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High TPO

Hi I am new to this, so please bear with me.  I found a lump on my thyroid, which my doctor confirmed is a goitre.  they run in families, I am told, and my mum had Hashimotos disease and had her thyroid removed 25 years ago.  I had bloods done which all have come back normal, except my TPO results which are really high (apparently).  My doctor is sending me for B12 bloods and referring me to an ENT specialist as I have had a sore throat for about 6 weeks. He is not sure if this is related to my goitre but hopes to get it all checked out first.   I am really worried as I have read everything from thyroid cancer to hashimotos.   I feel absolutely fine - okay my skin is a bit dry and I struggle with my weight.   I am really worried as to what is happening and going to happen.   Could anyone give any advice.  Also my doctor said that taking the thyroid out is rarer these days and there are other things they can do...like what?  this is all so confusing and worrying
many thanks
Ramoon x
19 Responses
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Avatar universal
I am scheduled for a total removal of my thyroid. I'm scared but I think it's best...I have two large nodules. One on each side. I've had these nodules for about five years or more. They have grown since my last ultrasound...the doctor thinks it's best to remove the whole thyroid. I'm also concerned about the medicine you need to be on for the rest of your life. I'm concerned about the side effects. I know everyone is different...I'm praying everything will go well. Is there anything to be concerned about?
Helpful - 0
Avatar universal
thanks for coming back to me and yes  i will set up another post. you never know.  The new GP who has got things moving worked at the hosptial and knows the endo team. this particularly endo is brilliant (apparently) so fingers crossed.  I just hope they can do something.

thanks again and will let you know how it goes.
Helpful - 0
Avatar universal
That IS a long time...so sorry that you've had to wait so long for this.

I don't have personal experience with facial pain, but I know that when the thyroid swells, it can press against nerves and cause neck, ear, head and facial pain and cause voice changes.

You might start a new thread asking other members for their suggestions.  That way you could get the facial pain into the headline and attract members who have experience with it

Let me know how your appointment goes.  Best of luck...hope you like the new endo..
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Avatar universal
sorry for the absence but i have finally got an appointment with the endocrinologist on monday.  Luckily saw another doctor who went balistic that i hadn't been referred to the endo depart with such massively high antibodies - at last...only taken a year!!!!!!  the scan showed a diffused thyroid.   Have a question - have you or do you know if anyone has suffered with facial neuralgia symptons as a sympton of hashis - i have pain in my facet on and off for years but it has got really bad and i have just come across a paper with a link????????  any advice.
many thanks
Helpful - 0
Avatar universal
Thyroxin would be the medication.  If you have a good thyroid endo, you will probably be prescribed meds even if your thyroid labs are "normal". i.e. within reference range.  The fact that you have Hashi's will most likely help your case.  However, some doctors can be unbelievably stubborn and once they get you anywhere into range, they stop treating regardless of symptoms.

I was diagnosed hypo before my Hashi's was diagnosed...or I should say my husband, I and Oprah diagnosed my hypo...long story!  It took me a long time to get it under control because my PCP (former) started me on much too high a dose, and I have a heart arrhythmia and am very sensitive to meds.  So, I had to start very low and increased in baby steps for over a year until I got to the correct dose.  I have been on a stable dose since January now (knocking on wood!), and my endo and I think my thyroid might be "dead" at this point.  Good news since I'm on 100% hormone replacement at this point and things should be a lot more stable.

However, lots of people have a much easier time getting on meds and adjusting them...I am definitely an oddball as are most of us on the forum.  We wouldn't be here if we had been textbook cases!

Good luck getting to see an endo.  
Helpful - 0
Avatar universal
many thanks for coming back to me so quickly.  Yes it was the ENT specialist who has ordered the scan.  The appointment has come through for Friday 25th September, so not long to wait.  I will then probably go back to the doctor to push for the Endo consultant.  The ENT consultant did say that the Endo guys can give tablets to reduce the goiter - so assuming he mean't thyroxin.  Having read various reports on the internet, there does seem to be conflicting info as to whether they prescribe thyroxin when your lab results are normal?  but will have to see.

Thank you for reassuring me re the goiter seemingly reducing every so often.  Today it feels smaller again!   From talking with sisters (as sadly my mum is now dead), mum had a lump in her throat for years and it got very large causing her to choke.  that's why she was rushed in and had a total thyroidectomy straight away - so fingers crossed, I am not there yet.

Can I ask how your Hashis was diagnosed and how you control it?

many thanks
xx
Helpful - 0
Avatar universal
Don't be the least bit concerned about a thyroid ultrasound.  It's totally non-invasive and completely painless.  They put some gooey gel on your neck and look at the thyroid with the ultrasound.  This will tell them a lot about your goiter and any nodules you might have, which many of us with Hashi's do.

No, you're not going mad.  Suppose your ankle is inflamed.  One day it might be swollen quite a lot, the next day not so much, and then back to swollen again.  It's the same with your thyroid.  It can be affected by other hormones (like when you have your period), it can be affected by overall health, it can even be affected by how good a night's sleep you got the night before, food, other meds (like penicillin), and the list goes on.

I have to agree that I think an endo would have been a better referral than an ENT.  Can you get your doctor to refer you again...this time to an endo?  You have Hashi's, so sooner or later you are going to need to find a doctor who will help you manage your hypothyroidism.  Is it the ENT who ordered the US?  I'd have that done since most endos will want to see that anyway.  But I'd save the follow-up appointment with the ENT on the scan and just make sure the results are available to your endo.

Best of luck.
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Avatar universal
thanks for the last response.  I went to the ENT specialist - useless.  He said my doctor should have referred me to the endocrinologist as they only deal with thyroids if they need to be removed.  He has booked me in for a throat scan???????  has anyone had an ultrasound on their neck and what happens.   Also, don't know if you can help, or anyone else, can a goitre get smaller and larger at certain times of the month?  has this happened to anyone.  mine always feels fuller just before my period? then seems to be smaller after?  or am I going mad.
I am so sorry to keep asking such questions, but this is all just so new to me.  The ent guy didn't confirm whether it was hashimotos so no further forward at all.
any advice is gratefully received
xx  
Helpful - 0
Avatar universal
A goiter is just an inflamed thyroid.  So, think of it as any other part of your body that suffers from chronic or prolonged inflammation...some days are good, others not so!  I think that's what you're experiencing.  I don't know what explains this...food, weather, exercise (or lack thereof!)?

My opinion on diet is just to eat a well-balanced diet with lots of variety.  I believe in "real" food...stay away from pre-packaged, cook your own meals, etc.  I think the more basic you keep it, the better off you are.  Just my particular bias...
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Avatar universal
Many thanks for your comments and yes I will get a copy of my results so i can post them for advice.  One question - could a goiter go down with antibiotics?????? sometimes it feels smaller than the day before which seems strange.  again any advice would be welcome.  Also do any particular foods help or not help.

sorry to keep asking so many questions - hopefully one day I can give advice!!

many thanks
Helpful - 0
Avatar universal
Totally agree with goolarra and dani.  I also think you should prep yourself for dealing with your doctor and assuring that you get the treatment that you should by reading and understanding this article.  It talks a lot about the importance of symptoms and free t3 and free t4 levels, rather than TSH, as the determining factors for medication.

http://www.hormonerestoration.com/Thyroid.html  
Helpful - 0
Avatar universal
I agree with dani, get copies of all your results.

Don't let your jerky GP freak you out.  Most people with Hashi's have nodules and goiter, and they just monitor them to make sure they remain "consistent with Hashi's".

If you are now realizing that more of your symptoms might be Hashi's related, you should be on treatment.  Lots of times, we hear doctors say that labs are "normal" only to discover that testing was inadequate or reference ranges obsolete.  You may have to beat your doctor up a bit to get him to treat you with what he thinks are normal labs.  If that doesn't work, you need to find a doctor who understands Hashi's.

Don't let them make you suffer until your labs catch up with how you're feeling.
Helpful - 0
865758 tn?1285952904
Did you obtain a copy of ALL your reasults?  If not I would suggest doing so.
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Avatar universal
b12 results were normal as were my glucose levels. got an appointment with the ENT specialist in September. Sore throat got better after a course of penicillen.....it has now come back and they have put me on another course!!!   Didn;t see my normal doctor, and this guy was so flippant.  wasn't the least bit interested.  Said they would probably see if it was cancer - asked if he thought it was and he said, they rule everything out.  Now i am frightened - my own gp said that it didnt feel like a tumour and everything i have read, so far, points to Hashis.  Plus that's what mum had.   I can;t believe he was so flippant about something that could be so serious.

Reading people's comment on hashis does ring so many bells - symptons i have thought were other things.  Such as leg cramps, weak calf muscle, back ache, tiredness, heart palpitations......eek.

If you can give any advice at this stage or share any wisdom with me, I would be grateful.  Sadly my mum died 11 years ago (not from thyroid) so i can't ask her all these things.

any help, always grateful.
xx
Helpful - 0
Avatar universal
Hashi's does run in families.  So, the fact that your mother had it increases your odds.

If your TPOab was elevated, that would also indicate Hashi's.

If you feel good, then you are probably in the initial stages.  However, you will eventually need to be on replacement hormones. You should ask your doctor to order free T3 and free T4 along with THS.  Get in the habit of asking for a copy of all your lab reports for your records.  It's a really valuable thing to have later on down the road when you're trying to adjust meds.  You might also jot down a few notes about your hypo symptoms just prior to the labwork.

Keep up on your bloodwork (every four to six months if Hashi's has been confirmed).  If you start to have symptoms, don't wait, but go in for labs right away.

Best of luck with your ENT.
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Avatar universal
Hi there...thanks for the response.  Sadly no I don't have the actual numbers.  But he went on about one test that he did which shows if there is going to be a problem with the Thyroid - I think it was the TPO results - and he said mine were very high which means the thyroid is under attack and there will be a problem.  He sent me today for B12 bloods.  I also will have the letter to make an appointment with the ENT specialist.  He said he wanted me to see the ENT guy first as my glands under my neck are swollen and I have had a sore throat for weeks. He has put me on antibiotics for a week.  He hasn;t said its connected to my goiter.   It's all happened so quickly.   All i know is i feel really hot and clammy, have a sore throat, swollen glands and a goiter.   So not sure exactly what is going on or if these are connected.   Does any of this sound like the start of Hashi's - the fact that mum had it I suppose is a possibility.

Do let me kow if you can give an advice.

thank you
Helpful - 0
Avatar universal
Do you have the actual numbers for your other thyroid bloodwork?  FT3, FT4 (and their reference ranges) and TSH?  Too often we hear "normal" from doctors only to discover testing was inadequate or reference ranges used were obsolete.

Hashi's is my best guess at this point.  Removal of the thyroid for Hashi's is only rarely recommended in "dire" circumstances, e.g. the goiter is affecting breathing or swallowing. There is RAI (radioactive iodine ablation), which in effect "kills" the thyroid without surgery.  This is also only  rarely used for Hashi's, except in extreme cases. If it's Hashi's you will eventually have to be on hormone replacement.  

I agree with emmymatt, don't worry about surgery at this point...you're a long way away from it right now.
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Avatar universal
Hi there

many thanks for your comments.   I just wish i knew what it was.  I am never poorly and so this has all come as a bit of shock.  I still have nightmares having seen mum after her thyroid operation - I was only young and it has stayed in my mind.  My doctor has said that they dont take them out very often now.  So let's hope he is right.    I am having my B12 bloods done tomorrow as apparently there is a connection?   we shall see.

regards xx
Helpful - 0
932747 tn?1247616635
I cant speak for your labs because I really dont know the answers to that, but I just wanted to say that you shouldn't worry.  Most goiters are not cancer.  The doctors will probably send you for a few more tests, scans and things like that, just to follow up on the goiter.  But, seriously dont worry, untill they tell you to be concerned.  Either way, you are going to fine.  Stay strong, take this process in small steps.  Only worry about whatever step is right in front of you at the time.  Dont think ahead.  Right now you just a goiter and nothing else.  Your next step is to see the next doctor, only think about that right now.  Everything is going to be ok.
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