please someone help me

[thyroidian]

please can anyone give me some answers. im a 38 yr old single mum, who had a subtotal thyroidectomy in 1998. for graves disease and removal of an adenoma. i have been taking thyroxine since 1998. but this year i felt terrible was losing my hair , felt tired ,joint pains and throat problems, a fullness in neck , swallowing problems, choking symptoms and neck pain,  had an ultrasound on thyroid which found a nodule of 1.5cm. my bloods were hyper adrenalism .hyper thyroid, and an iron overload. i had a FNA on my thyroid which came back suggestive of follicle neoplasm, my endo sent me to see a surgeon who said there was nothing he could do and that he wouldnt operate. i have been left with no ENDO and my symptoms in my neck are unbearable. please could anyone help me as im new to this site and have nowhere else to turn. do you think i should have a second opinion. PLEASE HELP ME.. THANX

[Smilerdeb]

I answered your posting in a message Nicola.
Hugs to both you and your Dad

((((hugs))))) xxxxx

[thyroidian]

Good evening deb, hope all is well with yourself, and your feeling ok,
Sorry i havent been in touch, but my dads, really sick in hospital, and had to have is full leg amputated, due to gangarene.
But ive a little problem, since my right lobectomy, ive been feeling like rubbish, cold, fatigued, exhausted, constipated, etc,etc
I went to my doctor and asked for a thyroid profile as i feel so bad.
These are my results, if you could help me with them i would be very greatful.

TSH 13.33
T4 .  8.66

Hes started me on 50mcg of thyroxine, and told me to go back in twelve weeks, 3 months for another blood test.
He said i was slipping hypo, but due to the way he treated me before, i dont know whether to believe him. I just know i dont feel right.
Our TSH reference range is 0.04-5.0
I asked to go on 100mcg thyroxine but he said its too much.
I havent posted this on the forum as ive always valued your advice and comments. As you are my girl,on this awful thyroid issue.
I hope im not asking to much off you, but i would really value your knowledge, and help on this situation. So i can feel better, sooner rather than later.
I dont know how to read the ranges off thyroid, and i dont know what T4 means in thyroid blood.

I hope you are fine, and taking some quality time.
Sorry i havent been intouch, i feel so lifeless.
BIG HUGS AND CUDDLES
NICOLA..XXXXXXXXXXXXX

[Smilerdeb]

I have answered your message Nicola...enjoy the 'peace' coming up
Hugs xxx

[Smilerdeb]

Aww Nicola...you have brought tears to my eyes.
I will answer your posting later this arvo when I am not working as I have been flat out with work and getting over food poisioning lol.
All good now though!
I'll pop into the forum later this afternoon...getting ready for work.

Hugs xxx

[thyroidian]

good morning , may i say a big thank you to a nice lady who i feel as helped me more in a week ,than ive had in a whole year struggling with my thyroid.here are some off my test results if you could help me i would appreciate it thanx.x        


cortisol          562   ref range 9am  171 to 536
iron                49    ref range 6.6 to 26.0
iron saturation 66    ref range 20 to 55
IGe                105   ref range to high
haemoglobin 15.6   ref range 11.5 to 15.5
HDL cholesterol  1.8 ref range   1.2 to 1.7
free thyroxine 22.9   ref range 12.0 to22.0
ferritin            84      ref range 13 to 150
lymphocytes 1.31     ref range 1.5 to 4.0


these are they bloods what came back highlighted as to being out of range if you could share any light i would be greatful, also i would like to tell you im going to have my nodule out what has been causing me so much trouble, but im having to go private, but the surgeon is one of the best. can i ask when i have my TT will i no longer have graves disease then (i hope not ) it would be like winning the lottery to know i havent got this. disease. haha. could i also ask you as well what other conditions go together with graves disease, i only ask because 11 years ago they diagnosed me with MS and whenever something went wrong with me they always said oh its just your MS and that was that, however this year the neurologist as told me i dont have MS, what a laugh hey. I ve taken amitriptyline, baclofen , gabapentin, dihydrocodeine, vesicare,and big doses of steroids for the past 11 years, and they say ive not got it now, its been a nightmare. but i couldnt get a mortgage when i wanted one and no health insurance, all because i had a label of MS, so i think my graves disease as took a back seat for the past 11 years, and i dont know much about it, like i do MS.  Im sorry if ive bored you but i feel like i can tell you as though i know you. But my main concern is to just try to feel a little bit better than i have been, that is all i ask. I hope you are fine and a big thank you to SMILERDEB..xxx

[Smilerdeb]

It doesnt take a genius to work out whats going on with you......just someone who has been through some of the he!! you are going through now.
I too lost faith in my Doctor and in a 'Graves Rage moment', I told my Doctor ..exactly that.
I looked at him and sobbed..tears streaming down my face telling him that if this was life, I didnt want it. It was then that he stood and took notice.
He took notice of the info I brought in. He took notice of the emails of info i sent him.
He took notice of ME and since then , he has always made me his last appointment for the day so that we can both sit down and discuss everything without a 'patient rush job'.
This was just before RAI (june last year) but it took over a year for him to take notice of the 'me' crying out in desperation.

I think we all have hit that stage at some time or another where it is just way too overwhelming and we have all felt helpless because no-one listens and very few understand.
yes we smile, yes we make out all is well but deep down inside....I think at one stage, we all 'die' inside until we find that peace of mind.

I will follow through your postings as I have done many others as when I went through Graves and Hyperthyroidism and started my 'journey ' for peace of mind, I was determined that if I could help just one person..then my job was done.
The biggest healer is staying positive and although there may be hurdles (I call them hiccups ) then you too will get through all this just as a lot of people here have.
Most know that I researched non stop before and after RAI & TT and still research.
That is where most of my knowledge comes from.
Do as I suggested and print out the postings or write them out and go to your Doctor with more knowledge now.
I am by no means a Doctor and may be wrong in some things so just get him to verify it all.
Hugs xxxx

[thyroidian]

You are so helpful in explaining so much to me. You sound better than a GP, lol,  I have made an appointment to go and see my GP  today with regards to a good second opinion, on the endo issue, i will keep you posted on that when i get back, also im going to ask about my bloodwork i had done nd see what he can do for me. My relationship is a bit off at the moment because when i first started being poorly about a year ago he said it was anxiety and i was a crackpot, because he couldnt find out what was wrong himself.and i had to do his job for him, but it was me who was suffering, and it cost me greatly.so i was not best pleased because all what was on offer was anti depressants. and i felt i didnt need them. He didnt take me serious enough, and i have lost faith.          You have helpedd me a lot, i feel and your UNIQUE, so glad your helping me with my itches,im having, you seem well learnered and know your stuff, may i just say to you smilerdeb a BIG THANK YOU once again please keep posting xxxx

[Smilerdeb]

Unlike papillary carcinomas, follicular neoplasms of the thyroid can only be diagnosed via surgical resection. Because the majority of these nodules are benign, the advantages of minimally invasive thyroid surgery.
I honestly think you have nothing to worry about in that aspect.

As for your Doctor and Endo.....your Doctor HAS to treat you or at least refer you to someone who can.
Make an appointment, take a list of questions with you and go through these questions one by one.

What you have described in your posting in regards to your blood can be fixed in they feel the need to draw blood weekly first off.
Ask your Doc for a 24 urine testing for Cushings Syndrome and also ask for your adrenals and pituitary gland to be tested too (via blood tests).
Hyper adrenalism is where the Adrenal Gland is producing too much Cortisol.
One reason for that is most likely Cushings Syndrome.
If you do have a tumour on your adrenal gland, it can easily be removed.

Eliminate each one and you will then find the answers.
Dont worry....we are all here to support you.
But first things first...ask for another Endo referral.

[thyroidian]

Thank you for taking time out to give me your support and great knowledge, i really do appreciate it i just wish you was in the UK, but instead your in sunny australia, When i questioned my GP about my iron overload he said i had an iron overload but my ferritin levels were ok? maybe you can shed me some light on this. My cortisol level was high for cortisol and they said i was hyper adrenalism,(dont know what that is). I think at the moment ive a few problems with my health, but my main concern is my thyroid issue, as its causing so much discomfort. Can i ask for another ENDO and what do i do if he refuses, as im the sort off person who shuts up and puts up, maybe if they did as much for thyroid sufferers as they do for diabetes we would be more informed and get treated better.. But can i ask you what does suggestive of follicle neoplasm in my biopsy mean and how should that be addressed as i dont think they are taking it as that serious and they just want to watch it grow. Please could you enlighten me on my rights with my GP and also a second opionion with a new ENDO....Your a very unque person thank you keep posting, youve been a tower off strength.xxx

[Smilerdeb]

bumping this up for others to post................

[Smilerdeb]

1.     Levels of high cortisol can be from other disorders...one being Cushings Syndrome and the other from Diabetes.
Have you been checked for these?
If not...asked to be tested. Print this posting out if you can and take it with you to the new Endo.
These conditions are what should be checked.

2.     IgE is a type of protein called an antibody. The body's immune system produces antibodies in response to substances it perceives as threats to your health. In the case of asthma, the immune system produces the IgE antibody to combat allergens. Allergens are inhaled into the airways, including the nose, throat, and lungs, and attach themselves to the mucus membranes that line those organs. The immune system then sees these allergens as invaders and starts a process to fight them off.
IgE role is to attach to the surface of allergen cells and certain immune cells in order to activate them. IgE is attracted to a specific kind of receptor on the cell. IgE is particularly attracted to the following kinds of immune cells:
    * Mast cells
    * Basophils
    * Lymphocytes
All of these immune cells have large numbers of IgE receptors. When IgE interacts with allergens and then binds with the receptors on the immune cells, they release a variety of chemicals, such as histamine and leukotrienes, that act as messengers in stimulating acute bronchospasm in the airways. IgE also causes the release of other chemicals that prolong underlying airway inflammation.
That is basically why you may be getting the choking feeling.
Do you suffer with Broncitis often or Asthma?

3.    Hemochromatosis is the disease that occurs as a result of significant iron overload. It can have genetic or nongenetic causes. In the United States about one million people have the disease, usually because of a gene mutation. When the disease is genetic, it is called hereditary hemochromatosis.
The age varies from person to person. Usually symptoms begin during middle age. Some people get sick sooner, others later.
Hemochromatosis affects everyone differently. Early symptoms may include fatigue, weakness, weight loss, joint pain, or abdominal pain. There is no definite set of symptoms to indicate that a person has too much iron. Diagnosing hemochromatosis is difficult because the symptoms are like the symptoms of many other diseases.
If hemochromatosis is not treated, it can lead to these conditions:
• Liver cancer
• Diabetes
• Heart disease
• Arthritis
• Impotence for men
• Cirrhosis of the liver
• Infertility and premature
• Bronze skin menopause for women
Hemochromatosis can be treated by a phlebotomy.
It’s the same procedure that is used when you donate blood. A nurse takes about a pint of blood from a vein in your arm. The procedure takes about an hour.
A phlebotomy is safe, simple, and effective. Because you will have frequent phlebotomies, your doctor will monitor your health more closely than if you were just donating blood.
How often you have phlebotomies — and how many you have — depends on how much iron has built up in your body. Most people have them once or twice a week for a year or more.
The good news is that after your iron is lowered to a safe level, you will have phlebotomies less often, usually a few times a year.
Most people feel just fine, but others feel tired afterwards and like to rest for an hour or so. It’s a good idea to drink liquids (water, milk, or fruit juices) before and after a phlebotomy.
You can get a phlebotomy at many blood donation centres (for example, hospitals, clinics, and bloodmobiles).

By the looks of it , I suggest you go back to your Doctor and ask for a referral to another Endocrinologist and ALSO a Haematologist.

An Endo cannot fix the Iron Overload.

I hope you have some success with your health.
Keep me posted as this one is quite interesting as it looks like you may be suffering with possibly 2 Autoimmune Diseases and a Blood Disorder.
(Sorry to be the bearer of bad news :( )
Hugs x

[thyroidian]

dear smilerdeb,   Many thanks for being so helpful, and being a great knowledge to me,  My ENDO, i think was a diabetic specialist, when he left me high and dry by sending me to a surgeon who had cold feet, he said to me go and get a good second specialist opion outside of our trust in the NHS, My main problems are the nodule which is right at the front on the right side off my neck is giving me some jip, pain burning, choking,swallowing problems, and my voice is very hoarse, I also have some veins at the side of my neck going up to my ear what are protuding and sore.  I just dont know were to turn as my GP when i started being poorly and complaining of something in my throat, said it was anxiety and to do some exercise.(what a laugh). I have suffered like this for nearly a year.Were they just wrote me off as anxious and being crazy. I had to pay for a scan to find the nodule and also pay for all my bloodwork myself. so im not best pleased being a single mum and finding it hard, financially.                  At the moment i havent got an endo, and im disgusted how they will leave a nodule in my throat what is suggestive of follicle neoplasm, maybe they are hoping it will go away, Also may i ask you is there a connection between thyroid and adrenal glands as im producing to much cortisol, but the doctors say theres nothing to worry about, i also have an abnormal IGE blood test but dont much about that?  My GP as been totally disgusting, and i dont think he realises what im going through, ive lost faith in him and feel i never want to see him again, But i wish it was sat in his throat so he could have a taste. I dont know what to do next or how to go about it so any tips, will be greatly accepted. Ive never had an Endo since i had my surgery in 1998, so ive not had any dealings with them until this one now.        I cant thank you enough, for all the advice and support youve given me, I just want to say a BIG THANKYOU, keep posting please.  P.S. they say my iron overload is not that bad as my iron his to much but my ferritin level is normal, if you could shed any light on this. I dont know what they mean all that my iron is way too high in my blood.

[Smilerdeb]

I cant recommend a surgeon as I live in Australia (quite a few good ones here tho lol)
But I can offer the advice that you should seek out another Endo.
Your Endo is not well informed on thyroid issues to 'fob you off' onto a surgeon then leave you 'high and dry' so to speak.
Get another Endo and ask about what I have previously posted.
Fot an Endo NOT to know about iron overload and about not drawing blood on a regular basis, then that Endo isnt worth seeing again.

By the looks of it , it seems RAI is your only option as with iron overload, you are prone to bleeding. I would aslo ask under the 'freedom of information act' for the theatre reports when you had your surgery done so as you can see if there were any complications.
Not many people know you can do this and if they refuse, ask your Doctor to request it.
This way you will know just what the surgeon did, any complications that may have arose...(anaesetic or bleeding problems etc).

Dont stop until you get answers and fire your existing Endo.
But rule number one.....when you see another Endo...DONT slam the first Endo...explain that you are not happy with the treatment.
Dont put any blaim on the last Endo to the new one as this gets their back up straight away.
Just explain your feelings, symptoms, previous history etc and tell your 2nd Endo that something HAS to be done about it.

Endo'd have ethical policies and if you make derogatory remarks about yr treatment to your 2nd Endo, you will get nowhere.
The best way of putting it is.....

"My Surgeon and last Endo feel they have done all they feel they can and that no further treatment is necesary and I believe that there is more treatment that can be done and that is why I am here to see you today."

Let me know how you go.

[thyroidian]

thank you so much for answering my questions as i feel im on my own. my endo says there is nothing more he can do for me as he referred me on to a surgeon. the surgeon said he was scared of operating again on a rethyroid surgery and he will just scan it to see if the nodule is growing, but i cant understand them leaving it in when its causing me so much discomfort, and being suggestive of follicle neoplasm on my FNA. they said my iron overload was nothing to worry about, in fact they have just fobbed me off.im considering of going private if you know off any good thyroid surgeons i would be greatful.as my endo says he cant do anything more for me as he sent me to a surgeon whos got cold feet.

[Smilerdeb]

The Surgeon would be worried about bleeding if you have iron Overload.

The only other thing the Endo can do is offer RAI.


If you have an iron overload (depending on how much overload) you are at risk of bleeding if operated on.
The usual proceedure for iron overload is to withdraw via IV..blood from you regulary to stop you having the overload.
Has this been mentioned to you?

If the overload is too risky then your only other option is RAI.
You should be discussing the options with an Endo.
Go back to your Endo and tell him/her that they cannot just leave you stranded like this.