T3 Treatment?

[Gsp177]

Has anyone used or has been given T3 treatment to treat their Fibromyalgia? If so have you found the need to suppress your TSH levels and treat according to symptoms?

[Lou1062]

My GP is treating my hypothyroid condition according to symptoms and blood results, Fibromyalgia is a separate condition entirely and is treated as such, I have both and several other conditions xx

[Gsp177 in reply to Lou1062]

Thanks Lou1062, I'm reading a lot of articles by the late Dr John Lowe, he seems to think there's a link between hypothyroidism and fibromyalgia, he found by treating patients with monitored doses of T3 according an individual's symptoms the fibromyalgia symptoms disappeared. He seems to think what people class as fibromyalgia are symptoms of untreated or undermedicated hypothyroidism. Most doctors treat the test results not according to symptoms and many aren't happy about depressing the TSH levels saying biochemically the patient is overmedicated. However in my case, I'm supposedly biochemically overmedicated yet I'm showing no physical signs whatsoever in fact my symptoms are still that of hypothyroidism, CFS and Fibro. I'm beginning to think Dr John Lowe is right but it's convincing my Endo to follow Lowes procedure.

[Lou1062 in reply to Gsp177]

My Neurologist is treating my Fibromyalgia as a separate condition totally unrelated to thyroid function. Both conditions are widely misunderstood by the medical profession generally, I am fortunate in the excellent care I receive x

[Gsp177 in reply to Lou1062]

What results are you seeing under him, are you feeling better?

[Lou1062 in reply to Gsp177]

Very much a work in progress, having difficulty tolerating meds that would help me, physio is keeping me mobile so that's a big plus xx

[Fantastic in reply to Gsp177]

Hi Lou1062 I have also seen the Dr Lowe research and am convinced he is absolutely right . I have PCOS, and Fibro but my TSH levels fall within "normal" . I am currently going down the route of an Advanced Thyroid Profile . Just wondering if you got any joy with getting treatment with T3 . I am in the U.K. . Any help much appreciated

[peck]

I believe this has to do with your thyroid as I have under active thyroid isn't it?? Peck.🐤

[Gsp177 in reply to peck]

Yes, I think it's all connected, all the symptoms fit in with one another, just mainstream medicine seems to like to fob people off with labels rather than treating the underlying route cause.

[peck in reply to Gsp177]

I'm being treated for my thyroid. I take Synthroid 125 mcg. X 1 a day.Peck🐤

[Gsp177 in reply to peck]

Have you found any improvements Peck on that dose?

I'm on 175mcg but my Endo wants me to reduce my dose to 150mcg based on my TSH reading.

Not everyone does well when treated with T4 and I think T3 might well be the answer, just need to prove it...

[peck in reply to Gsp177]

I'm not familiar wish the readings.My gp treats mine.I started out on .88mcg. about 8 yrs ago, about 3 yrs ago raised to 125mcg.I was having problems with sweating, like I wad over heating and gp said was going to liwer my dose but didnt.IThe way I understand Ill be on this med. the rest of my life.Im in the US not UK.Hope that snswrrs your question.ok Peck🐤i

[maggi999 in reply to Gsp177]

Hi Gsp117,

You must insist in the strongest terms that your endo tests your free T3 levels before reducing your meds. If you can, also get them to check your reverse T3 levels, or get them done privately through Blue Horizon via this site.

TSH is a pituitary hormone and a suppressed or low TSH will only tell you for certain the THE PITUITARY GLAND HAS SUFFICIENT T3. It does not mean that your serum and tissue T3 levels are sufficient.

I personally feel better with a suppressed TSH, which gives me a near top of the range T4 and a low end of range T3 using Levothyroxine alone.

I am now self-medicating with T3 medication combined with Levothyroxin which gives me a suppressed TSH, low range T4 and top of range T3. I've only been self medicating like this for 3 months so it's too soon to say if it's improving my health as the fibromyalgia is always there AND I did 12 months of research before taking this step.

My GP has acknowledged that I know more about Autoimmune Hypothyroidism than she does and so will not adjust my meds without my agreement - so it's worth learning as much as you can about your condition, if you are able to.

The other thing you can do is learn about the vitamins etc that are required to enable your body to convert T4 to T3 more efficiently. The sister Thyroid site will help you greatly with this xx

[TheAuthor]

Hi Gsp177

I sincerely hope that you are as well as you possibly can be today? I have pasted for you below a pinned post with information relating to Fibro and Thyroid issues, so I sincerely hope that you find this useful:

About Fibromyalgia & Thyroid Issues

RE: Fibromyalgia & Thyroid Issues

Firstly a passage by FibroAction Founder & Chair Lindsey Middlemiss (2012)

Thyroid issues should be ruled out (or isolated) before a diagnosis of Fibro is made. Does this always happen? No, so some people are mis-diagnosed. Does that mean that Fibro is hypothyroidism? No.

Having said that, having ANY chronic condition seems to increase your risk of having Fibro. This has been especially studied with the rheumatological conditions, such as RA or Lupus, but it also discussed by experts in relation to many conditions, from hypermobility to endometriosis.

Fibro is the end result of what can be a long process in some people. The over-stimulation of the Autonomic Nervous System - that leads to poor response from that system, central sensitisation, disturbed sleep, low levels of available dopamine and from there to the many symptoms of Fibro - can result from any extreme or long-term stimulation of this system (anything that triggers your body's fight-or-flight-type mechanisms). In some people this is linked to a long period of emotional stress, such as an abusive relationship, in others it is linked to compression of the cervical spinal cord, in others it is linked to trauma and in others to a pre-existing condition (even if the Fibro diagnosis came first). If you have a chronic condition, especially one that is uncontrolled, your body is under stress even if you are not aware of it

Questions & Answers

1. Is there or might there be a connection between Hypothyroidism & Fibro ?

Firstly Fibro is NOT a symptom of Hypothyroidism also Hypothyroidism is not a symptom of Fibro

To explain further there are a few possible scenarios to this complex issue to consider;

a) As stated there can be a possible misdiagnosis of Fibromyalgia due to lack of adequate screening of Thyroid profiles here in the UK. In which case the patient would have an actual Thyroid condition rather than a ever having Fibromyalgia

b) As stated above you can have Hypothroidism as a primary condition with Fibromyalgia as a secondary condition and again the Hypothroid condition may have been missed and a diagnosis of only Fibro made. In this situation, we must be aware of our diagnosis and ask that a full thyroid profile be undertaken. If & when the Thyroid condition is medicated the symptoms of this condition will ease and the thyroid condition will be causing less stress to Fibro which may also ease symptoms.. Please note that as the symptoms are so similar it might be hard to make a distinction which condition has improved.

c) Primary Fibromyalgia (without any other illness/condition) can often be misdiagnosed and as stated above adequate Thyroid profile screening should be taken before this diagnosis is made. Unfortunately this does not always happen (as the Thyroid testing in the UK is not as thorough as it should be in our opinion), so again having a full thyroid profile taken is important to aim to rule out any misdiagnosis

d) Even if ALL the necessary steps to have a full Thyroid profile have been taken you may still be subject to a misdiagnosis with Primary Fibro on some occasions, as there are reports that a condition of Thyroid Resistance called Hasimotos can present to the medics as likely Fibro and then during the period of a few years the Thyroid profile may show that in fact you have a diagnosis of Hasimotos NOT Fibro. Of course again I would imagine it may be possible to have primary Hasimotos with secondary Fibro also.

e) Fibromyalgia & Thyroid conditions are considered to be connected in some way but Fibro is NOT just a symptom of Hypothyroidism as Fibromymyalgia is a medical condition in it's own right with Key findings as follows;

These are as follows:

* Increased levels of the pain-transmitting chemicals substance P and nerve growth factor in the spine

* An extreme response to pain in the brain: with a functional MRI scan, the parts of the brain that deal with pain are seen to light up from a significantly smaller pain stimuli in people with Fibro compared to healthy people

* Disrupted stage 4 (deep) sleep, meaning that sleep is non-restorative, even if the person with Fibro sleeps through the night Two studies have shown that artificially disrupting stage 4 sleep in a similar fashion for 3 or more nights in a row will lead to Fibro-like symptoms developing in healthy people

* Reduced availability of opioid receptors, explaining why opioid medications are less effective in people with Fibro

* A subset of people with Fibro have been shown to have positional cervical cord compression, meaning that the spinal cord in their neck is compressed when they lean their head backwards. This finding is still being studied, but this positional cervical cord compression could be a reason for the autonomic nervous system to be disrupted. People with Fibro who have this particular abnormality may benefit from a specific physical rehabilitation program to stabilise the neck, but it is still relatively early days in this area of research

.* Accelerated brain grey matter loss

* Abnormalities in the dopamine systems of the brain, including a reduced dopamine response to pain. As dopamine is thought to act as the brain's "filter", these findings could help explain the autonomic dysfunction and central sensitisation of Fibro. A few medications that boost dopamine in the brain are used as treatments for Fibro (pramipexole/Mirapexin and nefopam/Acupan) and some people do very well with these.

* Changes to the Hippocampus, a part of the brain involved in many processes, including pain perception and memory formation

* Dysregulation of the HPA (hypothalamic-pituitary-adrenal) axis, which is a complex set of interactions between the hypothalamus, the pituitary gland, and the adrenal gland. The HPA axis controls reactions to stress and regulates various body processes including digestion, the immune system, mood, and energy usage

* Dysfunction of the Autonomic Nervous System

* Altered blood flow in the brain

By Lindsey Middlemiss

Please note: I have highlighted the section in bold, as if the HPA axis is reported to be a problem and this it the control centre if you like, of neurotranmitters, chemicals, hormones etc then of course we may see a high percentage of people with Fibro & Hypothyroidism - so this is probably a connection that could be made.

Research Articles:

Pathogenic mechanisms of fibromyalgia

Studies of the entire endocrine profile of fibromyalgia patients support the hypothesis that an elevated activity of corticotropin releasing hormone (CRH) neurons determines not only many symptoms of fibromyalgia but may also cause alterations observed in the hormonal axes. Hypothalamic CRH neurons thus may play a key role not only in resetting the various endocrine loops but possibly also nociceptive and psychological mechanisms as well(Neeck 2001)

sciencedirect.com/science/a...

2. Do we support any campaigns to increase Thyroid testing in the UK?

YES. most definitely

3. Are there any other conditions connected to Hypothyroidism ?

Yes, Lupus, Rheumatoid Arthritis, Grave's disease probably many more

Research Article:

The frequency of thyroid antibodies in fibromyalgia patients and their relationship with symptoms

The frequencies of thyroid autoimmunity in FM (34.4%) and RA (29.7%) patients were significantly higher than controls (18.8%) (p<0.05).FM patients had thyroid autoimmunity similar to the frequency in RA and higher than controls. Age and postmenopausal status seemed to be associated with thyroid autoimmunity in FM patients. The presence of thyroid autoimmunity had no relationship with the depression scores of FM patients (Omer Nuri Pamuk & Necati Cakir 2006)

link.springer.com/article/1...

4. Did having RA make a patient more likely to have Thyroid related issues?

Research appears to support this at this time as does it seems having Fibro could make it be more likely you may have Hypothyroidism

5. Should you consider asking for your Thyroid blood test results if recently diagnosis with Fibro ?

I think it should be considered & if you've only had a TSH then maybe you should think asking for a full Thyroid profile to be taken as this might be helpful

6. Can Fibro be misdiagnosed?

Yes, unfortunately this can happen on occasion due to the Doctors interpretation of the American College of Rhuematology (ACR) criteria as ME patients often can fit into both criteria as can some Fibromyalgia patients fit into theirs on occasion too, as symptoms can be synonymous the same as Fibro can be with other conditions too.

Information

Here's some information on how Fibro is diagnosed:

link to follow

To conclude:

Fibromyalgia is a chronic illness characterised by chronic widespread pain, hypersensitivity to pain (and other stimuli), chronic fatigue and sleep disturbances. Fibro is a type of chronic pain condition, but Fibro patients experience a wide range of symptoms that can wax and wane over time

Fibro can affect anyone. Although it is commonly thought that 80-90% of Fibro sufferers are women, this figure may be an overestimate and men do get it too3. And although a large proportion of Fibro sufferers are aged 35-60, anyone from children to the elderly can develop the condition

Fibro is a surprisingly common condition: it is estimated that between 2% and 4.5% of the UK population has Fibro, which translates to between 1.2 and 2.7 million people in the UK alone. However, this figure has never been accurately measured (it is based on international prevalence statistics and it may be higher.

Pre-existing conditions (even if the other diagnosis comes after the Fibro diagnosis), such as Hypermobility Syndrome, Lupus or Rheumatoid Arthritis can also lead to Fibromyalgia, when it is then often referred to as secondary Fibro.Hypermobility Syndrome in particular is now thought to be a risk factor for developing Fibro

Most researchers agree that Fibro is a central processing disorder with changes in the neuroendocrine/neurotransmitter systems (the systems that transmit messages around the body) and there is an increasing body of evidence to show that Fibro is a Central Nervous System related disorder Fibro is sometimes called a central sensitisation syndrome. Abnormal processing by the central nervous system causes the pain amplification that people with Fibro experience. The changes in the neuroendocrine/neurotransmitter systems also explain many of the other Fibro symptoms (Lindsey Middlemiss FibroAction Founder & Chair 2009)

Furthermore here's a quote from British Thyroid Foundation:

"Our medical adviser's opinion is that there is no clear evidence from clinical literature of a proven link between the thyroid disorders and fibromyalgia" (November 2013)

btf-thyroid.org/

However, as with all conditions research remains ongoing & usually collective studies are best to make any conclusions of any merit. If you would like to read about research please see the following post;

healthunlocked.com/fibromya.......

FMA UK