How can I get a diagnosis when my symptoms could be caused by so many conditions?

[MaggieSylvie]

Hi everyone,

I have issues with falling asleep at the laptop, falling around like drunk when I stand up; eyesight – lacking focus and weirdly shaking hands, mostly upon arising. My voice is changing, too - deeper and weaker.

The most obvious thing to blame would be Pregabalin but I'm on a relatively low dose (200 mg daily) and it's been getting worse, but I have been on this low dosage for months.

Could blood cancer - MDS - be the culprit? Low haemaglobin, that causes a lack of oxygen to be delivered around the body.

Could it be untreated hypothyroidism - clearly there's an urgent problem and I'm waiting for my test to arrive, but then, as the best time to do it with MMH is Monday or Tuesday, that will have to wait until next week.

Last year the surgery nurse told me that if I stepped any further into the obese area of the chart, I might become borderline diabetic and there has been little change in my weight. I do find that if I have something to eat I feel better when I start to feel weak.

Could it be my back injury and my lack of activity other than the keyboard?

I know you can't diagnose but does anyone else experience similar confusing symptoms?

[SlowDragon Administrator]

Previous post suggests central hypothyroidism

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You need FULL thyroid and vitamin testing - suggest you consider Blue Horizon test as includes cortisol

Recommended on here that all thyroid blood tests early morning, ideally before 9am

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

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[MaggieSylvie in reply to SlowDragon]

Thanks, SlowDragon, my testing kit has just arrived, so too late to do it before 9 am on Tuesday. I'll have to wait until next Monday.

[ValDee88 in reply to MaggieSylvie]

Please remember (if you are in the UK) that Monday is a Bank Holiday and Wednesday 31st is a postal strike day.

[MaggieSylvie in reply to ValDee88]

Thanks for the reminder! No idea.

[SlowDragon Administrator in reply to MaggieSylvie]

You could do tomorrow morning and post back with guaranteed 24 hour delivery

[MaggieSylvie in reply to SlowDragon]

Thanks, not so slowDragon! I'm hoping my partner will be able to help me in the morning but he's asleep right now so he can't be asked. Interpret that any way you like! I have got an appointment in three weeks with the surgery nurse, so that's a start (if three weeks isn't too long to wait).

[Fruitandnutcase]

I was prescribed a low dose of pregabalin (Lyrica) in 2020 after I developed CRPS when the cast came off my arm.Even though it was a low dose it really didn’t agree with my and my vision was one of the things that were badly affected. I couldn’t see to read or watch TV - vision was so blurred and for some reason or another my world looked grey. I noticed that after I stopped taking it everything on my world brightened up. A very odd side effect.

I felt dizzy and had to hold onto my other half when I was out because I couldn’t walk in a straight line.

I also felt really, really depressed - not suicidal but Definitely not myself - and that also went back to normal after I spoke to my doctor about it then weaned myself off the stuff.

If you are worried about your weight ask your doctor to refer you to Second Nature - it’s feee - they run an online weight loss and well being website that is really good and they are recognised by the NHS secondnature.org

[mabu2010 in reply to Fruitandnutcase]

I think the link is:

page.secondnature.io/aw-wei...

[Fruitandnutcase in reply to mabu2010]

Thank you for that - don’t know how I ended up with what I did.

[MaggieSylvie in reply to Fruitandnutcase]

I felt euphoric on the first day after taking Pregabalin at night. Energy from my childhood had returned.

[Fruitandnutcase in reply to MaggieSylvie]

Do you still feel like that? A little while after I stopped the pregabalin the hand physiotherapist I was working with suggested I try gabapentin which I did with pretty much the same results. I guess the ‘gaba’ drugs just didn’t agree with me.Now when I was prescribed a three month tapering course of steroids for my inflammatory arthritis I felt like Superwoman as soon as I started them. Goes to show - different drugs for different people.

[MaggieSylvie in reply to Fruitandnutcase]

I sometimes feel really good, but most of the time, I feel like what most normal people feel, I suppose - until the evening, when I either lose energy or gain it.

[MaggieSylvie in reply to Fruitandnutcase]

When I say I feel like what most normal people feel, I mean I haven't felt normal for a long time but didn't know it. Pregabalin reminded me how I felt when I was 10 years old.

[annnsandell]

Have you been to your GP with a list of these symptoms?

[MaggieSylvie in reply to annnsandell]

I've got my annual review in September and don't want to bother them. In any case, they will have received my blood results and should be thinking what to do next about my thyroid/pituitary. No doubt they'll put me on levothyroxine, no matter what, but so far they haven't got my TSH result.

[MaggieSylvie in reply to annnsandell]

No. I only got my results last Monday! Got on to MMH and only received the test today. I wouldn't need to do that if the health service would test for T3! But got a missed call from surgery on my phone from Friday! Need to phone them.

[Sparklingsunshine]

Hi

I felt very weird last week, shaky, weak legs, trembling hands, I thought at first I was on too much thyroid hormone but no the culprit was Amytriptyline which I'd started on a low dose for migraine prevention.

I spoke to a doctor and they confirmed tremor and shakiness are indeed known side effects. I came off it and the shakes stopped. Many drugs can cause these sensations. Even if you've been on them for sometime. I'm now trying a similar drug to see if the shakes come back.

The only way to know if its the Pregablin is not to take it but you should check with a doctor first as many drugs should not be stopped suddenly and without medical supervision.

[MaggieSylvie in reply to Sparklingsunshine]

I don't want to stop it. I did that in the early days when I inadvertently ran out of them. I didn't have any bad effects but I felt I had to start from scratch again, which I did, but this time, I have stayed on the dose that seems to do me the most good.

[Sparklingsunshine in reply to MaggieSylvie]

Hi

We're all different. I have Fibromyalgia and didn't get on with Pregablin at all. If you're worried do consult your GP. Unfortunately many illnesses have so many similar symptoms. And thyroid problems have loads.

[MaggieSylvie in reply to Sparklingsunshine]

I have fibromyalgia as well and hated amitriptylline. I love pregabalin as it helps with several things. My migraines went completely after a while, and I had thought they would only get worse. Lots of other pain, so FM has taken a backstand. I have a missed call from the surgery but I need to get blood test first! I just don't know what to do about the timing of it.

[MaggieSylvie in reply to Sparklingsunshine]

Hi Sparklingsunshine, After doing all my "messages" today, I rang the surgery (there was a missed call but I had forgotten it had been dealt with). Anyway, I got an appointment with a nurse at the surgery on 13th, in about three weeks time, in the hopes she will refer me to an endocrinologist. Then I have my annual review at the end of September, by which time, hopefully, things will be more clear. If I get a nice endo, perhaps I can get some holistic treatment.

[Polly91]

When I was sick with Lyme & v hypo with low T3 I was told by my practitioner that the aetiology of conditions like ME, fibromyalgia and chronic fatigue is infections and low thyroid. The infections can be Lyme, CMV, EBV (glandular fever) or even Candida. This pathogenic load & the toxins they produce are overwhelming to the body (probably due to low T3) & it shuts down the body’s immune system & other systems get shut down as a survival mode so body just focuses on basics like respiration, digestion, excretion etc but energy production is severely hampered.

I don’t know if this is true but the theory always stayed with me and having got better (with a lot of help from this group as well as naturopaths) I am certain that when my T3 gets low that’s when I get viruses. I now know I have to tackle & prevent those colds and sore throats etc by trying to ensure my thyroid function and vitamin & mineral levels are optional (not just within range).

I hope you can get well again. Being sick and tired stinks and we all deserve better. It’s a pity mainstream medicine doesn’t understand conditions like fibromyalgia & Lyme etc.

[MaggieSylvie in reply to Polly91]

I have fibromyalgia, blood cancer, pain from compression fractures in the spine, osteoarthritis, and now (most probably) centralised hypothyroidism. Despite all these conditions I have lived 77 years with little more than colds, although until I had a defected septum operated on in my thirties, I suffered from plenty of those. But don't have any infections to blame on anything.

[MaggieSylvie in reply to Polly91]

Having said that, my thyroid has been looked at a few times, partly because it has a visible lump or deviation but that hasn't changed over the years. The medics at the time have always disregarded any findings.

[Sparklingsunshine in reply to Polly91]

Hi

I don't think the medics can agree on what causes Fibro. Years ago it wasn't even recognised as a condition. I've seen various theories over the years, psychosomatic, neurological, problems with the central nervous system. Whether it's triggered by a virus, stress, trauma, genetics or just bad luck.

Recently I read a paper suggesting it could be an autoimmune condition. Which has merit as fibro mainly affects women as do most AI conditions. The researchers believe they have identified the antibodies responsible.

It could be a combination of things, an autoimmune condition that attacks the central nervous system and causes it to malfunction and throw up symptoms that aren't really there like pain. Its tough because fibro is a mysterious entity. There's no black or white diagnostic test. It could be low T3 as well. I've seen that mooted.

I really hope researchers get to the bottom of it. It's a miserable, disabling condition that can severely impact quality of life and if new research is being done hopefully new treatments can be discovered which will also benefit those with ME and Long Covid.

[MaggieSylvie in reply to Sparklingsunshine]

That all seems to bode well; find the cause: find the cure - hopefully. The Chinese believe there is a cure for everything. It's just that they haven't all been found yet.

[HowNowWhatNow in reply to Polly91]

Interested. What kind of practitioner was it who told you all this?

[Polly91 in reply to HowNowWhatNow]

She specialised in immune dysfunction and infections. Phd nutritionist.

[MaggieSylvie in reply to HowNowWhatNow]

Today's discussions, if you follow them, and a Chinese medicine practitioner.