thyroid,fibromyalgia,vitamin d low,update on things

For all your questions and experiences of illnesses associated with FM e.g. thyroid, IBS, TMJD etc.

Moderators: perseus, *Lisa*, FluppyPuffy

thyroid,fibromyalgia,vitamin d low,update on things

Postby jan8787 » Tue Jul 03, 2012 1:14 pm

hello
i wrote my last post on here in august 11
at that time i was having seizures or drop attacks,i was not getting any help from my doctor and neuro.the only help i was given was to see a psychologist which i did not want to see as it was not in my head,i had the attacks from may to august and they just stopped.since then i have not had them but i have read a lot of info and found out that people with fibromyalgia can get these attacks.i just wish i had known about this last year.
a few months ago i started to have palpations every day and when i was resting,moving about and sleeping,i went to my doctor who said its all due to the fibromyalgia but i stood my ground and said i wanted tests done and this time i had a 24 hour urine test done,the doctor said it would be fine but it came back with raised adrenaline,i was sent to see an endo who said it could be a tumour,i am waiting on those tests to come through,also it was found i am very low in vitamin d and i was told i had osteoporosis as well,i have just had a bone scan so i am waiting the results on that.
i was wondering if anyone has had the same as me and what the results are.
i had a thyroid funcation test done but only my T4 and TSH done that came back normal,i am wondering what other tests if any i should have.
my calcium,folate,vitamin d 12 is fine and my iron as well.
could i have thyroid as well as fibromyalgia?
my sister a few years ago had thyroid cancer.
thank you
jan
jan8787
UKFM Member
 
Posts: 72
Joined: Mon Mar 02, 2009 7:39 pm

Re: thyroid,fibromyalgia,vitamin d low,update on things

Postby shazq » Tue Jul 03, 2012 5:19 pm

Hi Jan :welcome: back, sorry to hear you are still having problems :hugs:

We do hear a lot of people have thyroid problems with fibro so it is looking likely that there is a link or secondary condition to both, i have mine checked every 6 months because i have asked my Gp about this before and he told me that they are already keeping an eye on it. :dunno:

B12 can be low due to having no sun out :facepalm: our skin absorbs a lot of it through that but its always worth having it checked if you are feeling fatigued as we are not having any summer. :( mine is a bit low
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.
Fibromyalgia Awareness Day May 12TH.
User avatar
shazq
UKFM Veteran
 
Posts: 11449
Joined: Wed Feb 11, 2009 8:16 pm
Location: wrapped up under my duvet at home.

Re: thyroid,fibromyalgia,vitamin d low,update on things

Postby jan8787 » Tue Jul 03, 2012 5:41 pm

Thank you:)
My doctor will not do anymore checks on my thyroid as far as she is concerned the endo did a thyroid function test and it was normal and checked my T4 and TSH that's normal and thyroid perxoiden that is normal so I don't have any problems with my thyroid.
The thing is there is other tests I asked for and the doc refuses to do them, I can't go private as I don't work and hubby works part time now.
So I am stuck just waiting for these last tests and then I don't know what to do.
Jan.
jan8787
UKFM Member
 
Posts: 72
Joined: Mon Mar 02, 2009 7:39 pm

Re: thyroid,fibromyalgia,vitamin d low,update on things

Postby shazq » Wed Jul 04, 2012 4:02 pm

Try not to worry to much until to hear what the results are. :hugs:

Stress will bring on a flare and that will make your fibro worse. Once you get the results you will be able to go through them with your Gp and you will be able to ask him where you go from there & sort out any meds you might need.

Are you on meds for your fibro?
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.
Fibromyalgia Awareness Day May 12TH.
User avatar
shazq
UKFM Veteran
 
Posts: 11449
Joined: Wed Feb 11, 2009 8:16 pm
Location: wrapped up under my duvet at home.

Re: thyroid,fibromyalgia,vitamin d low,update on things

Postby jan8787 » Thu Jul 05, 2012 12:02 pm

I don't use medicines as tried them and made things worse.
I use a tens machine and heat rubs,hot water bottle and heat pad.
it helps.
I will let you know when I get the results.
I got a letter from the neurologist who decided that I have no other problems going on so he doesn't include fibromyalgia as a problem
He explains my problem between a software problem and a hardware problem oh and a functional problem and the best thing for me was
To be engaged in lots of activity eg work.
How on earth he expects me to do that I don't know as I can hardly move sometimes and I have hardly any short term memory.
Thank you
Jan
jan8787
UKFM Member
 
Posts: 72
Joined: Mon Mar 02, 2009 7:39 pm

Re: thyroid,fibromyalgia,vitamin d low,update on things

Postby foxesmad » Mon Jul 23, 2012 6:40 pm

I know that feeling. My short term memory is so poor it is having an effect on my work, and that is worrying me. I need my income. I was only diagnosed last week after suspecting for quite some time that this was what I had. I also have RLS. :swear1:
I sympathise to a point with the medical community as fibro is so hard to diagnose. However there seems so little support out there. My gp is brilliant. She is a consultant occupational medical practitioner. She has given me some suggestions as to therapies (which I can't afford) and suggested I might try various supplements (but that if they don't work within a month I shouldn't waste my money.

My thyroid function is struggling, so I'm on tablets for that. I don't know what else to do. I get outside as much as I can so I really shouldn't have a vit d deficiency. Nor should I have a B12 deficiency (I eat weetabix for my breakfast). It's all so confusing. :crazy:

fingers crossed that over time there will be better awareness and more help as a result.
foxesmad
UKFM Member
 
Posts: 21
Joined: Tue Jan 31, 2012 10:31 pm

Re: thyroid,fibromyalgia,vitamin d low,update on things

Postby jan8787 » Mon Jul 23, 2012 7:43 pm

Hi and thank you for your reply.
I really know how your feeling it's so confusing getting a diagnoise
Your so lucky you have a brilliant GP,i really do not at all want to see a doctor again after what was put in my medical notes and what I saw.
I need to go back again and read more but each time it's a tenner a time for an hour to read and as I don't work it's very expensive.
If any of these treatments help you,could let me know.
My doctor said my thyroid is fine but I have not had all the tests.
My vitamin d level is 24,well below the normal level,and my GP said you can get vitamin d tablets from boots, just not interested at all.
I have now decided to make a complaint about my GP and the consultants I have seen and will be changing my GP as well, although I know I will still have the same problems with a new GP practice but I just have to do it.
I hope you get all the help you need.
Good luck
Jan
jan8787
UKFM Member
 
Posts: 72
Joined: Mon Mar 02, 2009 7:39 pm

Re: thyroid,fibromyalgia,vitamin d low,update on things

Postby FluppyPuffy » Mon Jul 23, 2012 7:51 pm

Jan, for changing your GP, you could try contacting ones in your area and ask about their approach and experiences of dealing with chronic pain conditions. Or, if there is a support group in your area, contacting them for suggestions of who to see, or who to avoid might also help.

Hope you get a decent one soon :fingerscrossed: :fingerscrossed: :fingerscrossed:
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.

If your dog doesn't like someone, then you probably shouldn't either
User avatar
FluppyPuffy
SITE ADMIN
 
Posts: 12719
Joined: Mon Jun 08, 2009 11:25 am
Location: Living Life On The Edge.......Of The Norty Step!!!

Re: thyroid,fibromyalgia,vitamin d low,update on things

Postby jan8787 » Mon Jul 23, 2012 8:01 pm

I am going to do that tomorrow, going to ring around, in this area there is only two other practices, one I rang the other day which is a mile away said i am not in the area and a that's a mile from me so will see what they say.
I have been told there is a support group for fibromyalgia but not in the town I live so I don't know if doctors will take me out of the area.
It's so difficult.i checked the list of supportive GPs and not one in the north east.we live between Newcastle and Northumberland so it's a lot harder.
Thank you
Jan
jan8787
UKFM Member
 
Posts: 72
Joined: Mon Mar 02, 2009 7:39 pm

Re: thyroid,fibromyalgia,vitamin d low,update on things

Postby isitme » Tue Jul 24, 2012 1:19 pm

i think the vit d etc makes alot of sense and will be reading up on it more for supplements to check with gp next time.

on holiday i tend to feel so much as fatigued and pain when in a lovely sunny place and you can go in the pool and do a bit of exerscise sometimes.

how do you go aobut seeing your gp notes would be interestng :?: :?:
isitme
UKFM Member
 
Posts: 301
Joined: Mon Jul 23, 2012 11:30 am

Re: thyroid,fibromyalgia,vitamin d low,update on things

Postby jan8787 » Tue Jul 24, 2012 1:53 pm

I have never been out of the country since having this as we can't afford it.
Where we live we hardly get any sun as we are near the coast,my vitamin d level is very low I think due to hardly seeing any sun.
I just asked the doctor to see some of my notes, I had to pay £10 though and only saw a few.
Will be changing my GP next month and making a complaint about what was said about me.
Good luck in seeing your notes.
Jan
jan8787
UKFM Member
 
Posts: 72
Joined: Mon Mar 02, 2009 7:39 pm

Re: thyroid,fibromyalgia,vitamin d low,update on things

Postby Brambleberry » Sat Jul 28, 2012 7:04 pm

Doctors need to check for Free T3 as well as T4 and TSH. This is because T4 is the active hormone we utilise, T3 must be converted into T4...so fibro people have difficulties converting T3 into T4 so the bloods look normal...but you can be underactive all the same ...most GPS dont know or believe it in the UK...but Dr Teitelbaum has been promoting this issue in the US. I managed to persuade my GP t give m thyroxine anyway but since he is working in the dark he is reluctant to increase it and I think it should be doubled! I am only taking 50mcg so effects are limited.
Brambleberry
UKFM Newbie
 
Posts: 1
Joined: Sat Jul 28, 2012 5:40 pm
Location: Fife

Re: thyroid,fibromyalgia,vitamin d low,update on things

Postby jan8787 » Sun Jul 29, 2012 11:16 am

Hi and thank you for the reply.
Things are so different here in the uk, fibromyalgia they hardly belief that anyone has it, very very few doctors understand it and think its psychology. my doctors I hate them, useless, I read some of my notes and it says I am maligning about everything, it's all made up and I need to see a psychologist, also one consultant put me like between a hard drive and other parts of a computer like sometimes it works and other times it doesn't.
I am making a complaint about the treatment I had and my doctor but doubt anything will happen there apart from them making it harder for me to get treatment as it will be on my notes and hospital records.
Just so sick of been treated like I have a mental disorder when I don't.
This country is going down hill very fast with the treatment of patients.
I know you have to pay for your treatment and we don't but to be honest I would rather live there and get treated as a person
Not a part in a computer.
I am glad your getting things sorted out for you.
You take care.
Jan
jan8787
UKFM Member
 
Posts: 72
Joined: Mon Mar 02, 2009 7:39 pm

Re: thyroid,fibromyalgia,vitamin d low,update on things

Postby jan8787 » Sun Jul 29, 2012 11:28 am

I have been waiting form a letter about my high addrellian levels as I went in June to the hospital to see someone, i get palapations every day,on Friday i got no letter back just my blood tests back. Can anyone here understand them.
TSH result 1.75. Normal range 0.3
To 4.7
Free thyroxine result 13.1
Normal range 9.5 to 21.5
Thyroid peroxidase antibody result 15
Normal range 0 to 34
Plasma normetanephrine result  634
Normal range 120 to 1180
Plasma metanephrine result 307
Normal range 80 to 510
Plasma 3 -methoxytyramine result 79
Normal range 0 to 180.

hope someone can understand them please.
Thank you
Jan.
jan8787
UKFM Member
 
Posts: 72
Joined: Mon Mar 02, 2009 7:39 pm

Re: thyroid,fibromyalgia,vitamin d low,update on things

Postby denys » Sun Jul 29, 2012 2:42 pm

Jan, your results look to be in the middle of all the ranges so you would assume they are normal have a look at this link and see if it explains anything to you http://thyroid.about.com/ I'm not qualified to give advice on any results

Maybe someone else is as I know we have a few health professionals on here :hugs:
Denys

As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.
User avatar
denys
UKFM Veteran
 
Posts: 11901
Joined: Tue Feb 09, 2010 10:05 pm

Next

Return to Associated and Other Health Problems

Who is online

Users browsing this forum: Google [Bot] and 4 guests