Falling down hole of diagnosis

[Shallis]

A huge thank you for suggestions and help. This is the first time I have ever posted on any forum, and I am rather bowled over by the kind and thoughtful responses. This has been rather a long road for me, and I am now thoroughly guarded against premature 'over excitement' if i think I might have found the answer. And I have long ceased to rely on medical professionals in our poor, ragged NHS. Unless you have something text book easy to diagnose, it pretty well falls to us to direct our own dogged research, the community of caring, knowledgeable people as on this forum is just invaluable.

Responses have given me confidence that this is a possible cause of my condition and is well worth exploring. Lamont D's confirmation of shared symptoms is encouraging and a relief.

As the Freestyle Libre is expensive, it might be advisable to buy the cheapest meter I can, to check I have a problem first, then invest in it for detailed information if I do. I would welcome advise on cheap meters - is this a 'you get what you pay for' situation, where very cheap options are thoroughly unreliable? In which case, what is a safe 'entry point'? If that cost is close to the Freestyle Libre anyway, it might be better to just go for that. As CherryAA points out, really KNOWING what's going on is invaluable either way. Is the Freestyle Libre the only waty of REALLY knowing rather than just having some indication?

It seems testing with a glucose meter is all I need to do before seeing the doctor, then 'nicely' insisting on referrral to an informed specialist if my own test results are positive. From another part of the (hugely informative) forum I found this:

"If you believe you have a form of hypoglycaemia, and you need a bunch of tests to rule out other conditions, the only way forward is to get a referral from your GP. Your GP can find an endocrinologist, who has specialist knowledge in Hypoglycaemia.As it rare, then the tests you need are a hba1c to see if you have normal glucose levels. Unless your insulin resistance is high that distorts your test.Then a prolonged OGTT (oral glucose tolerance test) (5hours) which will show how quickly you spike, then if you hypo after more than two hours. During this test other blood tests should be done, including GAD and c-peptide. If that shows that there is a possibility of you having RH. Then the next test is probably a breakfast tolerance test (you are given bread, butter jam and a drink, then they monitor your blood glucose levels and take blood for tests for other conditions. The last tests are to eliminate insulinoma or pancreatitis or pancreatic cancer, which is a 72 hour prolonged fasting test in hospital."

That’s quite a lot of testing! Not sure NHS would do the last one as routine unless other strong indications cancer (or the rest) a possibility. I assume that the detailed results from the Freestyle Libre really would be reliable enough for my own diagnosis purposes? (Before confirmation by other tests). Enough to dive into the no carbohydrate diet and, with a fair wind, and at last knowing what I am dealing with, getting control.

 

[Bluetit1802]

Many of us here use the Codefree meter. This is because the replacement strips are the cheapest there are. You only need one meter but you need many strips. Some meters are given away free, but the reason being once they have "got you" you are obliged to buy their strips, which are often exorbitant. So do check the cost of strips first. The Codefree is a good little meter. All meters have to conform to the same accuracy standards before they can be marketed, and this is approximately plus or minus 15%.

The Codefree isn't available in pharmacies. You can buy one from the supplier here. https://homehealth-uk.com/product-category/blood-glucose/ or Amazon.
There are discount codes if you buy in bulk

5 packs 264086
10 packs 975833

 

[azure]

If I was you, I'd go for a cheap meter @Shallis not the Libre which is expensive and may not be necessary. With good luck, a few tests on a normal blood glucose meter will give you a good indication whether your symptoms are in any way related to blood sugar.

Some of the symptoms you report eg an internal shaking and nausea, aren't commonly related to hypoglycaemia, but are related to other conditions.

 

[Robbity]

This seems very expensive for a condition you may not have, it may give you good data but you can make your own if your vigilent. Buy a blood glucose monitor, lancets and strips to match the machine you buy. You can get them on line or at your local Boots or pharmacist. Buy a note book and test your own blood sugars when you wake, before each meal and two hours after and also at bed time. At the same time keep a record alongside of what you are eating and when. Lay out all this information clearly for each day in the note book. It takes more effort but should cost you less than £50. Then take your note book with you when you see the GP.
If its an on going problem you can always make an appointment with GP as you leave the last one, just a thought.
Good luck

I tend to agree with @CherryAA - the Libre may well be expensive but it's certainly the best "diagnostic" tool to give us a continuous 24 hour picture of what exactly is going on with our glucose levels. With test strips we can only do spot checks, and unless we have some idea of what may be happening, it's quite possible to miss testing at an appropriate/critical time to obtain possibly vital data.

If you'd like to take a look at some of @Brunneria's posts particularly her Libre thread(s), I believe you'll find that she's gathered much more in depth information about her reactive hypoglycaemia from her Libre than she had from several years worth of test strip data.

Robbity

 

[Lamont D]

A huge thank you for suggestions and help. This is the first time I have ever posted on any forum, and I am rather bowled over by the kind and thoughtful responses. This has been rather a long road for me, and I am now thoroughly guarded against premature 'over excitement' if i think I might have found the answer. And I have long ceased to rely on medical professionals in our poor, ragged NHS. Unless you have something text book easy to diagnose, it pretty well falls to us to direct our own dogged research, the community of caring, knowledgeable people as on this forum is just invaluable.

Responses have given me confidence that this is a possible cause of my condition and is well worth exploring. Lamont D's confirmation of shared symptoms is encouraging and a relief.

As the Freestyle Libre is expensive, it might be advisable to buy the cheapest meter I can, to check I have a problem first, then invest in it for detailed information if I do. I would welcome advise on cheap meters - is this a 'you get what you pay for' situation, where very cheap options are thoroughly unreliable? In which case, what is a safe 'entry point'? If that cost is close to the Freestyle Libre anyway, it might be better to just go for that. As CherryAA points out, really KNOWING what's going on is invaluable either way. Is the Freestyle Libre the only waty of REALLY knowing rather than just having some indication?

It seems testing with a glucose meter is all I need to do before seeing the doctor, then 'nicely' insisting on referrral to an informed specialist if my own test results are positive. From another part of the (hugely informative) forum I found this:

"If you believe you have a form of hypoglycaemia, and you need a bunch of tests to rule out other conditions, the only way forward is to get a referral from your GP. Your GP can find an endocrinologist, who has specialist knowledge in Hypoglycaemia.As it rare, then the tests you need are a hba1c to see if you have normal glucose levels. Unless your insulin resistance is high that distorts your test.Then a prolonged OGTT (oral glucose tolerance test) (5hours) which will show how quickly you spike, then if you hypo after more than two hours. During this test other blood tests should be done, including GAD and c-peptide. If that shows that there is a possibility of you having RH. Then the next test is probably a breakfast tolerance test (you are given bread, butter jam and a drink, then they monitor your blood glucose levels and take blood for tests for other conditions. The last tests are to eliminate insulinoma or pancreatitis or pancreatic cancer, which is a 72 hour prolonged fasting test in hospital."

That’s quite a lot of testing! Not sure NHS would do the last one as routine unless other strong indications cancer (or the rest) a possibility. I assume that the detailed results from the Freestyle Libre really would be reliable enough for my own diagnosis purposes? (Before confirmation by other tests). Enough to dive into the no carbohydrate diet and, with a fair wind, and at last knowing what I am dealing with, getting control.

Those tests that I posted are a process of elimination tests. The need to discount other more serious conditions was essential.
As I have a very rare type of hypoglycaemia, it was prudent and correct procedure for a correct diagnosis, I was also used as a guinea pig in many respects and tests, I was lucky in finding my endocrinologist and had to go through the mill to get a referral and proper care and treatment.
Testing is so crucial and I had a fight to get my testing strips on prescription because of not having diabetes. Keep fighting.

 

[Shallis]

Tried my own wee experiment before any meters: took several ( a lot of) teaspoons of glucose powder. That checked shaking, but as shaking randomly lessens not a controlled experiment. Still felt weird, but perhaps differently weird. Not so good at telling. Then I time measured return of shaking. Slight, just over half an hour later; moderate, just over an hour later; full blown (and hugely unpleasant) hypo, just over one and a half hours later. But then I had eaten PURE GLUCOSE, and possibly that would give ANYONE a massive hypo reaction?! 'Binged' more glucose: no shaking, but pretty odd. Thoroughly confused! As I'm sure many on this forum want to shout, 'I AM NOT A DOCTOR!!!' My comfort zone is book history, for goodness sake. Ask me anything about fifteenth century printing! A floundering amateur here. We should all be pushing for a health service that really serves us.

Family urging me to just go for Libre Freestyle on grounds we need to just know why I am so ill, and negative progress is still progress. False economy stalling for time. As far as I can deduce from here, a positive result on 'ordinery' meter would show problem, but negative could have just missed it, so ambiguous result. But then checked review section on this site and Libre freestyle gets a lot of negative criticism too. So not sure I would be any wiser. Confused.

Family want me to 'go private' to find out what's wrong, as illness so incapacitating and long term (and NHS so slow and so not fit for purpose), that has to be worth it economically too. But they don't realise that unless I have pretty well narrowed to an at least partial diagnosis myself, it would be quite prohibitevely expensive exploring multiple possibilities.

Checked availability of testing on internet. Would a private HbA1c definitely show a problem or definitely rule it out?

Or GGT?

Or anything, really?

HOW does one find a sympathetic, hypoglycaemia literate endocrinologist? Googling does not throw up a specialist in UK.

Has anyone come across Dr Myhill? http://www.drmyhill.co.uk/wiki/Hypoglycaemia_-_the_full_story She suggests a short chain fatty acid test. Any thoughts?

The work of Dr Patricia Lane on fats looks encouraging.

I had given up on diagnosis ('hysteria', anyone?), thinking I don't want a name, I just want to get well! But realise they are connected, and so plodding on again.

Lamont D, you were very blessed by such rigorous testing on NHS, but realise after a very long, difficult and frustrating road.

 

[azure]

If you want to go private and can afford to, why don't you see if you can simply pay for a full whack of blood tests, etc?

You say you have had some conditions already ruled out - what were they?

With regard to your experience above, what made you think it was a hypo? Was this different than previously because you'd earlier said that eating did not make a difference?

What other possibilities are you investigating other than blood sugar related?

 

[catapillar]

Slight, just over half an hour later; moderate, just over an hour later; full blown (and hugely unpleasant) hypo, just over one and a half hours later.

What makes you think this was a hypo, did you test you blood sugar while you were having symptoms?

Even if you get a libre, you would need a blood sugar monitor to set it up and calibrate it and then to verify any unusual blood sugar readings from the libre. I suggest you just get a blood sugar monitor first and if that suggests you do have an issue with hypoglycaemia only then consider a libre. If you don't have a blood sugar issue a libre is simply going to be a waste of money.

A hba1c might not show anything unusual for you. It shows your average blood sugar for the last 3 months. So you could have a normal average even if that is achieved by dramatic peaks and troughs.

I think @Lamont D is probably best placed to advise on investigations to rule in/out hypoglycaemia and then investigations on what kind of hypoglycaemia.

But really the first step is to establish whether you actually are having any hypoglycaemia at all by testing when your having symptoms.

 

[Shallis]

Thanks, Catapillar. Suspected I might need regular meter as well, so that confirms I should start with that and hope it picks up something if there is something to pick up.

Useful to know hba1c not likely to be helpful.

I have had acute hypo attacks all my life so there is no missing one, testing or not (sudden onset and very intense, clammy/sweating, shaking, faint, weakness, the very particular sucking 'weird' feeling, visual disturbance and feeling I will black out unless I eat AT ONCE). I did not regard that as any big deal, and was skilled at avoiding them generally, and swift application of the craved food corrected it. The only question for me is whether this new chronic condition is related. Because of symptom overlap and a test result that flagged up pre-diabetes. And it's got to be something.

 

[Lamont D]

Tried my own wee experiment before any meters: took several ( a lot of) teaspoons of glucose powder. That checked shaking, but as shaking randomly lessens not a controlled experiment. Still felt weird, but perhaps differently weird. Not so good at telling. Then I time measured return of shaking. Slight, just over half an hour later; moderate, just over an hour later; full blown (and hugely unpleasant) hypo, just over one and a half hours later. But then I had eaten PURE GLUCOSE, and possibly that would give ANYONE a massive hypo reaction?! 'Binged' more glucose: no shaking, but pretty odd. Thoroughly confused! As I'm sure many on this forum want to shout, 'I AM NOT A DOCTOR!!!' My comfort zone is book history, for goodness sake. Ask me anything about fifteenth century printing! A floundering amateur here. We should all be pushing for a health service that really serves us.

Family urging me to just go for Libre Freestyle on grounds we need to just know why I am so ill, and negative progress is still progress. False economy stalling for time. As far as I can deduce from here, a positive result on 'ordinery' meter would show problem, but negative could have just missed it, so ambiguous result. But then checked review section on this site and Libre freestyle gets a lot of negative criticism too. So not sure I would be any wiser. Confused.

Family want me to 'go private' to find out what's wrong, as illness so incapacitating and long term (and NHS so slow and so not fit for purpose), that has to be worth it economically too. But they don't realise that unless I have pretty well narrowed to an at least partial diagnosis myself, it would be quite prohibitevely expensive exploring multiple possibilities.

Checked availability of testing on internet. Would a private HbA1c definitely show a problem or definitely rule it out?

Or GGT?

Or anything, really?

HOW does one find a sympathetic, hypoglycaemia literate endocrinologist? Googling does not throw up a specialist in UK.

Has anyone come across Dr Myhill? http://www.drmyhill.co.uk/wiki/Hypoglycaemia_-_the_full_story She suggests a short chain fatty acid test. Any thoughts?

The work of Dr Patricia Lane on fats looks encouraging.

I had given up on diagnosis ('hysteria', anyone?), thinking I don't want a name, I just want to get well! But realise they are connected, and so plodding on again.

Lamont D, you were very blessed by such rigorous testing on NHS, but realise after a very long, difficult and frustrating road.

The problem is of course is your frustration in getting the help you really need!
Did I pm you with the endocrinologist that I go to?

The problem with going private unless you have knowledge of the doctor is as in rare cases of Hypoglycaemia, he/she might not have a clue to your symptoms and then because it's private, the necessary tests would cost a fortune.

A hba1c test if you Hypoglycaemia would show normal readings.
A prolonged OGTT is the first step!

The simple test only showed that your body does not like glucose and the symptoms clearly show the reaction to have instant spike!
You probably had a very high hyper, which also gives shaking and other similar symptoms as you described because that is typical of fluctuating blood glucose levels.
Pure glucose probably triggered what is known as gastric dumping, which is the initial insulin response drowning the surge in glucose. Look up gastric dumping on Wikipedia.
The excess insulin would rapidly swamp the glucose, meaning that the shaking symptoms returned because of rapid dropping of your blood glucose levels.
This would eventually lead to a hypo, unless you eat or drink something to offset the hypo.
Beware of the rebound effect from the hypo if you correct it with too much glucose.
Take it easy with low carb until you feel better, then have a low carb meal.

I may have mentioned before, that your GP should be able to get the information to get a specialist who specialises in Hypoglycaemia.

I have never used a libre freestyle, but it would help you solve what the hell is going on. @Brunneria has recommended it and she has discovered lots of information.

I do know how you feel, it's awful and it was a long road.
But if you can follow what we do and get yourself in normal range of blood glucose levels, eat to your meter, discover the foods that your body doesn't like, you will be half way there. The rest is not being tempted to eat the baddies!

You are in that period of finding out that something is wrong and there is no one medically aware of what is happening to you!
Hope that helps a little!

 

[Shallis]

That helps A LOT, Lamont D. Thank you. I would LOVE to know who your endocrinologist is, please DO PM me.

I got a bit bogged down on reviews of glucose meters - all of which seem a bit dodgy, so just oredered the Codefree as recommended here. On grounds of what is the point of asking for advise if I ignore it! I will run simple testing after overnight fast, testing before breakfast (of 'pure' carbohydrate - a bagel with no butter seems good from google research- not what I normally eat!), then at one, two, and three hours later, then when symptoms generally go AWOL late in the day). That's five tests. Leaving enough strips and lancets to repeat on second day. If results seem to indicate out of whack then I will order the Libre and continuous test for two weeks.

That is far less expensive than private consultation would be. As you point out, going to a private endocrinogist would not be that helpful unless hypoglyceamic aware person anyway. And I am very mindful that 'going private' with a 'scatter gun' approach to chasing diagnosis would get ruinously expensive very fast - and may still get me nowhere.

I have been denied referral to an endocrinologist as there is 'no reason to refer you' as my surgery thyroid test is normal and, apart from the glucose test, is all I have had. The results of other routine blood tests are normal. I have seen two neurologists (changed GP practice hence a re referaal) who told me after a short interview consultation that it was not neurology related. One told me after about two minutes (and without any reference to symptoms of either me or condition suggested!): 'I am not a psychiatrist but you have agitated depression' (a bit upsetting actually and insulting, and frustrating after waiting for gold-dust appointment for about eight months). The second consultant (after another wait of many months even to get on list to be given an appointment, but then lucky late cancellation appointment before I made that list) was a far more sympathetic person but diagnosed me after the short consultation with conversion disorder (hysteria, basically). And referred me for CBT. Which I agreed to. Do not cross the medical profession - and never show ANY frustration and certainly, NOTHING that could be construed as anger. Be UNFAILINGLY CALM! I did, on my request, get referral to a balance clinic (to check for chronic labyrinitus which fits a little bit). Huge waiting list. Do not expect that to come up for many, many months. As far as NHS is concerned at moment, that is that.

I have, along the way, been erroneously been diagnosed with Lyme disease, glandular fever and CFS (when I objected I had no fatigue, and the clue is in the name, the consultant told me I probably did but just didn't know it (?!).

The false route of neurology has somewhat blocked me from any other referrals. This all might turn out to be a red herring but I need to know. And it falls to me.

Should my own testing (with Codefree then, Libre meters) look dubious then I will push for the prolonged OGTT test. Which probably needs to be conducted in department of endocrinology? Which will take months and months and months. THAT is the point to go private. Because I am desperate rather than rich!

Yes, I am still in the wilderness. Stories like yours, Lamont D give me courage to press on not to just accept throughly disabling condition.

 

[Lamont D]

Wow!
To be calm after all that frustration is to be saint like!
But I've been there and have had similar experiences with doctors and specialists!
I'll pm you later, wether that will get you the necessary tests!
I believe, though I forget the poster who was given neurological tests and like yourself came back normal. And more tests to try and solve the list of symptoms you have.
The frequency of people who join the forum who are frustrated by the lack of knowledge within our medical practitioners is alarming. Most GPs have no idea on metabolic conditions!
Do your tests and let us know the results.
Best wishes.

 

[seadragon]

It costs less than £30 to get 5 pots of testing strips (using the discount codes). That would give you enough strips to perform BG test on rising and both before and at 1 and 2 hours after eating anything as well as at any time you get unusual symptoms. I wouldn't think the results for just 10 tests would be enough to give you much info. Also don't forget to write down EVERYTHING you eat and drink along with the test results. Also I personally reuse my lancets several times and have had no problems with this at all.

BG can give you all sorts of symptoms that are not in the text books. When I was younger I regularly used to feel dizzy and pass out on returning home from school. Never occurred to me then it might be blood sugar related but now I think it may well have been. Also used to have bad reactions to wholewheat flours which would bring me out in a sweat and I don't think it was gluten related as normal flour was OK (in those days). I also had an unexplained cough after eating, after every meal I would have a coughing spasm. I couldn't understand it as it didn't seem related to anything. Once I went very low carb it simply vanished but if I stray and eat a carby meal it comes back. A few years back shortly before testing for type 2 I was getting visual migraines where the world would go dark and then look like an old photo negative where dark was light and light was dark. This is another thing that has vanished since going low carb.

Good luck with finding out what is wrong and getting help.

 

[Shallis]

Thanks for that. Just ordered more strips and will keep careful very careful log of everything. Did wonder about reuse of lancets, if retesting so quickly. That confirms OK. Will get alcohol or meths to clean finger every time to ensure very clean and no sugar traces too.

I have always suffered from occasional visual migraines too (no headache, thank goodness). Unpleasant things though. Mine are classic, part of visual field dropping out with triangular/zig zaggy vibrating disturbance, Yours sound very Fox Talbot! Would be interesting if visual migraine connected to blood sugar levels too.

I will update forum with results after very kind replies to my post.

I know my medical experiences are sadly far from unique. The sheer, collosal waste of money in the NHS through such gross inefficiency and ignorance is a tragedy in itself. It could all be so different!

 

[Lamont D]

Thanks for that. Just ordered more strips and will keep careful very careful log of everything. Did wonder about reuse of lancets, if retesting so quickly. That confirms OK. Will get alcohol or meths to clean finger every time to ensure very clean and no sugar traces too.

I have always suffered from occasional visual migraines too (no headache, thank goodness). Unpleasant things though. Mine are classic, part of visual field dropping out with triangular/zig zaggy vibrating disturbance, Yours sound very Fox Talbot! Would be interesting if visual migraine connected to blood sugar levels too.

I will update forum with results after very kind replies to my post.

I know my medical experiences are sadly far from unique. The sheer, collosal waste of money in the NHS through such gross inefficiency and ignorance is a tragedy in itself. It could all be so different!

At least a couple of decades before diagnosis, I had a lot of migraines as you describe, triggered by low level strip lighting, that's what I had been told!
The frequency of these migraines always happened during a shift that I can recollect always had something carb laden for lunch, mostly chips with something.
I could never imagine that food was responsible for these migraines!
I now have my doubts!
I believe my body was telling me for years to not put certain foods inside me, but did I listen?
Not likely!
Did I care?
Not really!

I do now!

 

[azure]

Any update @Shallis ?