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My doctor does not want to send me for further Thyroid Test as the 'one' he has of five months ago...shows 'normal'

Costas profile image
10 Replies

I have been a coeliac for over 10 years. Generally I keep a good diet but eating out sometimes has given me problems. Now I have decided not to eat outside 'if I can help it'.

Recently I have been feeling very tired and cannot sleep at night. I have been prescribed sleeping tablets. I also suffer from back problems due to 'degenerative spinal disease' Reading this blog I suspect I may have problems with my Thyroid, but my doctor will not send me for further tests as the ones he had after a general blood test showed 'normal'. Any suggestions how I can overcome this? Must I try and make an appointment with Dr O'Donohue who supposedly has my case?

Many thanks

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Costas
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anniet profile image
anniet

Hi there,

I'm a thyroid from the other site just being checked for coeliac problems.

Find out from your doctor what tests they have done in relationship to your thyroid.

You need to be checked for TSH levels, T4 and T3. They don't check for T3 straight away, ask for antibodies as well.

Normal is a word that they use as there is a range where your results sit.

Everyones best number is different.

TSH is best below 1

T4 is best above 16,

T3 best at the top end of the scale.

Each lab may have a different range.

annie

more info and questions can be found on the thyroid site in the communities tab at the top.

Hope this helps a little

Costas profile image
Costas in reply to anniet

Thank you Annie,

I appreciate your advice and will ask again.

Many thanks

glitzygem profile image
glitzygem

I have been feeling tired all the time too and have been for some. So just yesterday I have been looking to see if it is my thyroid, even though my test comes back normal every 6 months. I have found this very interesting article online mbschachter.com/hypothyroid..., and I have nearly all the symptoms and would explain the way I am feeling. I'm going to do the temperature test in the article to see what results I get that way. Maybe coeliacs with thyroid problems have different results to those who are non coeliac? Good luck.

NorthernSoul profile image
NorthernSoul in reply to glitzygem

That article is rubbish. Axillary temperatures can be as low as 35.5C (96F) in an entirely normal person. Probably even lower than that if you've just been outside. Not to mention that body temperature fluctuates according to the time of day and with the menstrual cycle...

glitzygem profile image
glitzygem in reply to NorthernSoul

hmmm, well there are a lots and lots of articles saying the same thing as this article, and I have found another article that answers what your doubts stopthethyroidmadness.com/t.... And this test is not a diagnosis, simply just an additional test that can be done. I will try this anyway and for a longer period than suggested, won't do me any harm lol

NorthernSoul profile image
NorthernSoul in reply to glitzygem

Pseudoscience does tend to perpetuate on the internet.

And no, it won't do you any harm... But if you have entirely normal TFTs then what exactly does a slightly lower temperature on a few odd days mean? And what will you ask your doctor to do about it?

anniet profile image
anniet in reply to NorthernSoul

The thyroid madness article is also a book.

it goes through that doctors treat with numbers not by patient. or the whole picture.

Gp tend not to look at all the symptoms as they don't understand the complete works of the endoctrine system.

Thyroid numbers may be normal for you but the next will need another level.

I have hashimotos thyroidism, an auto immune disease. Coeliacs disease is also auto immune and 6 times out of 10 you have both. thats why i have come to this site as I'm being tested for gluten etc this week. As with some of you I have unexplainable low hb, ferritin vitamin and mineral numbers low basel temp ( take it before you get out of bed)

Take a look at the thyroid site you might find out we are all fighting the doctors for our unexpainable symptoms and illness.

annie

NorthernSoul profile image
NorthernSoul in reply to anniet

I think you're doing GPs a disservice. Most of them are very aware of the symptoms of hypothyroidism- it's a very common illness. But simply taking an axillary (!) temperature for a few days isn't accurate or even sensitive for the condition at all! This is the problem I have with that website. It's incredibly inaccurate.

I hear what you're saying about treating the symptoms, not the TFTs but the doctor has to make a clinical judgement about whether the likely cause is indeed hypothyroidism (if the TFTs are normal) and not something else entirely (or if there's even a diagnosis to be made).

Levothyroxine is not a drug to be pissed around with, as I'm sure you know.

Other autoimmune conditions are certainly commoner in coeliac but the incidence of autoimmune thyroid disease (including Hashimoto's but also Grave's etc.) is only about 5%. Not 60%...

Best of luck with your diagnosis and (though I hope it isn't the case- I'd rather you didn't get diagnosed with coeliac) perhaps we'll be seeing you around the board.

anniet profile image
anniet in reply to NorthernSoul

In reply to doing gps a disservice, In my case not. My gp didn't do any bloods for any symptoms that I saw him for. I used private health care for it. I had a growth the size of an apple on my thyroid which he dismissed as a fat neck. It wasn't until my private doctor removed this and half of my diseased gland, as it was restricting my breathing, the hash was discovered. I had bloods (private) for the iron etc as my gp didn't agree that I had iron issues. OH look no ferritin hb levels of under 9. and tft on the rise again.

and thats a disservice to me.

good luck with keeping well

FionaGFG profile image
FionaGFGAdministrator

This is always a controversial topic. Like Coeliac Disease Thyroid Disease can be hard to diagnose. After all we live in a get slim/ rich now kind of society. Many people who feel tired or too fat will often latch onto a medical problem rather than address their problems with food or exercise. So you can imagine how many times GPs hear 'I'm tired all the time' or 'I think I've got thyroid problems'. However, as we've posted up on this site before the TFT has it's own faults and GP knowledge on Thyroid disease does vary hugely. Plus they have so little time with patients as the NHS is under so much strain it's understandable that many people are seeking advice online. Stop the Thyroid Madness does have some interesting content & I'm currently reading this book: Why Do I Still Have Thyroid Symptoms? When My Lab Tests Are Normal: A Revolutionary Breakthrough In Understanding Hashimoto's Disease and Hypothyroidism

amazon.com/Still-Thyroid-Sy...

I think it's important to try and take the best from the professional medical community and the positive sections from the complementary fields eg accupuncture. Measuring temperature may give you some more information but it won't provide a diagnosis alone as you know. It's worth joining the Thyroid UK group on healthunlocked here for good advice as well:

thyroiduk.healthunlocked.com/

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