Thyroid- Can it be dodgy with a normal test?

[petra27]

Does anyone have any experience of this?

I have had my thyroid tested several times and the results are always fine. But I am still suspicious.

I have huge family history of thyroid problems on my mums side- all the women seem to have it, and when I look up the symptoms, it sounds just like me.

I'm thinking about it again today as the wife of one of my husbands friends (who I've only met a couple of times) just posted me an article about someone with an underactive thyroid with 'you need to read this!!' written on it.

It is not even the first time someone has given me one of those articles which I doubt happens to most people.

Briefly my symptoms are: always freezing (to the point where it is a joke to people who know me), constipated no matter what I eat or drink, I put on weight very easily, I have hair loss, I am very tired, particularly in the morning when I'm not really 'awake' for a good while, and I don't really have much of an outside on my eyebrow.

There is a lot of stuff online about thryoid and how you can have it with a normal test, but these seem to be american and or weird, not mainstream UK stuff.

Can anyone advise please?

This is a good UK based non woo website re the thyroid:-

www.thyroiduk.org.uk/tuk/index.html

I would seek further medical advice, many GPs are not at all up to speed when it comes to such issues and thyroid problems can and do get missed.

'non woo' is a great expression,
I'll look up the website now, thanks

never heard of the eyebrow symptom before and from experience docs will tell u its not hereditary though I got it at exactly the same age as my mum.

the only way I can describe my tiredness before the drugs is zombie like, I'd sometimes get to the end of the day with no recollection of it!

I saw one doc who finally agreed to give me a test, saw another doc to get results who gave me a months trail of drugs and then saw first doc again for review he refused to give me more and told me I was probably stressed, should take a mental state test and ensure I ate 5 fruit and veg a day

anyway one private doctors appt later (thank god for generous parents) and I do have a thyroid issue but I have a T4 in balance not a TSH one which is rare. now everytime I have a review I have to remind them my TSH is irrelevant or they'd stop me again.

so in short yes u can have it and not show on a normal test cause of the way they are reading the results.

In short, OP, yes. The only "normal" is your particular normal. Most GPs believe that if your TSH is below treatable levels then it is subclinical and therefore "normal". But as the obstetric endocrinologist who finally after 7 years prescribed me levothyroxine said, "you're not subclinical if you're symptomatic". I would hug that woman every day if I could.

Please keep on at your GP until you get referred and/or treated. Even being referred to an endocrinologist is no guarantee though- I was and was sent away without treatment (for a further 3 years) because my TSH happened to be 4.8 on the day I went (ie just below treatable levels).

This is so helpful because apart from the eyebrow, this is how I feel too. I've just had a test that came back normal but am due back to the GP this week because I just feel so rotten. Hope you get sorted OP. I can really sympathise. I was quite upset to get a 'normal' result as I hoped they'd be able to give me something to improve this zomboidness.

The website is really good. Thanks for the link. Just had a quick look.
I hope all of us get sorted out.

Yes you jolly can. Alternative health practitioners all say the 'normal' bar is set too low on standard tests.

Before you dismiss the crunchy cereal lot as woo, bear in mind that other standard tests, such as the BMI ratings, have just hastily been revised after doctors realised the limits weren't right for a lot of people.

I can so identity with this thread. I'm in a battle with my doctor too. Going for another blood test on Tuesday. I have a small mole on the side of my face. I have noticed that when I'm okay that I have a hair that grows out of it. I need to shave or pluck it out every 2 or 3 days when I'm on the right dosage of thyroxine. At the moment I can go several days. I'm being pushed towards a diagnosis of depression by the doctor.how do you go about getting a private doctor for a diagnosis?

Loss of the outer third of the eyebrow is a standard thyroid sign.

Never, ever, accept that a blood test result is 'normal'. So often GPs will say this if the result comes back within the reference range. That's a lot different to being optimal.

You are entitled to a copy of your test results, complete with the reference ranges. That way you can see where you sit within the range and also what tests have been done.

If you have a strong family history of thyroid disease then this is likely to be an inherited auto immune condition, so you need to get your antibodies tested as well.

I'd say get a print out of your results OP, read up on hypothyroidism and go from there. The Health Unlocked forum is a good 'non-woo' one.

Thanks very much

Just remembered that many years ago I had a blood test in Germany, that I had never had in UK. It was called TRH test - Thyroid Releasing Hormone.
First you have blood taken, then injected with TRH, then after 30 minutes blood is taken again. The TSH in the last blood test should have risen from the first.
My result was abnormal, so an infection of the Thyroid was suspected.

Oh that's interesting , thanks

You're welcome

Definitely can yes. Mine was.

I have had that eyebrow hair loss thing too!

I'm due back to my GP tomorrow pm after my normal thyroid result. I have been cold (except when having menopausal hot flushes) even in this weather. As well as knackered, hair-loss and brain fag. I don't quite know what to ask/say to him though. Do I just ask for a print-out of results and then look up the results on the site linked on this thread or ask him if the results are on the low side of normal? Sorry if hijacking thread.

I would just keep reiterating if s/he says that your results are "normal" or "subclinical" that you are in fact experiencing x, y and z symptoms. Refuse to be fobbed off with anti-depressants which many some GPs seem to believe are the cure to hair loss, constant tiredness, cold and aches all over (along with all the other symptoms). Good luck!

thanks for that duchesse, I'll do that.

digred I got that test when I saw the private doctor.
anyone can get a private doctor just ask your doctor for a referral.

My mum had several tests with normal levels but had a lovely Dr who persisted. Weirdly it turned out that her pituary gland was overcompensating and therefore making the tsh levels appear normal. Not sure how that works but she does indeed have hypothyroidism and is now on levothyroxine. I have it too but worse! my Dr did one test and said she would normally test again but due the family history and because she could see I was symptomatic just by looking at me she put me straight on meds I would ask for your pituary gland to be tested

While I'm here: just got my levels back and I am tsh 25 and t4 7.5.. can anyone tell me what that means?

It means, in simple terms that you are under-medicated. On meds, your TSH should be around 1. Or possibly below and your FT4 should be towards the top of the reference range, so 18 or more.

How much levo are you on?

Ok thank you. My drs not explained any of this. shes just put me on 150mg as of today. I've been tested put up 50mg every 3 months so far. Will be tested again in September

Saw GP this aft. He said thyroid test showed levels were not at the low end of normal but pretty average. Ferritin and iron also. So wonder if some of the symptoms I'm having eg hair loss, fatigue, dry skin, are more menopause related. Am starting HRT.

I will see if I can a) tolerate HRT and then b) see if it helps my symptoms and then go from there.

Also check what 'normal' levels they are using. The thyroid uk website mentioned above should tell you that there are doctors who recommend a TSH isn't over 5 but new research that says actually if should be under 3. Personally, having been on thyroxine around 18 years I function much better when my TSH is 2 or under.

Same as freelance. I start to feel pants again when my TSH goes above 2.