I was diagnosed with fibromyalgia by Rheumatologist last week. She said all my thyroid levels were normal ( they are all within range) but could not explain why I have a goitre that seems to increase and decrease in size by the day.
I've just found online an article written by an Ametican dr about a link between thyroid and fibromyalgia, where the thyroid levels appear to be normal, but there's thyroid resistance (?) This is where I got a bit lost......
Has anyone heard of this or know anything about it? I'm struggling to understand how a normal thyroid seems to have developed a life of its own! I'm gluten and caffeine free which has helped a lot.
I too was diagnosed with Fibro back in 2000 by a Rheumatologist then with Hashimotos in 2005. I personally think it is linked to Low T3 which is rarely tested in the NHS. You need to request copies of those so called normal thyroid test results - they are legally yours. Post them here with the ranges in a new post for people to comment.
If you are on a phone scroll down and down to the heading RELATED POSTS where you can see 10 posts previously posted and discussed on the topic of Fibromyalgia.
Have you had B12 - Folate - Ferritin - VitD tested ? Are you takng any medications ? Gut issues ?
Thyroid hormone resistance can be linked to adrenal issues when cortisol blocks the T3 from entering the cells.
I was diagnosed in 2008 with fibromyalgia .... (2006 treated for hyperthyroidism) then in 2016 diagnosed with hypothyroidism! It would take some effort to convince me there isn't a link
I agree with you klr31 . T4 is what is needed . Most Endo/Dr's treat patients with labs only . If TSH is good then patient must feel well too . WRONG . Dosing patients with SYMPTOMES is #1,2,3 . and so on . When will Dr realize that labs are not be all . It's more ART than SCIENCE . Listening to patients is where the right dosages come not some labs .
I went to see a rheumatologist years ago with an esr of 100.( erythrocite sedimation rate) it showed I had massive amounts of inflammation. He did not even do any tests just said I did not have rheumatism who I already knew.
A few years later I literally could not go on working full time with massive pain foggy brain, feeling like I had flu and stiffness so I chose a consultant in a different part on the country. She had been an endo for 20 years and is by far the most knowledgeable person I know.
I was swapped to a gluten free diet and she tested me for everything going at that time.
Nil free t3
Low free t4
All the vitamins were really low- she did a red cell magnesium test too which was dangerously low.
Within a week I had a four page does and don't fot my new gp.
I have daily magnesium injections together with b12 and I started on the t3 and t4. Normal/ within range does not cut it. You must go on how you feel especially if you have gut disfunction issues( yes i had those and v high corstisol with low dhea) if you don't absorb well then you need more meds until you can help your gut improve. Or permanently I'm some cases.
It's a pity we can't test where we are when we are well because that's optimum for us. I was lucky I had to have random blood tests as an athlete- on no meds my t4 was 32 and t3 5.8 - those were normal then. Over the years the ranges have been reduced massively.
I will private message you my consultant - if you read anything read her web pages/ books.
A goitre can be an overactive thyroid or hashimotos amongst other things. I'll guess it's not the first.
Please consider a full thyroid and vit test through blue horizon- it's a fab way to start and you get your results in a few days. If you post them people will help you.
Just remember if you can change 20 things and they improve your health by 1% it's a massive difference.
Please could you private message me your consultant’s name too. Thank you.
Thank you all so much for your replies. I can accept I have fibromyalgia ( just glad it's not Lupus as that could possibly have implications for another family member) but I just have a gut instinct that there's something else going on and my gut tells me it's thyroid related. But of course no dr will listen to me as there's no proof !
B12 L198. deficient <140. Insufficient 140-250. Self treated with B12 injections. Many symptoms disappeared, but not permanently self inject very 2-3 weeks as I feel it's needed.
Serum Folate 21.87. (10.4-42.4). Nmol/L. I take 1x400 ug Folic acid daily.
I don't know if these throw any light on it. I cannot lose weight, even on a almost no carb, low fat and sugar diet I tried for 6 weeks. Lost almost 4 lbs first 10 days then not an ounce after that.
I would pop the results into a new Post so more people will see them and comment. The people who offered suggestions on this thread will not see them unless they return to the thread
Hi, if it's your thyroid it will show eventually. I was told for years that it was normal but had every symptom you describe. I was diagnosed last year when I had an annual thyroid check (I've had one every year since 2007). Was totally expecting it to be 'normal' again.
These results reveal a low TSH and a low FreeT4 (&T4). Have you Googled searched 'low TSH and low Freet4 ' ?
Ask GP or/and Rheumatologist for investigations re: Pituitary Gland.
Usually if T4 is low the Pituitary Gland over works by producing more TSH (Thyroid Stimulating Hormone ) to compensate. But your TSH is low, despite your FreeT4 and T4 being bottom of the 'normal range'. So I would query this. Now 2 years on, ask for all these tests to be repeated and make should you are tested early morning and fast, drinking water only before test.
You should also ask your GP to order an Ultrasound scan of your Thyroid. Hashimoto's Autoimmune Thyroiditis has not been confirmed by the Thyroid Antibodies tests (TPO and Tg both very low in normal range - so fine). So you need an Ultrasound scan of your Thyroid - especially if you have goitre.
2)
Your B12 result (2 years ago) revealed insufficiency - so why are you self medicating? Did you show these results to GP or Rheumatologist?
You should have been treated and retested by GP.
Were you tested for Pernicious Anemia?
Have you considered writing a post on Pernicious Anemia Society forum ?
You could post these results in a fresh post but do give:
(i) the date of tests
(ii) list of current symptoms
(iii) list of any supplements and medications being taken with doses.
You really need up to date Thyroid Function blood tests. And B12.
So far there is no evidence of Hashimoto's Autoimmune Thyroiditis but there is some indication of possible Hypothyroidism due to a Pituitary Gland problem. However because your FreeT4 and T4 were within the normal range you would probably be told Thyroid function 'normal'.
But look at how low in range.
Go onto the ' Thyroid UK website 'and search 'Symptoms of Underactive Thyroid ' on there. See how many you have.
Also ask at some point about testing to eliminate a possible Adrenal problem. Because, if any, that would need to be treated first before any Thyroid treatment started.
Ask about : cortisol, thyroid, prolactin and testosterone blood tests (perhaps these were done and you weren't told?)
Ask GP for the Ultrasound scan and a referal to an Endocrinologist.
If possible, take a friend or family member with you to see GP for moral support.
And go prepared with your lists of symptoms and requests.
Be firm but polite. Keep going back to GPs till fully tested.
ps
Google - the Pituitary Gland Foundation.
Contact helpline and tell the Nurse your TSH and FreeT4 and T4 results plus your symptoms. Ask for direction.
I was diagnosed with FM, & had "normal" thyroid hormones despite having a goitre.
Most FM symptoms reduced once I started self-medicating with thyroid hormones, as did the goitre. If I'm undermedicated, the aches & fatigue are intolerable.
Watch you tube videos/read books, however you like to learn best.
Dr Amy Myers (new book out on Autoimmune and Thyroid, has thyroid issues herself had to have thyroid removed I think when a medical student - rues the day wants to prevent anyone else suffering same fate. So very Thyroid/nutrition focused helps/cures 1,000's patients in her practice.
Dr Datis Kharrazian brilliant book 'Why is my Thyroid still not working' amazing man. (will be you tube videos - look for ones being interviewed by Sean Croxton who organised the Thyroid Summit a few yrs ago. 20+ expert practioners being interviewed obviously about thyroid health - you can probably still buy the download or dvd's. It was broadcast for free at the time. Dr Kharrazian wrote, latest book 'why is my brain not working' so looks at thyroid brain connection, fibromyalgia - diet, how to boost nuero transmitters. Can't recommend highly enough.
Have to look for root cause of fibromyalgia and possible thyroid connection but also the thyroid is not (if not) working well for a reason. For instance imagine a weghing balance scale. If cortisol is up then thyroid has to be down. Thyroid up, cortisol has to be down - you need them in balance. T3=3 parts iodine, T4 4 parts iodine - what blocks iodine from attaching to iodine receptors on the thyroid - other similar halogen elements that will attach Bromine found in fire retardents - so breathing in fromnew furniture/mattresses also commercial baked bread cakes etc (not sure if EU has banned in food though) Fluorine/so fluoride can be found in bottled water, toothpaste Chlorine - in water. Absorb more in a 5 min shower in the steam than drinking. Fit a shower filter. Filter your drinking water - one that uses a glass jug (amazon) Don' want your water standing in plastic - estrogens - basically that means no bottled water/drinks/moist food in plastic/ microwave plastic cookware
If you go swimming in pools, dont filter water at home and don't have a shower filter and eat/ drink/use the other stuff. Your thyroid health won't be optimum and will decline.
Fybromyalgia - where is the fundemental problem? - your brain. Gut - Brain connection. The gut is now considered the 2nd brain/ the 1st by many. Read/You tube videos. Neurologist Dr Perlmutter- 'Brain Maker'. The role of the microbiome health/balance in brain function. Beneficial gut bacteria message the brain constantly. No beneficial gut bugs = no brain function. Our gut bugs outnumber human cells 10:1 and their genes according to many 100:1 according to Dr Perlmutter more like 350:1 Certain species are responsible for messaging endothelial cells lining the gut wall to grow to repair damage caused. You don't have those strains then things are going to go wrong pretty quickly. They message the brain possibly through the vagus nerve. If you don't have a healthy well balanced microbiome with a myriad of beneficial species then your function will be compromised including your brain and thyroid. Sorry if you know this because you do not eat gluten.
Vitamin D needs to be well up over 100's, if any health issue, higher than that, I don't like mine to fall below 130. Mine once went up to 265+ because supplementing highly with curcumin and contain vit D so was probably taking 20,000 iu's for about 12months. when my rheumatologist got annual test results back, she didn't freak out, just said stop supplementing which i did until it fell to 120's - as with thyroid - receptors on every cell, shows importance to function. However please note should supplement with K2 and make sure from food getting enough of the other fat sol vitamins as all work synergystically together. But K2 supplement with if taking D. Get K2 mk 4 from food such as hard cheese, Brie a good source. But Mk 7 need to supplement, I use Pure Nature (amazon). K2 is not K1. it is a co factor for enzymatic function enabling calcium to be transported to where it should be used - bones and teeth. Without enough K2, clacium will drift into soft tissue like muscle, cause muscle pain, your heart is a muscle too, you dont want hardened tissue in your heart or arteries (hardening of the arteries to brain/ calcification of arteries to/from heart.
So need fat soluble vitamins - which means you need natural sources of fat/saturated/monounsaturated fat and omega 3's from wild seafood (farmed fed omega 6 grains etc so you are not going to get anything healthy eating farmed fish that are crowded and unhealthy and are given antibiotics) Do not consume polyunsaturated industrially made oils. Your brain is made up of a high percentage of fat - myelin sheaths in the brain are fatty membranes protecting your nerves. Compromised = fibromyalgia. fybromyalgia is jut a term that the med profession have made up because they don't understand function. So google brilliant chiriopractor Dr John Bergman - gives brilliant lectures on you tube - very witty style. If I want cheering up, I listen to him. Google Bergman you tube thyroid or fibromyalgia or whatever. Don't eat a low fat diet that we have been wrongly advised to do for the past 40yrs. Or wory about cholesterol, you need cholesterol to make your hormones, that would include thyroid hormone that you are concerned about and vit D. Vit D is also a hormone and naturally made with the sun's reaction with cholesterol in the skin.
Something that damages this vit D pathway is glyphosate (Round Up) insidious weed killer, sprayed on everything. Banned in EU on food but sprayed everywhere by councils and your neighbours. Big push, many supermarkets / garden centres have been pressured to stop selling, but not all have. Sit on the grass in the park - you will absorb through skin. Monsanto the maker has been held to account in a Tribunal in Paris for Crimes against Humanity. Pretty nasty stuff then, everyone is using. Other herbicides also tho and Insecticides etc. Have you noticed the rise in organic cotton baby/children's clothes. There's a market because cotton is the most heavily sprayed crop on earth - doesn't wash out and you don't wan't that stuff next to your baby's skin or bed clothes, mattress full of fire retardants to breathe in. What a world. And we wonder why we have thyroids not functioning as they should. Goes without saying: eat organic food.
Re K2 look at Kate Rheaume Bleue's book Vitamin K2 and the calcium paradox, a litle known vitamin that could save your life. You tube lectures and interviews of her. I have her book, well worth getting - re all sorts of info re implications of deficiency in all manner of health issues cancer etc
B12, massive impact in brain function, so don't accept GP saying normal - get print outs of test results 6 years ago my B12 was 191 - told normal. 191 was then actually bottom of the range. Dr Daniel Amen - Psychiatrist (now functional nutritional based) states vit B12 should be top of the class/top of the range. Japanese range is 500-1300. Tell you something about UK! I have been told that to heal brain damage - if you have symptoms (fybromyalgia amongst) then you will not start healing until B12 is up at least in 1,000's. See B12 deficiency website (a charity set up by retired GP Dr Chandy)
Posting excellent video lecture re vit d. Remember must have serum calcium tested at same time as vit D. If take high dose vit D ten need to know calcium levels not soaring.
Also ask for an ultrasound of your thyroid to see what's going on.
Also Isabella Wentz in her thyroid interviews this year (had Hashimotos herself as young recently married/ was destroying her life) She said there is no reason why thyroid antibodies should be above 1. That ! is perfectly adequate to provide cell death/apoptosis by the body. So best thing work toward reducing your antibodies re info I typed above and no doubt other strategies.
Have your homocysteine checked (ask GP for but need to have taken at local hosp that tests for in lab -so check with hosp before turning up. These days, GP add test request on the computer and you just turn up whenever/no appointment with your NHS no or hosp no. Mention to phlebotamist taking your blood that as testing for homocysteine needs to be in the lab within the hour. Homocysteine indicates whether methylation cycle working. Vit B12 converts homocysteine back into methionine. If homocysteine above 9 you are getting a build up, not effecient best 7 or below. Indicator for brain health warning sign for future alzheimers disease. Work to get it down if high. If low still need to get your B12 up tho.
Your D is far too low. Your B12 at 198? the min in range is 197. So you are bottom of the range and yet you are supplementing/injections. Mine was 191 when min of range was 191 and GP said normal. Dr Chandy (vit B12 def site) told me recently that if my B12 was 191 in 2011 as it was then I would have been deficient for at least 10 years prior to that. All that time damage to my brain would have been happening all that time because of the falling B12 and since to today. B12 deficiency is insidious, you do not feel symptoms until damage bad enough to create symptoms. That B12 needs to be min of 1000 to start the healing process.
LynneG ---- thanks for your comprehensive responses, much appreciated.
I'll print out this page and re read and then look for some of the books you recommend.
My B12 was 198 before I started s.i. I should imagine it's high now.
My GP refuses to do anything else, no more blood tests, but I can certainly look into more private tests.
Thanks everyone for your help. What would we do without the internet, these forums and people willing to share their knowledge ?
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