Hi everyone quick question does anyone with hashimotos also have bad vitiligo and if so have you received any help from the NHS? Mine is all over my body and the doctors don't want to know!!!
Vitiligo : Hi everyone quick question does anyone... - Thyroid UK
Vitiligo
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tweed
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I believe it is auto-immune too - so possibly that is why the NHS are burying their heads 
We have to work out the auto-immune triggers for ourselves I'm afraid.
I had vitiligo on my neck before diagnosis - also had problems with the sun.
Yes I agree but as usual they don't link things up and we are definitely on our own. Not enough knowledge about it and lack of interest!!!
Do you have any gut issues - I have often read that skin problems can be linked to the health of the gut. Just a thought
Yes I do. I gave up gluten for 4 years because I thought my unintentional weight loss could be coeliac disease . It didn't correct the weight loss at all but my gut was better. I've been tested for crohns disease too.
I have it mildly on my arms and legs, but I don't have hashimotos and do have raised ANA
When did the Vitiligo begin Tweed? I dont have vitiigo as such but after first getting Hypo symptoms my skin completely stopped tanning in the sun and now have Tinea Vesicolor. I went to private Dermatologists and they were baffled and just told me to keep out of the sun - sigh!
It started soon after the hashimos diagnosis in 2002. Then 3 years ago it suddenly got worse and now everywhere arms legs neck chest feet and hands. None on face yet thankfully. You only see the extent of it when you get the sun on it obviously but it's horrible isn't it!!!
I thought I had it Dr said it was a fungal infections prescribed shampoo which had no effect whatsoever another said not surprised it doesn't work!! I saw a herbalist who has machines to measure things and it turns out I've got Candida (again) so now going sugar free
Good luck there was a vitiligo cream on dragons den a while ago which seemed good
Yes I think fungal infections can cause this too but not all over body definitely autoimmune and I think it's more common with hypothyroidism not hypothyroidism so I'm a bit confused!!! Hope yours is just small area?
Following on from what Marz has said perhaps it is related to a gut or autoimmune condition? A lot of things seem to all boil down to our gut health. Could be worth investigating.
Thanks for this i will do that 😊
Sorry I just realised that I pretty much repeated what Marz said.
Good luck I hope you find something soon and please let us know how you get on.
Thanks so so much I really appreciate all of your help x
Just another thought. Do you have Hashimoto's? That's also an autoimmune disease.
I also just did a quick google about Vitiligo and some links do suggest an autoimmune attack on melanocytes as a possible cause. Melanocytes being melanin forming cells.
Yes I have hashimotos that came before the vitiligo. It's usually linked more to over active thyroid I thought.? The GPS are not interested at all so I've given up with them for the thyroid too as so many of us have. I stay away from them as much as possible. Thanks again x
Are you asking if Hashimoto's causes Hyperthyroidism? I can't say I know much about hyperthyroidism but it's definitely linked to hypothyroidism.
nhs.uk/conditions/thyroidit...
I've asked the endo about the swing from hypo to hyper and she said no it can do that I the early stages but then once the thyroid is destroyed you need thyroxine. So that doesn't explain the unintentional weight loss which is far more Hyperthyroid than hypothyroid it's all so confusing and no endocrinologist has ever answered me lol I'm a mystery!!!! Xx
Might be worth creating a separate post about your questions. I have heard about swings between hypo and hyper symptoms.
Have you read Izabella Wentz's second book The Hashimoto's Protocol? She provides exact steps and supplements to heal Hashimoto's. It's a really good read and I'd highly recommend it.
amazon.co.uk/Hashimotos-Pro...
Thank you I will get that xx
I have hypo - never been checked out fully to narrow it down but I believe it's hashi, my vitiligo stated on my face and spread downwards from there right up until I was more optimally medicated when it ceased to spread and actually reversed and is now only on my face. Definitely without a doubt linked however my prior GPs were appalling - have moved to a new area and more hopeful now that links and co-morbid conditions can be checked out.
Hi ollymummy thanks very much for your reply. Yes it depends very much on how helpful these gps are and mine have been horrendous. There was a bit on lorraine on Tuesday about vitiligo so at least people are starting to get educated about it. That Canadian model is brilliant she is doing a lot to raise awareness. They missed the main important problem though on lorraine, it burns so quickly if exposed without high factor and that's dangerous. I think gps who ignore this have no idea!!!
• in reply totweed
Do you use Piz buin 24 hr allergy cream ? I'ts the only one that hasn't got titanium dioxide in it. The aftersun cream lasts 24hours too. No need to reply. It is a naturelle product.
Hi ollymummy, can I ask what medication you had that reversed the vitiligo on your body? Was it treating your hypo? Just deciding whether it is worth getting tested for a thyroid issue as have vitiligo and doctors haven't asked for any blood tests to investigate such a link. Thanks
• in reply toollymummy
Dear ollymolly - Have done some research and found that vitamin B12 helps vitiligo.
My granddaughter has it quite badly but the B12 has helped repigment areas on her skin. She takes
drops which dissolve on the tongue and are now digested in the normal way. They are a special type of B12 which came from Global Healing.
You have to pay a tax for the drops but it is worth it.
Since taking the drops not only has repigmentation occurred but her hair which had white hairs, has grown out so that five inches of hair from the roots have regained their natural colour.
Vitamin A also helps repigment the skin. Retinol A
is highly recommended in the beauty world.
There are products online which have retinol A.
Eg Roc. Apricot has vitamin A which stimulates the
melanocytes to pigment, but some creams are made from the kernel which might have different substances to the fruit itself.
There is a cream made by Crabtree and Evelyn la source which contains vitamin a - which my grand daughter is going to try. May be you should be tested for B12 levels as you might find injections may be needed if you have a deficiency.
Looking at the half moons on your fingers will tell you if you have a B12 deficiency.
The NHS does not have up to date information on vitiligo and I had to look up vitilog on a website called progressive health US. Very interesting.
Global Healing has articles on vitiligo which explains how B12 repigments areas of skin in many people.
I used to have Tinea Versicolor on my back years ago. No idea how I got it. It used to really annoy and upset me. The GP would give me Nizoral dandruff shampoo to apply on my skin in the shower. I think the active ingredient is Ketaconazole. It was really awkward and I don't think it ever worked. Then after many years I noticed one day that it had gone by itself.
That's good yours went. No my pigment is destroyed by immune system just wondered if anyone had any help or advice from NHS but wasn't hopeful as they are so unhelpful with thyroid too. Thanks for all your comments though x
• in reply totweed
The vitamin B12 bio active has definitely helped vitiligo in child.
As for weight loss - if you are not diabetic, then cakes made with honey,
and organic sugar, and gluten flour might help. Olive oil is very high in calories, so well worth using liberally in salads, or in cooking. Oatcakes
and porridge and flapjack might help. Fish fried in oat meal, in sunflower
oil might help. Cottage cheese with half a teaspoon of flax oil is high in omega
fatty acids and is said to prevent/help cancer. Research originated in Germany but is now used in the US.
An administrator can give you a list of endocrine specialists who might help you. The use of high doses of vitamin C is proven to help asthma, hydrating the air ways, and stopping thick mucous forming. It is also recommended for the adrenals to help adrenal fatigue. I take soluble forms of 1000grms.
Zinc is included in some supplements such as redoxon. Vitamin c cannot be
retained, and zinc overload is unlikely. Recent studies in vitamin c
can be found on NUTRA ingredients.com . I never realiseed how essential zinc is for the gut and digestion. Turmeric and other ingredients are indicated to help repair the thyroid if exposed to fluoride.
tweed• in reply to
Thank you so so much for all of this information. The olive oil I do and coconut oil. Porridge flap jacks the lot. I eat absolutely everything and nothing changes. If I go on holiday and do no exercise and relax I actually lose weight. I've been everywhere to private and NHS endocrinologists but all tests are normal including test for Addisons which actually fits the bill more than anything else. Just trying to forget about it now as I seem to be a mystery with a high metabolic rate and an under active thyroid. Maybe it's all been a mistake and I've got an over active thyroid who knows?? Thanks so much for your reply that's such good advice much more than I have ever had from any doctor!! I will follow it all and give it a go. Tried the turmeric for joints and it was good. Many thanks again xx
• in reply totweed
Hi tweed - having looked up autoimmune diseases have discovered that thyroid disease is linked to vitiligo.
I think your metabolic disorder needs more investigation
by your doctor and endocrinologist. Has anyone ever mentioned
adrenocorticotropic hormone deficiency? This can be tested ACTH tests and insulin intolerance tests. If you have had difficulty in getting your symptoms recognised don't be phased - find another doctor on your panel who might be more sympathetic to you.
Having had a scare with lack of diagnosis from GP know this can happen. You have to be persistant and and show that your weight loss does not respond to higher calorie diets. If unrecognised this
deficiency can be life threatening.
Don't give up finding out what is making you ill - it can be a combination of problems.
tweed• in reply to
Hi gadgrantg this is very interesting. I have seen a private endo 4 years ago and he thought with the vitiligo etc that I had Addisons. Even though my blood pressure was normal he did do a short synachen test which was also normal. A couple of years later I was eventually allowed to see a NHS endo who shot me down in flames when I mentioned Addisons saying I've had the test and it was normal. I asked her then if I only needed one test ever to rule this out. She stated the obvious no it was like the thyroid and can change but she and no other doc have ever bothered to re test!!! Never have I had a glucose fasting test or drink test. I'm sick of the lot of them and if I go back they will think there are psychological problems as this is so unbelievable. Everyone else my age has gained weight with menopause so it is so weird and very hard to prove to them. I have seen dieticians also but it's not a food problem it's metabolic for sure. Thanks again x
• in reply totweed
If you look up adrenalcorticotrophic deficiency on wikapaedia it gives info. Blood and urine tests can be done and if there is a deficiency you can take tablets.
To get a referral to hospital you have to visit a G.P three times. You have to outline but not be specific
about a former referral to a specialist. Depending on where you live eg London area you can get nhs appointments in the main london hospitals with the top guys - eg Stephen Thomas at St Thomas's.
As you know if you go nhs you may not see the top bod, but an assistant. The hospitals have referral units
in the suburbs eg surrey to the speciialists.
Will find the names of other top bods depts.
tweed• in reply to
Thanks so much. I live in the Scottish Borders and Edinburgh is where the top consultants are I've asked to go there but they won't refer me outside of the Borders. Think I'm going to need private and that's a struggle. Will try one more time but this has been going on for so long I've had enough of their attitude!! Sad but true I'm now very wary of them as I've been trying for so long and they have been so rude to me ican't face it. Will have a good think. Thanks so much. I will look at this. You have been such a help x
• in reply totweed
Sunderland has a good reputation - it's now in England but used to be part of Scotland. Washington hospital - or spire group might be able to help. My family used to live near Berwick on tweed. Glasgow is their new nhs referral area.
Have heard England has a better reputation for some types of medicine.
If you go to your doctor and tell him that you have had some tests but not the ACTH, can you have one, as you saw a private endo in 2012, I'm sure it can be arranged. The trouble is that most GPs don't plough through old notes so you have to tell them when you saw the private specialist.
Sure you know someone who was or is a nurse
to refer to when asking for the test.
Very often private notes are not held in nhs notes
so this makes it difficult for patients as the NHS does not have to hold private consultations and notes and ops.
tweed• in reply to
Thanks very much again this is brilliant information. All the GPS that I have seen and there are many of them over the last 4 years know about the private consultant as it was Dr toft who is brilliant in the thyroid world. Because he has tested with the short snyachen test they are satisfied that that's the end of it and it will be very difficult for me to go back with this. I'm actually very wary of ever going again to see them as they have been so rude to me that it's just put me off. I know something isn't right but need to think about it carefully before I go as I've been fobbed off for so long and can't face it again. Could they all be so negligent to have missed this? If I go back and ask for this it looks like I'm challenging them and they don't as you know like this!!!
• in reply totweed
You need not worry about challenging them -
the fact is that some conditions are very difficult to diagnose - it is knowing what questions to ask to get the right replies. If I were you I would have an appointment with your nurse about your asthma condition. You can then discuss your general health and ask if this could be related to an adrenal condition and your struggle to maintain your weight. You can mention that you have been assessed by a specialist, but have not had the test for ACTH. Ask the nurse if you can ask the doctor for this test. As it is a blood test and urine test, it can be sent to the hospital for
your hormone levels. A deficiency will appear in the tests. I have found the nurses will
help you get the test. Having diabetes, and a goitre, I had an ultrasound test for my thyroid five years ago and asked for a blood test for thyroid recently. As you have a history of adrenal endocrine problems with the thyroid, there is no reason why you should not have a friendly chat with the nurse about your asthma with the underlying thyroid and endocrine disorder. I know exactly how you feel. I have had similar problems. One practice never referred me to a specialist- he was the leading expert in his field but no-one knew who he was, even though he is an eminent lecturer and specialist in the UK.
I arrived for a private appointment, with no referral letter from the practice. It was embarrassing for the consultant and for myself!
I knew the consultant from surgery in 2000 - so I had his number. I eventually left the practice as the reception and appointments staff, had let both myself and my family down.
If you have another practice which you can join - you could drop in and see how you are treated by the reception staff. You might find another health clinic which is more friendly and which does not make you feel stressed from recommendation. As this test is essential for your health to rule out certain illnesses which can be treated easily. You have nothing to lose and everything to gain by asking your nurse practitioner for access to this test.
tweed• in reply to
Thanks very much I will do this definitely!! As you say it's worth a try and nothing to lose! I know my nurse very well and she knows the problems I've had. Thanks very much for all your advice I'm so grateful. Very glad you got sorted In the end there's so many of us in this horrible position where you just don't fit nicely into an easy diagnosis!! Thanks again I will let you know any success x
• in reply totweed
Additional info -
some pharmacies do drop in for minor ailments which cover
blood pressure, skin care respiratory support in asthma and free diabetes tests.
eg kelso dunbar
union brae tweedmouth wells close square berwick upon tweed. You are lucky as your nhs trust has nhs choices of both adrenal and endocrinology and metabolic disorders.
www/northumbria.nhs uk/berwick upon tweed berwick upon tweed infirmary Infirmary Square northmberland TD 15 ILT . Without my local chemist helping with a
photoscan of skin condition - My skin cancer would not have been treated - I lost one of my nine lives nearly as it was potentially fatal within weeks!
• in reply totweed
Hi Tweed don't want to overload you with info -
looking up info on addisons disease and skin pigmentation on google I quote "hyperpigmentation is not a universal sign of adrenal insufficiency "and can be associated with vitiligo. emedicine.medscape.com
Idiopathic automimune addison disease includes
vitiligo ..autoimmune destruction of melanocytes. e medicine website.
I quote "Improvement of vitiligo after oral treatment with vitamin B12 and folic acid enhanced pigmentation. Used for 3-6months clear repigmentaion occurred in 52 patients - vitilog stopped in 64 and 6 patients had a reversal of vitiligo. pubmed.gov.us
You seem to have two autoimmune conditions.
You should ask your doctor through your nurse
for ACTH adrenalcorticohormone test
Diabetes
Thyroid
Your asthma may be linked to adrenal deficiency.
Have just looked up a parliamentary review
June 17 on thyroid disease in Scotland.
Think you need help. This is a bit of an oversight!
tweed• in reply to
Thanks again gadgrantg I will go and show the doc my skin and take it from there. I will dread it but will give them one more chance after this I will accept that my metabolic rate is higher in my middle age than it was when I was younger and contact the Guinness book of records as this is unbelievable I can eat anything and stay like a skeleton ha ha. Thanks so much again for the push and the information I will do my best to ask for help from them. So pleased you got there In the end that gives everyone hope xx
• in reply totweed
When you go you must tell him her about excessive tiredness and weight loss. You must mention that you saw a specialist some time ago
but have not had certain tests such as diabetes,
or adrenal deficiency tests. If you ask the wrong questions or dont explain that you have a history of suspected adrenal problems you won't get a review of your health. Well done you for plucking up courage - xx
• in reply totweed
Wish I could get that svwelte look - lucky you!
tweed• in reply to
Not great really no muscle not a great look and low bone density too as a result of being light and taking levothyroxine!!but that's another story!!! Am going to shut up 😁 x
• in reply totweed
What you are saying is you have had a lot of tests but still noone has cracked why you are feeling lousy. I have checked mayo clinic and nhs symptoms of addisons disease which your specialist seemed to indicate might be the cause of your problems. AS he was a/is a leading specialist, then his opinion must be more convincing than your GP, even though the consultation was long ago.
According to NHs addisons disease can develop over a period of months or years, and may suddenly get worse with additional stress hormone disease such as hashimotos.
Symptoms may include
extreme fatigue
weight loss wtihout conscious effort to lose weight.
darkening of skin salt craving low blood sugar
nausea vomiting diarrhea vomiting and abdominal pain- it is accompanied by low blood pressure not high blood pressure.
Nhs does not appear to recognise vitiligo as
part of addisons disease, though america diagnosticians do. That is the difficulty - Gps look for nhs text book symptoms - so darkening of the skin is what they look for not vitiligo.
What you need to know is what tests you have had in the past. Check the symptoms to see how many you have according to the list above.
As you have asthma, you may not know what is causing it - is it worse lying down or in cold weather? Have you had a lot of infections?
Presenting with skin symptoms is only part of your problems. Have you had well woman tests for bone density and osteroporsis? Do you have heavy periods?
it is a shame that many patients never see a specailist when diagnosed by a GP. I have had diabetes type tow for over 20years and have never been referred to a an endocrine specialist on the nhs! Make sure you don't go back to the same doctor as you did before. Sometimes sensiitive people like myself get so worked up that they feel dizzy before they even go into the surgery - my blood pressure shoots up with white coat syndrome! As the adrenal glands are the flight and fight response - then it is a nervy occasion. Take care.
tweed• in reply to
You have hit the nail on the head.
Yes they are taking it that Dr Toft the top endocrinologist in Scotland and probably GB has once 4 years ago done one short synachen test and it was normal. I've asked an NHS consultant 2 years ago if it could be Addisons and she snapped at me and said no you have ad the test. I then asked her if I only ever needed one test to rule it out of course I knew that wasn't the case. She snapped again and said no it's like the thyroid it needs tested again. She didn't do it as she looked at my hands inside my mouth and said in a nippy way no you don't have Addisons there's no pigmentation. To which I answered yes butvi have dark patches on my body. She ignored me.
My blood pressure is low when I take it but not that low. My resting pulse is 43. BP shoots up in consultations you are so right.
As for infections I have had lots of pneumonia the last few years for no reason just comes on without a cold or cough and it's horrendous. In September of last I fell and injured my ribs had a chest x ray and the hospital were on the phone the next day telling me I had a shadow on my lung and it wasn't infecttion. To cut a long story short I had 2 ct scans and a broncosopy over the space of 5 months and the verdict was after frightening the life out of me was inflammation and no answers why I have it. I have never smoked and have run for 33 years and been a fitness instructor for 30. So it's so easy for them to blame my weight loss on that!!!! As for inflammation I have no idea and nor do they. I also have oesteopenia even though the NHS say weight bearing exercise prevents it. So you can see why I felt like giving up. Thanks again though I'm phoning for an appointment today I promise x
• in reply totweed
I see why from other replies why you are going to GP with vitilogo
as this was not present when you saw specialist.
The NHS info on addisons disease gives
more accurate info than my regurge.
Initial symptoms include muscle weakness wanting to pee. thirst - later symptoms include
low blood pressure - the dp should test your blood pressure lying and then standing, to see if there is an alteration in BP according to NHS how to diagnose addisons disease.
Postural hypotension is nasty, - have had it with menieres syndrome with inner ear imbalance.
I can understand your stalwart stubbornness to solider on bravely as you were a fitness instructor and exercise. Weak flaccid muscles, might be helped by an excercise bike - My husband had weakness after being hospital with suspected septic arthritis - for months
he walked and did the exercises recommended by physio - he was lent a bicycle exerciser - within a few days of cycling building up the leg muscles the tone and muscle strength returned. He was threatened with a hip op - and a knee op - but he is better now.
As for the sync test - may be a repeat might be called for if the other symptoms you have have worsened due to the other illness
hashis - As You mention the effect of
your medication of levi on your bones - I think you should write another enquiry to the website for advice on how this occurs and what they recommend - the administrators will no doubt comment on any test results you've had - if you can obtain them from the gp which is your right.
You can get them free if you ask three weeks after the tests have been done or come back - but you might have to pay if you don't ask within the prescribed time.
You have to be firm with them - especial;y as your symptoms have worsened with hashi and you now have vitiligo and darkened areas on the areas of joints arms knees etc - which the book says is part of the diagnosis. However NHS does say that addisons does not always have to be accompanied by skin pigmententation - so your review seems more positive as you can tell them - I found that by writing down a list of symptoms helped me when speaking to Gp as you get flustered, get the hot sweats, and lose the plot! The classic response from oen Gp was - can only treat one condition at a time! Back to square 1 as no GP has time for a novel!
• in reply totweed
Final info you might find interesting on homeoforce.co.uk website. They supply adrenocortiotropic hormone through their homeopathy site. They also have a range of skin creams and treatments.
They can be contacted by phone and have a list of practitioners - they can answer your questions and give you guidelines for your symptoms. Well worth a look.
tweed• in reply to
Thanks so much once again I will have a look!! X
• in reply totweed
I visited a specialist in 1983 an had x rays for
thyroid but though I had evidence of thyrotoxicosis, the condition had passed
but I was warned that
thyroid disease is often
linked with diabetes which may occur later.
I had symptoms of diabetes without knowing and was finally diagnosed when I changed practice where the test was automatic to join panel. Another sorry fact is that sometimes tests on nhs are not accurate and they never say what the error is or do another test. I have seen other
people on website have their tests done privately to blue horizon tests? They then ask the website boffins to interpret their tests. However if you have an undiagnosed case of addisons disease it can be very dangerous if it
gets to later stages without being detected.
So from my recent experience of failed diagnosis of advanced melanoma, after four consultations of non recognition by GP, I would go to the local minor ailments facility in LLoyds chemist and NHS linked chemists and Boots, and tell them you are having difficulty in getting tests for a possible adrenal deficiency, and show them your skin with dark patches. They will then refer you back to your GP, who will be obliged to take notice. Some places have a photo scan facility which costs £35. This goes to a dermatologist, when you get it done the pharmacist will ask you about possible conditions like known tests for addisons and they will say hey this looks dodgy - you then go to the GP with the photoscan of dark patches linked to dermatologists advice for testing due to a possible underlying condition. Pharmacists deal with hormone drugs and have training in medical conditions and will pick up on your history. No need to reply - but do go to your nurse/ doctor as
you wouldn't want them to let you fail you - and write it off to experience - a friend who had skin cancer said to her doctor who had refused to test her
"Would you like my headstone to say here lies Jo bloggs who died as a result of skin cancer." She got her test and had a huge operation on her back which saved her life.
tweed• in reply to
Very interesting and definitely gives me hope. I have an appointment with the doctor I have seen once who told me in late August of last year that I kept coming back time and time again with the same thing and asked me what I expected them to do as I've had all the tests? I had the most horrendous appointment with him after that and he did consider doing another short synachen test if I had low sodium in my normal blood test. Obviously it was OK so I didn't get summoned for it. A week later I had the shadow on my lung and was told it was serious. Still don't even know what that was some inflammation that is still there. This will be very interesting on Monday not sure how he will be with me but will let you know. Thanks again for everything x
• in reply totweed
Replying to 915 am-a failure in communication.
Suggestions -
look up nhs a-z on addisons disease.
When you go back to your doctor say that the conditon you have now has worsened since the set of hashimotos. Ask for another thyroid test
and a diabetes test, as
you have never had one. You don't have to have all the symptoms of wanting to pee and being thirsty, to have high blood sugar. Tiredness loss of weight can occur with diabetes, though some think it is always connected with overweight.
Ask for tests on your adrenal glands, as the symptoms you have seen match those on nhs guidelines for patients, for adrenal insufficiency.You should have tests for thyroid every six months. You should ask to have copies of these test results.
If the appointment is abysmal and you are
left feeling uncomfortable, leave it for a few days then phone up nhs 24 and tell them how ill you have been feeling. This call will be a different clinic to one you are familiar with - if you go over the weekend, they may do tests, there and then and refer you through your gp for hospital tests.
Don't be phased by the abysmal response you may get "what do you want me to do about it "-just show them the nhs guidelines on how to diagnose adrenal insufficiency, or refer to them, ask if it is possible to have the tests and explain how the symptoms have worsened since the diagnosis you have had several years ago.
Mention any history of
family who have had diabetes or thyroid complaints or even cancer.
I am going to see if there is an nhs online helpline for patients to refer to for my own info - and will confirm if there is one in scotland. Can say that where I live the number for minor injuries unit at your local cottage hospital during daytime hours, is very helpful. You can go without appointment and ask at the desk. Or you can go through nhs 24
at week ends and see
someone who might help you. All the best for appointment. Think confusion lies over your symptoms being thyroid rather than thyroid plus another
endocrine condition.
tweed• in reply to
You are absolutely spot on!! I was going to ask for a thyroid test as my last one was last August. My TSH is always high which the endocrinologist said was another sigh of Addisons. No to a thirst no to low blood pressure no to anorexia as I eat loads but never gain any weight either fat or muscle. I will tell them all this my joints are killing me and I can't wake up in the morning feeling like I've been drugged even though I've slept for hours. Could be the thyroid again but when will it ever settle its been up and down for years!!! Thanks again I'm going to write it all down and be on my best behaviour with the doctor and see where this gets me. I know its comlicated and unusual but so is my weight loss when I used to be a good size 12 and had to watch everything I ate as a young person. Unbelievable. Will let you know and thanks for the added information really good to know xx
• in reply totweed
If your joints are killing you this might be another autoimmune disease such as arthritis - sometimes if you have an infection you can get your joints flaring up - the test list
might be getting longer -there are over 200 types of arthritis and rheumatism and weak muscles is a sign of this autoimmune disease. I think the excessive tiredness weightloss and joint pain gives a different slant to your health profile.
We have found that cutting down on red meat, steak mince, and bacon can stop arthritis - or the pain.
We eat more fish and chicken and have vegetable lasagne.
Gout is also a possibility affecting joints and can be helped by changes -cutting down on red wine, beer, and certain other foods which can trigger it off. The Gout society or other websites can tell you what food and drink to cut out. It does help if it is gout and your uric acid is higher than normal. Best of British luck definitely think
you must ask for tests.
PS My husband was referred to an orthopaedic surgeon before a rheumatologist - the end result was he was diagnosed with the wrong sort of arthritis with a poor prognosis.
So if you can get a referral to a rheumatologist you might crack a lot of stones at once including any adrenal problems.xx
• in reply totweed
Low blood sugar would turn up in a diabetes test a sign of adrenal disease along with high potassium and low salt -
look forward to hearing how you get on when you have had a chance" to have a go " xx
It pays to report "how it is -" - you'll get support from administrator if you explain your difficulties.
tweed• in reply to
I've had low sodium in blood test before and have never had a fasting glucose test. They seem to rule out Addisons if your blood pressure is normal.
Thanks again xx
• in reply totweed
Hi tweed - As a member of my family has vitiligo
have been doing a bit of esearch - a website www progressive health has information on how thyroid, addisons, arthritis, lupus erythmatous,
are linked to vitiligo. There are two creams
with vitamin B12 with cyclobalmin. One from america is bioactive and is called maxasorb
but it is from us so you have to pay duty on it.
The other is from i herb.com which has a lot of creams which look good. UVB treatment is used to repigment the skin. May be you have a treatment programme in your area. We have a new light therapy centre in our area been going for about 4years. If you go to your doctor with vitiligo, you should be referred to a specialist on the nhs. The level of information and treatment is sparse - but sun lotion and sun block is recommended. There is no info on B12 and folic acid or other supplements at all but the website progressive health does show reversal
of pigmentation with uvb treatment. It is a shame that regional health areas can be dog in the mangers not permitting people to go to other areas on the nhs to find the correct diagnosis and treatment. As for the addisons or hormone deficient diseases, a lack of cortisol in the blood
plays a big part in the disease. This can be replaced with such supplements such as sage, or
soy supplements.
The joints affected in arthitis can be the small joints in the hands knee, shoulder hip - this is linked with vitilogo too. I do hope you will go to the gp with the vitilogo, asthma, and thyroid
and may be the dermatologist will be able to recommend uvb treatment, or refer you to a rheumatologist for arthritis. As mentioned the B12 taken on tip of tongue 1 drop seems to be helping child. May be she will be referred for light treatment uvb as she has a centre in our area. There are a lot of foods to avoid for arthritis
including pastry white flour - but we find it is red meat that sets us off if we have too much.
The latest information on curcumin - turmeric essential oil , or turmeric in spice bottles shows it helps colitis, and inflammation generally.
The website on homeopathy might help too.
tweed• in reply to
Thank you so much again all your replies have been so so helpful and gives me hope. I don't think for a minute they will send me to a dermatologist or rheumatologist and Im ready for another let down but I will just have to get on with it and maybe one day someone will be bright enough to link it together but all the doctors I have seen don't!!!!! Not even the auto immune connection it's unbelievable!!! Anyway we all accept we are getting older but not being able to gain weight in midlife is not normal and they are negligent if they think it is and that is worth pursuing together with the lung inflammation what ever that is?? We will see how he responds to all this together but as I said my hopes aren't high and natural therapies may just be the answer. Thanks again for the diet advice too xx
• in reply totweed
I had tests on nhs before referral to specialist.
You could perhaps ask through nurse for tests that you haven't had before mayb diabetes, acth.
and contact your former specialist when you've had tests done. Normal practise is to have a second opinion if you are not happy with nhs.
In areas with long waiting lists you can't get appointments for a year in our area so we are forced to go privately!
My sister has the vitiligo pretty bad an all I can say is don't let them fix a hernia with mesh cause her vitiligo is now schlerederma
That's horrendous. That mesh has caused such terrible damage to so many women!!!
• in reply to7658
People have complained so much about their health with mesh the NHS have decided
to let patients have the mesh removed. I can't imagine it must be to have a condition such as scleroderma which has been caused by the mesh. May be your sister should see a skin specialist to see if surgery can be performed. My dad had skin surgery at
the Mc Indoes NHS hospital in the south of England. Not sure if you can be referred there from your area but as it is the top specialist skin hospital you never know if you can get s referral.
Yes I do it was one of my first symptoms it is not to bad and only a couple of patches and once started my throid medication i havent developed any more. I think i became aware of the link with thyroid via an american site.
Yes I have Hashimotos and patches of vitiligo on my legs. Unfortunately no doctors don't want to know. So if anyone has any advice or ideas?
However mine did get slightly better when I cut out gluten.
X
tweed• in reply to
Mine started in 2002 along with being put on levothyroxine. It was only under arms and groin and I wasn't bothered. 3 years ago after being on a gluten free diet for over a year it went everywhere. I've given up that expensive diet now as the doctors have assured me it's not coeliac disease. It's a very restricted diet to follow and hasn't helped at all I wish it had. How long have you had hashimotos?
• in reply totweed
Well after 10 years of being told it was just a 'thyroid problem and ridiculously high blood pressure' oh and then 'being over 40' I went to an amazing endocrinologist just over 2 years ago who diagnosed it along with fibromyalgia. My antibodies were 697! He was brilliant! Within 6 months of being on t3 ,b12,levo, topiromate and eating GF I lost nearly 3 stone and my blood pressure was back to normal and no longer needed tablets. Almost symptom free, unfortunately my levels seem out of kilter the last few months and symptoms returning, including vitiligo.... the only thing I changed was I was lazy with the gluten. Bloods last week proved it... going back for more next week to check it.
I'm convinced it's the gluten as it's only thing I changed.
X
tweed• in reply to
That's amazing!!! So pleased for you did you get coeliac test done? Mine is opposite I can't gain weight and unfortunately the gf diet didn't help that so I got fed up with the huge grocery bills it didn't seem to help with my immune system at all. My antibodies at the last count were 1300 and they stopped counting. X
• in reply totweed
No I didn't, think the gp gave up once I'd seen specialist.
Do you take other supliments? After reading up loads I do take selenium, magnesium was taking sea kelp and high vit c.... all of which I do need to keep up regularly( terrible at remembering)
The GF is expensive and an absolute pain in the proverbial but if it helps then worth it.
Maybe with seeing a decent endocrinologist? Where in country are you?
tweed• in reply to
Scottish Borders and think I need to pay yet again for one ad it's so difficult to be referred and she was useless anyway. I take magnesium and vit d. Thanks again xx
• in reply totweed
Is your thyroid hyperactive rather than hypo - sometimes weight is lost from hyperactive thyroid. Do you have other symptoms such as diahhorea - and what is your intake of carbohydrates?
Carbohydrates in milk (lactase,) potatoes, rice and fruit, might help you gain weight. Can you eat dairy and do you have a lactase intolerance? Have found that hard cheese cheddar cheese and histamines - a post on the web, has shown that histamines in cheddar cheese can affect the gut and other tissues causing inflammation. Radd and Dang responded to histamines in cheddar cheese, and showed how they had been affected by hard cheese, which contains more histamines, and also hwo frozen food is better then fresh food which has been left in the open air for more than a few hours - canned food too contains histamines.
I take anti histamines every day, which help rhinitis.
tweed• in reply to
Hi gadgrantg I definitely have hashimotos I'm on 125 levothyroxine. I eat everything loads of carbohydrates protein etc well balanced diet. That's very interesting about the histamines as I have quite bad asthma. Thanks for your reply x
• in reply to
Hi LLis B12 bioactive drops from Global Healing, with folic acid(vit b) can help
vitiligo, improve the melanocyte production to repigment your skin.
Recently have read on progressive health website that vitamin a derivative is the most helpful form of topical cream to help fade dark patches and increase melanin production in the skin. I have found a website that is in the uk which sells online cream
in virility-health.com. Their cream has the right formulation for vitiligo. Look out for special offers. Vitamin e and k cream found in palmers coconut oil may help too
but the retinol a product is the one that aids repair of neuked cells giving white patches.
My grand daughter skin has improved with vitamin b supplements with bioactive
preparation, folic acid tabs from holland and barratt. The speciaforumulation in drops is absorbed through drops in the tongue and is not digested, which affects the absorption
of the vitamin.
tweed• in reply to
Amazing information thanks so much I'm on to it. So pleased your granddaughters skin has improved this is brilliant news xx
• in reply totweed
Also found info that some people are extra sensitive to chemicals such as
chlorine. Swimming pools often have extra chlorine so much so that peoples swimming costumes fade. What will this do to your skin
especially if you have vitiligo. Hair bleach creams may have ammonia or
hydrogen peroxide, so you have to be careful with products.
The funny one I found was with Tesco and Asdas sparkling water-
it was in the papers that this is just tap water recycled and filtered
at vast profit for the stores! Also some areas in the south of England
have added fluoride in their water, so if the companies are recycling products using fluoridated water it can't be removed form the
water. Fluoride is a known hazard to thyroid sufferers.
This opens up a whole new area of research for quality control for
public consumers. We don't know if any of the soft drinks products
and beers are processed with fluoridated water - there is no info where
the drinks are made on the bottles and cans. We are in the dark!
tweed• in reply to
Well not too bothered about the chlorine just started swimming again and it's really helping my joints it's fantastic for asthma too so this comes before the vitiligo definitely. I will try the other stuff you recommend definitely thanks again x
• in reply totweed
well done - you glad your joints are better - you sound heaps better than several weeks ago hurrahxxx
tweed• in reply to
Ha ha thanks so much for all your advice that was so helpful and brilliant to have someone to talk to. All the vitiligo advice was amazing thanks again. Hope all well with you and your granddaughters skin continues to improve. Xx
• in reply totweed
Have started eating marmite again as it contains
b1 b2 b3 b9 and b12 everything you need for
vitiligo and hailed as a superfood by the telegraph
as it boosts the immune system fighting off bacterial infections, formerly used for troops in 1st world war to keep them fit! Hope you are getting on
ok.
tweed• in reply to
Hey I used to eat marmite I'm going to again as I love it. You either love it or hate it eh!!! I've booked an appointment at Lloyds pharmacy to do a fasting blood glucose test as I've never been give this can you believe it? At least it will rule out the type 1. 5 diabetes that is very connected to hashimotos. As I believe this comes on very slowly unlike the children's diabetes. Hope you are getting on OK? Thanks again for everything. Xx
• in reply totweed
Yep getting on fine. Brill about tests at chemists
you can ask about other things connected to
your health and they will transfer you to the right
referral point. Glad you are working it out -
it's all trial and error but once you've got
some help with tests they'll be able to help youxx
Well what a day. Lloyds pharmacy were brilliant. Been in hospital most of the day and type 1 diabetes diagnosed. Been a shock but I knew it was something and the help and advice you gave me, gave me the confidence to seek help. I can't thank you enough. Hope all OK with you xx
• in reply totweed
Let's call it female intuition knew something else
was going on lots of xxxx
tweed• in reply to
Thank you again I did too but was getting to the end if my tether!!! You are so caring and I soooo appreciate it xxxx
• in reply totweed
Type 1 should have been spotted long ago.
I have type 2 diabetes but I have to watch every thing I eat as the tablets don't work. I have managed to keep my sugar levels down
by watching my diet. If you are type 1 you will probably have insulin. My daughter's husband has
type 1 and can eat more things than me - he just balances out his insulin. But he has had trouble with his eyes but is mainly fit. He finds now in his late forties he has to watch intake of sugar in biscuits chocolate ...as it affects his vision.
He was like you he lost weight and was generally
tired. However he was a fanatic golfer and walker and swimmer. He also goes to the gym which helps reduce the sugar level in his blood.
At last good old Lloyds came up trumps!
I would like to see your GP and give him a piece of my mind!
tweed• in reply to
That's good to know. I'm very fit been a runner for 33 years and a fitness instructor for, 29 years. This has floored me completely I'm absolutely exhausted. Yes am on 5 injections a day since Wednesday. I have seen over 5 gps a few times each. They really need to link these auto immune diseases together I find doctors won't even acknowledge the immune connection and this must change. I'm so glad I went to Lloyds as they outcome could have been very different. Am disgusted with my practice and I have lots of questions I need answered ASAP. Hope your diabetes does not get in the way of your life!!!! Xx
• in reply totweed
no it doesn't - sometimes stress brings on ibs -
but I take fibregel which sorts it out. It's knowing when you are unwell you have to fight for help.
Are you feeling better and are you using a pen
or syringe and are you on a special diet.
I have been threatened with insulin jabs but I have tried to keep the sugars down and can bore you to death with my findings! I think I read something on joint pain on this site and neuropathy with pains in joints and limbs which could be part of diabetes or
vitamin b12 or arthritis..That's why marmite is such a good food for me as it helps digestion, energy,
and is good for the immune system with bacterial
infections. Hope you are swimming again.
tweed• in reply to
That's great you are doing everything you can I'm the same. Yes 5 injections a day from the pen and blood checks constantly. They have advised me not to teach my classes or run until everything is under control. I'm walking and yesterday sneaked in a swim which has made me feel amazing. Just feel like some marmite now you have mentioned it what a fantastic idea. Thanks once again we have never met each other but your help has been so appreciated and I mean every word of it. Starting to get my life back again 😊 xxxx
• in reply totweed
Am so glad you are swimming what a boost to
your morale . If you have time can you look
at RHR:Do raw vegetables hurt the thryroid.
Chris Kresser.com does a programme concerning
substances which are goitregens and on uptake
of iodine in the thyroid which can affect thyroid sufferers. He says that cabbage kale cauliflower if eaten raw can lower thyroid function. Also oxalic acid in spinach and Celeron might give you joint pain and muscle pains. Thank you for healping
me activate my woolly grey cells. Its' amazing to get feedback from folk on the same wavelength.
• in reply totweed
So glad you are gaining weight - you are amazing
hope the swimming is helping muscle tone - it's fun
to relax in the water.
tweed• in reply to
Hi just been trying to find your message on oil of olay cream was it a body lotion or for the face? Hope you are still keep well? X
• in reply totweed
It was a light cream for face but could be used
anywhere. It might be worth a small patch over
a few days weeks to see if it works.
A little will go a long way. I typed in pictures of Olay vitamin cream on bing .com. They came up
but there were two similar looking creams with same colour box. One was square the other
was taller but did not have vitamins. I always have to use zoom on my computer as even with specs
things are indistinct! Nice weather here today.
Feel much better - than a few weeks ago - think its the marmite. Have looked at half moons on fingers
the white bits and they are growing so taking b vits must help. Found another cream for my granddaughter the other day a body lotion made by crab tree and evelyn and myself. It has 250grams and is in the La source collection
of skin care products. It has vitamin A and E in it
and is a lotion rather than a heavy cream.
£28 pounds for the cream sounds expensive.
It is described as a moisturiser. I'm going to have a go with it as some areas of skin are dry.
Think I'll try the other one down the chemist too.
Time to pamper ourselves a bit! xx You sound great!
tweed• in reply to
Thanks again for all this so glad about the marmite too I love it and going to get some today. I I used to love it with cheese. Bet it's good on oatcakes too!!! Yes lots of pampering it will do you good enjoy xx
• in reply totweed
Hope you can enjoy more foods with your treatment and you are at last putting on more weight. Most people wanting to get fit look down on their scales when they lose weight. But you are getting fit by gaining weight. That's why your experience would be so useful with all those autoimmune diseases.
Have been reading info on Hashimotos disease
flares, interesting info on the use of infra red lamps
for the increase of metabolism in the thyroid has cropped up. However halogen lights can be 35 percent more effective than red light infra red lights. forefronhealth.com has evidence of people
who have improved with hypo thyroid and hashimoto flares who have sent posts on use of
various red and white infra red lights. People have managed to cut down their thyroid drugs. In an article on red and near red infra red light it discusses the pros and cons of infra red light therapy but recommends halogen light from fires
and bulbs as a safe method of stimulating metabolism in the thyroid. LLLT therapy is practised in many countries and has helped arthritis the thyroid and promotes healing.
Fascinating stuff. Getting out my halogen heater
and going to sit a few yards from it to help me tap
dance round the living room. xx
tweed• in reply to
Hey this is interesting I'm a beauty therapist also and many years ago we used infra red lamps for deep heat treatments. Also paraffin wax. We have These old treatments are the best and often called out dated. Used to have a halogen heater our border collie hogged it she would see us take it into the conservatory and get all excited following us in ha ha. I've emailed thyroid UK asking about the thyroid connection to type 1 diabetes as I feel awareness should be raised. Will let you know. Have a great Sunday xx
• in reply totweed
That's interesting - I did a beauty therapy course
long ago, with remedial massage - infra red lamps
were recommended for muscle pain and other
physical problems. Some one on a site said she
had kidney problems and used a lamp on her back and on other areas and it gave better pain relief
than drugs. There is a naturopath Ray Peat .com
who recommends infrared bulbs rather than lamps.
Apparently from other information when you use
the infra red lamp a substance is released into
your system which helps the immune system,
but it can produce some nitrous substance which may affect some people according to other research. Amazon.com sells the bulbs for poultry
production!! As an old hen that seems appealing but the bulbs are 250 watts and are too high for
treating the thyroid. Another site shows how to make your own infrared lamp with bulbs but unless you know the required distance to use the lamp
from the skin area, I wouldn't use one unless I had specific instructions. Another lady said she had an infra red heater in her bedroom, and over a period of weeks her TSH went down! I think going back to the cream, that the one made by olay for 5 pounds would be good as it has provitamina - which is the melanocyte trigger to increase pigment. I love the thought of your dog in the conservatory lapping up the halogen light - I have
an old one and you can get them from discount stores at a reasonable price like Tofs- original Factory Shop - Thanks for letting me know how you get on.
tweed• in reply to
Amazing we have so much in common as I also do remedial and sports massage I love it even though the been 34 years. I do you ever do it now? There is a home massager thing that has infra red one side and a vibration for muscle tension on the other and they can be used either together or separately. You get quite a heat from the infra red.cant remember the name if it but Google would tell us. The olay I think I used a while ago and unfortunately I was allergic to it. It had a sweet fragrance like orange if I'm on the right one? Yes the dog is gutted now as we have a different heater she's not been the same since ha ha xx
• in reply totweed
It looks like a new one to me. I will ask the pharmacist if it is scented. I am skin sensitive so won't use infrared massagers on the skin - but
there is one from red light.com and another with 48 led illuminators for 12 dollars from amazon dot com for throat and small target areas which might be ok as you put them on a table and can sit near
the infra red rays. I can't use ordinary infra red lamps they are too strong. Think I'll just turn on the halogen fire which cheers me up in the winter with it's red glow. No I didn't practise but learned so much from doing courses. Think you are brill carving out a career for yourself. Did you go to Blackpool for your courses or somewhere else?
Glad the dog is enjoying life - the family dog has had fleas and numerous baths to float them off -
she has had tablets, and now we have an elegant flea trap in the best possible taste in the sitting room, and spend our time counting the fleas on the white sticky paper. The dog got stuck on the sticky paper with her paw and was whining. She is only small. Totally hilarious!
• in reply to
You might be able to get retinol a on prescription as some people manage to get it. I get athletes foot cream
so it might pay to ask gp at check up. Retinol a cream has been around for donkeys years, and you can refer to
health articles such as progressive health on the internet and may be nhs guidelines.
• in reply totweed
Just been reading about "oats". Apparently even though brands such as Quaker oats say they are gluten free, the term
gluten is a legal description. In fact there may be traces of gluten in oat meal and oats, which may affect you gluten intolerance. Hope you are feeling better. It's disappointing when you think descriptions on the cereal boxes aren't accurate. There are other suppliers of gluten free oats and oatmeals online. Some are guaranteed as having no gluten.
Suppose you could eat rice flour or chestnut flour, but at the end of the day these turn into carbs. However at least you can control your carbs with medication.
tweed• in reply to
I tend not to stick to gluten free. My 4 years on it cost me a fortune and didn't prevent yet another autoimmune disease so I'm not doing it anymore. They really need to get these prices down it's absolutely ridiculous. Thanks again hope all well with you PS weight going on at last will be at slimming World before I know it ha ha x
• in reply totweed
You might be able to run slimming world - if you are a health and fitness instructor, and are now gaining weight, in a few months time, when you are stronger, you could approach slimming world
with experience of two metabolic disorders.
Diet classes revolve around unrealistic targets,where there is no knowledge of metabolic disorders. So many diabetics might join a class
but are misdirected in information due to their metabolic problems - also thyroid problems.
Gain weight and be a slimming instructor - it all makes sense tee hee.
tweed• in reply to
Ha ha ha ha ha ha ha the difference is of course the tiny bit of weight that's going on is the muscle that I lost due to using it as fuel. I still can't believe that NO doctor or specialist ever took a urine sample or fasting blood glucose test. It's absolutely unreal that no one made the auto immune connection!!!! I'm still in shock but definitely on the mend so so happy to feel like me again after this long road of uncertainty. Hope you are well? Xx
• in reply totweed
That is so scary - Suppose you can build your carbs with pasta and root vegetables fruit especially bananas. You went to a stage when
the glucogen supplies in your liver were used up
and your muscle was being burnt off.
Apparently large amounts of meat, store in your liver as a form of sugar, so if you are not vegetarian you could eat massages of chicken
and cottage cheese humous avocadoes
with most vegs which are said to make you fat
How about chicken and chips and peas followed by banana split, with double cream and choc sauce? Lucky you.! After an inspirational diet by Doctor Gundry I lost half a stone! I felt that may be
the berry low carb diet should be stopped as I was worried that the cancer might be present. I am too scared to try the scales at the moment but as my blood sugar is too high, I am having to watch the
plain biscuits for savoury snacks and am putting a
chain on the fridge to stop my snacking!
There is an old lettuce left in the fridge which I am going to make lettuce soup . That sounds exciting doesn't it!
• in reply to
Looked at the cream but it had pro vitamin B3 E
so it was not the vitamin A. The other cream by Crabtree & Evelyn has not been opened yet -
but I'm going to try it as a face cream though it is
for the body and not a heavy cream. Think you should run weight watchers - you are the perfect one to help people with thyroid and diabetes problems! You can watch underweight and overweight folk!
tweed• in reply to
Will have a look at that cream thank you. Ha ha well definitely exercise is the way forward and sensible eating. It's absolutely amazing how much your blood sugar drops even after walking. My concern now is hypo I'm hardly needing any insulin now as my exercise is naturally lowering the blood glucose. I would definitely recommend to weight watchers exercise as much as possible. Hope all well with you xx
• in reply totweed
I think your recovery over a period of a few months is spectacular. You have the self will to give up all those comfort foods and the drive to exercise.
It's funny you have found the exercise has reduced the blood sugar because years ago I went on a low carb diet, with high protein, and lost weight without much exercise. The advice is similar with type 2 diabetes to exercise to lower blood sugar. However I find that the slippery carb road even if calorie controlled, still won't help the type two diabetes. I find exercise stimulates the appetite, so when out for a morning walk need bacon and eggs and tomatoes for a top up. Have you gained over a stone in weight and now your blood sugar is low will you have to take levothyroxine at the same dose? Well done. You have encouraged me to go back to leek soup, with no bread, and start the day with an apple. Have been visiting family so the love handles are out of control!
Mine is on my foot funny I've just checked it out and it is t as obvious as before! My only is thought that it can be lack of t3 as I'm low on that, so taking all the vits for that and convertion aid, maybe it's as simple as that, hope so, I have a few antibodies, No doctor hasn't any ideas at all. Xx
Have you had it long? Sometimes I think it just goes on a small area and never gets worse then for other people it spreads years later it so weird!! There are treatments on the NHS but the doctors I've seen have just completely ignored it and one even snapped at me and said in a very nasty voice well there's nothing I can do for that!!!!!! Be different if it was them though not wanting to go in the sun for fear of burning. It's awful how we only have each other to ask for help with thyroid etc it's a disgrace!!!!
It was like a psirosis patch a few years ago before it settled into one speckes
I know it's frustrating for sure, I'm sorry I don't k ow any ins and outs of it, I just imagine the deficiency whatever is causing it will reoccur if not resolved, mine was probably nine ago it was itchy like the psirosis I've had on and off for years, and then it settled down but white specks apparent, maybe it isn't vitiligo anyway. Pigment less for sure xx
Thanks for your reply. It's fine in the winter but am in Spain and now realise how bad it is. I know there are way more serious conditions people have to deal with but just wondered how many other people with thyroid have this. You feel like a bit of a freak when the sun darkens the rest of your skin. But it's part of a bigger issue as you say and the GPS just won't help at all it's just frustrating. Thanks again this has been so helpful xx
....sorry can't be of more help, I feel for me I've been fortunate because even when had psirosis over a period of years when it finally subsided I didn't loose all the pigment as some do, so why I don't know,? Is your ft3 ok? I've been told by a helpful member that the body has to prioritise with it as it's needed for the big organs, heart, brain etc, so the body hair nails skin are going to loose out, That sits quite well with me. It could be as straightforward as this Xx.
Yes tweed, I have Vitiligo and hyperpigmentation also. My second autoimmune disease. It is slowing spreading over my entire body. I have hyper on my face and chest and then the Vitiligo is spreading everywhere else. I had to go and see a private doctor who wrote me a prescription for bleaching cream that costs £130 and it cost me £180 just to see him. That's pretty much all they will do.
Vitiligo is also the immune system attaching the body, in this case the skin cells so if you can figure out what causes your Hashimoto's disease then hopefully you can cure both. I do believe it's diet related. I was diagnosed with a Wheat allergy. So I'm going to be getting my Thyroid antibody levels checked (paying out of my own pocket) every 6 months or so to see if taking Wheat out of my diet will affect the level of Thyroid antibodies. Eating Wheat distroyed the lining of my gut which allowed larger protein particals to get into my blood stream which started a autoimmun attack. So I'm also trying to heal my gut and also cure myself of SIBO!
We have to try to figure this out on our own. Doctors will only go by the texts books they were taught with and as far as they are concerned it’s incurable and nothing can be done about it. I'm hoping that eventually I can at least lessen the attack on my body because the third autoimmune disease might be debilitating : (
Is the bleaching cream helping? It's just vitiligo I have. I think stress is a major factor and am taking more of a relaxed life now. Being busy is great but it can ware down the body and I think that's a major factor. I'm hoping we don't get a 3 rd one. Is yours thyroid too?
Hi tweed. I haven't bought it yet but it's just for the hyperpigmentation, not the Vitiligo. I think stress has a lot to do with it also I agree.
Mine is also Hashimoto's Thyroiditis. Our immune systems are going mad!
Try an illumination diet or the anti-inflammatory diet. See if that helps.
• in reply totweed
Have just spotted a new cream by Olay with vitamins with B3 E and provtiamina.
This is about £5 and could well help even your skin tone. Worth a try as pro vitamin and vitamin B are meant to help your vitiligo. Its a night cream in a square box with a yellow pattern it does NOT contain SP factor
• in reply toTaurinegb
Hi Taurinegb
Vitamin B12 helps vitiligo. My grand daughter has it badly but her skin and hair has repigmented since taking vitamin B12 bioactive drops from Global Healing.
Vitamin B injections might be needed if you have a deficiency. If taken with folic acid
this will help boost your immune system. Folates in dark green veggies are recommended rather than folic acid, but advice says to take folic acid on its own might
affect your health, and should be taken with B12. There are two types of B12 - the bioactive one dissolves on the tongue. The cost might be increased with customs duty- but one small bottle of bioactive drops will lst over a year - so it may be cost effective.
I paid £16 on top of global healings postage but don't regret it as the results in my grand daughter have been so good. If you look on the white half moons on your fingers and thumbs you might spot a B12 vitamin deficiency. If you have a few missing on non at all may be you should be tested for B12 deficiency?
Taurinegb• in reply to
Hi gadgrantg, thanks for the info.
I just ordered a test to check my B12 levels. That's so good to hear that it is helping your grand daughter : )
I have had vitiligo for over 20 years, way before the Hashis set in. Apart from one doctor telling me it was because I did not wash thoroughly enough, I never had any help. It is continuing to spread gradually, and now it is over more than 50% of me, including my face and hair, which has made a white streak (think Cruella DaVille!). I use a tinted face cream for the bits on my face and a tanning spray for my arms, but dont bother with my lilly white legs and body. It does not bother me, it is me and makes me unique, just like the rest of you!
Ha ha yes I agree. I have 2 white streaks in my hair and I love them. Have to watch the scalp burns so quickly though doesn't. Is it still spreading do you think?
Yes, backs of my hands are much worse this year. I am very fair skinned and dont tan anyway (went to the south of France and came back white!) but it is slowly progressing. So far only my feet are free of it. I have to be careful to cover up in the sun now as the white bits burn easily. So if you see a red and white elderly blonde with white streaks - thats me!
• in reply toserenfach
Hi Serenfach - my grand daughter has vitiligo - it had spread all down her legs back thighs but her face is clear. Since taking vitamin B12 bioactive drops which are absorbed through the tongue, her legs and thighs and back have repigmented so there a few isolated patches.
She has taken them since March. Global healing website sells them
and for two bottles which will last over a year each as you only need one drop a day the cost from usa including customs tax, is well worth it.
My husband and I are gob smacked at the improvement in her skin and her energy levels are high too. Another tip from reading is to use sun lotion
as the white skin can burn and darken. Know how difficult it is to manage skin conditions as we have both had surgery for skin cancer.
I use Piz Buin anti allergy sun cream expensive but on offer in chemists from time to time.(Factor 50)
Yes. I have both. There isn't anything you help fix your pigmentation loss...you could ask to try the light therapy treatment..I have steroid cream but didn't really help...it's very hard on you emotionally because of the stigma of it all.
• in reply toAkiyama
My grand daughter has skin repigmentation of skin in a bad case of vitiligo taking
vitamin b12 bioactive drops from global healing which are absorbed on the tongue.
We are thrilled with the improvement in her condition which is so difficult to cope with when you are a kid.
tweed• in reply to
Thanks I'm going to try that I'm so pleased for your granddaughter it must be awful for her being so young. The doc I saw was pushed for time as there was a power cut and so computer down. I mentioned the most important my joints and got both knees xrayed so will see if it's arthritis. He promised to look up what autoimmune diseases were checked at the beginning of the year with the lung inflammatory nodule changes on both my lungs which I believe is permanent and no idea what caused it. I have never smoked and have been a runner and fitness instructor for over 30 years so I didn't take it very well. They gave up looking when cancer and infection was ruled out. Am going to look for the vit b 12 product thanks again x
• in reply totweed
So pleased you are having a health review. The b12 product is the only one that bypasses the stomach, so it is absorbed rather than digested which may render the b12 useless. xx
• in reply toAkiyama
Hi Akiyama - have found that vitamin B12 and folic acid supplement and vitamin b6 can help vitiligo-
my grand daughter has vitiligo but it has improved with this. I have also found that
retinol a cream is very good for treating vitiligo patches, as it encourages the formation
of melanocytes in the skin and repairs the damage. You may be able to buy Neutrogena retinol a
antiwrinkle skin cream on amazon..com. Another website which stocks it is virility health,com. Roc skin cream is used too but the cream tube may be small.
and another preparation from Garnier is dark spot corrector
correcteur anti-taches, which have improve chloasma patch on my cheek.
it is not advised to take vitamin a in food supplement as it is stored, in the body
and you could give yourself too much. Foods however do contain vitamin a such as
carrots and yellowy fruits such as apricots.
Other combination creams of vitamin c and f as in palmers coconut skin cream
may help but retinol a has been around for donkeys years and is the best type for
vitiligo. Other vitamin B12 creams are recommended but are in the us and carry heavy
duty tax, which might not be disclosed with postage rates when you order.
The two go hand in hand...
Thanks to you all for your replies I so appreciate this xx
• in reply totweed
relied to Akayama with more info - re read your posts and see you query your dose of levo thyroxine as you are losing so much weight. When you have your annual check in
August, you should ask to be referred to an endo - and ask the administrators if you should ask to lower your dose of levo so you can gain weight. I have noted that
if you opt for counselling with psychology, someone will write back to your gp asking for
you to be reviewed for your weigh loss as it is not anorexia - This is the failure
of your gps - they are not taking notice of the weight lossxx
tweed• in reply to
Thanks I know it's not right but ive tried so hard to get answers and the last endocrinologist female was absolutely horrible and I've just had enough of their attitude. I think it's the cheap levothyroxine rubbish that's causing this but so many people are suffering with this rubbish we are forced to take it has to be one day exposed!!! These pharmaceuticals are the problem they are getting this stuff cheaply from India and the whole thing is disgusting. I just wonder what we are actually taking??? X
• in reply totweed
Imported drugs which are not branded must be questionable.
The BBC did a programme on sweated labour for surgical tools in India
which were imported into Germany then sold on as compliant with Euro standards. These surgical tools were found to break up during surgery.
I had an op this year and two syringes broke so it was scary to see
how cheap imports could cause a mistake in surgery with bad consequences.
tweed• in reply to
Yes maybe that was the horizon programme a few years ago on this subject and 2 factories in India were investigated there was no running water and they had destroyed all their data. The top endocrinologist I saw was the one who alerted me to this and he thinks it's the cheap medication getting through to this country which isn't the proper standard and measurements of thyroxine. This is so scary and the way I've been ignored makes me very suspicious indeed. This is definitely brushed under the carpet and it's our health suffering!!!! These big pharmaceuticals will be exposed one day I'm hoping soon!!!!! Xx
• in reply totweed
Yep! Think its not the major companies who are messing
up the drugs - it's the generic companies, who copy drugs.
Had problem with a water retention pill which was changed
on prescription to a generic form. It made me sick so went back to the doctor who gave me a the branded product which had been sold to another company under licence. It was such a relief to have the drug and found the ingredients in the generic drug were not identical - no wonder we can get ill with changes in formulation.
Not many people complain - but if you feel the drug is different
to the former brand you took, you might be able to ask for the branded preparation. Some chemists will supply you with a branded product, if you pay £6 towards the cost.
By the way looked up vitamin B12 deficiency on wikapaedia
and found deficiency can give similar symptoms to hashimotos
tiredess muscle fatigue. I never knew that B12 deficiency causes pernicious anaemia .
As for vitiligo - my granddaughter had streaks of white hair
which have grown out from the roots by about five inches, since she has been taking the bioactive b12. As for vitamin a retinol cream - it has beauty benefits as well as treating
pigmentation - so am looking out for retinol a based cream on amazon dotty com. Neutrogena - as well as virility health.
Hope you are enjoying swimming - great stuff!
tweed• in reply to
Yes the endocrinologist I saw who told me about this wrote to my GP and asked them to prescribe Eltroxin. This was supplied by goldsheilds who were bought over by mercury pharma so no more Eltroxin and all that has been given to me and thousands of others is generic. We have no choice and its the cheapest of cheap. Really wish I had the courage to medicate myself with pigs thyroxine but am worried more weight will fall off!!! Interesting about the vit b 12 as thyroid UK told me to get that checked too. They have done loads of full blood counts on me over the years and every thing is always normal. The swimming is brilliant thanks it's lovely just to chill out too 😁 😁. Hope all well with you and your granddaughter bless her having that so young x
• in reply totweed
I have just read a post concerning a top up
prescription and online sources of liothyrine as an
addition to T4. taking thyroxine as well.
You can contact administrators
directly from your in box message box. You drop down
the arrow by your icon to send your message
concerning your current medication and if
it is the right one for you to the administrator
such as "clutter". Your questions concerning
your generic drug, and what your test results are
for your condition can be sent directly to the administrator who will direct you how to apply for
the right drug on prescription. This info is
on support.healthunlocked.com. Think you
need some professional info from the support
service if your drugs are ineffective
tweed• in reply to
Thanks again for this. I thought T3 had been withdrawn due to to the massive price increase?I'm going to phone for a blood test on Monday and ask them to do not only the TSH but all the thyroid hormones and antibodies. Then I will get in contact with thyroid UK and go from there. Thanks again you have been so kind x
• in reply totweed
great stuff
• in reply totweed
Just read a post about generic levothyroxine
with complaints about merc pharms which have been taken over. They have gone back to their former product Activis and are getting better. Have you tried Activis and is it worth
asking for it, seeing as respondants on this
have recommended it through the British Thyroid Association website?
where as the product from merc was making them ill. It seems you are not the only one out there
experiencing difficulties with generic products
which have been altered.
I cant comment on your hashimotos and vitiligo but can recommend that there are articles
on vitilogo on line - I found from research that B12 from global healing webiste, can be used to promote melanin production in the skin. When used with folic acid, it can further help the blood. Global health sell a vitamin range called vegansafe with bioactive B12, which I use to
try and improve energy levels. I have type 2 diabetes, and a goitre, and have had a series of infections including pneumonia and an op for skin cancer, so have been pretty run down.
A family member has the vitiligo and am hoping that the B!2 will encourage th growth of melanin cells, in conjunction with ultraviolet light to create a more even skin tone.
There are other remedies which the NHS does not know about but these can be more radical than taking vitamin B12 which seems to tick the boxes. Apparently there is a block of some cells with vitiligo sufferers which is improved by B12. If you look at Globla Healing website and type in vitiligo you will find specific articles about the condition and how the B12 can help.
As for the hashimotos -I have read numerous posts on the use of a gluten free diet which
can help hashimotos if they have a gluten intolerance. You don't have to be tested to try a gluten free diet. Most flour contains gluten, so cutting out bread cakes biscuits pastry etc
and gaining your starch or eating bread made from gluten free flour or gluten free foods which are available on line and in supermarkets may be an option which could prove very helpful.
As you have a problem with antibodies which are affecting your thyroid any substance which might affect your immune system could be screen out. I have screened tannins out of my diet
in squashes, tea, coffee, red wine and beer. I have also screened out alcahol except on birthdays. I also have screened out chlorine from water supply. Other chemicals and pesticides and fluoride may need screening out with a water distiller rather than a water filter
The use of high doses of vitamin C 2000 mg a day is said by administrators to relieve adrenal
fatigue. I think the vitamin B12 has improved the vitiligo condition in family member which a been taken by one drop a day for about three months now. (Vegansafe). Dont' know if amazon dot com does vegensafe products - had to pay customs duty of £16. 41 for a small package extra to international postal rates from us. - think it is worth it. The bioactive product
does not harm the liver where some others which are cheaper, on the net might do.
Yep - nhs online chat and nhs 111 urgent symtoms checker.
In answer to your info question, NHS online chat is available as is
NHS for urgent attention and has a symptom checker option.
Not sure if they will refer you back to the same practice or give suggestions.
Think you should ask for an urgent appointment concerning your joint pain, as if it is an infection, it needs attention. We have to phone by 8.30 in the morning in our area - expect it is the same in your area. Take care
tweed• in reply to
Yes it's 9am here. They will probably just say it's age related but I do think the thyroid can do this if it's gone under again. Thanks so much xx
Woke up with itchy feet - had to put some athletes foot cream on - it's now 12.30 - You might be right about the thyroid but again you might be wrong. As you have had a lot of infections including
pneumonia, and you have had respiratory infections recently it is quite possible that you might have an infection which can affect your joints. I've had it and went on antibiotics which helped within days. It's quite possible you have several things going on at once
and you are not to know what they are. If you don't drive it must make it difficult to walk to the surgery and expensive to take the bus. I think its time you took the plunge - you have the perfect opportunity to talk about your joint pains, and show them with vitiligo which has got worse since the hashimotos. You can tell them about your state of health, and ask for tests for your joint pains
your thyroid, and may be a check up on your adrenal glands which you received advice from a specialist. Spoke to a nice lady the other day who had a history of ME - she had terrible migraines with artificial lighting. Someone she met someone who was doing a pilot trial on chromatic lenses for people whose eyes are light sensitive,
She was prescribed chromatic glasses which she waore for a month and was symptom free from migraines from wearing these glasses which used to be called reacto light. She too had a load of illnesses and infections and her condition was recognised as ME.
Some practices are more open minded than others. May be you should find a lady doctor - I found a new lady doctor who was able to sort out a chest infection, look at my feet for some athletes foot cream test my urine for a urinary tract infection in about ten minutes. Brill. Others said just one thing - can cope with anyone thing else! Have got a lady doctor at your practice? May be there is a bit of a personality problem with GPs who for some reason have closed ranks. I can see that you have an open personality, and want to try to find help -but it's a bit of a brick wall.
If you can find a lady doctor you could take a urine sample and ask for a blood test to find if your results are normal on the spot. They can test urine infection, which might be related to arthritis and joints. They can also test other things for arthritis psoriasis, candidida infection. Your muscle function should be looked into
your skin condition will be obvious with dark pigmentation and may be she will see a combination of problems that could be addisons disease.
As if is linked with joint pain it might be arthritis or rheum\tism brought on by damp and cold. Sudden pain in limbs and joints can come from adrenal problems as well as arthritis.om what
From what I have heard from their responses they have not respected the opinion of a specialist you saw. Ask them if his notes were sent to the practise if they have a record of them That's a starting point as you might be able to ask the specialists secretary if they have a copy of their findings including tests, for your doctor to look at. It is this gap of information which is not asked for in their files which makes the difference to how you are treated.Doctors usually ask if they are interested if there any specialists note on file to add to your records. Your joints could point the arrow for some tests which may unlock another information which you have never heard of. Your practise should ask for follow up tests for diabetes, thyroid and if you have lung disease go aback even after ten days to see if your lungs are ok. Hope this is not off the point but think some doctors can connect things together and get you sorted whilst others are n't so good. Maybe youve seen the ones who wind you up and are saying you are wasting their time.
Only you know which doctors are ok but if you have good transport try to find another practice - a lot of patients with thryoid disease have changed as they lose confidence in them. If there is a physio they can recognise joint pain you may get help as they are allowed to prescribe drugs and injections. You have to ask the doctor or reception to book. The physio will know about adrenal conditions which make your muscles weak and will guide you make to the specialist you need to see through the doctor or the doctor may prescribe tablets for joints and adrenal glands . My husnabd had weak muscles and joints and went on tablets for two years and
was strong as an ox. He's fine now without them but cango back to his specialist rehumatogist for any help on drugs etc.
My horlicks drink is getting cold so night night sleep tight xx
tweed• in reply to
Thanks again for all your information. Spot on again brick wall has been hit and doctors before the lung issue were so rude, maybe different now as they have had a shake up with the hospital thinking it was cancer. I will pursue the fact that no infection was found at broncosopy and no diagnosis was ever made for these lung changes which turned out to be inflammation. This inflammation could be causing the joint issues too? Need to ask these questions but as you said they only like one thing to discuss but I need to mention a few things as they link up I'm sure. So glad your husbands joints are better it's so debilitating but if mine is age I just need to get on with it and be directed with what pain relief is safe for every day. Hope your feet are itch free now horrible thing to have. Thanks again I will let you know when I've seen him. This was the first appointment they could give me so that's why it's the doctor who said there was nothing wrong just before the shadow was picked up on x ray. This will be interesting!!!!!! Xx
• in reply totweed
You are taking the right course of approach - one thing at a time -
lungs and asthma, can be related to other immune disease- as for vitiligo
good results can be had from UVB treatment - but to actually get tests will be be one step to being taken seriously. The trouble is the doctors see so many patients, they forget sometimes and never look at the records. You have to prompt them and say I went to see so and so in 20..and the specialist no names mentioned said I might have some sort of adrenal problem.
You only had the sync test but not any other one - for deficiency - wait until
the bemused look comes over their face and they scroll thru the computer..
can you find the record of my visit to the specialist ?--not there.?.
oh dear! I suppose I should have asked for my notes to go on record..I'm so sorry. The doctor might ask can you contact the specialist for the back notes.
to which you say "I'm not sure if I have a copy but I would like to go on nhs..
I wait for the magic password opensesame.!.
Look forward to the next chapter.
• in reply totweed
In answer to your latest reply - yep - it depends on the area, but
can see no reason why you can't get a referral to a dermatologist in your area for vitiligo. Aa you say it is a hard task to try and get help with so many different problems. My relarive was referred to nhs skin specialist for adviive on management,. Given the known history of thyroid problems, it shouldn't be too hard for the speculist to work out that you have an autoimmune response with vitiligo. Wish you all the best when you feel up to it in asking for advice from specialist. One thing at a time as you said.
No need to reply.
PS Interesting post healthunlocked.com/thyroiduk/posts/private/135604465/do-I-need-counseling. re lists of experts recommended by angel of the north who refers to louiseroberts@thyroiduk.org to contact.
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