Re: Thyroid Thread - Part Deux
 

Thyroid problems run in my husbands family. His Mother, his uncles and he have thyroid probs.

My mother-in-law is 82 & had her thyroid removed well over a decade ago after developing a goitre. She is ....forgetful... & stubborn as a mule with a tendency to the grumps. She lives in the past somewhat but has always been that way really.

Husband is back in the UK right now checking out his Mom. He has discovered that she is simply not taking her meds. Yes. The meds arrive in one of those weekly day by day strips but she isn't taking them. No-one seems to be checking what tablets are gone from the strip. New strip arrives and she bins the old one. Husband has tried to chat with her about this but the result was mega grumps. She won't have help come in. We've tried that. She lives with her elderly brother , age 75, who has all his marbles but he hasn't been able to get her to take the meds daily either.

My question to all you who are very familiar with thyroid issues are what are the health risks here and what symptoms would present from not taking the meds long term when one has no thyroid.

I know I could google but really I feel you are the best people to know.

Husband knows that if his meds are off he gets a head fug, tired and irritable but this is more than that.

Re: Thyroid Thread - Part Deux
 

I wonder why she won't take them? I have been tested for my thyroid, just waiting on the results but if it is that, it will be a relief to feel better. I don't know what's worse the exhaustion, dry gritty eyes, no appetite, or the 'flatness' I feel.

Hoping that as it doesn't run in my family then I won't have it, it costs enough for my asthma mess, can't afford to have anything else wrong.

Hope she is ok, old people can be so stubborn:eek:

Re: Thyroid Thread - Part Deux
 

She forgets. Half the time she doesn't know what day it is. It's a vicious circle. I'm sure she never really understood just how important taking the pill was. We're very concerned. This has been going on a while.

Re: Thyroid Thread - Part Deux
 

:(

I wonder what happens when thyroid meds are not taken, I mean with insulin and diabetics its obvious but I wonder what happens when it comes to thyroid.:confused:

Re: Thyroid Thread - Part Deux
 

Exactamonte.

Re: Thyroid Thread - Part Deux
 

Essentially, if you don't take thyroxine at all & you have no thyroid, you will eventually die!
It is very serious. In your mil's case, she is probably taking it intermittently & whilst her levels are sub-therapeutic, they are probably adequate to keep her ticking along.

If I were your husband (& speaking as an ex community matron), I would be approaching her GP to discuss it. If nothing else, her memory issues need looking into & she could be having some help & support with that. She may not want a carer but may accept a doctor or nurse to assess the situation.

Good luck.

Re: Thyroid Thread - Part Deux
 

I'm waiting on my results, I had the test on wed morn. They said they would contact me if anything showed up. I'm having visions of bug eyes and goitres!!!

They would have called me by now as bloods only take 2 days to come back at our doctors although I don't know how long thyroid ones take.

Re: Thyroid Thread - Part Deux
 

There are thyroid tests, PP, and then there are thyroid tests. Make sure you have the full range as detailed on this thread and remember, bloods don't always tell the full story.

Re: Thyroid Thread - Part Deux
 

All I know is that he said he wanted to check my thyroid, I know there were other tests he did like calcium, potassium and loads of others but that's all I know.

Im so tired all the time, my eyes feel as though they have dried out and I'm aching and feel weak, I haven't even been to the gym as I can't do the weights.

I'm thinking I'm run down what with college and work :o

Re: Thyroid Thread - Part Deux
 

Ok. I think she is not taking it at all. The odd one here and there. She maybe took one tablet to show husband she was taking them. The weeks pill tab strip went in the bin with 6 tablets within it. I have no idea how long this has been going on but quite a while I suspect. Husband is not being pro-active but sluggish. They are rubbing off on each other which sounds madness I know.

Would you suggest social services or that approach to the GP if he can get to speak to someone.

Re: Thyroid Thread - Part Deux
 

Oops. Just seen that you mention approaching the GP. I'll tell him.

Thanks so much for the help.

Re: Thyroid Thread - Part Deux
 

He needs to be proactive & raise his concerns with the GP. Her bloods should be being monitored & if the blister packs are not working, they need to come up with some other solution. I suggest that your husband makes an appt to see the GP & has a list of his concerns to take with him. GPs are very used to this kind of thing & the GP is definitely the place to start. If any other services need to be involved, the GP can refer or advise.
Lots of luck to your husband, it's not easy dealing with cranky rels who don't realise there is an issue. Her memory problems may well be related to low thyroxine levels btw.

Re: Thyroid Thread - Part Deux
 

That's my feeling . I know how it effects husband when his levels are to cock. He himself says he feels a mind fug.

I'm rather hoping he'll get that done and get into see a GP

Re: Thyroid Thread - Part Deux
 

Hi Bevs.

Well, a few things. She's 82. Quite obviously if she hasn't been taking her meds for a long time, she's doing ok.
And when I say ok, she's 82 and had her op ten years ago. If she's not been taking her drugs regularly, she's a) still alive and b) a cranky ol' mule because she's not taking her drugs properly. However, she may just be a stubborn old girl anyway. It's hard to tell. Certainly lack of thyroid regulation can do that to you.

It's possible that also she may have had a partial thyroidectomy not a complete one, which would mean she still had a little bit of thyroid left... do check if it was total or partial.

Eventually, she will get worse and there's a kind of dementia which is linked to poor treatment of the thyroid. Well, it appears as dementia but it's not. My grandmother had it and the doctor was sure her illness was linked to her poor treatment..

If she's taking them intermittently then this isn't so bad. T4 (thyroxine) has a life in the body of about 7 weeks... but obviously not taking them at all will mean that her levels are low so she'll be feeling a bit crabby and forgetful.

Best time to take her T4 is at night, last thing with a glass of water on an empty stomach. This has been proven to raise the amount of T4 which is converted to T3 (the bit that enters the cells and makes her feel good) and it means she hasn't got anything to stress about during the day.

T4 can't be taken with cups of tea, calcium, iron etc because they all interfere with absorption, so my guess is that even if she takes them during the day, she won't be absorbing them all anyway as elderly folk will keep doing what they want in my experience. Usually they tell you to take your thyroxine in the morning first thing, before eating, wait an hour, then eat... don't take any vitamins or minerals with it or within 7 hours blah blah blah.
Quite frankly, I'm not surprised she's not taking them. Who doesn't want a cup of tea first thing in the AM when you're 82?

Quite often it's possible for thyroid to be present in both couples - research shows they attract each other, so please have her brother tested too. It's quite possible he's got the same thing. It's not a female only condition.

A talk from the GP may be the thing and encouragement to take meds at night. Easy then... just a glass of water on the bedside table and a pill to pop.


Hope that helps.

Re: Thyroid Thread - Part Deux
 

After a while you get a return to the old symptoms... backache, brain fog etc.

This sounds more adrenal to me PP. Thyroid failure is considered by many to be the end result of adrenal stress. Check out Dr Lam's adrenal site.

Re: Thyroid Thread - Part Deux
 

Thanks Tiddly Pom.

Yeh ! She display all the signs of dementia but from what is written here I think it's related to her not taking her meds. She doesn't really understand what the tablet does for her & what not taking it does to her.

Both her brothers and her son, my husband, have thyroid problems. The brother that lives with her takes his meds & goes for his blood tests, but is unable to encourage or remind her to take hers without getting an earful.

She was prescribed iron tablets a while ago when forced to the doctors but she doesn't take those either. Says they make her dizzy.

Re: Thyroid Thread - Part Deux
 

I've heard of Addisons disease if you stop taking steroids, is that a similar thing as I haven't been in preds for about a year now.

My eyes are so dry and feel like there is sand in them whic doesn't fit in with being knackered, I have so much to do I so do not have time to be tired like this. I did laugh when the doctor felt my throat and asked me 'can you swallow?' I wanted to laugh and nearly replied 'not if I can help it' :D

Oh well, no news is good news so looks like I'm not in the Thyroid Club yet which is good as being on inhalers is enough. My money is on the fact that I am not only burning my candle at both ends but I'm burning everything else as well.

Re: Thyroid Thread - Part Deux
 

Very funny

Re: Thyroid Thread - Part Deux
 

Not just Addinson's disease... adrenal fatigue... check it out. If you are burning the candle then it's to be expected, plus high levels of stress, which you've had, plus perhaps bereavement... so, y'know. You can treat your adrenals quite well yourself. Google for Dr Lam adrenal fatigue.

Re: Thyroid Thread - Part Deux
 

Went to get my results this morning and the doctor said it is pointing to 'Lupus' and has done a referral for more detailed tests. Arthritis, kidneys, thyroid, liver all OK just some other things that are raised and point to that.

I thought it was all in my head I really did but its not, but to be honest, I almost wish it had been thyroid. He has done an urgent referral to an immunologist, and given me letters/results to give to him.

I have heard of Lupus, my friend (elderly) has it in the UK and she is seriously ill with it, I am not like that but I dont understand if it is that, how I got it - in fact I dont understand much about it at all, he said something about my auto immune system or something - I cant remember exactly.

I have hidden this from my Dad as he will worry, the referral letter is in the boot of my car and Dad thinks I have a sinus infection:sneaky:

Oh well, I have lost more weight, my knickers are falling off my bum and I have an excuse for my fatigue.:o

And of course, it might not be that - Doctor reckoned there is no definite test for it only certain blood results and things that can give a strong indication.

Re: Thyroid Thread - Part Deux
 

Sorry to hear that PP. Good luck with your referral & next round of investigations:fingerscrossed:

Re: Thyroid Thread - Part Deux
 

Sorry to bump this thread back up, but I have had some more blood tests, having been tested for thyroid trouble about six months ago (and having been found to be fine). I had to go for ante-natal blood screening tests a couple of weeks ago (unfortunately I have since lost the pregnancy), but my GP phoned me and asked me to go in today. It seems that my TSH is slightly elevated (I think she said it was about 0.5 higher than 'normal') so I have to go back in about 6 weeks for a TSH, T4 and T3 blood test.

As far as I understand, TSH is secreted by the pituitary, so the fact that there are elevated levels means that the thyroid isn't responding to the effect of the TSH, and so more is released to try and stimulate it in to action. So I guess that it could mean that my thyroid is indeed packing up, as suspected six months ago.

Interestingly, the vitamins etc that I was short of six months ago (B's, Vit D and Iron) are all back to normal now, and liver/kidney function still normal, but despite watching my diet and so on, I am still feeling the same.

Re: Thyroid Thread - Part Deux
 

I'm so sorry I didn't see this sooner!! I had a TT in 2006 - not due to cancer but the outcome is the same... a big hole in my neck!! How're you feeling now?

Re: Thyroid Thread - Part Deux
 

So sorry to hear that you lost the pregnancy... hope you're managing to get your head around that. Have they mentioned any possible link between the pregnancy loss and a thyroid condition?

Yes you're right about the TSH - if its elevated it would mean (or should mean) that your thyroid bloods are low and its trying to boost them. Having said that, you/they should be going by how you're feeling rather than by your TSH alone (as I'm sure you already know by now from reading this thread). Usually the issue is that the TSH doesn't reach that all important 'out of range' figure and we're told we're 'normal' hoooo humm! If your TSH has hit it, and gone past it, (as in your case) you can be pretty guaranteed that you are Hypo and that your thyroid is playing about with you.

When you go back, ensure they test FT3 & FT4 rather than T4 and T3.

Good luck :)

Re: Thyroid Thread - Part Deux
 

No worries!

Well, until I got a nasty cold last week, I was actually starting to feel much better but this has completely floored me. I guess I don't have my reserves back up yet. I'll get there, definitely feeling much more positive. Thanks! :)

Re: Thyroid Thread - Part Deux
 

Long time since having to post on this thread! Since i have had good results from all blood tests in the last year or two and felt quite well! until lately!

Shall start at the beginning - Two weeks before last Christmas i went to doctors as gland on right side of neck under the chin was swelling. Was told to keep an eye on it and come back if continues which it did march this year.
Second time back to doctors was referred to the hospital as doctor said could be the adrenal glands being dry due to the other health conditions i have (thyroid, raynaud's, gastric reflux).
Had appointment three weeks ago at the hospital. was examined and had tube put up nose as far as it was comfortable - was told it was all clear. Was told i had to go for scan and have a biopsy if needed during the scan, and was asked to cancel my holiday which i was due to go on the next day as was told every bit of time counts.
No i did not cancel my holiday!
Had appointments booked for as soon as i got back and boy am i glad i did not cancel my holiday as i was due to go this morning to hospital and they phone late yesterday to say it has been cancelled as consultant sick and would get in touch when to come in again.
I exsplained that i am due to go back to consultant for results on the 30th of this month so am now worried i wont get the scan done in time.
I received a letter from the hospital this week saying oropharynx looks normal. The examination of my neck feels tender and there is a 1 x 1 cm swelling on the right submandibular gland which was firm. I also have a small tender mass just below this which is possibly a lymph node.
I have also noticed when looking at my lips it has dropped down on the left side, which made me worry i had had a stroke. But after looking more closely i think it is the right side that has swollen on the chin bone and above therefore making the left side look like that.
I am also getting a lot of acheing ( Which i have done for a long time ) in the back of my neck and round.
I have not lost any weight, but when eating and drinking have to push it down. And tender to touch any where round the thyroid, you can also see swelling down the right side of the thyroid.
I am feeling extremely tired and lethargic.
I am finding it hard to go to sleep at bedtime with worry over this, and will be glad when i can get that scan.
Any one had similar? that could give me some advice as in what to do!

Re: Thyroid Thread - Part Deux
 

dont have any advice to give ,but hope all turns out ok x

Re: Thyroid Thread - Part Deux
 

Hospital rang this morning and new appointment for scan is for next week.
Just waiting now!!!!!!!!!!

Re: Thyroid Thread - Part Deux
 

That's fast. Let us know how it goes. Everything X'd for you.

Re: Thyroid Thread - Part Deux
 

Good luck. Hope all goes well.

I am going for my blood tests tomorrow. The paperwork that the GP gave to me to take to the phlebotomist states ''Px hypothyroid'', so I guess that the GP thinks it is a given.

I have had a gastro bug for five days, hopefully it will still be okay to have them done. Feeling a bit better now, but gosh did it knock me for six! Still a bit shaky, but will hopefully be okay to drive tomorrow.

Re: Thyroid Thread - Part Deux
 

Is it possible for me to request having my thyroid removed? would they do that, if asked? And would it stop my body coming down with disorders once removed?
As i still believe that is whats causing my body to come down with one health disorder after another, it has been on going since the day i was diagnosed with hereditary underactive thyroid.
I keep wondering weather it will come to that when i go for the scan and biopsy! But i suppose glands and lymph nodes are not in the same criteria!

Re: Thyroid Thread - Part Deux
 

Do you have Hashi's?

Re: Thyroid Thread - Part Deux
 

Yes i do Tiddlypom.
Went for my Ultrasound this morning and did not need to have a biopsy as it all looks like it is my thyroid, apart from mumbling something about my gland.
Will find out about it all when i go to see the consultant tomorrow afternoon.
Said my thyroid was very small and wanted to know if i have had my levels tested.
I have my thyroid levels checked once a year.

Re: Thyroid Thread - Part Deux
 

Had my test results today. All normal so I have no idea what is wrong with me. I think I am going to go back to the GP again and ask to be retested again.

Re: Thyroid Thread - Part Deux
 

Went back today for all the results of Ultra Sound and biopsy.
Biopsy was not needed though!
Apparently it seems to be Salivary Gland Stones.
So have got to go back in two months. Which they say will give me time to think about having a procedure to try and drain it and some thing else which i could not quite understand.:unsure:
Am in quite a bit of discomfort after coming back from my hospital appointment. They had to push around in and out of my mouth to feel the gland.
Was also told to put lemon juice in all my food as this helps to make saliva in the mouth and prevent the stones from coming. And to drinks lots.
Am feeling extremely tired after the last couple of days. Am going to have a :zzz: now.

Re: Thyroid Thread - Part Deux
 

Just an update as i have since been to see my rheumatologist consultant since last posting.
Apparently the blood tests show my antibodies are not right and i have been diagnosed with Sjogren's syndrome.
So that will account for all the trouble i have been having with my glands in my neck and swallowing food.
lupus was mentioned for the antibodies. what is know as overlapping my scleroderma.
More blood tests later!

I must say although i have hashi Thyroid and all the other conditions i lead a busy life style and travel a lot too.
I do not let them stop me doing things, and push my self to the full.
As my husband always says " it could always be worse ". Which i must say cheers me up when i have a low thought about it all.

Re: Thyroid Thread - Part Deux
 

Hope all goes well for you!
It is well worth getting retested for your Thyroid again as it took two years for them to actually find mine under active.

It was going over to account for the under active, so it was not showing up in the blood tests properly.

All the best!

Re: Thyroid Thread - Part Deux
 

That's good that you have a diagnosis for your symptoms and things are under control for you. It's very true what your husband says. All the very best to you :cool::fingerscrossed:

Re: Thyroid Thread - Part Deux
 

Could always be worse that's for sure. Glad that you're getting to the bottom of all this. I seem to remember there was a Sjogren's syndrome sufferer on the UK about.com thyroid board if you're wanting more info.

Re: Thyroid Thread - Part Deux
 

Hi all

I have been trying to read through all of this thread - but it is soooo long - but very informative. I just wanted to post as there are alot of people on here who have a huge amount of knowledge about the thyroid - I have read 5 books since diagnosis, but still get a little confused. Sorry for gatecrashing your thread. My story:

I was diagnosed with Graves about 7 years ago and took meds for 3-4 months and then it all appeared to fix! Although I did have secondary infertility for 9 years so wonder if it has always been lurking in the background! I believe my thyroid problem followed the delivery of our son.

Anyway, I missed a period about 3 months ago and it appears the thyroid problem is back!!! My blood results are as follows:

TSH - 0.01
Free T4 - 26
Free T3 - 10.1
TSH Receptor Antibodies - 9.8
Ionised Calcium - 1.28 (normal range)
PTH - 3.2 (normal range)

I had a FNA (biopsy) as I have a lump 2.1x1.8 on my thyroid - they cannot palpate this and I do not have an enlarged thyroid or any eye problems - the FNA was inconclusive - I have had scans and a radioactive scan (which picked up the lump on my thyroid).

Anyway all of these tests have cost me in excess of $3000 after my medicare refund! I know its a small price to pay for your health, but eventually I have an appt that has come through to see a different thyroid specialist for initially a private consultation but they have said I can transfer to the public system once I have met with him and he will still be my contact. I have 2 choices now - do I go for another FNA or do I just go and have the thyroid out? There is a lump and Im wondering if it is really worth taking the chance. I know I will worry about whether it is something sinister, especially as I have 2 small children

I went to see a specialist yesterday regarding removal of thyroid, which is offered to patients with reoccurring graves. He was very good and made it sound so simple - but I would like some feedback from those that have had a complete thyroidectomy and how they feel now, whether they would (given the chance again) keep or remove the thyroid?

Thank you to anyone who can help me with their personal opinion.

Thank you in advance.

Popsicals xxx