Thyroid problems?

tillytop

Hello peeps

I think I am right in remembering that there have been some mentions on the forum of thyroid problems - auto-immune or otherwise and just wondered if anyone out there with thyroid problems would be happy to tell me what their symptoms were (either here or by PM).

I have a benign pituitary gland tumour (apparently, although it's so tiny nobody can actually see it :roll: ) and one of the things the endocrinologist routinely checks for is thyroid function, which I understand can be affected by tumours such as mine. I haven't seen the endocrinologist for a year or so but I have been vaguely wondering if some of my other ongoing and so far unexplained health issues may be thyroid related.

What has really made me think though is that my Mum asked me this morning if I had noticed the swelling at the base of my throat. I have been aware of this for ages but haven't really thought much about it on the basis that it doesn't hurt and isn't getting any bigger. But I know that this kind of swelling can be indicative of thyroid problems which, has set me thinking.

I am due to see the endocrinologist again at the end of October so I may well ask him about it then but if anyone has any thoughts or information in the meantime, I would be grateful.

Thanks!

Tillyxxx

rugbygirl

Hi Tilly

I have had an underactive thyroid for years (finally diagnosed in 2008). I dont have any of the swellings but I have gained a lot of extra weight, which I am trying to lose. Unfortunately arthritis, Fibro and exercise arent mixing.

My symptoms before the diagnosis were extreme tiredness. I was known for being able to fall asleep at the drop of a hat and standing up too. Christmas before I was diagnosed I spent two hours awake on Christmas day and then the rest asleep. Just managed to get presents opened and dinner eaten before I was snoring again.

I have not had any of the swelling glands, touch wood, but I can say that once I was put on thyroxine my awake time was much better and I am starting to reap the benefits of being able to enjoy a better quality of life.

tillytop

Thanks so much for your reply Jaki and I am really glad you now have a diagnosis and are feeling better now you are taking the thyroxine. One of my struggles at the moment is the inability to stay awake too - not in the normal "I'm tired" way, but literally unable to stay awake sometimes and, when it's really bad, not ever being properly awake which I find terrifying. Last Christmas I spent about four days like that - I would wake up, and start getting myself towards the front of the chair to stand up and was asleep again before I could stand up. I was falling asleep in the middle of conversations and when eating, and was lucky I didn't poke my eye out when I fell asleep in the middle of trying to sew on a button! That is the worst episode I've had, but I find it extremely frightening when it happens, particularly when I can't wake up. Both my GP and a consultant I was seeing for something else said that I was experiencing episodes of narcolepsy (which is a known effect of the dopamine agonist meds I take intermittently for the pituitary tumour) and, if it continued, it would need investigating by the appropriate specialist, but, because it is frequent but not continuous, I haven't persued it any further.

Thanks again Jaki.

Tillyxxx

barbara12

Hi Tilly
The first thing my gp did when I went with painful joints was to test my thyroid, so there must be a connection somewhere, I have it tested once a year and so far so good, has well has the tiredness my hair was falling out,my aunty had thyroid probs and she had a swelling just under her chin.
I hope you get some answers very soon xx

elnafinn

Hi Tilly

I had a nodular goitre and it was taken away at age 16 and have taken thyroxine tabs daily ever since. Mine appears to have been hereditory - my grandmother and great grandmother both had one. My grandmothers disappeared after puberty, my great grandmother always had hers - noticeable in the few photos I have seenof her. I was told that mine would get larger and larger if not operated on - I was very self concious of it, as you can imagine, as a teenager and always wanted it to be removed. At last my mum and dad agreed! I first noticed mine about the age 12 and then it was the size of a pea but was much larger and as said, nodular, when removed.
I told my parents at the time, it was the best present they could possible give me - permission for the op.

That is my story.

Elna x

Soretoe2

Hello Tilly, I had thyroid nodules and eye problems 28 years ago. It turned out I had Graves disease, with extra nodules. My thyroid at the time was overactive.
I had a small operation and Radio Active Iodine treatment, medication - carbimazole, propanolol and steroids. It all settled down and then 6 months later became underactive.
I have taken daily thyroxine since then and eye drops.
My symptoms when I had the Graves were being very jittery, It was as if I was a clockwork toy that had been overwound. Headaches, fluttery heartbeats ( I already had a small heart problem), unable to sleep, my psoriasis broke out everywhere, I also developed a swelling in my neck that was called a goitre and I generally felt dreadful.
When it went underactive, I became overweight, lethargic, couldn't think straight, my hair started falling out, it was just as awful.
However once the hospital got the dose of thyroxine right and my body had recovered from going haywire followed by the opposite, I was fine. I have remained around 9 stone as long as my thyroxine level is normal.
I was told when I had the nodules the effects can make you go over the top or under the sink! Also that it was related to my immune system and the RA.
If you do have a thyroid problem it is usually very treatable and kept under control very well, which ever way it goes.
Of course it may be something completely different, such as an enlarged lymph node/gland. These somethimes enlarge when we are fighting an infection or imbalance, especally if you have an auto immune problem.
Good to hear you have an appointment with the Endo next month, they are just the right people to deal with this for you. It will probably turn out to be nothing.
Hope this has not been too much information and may have helped a bit. Joy

jilly

Hi tillytop , i have underactive thyroid , before i was diagnosed i felt terrible i couldnt stay awake , i had a lot of sweating around my head , i was freezing cold all the time i found i had to lie down in the afternoons because i felt so weak and never had any energy , it also affected my memory and my concentration .... . I hope you get it sorted soon thyroid problems have more of an effect on your body than you think ....jilly x

tillytop

Thanks Barbara, Elna, Joy and Jilly for your helpful replies.

I really appreciate it.

Thanks again.

Tillyxxx

villier

Hi Tilly
Definitely mention to your consultant, like Elna I have a multi nodular goitre found on a mri scan done for my neuropathy, saw a consultant who palpated the thyroid
(they can feel how big it is) did a load of bloods and sent me for an ultrasound everything came back normal so I was lucky(hope you are to), for a while my hair has been falling out and I wondered if my thyroid was on the move now..... nooooo alopecia, keep us posted how things go....tc.......Marie xx

tillytop

Thanks so much Marie. I very much hope I don't have a thyroid problem, but if I do, it might help explain a few of my "mystery" symptoms and hopefully I would then be able to get at least some of them sorted.

Thanks again.

Tillyxxx

L1985

hi hun

I have graves disease which is an overactive thyroid. I had a thyroidectomy nearly 12months ago and since then feel great thyroid wise.

I also had a goitre a small lump at the front of my neck. when my thyroid was overactive my symptoms were losing weight, irregular periods, shake hands, not able to get into a deep sleep, anxiety, had a miscarriage which it can cause along with other symptoms.

when my levels went under active I gained weight, felt like I could sleep my life away heavy periods, feeling cold.

towards the end before I had my operation it was doing things to my heart making it beat really slowly which thankfully has stopped since the op.

once your levels are normal the symptoms go but it can take a awhile to get the medication right for you.

oh just remembered it did quiet trivial things like make my hair dry and my nails brittle. thyroid can cause problems all over as if you have symptoms that are not normal for you then I'd def tell your endocrine doctor.

pm me anytime if you need to chat

Lulu x x x

anniek

I have an underactive thyroid ,tiredness and feeling really cold were my symptoms ,Anne x

Nicchick

I had some tests to do with thyroid back in 2003/4 due to weightloss - five stone - I was so hoping it was because of my good work and not a condition!

The other factor was a depressed (though not depression) feeling - this (I think and kind of know now) was due to my parent's emigrating to a difficult country - they have since returned and I breathed out! I was very keen for my folks to pursue their dream but found the uncertainty and difficulties in communication tricky.

I was only reminded of this as I went through my blood test results today, a history in an envelope!

Nic x

lizzy100

yea pituitary tumours can affect thyroid. they would probably make you hyperthyroid which can cause weight loss, feeling hot, diarrhoea, shaking, anxiety, and the neck lump/goitre is a give away sign. blood results will show it.

tillytop

Thanks so much Lulu, AnnieK, Nicchick and Lizzy for sharing your stories and for your kind, helpful words.

I have a blood test appt on Tuesday so I will have the results of the thyroid tests soon, either to discuss with the GP or with the endocrinologist. I may be barking up the wrong tree (or maybe just "barking" :roll:) with my attempts at self-diagnosis but it would be so good to get some answers. I had no idea how many peeps here have thryroid troubles as well as arthritis.

Thanks again.

Tilly xxx

dreamdaisy

I think I remember reading somewhere that thyroid problems are quite common but often overlooked by GPs. I guess the symptoms of an over or under-active thryoid may mimic those of a number of conditions which may mis-lead the docs as to what could be going on. Let us know what the results show, yes? And as for 'barking' - not you, Tilly, that is definitely not you. DD

diamond

Hi Tilly,I have a underactive thyroid my symptons were extreme tiredness,brain fog,voice was hoarse at times,puffy eyes,loss of hair,weight gain although had not much appetite,felt cold all the time.By the time i was diagnosed it was extreme,once i was on levothyroxine and dosage built up i felt so much better.Glad you are seeing Endo next month i hope you will get this sorted out and start to feel better soon.x

tillytop

Thanks so much DD and Diamond for taking the time to post.

Much appreciated.

Tilly xxx

williamlargs

An over active thyroid was the start of all my issues 13 years ago. I lost weight, had a tremor and bulging eyes and basically looked like ****, particularly to those who hadn't seen me for a while. Carbimazole for 2 years sorted that particular issue.

RA flared for the first time about 4 years later. I have no doubts whats so ever that the 2 conditions are related.

Regards

tillytop

Thanks so much williamlargs for taking the time to post on my thread.

Like you I have a feeling that RA is connected in some way to all sorts of other things.

Thanks again. I really appreciate it.

Tillyxxx

deedeeitsme

Tilly this has really made me think now....when I first started with all this just over a year ago (and still undiagnosed) my sister in law asked me if I had a thyroid test (she is a sister in charge at a childrens hospital) and I said I hadn't but I never questioned why she asked. x Dee x

elnafinn

Hi Tilly,

i have very recently joined the BTF (British Thyroid Foundation). It cost me only £8.50 (standing order) cos I am an OAP

One of the services they have for members is if you have a question regarding a particular aspect of thyroid disorder you can write to them quoting your membership number (including latest blood test results if possible) and they will do their best to seek an answer for you. There are a number of support groups around the country plus you receive three newsletters a year.

Their website is: http://www.btf-thyroid.org

Just a thought in case you are interested.

Elna x

Angelleyes

I have had fibromyalgia and arthritis for over 10 years ..... I have for the last couple years had all the symptoms of thyroid problem .

I have 2 blood tests which came back as normal not to much to be a problem ( according to my doctor)
Since then I suffer every single day now with this .....
I feel like I'm failing my family .... I could always manage my fibro & arthritis with many cocktails of pain relief ..... But these do not help these other symptoms that I think is my thyroid, just seems to make tmhem worse .My mum and aunts have thyroid problems .... I just feel like so Ill every day now
I have a list of symptoms ... Even a low temperature ..which makes arteritis and fibro so much worse .
I have made a doctors appointment for today to try an ask him to send me to a endo specialist ....fingers crossed he does



Traci xx

tillytop

Thanks Dee, Elna and Traci for your replies. Elna I will have a look at the link to the BTF - thanks so much for that. Dee and Traci, I really hope you can get some help sooner rather than later.

Many thanks for taking the time to reply.

Tillyxxx

nicetomeetu

Hi all,

Because of my extreme fatigue, one of the things they are going to test for is thyroid problems. I will be having a blood test on Thursday.

I feel exhausted most of the time, when my daughter goes to school I fall asleep and then don't wake till about 11 or 12 and even then I am exhausted, and I have to literally force myself to get up. Concentration is just not there, my mind goes blank. On top of all that the pain of arthritic joins feels tenfold.

Will let you know what the blood tests say, maybe my thyroid is fiine and I am suffering from depression, which would explain how I burst into tears even if someone asks me how I am.

I hope you all have a good enjoyable day whatever you are doing and wherever you are.

xxxx

tillytop

Thanks for your post nicetomeetu.

I am so sorry you are struggling so much. Much of what you describe sounds familiar to me too and I worry that if I mention it to the GP he will put some of the symptoms down to depression. Yes, I have been depressed, but I have had depression related sleepiness/fatigue in the past and this feels very different.

Really good luck with your blood tests tomorrow and I so hope that they help you to find out what is going on. I had my blood tests yesterday and hope to have the results early next week.

Thinking of you.

Tilly xxx