Who got ill after a viral/bacterial infection?

[selftreatendo]

Hello

I am wondering how many of you got ill with either hypo or ME/CFS after an infection? If you got diagnosed hypo or ME/CFS too? And if you got diagnosed hypo and are on meds, did you recover? And if you got diagnosed ME/CFS. did you recover a) on thyroid meds/B12 or b) you have not tried or not recovered.

[AS14]

Hi

I have m.e/cfs and hypothyroidism, the m.e was after a viral infection, thyroid years later.

Nine years ago I had aTT and was put on levothyroxine and it made a big difference to how I felt, it was the difference between being bed bound and not and generally having a much better quality of life. For the first time in a very long time I could imagine myself getting well. I cant say if it got rid of all my symptoms because I was so unwell before hand, only that when put on levo my health improved significantly.

A year ago it stopped working and Im back to where I was, Im very unwell and have severe hypo symptoms. Its became obvious that Im not converting T4/T3 properly and Im hoping to start T3 soon.

M.e doesnt have all the symptoms of hypo but theres many symptoms that are very similar the two could easily be confused.

Ive read countless stories of people being diagnosed with m.e only to find out they actually had thyroid disease. There are some doctors who say m.e is caused by low T3 and thats why its so similar to hypothyroidism.

Some vitamin deficiencies can also mimic both thyroid disease and m.e.

I had an excellent m.e doctor, he was very thorough and I am confident in his diagnosis. However I Ive no way of knowing when thyroid became a problem as blood tests always said satisfactory, but I strongly suspect its been a lot longer than than I thought.

What ever the cause of m.e is a diagnosis of m.e should not be given until thyroid disease is ruled out by a good endocrinologist.

[selftreatendo in reply to AS14]

Hi AS14 Do you mean your ME as well as hypo symptoms dramatically improved when you first started thyroxine therapy or just the hypo symptoms?

Did the people you know who got ME and later got diagnosed hypo instead have a viral infection before they first got diagnosed with ME do you know?

I am trying to work out if ME is actually a disease different to hypothyroidism or if it is similar as you say low T3 is involved. But I just did my FT3 and it is about 40% through the normal range so about half way.

When you say you have a good ME doctor, what do you mean as no GP I know knows much about ME or how to treat it lol. Thanks Oh how do youknow what is ME symptoms and wht is Thyroid? Both have fatigue and concentration problems don't they? SO how do you distinguish.

Do you actually think you have two illnesses ME and Hypo or jusy Hypo or not sure? Thanks

[AS14 in reply to selftreatendo]

Hi

My m.e doctor was not my gp he was one of a group of doctors who were part of a research group, you couldnt of got better when it came to m.e. Sadly he passed away a couple of years ago and there isnt another one like him.

M.e is a disease on its own although it has some symptoms that resemble other conditions like thyroid disease and vitamin deficiencies. However it has many symptoms that are not, and for that reason if a diagnosis is based on symptoms being exhaustion and brain fog alone its entirely possible you dont have m.e. The same goes for hypothyroidism some symptoms the same some are not, and making a diagnosis based on exhaustion and brain fog with out having all the information cannot give you a diagnosis . The same goes for low T3, but wether thats a disease in its own right I dont know. Yes Im exhausted and cant think straight but Ive also got severely dry and cracked skin that itches like crazy constantly, painful soles of my feet and plenty more that I only get when hypo. The same goes for m.e some that are distinct to it, for me its easy to tell the difference. Both m.e and hypo have a lot of symptoms and I couldnt possibly list them all here but theyre easily found on a internet search. I had an obvious goitre and I did have hypo symptoms but it wasnt until the goitre had grown into my chest and my thyroid removed that a diagnosis was made.

When I started on levo some of my symptoms improved significantly which showed me that some of what Id been experiencing must of been hypo symptoms, levo was the only thing different in my life so it had to be. I cant say for sure how well it worked, it might of been 100% effective it might not its impossible to say because I was so ill before hand. All I know is I felt a great deal better when put on levo. I know was a lot less tired, could think better, and just felt better over all , I had much better quality of life. Ive gone back along way and my symptoms are definitely hypo and Im trying to get it sorted but know how much better Im going to feel when it is.

Theres different theories on what causes m.e but I did have a virus and I also have low T3, theres nothing I can do about the virus but I can improve my T3. Wether it helps the m.e or not only time will tell but getting rid of my hypo symptoms is what Im aiming for.

I dont know anyone personally that has used to T3 to recover from m.e but Ive read of plenty of peoples accounts of how it helped them and there has been some scientific studies done that have shown some promising results. Again I dont know anyone personally who had a diagnosis of m.e but it turned out to be thyroid, but Ive read of it countless times and theres people on this forum who it happened too. Im afraid I dont have any links but its all easily found on the internet, everything from personal accounts to scientific research.

Its impossible to tell the difference between hypo exhaustion and brain fog to the same in m.e, both exactly the same symptoms just with a different name.

Get your thyroid results, numbers and reference range, post them to the forum and Im sure some one with far more knowledge than me with help you out. Do the same for vitamins and minerals.

If all that seems fine then maybe you have m.e but even then there are things you can do to help yourself, people can and do get well.

Forget putting a label on your symptoms for now its not important, get accurate information first.

[selftreatendo in reply to AS14]

AS14 The thing about ME is most people get it after an infection although some get it after poisoning. My thyroid biochemistry has always been adequate normal range if these tests are actually anything to go by. So I have always been told that my thyroid is working fine. Perhaps that is why I have been only moderatly or mildly ill not severely ill. Actually a diagnosis of ME means usually you have some cognitive problems (can't concentrate, balance, word finding, short term memory loss), Orthostatic Intolerance (can't stand up for long without feeling light headed) and a continuous fatigue not gone away with rest. And symptoms made worse on exercise. This is the basic symptoms needed for ME once other illnesses are excluded like an underactive thyroid gland or anemia. But why GOD made ME with similar symptoms to hypo I don't know. Some researchers have tried finding a novel Retrovirus but nothing has been proven yet.

[AS14 in reply to selftreatendo]

Hi

My thyroid tests were always classed as normal too, even with a very obvious goitre told its all working fine. I was going to my gp for years complaining of getting out of breath and trouble swallowing and was told its because Im over weight . Long story short my breathing got a lot worse to the point my husband had to get the gp out and by chance it was a locum and she was great got me a hospital appointment the next day. A ct scan revealed what the consultant described as one of the biggest thyroids he’d ever seen, no wonder I couldnt breath properly. The surgeon who took it out said the same and that it looked like a very sick thyroid and to get to the size it had it must of been failing for years. But apparently because my results were in the reference range I was fine, its ludicrous.

It shows how ridiculous going off that range is, and as Ive already said Ive read of so many people with apparently normal results but were actually really unwell.

You describe m.e well those are the symptoms I have, its a lot more than fatigue and brain fog.

During the last nine years Ive been on levo Ive been hypo and hyper, usually when Ive lost or gained a significant amount of weight but the rest of the time I was stable on certain dose.

Because Ive been optimally medicated I know how different that makes me feel, and I sharp know when Im not. For me the difference is disabling I cannot function but when its good oh my word its like night and day.

When Ive been good on levo doing the things that help m.e, all the basics, sleep, stress reduction staying with in my limits and carefully building on, etc all work and I make progress. Its impossible at the moment.

It sorts of feels like that feeling that theres something you just cant put your finger on thats missing. If you know what I mean.Thyroid was very much a light bulb moment for me.

Im part of an m.e recovery group a very positive upbeat one where lots of people have either recovered or on their way. Everyone from severely affected to relatively mild they all make progress. Ive no idea how far Id get but I know with out good thyroid function I wont get there.

Ive had m.e for 30 years so Ive seen and heard it all and can hands down say the only thing that can help m.e is yourself. No weird programs, pills, potions, GET ( the worst thing you could do) just all straight forward self help with support along the way. Ive seen people start to improve in weeks.

You wont know what if any of your symptoms are thyroid related with out accurate results, satisfactory is worthless. A doctor should be listening to the patient instead of going off a reference range which is inadequate at best.

M.e can be a lazy diagnosis, doctor says normal thyroid test your symptoms must be m.e. It happens far more than you think.

Check out Toby Morrison cfs recovery on youtube, hes got loads of videos. I watched everyone several times before I joined, the recovery program does cost to join but you dont really need its pretty much all in his videos. Hes just a guy in his early thirties who had m,e and got well. If youre interested Id start with the cfs golden rules video.

[selftreatendo in reply to AS14]

I am 90- 93% well. I was 98%. Your case is confusing since you had Me and thyroid issues. First you said you got well on levo. I wonder why it stopped working. If it is a conversion problem, maybe T3 will cure you.

[AS14 in reply to selftreatendo]

Hi

It gets even more confusing because I lost my parathyroid glands during surgery so was left with hypoparathyroidism. Its nothing to do with thyroid just means “ next to thyroid”. Basically I cant maintain calcium levels so need medication and have to watch my diet. Thankfully its not causing any issues, my endo is good in that way.

Im not having a pity party for myself or anything but goodness it can all be a bit of a hassle.

I didnt get well on levo I improved significantly, so thyroid must of been at least partly to blame.

It stopped working a year ago not really sure why but I do know its a conversion problem my T3 barely scrapes into the bottom of the range.

Im hoping to start T3 see if it helps.

Take care and I hope you get back to 100% soon.