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Thyroid Tests - need a list to ask my GP???

(30 Posts)
rockinhippy Fri 17-Aug-12 10:55:06

Just that really - I finally have my MRI scan results back & thankfully clear so I have an appointment in the morning to go & battle it out & I need to be very prepared - I have the thyroid UK check list to take in, which I score close to 100% on - but I know from previous requests for tests & endo referral this is still going to be a battle - even though thyroid trouble is rife in my familyhmm

I remember reading that some vit/mineral tests can indicate thyroid too, anyone know these ??

also what are the more indepth tests again - T4 ?? etc - previous basic tests have come back okay - but I believe I have the sort of thyroid where my body makes it, so TSH (?) is in my blood, but not using it properly - getting diagnosis has been very hard for all my family - years - decades - I did after a battle have the more indepth tests a few years back, which came back positive - retest - borderline - & then negative so no diagnosis

Also does anyone know what are the criteria for an endocrynolist(sp) refferral - have been told by one GP, no referral as I'm not symptomatichmm - M.E. Fibromyalgia & Chronic migraine diagnosishmm - next one said no because of test results.

Things are getting worse, numbness in hands etc now permanent, along with weekly migraine symptoms lasting days & more, so now I know for sure its not MS I want to fight for proper testing & treatment - but damned migraine making reading the net & making sense of it very difficult

any advice much apreciated

TIA

LottyA Fri 23-Nov-12 17:34:13

Hi Tidyjane,
The only way sometimes to get doctors to listen to you is to make a nuisance of yourself. Make several appointments (allowing fir the fact to the first two or three won't work) and take a lst of things you want to be checked for. If your doctor refuses to test you ask for a note to be put on your file that you have requested these tests. She will hate that as it presses their accountability buttons. Good luck. This is ridiculous that we have to jump through such hoops.

tidyjane Sat 17-Nov-12 17:31:54

I'm pissed off against doctors too, I have all the symptoms of Hyperthyroidism and I think I'm borderline but she completely dismissed it and categorically said there was nothing wrong with me, she kept me 5 minutes in her surgery.
Can anyone advise my results are: TSH level: 1.5mlU/L
Free T4: 11.3
They didn't check for Free T3 or Antibodies test for Graves or vitamin B12.
My vitamin D is 68.3 (normal range 75-375)
Ferritin 28 (norm 11-300 confused)
My sister has had hyperthyroidism, and my 2 cousins from my dad's side.

mercibucket Sat 17-Nov-12 09:08:33

I agree, lottie, and I think the b12 seems to be the same. Both affect women and make them 'tired and anxious' aka 'hypochondriacs' in the eyes of the medical profession.
Did you watch the 'holy miracle of the infalliable tsh' on youtube yet?

LottyA Sat 17-Nov-12 08:53:36

Thanks for that Mercibucket,
I had forgotten about vit d. Will give that a go. I think I have probably been hypothyroid for a long time but have only just come within the permitted band. That's a rubbish and scary place to be. I think I need to accept that now and get on with it. But the model used by GPs is a blunt instrument and leaves women under informed and anxious. I know depression is part of Hypothyroidism but I think that anyone left worrying by lack of information and lack of thyroid diagnosis due to the method gp's use is just as likely to cause it too.
It's a scandal really.

mercibucket Wed 14-Nov-12 23:09:42

Op, have you tried a private appointment with a GP recommended on thyroid uk?

mercibucket Wed 14-Nov-12 23:09:42

Op, have you tried a private appointment with a GP recommended on thyroid uk?

mercibucket Wed 14-Nov-12 23:07:45

Lotty - you need to get your b12 up. This is not something I know much about but if you go to the pernicious anaemia society online forum they have a lot of info about b12 levels alongside mcv (from your full blood count) and I think also another test for antibodies? That your GP can use to diagnose b12 deficiency. Otherwise you can take jarrow b12 supplements for example. I just bought 3 months worth for a fiver online. Apparently they need taking with a b complex so your folic acid doesn't go too low. As I said though, this is not something I know too much about

Op - did you also get your b12 tested?
Are you supplementing the vit d?

Op - that tsh looks a bit higher than usual, and the t4 a bit on the low-normal. If you are ttc, it needs to be under 2. Otherwise it might be hard to persuade a GP to treat, I'm sorry. Thyroid uk might be able to advise more on their forum on healthunlocked

digerd Wed 14-Nov-12 13:00:20

OP
Have seen your last post is dated 4th September?
Your receptionist should know to inform you that the numbers range in ( ) is the "normal range". Unless you have too high or too low according to these ranges, Drs will not refer you to an endocrine specialist.
In my opinion and from what I have researched, these ranges are not absolute for each individual. Your results show you are in the middle of accepted ranges, except your vitamin D, which you should be supplemented with.

LottyA Wed 14-Nov-12 12:21:36

I have has the same numbness in hands and feet and recently found out I had hypothyroidism. I have been on thyroxin for about 4 months but the numbness is still there. Does Thyroxin take a while to work? I got my gp to check my B12 and it's in "low normal" and so they won't treat me. It was 286 and when i looked into it this was considered to be very low. Has anyone else had this?
I am so anxious I could (and do) cry!

rockinhippy Tue 04-Sep-12 17:27:56

Don't go by the check list. It's a blunt tool. Insist upon the full blood panel. I am a registered psych nurse BTW and we always check for thyroid disease as it can mimic psychiatric conditions, exacerbate or trigger them

Thats great to know that some depts work that way mignonette I've managed to get referrals in the past in the hope of more thorough testing - I had high hopes for the M.E. clinic - no tests, not even a physical assessment, but they gave me a diagnosis of severe M.E. instead, which has made it even harder to be taken seriouslyhmm

& yes tb too true - if I could get the free prescription sign off I wouldn't waste my time & just take the natural desiccated thyroid supplement - I know several with the same DX as me who have had great results with it, but I just can't afford it when I have to pay for pain drugs, BP drugs etc - but best case senario would be the GPs actually taking it seriously & monitoring it too

Anyway I now hove results - I THINK the receptionist said "tell patient normal" but I've had a rough few weeks, so I'm not really on the ball & have had other tests done at the same time come back as "need to see GP", so I did get a bit confusedblush

Print outs I have here read...

Serum free T4 level 16.2pmol/L (12-22)
Serum TSH level 2.50 mu/L 90.3 - 4.2)
Thyroid AB test is 16.8 & that was a definite tell patient normal

Vit D is I think she said id abnormal at 42nmol/L (50-120)

& another test I don't have a print out of - urea something or other, which I think is kidney related came back as abnormal - so she is finally taking that seriously at least - I hope - I have damage to my kidneys already & a BP drug they have me on reads in the blurb that patients should be monitored - I haven't been & I've recently taken myself off it as I realised that might be the cause of the horrendous cramps - seems it is as definite improvement, though not cured

sorry if thats a bit garbled I've had DD ill & other problems myself, so flare from hell ATM, so very foggy headed blush]

How do the thyroid results sound please?? I've googled, but not clear headed enough to make any sense of it

TIA

tb Sun 26-Aug-12 22:19:20

The main thyroid support orgs admit that at least 25% of the people sampled to construct the 'normal' ranges are hypothyroid and are not receiving treatment.

It's just a complete load of crap, isn't it?

My gp even told me that she didn't think I was entitled to free prescriptions but 'would give me the form, just in case'. Yes, you are, once you are on thyroxin. I've since wondered if it hits the practice budget......

mignonette Thu 23-Aug-12 20:16:06

I am underactive but I had an idiosyncratic set of symptoms- my basal temp was higher, I was + for Hertoghes and Woltmans, my menstruation and ovulation were normal (light and regular), I had the typical cheek flush, rough skin and deteriorating hair quality yet my pulse was regular and at a normal rate.

Don't go by the check list. It's a blunt tool. Insist upon the full blood panel. I am a registered psych nurse BTW and we always check for thyroid disease as it can mimic psychiatric conditions, exacerbate or trigger them.

rockinhippy Tue 21-Aug-12 23:46:20

keep pestering and maybe they'll do what you want them to, if only to get rid of you

Hahahagrin maybe THATS the key - lol - though taking DH to my own next appointment to insist on thyroid referral - the difference today when he was there was amazing

DoingItForMyself Tue 21-Aug-12 23:43:11

Its awful that you need to be so strong exactly when you don't have it in you because you feel so crap! Sounds like you & DD are finally being taken seriously though, stick with it, keep pestering and maybe they'll do what you want them to, if only to get rid of you!

rockinhippy Tue 21-Aug-12 23:33:01

Please excuse me I'm wiped out & also dealing with a kidney infection so not best with words, but I'll try & respond to questions as clearly as I can, but excuse any muddlesblush

but if they never take the time to listen and put them all together with your family history, then what do they expect

DoingIt after seeing her today with my DD that is so accurate its just not true - I've been trying to get her to listen to DDs symptoms for years now - she has in part, but only as individual symptoms, not as signs of one problem, as I've always felt it to be - I took DH with me to todays appointment, back up & witness if she refused Rheumatology referral DD needs - She actually listened today & not only that, it turns out she knows the suspected condition (Hypermobility Syndrome) well - AS SHE HAS IT IN A MILDER FORM HERSELF shock - why the hell could she not string the symptoms together & work it out herselfconfused let alone shoot me down in flames everytime I've tried to get DD a referral to rheumy - gastro referral for DDs IBS, no problem, but Rheumy was my projecting my own health problems onto DD & all the aches & pains where growing painsangry - once she listened & checked - I am right, DD IS VERY Hypermobile & now gets the referral I've been asking for for a few years - gobsmacking that it took ME, with the coincidental help of a friend on Faceache (awareness raising video) to diagnose, when out of all the GPs who should have known, it was herconfused - rant overblush grin

@ RockinD

Do you have Hertoghe's sign? Has the outer third of your eyebrows disappeared YES - definitely - I've even taken in an old photo to prove the difference, but again not taken seriously

Do you have Woltman's sign? Do you have very little ankle reflex, or are they very slow - not sure, but I'd say most likely yes, on walking my feet, left in particular hardly bend anymore, the more I walk, the worse it gets - I've raised this with her loads of times, linked to calf problems & my calves been bigger than my size IYSWIM but I always leave with it ignored & my confused & realising on getting out she's done it again - I did see a private Thyroid Dr after reading his books - blank on his name - he's a controversial figure, but he did an achilles reflex test that tested positive as hypothyroid - unfortunately losing the little DLA I recieved & following appeal - meant I couldn't afford to follow it through with treatment

Is your basal body temperature generally below 36.5 C

Yes always, sometimes even 35.5 is normal for me, it has made getting diagnosis for frequent infections (Sinus mainly, but kidneys at times) very difficult with GPs - ENT specialist had to intervene & told GP to listen to my symptoms, not rely on my tempereture - though that was put down to chronic infections lowering my temperature - IYSWIM

Also weight gain not taken seriously as I'm not medically overweight - but I was always underweight, so I'm a good 25-30% heavier than I was - even after giving birth I snapped back to size 6/8 the same day - when I've tried to push this, the previous GP who was even worse(she left thank god), offered my councelling for "issues around food" confused - I love food & have no problem with the extra curves, but I KNOW I've gained a lot of weight for ME & that can't be good & doesn't help my mobility problems - My Brother is HypERthyroid - Mum, Grandmother & aunt & probably uncle all HyPOthyroid

I getting quite angry now writing this - thats the problem with feeling so damned il, the last thing you need to do id fight doctors to be taken seriouslyhmm

@*Merci *^Can you change GP? Often 'fresh eyes' are better when you've been ill for a while^ - I would love to & will look into it again, but I'm certain its not going to happen - surgeries here are all over subscribed & moving here even heaviliy pregnant with a list of possible complications meant I had to write to PCT to be allocated a GP - I've been told its got worse since then, but nothing to lose by trying i suppose

in your shoes I would do my own tests, there are online discount codes on the main thyroid websites, and get the full thyroid panel option to include t3 and antibodies. Sometimes the tests can be done by yourself using a fingerprick bloodtest kit Thanks for that info, I think I might end up having to do that - but do they (GPs) take those results seriously ??

You could also get your cholesterol checked - high bad cholesterol is another possible indicator of thyroid problems

Oh drat, that was the other test I was trying to think of - its shown up high before on an A&E trip - healthy eater & not supposedly over weight, so A&E Dr put it down to the hospital canteen foodshock - thats the only time I've had it done, which in itself is ridiculoushmm

& Thanks lizcat - interesting list of tests & yes, you are brave smile - ironically perniceous anemia is rife on the other side of my family - but mine has supposedly come back okay - but will be asking for copies of old tests

I had blood tests today, they couldn't get any ou of me confused took 3 goes, but did in the end, so its wait & see now - though after reading your replies & my writing mine I want a referral to a Endocrinologist whatever the results

thanks again for all your help - especially you RockinD - it was your reply to my post back in April asking about my health being so good when in a hot dry climate, that set me off trying to get answers again - weird how the GP is happy to send me to a Nurologist, who organises an MRI, but not a Thyroid specialistconfused

Thank you all smile

mercibucket Tue 21-Aug-12 21:39:36

Can you change GP? Often 'fresh eyes' are better when you've been ill for a while
In your shoes I would do my own tests, there are online discount codes on the main thyroid websites, and get the full thyroid panel option to include t3 and antibodies. Sometimes the tests can be done by yourself using a fingerprick bloodtest kit
You could also get your cholesterol checked - high bad cholesterol is another possible indicator of thyroid problems
Good luck smile

Lizcat Tue 21-Aug-12 21:25:57

I have multiple and complex immune mediated disease that gives all the symptoms you list my bloods check list is ESR, ANA, rheumatoid factor, anti Ro, anti Lo, anti thyroid, B12, free folate and red cell folate.
I self inject my B12 which really is the best route as you have total control of when you get your next jab - though my GP reckons I am a braver woman than her to do this - I suggested it and she said in reality was best solution. There are some very clued up GPs you do have to find the right one who understands the immune mediated iceberg effect.

RockinD Tue 21-Aug-12 19:30:55

Yes, there's a lot of cross over in symptoms between the various conditions, but for someone with an underactive thyroid there are signs, which confirm a diagnosis.

Do you have Hertoghe's sign? Has the outer third of your eyebrows disappeared?
Do you have Woltman's sign? Do you have very little ankle reflex, or are they very slow?
Is your basal body temperature generally below 36.5 C?

And that's only some of them.

D

DoingItForMyself Tue 21-Aug-12 15:41:25

That's the problem, all the symptoms of thyroid probs/ME/FM are so vague and insidious that you end up sounding like a hypochondriac, but if they never take the time to listen and put them all together with your family history, then what do they expect?!

Good luck with it all.

rockinhippy Tue 21-Aug-12 15:35:14

I know, its ridiculous & then theres the "waste basket DX of FM & ME to contend with too - EVERYTHING can be hung on thosehmm

I did think she was going to be better - she went off on Mat leave & her cover was brilliant - listened for a change & tested for, diagnosed & treat a stomach infection that I had never even heard of, let alone tested forhmm - made a big difference & I noticed a change inmy GPs attitude when she came back & was told that, but its slipping back to her old ways again hmm - I have to remind her of everything, BP checks, I don't even get regular diabetes checks without a fight & BOTH my parents & all the women on DMs side & half on DFs side are diabetic too - I swear as I don't live near to my family, she thinks I make it all upangry

May have found the key to better treatment though - I had an appointment today with DD - again fighting for years to get her problems properly diagnosed & help - ended up diagnosing it myself (Hypermobility Syndrome) hmm & then had it confirmed by a physio DD was under - I asked for a Rheumy appointment several times & have been turned down - today I took DH with me to DDs appointment & GOT the referral without any fight at all & she agrees DD has this - its taken YEARSangry - even more annoying as it turns out this GP is also Hypermobilehmm -

so having a witness & back up helped - but bloody annoying as a grown woman, very capable of speaking up for myself - more so than DHgrin I have to take him to hold my hand in order to be taken seriously

& thanks for all the tips over tests - I am very determined to get to the bottom of this, I've never believed I have M.E. & FM I've had since small - but it didn't stop me, so wil be getting all the test results & looking into them thoroughly

DoingItForMyself Mon 20-Aug-12 19:44:48

Bloody doctors are crap! What exactly are they paid so much to do?!

Ridiculous that you have thyroid problems in your family, loads of symptoms and they still dismiss your concerns, they should be bending over backwards to make sure yours is functioning properly.

See what the other tests say and even if they come back 'borderline' (that's doctor-speak for "you have diagnosed your own problem, so I won't admit that its very serious") then ask to be referred to a specialist.

Also get the numbers on the thyroid test from December and make sure you're not 'borderline' for that too. It makes a big difference to how I feel if I'm not at the upper end of the 'normal' range.

You can get B12 sub-lingual drops or tablets that give you a massive dose, ensuring that at least some of it gets absorbed (you can't OD on vit B12 so don't worry!) so may be worth trying those once all the tests are complete. Can't hurt.

Update us when you hear about the RT3 - I've read about it but never had the chops to ask for the test - well done!

rockinhippy Mon 20-Aug-12 14:53:48

Just a quick update

I saw my GP & usual came away feeling fobbed off & not listened toohmm, she refused a lot of the tests as according to her I've had them recently - December last year is recentlyhmm] & YEP, she's never heard of the "reverse T3 - she did after my getting a bit stroppy agree to the Thyroid Antibody tests - when made to look closer she agreed I have NEVER had thesehmm

my insistence that everything is getting worse & I needed help, parathesia in my hands now permanent, perpetual charlies horse cramps in my calves making walking a problem etc etc got "well you do have a DX of FM & M.E. those are all symptoms of that" - No they are not angry - nor is the frequent swelling in my face & legs I took photos of in with me - she didn't even look at, nor did she pressure check for oedema, despite my askingangry - she didn't even hear me out on an arm injury from a fall this week which has left my keep dropping things as I suddenly lose power in itangry

so antibody tests & after pushing, Lupus & kidney function & a couple of the Vit/min tests too - so I suppose its wait & see after the blood results & fingers crossed something shows up that will get me a referral to someone who DOES listen

DoingItForMyself Fri 17-Aug-12 23:46:10

I self-diagnosed B12 deficiency from numb hands/feet/face so make sure they check that too. I have underactive thyroid and it took 4 appointments with GP for them to even test it, kept trying to give me ADs instead. It was only when my GP was away a locum agreed to test my thyroid and called me in within an hour of getting the results to start treatment as it was so low he said "I think you must have been feeling very poorly indeed" - I just burst into tears!

rockinhippy Fri 17-Aug-12 23:32:12

Thank you, thats Brilliant, I now feel far better equipped to argue it out with GP smile

Ironically my Nana ended up with a huge goitre ( is that the right term? foggy headconfused - years of been very ill & no real diagnosis until she had to have her thyroid removed in an emergency op - that was a lot of years ago, but I sometimes wonder if things have improved at all with getting diagnosis - I now know I was classic hyperthyroid until I had DD - never diagnosed other than they thought I had some sort of hormone imbalance but couldn't pin point it - moving to a new area when DD didn't help as Doctors here have been worse.

Rockin D, I might yet end up going that route - private tests - but want to try & save the money & give the NHS a kick in the right direction - wish me luck

& thanks again smile

RockinD Fri 17-Aug-12 19:35:17

topsi has listed the tests you need. The antibodies are called TPO and TgAB and it's vitamin B12 you want, and folate. You may find that even if your GP asks for FT4 and FT3, you may not get them if your TSH is within the reference range. NHS labs tend to over-ride clinical judgment these days to save money.

Again as topsi says, when the results come through ask your doc for a copy of the results and (v important) the reference ranges. They can't withhold this because under the Data Protection Act it counts as your data.

Unmedicated (and healthy) your TSH would be around 1 and your FT4 would be in the top third of the range.

Once you've got your results post them here or on a thyroid forum and you will get lots of advice.

I finished up getting a full thyroid panel done privately and that nudged the NHS into treating me.

D

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