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Old 08-30-2011, 10:54 AM   #1
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update

so ive been to the docs again today who has now diagnosed me with having Graves disease as well as my overactive thyroid, ive to have my bloods done tomorrow to check my thyroid levels

Ive just felt utterly horried and down in the heart feeling as tho this will never get better im so fed up now im 4 weeks in and my doc says that it could take anything up to 2 yrs for my thyroid levels to adjust back to normal he also went on to saying that my Goitre is swallen and they wont really do anything other than make my thyroid go underactive cause im still young and may want more kids!! ive got flippin 3 already

I really dont know what to do any more, this is driving me around the bend!

I feel as tho the doc doesnt know what he is saying or i dont know which directon im going

Please help me

 
Old 08-30-2011, 11:07 AM   #2
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Re: update

I am not going to be able to provide an adequate response via a phone text here. I will reply in depth this evening after work and my kids pass out. One is an insomniac.. So it can take a while. Needless to say get copies of all your blood work. Research and do not rush into an RAI treatment regime despite being done having children.

If you have copies of your blood work share the results with ranges. It will help us help you. Also have you consulted an ENT? Given the goiter and issues an ENT would be a great person for a second opinion. Also look into antithyroid medication before even considering an RAI ablation or thyroidectomy. How was Graves confirmed? Thyroid antibody testing or RAI uptake scan?

Yes I am fishing. The mire information I have the better my answers will be.

In the mean te search threads by mkgbrook look over my thyroid care and concerns series. There is one dedicated to GRAVES and RAI. The others are packed full of information as well. You are not alone. Heck in my family alone you have 6-7 Graves sisters. ;-). I promise to check in with you later.

Sincerely,
MG
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Old 08-30-2011, 09:08 PM   #3
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Re: update

clare1982;

They are asleep! It is a miracle!

so ive been to the docs again today who has now diagnosed me with having Graves disease as well as my overactive thyroid, ive to have my bloods done tomorrow to check my thyroid levels

Graves is the autoimmune hyperthyroid disease. This is where your own immune system produces TSI - thyroid stimulating immunoglobin and TRAB and antibody. These work as slave drivers to your thyroid. Even when your pituitary gland does not produce TSH (thyroid stimulating hormone). Your immune system produces the TSi to takes its place. This results in your thyroid continually spitting out T4 hormone in an effort to make this demand.

How do you fix it when your body has decided to attack itself? Well you have three main options.
1) You can use medication (anti-thyroid medication - ATDs) to slow down the production of T4 by inhibiting both TSI and TSH production. This is a slow process that requires titration just like hypothyroid patients experience. You start with dose X and have to wait for your blood chemistry to equalize. This takes about 2 weeks. It takes an additional 2-4 weeks for your symptoms to catch up to your blood chemistry. So every 4-6 weeks you should test your blood FT3 and FT4 levels and adjust meds accordingly until your are optimal in range. What does this mean? Optimal is 60-80% of normal range where your symptoms GO AWAY! Yes they can go away! Exciting huh!

2) Thyroidectomy - remove the thyroid and then titrate as above with T4 supplementation and T3 supplementation when necessary.

3) RAI Ablation - This is the gamblers treatment in my opinion. In many cases you take a large dose of RAI and it fails to kill the thyroid completely, but damages it irrepairibly. In these cases you have erratic out put and hypoT medication becomes difficult. Then there is the case where too little RAI is used. This tends to **** the thyroid off in my experience. THis happened to family members twice. The end result was thyroid storms and more. Solution - thyroidectomy.

As a family we prefer to try the ATDs first. If this doesn't work we go for the thyroidectomy. RAI has given us nothing but trouble and an increase in issues like thyroid eye disease.



Ive just felt utterly horried and down in the heart feeling as tho this will never get better im so fed up now im 4 weeks in and my doc says that it could take anything up to 2 yrs for my thyroid levels to adjust back to normal he also went on to saying that my Goitre is swallen and they wont really do anything other than make my thyroid go underactive cause im still young and may want more kids!! ive got flippin 3 already

This confuses me. It is like your MD is saying that they plan on making you hypoT and keeping you that way. That they are incapable of treating you optimally. If you get a thyroidectomy are the so incompetent that they can not treat someone with a dead thyroid or removed thyroid. Heck I got pregnant and had a beautiful baby girl with a dead thyroid. True I had to test my thyroid levels every TWO weeks my first trimester and I was bumping my dosage every two weeks to compensate. But I was at an optimal thyroid supplement level by the middle of my 2nd trimester. Note to your MD, you do not want to be pregnant in a hypoT state. If you are then there is a chance that you will cause mental retardation and more to your developing fetus.

As to treating the goiter, when your thyroid is calmed it will be less inflammed thus less swollen. Right now the thyroid tissue is overworked and inflammed due to over use. Think of it as how your muscles feel after hours of working out. They burn and get tight. Well what happens when you over work muscles? Well you can tear muscles and get muscle strain. This is what is going on with your thyroid it has gland strain because it is being made to work out and then work out more. If you can give it a break the swelling will go down.


I really dont know what to do any more, this is driving me around the bend!

I would see if you can get an ENT consult for the thyroid goiter. Maybe you can get better treatment through a secondary route. Also insist on ATD treatment first and REGULAR blood work checks. Every time you get blood work drawn insist on a copy for your records. Then SHARE! We will give you our 2 cents.

I feel as tho the doc doesnt know what he is saying or i dont know which directon im going

Given your side of the story I question this guys competency. It can take two years to reach an optimal treatment state. There is no quick fix when it comes to artificially regulating one of your most complex endocrine systems. This maybe what your MD was trying to say, I wasn't their. But I concur on the no RAI. Go for the reversible treatment first. ATDs. If those do not work.. well if you are going to kill the thyroid why not remove it to ensure that it does not come back to bite you in the proverbial backside.

Hope this helps. With out copies of your lab work results and ranges I can not give any truly specific advice.

Sincerely,
MG
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Old 09-06-2011, 11:36 AM   #4
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Re: update

Dear MKGBROOK

Id like to say a massive Thank you hunnie that has helped a tonn i really feel that this has explained my symptoms hun and why im feeling sooooo YUK lol i really havnt a clue with all this really! ive been to the Doctors today and got my blood results for my Repeat TFT and although the results have come down im still over my results are as follows

First lot of blood work

Free T3 48.8 (3.9 - 6.8)
Free T4 100.0 (11.0 - 23.0)
TSH 0.02 (0.35 - 5.00)

after having my meds Carbomazole and propranolol

Free T3 9.8 (3.9 - 6.8)
Free T4 15.3 11.0 - 23.0)
TSH 0.02 (0.35 - 5.00)

my Doc has said that she wants my thyroid to go underactive and then she will give me meds to make it come back up im not sure if this makes any sense hun to you im still feeling really quite unwell its now makin me feel like its gonna go on forever i know it wont but i does feel that way!!

Thank you again for your help and advice
Clare x

 
Old 09-06-2011, 12:04 PM   #5
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Re: update

I am glad that I could help. My aunts would kick my tail if I gave bad hyperT advice or didn't respond equally.

I am going to calculate your percentages so that you can see how bad you were off and how much you have improved.

First lot of blood work

Free T3 48.8 (3.9 - 6.8)
48.8-3.9=44.9
44.9/(6.8-3.9)=15.4827
15.4827*100=1548%

Free T4 100.0 (11.0 - 23.0)
100-11=89/(23-11)=7.41667*100=741.667%

TSH 0.02 (0.35 - 5.00)
no need to bother with this result....

after having my meds Carbomazole and propranolol

Free T3 9.8 (3.9 - 6.8)
9.8-3.9=5.9/(6.8-3.9)=2.03448*100=203.45%

Free T4 15.3 11.0 - 23.0)
15.3-11=4.3/(23-11)=0.358333*100= 35.83%
TSH 0.02 (0.35 - 5.00)

my Doc has said that she wants my thyroid to go underactive and then she will give me meds to make it come back up im not sure if this makes any sense hun to you im still feeling really quite unwell its now makin me feel like its gonna go on forever i know it wont but i does feel that way!!

Well your T4 levels are already suboptimal or hypoT. This can explain your symptoms. You are riding the hypoT T4 horse and hyperT T3 horse at the same time. Unfortunately we only have one backside to ride properly with. You need to get the T3 in range so that you can start treating the low T4 levels. Your MD needs to make sure that your adrenal glands haven't burnt out and are capable of regulating T4:T3 conversion. If not supplementation with T4 will just drive you back hyperT in T3.

Thank you again for your help.

You are welcome.

MG
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Old 09-08-2011, 10:49 AM   #6
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Re: update

Hello again M G

Well ive been to the Endocrinologist and "what a waste of time" he didnt tell me anything apart from what i already know"

He has lowered my dose of Carbimazole from 40mg to 30mg and advised if i start to feel poorley adjust it and go back to 40mg. He never mentioned anything about the Propranolol that i am taking

They want me to have blood work repeated in 6 weeks time in which case that means that it will work out at 8 weeks since the last set of blood work!!

He didnt say anything much about my Goitre being swallen, nore my headaches, nore my sore throat *sigh

I need to see him again in 6 weeks time for a follow up appointment, im alright to go back to work ( which is great)

i just dont know im very confused still and im still non the wiser, i asked about a scan on my thyroid but was told this is not needed

Ive no idea im a little bit more confused now before i went in to see him i also wanted to know what my plan of care was going to be but i dont feel as though he was interested really

All he said is oh well your levels have dropped quite nicelly!!
well i know that DOH

Im frustrated
Thanks xx

 
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