# hyper, but drug-induced hypo now



## susie1611 (Nov 10, 2012)

I was born in 1985, ie I am now 27 years old.
I had an overactive thyroid first in Apr 2008 and was on meds for about 18 months. Then I was in remission. This summer I had a relapse.

24/09/2012
TSH: <0.03mu/L (T4: 27.7pmol/L)

from 01/10/2012 to 09/11/2012
20mg Carbimazole for 16 days, 10mg for the rest

08/10/2012
TSH: 16.2 (T4: 6.4)

10/11/2012
stopped the Carbimazole completely till I at long last (after 2 months waiting) I get to see an endocrinologist. (all praise the NHS and its efficiency)

ie went from hyper to hypo, a repeat of 2008, despite me starting on half the initial dose most patients are apparently started on.

1. despite doctors telling me that you need to wait 8 weeks for a change to show up in your TSH levels, how come I became so quickly underactive? I don't understand - how quickly do changes occur/ now that I've stopped the Carbimazole, when will my thyroid be normal/overactive again?
2. I am feeling really awful now, and it's much worse to have an underactive thyroid as you tend to gain weight on top of all other nonpalatable symptoms. what is my maintenance kcals now with a TSH of 16? any way to know? (Even if I am hungry I am disinclined to eat as my clothes are already too tight, I have put on a bit of weight and I don't want to balloon further)
3. people tend to speak with such authority on the internet, but anyone could confirm for me (based on true medical advice) am I not supposed to eat peanutbutter, broccoli and soya now?? Even steamed/boiled broccoli is inadvisable? I eat a lot of that, I have IBS too, so what I can eat is v restricted. 
4. do I have Graves disease? or what is the underlying cause for my overactive thyroid? is there any way to know?
5. if we get the thyroid under control and again through medication I go off the pills completely in a year's time, will I again be in remission only? what are the chances - will I have hyperthyroidism again? or worse, hypothyroidism? I am not free from eating disorders, I pile on the flab in all the wrong places in general, so have real issues with weight gain and can't imagine anything more unfair/scary than piling on the pounds despite not eating. an overactive thyroid is still better than an underactive thyroid as at least one tends to lose rather than gain weight then.

many-many thanks for any thoughts/advice.


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## Lovlkn (Dec 20, 2009)

Do you have any lab ranges you could share?

FT-4 and FT-3 are the best gauge for active thyroid hormone in the blood - ask your doctor if they will begin running those tests on you.


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## susie1611 (Nov 10, 2012)

Lovlkn said:


> Do you have any lab ranges you could share?
> 
> FT-4 and FT-3 are the best gauge for active thyroid hormone in the blood - ask your doctor if they will begin running those tests on you.


10mg thiamazole per tablet
TSH normal range: 0.3 to 5.5
FT4 normal range: 10-19.8

2008-2009
*2008 April 16: Hyperthyreosis syndrome --4 Metothyrin/day-- 1 tablet less every 10 days (TSH: 0.008,FT4:25.09) also stopped from May 4 for a week/couple of days (?) due to low white blood cell count
* 2008 May 23: "patient didnt take medication as she should have!" --1/2 tablet every second day (45.670, 6.970)
*2008 June 20: 1/2 tablet every second day (5.470, 18.04)
*2008 July 23: 1/2 tablet every second day (2.730, 13.7 )
*2008 September 9 --1/2 tablet every second day (1.730, 15.940)
*2008 November 3 --1/2 tablet every THIRD day (3.770, 13.670)
*2009 january 7 1/2 tablet every third day (1.810, )
*2009 February 24 1/2 tablet every third day (1.820, 16.740)
*2009 April 22--no medication (2.8, 15.95)
*2009 June 9: check up: NEGATIVE  TSH: 2.49 uIU/ml (norm.:0.27-4.2)

2010 Dec 8: TSH:2.28, FT4:12.9
2011 Oct 25: 3.10, 15.3

2012
2012 Sept 24:TSH: <0.03mu/L (T4: 27.7pmol/L)

from 2012 Oct 1 to 2012 Nov 09: 20mg (2 tablets) Carbimazole for 16 days, 10mg (1 tablet) for the rest

2012 Nov 08: TSH:16.2, T4: 6.4


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## Andros (Aug 26, 2009)

susie1611 said:


> I was born in 1985, ie I am now 27 years old.
> I had an overactive thyroid first in Apr 2008 and was on meds for about 18 months. Then I was in remission. This summer I had a relapse.
> 
> 24/09/2012
> ...


Firstly, to my knowledge there is not such thing as permanent remission. Or at least I have never been told of it from a credible source.

It would be in your best interest to have some antibodies' tests run.

TSI
Normally, there is no TSI in the blood. If TSI is found in the blood, this indicates that the thyroid stimulating immunoglobulin is the cause of the of a person's hyperthyroidism. 
http://www.medicineonline.com/topics/t/2/Thyroid-Stimulating-Immunoglobulin/TSI.html

Trab
http://www.ncbi.nlm.nih.gov/pubmed/17684583

TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.

You can look this stuff up here and more.........
http://www.labtestsonline.org/

If you have not had an RAIU (radioactive uptake scan), you should.

There is certain criteria for Graves'; otherwise you are hyperthyroid.

The criteria for Graves' is clinical. You must exhibit..........goiter, exophthalmos, pretibial myxedema and thyrotoxicosis as per Dr. Robert Graves' of the 1800 era. 3 out of the 4 qualify.
(3 chapters) http://www.thyroidmanager.org/chapter/graves-disease-and-the-manifestations-of-thyrotoxicosis/

http://www.thyroidmanager.org/chapter/diagnosis-and-treatment-of-graves-disease/

Otherwise you are classified as hyperthyroid either because of Hashi's, the criteria for that being high TPO Ab and a grapelike appearance of the thyroid, both of which are "suggestive" because this is commonly seen in Hashi's with FNA (fine needle aspiration) confirming those suspicions "if" there are Hurthle Cells indigenous to Hashimoto's. Or because of cancer. We don't know which comes first, the hyperthyroid or the cancer. We just know that they are often found together.

If you are now temporarily hypo due to blocking and binding antibodies' to the TSI receptor site, you would do well to avoid soy and sadly most all peanut butters now have soy which should be against the law but who am I to say) and avoid all goitrogenic veggies......................for now.

If you are hyper, you can eat this stuff to your heart's content.

Have you been offered a permanent solution such as surgery or RAI?

That's the best way to get on track w/your life and your weight. Meanwhile, when I was in limbo such as you are, I found Dr. Atkin's Diet prevented me from gaining more weight.


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## susie1611 (Nov 10, 2012)

Andros said:


> Firstly, to my knowledge there is not such thing as permanent remission. Or at least I have never been told of it from a credible source.
> 
> It would be in your best interest to have some antibodies' tests run.
> 
> ...


Thank you, that's a lot of information.

I am waiting to see an endocrinologist, it takes months here in Britain. I have not been given any info on a 'permanent' thyroid solution. I don't have children yet, and I am not sure it'd be good to have such invasive surgery before having children so that I am to be on medication during the future pregnancies and indeed the rest of my life?!

If I had any of these tests in 2008 and it came back negative, does that still apply?

My peanut butter has no soya in it, it's got peanuts and salt in it, it's not your commercial US variety. It hasn't got sugar or palm oil even, let alone soya. I would never eat raw green veggies, I have IBS, so all veg I eat is thoroughly cooked. I presume by the Atkins diet you mean that high fat low carb diet? A high fat diet is the worst thing you can do if you have IBS. The pain is unbearable, so I can't gorge myself on bacon I am afraid. funny you would advocate low carb diets, when I thought there was a chance that low carb diets caused thyroid disturbences in the first place?!

I was hyper and I am now drug-induced hypo, if you look at my stats above you can see that just like in 2008, I was yet again overmedicated. Having an underactive thyroid is ten times worse than hyperthyroidism imo, I don't understand why I had to wait 5 weeks with the blood test instead of having had one 2 weeks into starting the Carbimazole (thiamazole).


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## Andros (Aug 26, 2009)

susie1611 said:


> Thank you, that's a lot of information.
> 
> I am waiting to see an endocrinologist, it takes months here in Britain. I have not been given any info on a 'permanent' thyroid solution. I don't have children yet, and I am not sure it'd be good to have such invasive surgery before having children so that I am to be on medication during the future pregnancies and indeed the rest of my life?!
> 
> ...


I certainly do not advocate eating bacon; I don't eat processed meats at all. Ever.

Good for you about the peanut butter!

If you want us to look at your 2008 antibodies' tests, please post them w/the results and the ranges. I am sure we will all be happy to comment.


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## susie1611 (Nov 10, 2012)

Andros said:


> I certainly do not advocate eating bacon; I don't eat processed meats at all. Ever.
> 
> Good for you about the peanut butter!
> 
> If you want us to look at your 2008 antibodies' tests, please post them w/the results and the ranges. I am sure we will all be happy to comment.


Does this mean I can eat peanut butter?

I don't eat red meat, and try to eat as plant-based a diet as possible. that is why the fact that I'm now supposed to cut broccoli, spinach, soy and even strawberries is such a blow.

I have the following data-wise, what on earth does it all mean though?

2008 April 16
TRAK <5 (0 - 9)
ATPO: 484 (0-34)

2009 january 7
TRAK <5
ATPO 128
CHO 3.48 (3.5 - 5.1)

Many thanks for all your help btw.


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## CA-Lynn (Apr 29, 2010)

I want to point out that it would be wise to take care of yourself prior to having kids, even it means taking pills or having surgery.

Think about the last airline flight you took when the flight attendant told the moms in the audience to take oxygen first and THEN give it to the baby. Good, solid advice.


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## susie1611 (Nov 10, 2012)

CA-Lynn said:


> I want to point out that it would be wise to take care of yourself prior to having kids, even it means taking pills or having surgery.
> 
> Think about the last airline flight you took when the flight attendant told the moms in the audience to take oxygen first and THEN give it to the baby. Good, solid advice.


I know people who are on Carbimazole and yet gave birth to two healthy children. You make me not wanting to have my thyroid removed and then take medication for hypothyroidism for the rest of my life sound selfish and irresponsible. I don't see how taking that medication for ever is going to be potentially better for my future children than dealing with an overactive thyroid instead of an underactive thyroid. your post was just a bit hurtful.


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## CA-Lynn (Apr 29, 2010)

Good grief! I don't make you do anything. Any emotions you feel as a result of my post, which presented opinions based on facts and experical experience, are on you, not me.

Thyroid medication is very benign in the grand scheme of things. And there are LOTS of women who have taken it and gone on to have kids without issue.


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## susie1611 (Nov 10, 2012)

CA-Lynn said:


> Good grief! I don't make you do anything. Any emotions you feel as a result of my post, which presented opinions based on facts and experical experience, are on you, not me.
> 
> *Thyroid medication* is very benign in the grand scheme of things. And there are LOTS of women who have taken it and gone on to have kids without issue.


are you talking about Carbimazole (ie thiamazole) now? you did see my thyroid history, right? you are aware that I am not just leaving this untreated?


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## susie1611 (Nov 10, 2012)

Andros said:


> Firstly, to my knowledge there is not such thing as permanent remission. Or at least I have never been told of it from a credible source.
> 
> It would be in your best interest to have some antibodies' tests run.
> 
> ...


I've got all my records now from 2008 and the endo did make the diagnosis of Graves disease (if called Basedow disease in Europe) and you could see my ATPO results. My question would be - I didn't really have bulging eyes or anything wrong with my eyes back in 2008 and maybe I'm just imagining things now, but they are more red now and while I know that only 1 in 3 patients have graves ophthalmopathy, is it something that I may still develop? I know there's no point worrying but I can't help it and just been crying my eyes out over this. Eyes being the window to the soul and all that, is this the next big blow after losing my slim body and the ability to focus on any mental tast that I'll have to cope with, really unattractive eyes as well?


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## susie1611 (Nov 10, 2012)

Andros said:


> I certainly do not advocate eating bacon; I don't eat processed meats at all. Ever.
> 
> Good for you about the peanut butter!
> 
> If you want us to look at your 2008 antibodies' tests, please post them w/the results and the ranges. I am sure we will all be happy to comment.


and another query please:

in 2008: around 4 weeks of 40mg produced: TSH 45.670, FT4 6.970 
in 2012: 2 weeks 20mg, 3 weeks 10mg: TSH 16.2, FT4 6.4

with a relapse - are you likely to respond to the same dose of medication identically?

Also FT4 is the same, yet tSH is so out of kilter. why? FT4 is the better indicator, is it?


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