# Where to from here?



## AussieMel (Mar 14, 2012)

Hi all, I stumbled across these boards and would like to get some advice/guidance if I could, as I left the Endo today a little flat.

I saw my Dr in hopes of finding an answer for my constant lethargy and hair loss more than anything else, but I also have a heap of other symptoms including restless sleep, feeling of something at the back of my throat, paleness, vagueness and very poor memory (getting worse), hallucinations upon waking, always feeling cold, pins and needles in my legs and hands - and more I'm sure, that I can't think of right now - all of which I put down to stress.

She sent me off for blood tests which came back with extremely low Vit D, which I'm now on drops for (and instruction to go in to the sun more often to activate it), a little low in iron and a slightly raised TSH level. The TSH level she said she wasn't worried about, as it was such a slight raise from the normal range, and I didn't have a family history (that I knew of).

A couple of weeks later my sister was diagnosed with Grave's Disease and Goiter, and my Aunt also advised me that my cousin had the same thing (and had his thyroid removed).

I made another appointment to see my Dr and discuss the now family history, and also found out in that time that my deceased Grandmother had thyroid issues - but no one was sure exactly what that was.

Dr said she still didn't think my case was worth medicating, and sent me off for an ultrasound of the thyroid gland. The scan came back with some "scattered hypocchoic areas suggestive of a mild form of Hashimoto's Thyroiditis".

After receiving the results, my Dr sent me for more blood tests to detect any antibodies in my system. Once the results were back, she called and explained that antibodies were present and referred me to a Specialist.

These are all my results to date;

15/2/12 - Thyroid Function Assays
FT4 10.2 pmol/L (9.0 - 25.0)
TSH 5.89 mIU/L (0.35 - 5.50)
FT3 4.6 pmol/L (3.5 - 6.5)

Consistent with sub clinical hypothyroidism.
Suggest thyroid antibodies. Please note that FT3 is not helpful in the context of an increased TSH value.

2/3/12 - Thyroid Autoantibodies
Thyroglobulin (TG) antibodies 325 U/ml (< 60)
Thyroid Peroxidase (TPO) antibodies >1300 U/ml (< 60)

I saw the specialist today and he was very Meh about the whole thing. Said pretty much "Yeah you may have Hashimoto's Thyroiditis or whatever you call it (his words exactly!!), there isn't a lot we can do about it, your levels of raised TSH shouldn't be causing any symptoms and I can give you drugs, but they probably won't help."

He then went on to tell me about a study of people who were given thyroid drugs, and how some were given placebo pills - and that some of the placebo pill patients reported feeling better, so pretty much it can be all in your head. He also said that he feels similar to how I described my sleeping patterns and exhaustion and that it's common for most people to have these symptoms in life with nothing wrong with them.

He said he would write me a script, and I can take them if I want, but that he wasn't for the drugs at all - and also ordered some different blood tests for other autoimmune diseases, which he said I could discuss those results with my own Dr when they came back.

He wrote me the script for 50 microgram EUTROXSIG (Thyroxine sodium tablets), checked me all over for any pain in the body or swollen glands (nothing), told me my symptoms were probably stress related and sent me on my merry way.

So now I'm left wondering what to do, to be honest he was the most unhelpful bloke and I'm not entirely sure why I even went there considering he already had my results pre-appointment and could have cancelled it and saved me $180!

I see there are a lot of people here who know what they are talking about, probably because they are actually going through it rather than reading a bunch of studies about people who clearly weren't suffering in the first place (the placebo patients? That, or power of the mind...)

I am going to tell my Dr all of the above, and let her know I wasn't happy with the specialist and see what she says.

But in the meantime, your thoughts?

And to everyone who clearly suffers a whole lot more than me if my symptoms supposedly aren't thyroid related - huge big hugs to you!!
hugs2

Oops, forgot to mention that I am 30yo female, I don't eat red meat or pork (only chicken and fish + all fruit n veg, I take iron and Vit C supplements, plus the Vit D oil) & this week after reading about Hashi's, I started trialling a gluten free diet just to see if I would feel any better (I'd do anything that may help!!)


----------



## Andros (Aug 26, 2009)

AussieMel said:


> Hi all, I stumbled across these boards and would like to get some advice/guidance if I could, as I left the Endo today a little flat.
> 
> I saw my Dr in hopes of finding an answer for my constant lethargy and hair loss more than anything else, but I also have a heap of other symptoms including restless sleep, feeling of something at the back of my throat, paleness, vagueness and very poor memory (getting worse), hallucinations upon waking, always feeling cold, pins and needles in my legs and hands - and more I'm sure, that I can't think of right now - all of which I put down to stress.
> 
> ...












My thoughts are that you do indeed have thyroid disease and you should take the med and immediately go doctor shopping.

With such high TPO and Thyroglobulin Ab, I caution you to be concerned about cancer.

Here is some info.

Thyroid cancer symptoms
http://www.cityofhope.org/patient_care/treatments/thyroid-cancer/Pages/symptoms.aspx

cancer TPO and thyroglobulin
http://onlinelibrary.wiley.com/doi/10.1111/j.1699-0463.1994.tb04888.x/abstract
http://www.wikigenes.org/e/gene/e/7173.html

Understanding Thyroglobulin Ab.
http://www.labtestsonline.org/understanding/analytes/thyroglobulin/test.html

In the U.S., AACE recommends the range be 0.3 to 3.0 for TSH. Some other countries say less like 2.0 being the top of the range and most of us feel best with TSH @ 1.0 or less and the FREE T3 and FREE T4 @ about 75% of the range given by your lab.

More info.........

Free T3 and Free T4 are the only accurate measurement of the actual active thyroid hormone levels in the body. This is the hormone that is actually free and exerting effect on the cells. These are the thyroid hormones that count.

http://www.drlam.com/articles/hypothyroidism.asp?page=2#diagnosis: standard laboratory test

Sounds like you are having peripheral neuropathy/myopathy.

Myopathy from hypo
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1010480/

peripheral neuropathy
http://www.ninds.nih.gov/disorders/peripheralneuropathy/detail_peripheralneuropathy.htm

http://www.suite101.com/content/thyroid-disease-and-neuropathy-symptoms-a140669

I have given you a lot to read; this is only the tip of the iceberg. We must learn to advocate for ourselves. Sad but true.


----------



## iroczinoz (Aug 15, 2011)

Considering you are not eating any red meat have your Vitamin B12 levels checked? If not I would ask for it.

If it is going to be low which I suspect it will you should supplement with some sublingual vitamin b12. You really want levels 500+.

Did the specialist order a cortisol check?

If not just go to your GP and ask for them there. I have found working with an open minded GP the best. Don't waste your time with specialists.

What are your Vitamin D levels like? Was your iron low?

Ferritin levels checked?

Probably worth while getting a little more blood tests to see if anything else is off.


----------



## AussieMel (Mar 14, 2012)

Thanks so much Andros for all of your links, I did start the medication... he said it can't hurt to take it, so I figure I may as well try! He probably gave me placebos instead of the real thing haha.

How does one go about being tested for cancer? I had an U/S done, is this not enough? There were no nodules or anything growing, it just wasn't smooth she said.

iroczinoz, that specialist did have B12 down on the bloods he ordered me to have done, so I will report back on that once the results are in. I'm not sure what else was ordered, as the B12 was the only writing I could make out... those pathology people are miracle workers having to read that scrawl all day long!

My Vit D levels were very low initially, I need to have a follow up done on those, my iron wasn't too bad at that stage either. I don't know if ferritin was checked, I will ask my GP when I go see her on Monday morning.

I will tell her to run as many tests as she can possibly think of, including allergy.

Thanks again for all your links, advice and questions - you both have helped a lot more than that specialist did!

M


----------



## AussieMel (Mar 14, 2012)

Andros said:


> With such high TPO and Thyroglobulin Ab, I caution you to be concerned about cancer.
> 
> Here is some info.
> 
> ...


Just quickly, I have none of the symptoms listed here, except for that swallowing thing, but it's not a difficulty as much as annoying. It just feels like there is constantly something (like phlegm) stuck up the back there.

The following represent symptoms typical of thyroid cancer.

* A lump in the front of the neck
* Hoarseness or voice changes
* Swollen lymph nodes in the neck
* Trouble swallowing or breathing
* Pain in the throat or neck that does not go away
* Persistent cough; coughing up blood

Patients with medullary thyroid cancer may also experience (in addition to the foregoing):

* Diarrhea
* Facial flushing/redness


----------



## joplin1975 (Jul 21, 2011)

I didn't have any of those symptoms either. In fact, I had very few symptoms and what I did have (mild fatigue and joint pain, primarily) I didn't acknowledge as cancer until after all was said and done.

Cancer is diagnosed with a fine needle aspiration or a biopsy. Generally they like to biopsy nodules that are 1cm or larger. If they didn't find any nodules (get a copy of your u/s report), then you might want to just make sure you are monitored regularly in case any develop later on.

I would certainly take the thyroid replacement medication. There's a link between auto-immune issues and cancer.


----------



## Andros (Aug 26, 2009)

AussieMel said:


> Thanks so much Andros for all of your links, I did start the medication... he said it can't hurt to take it, so I figure I may as well try! He probably gave me placebos instead of the real thing haha.
> 
> How does one go about being tested for cancer? I had an U/S done, is this not enough? There were no nodules or anything growing, it just wasn't smooth she said.
> 
> ...


When did you have the U/S done? Do you have any swollen lymph nodes in the clavicle area (neck/jawline?)


----------



## Andros (Aug 26, 2009)

AussieMel said:


> Just quickly, I have none of the symptoms listed here, except for that swallowing thing, but it's not a difficulty as much as annoying. It just feels like there is constantly something (like phlegm) stuck up the back there.
> 
> The following represent symptoms typical of thyroid cancer.
> 
> ...


Excellent news; I am so glad to hear this. It is not a good subject matter but we would be errant to not bring it up as it is sometimes part and parcel.


----------

