Not hypothyroid...

[Heyanonynonymous]

Hello, I posted a couple weeks ago about whether my symptoms could be hypothyroid symptoms, and some wonderfully helpful people said they could be and pointed me in the direction of the long list of symptoms on the thyroid UK website and I ticked so many of the boxes I just couldn't believe it, so I went to my GP and asked for tests.

Well.. Apparently my thyroid function is fine (TSH 3.49mIU/L, FT4 14.7pmol/L)...

But I'm still symptomatic.  Basically the symptoms causing me trouble are fatigue and difficulty losing weight... These could be due to myriad things, but the symptoms that pointed me in the direction of the thyroid were a low resting heart rate (low to mid 50s and I'm definitely no athlete!) and a low BBT (pre-ovulatory oral temps ranging from 35.6 to 35.9 degrees taken with two different thermometers to check accuracy).  I know of no other reasons for these two seemingly random symptoms, which on their own don't cause me any trouble (aside from maybe the causing dizziness).. Is it possible that I just have a ridiculously healthy heart for someone with a BMI of 29 whose idea of exercise is a 5 mile walk with the dog and run a little colder than everyone else?

[HarryE]

That TSH is not fine. Sorry, but it isn't

[HarryE]

thyroiduk.org.uk/tuk/testin...

[Marz]

They didn't test the FT3 or the thyroid anti-bodies - so it was hardly an appropriate check to see how your thyroid was working.

Also you need - B12 - Ferritin - Folate - Iron - Vit\D tested too.  Report back with the results AND the ranges so people can advise you and help you on your road to wellness.

[Heyanonynonymous]

Can my GP refuse to do the additional tests?  When the results came in they told me no further tests were needed as everything was fine and in fact got a bit tetchy with me when I even dared to ask for the exact results.  In addition to the TSH and FT4 they did check ferritin, which was 63.6, well above the low end of the range 20-300.  They also checked liver function, renal profile, plasma glucose, and a full blood count.  These were the tests they suggested when I listed off my symptoms.  

So I need to go back and specify FT3, thyroid antibodies, B12, folate, and vitamin D tests?  Anything else?  How much does it cost to do them privately as I'm feeling it's a bit of a struggle dealing with my GP surgery as they're making me feel like I'm wasting their time as I'm obviously not ill, I'm just tired and fat, or at least that's how they're making me feel.

[galathea in reply to Heyanonynonymous]

Check out private testing here,  you probable looking at a couple of hundred quid to get  proper testing......  thyroiduk.org.uk/tuk/testin...

Nothing ok about  a tsh of over 3 and ferritin is on the low side....  You need it over 70 to even keep your hair.....

Xx g

[HarryE in reply to Heyanonynonymous]

They likely will refuse. The whole system is a farce.

My TSH never got above 4 & I was off work for 4 months & so unwell I could barely walk. I have had to get all my own testing & my own medication.

[SlowDragon Administrator in reply to Heyanonynonymous]

Blue Horizon - thyroid plus 11 test - will cost £129 

Will give the full range of blood tests that need checking 

[Ruthi]

By the time my TSH was that high I was sleeping 13 hours a day, gaining weight and losing my relationship!

[Heyanonynonymous]

Oh I feel like I could cry, other people felt like this with 'satisfactory' TSH results!

Right, I am going to request an actual appointment with my GP instead of the crap phone appt I had before.  I will take info from thyroid UK and and request those extra tests.  I will list off the dozens of symptoms I have, I'll show her my BBT chart and my RHR history on the HR monitor I wear 24 hours a day and I WILL get more tests to see if anything can make me feel better.

Ruthi - I couldn't possibly sleep 13 hours a day with a rampaging toddler in the house, but I sleep 8-9 hours a night and spend the whole day yawning and feeling like I'm about to keel over.  I feel like I'm being a terrible mum because I just don't have the energy to get up and go out to DO things with my little girl

[LindaC in reply to Heyanonynonymous]

This just passed my way and it was like reading my own tale. My TSH only ever reached 3.8, my temps have been as low as 34.5 C in summer, couldn't lose weight no matter what I did (and I'd never been overweight + I had an exemplary diet and exercised in the best ways, resistance, Pilates and HIIT): I was so fatigued (for decades but then it became totally debilitating) - no one listened and endos said 'not hypothyroid' in 2008 and 2009. I finally got a diagnosis from Dr S in Feb 2010 and Dr P in May 2010 (also adrenal insufficiency). Levo just made me ill - but Armour Thyroid did wonders from April 2010 - Dec 2012, then T3 alone since then... I have good spells then something or other unravels again, new things turn up (I'm clearly still undertreated).

Did you get sorted out at all? I really hope you did Kind of like having hope that some people do get it 'fixed' sufficiently to return to a good life. Take care, be well! xx

[TupennyRush]

Hi there; I felt rough for 7 years (the last 4 sleeping up to 15 hours per night, having two hot water bottle strapped to me by a belt and feeling cold, gained over 4 stone and having evil hormonal migraines) while being told my thyroid was 'normal' and I was having an early menopause (three years later still not menopausal....)

My TSH didn't rise but my T4 and T3 were below or at the bottom of the range throughout. I was only diagnosed by changing GP (and when he diagnosed me I told him it wasn't my thyroid as I had been tested so many times and been told I was 'completely normal'. 

So persist in challenging you GP. Grab a copy of the Thyroid UK survey done last year to show the incidence of under diagnosis. Ask if you can have a trial on levothyroxine for a couple of months to see if it works and changes your levels (when I was finally, tentatively diagnosed they 'trialled' me on 25 mcg, I got up to 100 mcg before any real change to my levels which confirmed the diagnosis). A trial of a small dose of levo won't do a non hypo person any harm and is a way to confirm diagnosis. 

If you can't get diagnosed by this GP change and see if that helps. If all else fails go private (if you can) as your symptoms will only get worse (assuming it is hypo thyroid which it does appear to be) and I wish that I'd been told this in 2010 (when it started to get really bad) rather than waiting until Aug 2013 when I was finally diagnosed. 

I do know that when you feel that rough it's difficult to take on the doctors but it's so worth it. Other things worth stressing with them:

a. Any history of hypo/hyper in your family (I have Gran/Mum/Aunt and 2 cousins who're hypo/hyper)

b. Trawl the internet for scientific not web page print outs but the actual papers published by researchers. I've used this and been told by 2 endos that 'they will listen to me because I come in with scientific papers not some internet opinions put on by people who may not be qualified'. This was how I got my meds changed to NDT (which suits me better because I have DI02 gene snp; levo is good for around 85% of hypos so not advocating NDT for everyone before I get told off by an Admin!)

Good luck!

[Kitten44 in reply to TupennyRush]

Hi Tupenny,

Would you be able to send me the sources of the scientific papers you referred your GP with? I too am struggling to get a diagnosis, and GP just fobs me off, last TSH was 4.6

I just feel so intimidated by GPs, they treat you like you are just wasting their time!

Thanks!

[bluebug in reply to Kitten44]

You only need to worry when the GP implies they are going to strike you off the practice list if you come again. 

Personally I find coming in with private test results plus information from websites they use or scientific papers more effective in getting listened to. 

Plus depending on the condition, if you search you can find some NHS trusts publish online their protocol for treating and referring to specialists for different conditions. 

[Kitten44 in reply to bluebug]

Thanks for that. I was considering seeing a private doctor, but do I still need a GP referral or can I literally just ring any private endos and make an appointment?

[TupennyRush in reply to Kitten44]

I think that you can go straight to a private endo but I went for a private health check and got a referral (after the not particularly sympathetic private GP told me that all I needed to do was diet, exercise - he didn't believe that I went to the gym 3-4 times a week and did body pump/pilates or aqua - get my weight down and then all my symptoms would disappear!) to a private endo. If you're looking in London I can recommend one that looks at everything but as I was already diagnosed I'm not sure what he's like with ignoring the TSH must be >10 edict on diagnosing hypo....

Just for info; on levo my weight gain stopped (previously around 2lb per month) and I lost around 7lbs in a year. On NDT I have lost a stone in the last year and it's still going although slowly. I've come to terms with the fact that I'm probably not going to lose the 3 or so stones that I still carry over and above the weight that I was in 2010 (when I got really ill; I had put on around a stone in the 2007 -2010 period) but if I can get another stone off I will be happy and if I can get 2 stone off I would be ecstatic. I'm now just trying to reconcile my expectations with the art of the possible.... 

[TupennyRush in reply to Kitten44]

Hi there

I was diagnosed by my new GP solely on his own without me using papers to get the initial diagnosis; the ones I have are all for why I should get NDT/T3 because levo is not suitable for me.

Having said that the thyroid UK survey has a whole host of scientific stuff listed as references which may help and even just printing out the section on why the TSH test is not the be all and end all may help:

thyroiduk.org.uk/tuk/campai...

I've got a bit of a dodgy signal a the mo so can't do a full search on papers (am travelling) but will have a dekko at a few and post if any seem germane

GPs are terrible - i had one GP screaming at me that I was only ill because I was so FAT FAT FAT and if I just lost WEIGHT I would be fine. I tried to point out that I was (at that point) gaining 2lb per month on a less than 1500 calorie diet and she told me I was lying about my food intake. I showed her the myfitnesspal thing that kept saying to eat more calories and she called me a liar again

Keep at it