I can and following this website I am completely overwhelmed by the tests available. Do you think that I should have T3 and T4? I would like to have a vitamin B12 test too but I don't think the package allows for this.

I was completely fed up after the GP visit. Demoralized and worried. Because I had read stuff about the TSH test, which was normal in my case, yet I considered I may have some symptoms of hypothyroidism, I thought I would see if I could get T3 and T4 - or even vitamin B12 test which were not offered - I didn't understand the resistance to testing.

Any advice is so welcome.

[Marz]

You need the full Thyroid Profile : - TSH FT4 FT3 Anti-TPO Anti-Tg and also....

B12 - Ferritin- Folate- Iron - VitD....

Check out all the companies offering private testing with Thyroid UK. Am sure they will all be helpful if you liaise with them and discuss your needs......

Good luck !

[urbangirl]

Thank you Marz will look up the companies.

[shaws]

This is a link re private testing:-

thyroiduk.org.uk/tuk/testin...

The companies usually give a discount if you put Thyroiduk or a code which they give you.

thyroiduk.org.uk/tuk/diagno...

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/testin...

[urbangirl in reply to shaws]

Thank you Shaws - this is all so new for me! Trying to understand it all but I get the impression my experience is not unusual. Is there a reason for a resistance to testing from the GP and relying on the TSH?

[shaws in reply to urbangirl]

The GP's are following the guidelines laid down by the British Thyroid Association and the RCoP that all that is required to diagnose a thyroid gland problem, is the TSH - and for hypo it should reach 10 before prescribing. If your TSH is 'within range' the labs normally wont test for T4 or T3.

Before the blood tests came in (around the '60's) patients were diagnosed on clinical symptoms, history and by appearance, as doctors were trained to do as student doctors but that skill has gone out of fashion and diagnosis is by TSH only. A few doctors will take clinical symptoms into consideration if your TSH rises to around 5 they will prescribe.

[jezebel69 in reply to shaws]

Thanjs for this - I did manage to get my GP to request a full test after 9 years of varying levo meds and only tsh testing.. T3 was ignored by the lab and despite almost all the other results being borderline on the bottom end of the ranges - nothing has been done. I will now fund my own tests but not sure where to go with results??

[urbangirl in reply to jezebel69]

Crikey 9 years! I may not be here if I have to wait that long! The other thing I picked up from here was whether the medical profession acknowledge the results from private clinics. From my point of view it seems uneconomical in health care provision because if you can diagnose (or eliminate) and treat something early then it surely saves money in the long run. But if you keep putting this off the patient will keep coming back as they are still suffering. And of course there is the continuous discomfort and pain for the person.

[jezebel69 in reply to urbangirl]

LOL thats just 9 years post diagnosis - it took 8 years of missed symptoms before we arrived at that point. Previously I was sent to a psychiatrist for depression, a dietitian for my weight gain, prescribed a hearing aid for my tinnitus and ENT for post nasal drop and sinusitis. All pretty expensive (none worked)

[urbangirl in reply to jezebel69]

Well seems similar route to me! Yesterday I was offered a dietician for weight gain, (last year I did see a dietician for gluten free advice (learnt about FODMAPS elimination diet which has been successful for this aspect of diet, but she was useless on weight loss - very prescriptive and didn't seem to believe me when I told her it was difficult for me to lose weight) I told doctor I knew a lot about diet etc I wanted to know why the weight won't come off; doctor will examine my ears for tinnitus (BTW this tinnitus is like wind chimes) and check deafness at another appointment. No suggestions regarding the joints/muscles! I do monitor my blood pressure and pulse - my resting pulse is usually 51-54 beats per minute - goes up of course if I am a bit cross! BP is okay - usually between 105/56 - 120/68. I do a lot of exercise so this could explain this. I think the doctors think that my exercise contributes to the damaged tendons.

You make the point that I consider key - all these referrals to different places haven't worked and there does not seem to be a holistic approach which in my opinion seems to be essential in the first instance. Also whilst we know that GPs are very busy, yet people still have to make appointments because of the inappropriate referrals. Surely this creates more work for the doctors.

[jezebel69 in reply to urbangirl]

You might like to read this article in the online Pulse magazine. Its intended for healthcare professionals only so if you have a problem registering to use it let me know and I'll copy and paste the contents in a PM for you

pulsetoday.co.uk/clinical/w...

Some GP's do understand and can get it right

[urbangirl in reply to jezebel69]

jezebel I am unable to access this - only registered users have access.

[shaws in reply to jezebel69]

Always get copies from now on of your blood tests, with the ranges, for your own records. If you have a query with your thyroid gland tests you can post them on a new question for advice.

[silverfox7]

The easy answer is that they don't know/understand what they are doing and may be frightened of being caught out or proven wrong! I was sent to see an Endo because my GP thought I was over dosing. The Endo said I

should cut back my dose, (that was before he ran any tests), my results showed FT4 at top of range but there was no range for FT3. I asked, was told I didn't need to know, I kept insisting so was given the upper level. I asked Practice Manager to get the ranges for me and that showed a strong possibility that I'm not converting well.

[urbangirl in reply to silverfox7]

Silverfox I think I have read that some Endos don't always agree either. I really want to find out if I have an under active thyroid as I have some symptoms. If I haven't got an under active thyroid then I will be relieved and try to work out what else could be causing my symptoms. Is this really complicated to discover?

[shaws in reply to urbangirl]

Obviously some clinical symptoms can overlap with other diseases but if you think you have a thyroid gland problem you need specific blood tests, as stated on one of the above links. You can have private tests and Thyroiduk.org also have a list of NHS Endos/private doctors but am not sure if the NHS endos require a referral from your GP.

[urbangirl in reply to shaws]

Shaws thanks for this. I have replied to Silverfox7 which answer some of your advice.

[silverfox7 in reply to urbangirl]

Just had another look at your results and it shouts out you have an under active thyroid. Getting a medic to agree is the difficult part. Marz advice is good and if the fuller thyroid tests (please post any you have done) back up that you have a thyroid problem then change your GP. you could start by talking to another in the practice but if no joy you may have to move to another one but even then there is no guarantee. Alternately you could ask to be referred to an Endo but get a list of the recommended ones from Louise first so you are prepared to suggest someone. Good luck.

[urbangirl in reply to silverfox7]

Thank you Silverfox - yep getting a medic to agree is a really tough task! I have seen another doctor in the practice but she has a similar opinion to the one I saw yesterday. Because my regular doctor is unavailable until April I thought it might be good to get another opinion. I have been at this practice since I was a child! Seen a lot of doctors come and go! It is a good family practice and changing GPs may be going from the fat into the frying pan like you say. I don't want to go to an Endo yet - I just want appropriate blood tests. I am minded to just wait now and get the TSH results in a fortnight instead of getting private testing. I actually felt completely wrecked after the appointment yesterday and interestingly felt that the doctor was trying to steer the discussion into saying I was stressed and depressed. Despite being prepared for discussion with medics it is sometimes impossible to take control. I tried to explain that I have raised cholesterol and glucose the advice is to lose weight to reduce these, but despite being on low carb (and GF) diet and exercising+ it is not shifting (I don't understand how I put on the weight in the first place either). Exercising has become difficult as I keep getting muscle/tendon problems. So the medical questions must surely be why aren't I losing weight and why do I keep having tendon/muscle/joint problems? I thought there was a great deal of rationalizing my symptoms in the consultation eg joint/muscle pain expected when you get older. I did say I started getting these problems years ago - 1989!

[silverfox7 in reply to urbangirl]

Yes you do get the feeling you can't win! I once breezed into the doctor saying I felt great and was told that because I was upbeat I must be over medicated (again)! Can't I just be normal? The real normal this is. I sometimes think they don't want you to be well. I've also been asked in the surgery if I felt like I was sixty. I just said I've never been sixty before so I don't know. Thankfully they didn't expand on that one! I do though know that if I don't feel right and think I have an idea of why then I do expect to be able to discuss it and not have it dismissed as not a possibility when I already have a known problem in that area.

[eeng]

Whatever blood test you have done for thyroid, make sure it is done as early in the morning as possible because TSH is highest then.