Fibromyalgia

[Sylvia22]

I have Hashimotos and also Fibromyalgia. I have never been diagnosed with Fibromyalgia but aM sure that is what it is. Since my Levothyroxine has been reduced a bit I get ore flare ups. Haveone now. Can't think what triggered it. Have had less energy since reduction in Levothyroxine. I am seeing Endocrinologist in two weeks time. How can I convince him that lowering my dose has made me worse. If he offers Adrenal test I will have it.

[Judithdalston]

Any blood tests re TSH, total T4 , free T4 and free T3, plus antibodies, and ideally B12, D3, folate and ferritin? I have hypothyroidism ( Hashimoto's for 12 years) and fibromyalgia. Fibromyalgia is really a diagnosis of exclusion ie making sure nothing else might cause the symptoms ( in my case extreme pain, stiffness, exhaustion, difficulty sleeping at night though tired). I had X-rays, MRI and ultrasound scans, various blood tests, physiotherapy before a rheumatologist diagnosed the fibromyalgia last May. So I would get the 'fibromyalgia' checked out. However because pain relief/ management is the only remedy for fibromyalgia I have gone down Dr Lowe's route ( see his archive. Http://drlowe.com/Q&A/askdrlowe/whatisfm.htm)- believing fibromyalgia is in fact under treated hypothyroidism, and now adding T3 to my levothyroxin.

[Sylvia22 in reply to Judithdalston]

Thank you Judith. I think it has got worse as they have decreased my Levothyroxine by 12.5 per day. Any adjustments to my dose make a big difference to me. They did that because my T4 is top of the range and my TSH almost nonexistent I was on T3 about 12 years ago but I became overactive and was very unwell because they would not believe me when I told them it as my Thyroid I had to go privately to get sorted out they never listen

[Judithdalston in reply to Sylvia22]

So what did the private doctor do to sort you out? I have found T3, added to my Levothyroxin, to be very sensitive, perhaps because I am chopping up 25 mcg pills they are not very accurate each time. But I am sure you know adding this would solve your doctor's concerns re high T4 and low TSH. I have had to join the ranks of the self medicated to at least try to see if T3 will help my fibromyalgia - definite improvements so far ( eg husband said I seemed perkier today), though I had a painful disturbed night.

[Sylvia22 in reply to Judithdalston]

Private Doctor told GP I was very over medicated for thyroid and so they stopped T3 In meanwhile my private Doctor put me on Venalafaxine to quieten my nervous system down. Maybe if I had had good advice with T3 it would have been OK. I feel so confused about the whole thing just now.

[Sylvia22]

My TSH is almost undetectable and my T 4 27. They are frightened of me getting osteoporosis and heart problems. I just know I have felt so tired and had this Fibromyalgia on and off for last couple of years or more.

[ShootingStars in reply to Sylvia22]

Hi Sylvia22. I'm assuming you mean FT4 and that's not Total T4, the wrong test? If it's FT4, you don't state your laboratory range, but from some other lab ranges I've seen on her that go up to near that number, 27 is way beyond the top of the lab range. What is your FT3 level? There are two thyroid hormones, not just one. They work together, so they are tested together.

[Sylvia22 in reply to ShootingStars]

Hi my T3 is 4.6

[Nanaedake]

I would ask your doctors to rule out reasons for your musculoskeletal pain as there could be many reasons and it needs investigating. Point out that being undermedicated can also slow down bone building so you need to be on correct dose of levo but also need to find out and treat your pain correctly.

[Sylvia22 in reply to Nanaedake]

Thank you.

[ShootingStars in reply to Nanaedake]

Yes and particularly could be Hashimoto's in general, high antibodies, and being improperly medicated.

[SlowDragon Administrator]

Essential to test FT3 and FT4 alongside TSH

Do you have high thyroid antibodies? Ever had TPO and TG antibodies tested

Essential to also test vitamin D, folate, ferritin and B12. Low vitamins are extremely common and can badly affect Thyroid or cause symptoms in their own right

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting.

If on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances too, especially gluten. So it's important to get tested.

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

[e-mail]

Professor Toft recent article saying, T3 may be necessary for many otherwise we need high FT4 and suppressed TSH in order to have high enough FT3

rcpe.ac.uk/sites/default/fi...

[Sylvia22 in reply to SlowDragon]

Will get that printed out. THanks. I was diagnosed with Hashimotos in 1998.

[SlowDragon Administrator in reply to Sylvia22]

So it's likely you have low vitamin levels.

What vitamin supplements do you take?

Have you got recent results for vitamin D, folate, ferritin and B12

If not, will GP test? Or suggest you get full private testing

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

[Sylvia22]

Thank you. It is a disgrace how they treat us

[Sylvia22]

I am having a blood test a week before I go to see endocrinologist. I am already Gluten free by choice. I still use cow's milk and eat cheese.

[BeansMummy]

To be honest, I wouldn’t want a diagnosis of fibromyalgia on my medical file. Once it’s there, I feel that doctors think it’s OK to ignore any further testing or help, which is immeasurably depressing for sufferers. As far as I am concerned, fibromyalgia is a symptom and not a diagnosis.

There may be many causes for it as well. My so-called “fibromyalgia” disappeared once my severe vitamin D deficiency was addressed, I was given B12 injections, my levothyroxine was increased and the residual symptoms cleared up once I started taking T3. My GP thought it was a miracle. It wasn’t, it was common sense.

[Marz]

I was diagnosed with Fibro back in 2000 by a Consultant Rheumatologist. Diagnosed with Hashimotos in 2005 and so my journey began .... I still have tenderness around key joints - possibly due to being undiagnosed with Hashi's for far too long !

I feel inflammation needs to be lowered in the body to decrease pain so diet is KEY. Many foods are inflammatory and we all know when we have eaten the wrong thing - well mostly 😊

[ShootingStars]

Hi Sylvia22. Once long ago I was told I had "fibromyalgia". Years went by. Then I found out what I really had: Hashimoto's. I started T4 and T3 treatment and brought my FT3 and FT4 up to the optimal part of the lab range. I went gluten free. Soon I added soy and dairy to my "no" list. Well wouldn't you know it but before long my "fibromyalgia" vanished into thin air, never to return again ever again. I've kept my Ft3 and Ft4 up where they should be at an optimal level ever since and have seen hide nor hair of that pesky "fibromyalgia"

I've heard the same story from too many people to count. Turns out they they too actually had untreated or under medicated Hashimoto's, or some other autoimmune disease besides Hashimoto's. Their fibro was miraculously cured by the right type and right dose of thyroid medication. The non thyroid disease people with a different autoimmune disease cured their fibro with the treatment for their autoimmune disease, and going gluten, dairy and soy free.

The big question for you is: Are your current complete thyroid labs all in the optimal zone of the range? Are you up in the right zone where you don't really have any symptoms, or do you still have hypo and autoimmune symptoms? Is one or both hormone too high or too low? Is one over the top of the range? Is your TSH too high? What are your current levels of both antibodies, TPOab and TGab?

[Sylvia22 in reply to ShootingStars]

Thing is they have lowered my Levothyroxine. Won't listen to me

[BeansMummy in reply to Sylvia22]

If they won't listen to you, you end up doing what many of us (including me) do - we get it dealt with ourselves. No, we shouldn't have to, but relying on an unhelpful doctor won't get you anywhere unfortunately