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Post Surgery Problem and MEN testing - possible goitre?

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Post Surgery Problem and MEN testing - possible goitre?

Post by Tigerlily on Thu Mar 19, 2015 11:29 am

Hi Everyone

My post-surgery improvements have been many and it's now 3 months since my operation. My brain is much less confused and a number of my general aches and pains have disappeared, as a real bonus was that I seemed to have had a neck lift at the same time, as my neck area was smooth and sleek.

In the last week or so, however, what looks like a fluid-filled area has appeared directly under my chin, and the swelling on the right side of my face/jaw/neck that I had hoped would resolve after surgery seems to have returned. I look a bit grim at the moment.

Did anyone who has had neck surgery  also have this problem?

Quick update: as I had 3-gland hyperplasia, I asked to be referred to the endocrine genetics clinic at Addenbrookes. I saw Dr Park and Dr Helen Simpson there recently and they agreed to test for multiple endocrine neoplasia, as I have other lumps and bumps. They will also test for hyperparathyroidism jaw-tumour syndrome. You don't actually have to have any sort of jaw tumour to have this, apparently, but if you have had hyperparathyroidism and uterine fibroids, then HPT-JT is a possibility. (What an odd combination that is!)

As MEN2 can show up as a type of thyroid cancer, I'm a bit worried about this swelling under my chin, It's not actually over my thyroid area, but just above it (under my chin) and feels more like fluid to me. But when I swallow, the muscles are very tight and it feels as though something from there could actually jump into my throat. Bit dramatic, I know.

As my thyroid hormones all seem to be out of kilter since the operation (see below), it could perhaps be a goitre, so if anyone has experience of this, I'd be pleased to know if my description fits it.

TSH   4.72
FT 3   9.90    I take 20 mcg of T3 only, so this will be high - range is (3.95 - 6.Cool
FT 4   4.90    Ditto so this be low - range is (12-22)


Love to All from Tigerlily xxxx

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Re: Post Surgery Problem and MEN testing - possible goitre?

Post by Admin on Thu Mar 19, 2015 12:25 pm

Hi Tigerlily

I don't want to spoil your T3 party, but there are long-term risks from over-medication.
The most common risks that are often mentioned are atrial fibrillation and osteopoenia/osteoporosis.

If you need to have your FT3 at this level to feel good, it suggests that your T3 is not being absorbed very well at a cellular level and maybe this is an area worth further investigation.

I have had lowish FT3 sinve my hypoT diagnosis and I have found that a T4/T3 combination works well for me, but everyone is different.

Another thought.....
Are you taking your T3 on the day of the blood test?
if so, this will give a false high level.

Edwin
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Re: Post Surgery Problem and MEN testing - possible goitre?

Post by Hadleigh on Thu Mar 19, 2015 12:28 pm

Its not a goitre in the area you describe, a goitre is on the thyroid so any swelling would be lower down. I had one when I had Graves yonks ago, thankfully not too big.

Nelly
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Re: Post Surgery Problem and MEN testing - possible goitre?

Post by Tigerlily on Thu Mar 19, 2015 12:45 pm

Firstly, thanks Nelly for the heads-up re the goitre. The thyroid itself is not swollen so I'll investigate the fluid angle.

Secondly, Edwin, I'm taking less T3 than the endo actually prescribed! She recently told me to take another 10 mcg of T3 around lunchtime! (Like an endo might advise you taking more T4 if your TSH is depressed??) But I resisted increasing the T3 because I'm much less tired now since the surgery, and when I did take an extra 10 mcg of the T3, I was going like a train and couldn't sleep (but still didn't feel tired the next day even when I was up half the night).

This is the same endo that couldn't recognise primary HPT from the biochemistry. I have had my doubts about her for some time. Also, I have seen some research papers that suggest that hyperparathyroidism can be sitting behind and being masked by seeming hypothyroidism - which gave me pause for thought.

Thanks for the reminder about not taking the thyroid hormones when having a blood test. In case that is what I might have done last time (not 100% cured then in the brain department, perhaps!), I'll get a blood test form today and have the test repeated.

Thanks for your input, Edwin. What do you think about the idea of coming off the T3 for a while (so, not taking anything for a week or so, or longer?) to see what my true values are now after PTH surgery?

Tigerlily x

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Re: Post Surgery Problem and MEN testing - possible goitre?

Post by Admin on Thu Mar 19, 2015 4:22 pm

You are very lucky to find an endo that supports the use ot T3.  They are very rare.

I certainly would not come-off the T3 - better to make changes in increments of 5mcg.
10mcg T3 is quite a large step - equivalent to between 30 and 50mcg T4, so I am not surprised that you noticed such a difference with the additional 10mcg.

As you have clearly gone past the first hurdle of getting T3 prescribed, how about trying to change to 5mcg tablets (which is what I take)?
Your endo can specify bottles of 100mcg tablets manufactured by Perigo/Paddock Labs.
They are imported from the USA and are more expensive, but available within one or two days of ordering when my prescription reaches Boots pharmacy.

Regarding your true levels, I am afraid it is not as simple as relying on the blood test to indicate if your hormone replacement dose is correct.
The levels may provide clues about whether you are under or over medicated, but, in practice, the correct level of medication is not what is shown in your blood levels, but, more importantly, when you feel that you no longer have hypo or hyper symptoms.
I appreciate that this can be difficult when you have other problems where there is a cross-over of symptoms, but a process of elimination can work over time.

In my case, I was taking 20mcg T3 along with 100mcg T4, but I found my sweet-spot on 10mcg T3 (with an extra 5mcg when I do cardiac rehab exercise) and 86mcg T4.  However, that is now, it will change when the weather gets warmer, or colder, or if you increase/decrease your daily physical activities, becasue your thyroid hormone is the driver for your metabolism.

Edwin
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Re: Post Surgery Problem and MEN testing - possible goitre?

Post by Tigerlily on Thu Mar 19, 2015 5:35 pm

That's a lot to think about, Edwin, but I really appreciate your taking the time to explain it.
I have the blood test forms now, so will have the blood taken tomorrow without taking the T3 beforehand and see what the results bring up, as a starting point.

Hope you're getting back on an even keel yourself now.

Tigerliy x

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Re: Post Surgery Problem and MEN testing - possible goitre?

Post by Admin on Thu Mar 19, 2015 6:46 pm

Unfortunately, still struggling to return to anything like normal :-(
My kidney function dropped further when I lost blood after the pacemaker was fitted, and it does not look like it is recovering yet, as I have had some fluid retention, the worst of which is in my lungs.

Edwin
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Re: Post Surgery Problem and MEN testing - possible goitre?

Post by Tigerlily on Thu Mar 19, 2015 6:54 pm

Rest up for a while, Edwin, and I hope you'll be feeling better soon.

Tigerlily x

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Re: Post Surgery Problem and MEN testing - possible goitre?

Post by Amanda Lynne on Fri Mar 20, 2015 7:22 am

Edwin
Sorry to hear you are struggling with your health, sending you love for your recovery.
Amanda x
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Re: Post Surgery Problem and MEN testing - possible goitre?

Post by Admin on Fri Mar 20, 2015 11:15 am

Thank you ladies.

Edwin
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Re: Post Surgery Problem and MEN testing - possible goitre?

Post by Little Audrey on Sun Mar 22, 2015 2:04 pm

Well, once again, I was feeling sorry for myself, until I got on here and saw that my wonderful friends are still suffering so badly. Sad My goodness, what is happening to us all?

Tigerlily, I'm so sorry to hear about the lump under your chin. The only fluid-filled lump I had was the one at my incision site immediately following surgery. That lasted about 3 months. I am unsure what your lump might be caused by. Surely it would not be from the parathyroid surgery at this point, and it sounds like it's up too high to be caused by that anyway. I am puzzled. I will do a bit of research the first chance I get to see if I can help you out with this.

As far as the thyroid goes, yes, it sure is confusing!! Everybody keeps telling me my free T3 needs to be higher, and I agree, but I really doubt it any of my doctors will agree that my medication should be raised, since the TSH is already so low. I understand that the TSH is a pituitary hormone that is supposed to tell our thyroids the amount of hormones to secrete, and I understand that taking Armour (T3 & T4) will suppress TSH levels, but I still won't be able to convince my doctors to change their way of thinking. I am going to run it all by my nephro in a few weeks. If anybody will be able to understand this, it will be him. He is the only one of my doctors who does not have a problem with my TSH being at <0.06, because the free T3 is in the normal range at 2.7, which, as mentioned earlier, still seems to be a bit low.

Edwin, I am also very sorry to hear you are still struggling so!! I was hoping by now things would be improving greatly for you. This is very disappointing. I know it is for you too. Why can't our bodies just do what they're supposed to?! I was just diagnosed with another problem, but it is no big deal. It is treatable. I am going to post that very soon. I do hope things start improving for you VERY soon!!! I'll be praying for you all!!

Audrey

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Re: Post Surgery Problem and MEN testing - possible goitre?

Post by Tigerlily on Sun Mar 22, 2015 6:57 pm

Thanks, Audrey - I agree that the swelling is nowhere near the surgery site and Nelly says it is not a goitre in her view, so any input you might have would be much appreciated.

No rush, though, just as and when you come across something that might be relevant.

Love to you from Tigerlily x

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