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Original poster

How accurate are thyroid tests? At wits end.

43 replies

Turvytopsy · 01/12/2014 00:07

Sorry for self indulgent post but my health is really getting me down.
I have been diagnosed with depression for over a decade but meds really don't seem to help me. I have started to really look into helping myself get better as gp seems baffled by my symptoms but they scream thyroid to me. The thing is my doctor says that because I'm a normal weight (top end of healthy bmi) it can't be my thyroid. I had blood tests and thyroid function came back normal.
The thing is I have recently been doing the my fitness pal app and I only consume 800 to 900 calories a day! Surely I should have a low bmi? I do no exercise at all as with the depression and tiredness it's all I can do to drag myself out of bed for a few hours. It is affecting my dc's standard of life and I just want to get well!
My other symptoms are:-

Tiredness
Always feel cold
Constipation and bloating
Confusing words and mind fuzzy
Aching muscles and no strength
Dry skin
Numbness in fingers
Heavy periods
Feeling of pressure on my windpipe
Puffy face around nose

I also have a frozen shoulder at the moment that is being treated with steroid injections. Google says it can be associated with thyroid.

My son is being tested for gluten intolerance at the moment which can also be genetic and related to the thyroid (according to Google againBlush)

Am I way off the mark here or is there a chance the blood tests didn't give an accurate result?

Please tell me your experiences or if it sounds like something else.

OP posts:
radiobedhead · 01/12/2014 00:11

There's a wide range of 'normal' and what's right for one might not be right for another

Ask to be referred to an endo.

Original poster
Turvytopsy · 01/12/2014 00:12

Also occasional dizziness and terrible insomnia / broken sleep.
I just don't know if it is the depression causing the symptoms or something else causing the depression.

OP posts:
Original poster
Turvytopsy · 01/12/2014 00:13

Thanks radio can I ask for a referral even though bloods said normal?

OP posts:
radiobedhead · 01/12/2014 00:19

Get the figures and have a look at them, then see how 'normal' they are. There are other hormonal conditions. And then if it's not hormones, you can at least explore other options.

FelixTitling · 01/12/2014 00:20

A friend of mine was told by her gp that her thyroid was normal, but she got hold of the results and checked them out herself (she's a health professional) and it turned they actually weren't ok.

Ask for your results and contact Thyroid UK for help with interpretation.

radiobedhead · 01/12/2014 00:20

It could for example be Cushing's.

ErrolTheDragon · 01/12/2014 00:30

The thing is my doctor says that because I'm a normal weight (top end of healthy bmi) it can't be my thyroid.

I'm not sure if my DH was overweight when he got his underactive thyroid diagnosed. And you've been dieting hard (actually, possibly too hard if you're unwell TBH ... you might want to review that, maybe try eating normally ie TDEE alternate days or something)

Do you know what thyroid tests you had done and what the results were?

AlpacaMyBags · 01/12/2014 00:31

This reply has been deleted

Message withdrawn at poster's request.

Original poster
Turvytopsy · 01/12/2014 00:40

Thank you so much for the replies.

errol I'm not dieting I just started doing my fitness pal as a way of keeping a food diary when gp suggested ds could be gluten intolerant. I didn't realise how few calories I actually consume until then. And this is what got me wondering about what my gp said about my weight.

I have no idea what sort of blood tests they were or what the figures were. Gp just said they were normal. I will make another appointment and ask.

OP posts:
123rd · 01/12/2014 00:50

Turvy, you sound very similar to me. My Gp diagnosed over active thyroid but to me I have the opposite symptoms. I can't remember the exact numbers but something along the lines of" a heathy result would be 5, you have tested at 5.5. You have an over active thyroid. " I was put on levothyrone (sp??) but took myself off as I put on weight,and none of the symptoms eased at all. I want to see my results. Also, I think I read somewhere there are numerous tests for the thyroid. So maybe I/we need a different test?

Original poster
Turvytopsy · 01/12/2014 00:56

123 it certainly sounds that way. I had no idea that there was more than one test. I just accepted it couldn't be thyroid but now I know I'm not eating enough I will definitely go back to gp and see what the figures actually were. I hope you get sorted and feel better soon.

OP posts:
123rd · 01/12/2014 01:01

Have they looked at your symptoms separately? I first started going about my effing terrible periods...put on transameic acid and mefanatic Acid -again sp??? Which sometimes helps. But the cold, the tiredness, the being lightheaded. Etc, I've only just started putting together. I did try to speak to my Gp, but she is on mat leave, and the others at my surgery are useless. Hmm

Original poster
Turvytopsy · 01/12/2014 01:08

Yes I'm not one for rushing to the doctor with every little thing so I probably mentioned one or two symptoms each visit. But I suppose they were easy to put down to the depression. There are some I have never mentioned to her. This is the first time I have ever put them all down together. I have anxiety so not always easy to remember everything when I'm in front of the gp so think I will write it all down.

OP posts:
Original poster
Turvytopsy · 01/12/2014 09:37

Got an appointment for tomorrow morning. Thanks very much for all the kind relies and information.

OP posts:
mawinter · 01/12/2014 09:49

You have a lot of symptoms there, which could actually be suggestive of something else entirely.

For example:

Tiredness, Constipation and bloating, Feeling of pressure on my windpipe - suggestive of digestive issues

Tiredness, Always feel cold, Dry Skin, Numbness in fingers - suggestive of blood clotting disorders.

LoonvanBoon · 01/12/2014 09:59

There could be all sorts of things going on health-wise. But re. the thyroid specifically, you need to know which tests were done, & what the actual results were. The British Thyroid Foundation website (& probably loads of other sites) will give you info. as to what is / isn't normal.

When I was first diagnosed with hypothyroidism my actual thryoxine levels were at the bottom of the normal range, but still technically okay. But my TSH (thyroid stimulating hormone) levels were sky-high - way, way above the normal range - indicating that my pituitary gland was working overtime trying to get my thyroid to function properly.

Many people with underactive thyroids need to get to a stage where their thyroxine levels are at the high end & their TSH levels very low to feel okay. I certainly did, & luckily had a clued-up GP who adjusted my levels of synthetic thyroxine & gave me repeated blood tests until I got to that stage.

lurkingaround · 01/12/2014 10:09

If you are only eating 800-900 calories a day, then you cannot be eating enough. You cannot be getting enough vitamins and minerals, nevermind protein etc. It's just not enough. Not eating enough might cause some of your symptoms, as might being low in certain viatmins and minerals. And your metabolism will by now have adjusted to this low calorie intake, making everythng slower and sluggish. Would you revise your diet?

With thyroid tests there is a wide range of normal as your GP says, but if it's normal, it's generally normal. Up your (healthy) calorie intake.

Original poster
Turvytopsy · 01/12/2014 11:20

lurkingaround I will certainly be improving my diet I honestly had no idea I had got this bad. I agree that my diet cannot possibly be helping the way I feel. Looking at the nutrition info on the app, I must be lacking in lots of things. I did used to eat much more years ago but I just can't be bothered anymore. I'm not very good at doing things for myself, even though I cook for the dc's I'm just not very fussed about eating. The symptoms I have were present even when I was eating well. I will be enormous if I double my calorie intake though. But I intend to do anything it takes to get well.

Thanks once again to you all for taking the time to reply.

OP posts:
RockinD · 01/12/2014 12:20

It is very common for thyroid issues to be misdiagnosed as depression and the fact that meds don’t seem to help is a red flag for this, even before you start to list classic symptoms of hypothyroidism.

It is also disappointingly common for GPs to have no idea at all how to interpret thyroid function tests.

You’ve done your research and have picked up a couple of things that can be connected, so you need to get to the bottom of this.

The best thing you can do re thyroid is to get a copy of your blood test results, with the reference ranges, and post them on the ThyroidUK forum on www.healthunlocked.com. You’ll get lots of good advice there and they’ll tell you soon enough whether it does look as if you have, or are developing, a thyroid problem.

Come back and let us know how you get on.

123rd · 01/12/2014 22:20

Topsy, do let us know how you get on tomorrow ...you may spur me on to trying with one of other Gps at my surgery.

123rd · 01/12/2014 22:29

www.sunfood.com/blog/thyroid-health/top-superfoods-for-thyroid-health/

Am on my phone so not sure this link will work, but some interesting reading.....

Original poster
Turvytopsy · 02/12/2014 10:30

Just back from GP. Thanks again for the replies, you all really gave me confidence to go back.
The result the doctor had was that my TSH level was 2.7. She said upto 5 can be ok but if they are treating for hypothyroidism they like to keep it under 2.
I have to go back tomorrow for more blood tests and this time they will test the T3 and T4 levels too.

123 definitely go back and discuss this with another GP. It's an awful way to feel and you need answers. I'm sure my GP thinks Im a pita but so glad I went back. She is lovely though. Just felt I was hassling her as also had appointment with ds last night also for ongoing mystery issues. She was great with him too.

Thanks again everyone for the support and the great links.

OP posts:
LoonvanBoon · 02/12/2014 10:55

It used to be said that under 5 was okay, Turvy, but it's now generally accepted that it should be under 3 - & yes, lower still if you're being treated for hypothyroidism.

Mine has been well under 1 for the past few years, & I feel a lot better for it. Having said that, it was up at 12 or something ridiculous when I was diagnosed! You definitely need the other tests, too, though, & it's great that they're doing T3 & T4.

Original poster
Turvytopsy · 02/12/2014 13:11

Thanks loon at least I will be able to rule it out if the T3 and T4 tests come back ok.

OP posts:
123rd · 02/12/2014 16:45

Oh well done turvy. I'm going to phone for an apt-but it won't be as quick as yours!

It's good to know you may start to get to the bottom of things. Keep us posted

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