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Old 01-24-2011, 07:30 PM   #1
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Unhappy Scared and confused! What are my next steps?

This is my first post and I apologise in advance for it being sooooo long. I'm not quite sure where to start or or which question to ask first.

Im a 37 year old mom of 2, never had any major illnesses or problems when I was a child, had my first son at 20 and my 2nd at 28. Im finding it hard to pinpoint the day when I suddenly lost all my energy but would put it at approx 5 years ago. I put it down to various things but never dreamt in could be Thyroid related, I stupidly believed only old people suffered from Thyroid problems! I cant complain about being un-diagnosed as Ive never investigated it before now.

School holidays have always been miserable the last few years, when the kids are up and raring to go, Im almost crying and dragging myself out of bed at 1pm each day. School days are different, I struggle to get up but I know the quicker I get them to school the quicker I can get back to bed (makes me feel so awful saying it and its so unfair on my boys). I could sleep each day if allowed and quite often do at the weekend as I know my husband is there to take care of the boys.

The last 12 months things have got so bad, my mom has been on and on to get myself checked out but I put it off, my diet is not good so I thought my doc would fob me off. My symptoms are horrendous and Ive virtually ticked every one off in every list I read for Hypothyroidism.
Chronic Fatigue, dry skin, awful dizziness and feeling sick, my memory is shot, concentration span is almost zero, hair loss (head and eyebrows), dry sore eyes, noticable vertical ridges in most of my fingernails, muscle aches (I wake up each day feeling like Ive been beaten up), my head often feels like it weighs 5 stone! I feel panicky and very jumpy (which I thought may be causing my heart to beat really hard but apparantly this is just another symptom). I have had zero sex drive for almost a year and my menstural cycle is so sporadic I never know when to expect it next. More worryingly are some more very specific symptoms such as little bumps on the back of my arms which I believe is a build up of beta-carotene, the most awful one is a vile coating on my tongue (which no longer seems to fit in my mouth quite right) which has (as docs describe) a scalloped edge!!!

Things came to a head on Christmas day when I fell asleep at the dining table after dinner. I had been feeling at an all time low but put it down to the stress of xmas etc etc, my mom looked at me and said "have you seen that lump on your neck"? "How long has that been there"? Indeed there was quite a noticable lump just to the right of my windpipe, I really hadnt noticed it before so cannot honestly say when it popped up. Its not painful or tender and I cant feel it when I swallow.

I saw my GP a few days later and she said its a Thyroidal cyst approx 3cm x 3cm, she asked if I had been feeling unwell so I unleashed this whole tyrade of my symptoms etc etc. She said she was sending me for a Thyroid function test and depending on the results she would refer me onto a Thyroid specialist or an ENT specialist, in the meantime I was booked in for a Thyroid ultrasound. I have to say I was almost relieved that that she agreed my Thyroid could be underactive therefore causing all my symptoms and possibly the cyst.

To my shock my test results last week came back as normal, TSH 2.5, range 0.2-4.6, my ultrasound showed up 1 solitary complex nodule which is completley covering the right lobe of my Thyroid, Im so so scared now! I got a copy of my blood test today and only my TSH has been checked, Ive since read that I could still actually be Hypo as the T3 T4 and antibodies were not tested. I know it sounds weird but I was kind of hoping I did have this condition, at least I'd have an answer and be offered some treatment, and maybe it could of been a possible cause for this nodule which has me scared half to death.

I have also read about the Basal Temperature test which I have carried out the last 2 days, not enough evidence yet but my temperature has been 96.0f on day 1 and 96.2f on day 2. I believe that doctors sometimes use this method as part of their diagnosis, is this true?

It is apparantly notoriously hard in the UK to get a doctor to screen everything as part of a Thyroid Function test, do you think it is worth me fighting to get this test done or shall I start looking at other possible causes as to why I feel sooooo awful? I just want to feel normal again (or as close to it as possible).

Sorry again for the length of this post but I really dont know where to go from here xx

Sorry another thing I think worth mentioning is that 90% of the time I sit in the house with my coat on or a blanket around me as I can never seem to get warm, my fingers can go almost numb just by having my hands in the freezer for a short time, also I cannot shout a lot of the time as my voice seems to dry up and disappear. Ive tried to list all my symptoms at once but but the list seems neverending, please please dont think I'm exaggerating these at all xx

Also the blood test for Thyroid Function was carried out at 3pm, is it true that these particular blood tests should be performed in the morning?

Last edited by Netty0212; 01-24-2011 at 07:47 PM. Reason: missed information

 
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Old 01-24-2011, 08:54 PM   #2
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Re: Scared and confused! What are my next steps?

Hello Netty,

First off, let me say how sorry I am that you are going through all of this and have no definitive answers. I am by no means a doctor, but let me share a little of my story with you.

I have had a goitre in my neck for about 10 years now. About 9 years ago, I started having heart issues and anxiety attacks. I was sent to a cardiologist who found nothing and dismissed me. About 3 years ago, I started having severe symptoms like you are experiencing now. I was extremely exhausted. It went beyond just being tired. If I could have slept all day, I would have. I would drop my kids off at school, come home, go back to bed and wake up in just enough time to go get them. My skin was incredibly dry and my intolerance to cold was rediculous. I was sleeping in flannel sheets during the summer and also wearing a sweater and socks in 90 degree weather. I knew something wasn't right and I instantly thought thyroid. I went to my primary care physician who offered me every anti-deppressant you could think of. He told me I was a stay at home mom and of course I was going to be tired. I refused to accept his answer.

The point of my story is that you know your body better than anyone else. If you feel like something is wrong, then you are probably correct. I pushed and pushed until I got the answer I wanted and you need to do the same. By the way, my blood levels all came back "normal" and so did my ultrasound scan. Go see an ENT who will listen to your symptoms and get the answers you want. When doctors see what they call "normal" levels, they write you off. I was written off for 3 years and have finally been diagnosed with Hashimoto's and will be having a full thyroidectomy next week. Keep pushing!!!!

 
Old 01-25-2011, 03:47 AM   #3
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Re: Scared and confused! What are my next steps?

Hi Sleepygirl, thanks so much for responding to my post. Im definately going to push my doctor for these blood tests as I know something is wrong.

Ive just received my hospital appt in the post this morning for 4th Feb, the consultant who performed my ultrasound said I would be called back in for an FNA on this nodule so I'm assuming thats what this appt is for.

Can I ask what has led to you having to undergo the thyroid surgery? I was under the impression that the Thyroid is either partially/completley removed only if a nodule is found to be malignant? Is this what has happened in your case or have I been given the wrong information by my doctor? I do wish you the best of luck for your surgery though and hope you have a very speedy recovery xxxx

 
Old 01-25-2011, 08:19 AM   #4
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Re: Scared and confused! What are my next steps?

Quote:
Originally Posted by Netty0212 View Post
Also the blood test for Thyroid Function was carried out at 3pm, is it true that these particular blood tests should be performed in the morning?
Yes. When you have those antibodies checked the time of day doesn't matter but you need to get at least TSH and FT4 tested and those need to be taken early in the morning anyway.

Last edited by FinnMaid; 01-25-2011 at 08:20 AM.

 
Old 01-25-2011, 08:44 AM   #5
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Re: Scared and confused! What are my next steps?

Thanks Finmaid, The only test I had was for my TSH levels, my doctor simply gave me a form for my test and told me to go along to a walk in clinic in my area. She never mentioned anything about what time to go etc etc. As my blood was taken at 3pm am I right to assume that this could possibly lead to an incorrect result? If this is the case then I will tell my doctor that I would like to have another test (and also ask if the other levels can be tested at the same time), doubtful she will agree but I have to try xx

 
Old 01-25-2011, 09:02 AM   #6
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Re: Scared and confused! What are my next steps?

Quote:
Originally Posted by Netty0212 View Post
As my blood was taken at 3pm am I right to assume that this could possibly lead to an incorrect result? If this is the case then I will tell my doctor that I would like to have another test (and also ask if the other levels can be tested at the same time)
Yes and the reference range used is for morning levels too. Tell them you need to be sure of what's going on (sounds a bit funny that you had an ultrasound but not other basic thyroid tests).

 
Old 01-25-2011, 09:14 AM   #7
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Re: Scared and confused! What are my next steps?

Quote:
Originally Posted by Netty0212 View Post
Can I ask what has led to you having to undergo the thyroid surgery? I was under the impression that the Thyroid is either partially/completley removed only if a nodule is found to be malignant? Is this what has happened in your case or have I been given the wrong information by my doctor? I do wish you the best of luck for your surgery though and hope you have a very speedy recovery xxxx
I am glad to see you are finding answers here. What led me to my surgery is that my goitre and thyroid are starting to cause me difficulty breathing. Since I found out I have Hashimotos a partial thyroidectomy wouldn't be an option because my body would still continue to attack what's left of the the thyroid and would eventually lead to another surgery. I am not sure what your diagnosis was, so I don't know if the information your doctor gave you was correct or not for you particular problem. Make sure you ask every question you have and don't leave until you are statisfied. When I asked my first endo why I had a goitre and my levels and ultra sound were normal in his eyes, he told me sh*t happens. A really great answer. I refused to accept his answer so I got a 2nd opinion. You should walk out happy and if you are not, find someone who will listen to you. Good luck!!!

 
Old 01-25-2011, 04:27 PM   #8
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Re: Scared and confused! What are my next steps?

Quote:
Originally Posted by FinnMaid View Post
Yes and the reference range used is for morning levels too. Tell them you need to be sure of what's going on (sounds a bit funny that you had an ultrasound but not other basic thyroid tests).

Basically when I first saw my doctor it was to tell her about the lump that had appeared on my neck. After she examined me she asked if I had been feeling well or had any other issues. I told her how awful I had been feeling and listed my symptoms. She seemed to be in agreement that I was showing signs of an underactive thyroid.

She said the 1st thing to do was get a Thyroid Function test. Once she had received the results she would then decide the next step. If my Thyroid Function test came back with normal levels she would refer me to an ENT specialist to investigate the lump, if the test came back with abnormal levels then she would refer me to a Thyroid specialist.

In the meantime she booked me in for an ultrasound scan, this was arranged very quickly as she wanted the specialist (whichever one it turned out to be) to have my scan results available for when my appt came through.

My thyroid function test came back normal so she told me I would therefore be refered to an ENT specialist. The day after I was told my Function test results I had my ultrasound scan. The doctor who performed it told me that from what showed up on the scan the ENT specialist will definatley order a FNA of the nodule (he said it was very likely that it may be done the same day as my appt).

This is where I'm up to now. I recieved my appt with the ENT specialist today for the 4th of Feb, and while I'm very pleased that the nodule is being investigated so quickly I do feel all of the other symptoms have just been ignored as the function test came back within the normal range. Its only over the last few days and after sooooo much reading that Ive realised not everything regarding Thyroid levels have been tested, only my TSH level. I think Im going to leave it for now and discuss everything with the ENT specialist when I go to see him. Do you think this is the best thing to do?

 
Old 01-25-2011, 04:54 PM   #9
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Re: Scared and confused! What are my next steps?

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Originally Posted by sleepyallday View Post
I am glad to see you are finding answers here. What led me to my surgery is that my goitre and thyroid are starting to cause me difficulty breathing. Since I found out I have Hashimotos a partial thyroidectomy wouldn't be an option because my body would still continue to attack what's left of the the thyroid and would eventually lead to another surgery. I am not sure what your diagnosis was, so I don't know if the information your doctor gave you was correct or not for you particular problem. Make sure you ask every question you have and don't leave until you are statisfied. When I asked my first endo why I had a goitre and my levels and ultra sound were normal in his eyes, he told me sh*t happens. A really great answer. I refused to accept his answer so I got a 2nd opinion. You should walk out happy and if you are not, find someone who will listen to you. Good luck!!!
I havent had a diagnosis yet. Ive just been told my Thyroid Function test came back normal, (Ive since found out that only my TSH was tested). As that test was normal my nodule will now be investigated by an ENT specialist not a Thyroid specialist. All the information I got regarding the next steps was from the doctor who performed the ultrasound. I did have to push him quite hard for the info though. He told me I would have an FNA to try and determind the make up of the nodule, its was only because I kept asking him "and then what happens" and "what would than mean" and "what would happen in that case" etc etc (I think he was suprised at the amount of questions I actually had), he finally told me that it goes in this order:

FNA biopsy - if no suspect cells are found then leave the nodule alone and it will be carefully monitored. If the biopsy proves inconclusive they will either attempt another FNA in a months time or perform a surgical biopsy.
Surgical Biopsy: cells will be tested at the time of the biopsy, depending on what shows up the surgeon will probably remove the nodule and the entire right lobe of the Thyroid.

Does this sound right to you? From what I've read its seems as though everything is being done in the right order. Im just praying the FNA is not too painful and more importantly comes back clear, if not tham I'm all for having everything taken out even just as a precaution xxxx

 
Old 01-25-2011, 10:34 PM   #10
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Re: Scared and confused! What are my next steps?

Quote:
Originally Posted by Netty0212 View Post
I recieved my appt with the ENT specialist today for the 4th of Feb, and while I'm very pleased that the nodule is being investigated so quickly I do feel all of the other symptoms have just been ignored as the function test came back within the normal range. Its only over the last few days and after sooooo much reading that Ive realised not everything regarding Thyroid levels have been tested, only my TSH level. I think Im going to leave it for now and discuss everything with the ENT specialist when I go to see him. Do you think this is the best thing to do?
Yes one thing at a time, the appointment with the ENT specialist is so soon anyway. BTW, the FNA can also help your case because it'll also reveal if you have Hashimoto's thyroiditis and if you do they have to check your thyroid function properly.

 
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