Doctors: Hello.. I am about to have a... - Gluten Free Guerr...

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Magicmarker28 profile image
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Hello..

I am about to have a phone call from the Doctor this afternoon to discuss 'symptoms' as in extreme tiredness on a day to day basis, esp after exercise, i liken it to being really hungover.

Each day is a bit of a struggle, and feel life is sort of passing me by.

I went to the doctors on a number of occasions about a year ago, and had lots of tests to try and understand why i feel this way. I was passed from Doctor to Doctor with no real consistency in terms of discussion, diagnosis ranged from Depressed (including asking if intended to harm myself or others, I am generally happy go lucky, but obviously being this all of the time does take its toll), to questionnaires about my state of mind.

Ultimately i am wanting to put this to bed once and for all, i don't think its normal to be this way (i am 41yrs old, and in reasonably fit, i like to run marathons once in a while, well i used too, and have two young boys). At the moment, i struggle to get out of bed each day and by the end of the working day am flat out exhausted.

I wanted to ask if anyone else has similar issues, what they do about it, is there alternate options?

I stopped going to the doctor 12 months ago, because i was told i needed to speak to one Doctor, but each morning for 3 weeks i tried to phone her but she was never available. Bit frustrating.

So i chose to try and manage myself, food intake, fluids, sleep all key things in relation to managing how i feel.

But it in all honesty (i don't want to come across as a wet flannel) it isn't working, i just feel something is missing..

Any suggestions, comments would be gratefully appreciated.

Mark

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Magicmarker28 profile image
Magicmarker28
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MaryF profile image
MaryF

Check your Thyroid, the standard NHS TSH tests are very very unreliable and leave a lot of people feeling this way. MaryF

Hi Mark, (I am assuming you've not been diagnosed with anything that would cause this tiredness.)

Sounds like you've had a rough year (or two?) Tiredness can be a symptom of so much. I think my approach would be to list the likely suspects (perhaps with the help of a Dr.) then prioritse the list and try and eliminate them one by one.

For example if you are an undiagnosed coeliac (wide spectrum of symptoms from zero to extreme, including tiredness) then stopping gluten for a 'while' may result in an improvement.

You may also be allergic to something. Have you had any blood tests? Maybe low B12 and/or folic acid? Thyroid issues?

I would push the GP to lead a process of ilimination as this is the foundation of how they go about diagnosis.

I'd also force myself to prresent to the Dr. a positive front perhaps even saying life, apart from this, is great and you're not depressed etc.

Best of luck with the call today.

Magicmarker28 profile image
Magicmarker28 in reply to SilverDreamMachine

Sorry, i am Ceoliac confirmed and was coming up 2.5 yrs ago, before that it was unbearable!! Yes totally get your last sentence i think that is important to not come across that way. I don't want to be negative at all, i just would like to see resolution to the problem, or at least progress to understand more about it. I have read much about foods, groups, the disease other symptoms associated with it, but can't make any link as yet to what it is or why i am this way. I feel certain its not just an age thing, i used to race out of bed in the mornings and be very energetic...!

Regalbirdy profile image
Regalbirdy

Hi Magicmarker28

Can I say you have my sympathies - I know exactly what you're talking about! I've been known to describe it as being like that 80's Duracell bunny advert - because so often I feel like one of the pink bunnies inferior friends (see YouTube if you don't know what I'm talking about!). Everybody else is still going strong and I'm running on my last bits of energy.

Btw, Coeliac disease can and does cause depression. This in itself can be a source of tiredness and fatigue. However speaking for myself, I've found that most of my underlying symptoms have been linked to vitamin and mineral deficiencies, as well as mild adrenal issues. Being a coeliac means that some nutrients just don't get absorbed in adequate amounts due to having a damaged gut. I've found that this is particularly so for quite awhile following diagnosis (almost 2 years on, I feel that I still haven't quite got to the bottom of all the issues that have been caused by being a coeliac).

When you're talking to the doctor later, I would encourage you to get the exact numbers of any blood test results mentioned (and write them down). Being told that a test is 'normal' isn't a very useful definition in my book! (it doesn't really tell you what exactly is going on and allow you to make your own judgement). I've fell foul of the word 'normal' several times and not got the treatment I've needed without having to challenge the original outcome. Sadly it's taught me to be suspicious.

Again going on personal experience, I would be discussing with the GP the following list:

1) Iron levels - are you ferrous anaemic;

2) folate levels - are you folate anaemic;

3) B12 levels - are you B12 anaemic;

4) Vitamin D levels - this needs to be at least 30+ (and above 75 is desirable/better);

5) Cortisol levels - are your adrenals functioning correctly - because this can be a source of tiredness and fatigue.

6) have they checked you for thyroid issues - remember to ask about autoimmune thyroid disorders such as Hashimoto's.

7) Other mineral imbalances such as selenium and magnesium. As with the other vitamins and minerals, sometimes there can be a malabsorption and deficiency problem.

There might not be a single quick fix answer, because it might be a combination of several things. However it is worth pursuing and being a little tenacious if necessary; because eventually you do start to feel better.

Good luck!

Btw, I've found that eating Dairy and Soya both cause me fatigue issues as well as having the vitamin imbalances. They were just other pieces in the jigsaw puzzle.

Magicmarker28 profile image
Magicmarker28 in reply to Regalbirdy

thank you, thats such a great answer...

Hi Magicmarker, Some very good advice above and I agree 100% about having a blood test and finding out what your iron, vitamin and mineral levels are as tiredness is a classic symptom of anaemia.

I would ask to be referred to your gastro because they have seen it all before and are aware of all the associated things that seem to affect many coeliac, like thyroid issues, lupus, pernicious anaemia.

As for being a wet flannel don't give your self a hard time you're amongst fellow sufferers on here and we have all been through the hoops in one way or another. So you're to tell yourself that 'I'm a coeliac and I'm alright'

Regalbirdy said:

''(almost 2 years on, I feel that I still haven't quite got to the bottom of all the issues that have been caused by being a coeliac).''

well I bet if Regalbirdy made a post saying this many others would echo her feelings. There were some recently interesting articles on here about CD and one specialist said that CD research and knowledge was at it's infancy and was like the 6 blind men and the elephant, where each one feels a different part of it's body, the trunk, tusk, leg the underside etc and they were all arguing about what an elephant was really like and a wise man came along and said you're all right. And this is the big problem for coeliac because they focus on collapsed villi when there is more to having CD than collapsed villi so whether some foods have proteins that can cross our blood brain barrier is over looked as the effect having CD has on the rest of our bodies. I reckon that I've got a trigger happy immune system me.

I also agree with SilverDreamMachine about coming over positively with the Dr's except I don't have to pretend as I'm naturally cheerful and upbeat but I'm probably a bit late for your phone call today.

So good luck and I hope that you find out what it is and feel better soon. And please let us know the outcome as many others will relate to your question.

Ps one diagnosis, if you're a diagnosed ceoliac then your spell checker isn't working LOL.

Marz profile image
Marz

When asking for thyroid testing do not have just the TSH - you will also need the FT4 and FT3. Thyroid anti-bodies are Anti-TPO and Anti-Tg. These need to be tested to rule out auto-immune Thyroiditis - which is the most common thyroid condition in the developed world.... Just having the TSH test tells only part of the story....

Important tests are Ferritin - Iron - Folate - B12 - VitD - and again the Doc may well say everything is normal - when they mean in range. They all need to be towards the TOP of the range and Ferritin around 80.

b12deficiency.info/signs-an...

vitamindcouncil.org Click onto Health Conditions at the Top of the page and be amazed :-) They are now linking Low VitD to Alzheimers - new research....

Always obtain copies of all blood tests with their ranges so you can monitor your own progress. This is your legal right. Maybe ask for the ones you have had done over the last few years and check them out yourself. There are websites that help you understand the letters on the tests. eg MCV Mean Corpuscle Volume and things like that !

Am afraid in this day and age it is important for us to take control of our health and to keep on top with information...

Hope the conversation went well with your Doc.... now what next ?

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