# desperate for help



## cyning (Oct 20, 2009)

Hi

I am really desperate to see if there is ANYONE with any ideas or who's been through this:

I was diagnosed with an overactive thyroid at 16 and had radioactive iodine at 19. My T4s and TSH were stable for aprox two and a half years but now I am seriously underactice for aprox year and a half: my tsh is all over the place and T4's are 5/6 on 300 miligrams of eltroxin per day. I am cold all the time, I am exhausted and have no quality of life with it. I have EVERY symptom going from weight gain (over 2stone) dry skin, losing my hair (at 23) exhaustion just anything you could imagine. I have in the last year seen an endocrinologist (who's bright idea was I'm not taking my tablets) a neurologist and my own GP and a colleague of his: noone can come up with anything except increase my eltroxin. I'm at the end of my tether I just would really apreciate if ANYONE could give me some pointers. Thanks


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## Andros (Aug 26, 2009)

cyning said:


> Hi
> 
> I am really desperate to see if there is ANYONE with any ideas or who's been through this:
> 
> I was diagnosed with an overactive thyroid at 16 and had radioactive iodine at 19. My T4s and TSH were stable for aprox two and a half years but now I am seriously underactice for aprox year and a half: my tsh is all over the place and T4's are 5/6 on 300 miligrams of eltroxin per day. I am cold all the time, I am exhausted and have no quality of life with it. I have EVERY symptom going from weight gain (over 2stone) dry skin, losing my hair (at 23) exhaustion just anything you could imagine. I have in the last year seen an endocrinologist (who's bright idea was I'm not taking my tablets) a neurologist and my own GP and a colleague of his: noone can come up with anything except increase my eltroxin. I'm at the end of my tether I just would really apreciate if ANYONE could give me some pointers. Thanks


Hi, Cyning...................welcome to the board.

Gosh; you sound in dire straits here. Let's see if we can help.

My first thought is that your thyroid may not be completely dead. I personally had to have RAI 3 times. Thyroid tissue grows back if any is left behind. Therein may lie your problem. It is impossible to titrate your Eltroxin when your thyroid is "sputtering" putting out one day and taking a vacation the next.

So, my suggestion to get to the bottom of this is to request and get a radioactive uptake scan to see what is going on.

My second thought is that you may have very low ferritin. Ferritin is the protein that stores your iron for cellular uptake. If ferritin is low, you are anemic and need iron. Ferritin should be 50 to 100 in the range and the closer to 100, the better.

Here is info on Ferritin and by the way, that could be why you need such a high dose of Eltroxine as low Ferritin impedes the efficacy of your thyroxine replacement.

http://www.webmd.com/a-to-z-guides/ferritin (There are 3 pages)

Also, are you eating goitrogens such as soy products or L-Carnintine which is an amino acid?

Do you have reason to think you may have a co-occuring medical conditon such as diabetes or Lupus?

We have to put on our thinking caps here.


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## cyning (Oct 20, 2009)

I'm definately not diabetic: of my dad and his 5 siblings 4 of them have type 1 so I'm tested every two months and am having monthly blood tests. I'm also tested regularly for vitamin b12 deficiency. Lots of history of autoimmune diseases in my immediate family!

My ferritin levels are slightly low so maybe that is a reason: they always have been so maybe thats inhibiting the absorbtion of the thyroxine into my body? Can they inhibit the production of thyroxine that much?

Also when i was overactive I put on 3 stone in weight and my immune system was so compromised they considered putting me in isolation: not "normal symptoms" either!

It might or might not be related but I also had raised Prolactin levels but they were back in normal ranges since.

What are goitrogens I've never come across them before?


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## Andros (Aug 26, 2009)

cyning said:


> I'm definately not diabetic: of my dad and his 5 siblings 4 of them have type 1 so I'm tested every two months and am having monthly blood tests. I'm also tested regularly for vitamin b12 deficiency. Lots of history of autoimmune diseases in my immediate family!
> 
> My ferritin levels are slightly low so maybe that is a reason: they always have been so maybe thats inhibiting the absorbtion of the thyroxine into my body? Can they inhibit the production of thyroxine that much?
> 
> ...


Good morning................ here is a list of goitrogens but do bear in mind that many meds, supplements and herbs can be goitrogenic as well.

http://www.whfoods.com/genpage.php?tname=george&dbid=47

What antibodies' tests have you had?


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## cyning (Oct 20, 2009)

Just found out I was preganant yesterday now I am worse that ever so scared....


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## Andros (Aug 26, 2009)

cyning said:


> Just found out I was preganant yesterday now I am worse that ever so scared....


Well, my goodness. Firstly, congratulations. And please do take this advice. Get to your ob/gyn like STAT. There is no reason that this should not go well.

And more importantly, read this................

http://www.thyroidmanager.org/Chapter14/14-frame.htm

Don't be scared; you will be fine. Is this your first pregnancy?


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## cyning (Oct 20, 2009)

Ya happy accident arty0006: no its great news just scared because of risk to my baby and morning sickness (and evening. and night) means its hard to keep my tablets down too


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## Andros (Aug 26, 2009)

cyning said:


> Ya happy accident arty0006: no its great news just scared because of risk to my baby and morning sickness (and evening. and night) means its hard to keep my tablets down too


Well; get w/ your doc and we will be sending good thoughts your way. If you can't keep your thyroxine down, you can get IV.


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## cyning (Oct 20, 2009)

Not pregnant anymore...


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## ritamay (Oct 20, 2009)

I'm so sorry to read this.


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## Andros (Aug 26, 2009)

cyning said:


> Not pregnant anymore...


Aaaaaaaaaaaaaaaw. :sad0047:

{{{{Cyning}}}} {{{{Unborn Angel}}}}


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