Endocrinologist in UK interested in Fibromyalgia

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Endocrinologist in UK interested in Fibromyalgia

Postby LYNPI » Thu Jun 05, 2014 8:17 pm

Hi All

Does anyone know of a UK Endocrinologist who has an interest in Fibromyalgia and the thyroid. I've read loads of articles on the relationship of an underactive thyroid and fibromyalgia. My thyroid keeps on going boarderline and I would love to locate a consultant who I can try and get a referral to. :lol:

Many thanks
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Re: Endocrinologist in UK interested in Fibromyalgia

Postby whoami » Thu Jun 05, 2014 9:05 pm

Sorry I am in Canada.

I have had my thyroid removed due to cancer. My Endon seems to think that there is a relationship between fibro and the thyroid. Not the fact that I gotvthyroid cancer but in general.

There are a lot of fibro patients with thyroid issues. I just wonder how many Fibro patients that have not had a thorough thyroid test, not just the tsh, actually have a thyroid issue.

Ask your Dr to refer you to an Endo.
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Re: Endocrinologist in UK interested in Fibromyalgia

Postby nicola75 » Fri Jun 06, 2014 8:45 am

About 18 months ago I was told my thyroid was borderline underactive,
I was then tested again about 6 weeks later and my tsh
Had gone up and i was started on levothyroxine a low dose
To start with of 25mcg.

My tsh kept going up and my doctor kept increasing
My dose, anyway it had started to go down but i was still feeling really bad all
The time, so I did some research and had to ask my doc to test my antibodies
She did eventually, they came back at over 1300!

She then told me that i'd have to see
An endo, anyway she refered me but was told that my antibody levels were only
That high because i had an underactive thyroid and didn't need to be seen by the endo!
it was a good job i had done
My research cos i knew this wasn't right!

I had to fight to get the endo to see me
When i did eventually get my first appointment i went in ready to fight my corner cos i've
Heard so many stories of people being fobbed off! Anyway he asked lots of questions
And so did i, he told me that i have hashimoto's. I have only ever had my
Tsh levels tested, they keep telling that the labs won't do the t3 or t4 test!
Anyway i still feel rubbish, my tsh had started to go down but is now
Starting to go up again.

I think there definitely is some link with the thyroid and fibro, but good luck with finding a good
Endo who will listen or do the tests we need cos everyone i know who is struggling with thyroid issues
Says the same....their endo just won't listen or do the tests.

Sorry for going on, just makes me so mad, so many people suffering when they dont need to be.
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Re: Endocrinologist in UK interested in Fibromyalgia

Postby whoami » Fri Jun 06, 2014 10:10 am

Did the Endo not say why labs won't do thyroid levels?
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Re: Endocrinologist in UK interested in Fibromyalgia

Postby LYNPI » Fri Jun 06, 2014 9:10 pm

Thank you so much for coming back with a response. I am lucky as I've asked for a copy of my blood results from last seeing my Rheumatologist. If it is still boarder line, I am going to also 'fight my corner' and get to see and Endocrinologist. Unfortunately the ones in my area have no special interest in thyroid and Fibromyalgia and I am happy to travel the country to find one.

Interesting about the T3 and T4 levels not being tested as routine. :nono:
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Re: Endocrinologist in UK interested in Fibromyalgia

Postby nicola75 » Sat Jun 07, 2014 10:16 am

whoami wrote:Did the Endo not say why labs won't do thyroid levels?


My doctor just said that it costs too much to do these tests
I've tried to argue my point but they're not having any of it!!
I've asked for my medication to be changed to but they won't
Don't know what else I can do or say to them now getting so fed
Up of feeling like this :(
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Re: Endocrinologist in UK interested in Fibromyalgia

Postby nicola75 » Sat Jun 07, 2014 10:19 am

LYNPI wrote:Thank you so much for coming back with a response. I am lucky as I've asked for a copy of my blood results from last seeing my Rheumatologist. If it is still boarder line, I am going to also 'fight my corner' and get to see and Endocrinologist. Unfortunately the ones in my area have no special interest in thyroid and Fibromyalgia and I am happy to travel the country to find one.

Interesting about the T3 and T4 levels not being tested as routine. :nono:



Good luck I hope you find one hun, keep me posted on how you get on with it all.
X
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Re: Endocrinologist in UK interested in Fibromyalgia

Postby LYNPI » Sat Jun 07, 2014 10:51 am

Hi Nicola

I will get back to you over the appointment with my Rheumatologist and hopefully Endocrinologist. There is an interesting article on the internet by Dr Lowe on the relationship of Fibromyalgia and the Thyroid. Dr Lowe actually looked at his patients and within the report details the % of thyroid results and his fibromyalgia patients. He also mentions other hormones e.g Estrogen deficiency causes problems with fibromyalgia.

Amazingly I have been suffering with pain for many years (plus problems with boarder line the under active, then normal thyroid). No treatment given for this.

Two years ago, I had my second ovary removed (surgical menopause). Within a couple of months, my hands started with pain, followed by feet and this has not stopped ( :cry: ).

Do you get the nighttime pain in your hands and feet (plus stiff hands)? I've lost my dexterity and with that, this has affected my love of painting and framing. I've managed to frame a few paintings recently and hopefully will try to continue and ignore the difficulty.

From my experience, I now believe that the report by Dr Lowe is accurate and I will be taking this report to the Rheumatologist to push to see the Endocrinologist.

Finally, I am no expert within thyroids and treatment, but I notice that some of the reports I have read mention that you can be given T4 medication but some patients will not improve as they require T3 medication.

If you want to know the exact title of the article, pls let me know and I'll search for it.

Kind regards

Linda :-)
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Re: Endocrinologist in UK interested in Fibromyalgia

Postby nicola75 » Sat Jun 07, 2014 11:35 am

LYNPI wrote:Hi Nicola

I will get back to you over the appointment with my Rheumatologist and hopefully Endocrinologist. There is an interesting article on the internet by Dr Lowe on the relationship of Fibromyalgia and the Thyroid. Dr Lowe actually looked at his patients and within the report details the % of thyroid results and his fibromyalgia patients. He also mentions other hormones e.g Estrogen deficiency causes problems with fibromyalgia.

Amazingly I have been suffering with pain for many years (plus problems with boarder line the under active, then normal thyroid). No treatment given for this.

Two years ago, I had my second ovary removed (surgical menopause). Within a couple of months, my hands started with pain, followed by feet and this has not stopped ( :cry: ).

Do you get the nighttime pain in your hands and feet (plus stiff hands)? I've lost my dexterity and with that, this has affected my love of painting and framing. I've managed to frame a few paintings recently and hopefully will try to continue and ignore the difficulty.

From my experience, I now believe that the report by Dr Lowe is accurate and I will be taking this report to the Rheumatologist to push to see the Endocrinologist.

Finally, I am no expert within thyroids and treatment, but I notice that some of the reports I have read mention that you can be given T4 medication but some patients will not improve as they require T3 medication.

If you want to know the exact title of the article, pls let me know and I'll search for it.

Kind regards

Linda :-)



Hi Linda

I will look for the article,if i can't find it i will get back to you. I do suffer with the pain and stiffness in my hands.
Some days it gets that bad all my fingers swell and i struggle to bend them, on a good day it can just
be the my right hand thats swollen and sore, I struggle with my mobility and use crutches so this can make life even more
difficult!

Does the article mention anything about cortisol levels? As mine have been low,
Until 18 months ago I knew nothing about the thyroid, now all i seem to do is reseach it and fibro to try to omprove
My life, but feel like im getting nowhere, i'm a single parent so need to start to feel normal ish again.

Yeah i've read about the same about t4 meds not converting properly and some thyroid patients needing t3 meds aswell or instead of t4,
But the endo's i've spoke to about it won't even give it a try. Feel like i'm fighting a losing battle.

Gentle hugs hunnie, keep intouch be good to know if you can find a good endo out there.

Nic x
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Re: Endocrinologist in UK interested in Fibromyalgia

Postby Eggcustard » Wed Aug 19, 2015 12:49 pm

Hi, I know this is an old post but I was wondering if you ever had any luck finding an endocrinologist or finding out any more information about thyroid issues? I think I am probably going down the same road as you did last year at the moment, I am looking into thyroid issues to see if they are causing my symptoms but I don't know where to start.

I also have endometriosis and I had injections to stop my monthly cycle that affect the pituitary gland, I am convinced this is what caused my symptoms but I am trying to find someone to see who might know if this is possible!!

I hope you are well and have found some help, if you could reply that would be great x
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