Re: Thyroid Thread - Part Deux
 

Hey Lauren

No, it really is your thyroid..and it makes you feel like a totally different person doesn't it. You haven't made a mess of your life... you are ill, and you need help to fix it. And at 44, you're a spring chicken... don't worry.

Re: Thyroid Thread - Part Deux
 

thank you for your kind words but how can it be just my Thyroid when my levels are now normal. Also i have so many other issues as well, loneliness, low self esteem, depression, no goals, greif and severe anxiety disorders. I mean I can remember alot of these feelins when I was younger. Oh and Ive been diagnosed with Borderline Personality Disorder and start a six month DBT programme. The other psychologist disagrees and thinks I have PSTD bought on my severe loss, major life changes, anxiety and having abnormal thyroid hormones for so long.
I dont know what to beleive anymore. You know its starting to look like the only times in my life i wa truly happy and calm was when i was severly Hyper and was what thye call Hypermanic. If this is normal then I dont want it.

Ummm would it be possible for you guys to share some of your Hyper/Hypo stories with me to give me some reassurance. I just dont know howm you could hold down jobs, relationships, socialise, look after kids if you felt like I have. My hats go off to you.
Also what do you think about me going to see Dr Berkowski, or will it be just another disappointment and alot of money wasted if it is all just stress, depression and anxiety from Life rather than Hormones. Especially given that my thyroid levels are normal and it seems my other adrenal and female ones are too.Can any one let me know of their experiences with her.
Sorry to sound so negative its just that after last nite I just feel worn out and very low.

Take care everyone
Lauren in NZ

Re: Thyroid Thread - Part Deux
 

I'll PM you now Lauren - dont want everyone online ready how mental I've been!!! haha :)

Re: Thyroid Thread - Part Deux
 

hi there dear,


just gotyour message about sending me a private message. Unfortunately my computer said I couldnt accept it, something about Popups??
As Ive only hada computer for a week I have no idea what that means.
Im desperate tohear from you so please feel free to email me at
*****************

Thank you so much. Sorry about all this!
Lauren

Re: Thyroid Thread - Part Deux
 

You should be able to view your messages by clicking on 'my profile' at the top of this page. Then look in the left menu for 'private messages'. No pop up is needed then 

Re: Thyroid Thread - Part Deux
 

Lauren, your browser has got a popup blocker on it. Go to you settings in your browser and turn that off or set it to disable on BE.
What are you using? Firefox? IE?

Re: Thyroid Thread - Part Deux
 

thank you tiddley pom and rachelle. I received the private message from you finally. Thank you. I will respond to that when I can.
Today i have the most terrible fatigue, weakness and breathlessness. I can hardly speak.I feel so awful. What is wrong with me. Its just one thing fter the other. Why am i still lie thisone year after RAI.... and with normal blood tests. Feel like it could be just sheer exhaustion from being in hell for over two years. cant even call a friend to talk.... what would i say. My parents are saying lets call an ambulance ( for what, noone there knows what thye are doing when it comes to Thyroid, im stressed out and vulnerable enough without having to wait in A/E for hours with all the noise onl to e tod my thyroid and everything elseis normal.
Any help or support......advice.....please
Thanks x

Re: Thyroid Thread - Part Deux
 

you've answered your own question there. Your problem is your thyroid. The symptoms you're experiencing sound like hypo to me. Your doc should be going by how you feel not by your bloods. Try and get your hands onthe book 'stop the thyroid madness' and I'm sure it'll answer a lot of your questions. Check out the website too:

www.stopthethyroidmadness.com

you've now reached a point where it's down to you to be responsible for your own thyroid help, and that means lots of research. Also check out yahoo groups as there's lots of thyroid and adrenal groups there.

Re: Thyroid Thread - Part Deux
 

Aw, Lauren. THis is absolutely terrible. I think that you've had thyroid issues for so long that you're experiencing a very deep depression because of it. That can happen when you have a poorly treated situation.

For a start, one person's normal blood test is another person's hell.
Blood tests are not that great an indicator really, especially when a person is symptomatic as you are. So for a start, stop focussing on those because whilst your doc is saying they're in range, they're not a range where you feel well.

Are you taking anti depressants? If so, what are you taking? Some are fluorine based and can affect your thyroid negatively.

Your situation is beyond my level of knowlege but I do know someone who might be able to help you on the thyroid UK board which is here:
http://forums.about.com/ab-thyroidUK

All those people may be able to give you some help and explain what's happening with your situation.


Whilst that board is in the UK, the info is good. There is a US based board too, which you can find there too, which may help you to read through.


I think your mum and dad are just scared and don't know what to do... you're obviously sick and their first thought is to get you to a hospital. That's natural - try to go easy on them. I know it's difficult.

All your symptoms, to me, sound like a lack of thyroid hormone in your system, not too much... and whilst your TSH sits around 2, it may be better where the rest of the population sits at, which is 1.
When mine was 3, I was incredibly ill. I was in range, but ill... like you.

The importance is to find a doc who focusses on the symptoms rather than the numbers... I suspect yours is focussed on numbers. And so the response from the hospital is that you are normal and there's nothing wrong with you.

It certainly sounds like you are really poorly and need to change your doc and get someone who can treat you adequately.

Edit: I suspect you have already found the About forums... I see your post in the graves section.... it's a tricky time of year to get answers from people.
Please do start reading all the posts that exist there... often the information you need is there without having to start a new thread.

Re: Thyroid Thread - Part Deux
 

Exactly. Regardless of how crap you feel, Lauren, you're going to have to take the bull by the horns and be responsible for your health rather than letting the docs do it. They're obviously not sorting you out are they!
Read, read and read. And then read some more.
When I first got Hashi's diagnosed, I didn't have a clue about it all... it was too huge... but now... it's all in my head and I'm healthy because I fought for my own health...
It's an all too common story.. both yours and mine.
:)

Re: Thyroid Thread - Part Deux
 

By the way, Lauren.... what thyroid are you taking?

If you saw Dr Peatfield, did he prescribe you natural thyroid? Are you taking any thyroxine or anything at all?

Some say he's very good, others say a bit quacky...
What's your experience?

If you're taking thyroid meds, you can increase them by yourself you know.

I'm not a doctor and I'm not encouraging you to go against your doctor's orders, but lots of us take a little more until our symptoms go away... grain by grain. Also the same for synthesised T4.... Half or quarter of a tablet of thyroxine...

Lots of us adjust our meds... when you have a doc who works with you, you'll find that they're fine with this.

Re: Thyroid Thread - Part Deux
 

Thank you Rachelle and Tiddly Pom,

below is most of my story. I have just posted it on Real thyroid help website to see of they can give any imput...

I have a very complicated history of battling Graves Disease and am now HYpothyroid after RAI treatment in Jan this year. In a nutshell I was diagnosed with Graves Disease 10 years ago after I beelive having it for 15 years before that. As i had had about three episodes ( or nervous breakdowns starting from when I was abotu 19 when I had my first panic attack, was always nervous, shaking hands, speedy, overenergetic, always so hot compared tp everyone else and often very depressed. I went to many naturopaths, counsellors, doctors and homeopaths you name it, over that time and noone picked up my Graves. It was only because I had TED with the bulgy, staring eyes that it was finally noticed at work by an Iranian friends father who happened to be an Endocrinologist and was over on holiday. I remember him really staring at me when i was introduced to him. Later my friend, in tears, said he had told here I was seriously ill and to get to a doctor immediately, which I did.At that time my resting heart rate was 160 bpm, i was boiing hot all the time, shaking with a tremor and my hair was falling out. But emotionally I felt good, full of energy etc but that was when my FT4 was 57 . However, a year before thta i had been a wreck with anxiety, nervousness, feeling ill, fatigued, depression, agorophobic.
anyway i was then put on Carbimazole and then went off to live in London. At the time i didnt really how serious graves Disease was. Was treated with ATDs through that whole time and basically without going into all the details was never ever stable whilst there except for about four months. The endos mentioned RAI but at the time I wanted to get pregnant and thought it may affect my chances. So I stuggled up and down with Hyperthyrodism.someitmes feeing good sometimes dreadful but always managing and always able to work and support myself and be normal.
I was just about to write a whole lot more about what happened next but im too exhausted and theres so much to say but right now I am feeling so desperate in all of this. It never ends..... If its not nervousness, anxiety, severe depression, its physical illness. Today its physical, i feel so exhausted fatigued, breathless, dizzy, nauseated and a migraine. Cant cope with being around people or even talking, but then feel so weird and lonely.I have cried every day for two and a half years. I have been suicidal so many times. My life is a mess. Its just a catch 22, I cant go home to London as it all feels so weird and overwhelming due to the anxiety and illness but cant stay here as i absolutley hate it here but need the stability and roof over my head that my parents provide.

I have alot of other issues going on aside from Graves and am constantly stressed. I worry abou everything and cant beleive this has happened to me. I used to be so independent.
Anyway after the RAI, I went a HYpo and my eyes were bulging, because of this My endo was so worried about my eyes he put me on Thyroxine. Within two weeks I felt dreadful, ended up the hospital. Well I had gone Hyper in two weeks. my Tsh had gone from 4.0 to 0.06 in two weeks. Immediately they took me off the meds. The endo said we are going to watch you like a hawk so you dont slip into Hypo hence why i started having weekly blood tests ( which I still do ). within a week my Tsh had gone to 19 ( from 0.06). un beleivable. Even the endo was shocked. So then i started replacement gradually. I was completely HYpo for about six months It was hell on earth... surreal night mare.
Then finally when I got in to balance i felt better in some ways but still not right and its been like that ever since. In fact about a month ago my energy levels were good and I started working more hours and started to feel more normal again. But it dosnt seem to relate to my blood tests. At first I thought that when my Tsh is higher and Ft4 and Ft3 high i felt better but then the next weel i can feel awful and the blood tests dont seem to correlate. its all so confusing.
anyway Ive been taking Levothyroxine but because I was feeling fatigued, ill and depressed a friend of mine ( also Hypo after Graves and who runs a Thyroid support group here in New Zealand) suggested I take Synthroid instead as she beleives its more superior to the generic thyroxine we have here and also a relative of hers was transformed by swapping over.So I am currently taking 135mcg Synthroid per day and have been for just over a week, but I think I feel worse.
However Xmas was extremely stressful and spent alot of time alone, Im staying with my elderly parents after having to leave my home in London uk 18 months ago due to all this. I have been very depressed lonely and isolated which feeds my anxiety and it all just goes round in circles. But im sure its not all in my mind...yesterday I had a bit more vitality and spent he day at the beach and swam in the sea. Last night i felt calm and postive, only to not sleep very well, wake up in a panic and feeling so ill and fatigued. i have moments here and there when I feel like me again and think its all gonna be fine but then it disspears.....

I havent got time to go into my whole story tonight and to describe the horrific mental breakdown I have endured and how that has impacted on all aspects of my life ( job, parents, friendships,, finances).
What I was wondering is what can I do next now I am in normal range and have been for five months. I have blood tests every week. Every week the TSH changes. I will list the last two months tests below....
However my Ft4 coverts very well to FT3 and the FT3 is on the higher end. So im thinking that Im not like everyone else who has conversion problems and therefore feels better with ARMOUR or t3 replacement etc
I do have borderline low Ferritin at 28, so will start with Iron supps as soon as poss.
Also with regards to my adrenals Ive had cortisol urine test which was all okay back 2 years asgo when all this flared up when I was back in the UK i went to see Dr Durrant Peatfeild and had my saliva checked and that was all okay except my DHEA was elevated. He was okay ( tiddly Pom) but in the end when my Thyroid tests were okay, my temps were okay and my cortisol was okay I got the feeling he thought it might be all psycholigical. he gave me adrenal support tabs but i didnt notice any difference. I just dont seem to fit the boxes anywhere.
Anyway Im at my wits end trying to feel like the person I used to be and cannot endure this much longer.
I am going to have to try something new as this has taken over my life and almost destoyed me. How I am still alive is beyone me.
My parents cant cope with their mentally and physically ill 44 year old needy daughter and are supportive but its very limited for example my elderly father just came in to see if I was okay and i said No of course not i feel like im dying.....and he just said OH, well try and rest. But im too ill to rest, cant watch tv coz i feel too sensitised and it depresssed me more. I tried to tell him about this website but he wasnt interested and said "Well i hope that means youre not going to go against what you Endo has said and said you should get off those stupid websites, they are just making you feel worse" I said " I have nochoice its either this is I take my Own life". and he just walked away. Im so alone is all this......maybe its is complete depression and anxiety and nothing to do with my Thyroid anymore. Oh i just want to give up.
But Im even feeling despondent on this website because i feel that the regime youre describing doestn fit my situation. I mean my ft3 is great, my adrenals are fine, i dont have celiac disease, my female hormone levels were okay.My testoerone was okay as well. Although i dotn beleive its not hormonal as I have the most terrible PMS and onl feel normal for two days of the month, one day during ovulation and the day I get my period but my periods are on time every 28 days and the Endo said Im not even perimenopausal yet.
any how here are my labs.....just for background information my worst Graves labs in 1999 were ft4 57, tsh 0.02 and ft3 27 ranges 9-19, 0.4-4.0 and 2.5- 6.0) and my worst Hypo labs in March this year were ft4 5.2 tsh 28 and ft3 2.1.


anyway current tests are ....

3/11 ft4 15 tsh 0.58 ft3 4.6
10/11 ft4 15 tsh 0.88 ft3 4.6
17/11 ft4 16 tsh 1.1 ft3 4.6
24/11 ft4 14 tsh 1.6 ft3 4.8
3/12 ft4 15 tsh 2.9 ft3 4.2
10/12 ft4 15 tsh 2.0 ft3 4.7
16/12 ft4 17 tsh 2.5 ft3 4.2
23/12 ft4 15 tsh 2.0 ft3 4.4
29/12 ft4 17 tsh 1.8 ft3 4.8

oh and i have it ta ken as the same time of day and have my meds in morn with no food or anything near by.
any light you can shed on this would be great. I cant cope with this poor quality of life. I have been so patient and tried everything. Im seeing a psychologist and working through aan anxiety/depression programme but Im sure its not all psychological because the physical symptoms change all throughout the day and i always feel more energised, alert, and happier at n ighttimes. Ive definately go issues around where I belong, why am i different to everyone else, wheres my place in the world, where is my life going, what is the point of anything that ive failed my life and havnt acheived much, that Im unloveable etc. so i am trying to work through all that as well.

please help as what i can do next.if this is my life, i dont want it. I feel like I have noone or nothing. My freinds cant cope with it all and I can only work part time but due to anxiety this is so hard.Im tired of crying all the time. Im tired o my life. I have been fighting through this for too long. and to think I beelived everyone when they said i woudl feel so much better once my thyroid was addressed. To think two and a half years ago I was in las vegas on holiday on my own happy, calm and energetic. ( abeit when i came back thats when my tests discovered i was complelety Thyrotoxic - bloods were ft4 37, tsh 0.02 and ft3 4.10 and i felt really good!!) oh the irony....

i dont know . what do you think i should do next. I feel so trapped. Like i have no more options left.

Thank you for any support you can give.

Lauren in New Zealand

Re: Thyroid Thread - Part Deux
 

Hi Lauren
It seems you're getting some help on the about.uk thyroid forum ... the lady who's responding to your posts is pretty much an expert in your condition - something which I am not. You might want to check out her book?

I'm interested why you think what they're prescribing for you won't work... it seems it might be in your interests to commit to trying the ideas on that board for Graves... and at least give it a try, given what you're doing now isn't working.

The reliance your doc has on TSH results is well, not uncommon. As we've said before, it's finding where you are well by increasing your T4, not relying on numbers to tell you when you're well.
I think you're receiving some excellent advice from the about.thyroid boards so advise you to stick with that, hard as it may be. You're obviously determined so keep going with it and see how it works for you.

Re: Thyroid Thread - Part Deux
 

Wow I just caught up with this thread! Been bumbling along myself for a few months, not feeling great but too focussed on other things (Dad diagnosed with prostate cancer, PR app, restructure at work, friend going through a breakdown...and my doctor said my cortisol levels point to me being stressed? Bwahahaha :rofl: ) but I've got a new doc so thought I would come on and mention him.

Hi Lauren, so sorry to read about your feeling so low. Mrs J and Tiddly are a fantastic support and very knowledgeable so do listen to them. I won't repeat what I'm sure I've repeated several times already on this thread about my situation but my bloods are "normal" according to some docs, including an endo, and I was even offered anti-depressants by the first one I saw in Sydney when I said I had insomnia. :rolleyes:

Of course you feel down because you feel absolutely crap! I can't speak for the other ladies but I know when I am feeling unwell everything is a big deal, I don't cope with stress well, I don't sleep, so I don't feel well, so I don't cope with stress well, so I don't sleep...once you get into this cycle it's hard to get out of it.

Only you know how you feel - doctors can only do so much, and it's trial and error with the dosage, so keep hassling the docs and persevere. I went from 60mg to 90mg and got the shakes; I've now settled on 75mg. Still don't have a lot of energy but I have other issues too, and I've been too busy to concentrate much on a good diet and looking after myself. This month I'm trying to put that right.

I was seeing Dr B but I didn't feel she was right for me with respect to non-thyroid issues, so I have recently changed to Dr Alex Yao at Royston Clinic in Asquith, about an hour up the train line from Sydney. He's very like the doctor I was seeing in Singapore, practises Integrated Medicine, and has done some tests that Dr B did not. Still early days and a bit "try this and see" but so far, I'm very impressed.

Anyway, hope all Thyroid Chicks are looking after themselves. xxx

Re: Thyroid Thread - Part Deux
 

Your doc sounds great SS. Can I ask what he tested for?

I'm doing great thank you... healthy, happy, thyroid under control... though I do wonder if there's anything more I could do. You know... :D

I recently started on a mineral supplement, which is an organic high dose one. After about a week, I noticed my nails weren't breaking as they usually did.
After a few weeks, my nails have gone off the chart in length and strength... funny how minerals are one of those things you can be lacking and not even know about it... I've had easily ripped nails my whole life and always thought it was just the way they were... Nope!

Diet and exercise are all good though I've got to cut down on nice dinners and wine with my bloke... :D Hard to do though. I have just upped my exercise by skipping.... fast boxer-type skipping. This is because my chiro told me it would improve my injured rotator in my shoulder... and it does. Not only that, you don't have to go 'out' to do it, so it's something I can do whilst my kids are here.. Just step onto the veranda if it's raining or too hot... Really great exercise! You see kids skipping like it's nothing... I used to when I was a kid but blimey, it's hard when you start. Very good for you - rapid results!!!
I'm also playing squash and tennis with my partner. I'm notoriously bad at tennis but I'm improving rapidly.

It's so true about feeling crap - if the body chemistry is out, then you're stuffed mentally and physically. It's a double whammy... but sort that out and bingo!

It's an ongoing thing though isn't it?! You never stop trying new things or doing the research. It's the only way to stay healthy. I'm glad you're doing ok with your new doc. Finding one with an open mind is the only way to go.