The problem with ME/CFS and hypoThyroid - Thyroid UK

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The problem with ME/CFS and hypoThyroid

selftreatendo
selftreatendo

The problem is most people get Me/CFS after a viral or other infection usually. Whereas I think people with hypothyroidism may just slowly realise over time they are ill. ME/CFS people get ill suddenly. Therefore I am not so sure now if they are the same thing or not. WHat could possibly go wrong with the thyroid after an infection unless you get antibodies attacking the gland which a lot of people don't? I can't quite see it. This is how I got ill anyway. I was healthy one day and had had a big infection a few months before and the next day it hit me.

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Technically the antibodies do not attack the glad. They are present after an attack I believe.

So you had a big infection a few months before and then the next day it hit you. In other words your illness built up over several months it didn't come on overnight.

SeasideSusie
SeasideSusieAdministrator

selftreatendo

Lalatoot is correct. It's not antibodies that attack the thyroid, it's the immune system, the antibodies basically mop up the mess left behind.

I had a diagnosis of Post Viral Fatigue by a GP, and then CFS by a well known practioner. What neither took into account was that I had already been hypothyroid - diagnosed and treated for well over 25 years. What both failed to do was to check my nutrient levels and adrenals, when I checked them myself I had severe Vit D deficiency, low ferritin and very low folate, and adrenal plus sex hormone problems. I sorted these myself, it seems things may have moved on in that department in the almost 20 years since these doctors failed me.

HI there may I ask how you sorted out your sex hormone issue - I had the same scenario.

SeasideSusie
SeasideSusieAdministrator in reply to posthinking01

posthinking01

I was consulting with a practioner at the time and put on progesterone cream. I haven't tested sex hormones since, it's very expensive and the cost is beyond my budget with everything else so the reality is that I don't know if the sex hormone issue has been resolved or not, but I have addressed everything else and all optimal.

HI - I have a sex hormone issue due to adrenal issues but unfortunately progesterone cream made my breast tissue enlarge and I didn't need that and it worried me. Now taking a pregnenalone cream which makes all the sex hormones and able to tolerate that. But I am on steroids for life which doesn't help. From research of my symptoms I could see it was progesterone that I needed but was difficult to get it to the right pathway - via the adrenals which Pregnenalone will do.

Thanks for sharing.

Can I ask posthinking 01 which pregnenolone cream you used and if you have any links to information about using pregnenolone cream

Bio vea

thanks - I'll check that out

Autoimmune thyroid disease aka hashimotos is the most common cause of hypothyroidism. I have seen it stated that 90% of hypothyroid cases are autoimmune. So I would disagree with your statement that a lot of people don't get autoimmune attacks.

jimh111
jimh111 in reply to Lalatoot

I think they are both saying autoimmune attacks damage the thyroid but it's not caused by antibodies attacking the thyroid. The antibodies are a reflection of the ongoing autoimmunity. Most cases of primary hypothyroidism are caused by autoimmunity, at least in iodine sufficient countries. Strictly speaking Hashimoto's is restricted to autoimmune cases where there is thyroiditis (inflammation of the thyroid, usuallly with a goiter). Sadly, other forms of hypothyroidism are not recognised. Hence patients with 'normal' blood tests are often ignored.

But my thyroid antibodies are normal my GP said so I do not have hashis or autoimmune disease I think. He never shows me the results though, he just says normal if I ask or he tells me and he told me my thyroid antibodies were OK. He ignored my second request for B12 injections. I couldn't believe it. They are all Indian doctors at my practice except one so I have to be careful how I approach them and am always polite but they don't want to help and I can't afford privtae injections. STUCK LOL

SeasideSusie
SeasideSusieAdministrator in reply to selftreatendo

selftreatendo

He never shows me the results though, he just says normal if I ask or he tells me and he told me my thyroid antibodies were OK

You don't ask the doctor for the results, as you have found out, they don't like sharing them with patients. If you don't have online access to your results (some surgeries in England do) then ask the receptionist for a print out - don't accept verbal or hand written results, always a print out, you are legally entitled to your results without question or charge unless the following applies:

Can my request for access be refused?

A healthcare provider can refuse access if the request is manifestly unfounded or excessive or if it is likely to cause serious physical or mental harm to the patient or another person. Where access has been refused on this basis, you must be given an explanation as to why access has been refused and you must also be informed that you have the right to complain to the Information Commissioner’s Office (ICO).

I do not have antibodies either but we are the minority.

SeasideSusie I asked the receptionist a few weeks ago and she said I must book an appointment with the GP. So I had to book a telephone appointment and he gave me the results over the phone although he seemed a bit reluctant at first as he said why do I want to know? This was the English doctor. I also applied for online account and linked up to my surgery but you can't do anything. All you can do is see your diagnosis and your NHS number etc but there are no test results online. This practice does not like patients finding out their results. I am trying hard to see if Post Viral Fatigue SYndrome is hypothyroid or B12 deficiency but I am pretty sure now my thyroid results are normal like they alway have been. Just B12 was low. I will try once again next week to see if they will give me injections for a month or two to see if I improve.

SeasideSusie
SeasideSusieAdministrator in reply to selftreatendo

selftreatendo

This practice does not like patients finding out their results

Then you remind them that they are breaking the law.

If necessary you put in a Subject Access Request.

I believe you have to ask for something called 'enhanced access' to be able to see blood test results on line, which involves showing 2 forms of I.D. in order for them to set it up. Or you can do it the old fashioned way by asking for a subject access request which takes about a month to do because they have to go through your notes and redact any references to third parties and anything that could cause harm to you or others.

OK thanks. But it is littered now with psychiatric stuff over the last 8 years about 4 times now so this is spoiling everything. I will ask them to put it on my online account through Enhanced Disclosure. I am going to ask them for all CFS/ME notes (which will be actually ok for them as this practice I have never consulted ME/CFS with them in 8 years as I had recovered 13 years ago.) So it shouldn't be too difficult to do. I will post them a letter rather than taking it in and send it recorded delivery. Perhaps I should also look at the psychiatric stuff they have too IDK.

I think i would advise caution before thinking about trying to see any psychiatric history. It can be pretty upsetting to see what's been written in the past, and could just be giving yourself loads more headf*ck to deal with, if all you really want are your thyroid results.

It's taken me several months to stop being cross at a few comments GP's had made on my notes..... and feeling like that isn't helpful in trying to find a positive way forward. It's just a waste of energy and time.

It seems to me you are looking for a black or white answer to "is it ME/cfs or is it Thyroid"... in my opinion NOBODY knows what causes ME, and i suspect that when/if there are answers to that question it will not just be one thing , but a subtle combination of many, with a triggering event.

Thyroid problems are also not a black and white 'fixed /not fixed' issue. Even some people with an undisputed case of (and known cause for) Thyroid disease often have to spend months/years adjusting their Thyroid Hormone Replacement and fixing vitamin/mineral levels to get the body to be able to use the hormones properly..... and even then , some of them don't get 'well' again.

All any of us can do when trying to improve how we feel, regardless of if we have Thyroid or ME written on our notes, is to improve what ever we can in our physical and mental health, and try to stay on a positive , stable , course.

p.s

You probably know this already , and it may not be relevant to you,but have you ever spoken to any of the psychiatrists about thyroid?, they do sometimes use T3 to treat resistant depression.

Best Wishes

tat

hI tattybogle Thanks. There is a book called "Plague" by Dr Judy Mikovits who in 2011 came out with the findings of a retrovirus as the cause of ME/CFS. It was called the XMRV. But another scientist found it later to be a laboratory contaminant. XMRV is one of the MLVs a Mouse virus. Another scientist earlier was studying ME patients blood and she also came up with a Retrovirus but it could not be reconfirmed by the CDC labs so they stopped her research! Whatever the cause of ME/CFS, one has to be able to show how it can happen in EPIDEMIC FORM which obviously means an infectious cause/onset. Thanks

Hi

Normal results mean nothing , you can be in the reference range and feel dreadful. Ive been 0.01 away from the top of the reference range with raging hypo symptoms and a very obvious goitre. But because I was in the reference range I was fine. Always ask for the numbers.

selftreatendo
selftreatendo in reply to AS14

AS14 How can you still feel so bad at the top of the range (0.01 away)? If the top of the range means you are still feeling ill, what's the point of the range? lol

You can feel ill at the top of the range if you are one of the people whose body needs fewer thyroid hormones and you actually need to be at the bottom of the range. You can have too much of a good thing.

I remember I tried thyroxine T4 and T3 once for ME/CFS when I was still ill.

If I remember right, I felt a little hot and sweaty after a week or two for a minute at a time or so. So I gathered it might be too much medication and quit as the symptoms did not go away. So whhile I am happy that people here have found they were hypothyroid and improved on meds, it did not work for me. I just wish it had. So I have no idea what my ME was/is.

I just woke up from an evening nap. While asleep I felt a sort of constant throbbing throughout my body. When I get up, I felt it for a while but it sort of subsides. Feels electric sort of. I don'r know if this is my immune system or what. Must be I suppose. They say in ME/CFS the immune system is activated. But when I ask my doc about my immunity he just says your white cells are all normal. It's the only thing I get every time. It's just WHY is it making me feel electric or throbbing? Feels weird. When awake it's not too bad or I don't feel it. But the tremor I think has gone after B12. There is a difference between throbbing and tremoring sort of lol. Maybe they are one and the same. Who knows

HI there I believe the ME/CFS issue is an adrenal gland issue - the adrenals having become exhausted fighting the virus - same as people recovering from Covid 19 say they are exhausted - its an adrenal gland issue.

You are most likely correct, in which case then god help the "long haulers" (as the media is calling the post covid-fatigue sufferers who were on the news yesterday) as the NHS will never even think to consider a problem with the adrenals glands.

Maybe but then I am sure my adrenals were working fine when I first got ill. If they weren't they would have diagnosed me with something else like Addisons Disease or something. I remember seeing an article saying adrenal glands of people with ME/CFS are smaller though. Don't know if this is still valid.

Hi Selftreatendo

I’ve just read all your posts and your replies so that I can give you an informed response which may be helpful.

Chronic Fatigue has been called all sorts of things in recent years. ME (Myalgic Encephalitis); Yuppie Flu 🙄; CFS.

The point is that CFS is a symptom and not a diagnosis. Human beings get tired, weary, exhausted - but they do not suffer from CFS unless they have an underlying medical condition. These underlying conditions can include diabetes, hypothyroidism/Hashis, Lyme disease and any number of autoimmune conditions.

A good GP, if they’re nagged enough, will eliminate diabetes and thyroid issues. They often think that their work is finished then and slap the ME/CFS label on you and tell you there’s no cure: Have little walks. Find a hobby. Divorce your husband. See a Counsellor.

If you’re very unlucky, they may decide that you’re depressed and prescribe anti-depressants that make you even more tired. Then, they’ll say that you’re very depressed and you’ll get an increased dose and wander round in a stupor until the penny drops and you wean yourself off the damned things.

Not often considered is the myriad of autoimmune diseases that go hand in hand with chronic fatigue. I chased my diagnosis until I was completely worn out but I got one. I was finally dx a year ago with Sjrogrens Syndrome. I also have peripheral neuropathy which is a good friend of Sjrogrens and autoimmune disease. It takes on average 4.8 years to dx Sjrogrens. Spot on for me. 5 years after my symptoms came on quite suddenly I got the correct dx.

You must understand too just how profound fatigue can be. - but I’m sure you do 😊. Last week I was in a hospital (without my husband because of Covid). It wasn’t a hospital I was familiar with. I’d been in there for a couple of days and they’d happily pushed me round in a wheelchair from here to there. When it was time to be discharged, pride took over and I insisted that I didn’t need any help and that I could get out to the car park where my husband would be waiting for me. I walked along what seemed like miles of deserted corridors, taking wrong turns, going back on myself, not being able to find anyone to ask the way. I was so totally physically and mentally exhausted that in the end I just leaned against a wall, slid down it and sat on the floor and cried.

When I read of people who can only do 30 minutes in the gym instead of their usual hour; or feel so tired that they’ve had to reduce their working hours to part time, I feel desperately sorry for the limitations placed on their lifestyle - but I also hope for their sake that this is as bad as it gets.

Never stop looking for answers - but make sure that you look outside the box.

Never give up. You are your own best advocate and you know your body better than anyone.

My very best wishes to you 😊

I now have Tinnitus ringing out of the top of my head. It started yesterday after reluctantly taking a psychotic medicine called Olanzapine. I had RLS immediately for 24hrs and then this tinnitus thing. The RSL wore off but not the tinnitus. Honestly, the psychiatrist tries to help one thing and makes other symptoms. Another symptom I always get for 24hrs with this med is a dry mouth. lol.

I just had a language lesson online for an hour and afterwards felt mentally fatigues somewhat. So I lay down and had a nap. When I woke up I felt throbbing all over again and checked symptoms online and it came up with either MS or Restless Legs Syndrome that the consultant thought it was a few weeks ago. I had pins and needles in one hand for 5 minutes on waking up. Then it disappeared but the throbbing I can still feel although now as severe as when waking up. I also had creepy crawly feeling and aslightly slurred speech. I wonder whether it is MS rather than ME/CFS now. It says these feelings are due to the nerves or something/ The diagnosis could be any of RLS, ME/CFS or MS. Noone wants to test me though for anything as I have a history of ME/CFS so they don't do anything and it is scaring me out of my wits. ANyone got any ideas what to do?

Don't pay too much attention to weird symptoms at the moment. Wait a couple of weeks at least until you've got used to taking the meds again, then see how you feel. I presume they take a while to settle into, just like thyroid treatment does, especially if you've changed tablet , or had a break for a while.

I'n the meantime try and keep your mind off worrying about it. Rest when you need to .Then find something to do, or go for a walk as soon as you feel able. Doesn't matter what, as long as it keeps you focused on something else.

Language class sounds like a good idea , what are you learning?

Thanks. Which meds are you talking about getting used to again? I started learning Chinese. a bit of Mandarin and a bit of Cantonese. I find them interesting to learn. Difficult to pronounce the words correctly though.

I meant the olanzapine. I've never been brave enough to look into chinese/mandarin even though i am interested, .... i'm impressed

I bet it's interesting trying to decide on the right translation. Pronounciation must be feindish!~ I think i'd prefer to try writing it with one of those paintbrushes... :)

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