Same symptoms: I have been told by my... - Fibromyalgia Acti...

Fibromyalgia Action UK
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Same symptoms

I have been told by my GP I have an under active thyroid and after 2 blood tests he says I should stay on LEVOTHYROXINE 25mcg even though I’m still unwell.

I then saw a Rheumatologist last week who says I have Fibromyalgia. So I asked him about having being diagnosed with an under active thyroid so have I got both and he said I don’t know, not my field ...

So my question is can you have both and do they cause the same symptoms ..

Thank you 😊

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Hi

Yes, I have both amongst other things!! My symptoms are very similar to each other. Pm me if you need to. Love and hugs Lynne xxxx

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Thanks Oldham 👍

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You are very welcome. Love and hugs Lynne xxxx

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25 mcg is a tiny dose and not even the recommended starting dose unless you are elderly or have heart problems, usually dose would be 50 mcg then increasing every 6-8 weeks until levels are good and symptoms have resolved.

Of course you will still have symptoms as your dose is to small to help. I would suggest you get a copy of your latest results and post them on ThyroidUK uk for advice.

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Hi

Yes, I started by on 50 and have gone up to 75. Take care Lynne

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Ok you said 25 mcg in your post

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Hit was ladybex who said 25 mcg . Take care Lynne

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Sorry replied in a hurry, oops

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That's ok, it's usually me😁

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Thanks Bantam, I said this to my GP and he said 25mcg and another blood test in 6 weeks. Is it because I’m 65 years old ?

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How long have you been on Levo ? If you are otherwise healthy then your GP is probably being to cautious or he doesn't know much about thyroid treatment which is more likely !!!

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I’m on my 2nd pack ... started 15th June this year ...

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You would usually have had an increase by now, keep copies of your results so you have an idea how it's going.

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Maybe the doctor is covering all basis and waiting for the 6 week test and results?

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I have put my results on here but don’t understand them ...

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Yes I have both and if you google Dr Lowe- thyroid, you’ll see that he believes that Fibro is just an under active thyroid that’s not properly treated. There is a huge wealth of information on the ThyroidUK website and forum on here, and also on TPAUK which is the Thyroid Patient Advocate UK website, that’s a very good site too!

When you get your thyroid tested, it is also important to test your FT4 and FT3 levels as well as Folate, B12 and Vit D. As these all go hand in hand to ensure the thyroid works optimally. Most GPS though won’t test for FT3 and therefore most of us resort to private blood testing with either medichecks or blue horizons.

There’s lots more info about this on the ThyroidUK forum and website, plus much more knowledgeable people than me!!

As others have said, 25mg is a very small dose and is a child’s dose or elderly dose. What are your results- do you know? With ranges if possible as that’s helpful

Feel free to pm me

Hope this helps ladybex

Shelley x

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MY LAST 2 LOTS OF BLOOD TEST RESULTS ....

TSH 11.4 free T4 8,8 TPO MORE THAN 1300

Previous raised TSH normal T4 serum TSH level above range

13.53 mU/L (0.35-5.5)

Above High reference limit serum free T4 level 10.0 pool/L (10.0-19.8)

Do not understand these results at all ??? 😫

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Your TPO results are showing antibodies, to get a proper understanding of your results, you really need your FT3 tested. And with those antibody readings I would push both for an endocrinologist referral and another thyroid panel testing making sure they test FT3 too, as well as Folate, Ferritin, B12 (active if possible) Vit D and CRP-hs. If they refuse any of these, please consider private testing and search for ThyroidUK in the search bar on the top of the page, and post those results in there. We are all very friendly and the knowledge that the members have is phenomenal, it really is! I would be completely lost without them and the help they’ve given me regarding my thyroid, in fact, I’d be getting sicker and sicker if they hadn’t alerted me not only to the issues that I was having with being under medicated just as you are but also to my B12 deficiency!! I really do owe them my life! xx

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I am seeing Endo in September ... how do I get private testing as I dont think my GP tests FT3 ?

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Head on over to ThyroidUK forum and they can explain in much better detail.

I use medichecks as they test for B12 active whereas Blue Horizons don’t. The one I used was the Advanced Thyroid panel, this is the link to it. (If it works!)

Edited by Admin Please PM member for link

It’s £99 but on a Thursday it goes down to £79 as it’s Thyroid Thursday and they regularly discount all the the Thyroid tests.

Blue Horizons I found expensive and they don’t discount that regularly.

The best thing to do when you get the test, is to take your Levo 24hrs before you test, and also to fast, have supper or meal the night before as usual and then nothing but water until the test the following morning.

It is also better to do the test before 9am and then send it off immediately by recorded delivery so that it gets there the next day. It then takes around two days for them to send you a report on your samples, which is easily accessible through their online portal.

Once you get your test results, post them up to the ThyroidUK forum and the more knowledgeable member will interpret them for you.

Hope that all makes sense and isn’t too much information??

PM me if there’s anything you’re not sure of, I really don’t mind.

Shelley x

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Ladybex I would also agree that you should post results on TUK and discuss Thyroid issues there too. All the best Emma :)

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You are very undermedicated which is understandable as you have only recently started treatment and you are on a tiny dose, your aim is to get tsh down to 1 or below. If you started Levo in June you are due an increase, your GP keeping you on 25mcg for another 6 weeks isn't going to help you.

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I asked him about this and said I’m not feeling any better.. he said wait for another blood test in 6 weeks time and see what Rheumatologist says.. well Rheumatologist said I have fibromyalgia and offered me antidepressant which I refused ☹️

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Can you see a different GP in the practice ? one that knows how to treat you properly. Once you are on an adequate dose your fibro symptoms will hopefully improve.

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Bantam my thoughts the same ... going to call surgery for appointment with different GP.. 🤞 I don’t have to wait too long ... thank you again 😊👍

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Good luck 🤞

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You need an increase in thyroxine; also get your Vitamin D checked as that can cause symptoms similar to Fibromylgia.

Karen

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Hello Lulucops

The late Dr Lowe’s research was never published in a peer reviewed journal nor has it been replicated to conclusively find out the connection if any. It is still merely Hypothesis and not proven as to whether there is a connection.

Here’s a post about Thyroid & Fibromyalgia that may be of interest;

healthunlocked.com/fibromya...

I feel personally (not FMAUK) that if there is it’s a bit like a chicken and egg scenario as to what condition came first causing imbalance within the body.

This hypothesis is mentioned regularly on our community and is a polarised debate whereby there is much divided opinion. However, Fibromyalgia research points to it being a condition that likely a CNS disorder until other research is done. Many with Fibromyalgia have Thyroid issues but there are also equally many who don’t. :)

I and I believe FMAUK support the need for better testing in the UK and it should be looked at before a diagnosis of Fibro is made. We often refer members over to TUK to discuss Thyroid issues and within the post above we link to Thyroid UK statement about Thyroid problems and conditions wit his similar symptoms. :)

Here’s part of it below;

Mentioned above are some conditions that may be seen, in some circles, as controversial: fibromyalgia and ME/CFS. Thyroid UK would like to state that whilst these particular problems can present as part of undiagnosed hypothyroidism, Thyroid UK does not subscribe to the opinion that everyone with these conditions has undiagnosed hypothyroidism.

Thyroid UK encourages people with fibromyalgia and ME/CFS to ensure that their clinician looks closely at vitamin and mineral deficiencies as well as thyroid hormone deficiency and dysfunction and adrenal dysfunction.

All the best

Emma :)

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I also said in my reply that he ‘believes it to be hypothyroidism untreated’ and signposted ladybex to the other websites where there is more information. I didn’t mean to imply that it was conclusive evidence. Apologies if it came across that way.

I’m also on the PA forum, I have a B12 deficiency too, and on there in reply to another post, I have said that there seems to be correlation between Vitamin deficiencies, cortisol imbalances (I also have Addisons Disease) and thyroid disease.

In fact I am deficient in Vit D, Folate, B12, and Iron. And Addisons is Adrenal Insufficiency. I also have Hashimotos which over here (UK) is more commonly known as Autoimmune Thyroid Disease.

Ladybex- A very good book by a highly renowned Endocrinologist Dr Barry Peatfield: Stop the Thyroid Madness II, explains it all so much better than I could ever possibly! (It’s cheaper as an ebook on amazon than it is to buy the actual book) it’s a really good read but very in-depth! I’m finding it easier to break it down into chunks.

Shelley x

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Don't mean to be picky but Dr Peatfield's books are 'The Great Thyroid Scandal and how to survive it' updated and revised as 'Your thyroid and how to keep it healthy'. I am not aware that he was mentioned as contributing to either Stop The Thyroid Madness book I or book II, but don't have them to check. (Might have to get them, thanks!).

I've also found Tom O'Bryan's 'The Autoimmune Fix' and Datis Kharrazian's 'Why do I still have thyroid symptoms when my lab tests are normal' very helpful. Looking 'upstream' for root causes of autoimmune conditions. Best wishes

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Actually I do apologise- I got the name wrong, I suffer with cognitive impairments and I just went off memory, I should’ve just checked because I am actually reading it on my kindle!! 🤦🏻‍♀️ I do apologise

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It is actually - “Your Thyroid and how to keep it Healthy” which I am currently reading. My bad! 🥺🙄

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Don't worry about it and no need to apologise! My memory is bad (and currently worse as I'm off my B12 and folate for testing - doing all kinds of daft things!)

Dr Peatfield's books are really good and I was lucky enough to see him a couple of years ago - gave me lots of pointers for further investigation. I've been using adrenal glandular support (Nutri Adrenal) since then (after saliva cortisol testing) and it has helped me a lot, in conjunction with other vitamins and minerals, diet changes etc. Best wishes

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I have both, my neurologist has said Fibromyalgia is a disorder of the central nervous system x

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B12 etc came back normal ...

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Define ‘normal’? Do you know what the values were, and the reference ranges used? You can have a ‘normal’ result but still be symptomatic because your body doesn’t absorb what it needs. (This is me! My levels are at the lower end of normal, but I still have neurological symptoms, so I have the shots) x

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That’s my problem I have no idea ... GP said they were fine 🤔

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Ask receptionist at the GPs for a copy of your blood test with results and ranges. Or if you have access to them online, they should be on there? I know my surgery doesn’t have access to bloods online yet

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I believe they are related and believe it is well documented. If you are feeling really unwell on such a low dose of LEVOTHYROXINE 25mcg I suggest you do as I did and got myself referred (your doctor cannot say NO) to a London specialist for a second opinion. My local hospital left me to wither on the vine. The specialist at Guys was in litteral shock by my condition, having lost all my body hair and most of my head hair, and unable to function a day. I was put on emergency treatment and six years later I am still visiting them 4 times a year and now on Liothyronine a more advanced treatment for underactive Thyroid, your life depends on your actions NOT your acceptance of your local GP opinion, take action now. I have never regretted it. In fairness if a specialist in the field tells you you don't have a serious condition then fair do, that is what they train for . Good luck and wish you well.

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Thanks Katie .. seeing a 2nd Endo in September 🤞 first Endo said my tests were normal and didn’t need to see me again ... I am going from Endo to Rheumatologist back to Endo in October ...

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Rheumi can’t do much for Fibro, only prescribe meds. For my Fibro I’m on Duloxetine (I have peripheral neuropathy and this helps with the nerve pain) Pregablin and naproxen although this is also prescribed for my osteoarthritis.

Some antidepressants are licensed for and used by many doctors for Fibro.

Most endos are diabetic specialists (more money!) and know nothing about thyroid monitoring or treatment, apart from the hour or so they do in med school! Unless they train as thyroid specialists of course but these are few and far between unfortunately, much like endos that specialise in Adrenal Insufficiency!!

If you email Dione at ThyroidUK, she can give you a list of private GPS and specialists in your area, I’ll find the email address for you now and post it on here.

Hope that helps

Shelley x

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I have both , been on thyroxine for years. Lupus only past 3 years. Both are auto immune disorders , and if you have one AI disorder you are prone to developing others. Fatigue is common to both . x

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Hi just been diagnosed with under active thyroid but more importantly he said my antibodies are attacking my thyroid!!! So I am on 50 thyroxine to start. I’m going to question how will I know if I’m feeling better when my Fibro symptoms are present cause similar. I’ve just found the fatigue crippling last few months so ok I might improve on abit ??? Plus will I lose weight ??

Thks x

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I hVe put on a stone and hoping meds will help me lose it... it’s not my food as always eat small healthy meals ... hope you feel better soon

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Hello. I have been diagnosed with PMR last year after three years of arm and shoulder pain however I’m am certain it is more like Fibromyalgia as time goes on. How did you get a diagnose from your rheumatologist? I have pain in most parts of my body no sense of well being and incredibly tired most days. I have thyroid fluctuations and am on low levothyroxine 50mg just upped from 25mg but I don’t feel very well at all very hot and agitated strange feeling inside maybe it’s too high. I’m getting a review on bloods soon. Hope you feel better soon.

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Thank you Hun.. rheumatologist told me it was fibromyalgia... GP says under active thyroid.. i am always feeling hot especially at night. Aches in muscles ... always tired and since June taking LEVOTHYROXINE 25mcg GP says to stay on low dose and take another blood test 6weeks. I’m

Like a pin cushion... this has been going on for nearly 2 years ☹️

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My rheummy told me it had all the signs of polymyalgia and although my inflammation were elevate once they are reasonably normal now . But it’s the muscle spasms, painful limbs, headaches and feeling ok one minute then feeling so unwell the next. I know there’s no specific test to prove but I know I don’t feel well and when I look around me I see people getting on with life yet I’m at a standstill struggling each day. Do you take something to help you? Going for thyroid test tomorrow that might show up something like being on too much Levothyroxine. My insides sometimes feel on fire yet my skin can feel cool horrible feeling. Thank you for your reply

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I have been offered various pain killers and antidepressant but haven’t taken them really. I walk my dog as much as possible and going to try yoga again ... let me know about your thyroid test and meanwhile sending hug 🤗

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Thank you. My problems are beyond that I have back problems so unable to walk so I get mega pain from that but I could cope with that it’s just this tiredness and flu like symptoms that gets to me. Tried antidepressants but they make me feel worse. I will let you know the results. Hugs back to you x

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Take care x

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