Do people on here have hypothyroidism or CFS?

[MEguy]

I recovered from ME/CFS a while ago although I did have one period where I had myclonic jerks at night along with fatigue which seemed to go away when I took B12 supplements even though my B12 was in the low normal range (350 or somehting like that it was and the low range was 190).

ANyway, I am wondering how do people know they have BOTH ME/CFS As well as hypothyroidism? (i have seen posts where people say they have both). My ME/CFS started after a viral infection. I recovered from the infection and then one or two months later, I came down with ME/CFS. I did try thyroxine once or twice and I saw DR skinner who prescribed it but it made no difference to my fatigue at the time if I remember. My thyroid has always been spot on in the upper ranges anyway.

[DoubleMalibu]

Good Morning

Can I ask how you recovered from M.E as I thought it was a lifelong condition that fluctuates and something that has to be learned to be managed.

Were you diagnosed very early on with it & so received some kind of help?

Kind regards

Lj

[MEguy in reply to DoubleMalibu]

Hi Lj, I don't know how I recovered. It took 16 years to recover. I still get tinnitus though. Some people do fully recover I heard but not many. Like you say for a lot of people it ;s a fluctuating condition. I was diagnosed with it in 1992 and recovered some 16 years later but about 2 years ago I had some strange symptoms I mentioned above(myclonic jerks, tremor and fatigue came back) and I took b12 for a few weeks and it went away.Been ok since touch wood. Stay well.

[Gigiruth]

Hi MEguySorry can't give an answer but thank you for an interesting question.

I have had 2 system crashes as it were, both after virus. One I lost the use of my left side and had to walk again.

Both happened 6 weeks after virus.

My team suggested my own immune system attacked me.

I have genetic issues.

Interesting question,thank you.

It's like putting a jigsaw together sometimes.

Take care

Gigi

[Sparklingsunshine]

I was diagnosed with Fibro around 18 years ago but as time has gone on I think its more likely that its actually Ehlers Danlos, a genetic connective tissue abnormality. I certainly fit the bill in terms of joint hypermobility, stretchy skin.

I was diagnosed with hypothyroid just over 3 years ago but my thyroid levels were always on the very high side of normal, so suspect its been an issue for much longer than that.

I also get two monthly B12 jabs due to Pernicious Anaemia.

[MEguy in reply to Sparklingsunshine]

Hi sparklingsunshine, so how do you know you have all three of these. Were y ou told or can you tell the difference?

[Sparklingsunshine in reply to MEguy]

No unfortunately they do rather meld together and it can be hard to know which problem is causing which symptom. I've been on B12 jabs now for years and I feel my B12 problem is well managed. My B12 issue and my underactive thyroid were diagnosed by blood tests.

My hypothyroid is a work in progress, trying to tweak my dose of Levothyroxine so I hit the sweet spot.

As for my EDS there's not much I can do as its something I was born with, but I try and exercise regularly to maintain my muscles and joints, eat a healthy diet and pace myself. My Rheumatologist told me I have EDS.

[toopainful in reply to Sparklingsunshine]

Hi Sparklingsunshine. I am a little confused that you were diagnosed with hypothyroidism when your levels were high? Usually that wld be hyperthyroidism. Do you take thyroxine?

I am hypo & both that & fibromyalgia & SVT & chronic kidney disease all happened after I caught a virus. I have also recently been diagnosed with Anaemia, do you find the B12 jabs effective? I wld be grateful for your advice.

[Sparklingsunshine in reply to toopainful]

No, sorry what I meant is that whilst on thyroid replacement I've been overmedicated, undermedicated and now I'm in the middle. I have struggled to get my FT3 levels up on Levo before so I tried NDT for a while, but I was taking too much as my FT3 levels were well over range and I felt really off.

Now back on Levo but I've increased my dose and my latest bloods show my FT3 is around middle of the range. But I seem to need a high dose of Levo to enable this.

I have Pernicious Anaemia so I absolutely need the jabs. Couldn't function without them. Tablets have never worked for me. I do use sublingual drops between jabs but I have no idea whether they work or not. I get jabs every two months.

If you are offered them I would strongly recommend taking them. They aren't easy to get on NHS. And low B12 can mimic both Fibro and Hypo symptoms.

[toopainful in reply to Sparklingsunshine]

Thanks so much for the info. We have to keep fighting I guess

[bookish]

Hi, although 350ish B12 may be enough for some, it is not enough reliably for everyone. Testing is tricky and can rule in a deficiency much easier than ruling one out. Viruses are known to affect one-carbon metabolism so can hit folate cycle and methionine cycle (B12, B9, B2, B6 etc and cofactors). You might find this interesting re fibro, ME and potential treatment variations depending on methyl group processing. Unfortunately it only looks at MTHFR, not at other one-carbon related SNPs, but it may give you some pointers ncbi.nlm.nih.gov/pmc/articl... I've had fibro since childhood plus post-viral issues after EBV, but a long family history of B12 and folate metabolism difficulties. Covid certainly also hit my methyl groups, as it has taken 18 months to get more or less back to where I was (having had some success treating myself and then lost some of that gain). My signs of hypothyroidism have improved with B12 and folate and other changes (plus age, as slow oestrogen metabolism was throwing my thyroid into chaos). If you still have tinnitus it may be that you are still too low in B12 for you (or folate) or need a different form of one or both. If you got a good response with B12 I'd make it a regular addition to your supplements. Cheers

[MEguy]

Thanks for the link bookish. My folate and D3 have recently been low and I have been taking supplements of these. I am well at the moment though (no fatigue or neurological symptoms except tinnitus). Hopefully they will work out what is wrong sooner or later but this paper is good. thanks

[Hidden]

There’s an ongoing debate about whether Fibro/CFS symptoms are actually hypothyroid symptoms.

I have no thyroid and am optimally medicated. I also suffer Fibro symptoms.

These conditions do co-exist

[MEguy in reply to Hidden]

Everywhere2, if you are optimally medicated, how can fibro be related then? just wondering. Is there a test you can do to see if you have enough thyroid in the cells?

[Hidden in reply to MEguy]

I accept that my thyroid is optimally medicated but that I still suffer from symptoms which are consistent with Fibromyalgia. Des has listed many of them below.

There is no reason whatever that a diagnosis of fibromyalgia is inconsistent with optimal thyroid levels.

The ongoing assertion that Fibromyalgia is undiagnosed hypothyroidism is not helpful.

[desquinn Partner Volunteer FMAUK Trustee in reply to Hidden]

The door is still open for all theories for cause or explanation of fibromyalgia but I do not think thyroid is present in the research conversation too much. It is definitely present as a differential diagnosis and should be ruled out if it is in the picture for an individual.

There is a lot of conversations from TUK and similar communities which were in part due to a research study that has not been replicated. Would be great if we could have a definitive line on this.

That being said, the origin, cause, or pathology of fibromyalgia is still to have a lot more discovered about it. We could see in the future that CFS /ME, Vulvodynia, Fibro, long covid and other conditions are on a spectrum or have connections between them. Or they may be unconnected and perhaps fibro has stratification within it as well and we have different types (and causes) of some "fibros" but that is speculation. It would explain why some people benefit from some treatments rather than others.

[Hidden in reply to desquinn]

I would agree with much of your response.

I think it highly likely that there is a spectrum of pain and fatigue which would accommodate several conditions.

It was many years before research established that there existed a spectrum of communication disorders which include Autism, Asperges, ADHD and other conditions. Prior to this, there was an ongoing and unhelpful debate about diagnoses and treatment.

Such a futile debate puts far too much emphasis on diagnosis at the expense of treatment.

[Sparklingsunshine in reply to Hidden]

I'm in a similar boat, Fibro diagnosed by Rheumy 16 years ago, along with EDS, personally I have some aspects of Fibro, muscle stiffness and poor sleep. But these can be true of EDS. One thing I dont have is fatigue, I have too much energy so it sometimes makes me wonder if I dont have Fibro at all, just my EDS making more of a nuisance of itself as I get older.

I was diagnosed with Hypothyroid 3 years ago and having heard of the idea of low thyroid hormones being responsible for Fibro symptoms was eager to see if Levothyroxine transformed me. It hasnt sadly, although I'm sure I'm much better than if I had been left undiagnosed.

I have felt pretty rough when not optimally medicated. My thyroid levels have been low, high and middling but I've never managed to eradicate all my niggling symptoms.

My take is that knowing how long and difficult it can be to get diagnosed as Hypothyroid, years in many cases, undoubtedly some people have Fibro symptoms which later turn out to be undiagnosed Hypo as there are many similarities. But its clearly not the case that every Fibro sufferer has thyroid issues. They are seperate entities.

[klr31]

I have M.E and Hashimoto's. I am optimally medicated but still have M.E symptoms so believe these are two separate conditions. I am more stable now I'm on sufficient thyroxine which I wasn't at one time years ago.

Karen

[MEguy in reply to klr31]

hi klr31, did you get a virus when coming down with ME do you remember or was it gradual? I can remember mine exactly as I suddenly felt dizzy and fatigued one month after recovering from a nasty virus.

[klr31 in reply to MEguy]

I got a virus before I got M.E and never recovered. I had had a lot of viruses in the years before I got M.E. I thought I'd get over the one before M.E but didn't. I think that my thyroid problems probably contributed to me getting M.E, although I wasn't aware of that at the time. It took a while for me to learn about thyroid issues and realise that I was under medicated as my doctor didn't know what he was doing.

Karen

[klr31 in reply to MEguy]

Do you know what your blood test results are showing?

[MEguy in reply to klr31]

No I haven't had any done for a year or more. But the last thyroid test was about in the middle of the ranges and lowish TSH if I remember. When I had a relapse of ME, I took 1000 mcg B12 and the symptoms seemed to go away. The symptoms were myclonic jerks, fatigue and tremor feeling inside. I also had some PEM (post exertional malaise) at that time. But I am ok at the moment.

[klr31 in reply to MEguy]

Maybe you should get tested again and have B12 tested too.

Karen

[MEguy in reply to klr31]

I may do soon yeh. The thing is though, I stopped taking B12 yet the symptoms have not come back. I would have thought the symptoms would have come back if it was related to B12 supplementation.

[klr31]

I'm not sure how long B12 can stay in your system. Check D, folate and ferritin too.