thyroid - I don't know what to do now?

[katiewins22]

Hello - I was posting few months ago a lot as felt had symptoms hypothyroid. I was tested end of last year and GP said results suggested hypothyroid but not definite.

Was then retested this year and TSH was 2.1. Can't remember other results and didn't write it down. GP said this was perfectly ok and definitely not hypothyroid. I then took approach that maybe I was imagining all symptoms and have tried to be more active and cut out certain unhealthy snacks and stuff.

I don't feel any better. I am exhausted. My weight is going upwards. I have vrey heavy periods. I think I lose a lot of hair as our shower is always clogged up. I feel as though one side of my neck (towards the base) is bigger than other side and I have a persistent tickly cough. My hands and feet are dry. I have coarse facial hair. I wake a lot in the night and seem to have really oldd dreams.

GP kept saying that as all bloods ok (did iron, vit b, cholesterol and tested diabetes, renal and liver function too) that perhaps I was depressed or suffering from low mood.

I am definitely not depressed. I am irritable at times because I work a lot of hours and also try to run home and family so feel a bit more "shouty" than normal because I am tired. I experienced mild depression about 20 years ago and I know I am not depressed. I enjoy the company of others and my own company. I look forward to things. I want to get up each morning and I do - but I feel as though I haven;t had a good night sleep.

The GP basically said "go away and get some fresh air - if you feel like this in 6 months we could look at CBT or chronic fatigue support group".

I think I show symptoms of thyroid but if bloods are ok then where do I go from here? My sister is now hypothyroid - recently diagnosed. she only went because i was banging onabout it and she recognised some of the symptoms and she got diagnosis on 1st blood tests.

sorry for such a long posting. I haven't been on for a while as have been trying to be positive and take GP advice but I really feel as though I am not improving.

Will wait for some wise words. Katie (who should be in bed)

You have my sympathy, it takes ages to get a proper diagnosis of hypothyroidism. I had three blood tests all showing that my thyroid was underactive but the GP insisted that it wasn't underactive enough so refused to give me the medication I needed. I ended up changing GPs, and instantly felt better when I was prescribed thyroxine. I don't know why they mess around like this, when it's such as simple test with clear guidelines, perhaps it's because sufferers get free prescriptions once diagnosed?
I hope you get a proper diagnosis very soon.

Ask to be reminded what the result was in Dec. some people have erratic thyroids so get symptoms but their levels go up and down

Go get a second opinion, because whether it's hypothyroid or not, you need someone who takes this seriously. 'Wait six months' is not a satisfactory answer.

Have you had results with a higher TSH?

I don't know if all those symptoms are hypothyroid ones or not (heavy periods could be a few things?) But come back in 6 months sounds like terrible advice! Is he/she the only GP in the practice? It does sound like you were borderline when the first bloods were taken, and if you're also experiencing symptoms I would have thought that would point to u-a thyroid. Took me a long time to get a diagnosis, during which time I was convinced (as told this) that I had PND instead.

Does your sister know what caused her u-a thyroid? Is it hashimoto's? 'Cuz that's genetic.

Is quite common for underactive thyroids to run in families (says my GP). As well as me, my dm and her two sisters had it. Common to come on after a pg as well.

Never accept being told that bloods are 'normal'. Within range doesn't mean 'normal' and 'normal' is not the same as 'optimal'.

What you do now is get hold of the surgery and ask for a print out of your results, together with the reference ranges and if you can get them, post 'em on here and the thyroidians will have a look at them for you. Your results are your data and you are entitled to them. End of.

You have a TSH that is perhaps a tad high, but that's not a lot of use without an FT4 and preferably an FT3 as well. Also, you need to get your antibodies tested to see if there is anything auto-immune going on.

While you're at it, you could do with B12 and folate, Vitamin D and an iron panel.

Then and only then this dozy GP might have the info he really needs to make a diagnosis.

D

"Never accept being told that bloods are 'normal'. Within range doesn't mean 'normal' and 'normal' is not the same as 'optimal'."

Very, very well put :)

I might get that tattooed on my GP's head :o

I'm interested in your neck - do you have a lump? An enlarged gland? Have you had a doctor palpate it?

You might have a goitre, which can be all kinds of things (most not worrying) that need to be checked out.

thank you for all the replies. i knew i would get some support here.

i will get the info from the doctors. Is the receptionist able to just give me the printout? they seem to act as though they are part of some secret service so if i go along are they likely to say i need see doctor for that - i have already seen doctor of course and talked about it.

I wish gp would do a trial of meds based on symptoms rather than waiting for bloods. I know a few people have said had to be tested and re-tested and then eventually diagnosed as hypothyroidism. That suggests to me that they were right all along based on knowing their own body and symptoms.

My neck has not been touched. I have seen 3 gps over this and none have been near my neck. Last time I said I had a feeling that it was swollen on one side (at the lower region of neck) and the GP just noddded and said that somettimes people can convince themselves of swellings ????? I don't know why I didnt insist on GP examining but I felt as though I had gone in with a list of symptoms and it was apparent that GP was looking at me as if I was depressed. Repeatedly asked me "how is your mood". Does anybody have swollen neck - can you describe how it is. I now don't know if my neck swollen or just fat

I am going to go back and see GP too and basically ask what they think should be done about my symtoms. maybe I should be allergy tested - do I get that through NHS or do I have to go privately somewhere. I have hardly needed to go to GPs through adult life so not sure about the system.

thank you again for all suggestions and advice. Kate.

My GP def felt my neck when I came in with symptoms. (Though I didn't report a swelling).
If your gp's initial response to you having a symptom is to asssume you've 'convinced yourself' of it, I really wouldn't have any faith in him. Oh and if you're depressed your mood will be awful, as it will also be if you're struggling with an undiagnosed medical condition.

You need to see a better GP.

Not feeling the neck of a woman who comes in complanning of hypothyroid symptoms and a swollen neck is just shite.

Is there anyone else at your surgery who might be more interested in treating you than fobbing you off?

IME women GPs are often better.

The lump I had was just above my collar bone and very easy to feel and clearly defined. It was just on one side. But that was just me.

If you want to be treated for symptoms and not just numbers you probably need to fight for a referral to a consultant. For thyroid problems that would be an endocrinologist.

I would also fight to see an endocrinologist, who will take this seriously. Maybe it's not your thyroid, but it would be nice to cross an obvious cause of your symptoms off the list.

And yes, the doc should def be feeling your neck! Mine did and found a swelling I hadn't noticed. It took me precisely 3 weeks between seeing the GP and being on levothyroxene. I didn't even know I had symptoms (she checked for thyroid swelling as a matter of course, and three blood tests later we had confirmation.)

Find another doctor.

oh cheers everyone - your messsages have really given me the boost to continue to pursue either a diagnosis for thyroid or to reinforce to gp that i need to know WHY i feel so shattered.

I am definitely not depressed. My definition to the GP who kept talking abou "my mood" was that if i was depressed i wouldnt want to do anything but my problem is that i want to do EVERYTHING and I am managing to do most things but I am doing them at a slower pace and I constantly feel tired. I am able to laugh, eat, sleep and I really don't think i could be doing all that if depressed. The only issue with sleep I have is that when I wake I feel exhausted still and I keep having teh strangest of dreams. The other night I was at a party with WILL I AM and I think David Cameron was there too - now that is a strange dream

One more question is about Hashimotos? Would I be right in thinking that Hashimotos might not show up on a standard TSH test? My neck is definitely swollen above collarbone on one side. I lean my head back as suggeted on a thyroid website and I can feel the difference. Is it possible that my bloods would be ok if hashimotos. When people ask about getting auto immune disorders tested - what do they mean? Thanks again - Kate. (off to bed to have anotherparty with WILL I AM but definitely not inviting David Cameron tonight - might ask David Beckham instead . night. K.

You'll get a lot farther with a good GP and/or endocrinologist than you will trying to self-diagnose via google. If it's Hashimoto's there will be antibodies that a blood test will pick up (IF your GP orders a test for antibodies - ya can't find what you don't look for). Hashimotos is an auto-immune disease, as is, say, lupus. But really don't go off and Google what it might be - you'll just freak yourself out!

It all comes back to the fact that you need a doctor to take this seriously, order the right tests, and get you some answers. Even if the answer is, your thyroid is fine and we need to look elsewhere.

Oh, and you don't want a GP to just prescribe thyroid meds without blood tests saying you need it and how much. That would just make you hyperthyroid and that's awful too!

thanks for comments .
quiplite - when you say hashimotos will be picked up by a test for antibodies - is that a different test to thhe TSH, T3, T4 - which they already did.

I know what you are sayingabout self-diagnosing via google. it is easy to end up with extra symptoms just by reading about them. i have really stuck to NHS, BUPA and thyroid UK (?) - that might be wrong name but it appears to be an informative site rather than a scaremongering site. IYKWIM.

I am happy with any diagnosis really - as long is it helps these issues.

Are you hypothyroid? Or are you a medic? K.

The antibodies test should really be standard as part of a thyroid screen, but often you have to ask for it specifically. I think it's TPO and PgAB antibodies (but am open to correction).

It is possible to have reasonable bloods with TSH within range, and also to have large numbers of active antibodies.

Can't really argue with the principle of what quip says.

You need to take control of this and start looking for answers.My experience would suggest that the NHS is unlikely to offer answers to you.

D

tjhnaks ROckinD - i remember you commenting when i last asked about this a few months ago.

keeping this short. I just typed a long message and then mumsnet went offline and it was all lost. I am getting this done quick in case happens again.

GP definitely didnt test antibodies. I am really miffed with myself that I didnt insist on examination of neck. I think there is a swelling but I think each time I go I get sidetracked into listing all my symptoms and the GP then starts asking the same old questions - are you experiencing stress? Are you overworking? How is your mood? Do you feel down? I then spend rest of consultaion saying - yes i am busy, yes i am as stressed as most parents - trying to juggle stuff - but I am not depressed. Will go back and demand the GP has a feel of my neck and test antibiotics. will update once done. Thanks and goodnight. K.

clearly I am not going to demand my GP tests antibiotics - i meant antibodies. I haven't put my glasses on so can't see keyboard properly.