Finally Got the Answers: At last!!! I'm not mad... - Thyroid UK

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Finally Got the Answers

Kiki1st profile image
Kiki1st
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At last!!! I'm not mad!!! Pushed for all the blood tests under the sun after several years of pain etc etc etc..... Nobody listened as I was solely judged on my "mental health"!!😑 however after hours of research and direction from the forum, the results are in....... Major deficiencency in Vitamin D, Major deficiencency in Zinc, Major deficiencency in Progesterone.....It all makes sense now after aching bones, fatigue, MAJOR weight gain etc etc etc. After being on psychotic drugs in large doses for a few years and after complaining all the time with concern about my weight and physical health nobody listened!!!!!! I have now been diagnosed with metabolic syndrome and my hormones and blood glucose are now "messed up" and that's putting it nicely. I have now been referred to see an Endocrinologist to try and repair the damage as nobody looked at my past medical records to see that I had and have PCOS!!! Not a good combination with the drugs which have been forced down me.

Feeling absolutely amazing now, drugs been stopped, diet changed-no gluten at all, losing weight yay!!! And taking required Vitamins, onwards and upwards. Just like to say a big THANK YOU to those of you who pointed me in the right direction 😊

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Kiki1st
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Delighted for you! Although your experience of the NHS seems all too common and troubles me a lot. X

Kiki1st profile image
Kiki1st in reply to

Yes definitely!!! Haven't loses my marbles and certainly won't be dictated to or throbbed off!! It's absolutely discusting how a couple of hours on the internet reading consultants views etc can support you in coming up with your "OWN" diagnosis. We all know our own bodies and listen to them shame "professionals" don't!! I'm pleased anyway and ready to move forward, we all need to realise and consider Mental Health isn't the FULL story and doctors actually need to listen to their patients. I just think now of how many women especially are sectioned for major psychotic episodes when actually it could be hormones/time of the month/PCOS/Vitamin deficiencies etc etc, we are all human after all. Much love to all 😊

Pastille profile image
Pastille in reply to Kiki1st

Indeed. Wonder why the doctors never ever seem to have thyroid issues though. Ive never heard of one yet

helvella profile image
helvellaAdministratorThyroid UK in reply to Pastille

What about Dr Peatfield and Dr Lowe?

And I met one - who was most obviously still suffering muscle issues.

Pastille profile image
Pastille in reply to helvella

Oh well now I have then. I will have to read about those I wasn't aware, thanks

humanbean profile image
humanbean

Very pleased for you and glad you have found a doctor who is interested. You'll have to let us know what your actual results are, and what supplements have been prescribed or recommended by the doctor.

Just to give you an example of the problems that occur - people who are vitamin D deficient may end up being prescribed vitamin D2 - WRONG! it should be vitamin D3.

Also, doctors love prescribing 800 iU vitamin D per day which won't raise levels for anyone before the end of the current millennium it's so low, or they prescribe some outlandish amount to be taken once a week or once a month.

Most people prefer taking say, 5000 - 10000 iU per day, which is fine for the majority of seriously deficient people. Be aware that some people don't tolerate vitamin D supplementation, but I think the problem is rare.

Anyway, good luck, and hope you start feeling better soon. :)

Kiki1st profile image
Kiki1st

Ah thank you, been prescribed Vitamin D3 and Zinc don't think my GP wants to mess up any further. "Poisonous" psychotic drugs been stopped, I've requested another after much research at small dose in MY own time to raise levels if needed (just listening to my OWN body). Will now await Endocrinologist's input and will make decisions from there. Will also try and find a way to support others who maybe encountering same problems ☺️

Kiki1st profile image
Kiki1st in reply to Kiki1st

Prescribed 1000 iu per day D3 and 500 zinc at the moment.

humanbean profile image
humanbean in reply to Kiki1st

1000 iU of vitamin D3 per day won't be nearly enough if you are severely deficient. I took that amount for 6 months and my levels actually dropped.

Go onto Amazon, read the reviews, and buy yourself some 10,000 iU supplements. Vitamin D3 is one of the less expensive supplements out there. Re-test in 2 months. Vitamin D3 is a fat-soluble vitamin, and it should be taken with your fattiest meal of the day.

Another effect of supplementing with D3 is it raises your calcium levels. You want that calcium to end up in your bones and teeth, not in your heart or brain. The way to help that process along is by taking vitamin K2 with your vitamin D3.

I don't know anything about supplementing zinc, sorry.

Beverleyb profile image
Beverleyb in reply to humanbean

Thanks humanbean, Reading your reply to Kiki1st, I didn't realise about taking Vitamin K2 with Vitamin D3. I am about to have blood tests for vitamin levels, I shall take note if my levels are under. I have found some D3 GP prescribed last year they are 800 iu, i shall increase dose if levels are under. Thank you.

Numberone1 profile image
Numberone1

What element of this are you saying caused you weight gain and now to be losing it. I have all sorts of problems with my thyroid levels and absolutely cannot lose weight even on a very reduced calorie diet.

Im glad you feel better. What can they do for metabolic sydrome?

x

in reply to Numberone1

Numberone, I'm like you. I live on a very reduced food intake but still the weight won't go., it worries my husband how little I consume. I have food intolerances and allergies which doesn't help. I saw a nutritionist at the local hospital who reckons I don't eat enough, yet still I'm fat. It's one of those mysteries of life with this illness, well it is to me . I hope you find a solution and if I do I'll let you know. I hate being blubbery like this and having upper arms like legs of lamb! X

Tessica profile image
Tessica in reply to

Hi Mabsie,

I loved your comment about upper arms like legs of lamb. That is exactly how I would describe mine. Despite eating healthily and keeping to 1300 calls a day for weeks and weeks I cannot lose weight. Hypo for 20 years but sometimes going hyper. Only ever been given Levo T4 medication. I don,t carry weight on legs just arms and waist which is 38 inches. This is worrying for heart disease. I certainly cannot pinch any skin on my upper arms which I understand is 'mucin' (do others have this problem?). And common in hypo sufferers. I am about 1.5 stone overweight but cannot shift. I feel so exhausted all the time, low basal temp and low pulse rate that I feel my metabolism has died.

in reply to Tessica

My arms embarrass me especially trying to buy clothes, having bp taken as they have to delve into drawer to find a larger size etc etc.

I'm on t3 only due to allergy to thyroxine. Like you Tessica I swing between hypo to hyper, it's a fine lin. I have no idea what 'mucin' is? My temp. was always low as a child, makes me wonder if I needed testing then. I also swing between low pulse and tachycardia. You can click and see an earlier post I made regarding this.

Well, I wish you the weight loss you'd like. XX

Kiki1st profile image
Kiki1st in reply to Numberone1

Hi Numberone1 thank you for your comment 😊 don't know whether you've read my previous posts, but I suffered a major breakdown just over 5 years ago. Thus I became under the care of my community mental health team. They first started me on anti depressants, anxiety meds and sleeping meds. Now this is where it all started, may I add no one through my care even mentioned the SIDE EFFECTS or DANGERS the meds could have on me. Where I say "dangers", I mean if you already have a condition or illness the implications of mixing drugs with any other underlying health problems. Nobody mentioned a thing!!! Anyway after about a year of already trying a handful of anti depressants as nothing seemed to work they then put me on huge doses of the mother of all mother weight gainers quetiapine, it's a mood stabiliser and also works as a tranquilizer to shut people up...... sorry I meant "sedative" πŸ˜‰. This I now realise was the start of a very unhappy marriage shall we say. Weight started to pile on and so did the physical symptoms of arthritic problems, food consumption ( and I mean going from one extreme to the other) headaches,fatigue etc etc etc. Throughout the years whilst having my routine appointments with my psychartrist(s) and support worker(s) nobody investigated my symptoms or adverse side affects they just kept treating the symptoms with more drugs upon more drugs and NOT investigating the underlying illness. Then I was diagnosed with bipolar disorder 18 months ago and yet another explosion in my body I was prescribed Depakote, this is where I think my body just literally started to pack up. I was in my GP's surgery so often I was even considering moving in ha! I was referred to the Rheumatologist and Neurologist and was slapped with the diagnosis of Fibromyalgia, more drugs prescribed to help with pain and discharged bye bye......by this time my blood pressure was starting to soar and I honestly felt like my body was literally dying on top of the physiological effects of nobody listening. Well I had enough!!!! I started doing my own research and listened to and read posts on the forums. It all started to come together, reading about PCOS and the effects it can have with psychotic meds, foods containing gluten, hormone imbalances (which can be caused from meds themselves). I can't believe that these "professionals" between them all:

1. Never consulted my medical records

2. Didn't test for Vitamin Deficiencies

........deeeerrrr

And how many years of study does it take to become a doctor?????????!??

Anyway many meds can play havoc with your metabolism and give you allergies but they don't tell you!! As well as pushing as much meds through the surgeries to get money...,.oh yes, but we won't go there today.

So in the end I DEMANDED all the blood tests which I had researched online, equipped also with pages and pages of medical reference's which I had acquired online. I knew what had happened to me I just wanted to see the results to confirm all along that they had screwed up and have been giving me the incorrect medication for my mental health which was like feeding me poison against my PCOS for ALL these years, leading to my metabolism being screwed hence weight gain and a very low deficiencency in Vitamins and a massive hormone imbalance. I'm no expert and I do have so much respect for our Doctors and Nurses but and I say a big BUT "we" the patient are not hypochondriac's or mentally impaired or niave of our own bodies, my frustration lies in repeating the same sentence over and over again "my body just doesn't seem well, there's something seriously wrong please can you help"............

I used to weigh just under 9 stone, dress size 8/10 always had been i'm 5ft 4in......I now weigh 14 stone dress size 18/20 which brought with it high blood pressure, food allergies, joint and muscle stress etc etc. This wasn't from eating 10 bags of crisps, 2 plates of chips, 5 lbs of sweets, 4 bottles of fizzy etc etc etc on a daily routine, which my health professionals believed I was doing after all I had the stigma of "mental illness" attached so I must be pigging out ( and please that is no disrespect to anyone and I mean that!!! ❀️) No it was my body being destroyed by the drugs and the adverse effects it was having on me physically and both mentally. Please please don't starve your body, it needs feeding to survive, again I'm NO medical expert but I would stress to anyone get a full test of your bloods especially hormones, glucose, cholesterol, RBC and Vitamin deficiencies. Eat plenty and plenty and then more of fruit and veg, pure virgin coconut oil and coconut water, drink drink & drink WATER. Lower or cut out gluten (they are adding and continue to add so much rubbish to processed foods) our bodies can't handle it!!! hence food allergies cropping up left right and center. Look at the G.I diet as well, eating healthy and not starving yourself with all these other fad diets, walk to the shop and back and rest well. Hope that helps, it's helping me already, now for me it's time to support my body in healing. Much love to all xxxxx☺️

I would like to know this too as my weight is increasing and doesnt matter what I do it doesnt shift and no one is listening when I say I eat sensibly. the Rheumy I just saw last week said I should have my jaw wired!!! I never feel hungry food bores me so she wasn't listening either. I have been reading about leptin a hormone which tells your brain when you are hungry and how overweight people were found to be leptin resistant and wondered if I have this and now there is metabolic syndrome which I am assuming is hormone or thyroid related (I have thought this for over 15 years as I had a hysterectomy aged 40 and have many symptoms) but don't know how I would find out when blood tests that are needed are so hard to get. Sorry for going on but getting really confused with info and brain fog and depressed about lack of care and big pharma rules in NHS. chubby hugs ~Joolz.x

in reply to

Flossy, see my reply to number one. Boy am I with you on the weight issues and fed up with medics who patronise and don't want to know especially now I'm an oap. I'll continue to fight for answers. Take care. X

Sorry to hear Kiki you've been through such a hard time, many of us know that feeling. For you now it is onwards and upwards. All the very best to you. X

Polaris profile image
Polaris

Well done Kiki for researching and not accepting the system - so glad you're feeling much better.

Another important vitamin often connected with thyroid disease and mental health is vitamin B12. A severe deficiency, from absorption/leaky gut/autoimmune issues can eventually cause psychological and neurological problems.

lc1973 profile image
lc1973

Hi

Glad you finally got some answers and are on the road to recovery. Id be interested to know what if anything your GP is doing about your low progesterone or has this been attributed to PCOS?

Kiki1st profile image
Kiki1st in reply to lc1973

Ic1973, I will find out exactly what's happened when I see the Endocrinologist, it is related to the PCOS, my appointment is in March so will repost when I get some answers 😊

Kiki1st profile image
Kiki1st

Hi Numberone1 thank you for your comment 😊 don't know whether you've read my previous posts, but I suffered a major breakdown just over 5 years ago. Thus I became under the care of my community mental health team. They first started me on anti depressants, anxiety meds and sleeping meds. Now this is where it all started, may I add no one through my care even mentioned the SIDE EFFECTS or DANGERS the meds could have on me. Where I say "dangers", I mean if you already have a condition or illness the implications of mixing drugs with any other underlying health problems. Nobody mentioned a thing!!! Anyway after about a year of already trying a handful of anti depressants as nothing seemed to work they then put me on huge doses of the mother of all mother weight gainers quetiapine, it's a mood stabiliser and also works as a tranquilizer to shut people up...... sorry I meant "sedative" πŸ˜‰. This I now realise was the start of a very unhappy marriage shall we say. Weight started to pile on and so did the physical symptoms of arthritic problems, food consumption ( and I mean going from one extreme to the other) headaches,fatigue etc etc etc. Throughout the years whilst having my routine appointments with my psychartrist(s) and support worker(s) nobody investigated my symptoms or adverse side affects they just kept treating the symptoms with more drugs upon more drugs and NOT investigating the underlying illness. Then I was diagnosed with bipolar disorder 18 months ago and yet another explosion in my body I was prescribed Depakote, this is where I think my body just literally started to pack up. I was in my GP's surgery so often I was even considering moving in ha! I was referred to the Rheumatologist and Neurologist and was slapped with the diagnosis of Fibromyalgia, more drugs prescribed to help with pain and discharged bye bye......by this time my blood pressure was starting to soar and I honestly felt like my body was literally dying on top of the physiological effects of nobody listening. Well I had enough!!!! I started doing my own research and listened to and read posts on the forums. It all started to come together, reading about PCOS and the effects it can have with psychotic meds, foods containing gluten, hormone imbalances (which can be caused from meds themselves). I can't believe that these "professionals" between them all:

1. Never consulted my medical records

2. Didn't test for Vitamin Deficiencies

........deeeerrrr

And how many years of study does it take to become a doctor?????????!??

Anyway many meds can play havoc with your metabolism and give you allergies but they don't tell you!! As well as pushing as much meds through the surgeries to get money...,.oh yes, but we won't go there today.

So in the end I DEMANDED all the blood tests which I had researched online, equipped also with pages and pages of medical reference's which I had acquired online. I knew what had happened to me I just wanted to see the results to confirm all along that they had screwed up and have been giving me the incorrect medication for my mental health which was like feeding me poison against my PCOS for ALL these years, leading to my metabolism being screwed hence weight gain and a very low deficiencency in Vitamins and a massive hormone imbalance. I'm no expert and I do have so much respect for our Doctors and Nurses but and I say a big BUT "we" the patient are not hypochondriac's or mentally impaired or niave of our own bodies, my frustration lies in repeating the same sentence over and over again "my body just doesn't seem well, there's something seriously wrong please can you help"............

I used to weigh just under 9 stone, dress size 8/10 always had been i'm 5ft 4in......I now weigh 14 stone dress size 18/20 which brought with it high blood pressure, food allergies, joint and muscle stress etc etc. This wasn't from eating 10 bags of crisps, 2 plates of chips, 5 lbs of sweets, 4 bottles of fizzy etc etc etc on a daily routine, which my health professionals believed I was doing after all I had the stigma of "mental illness" attached so I must be pigging out ( and please that is no disrespect to anyone and I mean that!!! ❀️) No it was my body being destroyed by the drugs and the adverse effects it was having on me physically and both mentally. Please please don't starve your body, it needs feeding to survive, again I'm NO medical expert but I would stress to anyone get a full test of your bloods especially hormones, glucose, cholesterol, RBC and Vitamin deficiencies. Eat plenty and plenty and then more of fruit and veg, pure virgin coconut oil and coconut water, drink drink & drink WATER. Lower or cut out gluten (they are adding and continue to add so much rubbish to processed foods) our bodies can't handle it!!! hence food allergies cropping up left right and center. Look at the G.I diet as well, eating healthy and not starving yourself with all these other fad diets, walk to the shop and back and rest well. Hope that helps, it's helping me already, now for me it's time to support my body in healing. Much love to all xxxxx☺️

Bluedragon profile image
Bluedragon

As mentioned above, you need to take K2 with D3 and also magnesium. Look at the Vit D Wellness group on fb.

Is copper a co-factor of zinc? I know there is supposed to be a specific ratio between them.

Isn't it a shame that when we go to the doctors they don't do a complete biochemistry of us- perhaps start when well so can see when changes happen.

Hi, what an amazing post to read. I'm newish to Health Unlocked but have used a couple of thyroid forums on Facebook and have also read loads more in the last couple of years as I'm so fed up with my weight.

I had one of those thunderous GP appointments a year ago with a GP who had been very thorough on previous appointments. I have Coeliac Disease, been diagnosed over 40 years (I'm now 61) and she noticed this on my records and has taken it very seriously. But on this particular appointment I told her I wanted to talk about my thyroid (already diagnosed hypo 8 years previously) and said I still have hypo symptoms. She asked what symptoms, (a slightly menacing tone in her voice) I mentioned my weight, being tired most of the time and some other things)

She looked me right in the eye and said thats not your thyroid, you just need to join Slimming World or Weight Watchers and get out and do some exercise. They are menopausal symptoms. I was quite stunned at that moment and could see she obviously thinks I'm a 'pie & chips, pizza, cakes & biscuits' kind of person but also tried not to hoot with laughter as I had to point out to her that I was about to hit my 60th birthday and had done with menopause 8 years earlier! So she just changed tactic and said the symptoms I described are age related.

More stunned silence from me, but I could also feel tears coming as I was on a losing battle here from this young woman. She noticed I was becoming upset and of course then came out with the pearler they all say, that perhaps we should be looking to see if I'm a bit depressed! At that point I got up from the chair and she said 'whatever you do don't give up'. I had to leave the room swiftly before I said something I might regret.

I did manage to tell her that I have two sisters both older than me at 64 and 68 and both have no problems with their weight or energy levels and neither have thyroid disorders, so being 60 does not mean weight won't shift and energy goes downhill.

A few weeks ago I got back to swimming which I hadn't done in a while and swam between 18 and 30 lengths of the pool around 3 evenings a week for 3 weeks and weighed myself the following week. Put on 3 pounds!

One thing I have learned, from all that I've read on forums and various websites is that with hypothyroid its not too good to go very low calorie. Metabolism is already running at a lower rate than it should be and if you eat very low calorie, your metabolic rate will run even lower, so makes it worse for weight loss. No idea what the answer actually is though. I'm now 61 and 3.5 stone overweight, which at 5ft 3ins tall isn't good. Up until I was 49 I weighed around 9 stone with good skin and hair.

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