Update: Fibromilaga: I just saw a rheumatologist... - Thyroid UK

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Update: Fibromilaga

jcarlton76 profile image

I just saw a rheumatologist. He diagnosed me with Fibromilaga. Said he hasnt ruled out psoriatic arthritis but he thinks its Fibromilaga. Im not sure how i feel about it but at least we are treating something, instead of telling me im fine and go away. Anyone have any advice on how to help myself through this? He prescribed some meds...cymbalta and celexa. I pray they help. Thank you

41 Replies

Which are your t3 levels?

SlowDragon profile image
SlowDragonAdministrator

So what were your most recent results and ranges

TSH, Ft4 and ft3

Always test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Vitamin D, folate, ferritin and B12

Exactly what vitamin supplements are you currently taking

Im going to do more blood work in the morning. I didnt know that i shouldnt take my levo within 24 hours so im interested to see how this turns out. Im not supplementing with anything. Im asking my dr for my d vit b and folate and ferritin levels to be checked and then i will look into adding what i need.

SlowDragon profile image
SlowDragonAdministrator in reply to jcarlton76

If your TSH is over 2 you likely need next dose increase

How much levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

Do you always get take levothyroxine on empty stomach and then nothing apart from water for at least an hour after

No other medications or supplements within 2 hours

TSH should be under 2 as an absolute maximum when on levothyroxine

Typically TSH will be around or under one when adequately treated

gponline.com/endocrinology-...

Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.

NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking levothyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Graph showing TSH in healthy population

web.archive.org/web/2004060...

Aim is to bring a TSH under 2.5

UK guidance suggests aiming for a TSH of 0.5–2.5

gp-update.co.uk/SM4/Mutable...

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

tukadmin@thyroiduk.org

I take 200 mcg levo and yes always at the same time same brand etc. I am very diligent but my tsh is 3.14 which in their eyes is fine. I am doing blood work this morning and i have been on liothryonine for several weeks so im interested to see how that turns out.

SlowDragon profile image
SlowDragonAdministrator in reply to jcarlton76

Which brand of levothyroxine

Are you lactose intolerant

Approx how much do you weigh in kilo?

Likely to see significant reduction in TSH on T3

Most important results are ALWAYS Ft3 followed by Ft4

All four vitamins need to be optimal

Fibromyalgia is a cop out diagnosis…..it’s a group of symptoms…not a diagnosis

DippyDame profile image
DippyDame in reply to jcarlton76

How much T3/lio are you taking with the 200mcg levo?

SlowDragon profile image
SlowDragonAdministrator

fibromyalgia often linked to poor conversion of Ft4 to Ft3

healthrising.org/blog/2019/...

thyroiduk.org/tuk/research/...



stopthethyroidmadness.com/f...

prohealth.com/library/new-t...

chriskresser.com/low-t3-syn...

holtorfmed.com/download/chr...

Are cymbalta and celexa both anti-depressents? I wonder why you've been prescribed 2 at once

Cymbalta or Duloxetine as its also known can be used for pain relief, especially nerve pain. Some antidepressants can be effective at helping with conditions other than depression, like insomnia.

They are usually prescribed at a lower dose than for antidepressant purposes. I've just been prescribed Cymbalta for nerve pain. I have fibro.

Cymbalta for chronic pain disease

radd profile image
radd in reply to Alanna012

Alanna012,

SNRI & SSR's can be taken together but I am wondering why two as well. Given the possible side effects v how much pain relief is available, why not try one and if no good switch to another?

jcarlton76

Sorry to hear of your fibromilaga diagnosis. Were you aware you had been prescibed 2 x antidepressants?

jcarlton76 profile image
jcarlton76 in reply to radd

Thank you. No i thought one was an anti-inflammatory. I didnt know bot were antidepressants.

radd profile image
radd in reply to jcarlton76

jcarlton76,

These types of antidepressants have been shown to be effective for helping manage pain for some people.

However, the trouble with using them is they interfere with thyroid hormone meds by reducing overall levels. This in turn may increase the level of pain meaning you need ever increasing doses. They may also alter your mood state and stopping them will mean symptoms just return.

Insufficient thyroid hormone can be indirectly responsible for inflammation and pain. Fibromialgia just refers to a group of painful symptoms and no actual diagnosis & it may be that increasing thyroid meds helps alleviate your pain. Have you started the T3 you were prescribed?

Also, it isn't just about good thyroid hormone labs but making those meds work more effectively and this requires good levels of iron, Vit B12, folate & VitD.

The other thing worth trying to alleviate pain which I previously mentioned is diet, especially as you previously had raised RA markers, ie gluten free, dairy free, processed sugar free.

Didn't you just get prescribed T3 to add to your Levo a few weeks ago ?

hate to say it , but being prescribed 2 different antidepressants to take together sounds like very bad idea to do at the same time as getting used to and trying to adjust a T3 dose to improve T3 levels.

Celexa belongs to a drug class called selective serotonin reuptake inhibitors (SSRIs), and Cymbalta belongs to a drug class called selective serotonin and norepinephrine reuptake inhibitors (SNRIs).

I have just watched someone in my family start on an SSRI (sertraline) .. time will tell if it helps with the anxious and occasionally suicidal state of mind , but the effects for the first week or so on 50mcg were pretty concerning .. didn't move , didn't wash , didn't eat, didn't even drink , had to be peeled out of bed and thrown in the shower by a friend..... no way driving was good idea .. not good at all , horrible to watch .

Seemed to gradually get a better , but after 4 weeks on 50cmcg they increased the dose to 100mcg .. same thing happened again for another week.

Now seems in a much better mood .... but i fear coming off them will no doubt be the same effect as dose is reduced

I found this was a very useful site for understanding any issues related to different forms of antidepressant treatments : mind.org.uk/information-sup...

Celexa is a class of medication called an SSRI. They affect the levels of serotonin. Gut bacteria manufacture about 95 percent of the body's supply of serotonin. Altering levels of serotonin therefore affects gut function which in turn can affect the absorption of thyroid hormones. You may find you need a slightly higher dose of levo as a result.

I would question the diagnosis of Fibromyalgia!

FM is not a disease it is a group of symptoms with no explanation offered.

Antidepressants are frequently prescribed for FM to ease pain and anxiety

Pain and anxiety are symptoms of hypothyroidism

In my case, following diagnoses of FM and CFS, being correctly medicated for hypothyroidism was the answer....long story

You can read my experience in my profile

You may find this helpful...healthrising.org/blog/2019/...

Patients diagnosed with FM are often also diagnosed with Chronic Fatigue Syndrome

frontiersin.org/articles/10...

Higher Prevalence of “Low T3 Syndrome” in Patients With Chronic Fatigue Syndrome: A Case–Control Study

You need to have a full thyroid test to include FT3.

It's important to establish the state of your T4 to T3 conversion

If this is poor ( high FT4 with low FT3) then you would benefit from the addition of ( at least) a little T3

For good health T3 is required by every cell in the body in a regular and constant supply.

I have cellular, rather than glandular, hypothyroidism caused by a form of thyroid hormone resistance. I need high dose T3.

rejuvagencenter.com/thyroid...

Sadly medic's knowledge of thyroid disease is poor and the reason well over 100,000 patients have arrived here seeking help and advice.

Good luck.

I wholeheartedly agree with DD. If you would like to see a visual presentation of the fallacy of claiming that Fibromyalgia is a diagnosis, I suggest that you watch the YouTube Video with the famous US Physician Dr Ann Louise Oaklander.

She suggested that if and when you are given Fibromyalgia as a diagnosis you say to the doctor:

Thank you for summarising my symptoms, could you now give me the diagnosis. ?

I have a question, before you became hypothyroid, did you also have poor conversion?

It seems so...

Poor conversion contributes to hypothyroidism/ low T3

I have the Dio2 polymorphism/ homozygous which impairs conversion so I guess that has always been a factor

It has turned out that I have a form of thyroid hormone resistance which I have very likely had all my life.

I was only diagnosed as hypothyroid 22 years ago after I became very ill and requested testing.

Prescribed levo, rising to 175mcg, and felt increasingly unwell until I could barely function.

Only discovered the genetic factor/ poor conversion a few years ago.

jcarlton76 profile image
jcarlton76 in reply to DippyDame

Hello i recently got some labs back and was re-reading responses because i have appt coming up. I am very confused and hoping you might have some insight...my tsh went down to 2.86 my free t3 is 4.0 and range is 2.3 -4.2 and my free t4 is 1.6 range 0.8-1.8 im on 200 mcg of levo and 5 mcg cytomel. I feel like my free t3 is too high considering it took so long to get my tsh down to 2.86 and also considering my mew "diagnosis" of fibro. Do you think that is the case? I have read so much about hypothyroidism and Fibromilaga but it is very confusing to me. Thank you.

DippyDame profile image
DippyDame in reply to jcarlton76

What exactly are your symptoms?

I'm assuming pain and fatigue ...but anything else.

Have you optimised vit D, vit B12, folate and ferritin to support thyroid function?

If the dose is too high we can experience a converse effect....that is, overmedication can cause symptoms similar to under medication

200mcg levo plus 5mcg T3 is a fairly large doseBoth your Frees are at the top end of their ranges which for a lot of people might be too high....but we are all different.

Do you have any symptoms of overmedicating....fast resting heart rate, hands trembling when arms are outstretched, over heating.

Why are you taking T3... although it is a small amount?

The levo you are taking appears to be converting adequately to T3 on it's own!

However it is possible that you need less levo and more T3....the T3 you are taking may not be reaching the nuclei of the cells which is where it does it's work. This can cause cellular rather than glandular hypothyroidism...but don't expect medics to be overjoyed at that suggestion!! I referred to this in my response above.

I'm afraid finding your therapeutic dose can involve trial and error...and a lot of reading and record keeping

Following original diagnosis of hypothyroidism ( which was the original purpose of the TSH test) I find focusing on TSH to be of limited use... but medics think otherwise and overlook the Frees making dosing difficult for many patients.

High TSH = low hormones

Low TSH = high hormones

But FT3 is the most important reading.

I guess this sounds equally confusing but you possibly have 2 choices...

Stop T3 and try levo only

Or...

Reduce levo by (say) 25mcg and increase T3 to 10mcg

Don't expect instant results, titrating to find your therapeutic dose can take a very long time....been there!

Listen to your body it will tell you when something is out of kilter!

jcarlton76 profile image
jcarlton76 in reply to DippyDame

Thank you so much. I asked them to try me on cytomel because on levo alone i never got under 3.0 and i kept having bouts of extreme fatigue and joint and muscle aches. It has gotten so bad my muscles and joints ache and my arms feel so weak and i have swollen joints and nerve pain. It has been going on so long i just wish there was a clear answer. Im asking her to order the ferritin folate vitamin d and b tests this week. I cant remember if or when we have done those. I dont supplement right now but i will, depending on test results. Im 45 with 2 youngish kids. I just want my life back. Thank you for your help.

I also have fibromyalgia. My Free T3 levels showed that I was converting, but it seems to be an absorption issue for me. Adding lots of T3 has helped a bit. I may need to reduce T4 even more and increase T3. What also helped, perhaps even more, was reducing carbohydrates in my diet. I suspect food intolerances have a lot to do with fibro symptoms. I've seen this in myself but I want to look into it more. There are lots of types of food intolerance tests out there but I don't know which, if any, of them are reliable. Trial and error through an elimination diet is the cheapest option. I also take lots of supplements, but I don't know which ones have helped fibro specifically.

Alejandrita17 profile image
Alejandrita17 in reply to Canu

Zinc and Selenium are critical.

I’ve seen a few posts which have reminded me that when I was very sick with Lyme disease “diagnoses” of chronic fatigue syndrome (CFS) and fibromyalgia were bandied about but one practitioner who eventually got me well after feeling dreadful for about 9 months told me most cases of CFS & fibromyalgia are actually as a result of undiagnosed Lyme disease. What I have learned since is - had my thyroid function in particular T3 levels been optimal I probably wouldn’t have got so ill with Lyme and I wouldn’t have had the pains and fatigue, depression and insomnia that come with Lyme. I learned a lot from this group & from a couple of naturopaths and in my view the key is to get T3 levels optimal, clean up the diet (eg limit processed food & avoid foods that cause inflammation eg gluten and dairy) and take the right supplements- for me it’s been B complex, vit D, magnesium, zinc and vitamin C. Controversially (!) I also take iodine and selenium.

I hope you can get your health back too.

X

Why controversially?

I think there are 3 camps as far as iodine is concerned (maybe more!)1) don’t go anywhere near it as it’s bad for thyroid health

2) take daily with selenium to displace other halides that are bad for health eg fluorides and bromides that we are regularly exposed to.

3) know nothing about iodine other than it’s what grandparents used to put on cuts etc

Are you taking the prescribed T3 ? Sounds as if it could be increased.

I read in one of your threads that your VitD is low - how low ? Maybe time to supplement. Did you know that VitD is anti-inflammatory and a steroidal pro-hormone - so much more than a vitamin.

I was diagnosed with Fibro in 2000 and Hashimotos in 2005. My VitD was low along with B12. I am now T3 only - inject B12 weekly and take 8000 iu's VitD daily - plus other supplements !

I still have tender spots in my body - especially around major joints. I believe the painful bits are caused by inflammation so I try my best with gut health/diet.

MorecambeBay profile image
MorecambeBay in reply to Marz

Did the diagnostic work of fibromyalgia involve poking you in 11 places and assessing your reaction? Ridiculous

I see a very clever Pain Consultant Anaesthetologist. She recently told me never to go near anyone who claimed to treat fibromyalgia as it’s the box they put you in when they can’t find out why you’re in pain.

Marz profile image
Marz in reply to MorecambeBay

Some crazy bloodtests had the GP jumping up and down - in the days when they could ! Resulted in a phone call at work asking me to come to the surgery ASAP. PMR was diagnosed and he wanted me to leave with a script. I didn't ! Did some research and booked a private consultation with a Rheumatologist.

Before the appointment I went to India and had 3 weeks Aurvedic Treatment. Daily yoga - walks in Lodhi Park morning and evening - with minders ! - daily massages.

All pre thyroid diagnosis. When I saw the Rheumatologist he downgraded PMR to Fibro. This was all in 2000.

Yes I am aware of the boxes they like to pop you in - and leave you there. I'm unable to fit into most boxes !! My research never stops !

MorecambeBay profile image
MorecambeBay in reply to Marz

Is it a cold or is it flu?

Asprin

The Aspirin of yesterday..........the Statin today?

😉😉

I was diagnosed with fibromyalgia twelve years ago. I got so bad I could not move my legs to get up a curb. I was in constant pain. I saw a couple of different "specialists". Each prescribed, what for me was more and more debillitating drugs. After suffering for three or four years and getting worse and worse, I read an article on line. It said 80% of people diagnosed in this country with fibromyalgia don't infact have it. It said most people are actually suffering with a vitamin D deficiency. I rushed to my gp and asked him if I could be one of the 80%. He told me definitely not because I must have been tested for it prior to my diagnoses. I said I could not remember ever having a test. He said the simplest way, rather than ploughing through my records was to do a test now. I did and I was extremely deficient in vitamin D. I started taking vitamin D and improved almost straight away. All the signs were there. I remember telling the second consultant that I could not understand why I was alway so much better in the summer and especially when on holidays in the sun. He told me it was because I was more relaxed!! I'd read a lot about the growing problems with vitamin D but never read anything about the actual symptoms. Have you had your vitamin D checked? I hope you get better soon.

shaws profile image
shawsAdministrator

This is a link and it is by a Researcher/doctor and expert on Fibromyalgia. Dr Lowe was also an Adviser to Thyroiduk before his accidental death.

healthunlocked.com/thyroidu...

Hi jcarlton76 firstly I'm sorry to hear that you may have been diagnosed with fibromyalgia syndrome, I 2 have recently been diagnosed with fibro it's a horrendous condition to live with and doctors are only just learning about fibromyalgia syndrome as it's relatively new, it took 3 painful years to get my diagnosis and I'm currently taking pregabalin which does nothing for my pain, also amitriptyline at night this helps take the heavyweight off my legs hadn't slept in months and finally got some Trazadone which are a sleeper an antidepressant which I take at night, never heard off the medication you are on, do they help? How long have you been taking them? An do you take any other medication?, ya not alone I'm also feeling pretty desperate but only time will tell as fibromyalgia has now been recognised by health professionals etc, I left work in Jan because I could not cope ( I was a support worker for people with mental health) had been there nearly 4 years I've not left the house much since an I 2 am concerned how much this has changed everything in my life and my partner's I was referred to a pain management consultant eventually after being sent for scans, colonoscopy all sorts of medicine including morphine, my referral took months but now the consultant has devised a pain management plan

( which i am sceptical about) he is experienced in the area of fibromyalgia, but still, yet they have a lot to learn, and so do I, can I ask where you get your pain mostly if you don't mind me asking? also your mental health is a key role in fibromyalgia have you been referred to see a fibromyalgia specialist a been offered any sort Of counselling or been given any info on support groups etc?? As that's all there is at the moment but it's good to talk about it, I often get upset and isolate myself because I'm in so much pain apart from when I sleep but as soon as I wake up and my feet touch the floor I feel pain, I never got out of bed either for months an did not eat just never felt hungry still not much better now but slowly trying to implement the lifestyle changes an get the balance of my medication right. I get there I guess in the end but I'm not the same person I was a year ago, but I'm working on that 2, I'm not very good at talking about it but when I saw your post I felt I had to answer even tho my hands and fingers are sore 😂😥 got to laugh sometimes it's the only way to get through the day,and the cold also is a killer for all bone and nerve-related conditions, I hope this helps i have some resources that you might find useful if you would like them feel free to ask.

kind regards we do🥰

Marz profile image
Marz in reply to Doobie44

Hi and Welcome to Thyroid UK ! I read you are normally posting on Fibro Fora - so it is good to see you here as there are thousands of people who have found relief from their Fibro symptoms by optimally treating the Thyroid - myself included.

Have you had your Thyroid CORRECTLY tested ? So often the NHS misses a thyroid issue by incorrectly testing. Have you had B12 - Folate - Ferritin - VitD tested ? These are all so important and yet they have to be requested tests as they are NOT routinely tested - SUGH !

Of course a thyroid issue may not be relevant to you but it is good to rule this out before being left in the Fibro Box. If you type Fibro into the Search Box here you will see 100's if not 1000;s of relevant posts. Happy to help...

I have had fibromyalgia for about 20 years , it does effect your mood so I understand why you taking one antidepressant but not two. I don't take any on a daily basis but diazepam when my muscles go into spasm , I take pain killers and a muscle relaxant tramadol and baclofen. I have learn to live with and not fight it , this helps my mood and the amount of meds I actually take. Usually I manage most of the day taking nothing come around 5 o'clock I need the meds and a comfy place to rest. I found acupuncture helps also a good massage,I have purchased a number back and neck home massage machines I love them. Not sure how to word this but I found by not fighting it and going with it and I don't mean wallowing in it helped me the most . When I was younger and had bad pmt I told my husband it was his problem not mine. I treat my fibromyalgia with the same attitude

jcarlton76 profile image
jcarlton76 in reply to fizzybee

I am going to an acupuncturists next week. Fingers crossed it helps. I hope to get to your level of acceptance soon. I will take your advice and try to roll with it......i will try

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