Fibro and underactive thyroid - and Hello

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Fibro and underactive thyroid - and Hello

Postby kittenblue » Mon Aug 10, 2009 2:12 am

I have only recently become aware that it is common for fibromyalgia sufferers also are more likely to have thyroid problems too. I was diagnoised with underactive thyroid in 1993 then developed fibromyalgia in 2003 after a car accident im wondering if i would have got fibro even if i had not had a accident. I find my pain and fatigue hard to manage but is it because of having both conditions. I was wondering if there are many others in the same boat ???
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Re: Fibro and underactive thyroid - and Hello

Postby *Lisa* » Tue Aug 11, 2009 4:38 pm

:wave:

I know of a quiet a few sufferers of Tyroid & FM...

See here....

http://www.fibromyalgiasyndrome.co.uk/f ... yroid.html
As a Public Moderator & Admin 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...Lisa
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Re: Fibro and underactive thyroid - and Hello

Postby smoky » Wed Aug 12, 2009 7:00 pm

hi there
I probably (though not definitively diagnosed) have fibro; I also have underactive thyroid and yes some of the symptoms overlap;
however if you are certain you are not on a dip and your thyroid is being well managed then you should not have pain etc or fatigue; I am very unstable still but this summer my doc finally agreed to increase my thyroxine despite being in the 'acceptable' band; for the first time in yrs I have not gained weight over the summer and spent it in a daze ; (the thyroid has to work harder in the summer due to processing vitamin D from the sun)
The pain however has continued and I am now certain it has nothing to do with my thyroid issues :)
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Re: Fibro and underactive thyroid - and Hello

Postby matthew » Fri Aug 14, 2009 10:54 pm

I have an underactive thyroid that went undiagnosed for a long time. When I was diagnosed my Dr consulted a biochemist as the results where confusing, but he didn't say why (he said it wasn't an auto-immune response though). I understand the main thing thyroxine boosts is the thyroid stimulating hormone (TSH), but I'm not sure this isn't the end of the matter, as I've heard that some times people with an underactive thyroid don't feel normal again when their TSH is at a 'normal' level. It has been proposed by some doctors, as smoky found out, that increasing the dose above normal makes people feel better.

On an unrelated note, when I looked at a print-out the Dr gave me when I was diagnosed with FMS I had 4 triggering factors: thyroid, hyper-mobility, stress and insomnia. So it's really no wonder I ended up with it. :?
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Re: Fibro and underactive thyroid - and Hello

Postby motherelephant » Tue Aug 18, 2009 6:36 pm

I was diagnosed with thyroid problems 4 years ago and never felt well since.I have had fibro for 40 years .I am struggling terribly with fatigue at the moment and am also having other symptoms,even though my levels are at the upper end of normal they still wont increase my thyroxine.Last night my Gp refered me to see an endocinologist ,his words were pituitry tumour.
I have been put on the fast track appointment system . Although I doubt this is the case at least Now I get to speak to a specialist about my thyroid.I have also heard that people do better on a higher dose of thyroxine.I have gained an enormous amount of weight (this is also down to poor mobility with the fibro ) but my food intake is low ,before the thyroid problem i managed to keep my weight under control. As I have had fibro for 40 years i can usually distinguish between it and other problems ,its the medical profession that want to put everything into the fibro box.Motherelle.
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Re: Fibro and underactive thyroid - and Hello

Postby Ange » Tue Aug 18, 2009 7:08 pm

The trouble with Thyroid medication is the rules governing the 'ranges'. So, 90% of the time, your GP will tell you you are 'within range' or 'normal' and you be nothing of the sort. It makes me so mad...:(

Liken your thyroid and it's workings to your central heating system. Boiler is the thyroid. Pituitary gland is the thermostat. Radiators are arms, legs, metabolism etc etc....the body.

So, when the boiler (thyroid) is sending out enough hot water (thyroxine) to the radiators (the body), the thermostat (pituitary gland) sits there and does nothing. It doesn't need to send any signals out cos the water is hot and the rads are hot enough.

If the boiler (thyroid) is failing, and the rads (body) isn't getting enough hot water (thyroxine) then the thermostat (pituatory) keeps clicking and saying, look lets have some more....we need more....

So.....the pituitory gland sends out a signal....Thyroid Stimulating Hormone...TSH, asking for more thyroxine. When none is forthcoming, it send out more signals to the thyroid.

The 'range' in the UK for the TSH is between 0 and 5. Mine at the mo is 2.75 and I'm on 100mcg per day. In America, they have cut the range down to 0 to 3....cos if you are anywhere near 3 then you feel ill....end of. To feel well you need to be at nearly 0. If you are normal and well then your pituatry wouldn't have to send out signals demanding more and more.

the T4 range is what amount of thyroxine is in the body. That goes between 12 and 24. To feel well you should be near the 24....maybe 23 or 22.

I can't get through to my GP that I need more. I am now 3stone over weight and can't shift it. My eyebrows will soon have disapeared, and my hair is thinning. I doze off at 3pm and wake each night at around 3am. My body temp on waking is very low.

I'll just bet now that if any of you go back to your GP and ask what your results were, they will be near or over 3 for the THS.

Go and ask....they have to tell you if you ask, and don't settle for ...'within range' or 'normal'.

If they just give enough thyroxine to keep us going, then it is less stress on their resourses....:(:(

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Re: Fibro and underactive thyroid - and Hello

Postby smoky » Wed Aug 19, 2009 9:21 am

aargh!! How lucky i feel to be here in france and with a sympathetic GP. For the first time in YEARS and hubby confirms this, I feel well (me - before thyroid)
In the uk it took me 6 months and 3 visits to my doc b4 he reluctantly agreed to test me (largely due to hubby being with me and insisting!!) When the tests came back at 2O he didnt contact me but waited for me to contact him. I was put on 100mcg thyroxin and left there during the whole of my time in the uk despite telling docs every summer that i felt lousy (i was told that as i knew the symptoms i was Hypochondriaising them onto my self when there was really nothing wrong.)
On arrival in france i was told to increase my dose to 112.5mcg and then last summer I was increased to 125mcg. This summer, after explaining my symptoms to my gp and that I had felt so much better last autumn, she agreed to up the ante to 137.5mcg - for the first time in ages I have not gained weight over the summer; in fact i think i have lost some :D I haven't slept in the day for several weeks and my hair has stopped filling a plughole every time i shower!!
It is sooo important for docs to listen to their patients and to accept that a 'healthy band' is just a guide; some people will need to be at the bottom end of the scale, some will be ok at the top; also many will fluctuate and it may be that they will need to have more than 1 blood test a year to monitor them more closely;;;
Fight your docs in the uk; it is your right to feel well and not fuzzy all the time!! :grouphug:
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Re: Fibro and underactive thyroid - and Hello

Postby motherelephant » Wed Aug 19, 2009 3:55 pm

No wonder im feeling ill my level is 4.5 i just keep being told its within the normal range.hopefully this is what is causing the horrendous fatigue and not something more sinister as my Gp is suggesting.In february when i was tested it was at 2 .Over the summer I have gradually become iller and iller ,i have never been seen by an endocrinologist in my opinion this should be routine as Gp cannot be expected to be specialists in everything.
Im really pleased for you smokey that you have found a gp who is caring.Motherelle.xxx
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Re: Fibro and underactive thyroid - and Hello

Postby smoky » Wed Aug 19, 2009 6:18 pm

motherelephant wrote:No wonder im feeling ill my level is 4.5 i just keep being told its within the normal range.hopefully this is what is causing the horrendous fatigue and not something more sinister as my Gp is suggesting.In february when i was tested it was at 2 .Over the summer I have gradually become iller and iller ,i have never been seen by an endocrinologist in my opinion this should be routine as Gp cannot be expected to be specialists in everything.
Im really pleased for you smokey that you have found a gp who is caring.Motherelle.xxx

MOther elephant you must insist on an increase; were you aware that summer sunshine (yes i know you didnt get much this year in blighty - but still more than winter)requires the thyroid to work harder and some of us are very susceptible to this; this is probably why you are getting worse over the summer;;; :D
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Re: Fibro and underactive thyroid - and Hello

Postby motherelephant » Wed Aug 19, 2009 8:54 pm

I remember something vaguely being said before but i wasn't really listening .We had 10 dys in sicily visiting family so plenty of sunshine there and this year would you believe i have been trying to take more sun as i thought it would help with the fibro.I was trying to get some natural vitamin D into my body.we just cant blooming win can we .Thamks smokey hopefully the specialist will increase my dosage .Motherelle xxx
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Re: Fibro and underactive thyroid - and Hello

Postby princess » Wed Aug 19, 2009 9:19 pm

Sending you :hugs: motherelle
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Re: Fibro and underactive thyroid - and Hello

Postby motherelephant » Fri Aug 21, 2009 6:45 pm

Thankyou nprincess sending you a hug back. :hugs: motherelle.xx
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Re: Fibro and underactive thyroid - and Hello

Postby kittenblue » Mon Aug 24, 2009 2:15 pm

thankyou for the info......

I feel so confused with all the medications Im on. Every time I get checked my thyroid level is "slightly off" I then get asked am I being complient with taking my meds, what you are saying makes sense now i was begining to think I was going mad. Im on 125mg thyroxine and on 150mg fentanyl patches as well as dihydrcodine and tramadol, I was taking amitprytaline for sleep but i didnt like the way I felt the da after. Im now also taking gabapentin 300 of which I have to gradually increase from one a day to 3 then so on. I am so fed up and lost as to what to do. I feel bad for my kids who have to put up with a mum who sometimes has to let them down like trips out which I have to canx when Im really bad..Im on my own since I developed fibro my hubby left me and we lost everything. I have been coping on my own for the last 4 yrs I want to feel normal for my kids sake.............sorry for going off on one there . Should I now suggest to my gp about the thyroid issue? :oops:
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Re: Fibro and underactive thyroid - and Hello

Postby motherelephant » Mon Aug 24, 2009 4:56 pm

Hello kitten if they are asking you if you are taking your meds as recommended then your levels are not what they should be.Ask the dr what your readings are and write it down.It can take quite a few years to get it level.I have been on thyroxine for 4 yrs and its still not right.Thyroxine fluctuates in the body even in people who dont have a problem.And as we now know summer affects some of us .
Ask the dr if your results are in the normal range.I f you are still having bad symptoms then tell your dr this ,people with fibro sometimes get put into a box and everything is put down to this.Illness can be missed ,unfortunaely we have to work harder than other people to be heard.Good luck with everything ,hopefully it will be sorted soon.Big cottonwool hug Motherelle.xx :hugs:
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