What a waste of time that was.....: Finally had... - Thyroid UK

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What a waste of time that was.....

yorkshiregirl44 profile image
13 Replies

Finally had my endo appointment this morning...not interested in my thyroid because blood tests said i am in normal range and they only refer to them.

They have agreed to send me for ACTH test...i think i already know where thats going.

I asked about 24hr saliva test,i was told that proves nothing and is no longer used.

I got weighed and sked them to change it into stones and pounds, the Dr. said your eleven stone..no i said iv never been eleven stone,im usually around 8 and a half and im loosing weight...she had calculated it totally wrong.

I know from coming on this site that many people expereince the same...its not acceptable....we are waiting for test/results....test/results and still remain unwell.

What next?

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yorkshiregirl44 profile image
yorkshiregirl44
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13 Replies

i no exactly how you feel im into week 6-7 and still not had any results :( think hes gonna wait till my appointment in jan but its not right , ive been unwell since 2010 and ive been pushed to all areas ...gastro....urology and now renal however this doc actually listened to me my symptoms my past and hopefully will give me a answer otherwise im going to bury myself, im sure i have hypo and i hope my tsh has gone up since 2010 but if nothing concrete is found, i go back to square one... trouble with gps and most docs is they dont listen to the patient and it annoys i wish i had the power to touch them and give them a day in he life of me , then tell me im ok ......hope u get some positive answers soon

yorkshiregirl44 profile image
yorkshiregirl44 in reply to

Hi and thanks...yes its so annoying...appointment after appointment and no further down the line/ I have a diagnosis of underactive thyroyd and Hashimotos...I was trying to get some answers to some other symptoms whcih ar very vague, nausea, feeling very poorly, weakness,dry mouth and just a feeling of not really being allert,pallpitations. What are your main symptoms?

in reply to yorkshiregirl44

i though all mine was kidney related turns out its not he thinks its thyriod/ autoimmune, my symptoms started 2010 with kidney infection had treatment then had a silly 3stone rapid weight gain and constipation ended up in hospital i was puking up, i had muscle weakness and numbness/tingling in legs couldnt sleep, mood swings..

then i lost the 3stone and now i cant lose and neither gain

i get abdo/loin/back pain, numbness/tingling and burning in legs toes numb fingers, muscle aches , headaches , ear trouble , dry mouth , gritty eyes, dry hair, eczema on face, sleep troubles, thinning hair and eyebrows, constipation on/off , feet and fingers sometimes swell, always tired but somehow get through working, cold feet and hands, and just lately it feels like i have a obstruction in front neck/throat worse when i lean neck forward or sleep on my back....

my tsh in 2010 was 2.33 so doc said normal, i did have low b12 treated with tabs and then nowt.....so this renal consultant took loads bloods for thyriod etc but not heard anything and gp have no records yet so i have no idea on whats going on, i go back to consultant on 27th jan i really hope i hear before then im sure its my thyriod causing these probs

yorkshiregirl44 profile image
yorkshiregirl44 in reply to

Hope you get to the bottom, life is no fun like this. Maybe you couldlet us know when you have a diagnosis, it really does help. Thanks

shaws profile image
shawsAdministrator

What can one say when endocrinologists do not even consider clinical symptoms for a diagnosis and the patient is left high and dry. To tell you you were 11st instead of 8!!

This is a list of symptoms you can tick off. If you have a copy of your latest thyroid gland blood tests, if you haven't already posted them. with the ranges so that members can comment on them and a couple of other links.

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

thyroiduk.org.uk/tuk/about_...

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

yorkshiregirl44 profile image
yorkshiregirl44 in reply to shaws

Hi, my tsh was 0.86..cant find mt t3 and t4 but think i remember t4 in lower end of the range.

whatss realy annoying me is i asked her about my hair loss on my arms and legs, not had a single hair in a few years, she said after puberty hair grows at a slower rate...come on...imnot talking about puberty here or even the years that followed when i had hairs.im 55...non of my friends of this age have lost their hairs. Why do they talk such rubbish. talki

I was talking toa guy in the hospital watiing room who had come back for a follow up appointment after his blood tests were suggesting pertuitry problems and one of the symptoms he should have had was facial hair loss...we were both laughing because he had a full bushy beard....so its my feeling that symptoms can vary from person to person and just because you dont have all the clinical symptoms does not mean you dont have a problem.

shaws profile image
shawsAdministrator

Hair loss from our bodies is another hypo clinical symptom. I think many sufferers maybe hairless. Luckily the hair on my head is reviving.

GP's are not trained in clinical symptoms - only to tell us how well we are by looking at the TSH.

From now on always get copies of your blood test results for your own records, you must also include the ranges and you can post your them if you have a query. Although a TSH of 0.86 is low, if you still have symptoms you may need a slight increase.

yorkshiregirl44 profile image
yorkshiregirl44

Thanks did you mean a slight increase in meds

Essex21 profile image
Essex21

I know how you all feel. Been waiting for Endo appointment for months only to be told I'm normal, to stop researching Thyroid and Parathyroid as my ranges are "normal". My calcium is elevated (2.56 mmol/ converted 10.24 mg/dl) but was told not high enough to worry about. Haven't felt well for nearly a year or more, TSH and other levels fluctuate all over the place. My symptoms are endless, can relate to Hyper, Hypo and HyperparaTHY. Oh and I was also told that my throat looks full, just by looking at me but I don't look like I have Graves so get tested for Antibodies and TSH again in a few months. Wonderful, I'll just plod along looking after 2 small children feeling like I've been run over every single day!

yorkshiregirl44 profile image
yorkshiregirl44 in reply to Essex21

My youngest is 16 so not in need of me in the same way....my heart goes out to you trying to get through the day and feeling like you havent the energy to put a brush through your hair...where do we all go with this,,its not right or acceptable...all we can do for the moment is learn and support each other and keep on fighting...what else is there.

Essex21 profile image
Essex21

No tests for either of those reallyfedup123 :-(

I just don't know what else to do now. They do your FBC blood test, that comes back fine so you're sent on your way. I'm in Sydney until the end of Jan and then return home to UK, I will follow this up when I get back but in the meantime is it right that I suffer these symptoms until then, and that goes for all that can't get diagnosed. It's just not fair, why don't GP's/Endo's listen to your symptoms and the affects it's having on your life etc rather than just going by your "normal" lab ranges, who decides these normal ranges!

i no its ridiculous at the very least i thought he would have sent me a hospital write up by now like the others as when you attend hospital down here they have to send you a copy but nope nothing i really do think hes going to wait till my appointment in jan :( ive been trying to treat my b12 with food/engery drink but no improvement , soon as i get my hands on some results there going up on here unless by a miracle i get diagnosed

yorkshiregirl44 profile image
yorkshiregirl44

what is central hypothyroid

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