Nothing from Mibi or Ultrasound

First topic message reminder :

Morning all,

Just had my U/S with no PTH gland in sight, same with my MIBI! I might be sent for an MRI, just waiting to hear.

I wasn't expecting to hear anything positive but once again I feel gutted! I don't know what else to do from here! Had a terrible headache past couple of days with scratchy throat!

  

Xx

Thank you, I will start composing my email.

My symptoms are tiredness, palpitations, thinning hair around front left side scalp, constipation, headaches, feeling of hyperactive insides, bone pain in wrists and hip. Felt unwell for over a year, had every single possible blood test done, also had a 24hr urine collection but off the top of my head I can't remember the result, although I thought the Calcium was high but Endo disagreed. I've had an elevated TPO Ag in Jan that nobody seems bothered by and my Thyroid tests always come back different, even if they've been tested within a few weeks and I was told that Thyroid levels don't usually change dramatically in a space of a few months. 

Typically when I'm asked face to face what symptoms I have I go blank!

Lucie i think you should head in the direction of thyroid issues as your symptoms are fairly classic for hypothyroidism. Hairloss in hpth is usually on the crown but in thyroid disease it is around the temples which i think is what you describe. Worth getting some new thyroid bloods done to see where they are now.

Nelly

Lucie, I was told once by Dr. Norman that I did NOT have HPT. Yes, it was devastating to read that email, because I was suffering so terribly and was so darned sure I DID have the disease. It was not a nasty reply. It just stated that I did not have HPT. It bothered me so badly, I waited 2-1/2 more years before I contacted him again. I was afraid of more rejection. I was very afraid to open that second email! I can't tell you how thrilled I was when I read the first few words, telling me I definitely had at least 1 tumor, and that he would be honored to take care of that for me! I sat here and cried. It made up for that huge disappointment the first time. Give it a shot. Just remember, as others have started on here, he obviously has some bad days, and if you happen to contact him on one of those days, it's NOT your fault if the reply is not pretty!!! Go for it. You have nothing to lose!

Audrey

Oh, and I forgot to mention, Lucie, that your symptoms sound a lot like mine did. I too had a lot of hair loss, and mine too was in the front of my head around my face. It all started growing back in immediately after surgery. I wish I would have taken a picture of this new hair growth. It was so exciting to see the little forests of hair appearing.

Nelly, regarding this, I also have hypothyroidism, but I've never had a problem with hair loss due to that. I know it is a symptom, but my hair was fine until about a year before I was diagnosed with HPT, and then after surgery, the hair all grew back. So I'm guessing my hair loss was due to HPT. I think Dr. Norman states that the hair loss from HPT is usually in the front around the face. I could be wrong, since I can't seem to remember crap anymore. I'll have to check that.

Audrey

Thank you Audrey, I will email him.

My hair thinning is around the front of my scalp, if you were to push my hair back it's thin compared to the other side and it's only happened in the past year!

Xxxxx

Audrey you have been lucky as hair loss is one of the most common thyroid symptoms and the one that bothers most people on thyroid forums. It affects all ages in thyroid disease, both hypo and hyper whereas hair loss in hpth affects "predominately middle age females".

Lucie have your eyebrows thinned or lost the outer 3rd ?

Nelly

Hi Nelly

No, my eyebrows are fine. My mother in law is Hypothyroid and my Mum is Hyperthyroid and both of their eyebrows are non existent! My hair has thinned a lot along the parting and front and it feels thin when I put it in a pony tail.

Thanks
Lucie

Does your Mum have Graves which is an autoimmune disease? if you also have antibodies that is another box ticked for an autoimmune thyroid problem as it does run in families.

For your sake it would be better to have hpth as that can be cured (well hopefully) whereas thyroid disease is for life so not the better option really.

Nelly

Hi Nelly

As far as I am aware she has never been diagnosed with Graves Disease, just Hyperthyroid. Im off to the GP tomorrow in hope that she will see my point in all this, this may sound a silly question, do elevated TPO Ag only show with Thyroid issues? I was told once by a GP everybody had Thyroid Antibodies??

Lucie this explains antibodies better than I can

http://www.labtestsonline.org.uk/understanding/analytes/thyroid-antibodies/

You can have antibodies without it causing disease, depends on the level, if your result was sky high then more likely they will cause a problem.

Is your Mum on long term meds or has she had surgery or radioactive iodine ? 

Nelly

Thank you Nelly, I will have a read of that link in a moment.

My Mum takes Carbimizole and she's tested every 6 months. The TPO Ag was just under being out of the range, if that makes sense. 

Thanks again
Lucie x

If antibodies are in range they aren't a concern. A doc will only take notice if they are high and well above range. 

But you can have thyroid disease without antibodies, the treatment would the same.

If your GP is willing then get TSH, T3 and T4 tested, but if TSH is tested normal most labs won't test T3 or T4, silly system.

Nelly

Yes I know, nobody wants to know until anything is well out of range and labs won't test unless TSH is out, grrrrr! Pointless!

Well thank you all for your input, much appreciated and very informative, better than GP   

Xx

My hair became thinner on one side too, but both sides did thin quite a bit..

I'm glad you're going to email Dr. Norman. As far as your doctors not being too thrilled if you are diagnosed by someone over here, who cares? This is YOUR health. YOU are the one suffering from all of this! If doctors would do their jobs, other doctors would not have to step in and help! I have come across that several times over the past few years. I need answers, and I need help, and I will continue to contact ALL doctors until I am well again! Good luck!

Audrey