Endo refused to see me: Hi Iv been suffering for... - Thyroid UK

Thyroid UK

137,625 members161,395 posts

Endo refused to see me

rimmer profile image
15 Replies

Hi

Iv been suffering for just over 2 years with hyperthyroid symptoms..was diagnosed with it last sep/Oct diagnosed twice but no medication from endo or doc..endo sugessed I had thyroiditis.. I was attacking my own thyroid.. but doc never assessed this diagnosis eventho my symptoms were of overactive thyroid..he took MORE bloods..n said my f.s.h was high n this was probably the menupause.I already knew I was going threw the menuapause in the Jan,but the symptoms were very light sweats normal menupausal symptoms..it was not until the march/ april..I started with server sweats,very fast heartbeat,total fatique nausea, shaking could not stand,or even make it to the loo for total fatique( have a commode downstairs now).. but doc has insisted its menupausal''he as had me on eight different drugs for the men up,,none have worked,,get in bk to my diagnosis of thyroiditis,, the endo said I sued av bloods done every three months to keep an eye on my levels,,my doc has now dismissed this,,saying bloods will only b taken when I feel I'll,,,WHAT!!! IDO FEEL ILL,,does anyone know what happens when yr diagnosed with thyroiditis???? Thank u if u read my rantings

Rimmer

Written by
rimmer profile image
rimmer
To view profiles and participate in discussions please or .
Read more about...
15 Replies

Don't waste time trying to fight the system, you will only wear yourself out. Help yourself, you don't need the NHS to "allow" you to get your life back. Many have been forced to self medicate - it's the best thing i ever did - only wish i could get back the years i lost thanks to NHS incompetence

rimmer profile image
rimmer in reply to

Hi bluedaffodill

Thanks for the reply...how did u self medicate..what meds do u use..iv tried all the natural remedies.. none have worked,,but they,v left me skint,all the meds doc put me on eight in all never worked,,my doc is quite annoyed I use the internet for meds n symptoms..thanks :-)

in reply to rimmer

Hi Rimmer

I have Hashimoto's, pernicious anaemia and coeliac. I use NDT i buy online as levo was like poison to me. I adjust dose according to symptoms (a radical approach i know!) and get my own blood tests done through genova so i can keep an eye on things.

These 3 diseases go hand in hand, so i also self med for P Anaemia as the NHS refuses to recognise my PA symptoms even though their blood tests show i have it! i inject every 2 to 3 weeks rather than 1 x every 3 months as they would have me do.

This is working for me FAR better than when the NHS was mismanaging my health and keeping my sick and undermedicated on levo, telling me it was all in my head (including the coeliac!)

Clutter profile image
Clutter

Rimmer, The endo recommending 3 monthly monitoring suggests your TSH is not yet high enough for treatment but autoimmune thyroiditis (Hashimoto's) will cause your thyroid to fail sooner or later. Make sure you request your GP does a thyroid test every 3 months.

Dr. A. Toft suggests that it may be pragmatic to treat with Levothyroxine to 'nip things in the bud' to prevent progression to overt hypothyroidism.

thyroiduk.org.uk/tuk/about_... If you want a copy of the article to show your GP email louise.warvill@thyroiduk.org.uk

rimmer profile image
rimmer in reply to Clutter

Thanks for replying cutter,,iv had words with my docs about it but he refuses to acknowledge what the endo suggested,,saying their is no need for three monthly bloods to be take as my thyroid only showed over activity in step/Oct then returned to normal levels,,,I don't even know what my values of t3 t4 ect were..doc said I would not understand them''but my symptoms are of over activity..iv now got him to look at adrenal over activity,,I'm going out a my mind...my life is on hold I can not go out to see mates or go to functions because of the awful palpitations, sweats shaking pins and needles in lips face hands ect .doc put me on beta blockers for my heart...tryed eight different pills for menuapause none have worked,,two years with this feels like a life time ...thanks for the reply :-)

Clutter profile image
Clutter in reply to rimmer

Rimmer, Data Protection Act entitles patients to their test results. Ask your practice manager for a printout of your recent results. If necessary, make a subject access request. Results requested within 40 days of a test should be free of charge other than a nominal £1/£2 to cover the cost of printer ink and paper. You can obtain all your GP medical records for £50.

ico.org.uk/for_the_public/t...

If the GP won't test 3 monthly as directed by the endo, put each request in writing and insist it be included in your medical records. What's the point of specialist advice if the GP ignores it? You might even consider seeing a different GP.

Unfortunately, Hashimoto's can make you feel hyper and hypo at the same time but unless your TSH is suppressed and your FT4 and FT3 are over range you aren't hyper and will become hypothyroid.

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

Pins and needles are one of the first signs of B12 deficiency so ask your GP to test B12 and folate. Sweats can also be a symptom.

b12d.org/b12-signs-symptoms...

shaws profile image
shawsAdministrator in reply to Clutter

Your GP cannot really not take notice of Dr Toft's Article. Dr Toft was President of the British Thyroid Association.

Clutter profile image
Clutter in reply to shaws

Shaws, you'd think so, but a member reported her GP dismissed the article with the comment "I've never heard of him".

shaws profile image
shawsAdministrator in reply to Clutter

Hi Clutter

Well, we know a lot of them know 'not a lot' about certain conditions, particularly it would appear thyroid gland problems. They also don't know or want to know more so they can help patients. They are extremely poorly trained in the endocrine side of the human body, particularly when it goes awry. It's so easy, to diagnosis by the TSH and to hang if the patient still complains. It's easy to hang 'hypochondriac' onto the patients file.

in reply to Clutter

Sounds about right!

Hennerton profile image
Hennerton

I am confused. Are you overactive or underactive? If overactive you will not be able to self medicate and need a good doctor or Endo's help to get appropriate medication.

rimmer profile image
rimmer in reply to Hennerton

Was diagnosed''as overactive twice step/Oct nearly 14 months ago..and I know the symptoms because I went overactive in 2004 n was very I'll for over 12 wks..doc kept saying it was a kidney infection..he didn't even take a urine sample just went off symptoms,,turned out it was overactive parathyroid glands,,do u know if it is the norm to leave overactive pacients with no medication..he now thinks it might b adrenal over activity..it is worse when I'm up n doing things

Thanks for the reply

Clutter profile image
Clutter in reply to rimmer

Rimmer, It would be really useful to see your results. Thyroititis is usually autoimmune hypothyroidism and Graves is autoimmune hyperthyroidism. Did you have antibody tests? It isn't uncommon to have a burst of overactivity prior to becoming hypothyroid, a sort of thyroid dying swan act. It's very unlikely that a hyperthyroid patient would be left untreated.

Parathyroids are totally unrelated to the thyroid gland and are only named such because of their proximity to the thyroid. There's information about hyperparathyroidism in these links:

patient.co.uk/health/hyperp...

parathyroid.com/

Hennerton profile image
Hennerton in reply to rimmer

I do think you need to ask for a referral to an endo. Your GP seems clueless. Overactive thyroid is a dangerous condition. You need to find out exactly what is wrong. Have you had blood tests?

rimmer profile image
rimmer

Hi thanks everyone for replying to my concerns,, I know thyroiditis is an autoimmune illness I also have rumertoid arthritis iv had this for over fifteen years as well as c.f.s and fibromyalgia..iv lived with these conditions for a long time I know the symptoms n signs of c.f.s and fibro.(.this is so different and more debilitating that the other conditions) I am practically a prisoner in my own home...hygiene is really hard as I sweat so much..n having c.f.s I get fatiqued a lot having to constantly take showers.I'm sad to say the doc who diagnosed me with c.f.s/fibro has sadly left my surgery due to an illness..and I'm now left with a male doc who seems more intent on using me as a Guinea pig.. I feel I'm the student and he is the teacher I can't question him on anything..on my last app I again appealed to him about my symptoms being like overactive thyroid,,he sharply slapped his thighs with his hands and firmly said I have nothing wrong with my thyroid..I became upset as my quality of life is poor at best,,I then told him I would not be taking anymore meds until he sorts me out,,as I said before he now thinks it could b overactive adrenal glands,,given that I have recurrent u.t,I,,and for the past two years have suffered with kidney pains I think this is the path to go down,''thanks again everyone ..will keep you posted on my results,,as iv now been told I'm being referred to an endo,,'unfortunately its the same one I had before,'here's hoping I get somewhere this time :-) :-) :-)

You may also like...

Endo refusing to see me can anyone help?

on a recent blood test. I've read lots of stuff on people low in T3 who have their thyroid but...

Endo refusing to see me

endocrinologist of the back of results. Endo is dismissing my blood tests saying because it was a...

NHS Endo refused to see me as I'm \"unequivocally normal\"

levothyroxine. Bloods done as per forum rules) and I'm still experiencing some horrendous symptoms....

Endo refuses to treat me on nhs

referred me to Endo last year (fourth one) but he refuses to treat me. He was informed that blood...

Anyone had an endo refuse to see them after a referral?

seeing my gp last week she agreed to refer me to an endo. I had the choose and book letter come...