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Cysts on the thyroid coupled with fatigue and virtually instant change!

(13 Posts)
Jules23 Wed 14-Oct-20 18:39:59

Hi
I wonder if anyone else who has had a cyst on their thyroid experienced severe fatigue? I had been feeling overwhelmed with tiredness, barely able to get out of bed some days, then it was discovered that I had a cyst on my thyroid. The day after having it drained I felt completely back to my old energetic self and almost instantly - the next day in fact. Doctors I saw said the two were unrelated but it was too much of a coincidence for me to think not. The fatigue appeared before the cyst so the argument for it being the worry of the lump doesn’t ring true plus I don’t feel I was worried as I just assumed it must be thyroid problems (the lump) and it would be fine.

NotTooOld Wed 14-Oct-20 22:07:22

Sorry, I can't comment on that, Jules, but I expect someone else will be along in a minute. Glad you are feeling better though.

EilaRose Thu 15-Oct-20 00:59:07

Jules I had 13 cysts drained, the specialist didn't bother with the other smaller ones, but due to the size and high number he suggested complete rest for a day or two, I also had a plane trip home, so he was concerned about that too. He also said they may have to be drained again if they refilled, but that hasn't been a problem. Only side effect was a slightly deeper voice and now not being able to sing in tune, due to them being wrapped around vocal chords.

Local GP had diagnosed terminal thyroid cancer with a prognosis of 6 months to live...if I was lucky!! That was early 1997, so (mentally) I was a bit of a mess, but fought on to get another opinion which was 'all clear, no signs of cancer', now who to believe with two totally opposite diagnosis. It seems the pathology lab got my tests/results mixed up with another patient who probably died unexpectedly due to having my results but all concerned went silent and nobody would discuss further.

For the last 18 yrs I've had CFS/ME brought on by another unrelated problem so it's difficult to say if the cysts had any impact, or not.

Not much help, but hope you get better support than I did. ;-)

welbeck Thu 15-Oct-20 01:13:22

sorry don't know about cysts.
but can i ask, does anyone know what would be the situation if doc recommends thyroxine for underactive thyroid, but patient declines to take.
this is a patient who has never taken any thyroxine.
does anyone know if the levels for intervention have changed, that it is prescribed sooner than previously ?

Sark Thu 15-Oct-20 06:42:03

I don't know about cysts on the thyroid but my DD had tumours on 2 of her parathyroid glands and the main symptom was crushing tiredness. Straight after the surgery to remove them the tiredness improved dramatically. Unfortunately she is experiencing the same symptoms again and so has to be tested to see if it is back.
Sending best wishes Jules23

EilaRose Thu 15-Oct-20 07:12:13

welbeck I'm not qualified to give advice and you should check with GP and/or Endocrinologist..but, the GP who incorrectly diagnosed me wanted to give Thyroxine plus Radiation followed by Chemo.

This was when I phoned the Cancer Council (not UK, but you would have something similar I guess?) and the trained nurses there told me 'no way' should I go ahead with this treatment given what was reported from the latest round of tests as it would have a detrimental affect. This latest test report stated there was NO cancer, after the initial tests were totally opposite. It still sends shivers down my spine to think a pathology lab could get it so wrong.

In saying that, my thyroid has never been underactive, it has always functioned perfectly, and still does.

My suggestion is to do what I did and get further opinions and not take 'one' GP's diagnosis as gospel. Then when if/when you get a differing diagnosis demand to be shown proof of why the differences. I had to apologise to the Endo because I really put him through the wringer, but given what I'd been through he totally understood and was willing to discuss and provide proof.

Btw, I'm not normally so demanding although I still do my own research. Hope some of this helps?

NanKate Thu 15-Oct-20 07:32:46

On the subject of the thyroid I have been taking thyroxine for about 20 years. I have never regained my former energy and am at present seeing an Endocrinologist who is trying to reduce my daily intake ! Last time this happened I could hardly function.

I know thyroxine works for many people but is only partially effective for me.

I am grateful that another Gransnetter is giving me suggestions of complementary/alternative ways to improve my energy.

Sorry to moan, I just wanted to flag up thyroxine is not a wonder drug, for me anyway.

MerylStreep Thu 15-Oct-20 07:41:34

NanKate
Have you had your B12 checked recently?

dragonfly46 Thu 15-Oct-20 07:42:03

Jules yes I have twice had cysts on my thyroid and each time felt quite ill before they came up. One I had drained in the Netherlands and the other went away on its own.

mokryna Thu 15-Oct-20 08:01:00

I had an operation to have two taken off and have been taking Levothyrox. for the last 5 years. I have a scan on my thyroid every year as well as blood tests to control the two smaller ones left. I have never heard of cysts being drained but I live in France.

I had no side effects as it was only through having a different examination that they were discovered in the first place. I had not been feel ill.

TerriBull Thu 15-Oct-20 08:08:59

I just want to echo everything NanKate has posted, I've also been on Thyroxine for over 20 years now, currently taking 150 mcg, it certainly isn't a silver bullet as far as restoring energy levels, some days are worse than others, but I often feel something is missing and that something is vitality. I started taking Vitamin B12 but that hasn't made a lot of difference either.

NanKate Fri 16-Oct-20 16:03:21

Thanks Meryl for the suggestion I will ask the Endo specialist in January.

Terri it helps in a way to know that I am not the only one who does not respond like others I know on Thyroxine. I send my sympathies ?

joyg67 Wed 21-Oct-20 16:34:35

I have also had para thyroid problems and was really tired I had one removed but I was told that it can return
I am have extreme tiredness again and you have made me wonder if it is my para thyroids again