Anyone with Fibro diagnosis who also ... - Fibromyalgia Acti...

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Anyone with Fibro diagnosis who also has Thyroid disease?

mcdermott
mcdermott

I was diagnosed with FM 2007. I have struggled since then, getting worse. I felt that my symptoms also matched those of hypothyroidism especially Hashimoto’s. I have been fighting to get the right treatment for Hypothyroud disease ever since. All I can achieve is a low dose of thyroxine. I feel that GP/Endos write me off for thyroid problems and that the Fibro diagnosis has prevented me from getting the right treatment in order to feel well. Thanks for any help you may be able to offer.

11 Replies

Hello Mcdermott

My best advice would be to post about this in the HealthUnlocked community ran by the charity Thyroid UK - click here to join healthunlocked.com/thyroiduk

We do have some articles about Thyroid here if you are interested you can search the community, here's one post that might be of interest;

healthunlocked.com/fibromya...

The connection between the two conditions if any is a polarised debate so usually we signpost you to Thyroid UK to find out more

Hope this helps

Emma :)

mcdermott
mcdermott in reply to Mdaisy

Thanks.

Yes joined Thyroid UK this time last year. Just wondered if anyone on here can throw any light too. See my reply below for test results. 😀

Marz
Marz in reply to mcdermott

Cannot see your results 😊 Will take a look on Thyroid UK ...

mcdermott
mcdermott in reply to Marz

Hi Marz, how are you?

Must have lost my post somehow. Hopefully there now.

I’m hypothyroid and have fibro. I’ve had hashimotos for at least 12 years, was diagnosed with fibromyalgia this year but been in pain for a good 3. Have you had blood tests? TSH,T3,T4 ect?

mcdermott
mcdermott in reply to xdianex

Yes. TSH 1.0 (0.5-4.4) T4 15.9 (10-20) T3 5.1 (3.5-6.5). Recently increased from 25mcg to 50 mcg levo.

Marz
Marz in reply to mcdermott

I have seen worse 😊 The 75mcg is still a low dose. Hopefully you will soon feel stronger with the increase. Re-test in 6 weeks and hopefully get another increase. Have you had anti-bodies tested to rule out Hashimotos ?

Am assuming these tests were done when taking 25mcg. Early morning test is best - fasting and no Levo for 24 hours before test. All patient to patient tips ...

I do not think the Docs are writing you off - their understanding of thyroid is poor judging by what I read on TUK.

How is your VitD ? Folate - B12 & Ferritin too ?? Many of us are THR - Thyroid Hormone Resistant - which means Thyroid hormones do not get into our cells. Research currently taking place at Addenbrookes - to trace the genes responsible.

mcdermott
mcdermott in reply to Marz

No it’s 25 up to 50. Dr Skinner wanted me on 100 in 2007, but GP reduced when TSH dropped below. Then stopped it altogether 2 years ago. Only on 75 for few weeks 2007!!! GP will only test once a year, I’ve insisted on 3 Endo referrals for second/ third opinions and had tests, which are shown here, taken on 50mcg in September. Vitamin D 112 (24-167) Folate 8.6 (3.0-17) Ferritin 75 (12.0-300) March. B12 Oct last year 704 (190-800). I’ve been supplementing all fir past year. Antibodies 1300 consistently, not tested recently, docs say no point as they won’t change.

Thanks xx

Marz
Marz in reply to mcdermott

Your vitamins and minerals look good :-) Having anti-bodies re-tested is not important as they can vary. Once you have them then all you can hope for is that they reduce.

You are still on a starter dose of Levothyroxine - so make sure you are re-tested 6 weeks after starting the new dose - to give time for the hormones to work. You must ensure you read up on how the just having the TSH is a poor indicator of thyroid function - it is the FT4 and FT3 that are important as I am sure you know !

I suggest you read up on Thyroid Hormone Resistance. It is possible you need to add T3 to your thyroid medication. What other meds are you taking ?

mcdermott
mcdermott in reply to Marz

Thanks. The thyroid tests were done in August and no one will re-test saying TSH in range as they always do (my GP will only test yearly). Thankfully I pre-empted this and asked for two more Endo referrals, one locally and another recommended on TUK an hour and half away. The first agreed with me that TSH needs to be in lower end of range which it was - at 1 (previous Endo said ANYTHING ‘in range’ was OK, he was also very rude and said I was a hypochondriac! I complained to NICE, CCG, and PALS to no evail!!!!). I have also seen the other Endo this month and I’m having tests done there next Saturday, but I won’t see him until January (if he’s available!). He was very nice and understanding but I doubt if he will increase dose as he also repeated that guidelines imply that I would be at risk of heart failure, something I have been told several times in past 9 years! There is no regard for the T4 and T3 results as long as ‘in range’! I have also been told that T3 is not an option. Not taking much else really, I am in pain all the time, but meds cause constipation to worsen, under several departments in hospitals. I had a tumour removed from nerve in spinal canal in April. I have struggled with a whole raft of symptoms and have not had a good nights sleep since 2006/7, often awake all night. Tried lots of meds etc for everything, but all they seem to do is make things worse. Medical professionals just pass me around, all avoiding cost no doubt! I will read up about thyroid hormone resistance, thanks xx ☺️

I have a diagnosis of fibro and a goitre. I have some of the symptoms of hypothyroidism but GP and NHS endocrinologist weren't interested in doing anything.

When I'm particularly tired, or having a little t of fibro pain the goitre gets bigger, is very hard and noticeable.

On a good fibro day the goitre is barely noticeable.

I can see there's a connection but what I can do about it I'm not sure.

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