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Hi all,

i am a newbie, this is my first post.

i am not usually part of forums, but i have been researching thyroid issues and thyroid surgery and i have arrived here !

my story really started in january last when my parents were over for a visit. (my parents live in a different country , i don t see them very often). My mother how had her thyroid removed about 15 years ago (aged 58 or so because of a benign nodule) noticed that i had a very big neck and told me "you should really have it checked out". i thought nothing of it, and went on my daily life .

about a month later , i started having issues with sleep, not able to sleep, waking up at night ,with a pressure feeling in my neck, i also woke up one night with pain on the bottom of my neck. especially lying down the pressure was terrible and on one side the pressure seemed to be worse . i also had issues with nightime palpitations and thirst first thing in the morning .So i eventually decided to go to a GP.

the doctor felt my neck and said i had a "goitre", ran some bloods and asked me to have a xray and an ultrasound. i went privately for those as i did not want to wait in the public system.

the xray came back clear but the ultrasound came back with a category U5 nodule ( see more about nodule categories here ( https://radiopaedia.org/articles/ultrasound-u-classification-of-thyroid-nodules) on the left and a couple of category U2 on the other side . i was then referred on to a private endocrinologist.

the endocrinologist said my bloods were normal, although i still have my doubts in that regard ( see results below), but said the nodule on the left was U5 and because of this we needed to have a FNA on it.

the result of the FNA returned "undetermined" .

i was then refered on to an ENT for thyroid surgery, who has scheduled a left lobectomy on july 27th but has pretty much told me if you want to have it all removed left me know , but that he would not make the decision for me or the decision would not be made on the day/table. he did mention my thyroid was swollen on both sides . he seems to have a very good reputation .( but not much of a talker )

in the meantime, another of the Gps in the surgery seemed to think i may also have sleep apnea. given my problem going to sleep and staying asleep and general tiredness i feel/ somnolence during the day ( i do work in front of the computer all day that won t help, and i have 2 toddlers who wake up at night also). My father has sleep apnea , so he thinks i may have it also. so i was reffered to a breathing consultant. i am seeing him on monday for results of sleep studies .

however, i have looked into this and although rare, thyroid can cause sleep apnea i think.. so i wonder , is this all related after all ?

i am quite confused at the moment, i do not should i go ahead with left lobectomy or request it all gone ? i also had an ovary removed a few years ago, and already have balancing issues for hormones, i have night sweats ad hot flushes like i was menopausal, but i shouldn t be yet , i m 38, the bloods say i am not menopausal, is that again due to the thyroid..? would hormones be easier to balance with all the thyroid gone ?

what bugs me the most is that the ent surgeon leaves the choice to me? how do i know what to do ?

if i am honest,. the pressure has eased a bit since i went to the gp originally, but i am concerned about leaving half of it in there ? i wonder if i should do the whole shabang and be done with it!

i have asked the gp for an opinion, she is to ring me back next week.

my bloods are :

13.05.2014 tsh 0.26 fT4 14.0

05.02.2016 tsh 0.63 fT4 11.7

15.04.2016 tsh 0.98 fT4 12.7

28.02.2017 tsh 0.66 fT4 15.43

The range for tsh is 0.27-4.20

The range for free T4 is 12.00 to 22.00

what would you do ?

thanks

cascais

ps:i have also had issues with low iron post pregnancy in 2014 and post natal depression, although i am not sure if there any relation...
 
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Could you please edit your post and include the reference ranges for your blood work?

Did they test thyroid antibodies?
 

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Discussion Starter · #3 ·
Hi joplin1975
Thanks for your reply
I am not too sure if I can edit this right now i am on an iPhone at the moment . I ll have to try from work on Monday
As far as I can see on the blood work antibodies we're not tested
The range for tsh is 0.27-4.20
The range for free T4 is 12.00 to 22.00

Kind regards
Cascais
 

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So your free t4 looks hypo but you TSH looks good, perhaps borderline hyper. I think you've got antibodies fiddling with your results.

If I were you, I'd ask to have the following tested: TPO, TSI, and Tg/TgAb.

If any come back elevated, I'd get the whole thyroid out. The other half will likely always cause antibodies and that makes dosing difficult,
 
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Discussion Starter · #5 ·
Thanks joplin1975
I was actually thinking the same - having the bloods redone . They are basing this on bloods from the end of February - surely this should be based on recent bloods.
There is a thing in the blood work called triglyceride I am not sure if that's the same as tg/tgab . The triglycerides come back as 1.16 in April 2016 and 0.78 in February 2017 (range 0.50 to 1.70) . Other ones not in the list at all, but I think you are right they should have checked. Surprised the endo didn't order his own blood work...
I am due to this the sleep consultant today so I ll ask him what he thinks too.
Kind regards
Cascais
 

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That's related to cholesterol, not your thyroid.

Just gather as much information as you can so you can make an informed decision.
 

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Discussion Starter · #7 ·
Thanks joplin1975 I am going to wait until I talk to the gp later this week. I am planning to ask her to redo bloods and test the antibodies also so I can make a more informed decision.
On another note the sleep consultant does not think I have apnea he says I have mild snoring and has recommended some devices to help with breathing at night time but I am going to wait until the thyroid is done before looking into that any further
 

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Discussion Starter · #8 ·

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Discussion Starter · #9 ·
I asked for my bloods to be redone to have a better idea of what to do re surgery. And here are the results I had
Tsh 0.77 range 0.27-4.20
Free t4 12.16 range 12.00-22.00
Tpo antibodies <4.0 range 0.0 to 25.0
So I am told again all is normal by the gp

In the meantime I had my eyes checked by optician and from looking at the back of my eye and knowing nothing else of my history she said -have you a thyroid issue ? She said she thinks I have mild "proptosis" ( usually associated with thyroid Eye disease or Ted) and she can she my eye bulging out if I look down). Nobody has mentioned ted before (gp,endo). My eyes get very tired in the evening and dry and I have had episodes of blurred vision ( not many) but I do need glasses for working on computer ( I use the computer all day). I am collecting the glasses on Thursday. I haven t discussed this with the gp yet. Should I mention it ?

I have been leaning towards a total tyroidectomy decision anyway but since this latest opinion I am even more worried that there definitely something else going on other than the nodule.
What do you all think ?
Anyone any experience of ted symptoms?
Thanks for your support so far
Cascais
 

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Discussion Starter · #10 ·
Oh and I have been having a bit of a sore throat coming on ... but for a week now and it hasn't progressed into a full blown cold or sore throat which is kind of unusual for me.
 

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It's odd that you have low free t4 and low TSH too. Add in the TED, and yes, I think you should have a total. It will clear up a confusing situation.
 

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If you have any eye involvement at all, I would go for the total. It's better to not leave a half behind if your eyes are already having problems.
 

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Discussion Starter · #13 ·
thanks ladies,

i am thinking of returning to doc anyway to have this throat checked out (still painful) and also i wanted to show her the pics from the back of the eye from the optician to see if i need a referral to an eye consultant (you need a referral for everything here) .

but yes i am every day closer to the conclusion that i need the total thyroidectomy. i still have a couple of weeks to make a decision but i don t really want to debate it any further in my head . I am a lkitte worried of course aas anyone would before surgery. I hope it's the right decision and that it will go ok . (and that i stabilise on hormone replacement quickly)

Anyone know who is supposed to give you the prescription after surgery and follow you up ? is it the Ent surgeon ? or the Endo ? or the GP? (i know i get a 2 week review with the Ent but regarding repeat labs and medication, i know nothing of the follow up).
 

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It really depends on your doctor and how they handle your care.

My surgeon, who I absolutely loved, always said since he took my thyroid out, he's make sure I had meds and care set up after surgery. Some surgeons just want to do the surgery and then pass you off to someone else for care. Be sure to ask that question.

Also ask how many thyroid surgeries the surgeon does per year. You want a "high volume" surgeon who has loads of experience. Make sure they use steri strips and glue or stitches to close the wound. Do not use a surgeon if they intend on using staples. Ask how often they have complication rates with voca chords or parathyroids. It should be very very low. Ask if they use a drain (some do, some don't, but no one wants to wake up with an unexpected drain in their neck).

Thyroid surgery is pretty easy if you have a good, skilled surgeon. It makes a lot of sense to ask loads of questions and do your research.
 

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Discussion Starter · #15 ·
Thanks for your advice Joplin,

i have asked most of those questions already. this surgeon has mentioned 150 surgeries as a number , I'm not sure if that's total or on a per year basis, but he is a consultant in several hospitals . it's a small country so it's difficult to judge what the number should be.

i happen to know the consultant from name/reputation as he has operated and treated other family members.

he will be using stitches . He did mention that some people have complications re vocal chords ( no numbers), but he did said they were very few and that when it does happen, most of it is recoverable. he also mentioned a sore throat straight after surgery from the breathing tube. apparently there's a chance in 6 for this to be malignant, so it's quite low. no mentions of a drain or the parathyroid glands, but i 'll ask about the drain on the day..
 
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