Sub-Clinical Hyperthyroid with Severe symptoms

[isasoph]

Hi, I developed Hyperthyroid/Graves symptoms after having my first child, not just symptoms but also physical signs, like changes to hair, skin and nails, voice changes, weight loss, and even bulging eyes.  I was diagnosed with Inappropriate Sinus Tachycardia  - I also developed sustained sinus tachy and high blood pressure.  

After I had tests for thyroid issues the results kept coming back high end of "normal" range and so my condition gets ignored and has been for 6 yrs now, I've been tested dozens of times, all tests T4, T3, etc, antibodies, you name it.  I am battling everyday with my symptoms which are getting worse, my eyes for example have been gradually getting worse over the years and now look quite bulgy, I'm constantly being put on supplements for ferritin as even though my hemoglobin was normal my ferritin count was very low (iron stores in muscle), and more recently for Folic Acid as the most recent test stated that I was deficient.  I eat well but keep getting deficiencies.  

I have been on beta blockers to try and control HR and BP for all of these years, yet I'm not getting any better.  I have seen several Drs who refuse to even consider that my natural thyroid level might have been naturally lower than normal or very low end of normal range.  (Just before I fell pregnant I gained a fair bit of weight in that year and felt fatigue etc, then I fell pregnant, so I might have gone underactive then it changed after pregnancy).  Another thing that changed was that I used to work as a singer and after my symptoms started my voice changed and deepend a little and got quite hoarse, my range became very limited within a matter of weeks when it all first began.  Other things happened like nails coming loose on nailbeds on my toes, the "moons" vanished off all of my nails, every sign of an over active thyroid basically.  I am now experiencing problems with my cycle whereupon periods are getting lighter and lighter each month and I am experiencing headaches and rages a few days after my cycle.  

I've been tested for Pheo also because I get adrenalin surges at times, hence the rages, sometimes anxiety symptoms, or sometimes just feeling "wired" or hyperactive for no reason, the pheo tests were negative.

I just want someone to listen.

Can someone give me some advice on how to get Dr's to listen.  I've been discharged by 2 endocrinologists who could not find anything in my blood tests, no scans were ever done, 3 cardiologists who said they couldn't treat me because sinus tach has a cause and so I would have to see someone about finding the cause, therefore referred me back to my GP, and my GP has now referred me to a neurologist because neuro symptoms developed.  My initial symptoms started 8 weeks after giving birth to my first child, I went down from a UK size 14 to an 8 within those weeks despite eating normally.

I have been told by the Dr that basically there's no cure for what I have, they have said it's IST (which means sinus tach with no known cause) and there's not much hope, apparently if they can't find the cause (they call it IST (Inappropriate Sinus Tachy) you're stuck with it for the rest of your life.  I'm having more and more neuro symptoms these days, severe headaches, vision problems etc, and I just want to know how you actually persuade a Dr to listen and humour you enough to look into things further without sending you on your "merry" way with no answers.

[Red_Star]

Several medical disorders can be confused with Inappropriate Sinus Tachycardia which includes hyperthyroidism, pheochromocytoma, diabetes-induced autonomic dysfunction, and substance abuse.

Thyroid stimulating immunoglobulins (TSI) are responsible for Graves' Disease, thyroid eye disease (Graves' ophthalmopathy) and also the skin condition known as pretibial myxedema.

[gimel]

Is it possible to get them to test you for the possibility of Grave's Disease.  Grave's can cause the type of symptoms and test results you mentioned.  The test for that is the Thyroid-stimulating Immunoglobulin (TSI) test.  That way you could rule in or out that possibility.  If the test shows Grave's, it would be impossible for the doctors to ignore any longer.

If you are not familiar with Grave's, here is a link.

http://thyroid.about.com/od/hyperthyroidismgraves/a/risks-symptoms.htm

[isasoph]

Are you in the US or the UK?  I developed heart problems straight away, they said for the first year that it was anxiety, I was sent to a psychiatrist who did an assessment and referred me back to the GP with the recommendation that I was seen by specialists because it was completely obvious to him that I did not have anxiety and that what I had was physical and it needed investigating.  Since then I've been a pin-cushion for years and keep getting sent away back to the GP.  My new GP is lovely and he's at a loss, he doesn't however think it's my thyroid and has sent me to a neurologist because he thinks there's something going on with my brain affecting my hormones possibly among other things, hence all of the pain and pins and needles I get.  I hope that the neuro might look into the thyroid possibility because to me it is the SIMPLEST answer and the simplest answer is usually THE answer.  Here's hoping.

My TSH is low and my T4 was borderline (high end of normal) at one point.  My T4 hovers around 17-19, in the UK I think they recently lowered the normal range to about 19 or 20, it used to be 24.

I know that Thyroid ranges differ in other countries.  My best friend comes from Germany and we looked up normal range for his country and I would be considered over active there, but not with the UK ranges.  

I've only ever have had bloods taken but I am hoping perhaps they'll do a scan on my thyroid because I can physically feel that there's something wrong in that area.  Maybe the neuro might refer me, I have my fingers crossed.

[lindsay0891]

I'm in a very similar situation. My TSH is low but my free T4 is normal so doctors just don't want to hear it. I can't even see an endocrinologist because they won't refer me. I'm young and look healthy on the surface so they dismiss it as symptoms from a virus I had nine months ago! I feel terrible, I'm only 21 and the symptoms have completely taken my life away. My last hope is to go to a walk-in clinic and see if they'll refer me, and if that doesn't work I just give up. My biggest worry is that it'll get worse and I'll develop heart problems.