Desperately in need of some advice please - Thyroid UK

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Desperately in need of some advice please

Kitten-whiskers profile image
24 Replies

Hello everyone,

The past week I have really being feeling awful, my hair is thinning out rapidly, my breathing is laboured, my chest feels tight, their is a thick white covering over my tongue, a bitter taste in my mouth, lots of stomach aches, along with all the normal symptoms, I have barely had a winks sleep in the last week and I just feel dreadful but I haven't changed my routine at all - so why am I feeling worse. I take a quarter of a tablet of Thyroid medication every 5 days (all I can tolerate) and have a lorry load of vitamins a day. I have spoken to the GP but get a blank expression and told to speak with the endo - she said they won't test for any other illness until the Thyroid is better because the Thyroid is the cause of most things. What can I do to feel a bit better - I can't stand feeling like this, it's made worse by the fact I do not know what to do to improve things, or why things have changed dramatically. My test results are all ok except the TSH and low cortisone - so that doesn't explain why feel like this.

Thank you

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Kitten-whiskers profile image
Kitten-whiskers
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24 Replies
nightingale-56 profile image
nightingale-56

hi Kitten-whiskers, I too have been feeling really bad for the past two weeks after coming of PPI's. I now know that you shouldn't come of them abruptly. Have you got your vitamin and mineral bloods to see where things might be going wrong. I have started on a stricter regime today in the hope that it will help and am also considering a private Endocrinologist with the aim of getting better Thyroid medication than NHS are offering at the present time. My blood levels have been lowered with the change from Eltroxin and this is when things like Achloridria can present (reflux). B vitamins - especially B12 - must be very good. Like you, when seeing GP all I get is a blank look and no advice - why do we pay them for nothing! Wish you better health and do look at your vitamins again. I have much the same symptoms and diarrhoea for the past 2 weeks with no help from GP. Janet.

Kitten-whiskers profile image
Kitten-whiskers in reply tonightingale-56

Hello Janet,

Thank you so much for your reply, I am so sorry you are suffering aswell, It is a terrible condition that is so misunderstood, especially by the GP's and Endos. I only have results from October, they don't seem to like you seeing your own results. Last time My Iron was above reference range (even though I dont supplement Iron) So was my B12, other things they won't test for "because vitamins are dangerous" quoted by my previous GP who also didn't know what T3 was.

I wish you luck Janet, one thing I would say is be very selective about which Thyroid Specialist/endo you see (lots of research first) I went Privately - waited over an hour to be seen, Sat down told him what had been happening and as soon as I mentioned my Adrenals he simply said I can't help you - 10 mins (if that) I was in their and it cost £150.00 - I was not a happy bunny. Their must be better ones out their.

Thank you for sharing you story, I don't feel quite so worried, I was begining to think their was something else really wrong.

Best wishes

QUE6T-33 profile image
QUE6T-33

Low Cortisone - what are you doing to support Adrenals? What Thyroid meds are you on, Levo, NDT, it might help to know.

Kitten-whiskers profile image
Kitten-whiskers in reply toQUE6T-33

For the adrenals I take 5mg Hydrocortisone daily along with I do take a lot of supplements - this is my daily intake Enzyme Digest with Betaine, Enzymes & peppermint Oil, 3 x 370mg Slippery Elm Bark, 1000mg Evening Primrose Oil, 500mg of Calicum, 250mg of Magnesium, 1000mg L-Glutamine, 1000mg of Flaxseed oil, 200up of Selenium, 30mg of Sea Kelp, Vitamin B Complex, 30mg of Chelated Zinc with 1.50 of Copper, Vitamin E the D-Alpha form 200 iu, 3 x 500mg of Garlic, Vitamin C 1000mg with rosehips & Citrius Bioflavonoids x 3, Acidophilus 3 billion active cultures x 2, Aloe vera juice. For Thyroid Medication I buy Westhyroid pure 1/4 grain and I take quarter of a tablet every five days.

Best wishes

Duchy82 profile image
Duchy82

the thick white coating on your tongue sounds like oral thrush which could also account for the bitter taste, the tight chest and laboured breathing could be a chest infection, what i dont understand is why the gp wont look at that because they are both an easy fix really and they need checking out.

Mind you i see you take garlic which should have kept thrush at bay as it contains a compound that inhibits the growth of yeasts.

Im sorry that you are not feeling well and that your gp can't seem to pull their finger out and get you sorted.

Kitten-whiskers profile image
Kitten-whiskers in reply toDuchy82

Thank you MCoates, I do not understand the GP's response either They really aren't interested.

I have had Candida for many years but can not get rid of it, I think with my tummy & Immune problems it keeps the problem going. I am just so fed up, I really do feel awful :<

Duchy82 profile image
Duchy82 in reply toKitten-whiskers

All gps are guilty to be honest to quickly blame the thyroid when diagnosed even my gp who is normally very good has blamed my thyroid (well supposed overmedication) for what turned out to be ibs.

It is difficult to get rid of 'simple' infections such as candida when the immune system is not working well im sure there is a way to adjust the diet to help with candida but some of the other members on here are more knowledgeable than me about that.

Sending you a big hug and hope you feel better soon.

Kitten-whiskers profile image
Kitten-whiskers in reply toDuchy82

Thank you MCoates - much appreciated x

Glynisrose profile image
Glynisrose

You should not be taking sea kelp, it contains iodine and that is a no no for any thyroid sufferer.

Kitten-whiskers profile image
Kitten-whiskers in reply toGlynisrose

Hello Glynisrose,

I take sea kelp to help my multinodular goitre but I can stop it

Thank you

Marylyn profile image
Marylyn

I had low cortisol,B12, &Vitamin D like you felt dreadful.ceased thyroxine 14mths ago Tsh normal ever since.It s a hard road trying to get a diagnosis.b12 was 290 but had all neuro symptons.so Gp recommended supplementing with Methyl b 12.I had thyroiditis you may benefit from gluten free diet.

Kitten-whiskers profile image
Kitten-whiskers in reply toMarylyn

Hello Marylyn,

Thank you for the info, I am so glad your feeling better, maybe their is help for me

Marylyn profile image
Marylyn in reply toKitten-whiskers

You really have to initiate investigations.my bones jaw,teeth aching sore eyes I was at neuro told her Vit d had not been checked for 12mths sure enough low.Google could it be B12 ? Amazing what Sally has to say.Sad thing drs don't even consider b12 I have seen 15 ,7 specialists 2 only picked up on it.Have found Methly B12 sublingual nuggets Solgar prescribed to be effective.

Kitten-whiskers profile image
Kitten-whiskers in reply toMarylyn

Hello Marylyn,

My Vitamin D has just been checked by the endo (she hasn't mentioned it so I presume she thinks its ok) I will get copies of the results though, they are all too quick to say "in range" it means they can dismiss a problem and that's happened all to often. My Iron & B12 were above the range (back in Nov) Their seems to be a reluctance to test for this things - the docs think they are insignificant. 7 Specialists - I hope after all that you are completely well.

Best wishes

Debbie

Marylyn profile image
Marylyn in reply toKitten-whiskers

I have been unable to work as a midwife for 14 mths because of exhaustion & all neuro symptons.Early morns are my worst nausea,cicadas in ears,aching all over,numb feet on L foot ,pins & needles in hands.My B12 is now 795 but apparently symptons don't go just because level is up.Need A hearing aid now because of nerve damage from lack B12.

Marylyn profile image
Marylyn in reply toMarylyn

My Vit d is 57 that's down & I have been taking 2,000 units/ day

Kitten-whiskers profile image
Kitten-whiskers in reply toMarylyn

I am sorry to hear that, sounds awful. People don't realise just how much we sufferer.

I hope things improve for you

greygoose profile image
greygoose

Kitten, do you get enough salt? Sea salt or table salt?

Kitten-whiskers profile image
Kitten-whiskers in reply togreygoose

Hello Greygoose,

I do not add any salt into my food at all

Best wishes

humanbean profile image
humanbean in reply toKitten-whiskers

Salt is an essential ingredient for a healthy life.

youtube.com/watch?v=sAGrUwE...

drmalcolmkendrick.org/2014/...

Kitten-whiskers profile image
Kitten-whiskers in reply tohumanbean

Thank you for the info - I always was told their was enough salt added to our foods, so we shouldn't be adding more. But it is clear to see you do need it x

greygoose profile image
greygoose in reply toKitten-whiskers

Well, Kitten, that's bad! You need salt - for your adrenals, for your heart, for every cell in your body. And not getting enough salt can lower your stomach acid and make digestion difficult. Could be one of the reasons for your stomach aches and coated tongue. In fact, if you go without salt for too long, you will die. It's a myth that salt causes high blood pressure and heart attacks, it doesn't at all.

articles.mercola.com/sites/...

tilly83 profile image
tilly83

Lots of great help here, my own offering would be to try acupuncture as well...... they know all about tongue coatings and what they mean.... track down a good one though, it's a weird and wonderful treatment that works for me (touch wood!) x It can also help with anxiety and sleep.....

Kitten-whiskers profile image
Kitten-whiskers in reply totilly83

Thank you Tilly - I will give it a go, my elderly cat has accupuncture and it works wonders for her

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