Does anyone else have a diagnoses of ME (CFS)? - Thyroid UK

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Does anyone else have a diagnoses of ME (CFS)?

Elmo218
Elmo218

Hi everyone,

Just wondering if anyone else has been given a diagnosis of ME?

I feel like it’s just my thyroid but also wonder if I’m in denial of another diagnoses!

Any help or advice much appreciated.

x

62 Replies
oldestnewest

Yes I was diagnosed many years ago. With lots of rest and avoiding over-exertion, I mainly recovered within a year but only fully regained health when I started thyroid hormones, and memory issues only resolved with later addition of T3. Follow your instinct. Good luck

Elmo218
Elmo218 in reply to Aurealis

Thank you for your reply. From my research and past results I think I may need T3 and am waiting to see an Endo who is known to prescribe but in the meantime I’m doing anything that may help me feel better. My main issue is brain fog, cognitive decline and fatigue, I get a few hours energy in the evening but not feel well with it. Do you have any tips?

Aurealis
Aurealis in reply to Elmo218

Have you tried taking magnesium at bedtime?

Avoid Teva brand thyroxine (unless you’re sure it suits you)

Avoid alcohol

Follow your instinct, you know yourself best

Elmo218
Elmo218 in reply to Aurealis

Thank you for the tips.

I haven’t tried magnesium but I will.

I have been on Teva since diagnosis in May, I’ve never tried any other brand because they contain lactose but if one didn’t, I’d be willing to switch and see. I don’t know if anyone knows of one?

I only have an occasional wine but I find when I do, my heart rate goes up and I feel a little better?

I just want to be back at work :(

Priscilla17
Priscilla17 in reply to Aurealis

Aurealis, can you explain a little further why you said to avoid Teva brand?

Thank you:)

Aurealis
Aurealis in reply to Priscilla17

Just that it seems to not suit a lot of people, though some are fine on it

cazmania7
cazmania7 in reply to Elmo218

Make sure they test your T3! Post your results here if you can

Elmo218
Elmo218 in reply to cazmania7

Thank you, I posted my results in a different post the last time they were checked but can’t quite find it atm...

Yes I have chronic fatigue and/or multiple autoimmune syndrome which is what my many docs are currently calling it.

Elmo218
Elmo218 in reply to bantam12

Any tips or ticks?

bantam12
bantam12 in reply to Elmo218

Sadly no tips or tricks, just have to go with the flow, take each day as it comes 😞

Hidden
Hidden

I am awaiting diagnosis, i have been referred to CFS/ME Clinic and have an appointment in December to be seen. My recent thyroid bloods show im marginally hypo, despite them reducing my T4 in September. Im so fatigued, brain fog, cognitively distorted and have widespread pain, which discouraged my GP to reduce my meds further. Hence my referrel to CFS/ME clinic. I have been on the sick from work for 7 months and I have decided to leave my current profession and when I do go back to work, get a desk job with less hours which will be better for me and my health.

Regards

Elmo218
Elmo218 in reply to Hidden

I sympathise completely. I’ve also been off work and I’ve found it really frustrating. I absolutely love my job, I can’t imagine myself not returning but at the same time can’t manage it at the moment.

Hidden
Hidden in reply to Elmo218

Hi there sorry to hear about your current difficulties i totally empathise as i am in similar position. If you need anyone to talk too, just pm me.

Regards

Hi I was once described as having Chronic fatigue by a private doctor but I could only afford to see him once so that was that.

I would like to see an endo but doctors always say I have an underactive thyroid, take the thyroxine and no referral to an endo. So I self medicate with t3 to feel half human again..

Elmo218
Elmo218 in reply to ffranny

Thanks for your reply, I’m not sure I can post on the comment or if we may need to direct message but just wondering where you find T3?

Many (thyroid) patients are told they have CFS, ME or a Neuurological or Psychological issue - and their doctor will ignore/untreat all hypothyroid symptoms for years/decades.

Elmo218
Elmo218 in reply to Londinium

I thought that may be the case. It was a neurologist which has given the diagnosis but my GP is trying upped meds, b12 jabs and an endo that prescribes t3 so fingers crossed 🤞

Redlester
Redlester in reply to Londinium

Yep - that's me - 18 years and counting - people serve less time in prison

Londinium
Londinium in reply to Redlester

So true. Hope some luck comes your way.... and ours. 🖖🏻

It doesn’t have to be one or the other (ie. thyroid or CFS).

As far as I’m aware CFS is a diagnosis of exclusion ie. testing for all the things which would be known to cause fatigue and still not having a definitive answer. Therefore, less than optimal thyroid function could be the cause of some (probably many) people’s chronic fatigue.

Unfortunately once doctors have ruled out a thyroid problem with “normal” test results (and not even a full thyroid panel at that) then it’s assumed that it’s not that.

SlowDragon
SlowDragonAdministrator

Have you now had coeliac blood test from GP or bought one online?

Are you now on absolutely strictly gluten free diet?

Your TSH is still too high indicating you need dose increase in Levothyroxine

Are you now taking separate vitamin supplements

Ferritin was very low, now prescribed ferrous fumerate, you should have levels retested regularly

Elmo218
Elmo218 in reply to SlowDragon

Hi Slow Dragon,

I didn’t have coeliac test as I had already gone strictly gluten free and I felt it wasn’t worth the severe bloating and pain I get if I were to reintroduce gluten.

GP wanted me to see neurologist before increase as he and two other GPs both agreed TSH was fine... When neurologist suggested ME GP agreed to up thyroxine, so I had a 25mg increase starting yesterday.

Since we last spoke I have changed how I take supplements. I take my thyroxine at 6:30am

I have breakfast around 9 and take omega 3, selenium, vit d and a b12 oral spray (I’m starting b12 injections next week). I then take three iron tablets, one at lunch, one at dinner and one before bed, each with a vitamin C.

I think my retest is in December sometime so I’ve no clue if the iron is helping or not at this point although my lower lids are much pinker so fingers crossed!

SlowDragon
SlowDragonAdministrator in reply to Elmo218

Ok so you clearly are gluten intolerant

Make sure to be absolutely strictly gluten free, don't share butter. Jam, cutting boards etc etc.

Come back with new results after next test

You might consider DIO2 gene test soon

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

Yes, I was diagnosed with CFS via symptoms and bloods taken about 6 months after starting Hashi's treatment in 2014. Gp suggested taking Dhea keto-7 to help with the exhaustion, as adrenal fatigue was also diagnosed at the same time. I never noticed an improvement while taking it, though.

Elmo218
Elmo218 in reply to overunbykids

Thank you for your reply, I’ll look into that!

This is what happened to me, obvious hypothyroid bloods and symptoms but told categorically I had ME. Like many others I needed not just T4, once my collapsed state was recognised as hypo, but now much better on T3. B12 injections, vit D and being diagnosed MCAS and POTS has helped unravel the issues.

ME should be a diagnosis of exclusion but when we are diagnosed with thyroid problems, and use T4, many will tell us we must be fine and symptoms are not due to thyroid problems. Issues of medical misogyny and failure to listen to patients.

Elmo218
Elmo218 in reply to cwill

Thank you for your reply, I’m being tested for POTS so that might shed some light! Can I ask if you self medicate T3?

cwill
cwill in reply to Elmo218

I use dessicated thyroid hormones (NDT) as no endo here believed me.

I hope you have sufficient info on POTS, especially testing which can be very variable, so see POTS UK (and if necessary ask to be referred only to experienced consultants on their list), RCGP EDS Toolkit that covers EDS HSD MCAS and POTS, and EDS Socieity UK. I did my own POTS testing with a good BP machine and used a heart rate monitor to show GP a 2 week data collection.

I hope you get someone good.

Elmo218
Elmo218 in reply to cwill

I don’t actually know anything really. I only found out yesterday I was being tested. I often feel light headed and faint particularly after standing and my Apple Watch says my bpm is sometimes as low as 36 averaging between 46-51 most days.

cwill
cwill in reply to Elmo218

It sounds as if you also need to check the definitions of orthostactic intolerances, changes to BP on standing.

I took 2 years to be properly assessed and treated and finally feel as I am at my ill ‘best’. Do as much reading as you can as EDS MCAS POTS and OIs are as badly thought of as thyroid problems. A properly performed tilt table test, echo, exercise test and 24 hr holter should show where the problem lies.

Hi Elmo.

I too was diagnosed with ME and for 10 years I was very poorly and mostly housebound!

I then met Dr Skinner and Dr Peatfield and started on T3. It changed my life for the better!

Happy to go into more detail if I can help.

Thank you for your reply, did they prescribe the T3? I’m thinking of self medicating as I know endo wait is a long time and I’m self employed and unable to work and don’t know how long I can manage this way.

Hi there. Yes initially they prescribed T3 then I found a great Endo (who then retired early!)

Since that time I have struggled with the Endo replacement but I have stayed firm in that I believe that I cannot convert T4 (and they had previously put that in writing) and so reluctantly continue to support. They write to my GP who then prescribes.

So far, I have been lucky that the current Endo hasn't stopped my T3. If they ever did I would almost certainly self medicate.

I do agree that you need to get all vitamins etc checked before starting.

Lots of people go gluten free but I tried that and it made no difference.

Good Luck with it all, let me know if you need anything further.

P

Hi Elmo. I had RAI in 2014. Months later I became really poorly. First they said it was iron. Then they said it was depression. Then they said it is CFS. I remain convinced this is linked to the RAI and thyroid and have started self medicating with T3. I am of the opinion we should rule everything out before going with that diagnosis and given that they never even considered referring me to endo etc I still think thyroid needs exploration. Good luck on your journey.

Hello there. I was diagnosed with CFS about 9 years ago now, but never really any advice on what to do. They sent me to a counsellor which was pretty pointless as we were just going over and over the same ground and nothing worked. I tried to take on her advice but I am not a person who can sit around not doing much. I tried to take some of the things on board, like breaking tasks and jobs up, and having small breaks but a lot of the time I am too busy to break. I think it is worth you having your thyroid checked (or if you have done so, maybe medication dose changes). Best of luck x

SlowDragon
SlowDragonAdministrator

Looking at this previous post are you now on liquid Levothyroxine?

Or still taking Teva?

healthunlocked.com/thyroidu...

Elmo218
Elmo218 in reply to SlowDragon

I’m still taking Teva as upon further reading it looked as though my symptoms where synonymous with being hypo rather than side effects others had listed. Rightly or wrongly I’ve decided that if I don’t improve after my levels are optimal I will the look at making a switch. I’m also conscious of changing and introducing to many different things and not knowing what’s helping and what isn’t. I’ve just read the article in your previous reply and am wondering if you know where you can get the test and also why there is a requirement for counselling pre and post test?

SlowDragon
SlowDragonAdministrator in reply to Elmo218

There's a link on that page for the test

You write that Thyroid UK is your practitioner

All DNA testing requires counselling- its only after the test. Not pre test

Usually a well informed functional medic, who can help explain the significance

Testing positive for DIO2 gene has helped many people get T3 on NHS.

But it does depend on finding NHS endocrinologist who is prepared to prescribe T3. Email Dionne at Thyroid Uk for list of recommended thyroid specialist endocrinologists who will prescribe T3.

Elmo218
Elmo218 in reply to SlowDragon

Thanks for the information. I’ve got the list and have been referred to one but am awaiting Apointment. I’ll Do some more research on gene testing as I simply don’t know enough. Thank you

A consultant Endo said I had ME because of awful muscle pains and fatigue.

I added T3 with advice from this forum and the ME went !

Hope it works for you. Good luck.

cazmania7
cazmania7 in reply to Gcart

Inspiring stuff! Hope T3 works for me too 😀

Hi Elmo

I had classic symptoms, tiredness, hairloss, weight gain, feeling low, feeling fluey, no stamina, feeling really ill after exercise. My lovely family GP who knew me well monitored my thyroid, he said I was subclinical (TSH around 5-6), after 6 months he decided on a trial of levothyroxine which had an almost immediate effect, all though not symptom free. He then diagnosed me with primary hypothyroidism and I was medicated for another 6 months.

Unfortunately I moved house and surgery and had a new doctor who refused to accept I had a 'thyroid' problem and refused to prescribe the levo. He preferred to view me as neurotic. I became very, very ill, almost bed bound. After much pushing on my part ( for 3 years) he diagnosed me with ME and sent me to an ME clinic. It was there that I told them I used to be on levo. And the ME clinic saw no problem in finally referring me to an endocrinologist who confirmed that I had hypothyroidism, and that was what was causing the symptoms. And that it was an autoimmune disease to boot. He put me back on levo and has spent a few years adjusting it. However, my surgery still views me as a patient with ME, so every complaint or symptom I have is blamed on the ME and not my thyroid, so care has been very bad. It has taken me another 6 years to get referred back to the endo, who wrote a very, very strong letter saying I do not have ME but hypothyroidism. I am now at the point where I am on 125/150mcg of levo and have been under the care of the endo for the last year.

Now I am so much better than when I was untreated, but I still have aches and pains and tiredness, so I am not optimal, but I can exercise again and work. My bloods, however show a low TSH (under 1) an over range FT4 (which has ranged from 28 to 36, max is 22) and a low/under range FT3 (3.3-3.6, low is 3.6). I have been quite careful in following my endo's advice for the last year and am hoping in January when I see him again, to ask him for a trial of T3 to see if that removes the last of the niggles. If he won't, I will then have to see his colleague privately, and if that doesn't work, I am on my own self sourcing! Thats my plan anyway!

My experience of ME was a very unhappy place. The patients at the clinic all seemed troubled or depressed, (not surprising if they had been what I went through). I felt I shouldn't be there. I spent years wasting my time researching an unknown disorder with no cure. I felt that even the clinic (for all their intention to help) believed it was all depression related. I went through PACE etc, that made me really ill. And the worst thing was, at one point they convinced me that I did not have a thyroid problem but I did indeed have an incurable condition. Deep down I am really angry with the way my GP dismissed what I was telling him originally, and for the subsequent way the surgery continued to dismiss all symptoms as ME. The terms 'I suspect she has unrealistic expectations', 'probably premenopausal', (I was 37 at the time) and 'panic attacks' were used to describe what I was saying to them. There is no way in the world my lovely original GP who knew me for years would have ever thought any of that of me.... GRRR!

Things that I tried whilst untreated for hypothyroidism and 'living with ME' was antiviral tablets (no effect), so many supplements including CQ10 (no effect), amitriptyline (dreadful side effects but no benefit), B12 injections - once a week for 12 weeks (yes I did feel like I had oxygen going round my body after each injection but I was told that was a placebo effect when they want to stop the course!) The real difference was the levo and a gluten free diet. (although not optimal, definitely 100 times better).

x

Elmo218
Elmo218 in reply to Gilbo72

Hi Gilbo,

Thank you for such a thorough response and I’m sorry you had to go through all that. I said a while ago to my partner that I felt I needed T3 but was probably going to get a diagnosis of ME instead but was hoping to be proven wrong. Hopefully the next Endo I see will understand. I’ve certainly got lots of evidence now to suggest I’m not alone on this matter! Thank you, and thank you everyone else who has replied. I know I’m not alone!

JaneyJaney
JaneyJaney in reply to Elmo218

I was reading T3 can be used as a CFS treatment. Often apparently CFS patients often have low T3, but good T4 levels. I think the antibodies make you tired too. It’s very hard to get to the bottom of tiredness as can be lots of things. Get your thyroid antibodies checked. That might help give a thyroid diagnosis

Elmo218
Elmo218 in reply to JaneyJaney

I can’t remember the exact figure but antibodies where around 4/500 on the last check. I’ve got the thyroid diagnosis but being told that I’m adequately medicated with a TSH of just over 2.5 and must also have ME. GP has agreed to give more T4 and referral to endo who has been known to prescribe T3. I know 4/500 is out of upto 25 but don’t know how significantly high that is if you know what I mean?

JaneyJaney
JaneyJaney in reply to Elmo218

Antibodies themselves can make people feel,rough. Isabella Wentz some people like her protocol and trying gluten free is a must I’d say. Iron, B12, B vitamins in general can help too, as well as vitamin D. Case of try it and see. I definitely think a lot of people have food intolerances, worth cutting some things out and seeing if that helps. Low carb diets can also help some.

cazmania7
cazmania7 in reply to Gilbo72

Shocking story. Glad you are on the mend

Thor63
Thor63 in reply to Gilbo72

Hi I too very similar situation to you, 6 years of hell I would call it, given up work, since numerous consultants, diagnosed M. E. RECENT Pivate gp tested thyroid and said this is why I've felt so poorly. I'm a very active or was individual, was a P. E TEACHER, started feeling really unwell at start of menopause, now on levo, low dose due to hypersensitive reactions to hrt in past, but so far I'm OK, on 37mg, one and half tablets and increasing in 2 weeks. Just wanted to say your words have encouraged me, given me hope. I'm on gluten free also. I just wanted to ask you how long it's took for your symptoms to lessen, I know we are all different, it's only my 4th week on levo, 2xat 25mg, 2 at 37mg. Thank you

Gilbo72
Gilbo72 in reply to Thor63

Yes, thats like me, I was a complete gym bunny, very very fit. Sometimes I wonder if that with other factors had some impact on me developing an autoimmune thyroid disease later.

Well it took a long time to get to a place where I can say I am treated adequately, as I said, my GP and surgery refused to entertain the idea I had a thyroid problem and saw my problems more to do with ME. When I first trialled levo I was given 50mcg per day, (the standard trial dose) your does seems less than that, but I guess they are being careful and slow. After about 3 months it was upped to 100mcg and for 3 months I felt amazing, but they said I was over medicated and reduced me back to 50. Unfortunately, I ran out for about 6 months and felt awful and the new GP then refused to prescribe for several years, and when they finally did, I was yoing yoing on doses as one GP was sympathetic and upped it, and the other didn't want me on it and would reduce it. 4 weeks is still very early on. My endo now said that the levo should be upped slowly and steadily and I think that is key.

I think going GF had a big impact, although I didn't notice immediately. You will get there. The best thing I did was throw all the research I had on ME and stop researching. It seemed pointless and depressing to spend time on something that was seen as incurable. My efforts turned to the thyroid and best thing I've done.

So I am not 100%, but I have run a couple of 10k mud runs over the last few years and done a few park runs. And I did a year of a running club. So definitely much better. However, I do find I can't maintain the levels, plus I have developed osteoarthritis in my ankles, feet and hands which has hindered the running. (I suspect it may be related to low T3 as I am only in my 40s). Good luck! x

Thor63
Thor63 in reply to Gilbo72

Hi thank you for your reply, your comments interesting and giving me some hope of feeling better. The GP I see is increasing levo slowly, 2 weeks blood test and I should imagine increase again as you know we can feel so so poorly with the diagnosis of M. E and hypersensitive to medications. Funny you should comment on not researching M. E and looking for answers etc. I've stopped and convinced thyroid is the reason. I too felt depressed because there is no answers as yet and so poorly understood by family and friends when you don't look unwell. I'm glad you stopped too and so happy you feel better despite your arthritis. I too have it in different parts, neck, knees, hands, spine 😕I'm 56, so yes that can make you feel achy etc so take care to be active but not push too hard. Thanks again its given me a boost to see you feel better on levo, just to walk further I would be Overwhelmed to do and I will, I'm sure of that 👍 all the best. Take care x

How is one tested for CFS?

Elmo218
Elmo218 in reply to thyroidmom84

I was told process of illumination under the neurologist although I am certainly no expert.

Gilbo72
Gilbo72 in reply to thyroidmom84

yes, by elimination, I was told they couldn't find anything wrong with me (ignoring the thyroid) therefore it had to be ME. (I am out of the ME loop now so I don't follow research or anything as I think its irrelevant to me, but I think they may be trying to develop a test now...)

Dr Lowe (a famous thyroid expert) said that many of his patients had been diagnosed with CF / ME and or fibromyalgia, and then when they saw him he diagnosed thyroid problems. It’s very common for thyroid patients to be misdiagnosed. It happened to me for years and years. We found my thyroid bloods were wrong by chance. Make sure they have checked all your bloods and have ruled out thyroid from not just TSH but T4 FT4, T3, FT3, full blood count for vitamins and minerals (esp vit D), plus TPO antibodies.

If all they’ve done in TSH it isn’t enough. Get private bloods done if necessary to at least rule out thyroid issues.

I had chronic pain and fatigue for about 10 years before diagnosis and it was actually a good physio that noticed things weren’t right with my PV and other bloods.

Gilbo72
Gilbo72 in reply to HashiFedUp

Yes! The clinic said to me, 'well we can organise you to have levothyroxine, we find a lot of our patients respond well to it"...! I wonder why!

HashiFedUp
HashiFedUp in reply to Gilbo72

Oh my!!!! 🙈

I was diagnosed with FM which is similar to ME but with flu like aches & joint pain. A venn diagram of these two & hypothyroidism would have a huge overlap as the symptoms are very similar. Like ME, FM seems an invention of pharmaceutical industry to get us on large quantities of meds that mask rather than reduce the symptoms when adequate treatment for hypothyroidism would be cheaper & more effective in restoring quality of life.

My FM symptoms & a lot more that I've had for >40 years were greatly reduced after successfully (self) medicating with NDT then adding T3. I feel best on a combination of both. A huge crash two years ago led me down the path to self-injecting B12 despite having a high dietary intake. I feel ok with sublinguals, but injecting is so effective that I've reduced my overall TH intake by about 20%. This got me back on track & made me realise how essential the nutrient cofactors are that we see referenced in many replies as necessary for making our thyroid hormone intake work well for us. It only takes one deficiency to throw a spanner in our works!

In my opinion you sound under medicated. Do you have your blood test results? It's definitely worth taking control and checking them. I have M.E and Hashimoto's. I first became ill with M.E in March 1996 but I do wonder if my thyroid problems were beginning even then and whether they contributed to me becoming ill. My thyroid problems have weren't found until 2001 and then I was left on 50mcg for way too long (4 years) until I became very ill again. I didn't know as much about the thyroid back then. Anyway, I eventually upped my dose enough to stabilise my health and it has definitely made some difference but, unfortunately, wasn't the whole answer for me. You may have been misdiagnosed but you need to be on adequate medication and it sounds like you aren't. Doctors aren't trained particularly well in this area unfortunately.

Karen

Yes, like you I've been diagnosed with ME/CFS but also have autoimmune hypothyroidism. ME/CFS was diagnosed (by exclusion) about 16 years ago, a year or so before the hypothyroidism was detected. I never felt properly well or like myself on T4 only and recently started on a T4+T3 combination which has definitely helped me. Thanks largely to this forum I've learned a lot about the complexities of thyroid disease in the past year or so, and have to wonder if my ME/CFS symptoms were thyroid-related all along. There is a little research which suggests that for a sub group of ME/CFS patients, low T3 is a factor (there's a link in the thread from my very first post on here if you're interested). So much still to learn though. I really wish you the best with putting the pieces of the puzzle together - and hope it doesn't take you as long as it's taking me!

Thank you so much to everyone who has replied.

I know everyone’s different but just out of curiosity; I’m wondering out of how many given the diagnosis improved on T3?

Mamapea1
Mamapea1 in reply to Elmo218

Well I did for one! Had a diagnosis of ME/CFS and fibromyalgia, and gathered many other 'diseases' as the 25 years rumbled on😕 They were happy to increase Levo up to 300mcg, but it made me worse with every increase...I couldn't tolerate it at all in the end.

I now take a high dose of T3 only, (as I actually have RTH) which I'm forced to source myself. I don't seem to have any of the conditions I was assured by 'specialists' that I had, (I gained another one with every consultation) and I take no other meds at all, just a lot of supplements, as advised on here.

I feel fine, bar a few mild residual problems that were caused by my dire vitamin deficiencies when on Levo that were never adequately addressed by any medics, tinnitus, etc. Good luck with it all. x

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