Any idea if this 'normal'

[weirdhead]

Hi, i am a lady 60+ and don't have diabetes. My general health was fine until i had parathyroid surgery 3yrs ago. Since then my general'well being ' has taken a nose dive. I have had awful symptoms of anxiety/depression /confusion and generally feeling not great. I was given an old meter by a colleague and asked to test my sugars. I had some quite low ones ranging from 2.9 to 3.9 and on some days felt so ill i could barely eat, however,after a 'bad day' i noticed that the following day i felt better, so wondered if perhaps it was something i hadn't eaten (probably all i had eaten was a yoghurt, a banana and some soup ) but, didn't want to go down the route of not eating to feel o.k. A few weeks ago i collapsed, was taken to A+E and told them i had been having low blood glucose. My g.p wouldn't accept the readings, because the meter was outdated, i was referred to an endo on NHS , but appointments were 4/5months, so because i was feeling so unwell i paid to see one privately. He told my g.p to issue a new meter and asked for 2 separate fasting bloods. (which i knew would be fine because if i didn't eat i usually felt o.k ) Since i have had the new meter my lows are about 3.6,, which i have been tol is o.k, but i have been so careful about what i eat, but have had quite a few 10.s and a couple of 15's and on one occasion 21.4. I'm just lost, some days i don't feel too bad but on others i feel so unwell, the muddled head/depressive feelings are far worse than any 'physical' symptoms, i feel as though i've gone mad and haven't been able to work for for 6months. Sometimes the 'fatigue' strikes and i feel half dead. The strange thing is i know if i didn't eat 'normally' i would be o.k. I'm just confused all the time about what to eat, do, what tests to have etc, all i want is to feel normal again, but people /doctors just say, you don't have diabetes so just eat normally, however, the reading of 21.4 was after just having a fruit yoghurt, a glass of orange and a chocolate bicuit . Any suggestions PLEASE as ithink the g.p thinks i am crazy.

 

[Severe_Needle_phobia]

Hi @weirdhead
Warm welcome to the forum .
Hopefully one of the more experienced members should get back to you shortly .

 

[bulkbiker]

Paging @Brunneria and @Lamont D
My one question would be how long after eating were you testing?

 

[Arab Horse]

Sorry to read this. I am 75 in a couple of months and I am the opposite of you, even when my glucose is really high I feel fine, I never have lows. I am a skinny T2.

As you were fine before your parathyroid surgery it seems that has caused the problem. If food is the problem (unlike;y to be the complete problem) I would suggest cutting out the carbs and following a diet of fresh veg, meat and fish and cheese, i.e. a T2 diet and see what happens. I find yoghurt puts my glucose up (along with most things!) so don't often eat it.
Towever I do think you need to be referred to a specialist as it must be awful to feel like that; bad enough if you were in your 90s but 60 is still young.

Sorry, cat tramped on keyboard and I am not sure how to change the font!!!!

 

[ert]

Welcome. I hope you get to the bottom of these symptoms soon. Are you on any medication?

 

[Brunneria]

Hi and welcome @weirdhead

Sounds like you are really struggling - and quite understandably. Wildly fluctuating blood glucose is really hard on the body, and when it happens day after day, with no apparent explanation, it is very distressing. When I eventually got control of mine, it was a tremendous relief. I was surprised how much it had been affecting my mood, energy levels, sleep, stress levels...

Like @bulkbiker , I am wondering when you are taking your blood glucose readings?
And then I am wondering what you are eating? What you consider to be 'normal' food?

Some of us find it extremely helpful to test in a systematic way:
Before eating,
Then at a set time after eating, usually 2 hours (though you can test at 1, 2, and 3 hours, if that is giving useful info)
Then additional tests when we feel rough.

A lot depends on how many test strips you have available, and whether your doc will prescribe more.

Many of us (usually type 2 diabetics) don't get any testing equipment or test strips from our doctors, on the ground of cost, so we self fund. If your doc objects to giving you more, or enough strips, then we can suggest a few nicely economically priced suppliers - there is a lot of price variation, so it pays to shop wisely.

I would strongly suggest that you keep a food diary, and record your readings in it. Time, date, any notes on how you are feeling.
That way you will be able to spot patterns.
Sometimes a particular food will cause more problems than other foods.

What foods are causing the problems, and what foods do you consider to be 'eating normally'?

One other thing:
Readings in the 3s are quite normal for non diabetics but they usually don't feel rough when it happens. Peckish, maybe, but not rough.
However, it is extremely unlikely that 'normal' people have readings over 11mmol/l - not unheard of, but very unlikely.
For you to have several readings above that, especially hitting 20, is NOT normal.

PLEASE do not feel you are wasting your doc and consultant's time.
There is obviously something amiss, and it needs investigating.

There is a condition called Reactive Hypoglycaemia, which is associated with large blood glucose swings, both high and low. It isn't diabetes, although it is sometimes mistaken as such. It is often (usually?) controllable with dietary changes. I have it, so am speaking from experience.

We have a Reactive Hypoglycaemia section of the forum that you may find interesting to read, however, at this stage, I think you need a lot more info (food diary, blood test records, and investigoratory tests by your health care team) before anyone jumps to any conclusions.

Did I say welcome? Well you are. this forum is a great place for support.

 

[DCUKMod]

@weirdhead - I'm sorry you're having a tough time at the moment.

What sort of monitoring, and post operative interventions have you had since your parathyroid surgery? How is your thyroid health? Do you take any medications for either your thyroid or parathyroid?

 

[kitedoc]

Hello @weirdhead , and welcome. And despite your avatar name you are not mad, weird, nothing of the sort.
Firstly - is there a follow up appointment arranged with specialist you saw and who recommended a new meter and more testing? For discussing these bsl readings with that person sounds like the best way to proceed.
Secondly for a GP to ignore the bsl results you have obtained does make one wonder about negligence on his part
Thirdly given the parathyroid glands location and function one would expect some regukar monitoring of your thyroid gland, as queried by @DCUKMod , as well as of your calcium levels. Abnormal calcium levels or thyroid level could make people feel quite unwell at times.
Thirdly, knowing the timing of your blood testing is important as @bulkbiker is suggesting by his question but a level of 21, where there was no sticky glucose syrup or similar from say a glucose jelly bean on your finger before testing is in need of prompt assessment. There may be perhaps 2 other main explanations and having that sorted is very important. And some possibilities for the lowish blood sugar readings also.
Fourthly- If your GP has definitely disagreed with this need for assessment an opinion from another GP soon sounds best
BestvWishes for a prompt and thorough sorting out of your troubles.
Add: if you look at the Home page, and click on the 'Living with Diabetes', about halfway along the horizontal menu bar, then looking at the resultant headings and of blood sugar levels on far left, you will see charts about normal blood sugar levels for diabetics and non-diabetics and an idea of when, in relation to food intake, such tests are usually done.

 

[Lamont D]

If you have had parathyroid surgery, this will surely effect your hormonal response to your body, everything will be out of balance until you find yourself eating and doing things things that you and your body can tolerate.
There are a lot of hormones, and if they are still out of balance, then you will feel awful.
I would contact your specialist to see if this is usual after this long.
Have you got a second appointment with the private endocrinologist?
Because, you do need to persuade him to get tests done.

Something is not right, and you need to find out what!

Best wishes

 

[weirdhead]

Thankyou all for your replies, i have been testing just prior to a meal and then 2hrs later. I don't take any medication but the confusion / anxiety issues have been happening since the surgery and its really changed my life. I never considered blood sugars, just accepted it was a mental health problem (i never suffered prior to op ) but most of my readings are within normal range, but i think thats because my diet is quite good, low carb no junk foods anyway. Has anyone else had strange mental health symptoms ? I am really struggling, but everyone around me keeps saying blood sugars don't effect you in that way. My fasting 12hr tests came back normal and g.p says i should be fit to return to work , but, i seem to be becoming more anxious/confused and think the doctors think i'm just paranoid. I just don't know how to proceed really , is it worth mentioning the really high reading ? I have heard even people with no problems can have the odd high one and as i said previously i find it hard to correlate my blood sugars with how i feel as i feel pretty strange/out of it most of time now. I would like to know if anyone has had similar symptoms or do you think like the doctors they are unrelated ?

 

[weirdhead]

In response to some of the other replies, the thyroid and calcium tests all come back normal, i feel as though every test i have comes back normal and i would absolutely love it if i felt'normal' also, i have read a little on the reactive hypoglycemia but daren't suggest any more tests to my g.p however, just wishing it would all stop isn't working.

 

[Lamont D]

Thankyou all for your replies, i have been testing just prior to a meal and then 2hrs later. I don't take any medication but the confusion / anxiety issues have been happening since the surgery and its really changed my life. I never considered blood sugars, just accepted it was a mental health problem (i never suffered prior to op ) but most of my readings are within normal range, but i think thats because my diet is quite good, low carb no junk foods anyway. Has anyone else had strange mental health symptoms ? I am really struggling, but everyone around me keeps saying blood sugars don't effect you in that way. My fasting 12hr tests came back normal and g.p says i should be fit to return to work , but, i seem to be becoming more anxious/confused and think the doctors think i'm just paranoid. I just don't know how to proceed really , is it worth mentioning the really high reading ? I have heard even people with no problems can have the odd high one and as i said previously i find it hard to correlate my blood sugars with how i feel as i feel pretty strange/out of it most of time now. I would like to know if anyone has had similar symptoms or do you think like the doctors they are unrelated ?

One of my major symptoms before diagnosis was anxiety.
To say that mental and brain function is not impaired by blood sugar levels is totally wrong. Brain fog, forgetfulness, even depression can be a symptom of low blood sugar levels, definitely blood sugar levels that drop too quickly. High blood sugar levels can also have brain function symptoms.

I do believe that your doctor is treating your anxiety as a condition rather than the symptoms of a blood sugar related problem.
Continue with testing and recording. There will be a few surprises along the way, I didn't have a clue what potatoes did to my blood sugar levels.

Best wishes