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440728 tn?1234645302

Please please could someone help me. I'm new and scared.

I already posted a question this morning and I'm devasted because I'm the only one without an answer and I so desperately want help, so I'm asking again. I have been suffering with thyroid symptoms for 9 mths now. When it first started my GP was sure I was hyperthyroid. I was suffering from palpitations, hot and cold flushes, burning skin that turns itchy, terrible anxiety and panic attacks, and a sort of inner trembling which is hard to describe with hand tremors also and weight loss. But now he says it could be just stress but I just know it isn't. I've been through stress before and never felt like this. The last 2 results for TSH were 3.0 and 3.3. The one I've just had done this week is now 4.5. Here in the UK the range is 0.5 to 6.0, and I believe in the USA it's 0.5 to 3.0. My total T4 is 15.1 and the range here in the UK is 10 to 26. The sensations get worse late afternoon and evening and I'm so fed up with it all. My mother and 3 sisters are all hypothyroid and my mum swung from hyper to hypo for a year before settling hypo. And I feel like this is what is happening to me, but why doesn't it show up in my tests. Please could someone with experience answer this time and help me. I'm desperate.
27 Responses
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448891 tn?1205917388
your not alone i have it too!!!

but maybe...not as bad.. i just have panic attacks... and pain around the body
Helpful - 0
393685 tn?1425812522
I think you will get a huge response on this issue if you post your own question on the board. SOmetimes these get to long and others who would normally post will not even read this.

Start one for yourself - you will get alot of thoughts to help you.

I could be wrong and I did not have TED (Thyroid Eye Disease) when I was Graves.

I have heard that TED does not go away with anti thryoid meds. - but there are things that are available.  Yes anti thyroid meds for hyperthyroidism will help with her symptoms and sometimes will get the thyroid under control - sometimes further treatment needs to happen to get that thyroid back from a hyper state. It takes some time and with TED symptoms starting - stay in touch with your doctor treating her quite regularly.
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Avatar universal
if you have hyperthyroidism from graves disease, and you are on medication, will the medication stop the effects?  Can bulging eyes ever go back to normal?  Do you know.  my daughter was diagnosed with it.  Oddly, she has started gaining weight.  Her eyes arestarting  to buldge.
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440728 tn?1234645302
I was just about to send you a message but I was worried about mithering you and then you posted me! I also found the topic you posted about nurses being a pain and I have left you an answer there which I hope might help you a bit in the way you have helped me. I myself am currently in a state of panic to be honest. I posted a question to the Doctor you have and she has answered saying that yes, my tsh is now on borderline high but I have too many symptoms for it all to be down to that. I'm so confused. She has also suggested it might be a pheochromocytoma like my own GP which is a tumour of the adrenal glands which has freaked me. Yet no matter what, I still think you are right, it's my thyroid. And what you have just told me has once again calmed me down,  but why do we always have to fight for help with doctors! Also, I'm real sorry to hear about your parathyroids. With being new I don't know your history, but it sounds as though this must be the icing on the cake for you. My thoughts are with you.
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393685 tn?1425812522
It really is not as uncommon as you think to be labeled hypothryoid and have a symptom of hyperthyroid - both illnesses can swing together when it comes to symptoms. Panic is on both sides and well as weight issues. More commonly than not people tend to gain weight w/ Hypo and lose w/ Hyper - but they can reverse too. It all depends on YOUR endocrine system and how YOU react to the disease. Hormones are crazy little buggers - and when they "fry" who knows what will happen.

I was your a typical case. In the beginning w/ Hyper I was a bean poll. - After RAI and gone hypo I gained - most of my buddies here "feel my pain" on the weight issues.

I really appreciate all your nice thoughts of me. Truely, I never thought I would be in a place to share what I learned regarding this disease. I really was faced to dig so deep in research b/c of the bad quality of care I got for so many years and fought to get better. I still fight hard - and I am tired. - but I continue to learn as much as possible on what is going on with me to get better. Does that make sense?? (LOL Brain running :{{ ) Now a nice new big chapter for me "hyperparathyroid" YipEE.

I get brain fog real bad - so It is best to open a new question and ask so it is a fresh post - or IM me. I something live on this cloud and forget to watch a post I entered a thread on.

Sharing the Love :)





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440728 tn?1234645302
Hi, I've just asked you a question on someone else's post discussion and I'm not sure if that's the right way I'm supposed to do it, or am I supposed to do it on my own. So I've listed it here too. I just wanted to ask you, is it possible to be hypothyroid but lose weight instead of gaining it, because that's what's confusing my doc. I have all hypo symptoms and a TSH of 4.5 which you said is hypo in the USA. But yet I am losing weight! I would really value your opinion. I have posted a question to the doctor's forum, but forgot to ask this question and I thought you are the person who might know the answer.
Helpful - 0
393685 tn?1425812522
See -- you can get the answers. Even though most of us a US and the UK has different ways  - we can still help.

Sorry no one saw your post before. and Thanks for the IM - It made my day.

Stay on those meds and learn about your illness . Never not understand what is going on with you.

TAke care and post again

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427279 tn?1210919821
i was dx 7 years ago with hyper and graves disease and it would bounce between hyper and hypo so much that they decided to do rai and now i am hypo with my level at 57.49 2 mnths ago ....now it is 21.635  and boy im telling you i feel like i have no energy and dont sleep well at all...now i have found out that my grandson by marraige may have it ....does anyone know if levels in kids are different that adults?....thanks and for all that are having a hard time hang in there and god bless....deb
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440728 tn?1234645302
That's amazing to hear. That's just how I feel too. It's so much worse before my period. Severe anxiety and panic. But it's even worse now I've started a premature menopause because my period all over the place. Sometimes I feel like I've got permanent PMT! What I can't understand is how I've got a some symptoms of hyperactive thyroid and some of hypo! And why they won't recognise it here in the UK when my TSH is 4.6. You see I've lost a lot of weight, and they say that only happens with hyper thyroid not hypothyroid. Do you have any idea why that could be?
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168348 tn?1379357075
At 3.0 I had constipation, dry skin, anxiety during monthly PMS that was really really bad and needed tranquilizer for it and all that IS GONE now that my TSH is 1.5!!!!  3.0 was considered normal at the time with 5.0 uppermost limit for TSH in US ...... they say I was subclinical .. I was on laxative for 2yrs!!!!  and off it completely .. go figure .. and no tranquilizer unless add'l stress is on me .. then I go hyper anxious but goes away when cause goes away, too.  

C~
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440728 tn?1234645302
Oh Stella, you've just made me cry with relief and happiness that I'm not alone. No one answered for ages so I gave up looking until today. Thank you so much for finding me and for saying "Don't worry we've got you now". That did more for me than anything! And everyone else that has taken time to send all those answers are amazing, I just can't thank them enough too.
Basically, I'm not on any thyroid meds. This business all started last June out of the blue. I was on HRT for a premature menopause at 41 and they stopped it to see if I'd finished the meno. Then everything went wild! Had raging symptoms of Hyperactive, my doc was so sure I had it until my TSH came back at 2.0 and T4 at 16.1. (That's the only things they check in the UK). Since then, things have got steadily worse, although the panic has mostly gone. But I get the banging heart, inner trembling, tenseness and anxiety, everyday, accompanied by feeling freezing cold, with awful kind of cold flushes. My TSH is now 4.5 and T4 is 15.1. The T4 range in the UK is 10 - 25. The doc kept saying it was just stress all these months and has made me go on antidepressants even though I don't feel depressed. I just feel worked up because I know myself and these symptoms are not stress. My doc has now referred me to a great endocrinologist to check thryoid further and to check for ?pheochromocytoma. (benign adrenal tumour). But I really don't think I have that. You usually have a v high BP, whereas mine is quite low. I think it's my thyroid, but I don't understand why my results are in the normal range if that's the case.
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Avatar universal
Hello...after reading your post, I just had to write to you.  I am new here also, but have found myself spending more and more time here, just reading and learning and reveling in the comfort of knowing I am not alone.  Stella, who has replied to you, also replied to my initial post...we are all lucky to have her...I have found that I have learned more on this site than I have learned from my Doc in years.  I suffer from the same syptoms you do.  My came on so sudden, I thought I was dying.....and they have persisted now for 41 days.  I am in the process of having several tests done, but my TSH was initially at 25.07.  My Doc has me on BetaBlockers and anxiety meds which do seem to help some....although syptoms are always there.  I wish you so much luck in finding the right doctor....I am currenlty seeing a PA who seems to be more willing to work with me than the so called "experts".  Sometimes the doctors think they have all the answers....but as someone stated above.....only you know YOU.....and we ALL know they do not always have the answers we NEED!!  Keep searching....you will find someone who is more willing to look at your symptoms rather than what the results on a piece of paper say.  I will pray for you and watch for future posts from you.  Good luck and God Bless!! XOXO
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393685 tn?1425812522
It's tough all the way around - the family CAN't understand - b/c unless they are thyroid doctors - they truely don't know. and you don't understand b/c your feel so bad and don't know why until you start digging very intense to find out your problem.

If you have a good team of professionals helping you that is great - but certainly in my case and others - I had terrible doctors at the beginning. Basically in a nut shell agter dx w/ Graves in 2003 - I WAS fired by my endo b/c I didn't feel well and he didn't want to help me correctly.

I took my own health into my own hands and used my only resource (which was a PA) and directed him to helping me. Also being my own doctor _- I suppose I could of found other specialists but being as ill as I was and not trusting ny longer I thought I could for the most part  - fix myself. I couldn't fix my self and became seriously ill and am fighting to get back now.

I don't have the answer to get your family to listen - I do know now though - that it was up to me and now to YOU to find a doctor that will help you no matter how far you need to search. and once that is in place - other things fall into place,
Helpful - 0
374933 tn?1291081784
My hyper symptoms were shaky legs and and hands, anxiety/panic attacks and arthritic type problems, palpitations and dry skin. My hypo symptoms were more muscle aches.
I can be either hot or cold, just depends on the day....no reason. I have insomnia with both and have had for 20 years.

Sorry you went unoticed for a while. Looks like you have help now!
Good luck.
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200220 tn?1361951554
I had the popping eyes and very dry and hurt and I couldn't see well at times.  I went to eye doctor and he said I had dry eyes and gave me drops to put in them.  For some reason as my thyroid straightened out the eye situation stopped.  I couldn't go out the door except with sunglasses and even in some bright stores I had to wear them.  I am feeling a little of that now again.  I don't know what is going on with my thyroid now but will be going to doctor in two weeks and this is a new one so I am hoping she will explain more to me than I know now.  I too have been very thankful for this forum.  Sometimes I get conflicting information but it is everyones opinion and I am appreciative for it and it helps me to make a decision on my own.   Welcome to the forum and keep posting because it does help and everybody on here will respond with great love to all of us.          This has been a good day for me and I think it is because  of the change from levothyroxin to the synthroid.       love linda
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Avatar universal
Hi. I didn't have that much support from my family at first, they thought I was just over emotional all the time and bad tempered. The weight lost, hot flushes, staring eyes, chest pains and shakes were all explained away with my job and the fact that I drank a bottle of red wine each night to just slow and clam myself.
My parents avoided listening to my rants about how I felt and I could tell by the look on their faces they thought I was going mad.  
I agree understanding what is happening to you is the most important and I have since discovered this site and Thyroid UK, I have been able to talk to other people who have had the same thing which has been comforting.
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Avatar universal
Hi, I had the op in August and my mood settled quickly, my thyroid had been overactive and my moods, sweats and shaking hands had been bad and I had chest pains all the time.  It's now just over 6 months and I have started to feel very tearful again.  I posted a request for help on here called Life after total thyroidectomy and someone has come back with some really good information for me, I am back to my doctor next week to get the results of my last blood test and I am going to take the information with me.
I will let you know how I get on. I have to say what I am feeling now is very mild compared to before my op, I don't have panic attacks now. I have Graves and one of my eyes is still bulging which I have become very aware of, that deos not help when you feel a little down already. It seems getting everything right is a long road, I didn't know just how complicated it all was until after my op

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Avatar universal
Hi- You said, "...My mother and 3 sisters are all hypothyroid  and my mum swung from hyper to hypo for a year before settling hypo..."

I'm wondering if you had a complete thyroid panel done (thyroid antibody panel), which would include thyroid peroxidase (TPO), etc.
Secondary Hypothyroidism aka Hashimotos Thyroiditis aka AUTOIMMUNE thyroid disease often involves initial HYPERthyroidism (sometimes for years and undetected), followed by HYPOthyroidism -

In basic terms it means you have ANTIBODIES that are attacking your thyroid which eventually will "kill your thyroid" with resulting s/s of (secondary) HYPOthyroidism.
People who test Positive for Thyroid Antibodies- often start with misdiagnosed primary hyperthyroidism or Autoimmune Hashimotos thyroiditis (secondary hypothyroidism)...There is a strong hereditary factor + is more common in women (esp. postpartum) and people with other autoimmune diseases (EG. Rheumatoid arthritis, CFS, Type I Diabetes, etc.

Also want to mention, the endocrine glands are probably the most complex body system, whereas they are constantly interacting and trying to regulate each other (from the hypothalamus, pituitary, thyroid, adrenal, sex glands, etc.) -

The autoimmune type of hypothyroid/hyperthyroid almost always involves dysfunction of other endocrine glands - therefore treating the thyroid only, without proper evaluation of all glands, often results in treatment failures.

If not already done, start with basic THYROID ANTIBODY tests, (thyroid peroxidase, TPO), and depending on your symptoms there's many other (thyroid specific) lab tests available to pinpoint the exact cause and best treatment plan-

ADRENAL function is a good start to better understand gland malfunction contributing to thyroid disease (eg. cortisol & DHEA levels) -
Adrenal insufficency, fatigue...has a direct impact on thyroid function and response to thyroid function and supplementation.

Women in particular should also have MD check for "ESTROGEN DOMINANCE"  and/or other female hormone imbalance, like PCOS -(Eg. check estradiol, progesterone, testosterone, etc. levels) -

Sometimes, when results point to PITUITARY dysfunction, there's also tests to determine if this is primary problem (Pituitary should kick in to help thyroid, when necessary - if it doesn't, this points to pituitary being primary cause for hypothyroidism, etc. These tests are more expensive, and may include ACTH-stimulation test or MRI's, etc.

More obvious/common is the connection of thyroid (and adrenal or pituitary/hypothalamus glands) to S/S such as Anxiety, Panic attacks, depression, insomnia, jitteryness, mental fog, etc.

With anxwty and depression (especially in women with stressful lives), all too often, both conventional and alternative therapy MD's jump to conclusion that it's solely a "serotonin" problem and will only prescribe antidepressant-type supplements (and/or anxiety agents), without fully evaluating all the "brain chemicals" (catecholamines (i.e., norepinephrine ,epinephrine adrenalin...), which when present in abnormal (too high or too low) amounts will cause same exact symptoms.

Increased serotonin, "the happy hormone", will make almost anyone "feel better"- but with other brain neurohormones out of whack, it will not alone correct the imbalances of your thyroid and neurotransmitters.  

ALWAYS BEST to address and treat the exact "cause" and primary problem then to solely treat the "symptoms" of hypo and hyporthyroid  -

While I hope your condition is simply a "primary hyperthyroidism" your strongly symptoms suggest to me that is is probably either an autoimmune secondary hypothyroidism and/or Polyglandular syndrome - which is more complex to properly diagnose and treat, and to alleviate all the symptoms.

Sounds like you had a very well informed psychiatrist - If medical doctor or natropathic MD's don't understand, ask him for guidance and referrals.

- Surround yourself with supportive and positive people (in daily life & in choosing healthcare professionals) and Good Luck in obtaining optimal health asap.
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200220 tn?1361951554
I have been fighting those same symptoms for about 2 years.  I was just changed to synthroid and for the first time I have awaken to no nervousness in my body.  I still have the battle of the mind and I don't know exactly what is causing that.  My doctors say it is my thyroid but it doesn't seem like that to me.  I am glad the nervousness is gone.  I have always thought they should put me on synthroid but it took my psychiatrist to do it.  I has only been 3 days but I already feel better.  l also may be facing removal of my thyroid - I don't know yet but am going to another endo to get a second opinion.  Did that help you to feel better in your mind.   How did you get the depression to go.  Did it go with the removal of you thyroid and the anxiety also.      Linda
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200220 tn?1361951554
I don't know about anyone else but I had anxiety and depression being hypothyroid.   Linda
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393685 tn?1425812522
I am not sure if your family helped you - but I found after years of asking for help - that the real only person that could totally understand was me. I believe my family felt their hands were tied b/c truthfully they were not feeling what I was feeling so they were lost in helping. I did get support - but really the pateint needs to research so much to have everthing click and eventually gets better.

Then ther support of the family is a great thing b/c they understand what the person needs to get better.
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Avatar universal
Hi, I am also in the UK. I had all these syptoms and some more, I was treated for depression. I was also very scared and at 1 point I was sure I was losing my mind, I don't really understand the way we test here and as I have now had a total thyroidectomy I get even less information. They took years to find out what was wrong with my sister (she was under active) and she was very ill for a long time, stick to your guns and see a different doctor or I have been told some foods can effect thyroid function, maybe try this out.
Just don't feel alone, there are loads of us out there and the worst thing about this illness is that it effects your mood and emotions so it's hard to be calm sometimes.  The first thing to do is make you family read up about it so they can support you. I hope you get the help you need, please let me know what happens.
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Avatar universal
Just wanted to say Hi - I can't really offer much in the way of help, these other girls are doing great though!  I just joined this site last night and it has already been really helpful and I am so grateful for all the support.  If you read though the postings from the thread I started last night you may get some tips.

As a fellow Brit (living in U.S.) I just wanted to offer support.  You are not alone and there is an enormous amount of help available to you - you took the first step to reach out which was very powerful, just knowing that there are others who have been there and do really care about you, even though they haven't met you, is such a comfort.  this site seems to be full of really good people and that is fantastic.

I'll keep an eye on this for you and know that you will get all the help you need from one place or another and get well.  Take care
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314892 tn?1264623903
I had hyper symptoms of extreme anxiety and insomnia when my TSH rose from 3.8 to 6 in 1 month.

As stella said, anxiety can be a symptom of hypo as well. Your TSH, now at 4.5, is most certainly too high, for you if not most everyone!
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