[NewDawn]

#1058857

Hi I’m new here. I apologise if I drone on a little. I’m so frustrated and exhausted. I have recently changed my doctor due to relocation. I was diagnosed with Graves disease and a VERY overactive thyroid almost 10 years ago (I’m now 41) eek At the time I couldnt put one foot in front of the other, I was shaking like a leaf, eating all the time, hot/cold sweats, anxious, stressed and, well you can imagine. After time my GP (I’m in the UK) carried out thyroid tests and I was prescribed carbimazole, which my body badly reacted to, swelling my arms, neck and face so much that I was admitted to hospital. I was told I had a nut or fish allergy and was treated with antihistermine (excuse spelling) and was sent home. I kept taking the carbimazole, the same thing happened, twice until the hospital reliased i was suffering from an acute reaction to the carbimazole. Eventually, I was told that my thyroid gland needed slowing down considerably and was given the option of either surgery or radio iodine. I opted for radio iodene, however, it took almost 2 years for my body/thyriod to “stabilize” in order to acurately predict if and how the treatment was succesfull. Eventually I was told that my thyroid was now underactive and have been taking around 125mg of thyroxin per day ever since. I still have Graves disease even though my regular thyroid test come back normal. Sometimes the disease grabs hold of me so hard that I literally am unable to function. I have serious bouts of depression and anxiety and feel totally exhausted and very very sore. Even after a short and slow walk I’m totally wasted. My ears are permanently ringing with tinitus and I suffer terrible insomnia. Although my previous GP was no expert with the disease, she did seem to make an effort to understand the endless list of symptoms I was dealing with and talk through medication etc. At my first visit with my new GP recently, I explained my condition and he seemed to look at me like I had 2 heads? I took the bold step of asking him if he understood the disease and was told very quickly that I was the patient and he was the doctor and he will ask the questions, not Me He has referred me to numerous specialists for tinitus and physio and mental health care, but in the meantime has refused to prescribe the medication which I have been taking for the past 5 years… A low dose of zolpidem for the insomnia. Paracetamol and Ibruprofen for the aches and pains and prescribed Gabapentine instead – quite a hi dose throughout all waking hours. When I researched gabapentine I was shocked to find it was an anticonvulsant prescribed to epilepsy sufferers, which carries with it the rather worrying side effect of feelings of suicide. I live alone and battle with depression every day, surely this isn’t a reasonable approach. I dont feel confident in approaching him about it and did not take the gabapentine. But now I have only the codiene based pain relief (which makes me very poorly) and I’m exhausted through lack of sleep. I am also confused with all the symptoms I still have even though my throid is now stable with thyroxin. Should I be asking if perhaps I am suffering from Graves and something else? My body went through a traumatic change and a lot of “shock” between diagnosis and treatment, I sometimes wonder if it’s still suffering from the trauma of being acutely overactive then underactive. (perhaps it’s just my brain thats overactive ) Every symptom I’m experiencing points so much towards fibromyalgia too, I’m so confused. My humble apologies for my War and Peace esque posting. There doesnt seem to be anyone or any place I can find help or answers, or just a little understanding. Dawn x

[Kimberly]

#1170435

Hello and welcome!

We have a few posters here from the UK, so hopefully, they will chime in with some suggestions, as I am not familiar with the health care system there. My initial thought would be to suggest that you find another doctor who you are more comfortable with! You are going to need to establish a long-term relationship with someone, if nothing else, for periodic monitoring of your thyroid hormone levels to ensure that you are on the correct dose of replacement hormone.

It sounds like you are sorting through a lot of different frustrating symptoms. We’re all just fellow patients here, not doctors, so I can’t give you any specific direction that might help pinpoint the cause. It might be helpful to put all of these symptoms in a short, bullet-point type of list to bring to a future appointment.

If your Free T4, T3, and TSH are all normal, it would probably make sense to look at other possible causes for your symptoms, rather than Graves’. Testing Graves’ antibodies would be an option (TSI, TRAb), which would give you a little more *information*…but since there is no cure for the autoimmune component of Graves’, this won’t change your course of treatment.

Wishing you all the best!

[NewDawn]

#1170436

Hi Kimberly, and thanks so much for your warm welcome. I think I will change my doctor. I can’t see my current doc being very empathetic towards me at all. The health care sysem in the UK is can be frustrating at GP level.
Testing Grave’s antibodies has never been suggested to me, in fact for all my frustrating research in trying to understand what the heck is going on with my body, I’ve never even come accross it. is it a new test? I remember many years ago a GP telling me my white blood cell count was hi. Is that it? All my T’s come back stable.
My mind’s like a soaked through sponge these days so new information seems to take an age to make sense
Doctors seem to look at me a bit puzzled, and I think thats probably my fault because I’m probably asking them for all the answers without using the right questions. Hope that make some sense x

[LadyGrey]

#1170437

Hi Dawn,
There is always so much going on with thyroid issues. I agree, find an endo you are comfortable with. Maybe their bedside manner is not the best, but in the end you have to be able to trust your doctor because of the course of treatment that will be presented to you. If the problem is your thyroid and it gets treatment perhaps some of your other issues may be lessened. First, find your doc then find the most important problem and start working on a fix for it. Take one day at a time. Let time help you heal. Best of luck finding a endo. Hugs and prayers, Priscilla

[NewDawn]

#1170438

Thanks Pris, It’s therapy in itself hearing words of encouragement and understanding (that makes me sound like a right old wuss). My biggest problem is trying to get accross to my gp the confusion I feel about what is going on with my body and mental state. I seem to go through cycles of physical issues, which are fairly quickly overtaken by exhaustion and emotional turmoil. I was treated for about 2 years by an endo at the Christie hospital in Manchester UK, but after RAI and a long stabilization period (2 years) I was refered back to my GP, that was over 5 years ago. I didn’t quite realise that most of the battle was just beginning.
I’m going to try and find a new GP. In the meantime I wonder if anyone could help me de-mistify a couple of issues I’m struggling to get my head around?
Are the T’s blood tests testing for abmnormalities in the imune system or are they specific to thyroid functions? I completely understand that we are all patients or friends/family of patients and not doctors, but when i suggest these types of questions to my GP I’m made to feel very much like I’m speaking out of turn.
(I also solemly promise to post on good days xxx

[Kimberly]

#1170439

Hello – No need to post only on “good” days…that’s what we’re here for!

There are actually lots of “T’s”. T3 and T4 represent the actual levels of thyroid hormone circulating in your body. T3 is the more powerful and active hormone of the two. Some tests will measure the amount of T3 or T4 that are not bound up by proteins, and therefore available for the body to use. These are referred to as “Free T3” and “Free T4”.

TSH is a substance produced by the pituitary gland that either directs the thyroid gland to produce more or less T3/T4. When things are working properly, the amount of TSH produced by the pituitary depends on a “feedback loop” according to where our T3 and T4 are. If T3/T4 levels are *low*, you should see the TSH levels *increase* in order to prod the thyroid gland to make more hormone. If T3/T4 levels are *high*, then you will see TSH decrease to tell the body to stop making more thyroid hormone.

The most common antibody tests used in the U.S. are TSI and TRAb. They are primarily used to help doctors initially diagnose cases of Graves’. They are not used as frequently after initial diagnosis. Cases where antibody tests might be run include when a patient is getting ready to come off of ATDs (as low antibody levels predict a better chance of remission), when a patient with a history of Graves’ is pregnant (to determine if additional fetal monitoring is needed) and sometimes in patients with eye disease to help determine if the disease has reached the inactive phase. Antibody testing is expensive, so outside of these cases, it is rarely used.

As I mentioned, antibody testing might give you some information; a positive result would be a heads up to keep an eye out for a return of hypER symptoms. However, right now, the results likely wouldn’t have an impact on your current course of treatment.

Hope this helps!

[snelsen]

#1170440

TSH, T3, T4 are all thyroid function tests.
I guess, since it is an autoimmune disease, you could also say that it tests abnormalities in the immune system regulating the thyroid gland.
But not the WHOLE immune system (I don’t think you meant that, did you?)

Here’s a nice reference for you from webmd
http://www.webmd.com/a-to-z-guides/thyroid-hormone-tests

I am a fellow patient, not a doctor. But it is not necessary to be a doctor to tell you that WBC lab count is not a thyroid test.

Here’s a nice reference to understand your prior question about white blood cell lab test. The name of the test is CBC (stands for cell blood count)
It primarily is looking at white blood cells and red blood cells.
In very basic terms, if a WBC is very elevated, it can confirm that there is an infection someplace, and/or we are sick! The layperson way to think about it is our white blood cells increase in number when they sense we are threatened by an infection. BUT, as a fellow patient, I refer you to the following nice reference that explains CBC, of which WBC is a component of the CBC. Happy reading, hope this is helpful to you.

WBChttp://www.medicinenet.com/complete_blood_count/page2.htm
Shirley

[Tissy]

#1170441

I just want to say ‘Hi!’ . I am also in the UK and feel that something is not right. I had Graves Disease confirmed years ago, and had RAI for a very overactive thyroid, my symptons were similar to those you describe. I did feel very well for a while afterwards. The problem with me, I feel, is that other life issues get in the way, and you cope because you have to, plus menopause, I don’t know where I am so not sure why anyone else should either.

I just feel so tired all the time! Itchy shins, and eyelids, hot flushes, feeling cold, fogginess etc. I have had tests, and although I am still waiting for the results of an antibody test, am told everything else is normal.

I am thinking of contacting an endocrinologist direct, by passing the GP, not sure how that will go down, as you will understand its usual to go through the GP over here. Also, I feel a bit foolish, my GP said on last visit that I have mild depression and will feel better when the sun shines! I cried when I left the surgery! So maybe he is right with that!

I too find the test results confusing, despite the kindness of so many people trying to explain them, the info just doesn’t stay with me. I understand the TSH but that’s about it. I need one of those Dummy Guides, I wonder if there is one to Graves Disease

Sorry to take over your thread, I really just wanted to let you know you are not alone

[RebeccaJT]

#1170442

Hi

I am in the UK and I have had one hell of a time getting diagnosed and then getting treated. I’m sorry to be direct but given care in the UK is so appalling I’m going to just come out with it – you sound under-treated to me – the symptoms you list are hypo symptoms – and also I’m wondering why you’ve not had scans etc to see whether you also have thyroiditis and I agree that antibody tests are crucial to see whether you have Graves and / or Hashimotos disease – another form of autoimmune thyroid disease.

I have an utterly brilliant doctor who is based in London – he sees people in a private clinic (think the hit US TV series House, his clinic is to help people get the right diagnosis) and he is also the consultant endocrine surgeon at a world renowned teaching hospital. He is also human, humble and has a brain like a giant computer. His exact words to me ‘GPs and endos don’t know what they are talking about’ – seeing him was like going from night to day! Given that I had a ferociously inflamed thyroid and thyroid cancer to boot, that man saved my life.

You could see him privately in a matter of days and I promise you he will sort you out, the man is a genius. You can also read my story on the thread, ‘What to ask surgeon re thyroidectomy’ – there are still a few bumps in the road but let me tell you right now, THE ONLY THING THAT IS WRONG WITH YOU IS YOUR THYROID YOU ARE NOT MAD, MENTALLY ILL, NEUROTIC, HYPOCHONDRIAC or any other patronising label that lazy doctors slap on patients they don’t know how to treat. Plus in my humble opinion fybromyalgia is a junk diagnosis given by incompetent doctors who don’t know what they are talking about.

I’m sorry if that is a bit forthright but I get so angry at the way thyroid patients are treated. I’m afraid you are going to have fight to get the right care, and you will need to get your head around all the ins and outs so you are an ‘expert patient’ but you are most definitely in the right place to get sorted out – there are some wonderful people on this forum and some great advice.

Don’t give up, it is possible to feel well and that is your right, this disease is VERY treatable, it just requires your doctor to get off his backside and do his job. And if your GP won’t do that, get another GP.

Best wishes

Rebecca
xPS feel free to send me a private message if you’d rather.

[Author]

Posts