Bloating

The test is called cortisol and can be checked by a saliva test.  Jean

I have just found out that I have multinodular goitre. No tests or diagnosis has been made as of yet but I have been urgently referred to an endocrine surgeon and a physician who work in conjunction .

Despite being a retired registered Nurse I had no idea whatsoever that the signs and symptoms were due to a thyroid disorder.

During nurse training we were only taught the bare minimum on the subject.

Since being told jut over one week ago that a multinodular goitre was an incidental finding on a CTPA scan I have been researching like mad. I know from friends that the NHS only does the basic number of thyroid screening and that diagnosis can be missed due to inadequate screening.

I therefore wanted to know what tests should be done in order to habe a thorough screening because I have felt acutely ill now since December 2013 and felt unable to tolerate these weird feeligs which are present all k and tired of feeling ill all the time .I am heartily sick and tired of being told that these multiple signs and symptoms were due to anxiety. Yes dr I would say  I know I am anxious but it is caused by these unexplained signs and symptoms and not the other way round.

Anyway since researching and especially since joining this forum I have come to realise that there are very good reasons indeed for the way I feel and am affected by this thyroid disorder. I also have peripheral neuropathy and fibromyalgia. I have spent a fortune on physio and a cbt counsellor. However I could have saved my money because now a scan has identified the problem Sorry to keep going on and on about it. I have been unable to sit down comfortably for well over a year. I detest going to bed because I am unable to get comfortable.

 I have neck and shoulder pain, Myalgia, fibromyalgia, feel like I am sitting on rocks, unable to walk far,spasming and burning sensations down my buttocks,backs of thighs, over each knee and dowwn the front,sides of each leg into both feet. I aa;so have the signs ans smptoms of plantar faciitis and feeI am being pushed upwards and unable to balance due to these sensations in my feet.

I also have stiiffness of both knees and ankles with saddle numbness. I am told that all of this is normal in thyroid disorders.

 I also have the signs and symptoms of plantar faciitis. Now I am concerned that the diagnosis has come too late for me to be helped with treatment.

Sorry if I have repeated nyself just feel tired but do not want to go to bed.

Jean

Why is this?

Is this a permanent thing?

Jean

Sorry, if this isn't a definitive answer.

In this reply I'm going to identify what is fact and what is my thoughts, so that everyone can question whether I've come to the right conclusions.

In my case the underactive thyroid is caused by my immune system attacking my thyroid (fact: confirmed by blood tests for anti-bodies against thyroid). Once a person has one auto immune disease, they are more likely to get another (fact: confirmed by research).

Allergies and interolerances are the immune system identifying the wrong thing (the allergen) as a problem and attacking it, causing all sorts of allergy symptoms such as bloating, diarrhoea, nausea, swelling, muscle pains, hives, excema etc (fact) - look up 'allergy uk' website.

I'm not medically qualified, but here is what I have worked out. I'm hoping that by cutting out the things that are a problem for say 6 months, I will be able to get my immune system to settle down. The problem I've got is that there are rather a lot of things I'm reacting to. I have a histamine intolerance, wheat inolerance and milk intolerance, so I keep accidently eating something that makes me react. Fact: there are no reliable tests for intolerances. So it's a matter of excluding a suspected allergen (i.e. food) and seeing if the symptoms abate. I discussed this with an allergy consultant and he advised me to exclude the allergens. Since I saw him 3 years ago, the number of foods I'm reacting to has increased and the reactions I get worsened. What do you think about my conclusions?

I think there may be value in starting a new discussion on this topic, so I'll do so. Barbara 

Why are anxiety and panic attacks signs and symptoms?

Why do we get spasms and muscular pain?

I have had two panic attacks this morning. I have long qt and take cardicor 1.25 mgms daily for this.

Does anyone know why these horrible signs and symptoms vary from day to day?

I must arrange some blood tests and know I have asked this question before but does anyone have a comprehensive list of blood tests that should be  done to do a thorough thyroid screening and bearing in mind the finding of a  multinodular goitre on a ctpa sccan? Many thanks and feedback will be greatly appreciated.

Jean

Jean

Is it safe to take it without benefit of blood tests and just with a diagnosis of multinodular goitre seen on a ctpa scan. Jean

I regard food as my enemy due to all of this. I just want to be 'normal' again. whatever normal is!!!!!

I do not know enough about allergies and intolerances but from my own personal experienc have found the same as yourself. I think that the immune system has been damaged by antibiotics and a drug called perampanel albeit I only took 2 mgms on four successive nights as instructed by the neurologist.According to info in the Public Domain this drug has been banned in Japan and the USA so why is it used in Britain?

Meanwhile I will researc the allergies and intolerances websites. This thyroid business is just too awful for words.

Jean.

Just what is going onin this horrid condition?

Jeanx

Here are some practical things you can do to help the symptoms you've listed.

For the plantar fasciitis try wearing training shoes.

For the getting comfortable in bed - a different mattress may help (test this out by going bed shopping and lie on them to see if you can find one that is comfortable - expensive isn't necessarily best).

Stiffness in knees, muscle pains, anxiety etc. should go away if you get treated for goitre (may cause under or over active thyroid).

Gluco samine may help with knees and joints. Be cautious if you have a problem with shellfish, in which case get ones from health span that are vegetable based.

For blood tests, look at the discussion started by Remotheboss as ShelleyC (from memory so may be wrong person) has given a comprehensive list of relevant blood tests. (I know I wrote this on a different discussion, but thought it might help people in this discussion).

Try ringing the hospital consultant you've been referred to, to see if you can fast track the appointment, you may be able to take a cancellation, or be able to ensure you get an appointment at a time you can make.

Above all, don't give up, some of these things will go with time (I still don't know why my plantar fasciitis went, but wearing training shoes definitely helped).

Other symptoms are likely to improve once you are being treated for the goitre problems. Pick off each symptom and address it.

There are other things you can do (e.g. kelp), but they may mess up any blood tests you have done so are not a good idea at the moment.

If the consultant recommends blood tests (likely) ask him how long it takes before the results are back. Then before you have the blood tests done, copy the blood test form (as you have to give in the form when you have the tests done) - the hospital reception did this for me so I could go and get the test done straight away. When the results are back, ask your GP for a copy of the test results (this is helpful as it shows the ranges that each test should be within - the ranges vary between hospitals and type of machine used).

All the best, Barbara

Free T3.

However I would like antibody tests doing plus any other tests.

Jean

I console myself by thinking "by putting this much effort in keeping fit and healthy I bet I'll live to a ripe old age and without as many problems as other people get as they age!"

Take heart, once you get the goitre sorted, many (possibly all) the symptoms you have will greatly decrease or go away completely.

Barbara x

Are any other etsts required other than TSH, Free T4, Free T3, what about reverse T3 and TPoa and thyroglobulin for hashimotos disease and hypthyroidism.

Jean

The T4 and reverse T3 have to be done together I just feel panick stricken over the whole business.

In the discussion by Remotheboss titled Can anyone please HELP me? Sara05235 wrote:

blood test to get the following

Ferritin

B12

Vit D

TSH

T4 and T3

Cortisol

TPO antibodies

They may do in stages but push for them. In the meantime go to a good health food shop and buy best iron and vit b complex, magnesium , zinc and selenium. Take daily.

(Personally I wouldn't take these until after your blood tests in case they affect the results - ask your GP if they'll do the blood tests for you, it'll be quicker than waiting for the endocrinologist - Barbara).

Sara continued...Check through any results that are not in optimal range and address.

Hope you can use this to further investigations. I know Exactly how you feel abs what's been going on is lack of nutrition and correct balance of key elements in your body.

Avoid caffeine , tea, drink pure water , herbal teas and almond milk. Avoid gluten dairy and soy whilst going through healing. Eat organic. Esp meats. Avoid processed foods and sugary foods to prevent adrenal stress.

I think with a careful attitude to rest and balance you will slowly recover.

Thyroid and adrenal exhaustion often go together.

Read up about t4 and t3 and and rt3, tBG and cortisol with HPA and HPT axis or watch some videos on you tube. And just take some light notes.

gill43753 wrote to remotheboss • 20 days ago

...With the brain fog,your memory is easily affected,so write absolutely every symptom down, and really insist that you have something wrong, when you see a doctor...It's wise to focus on what is affecting you most, but your doctor needs the complete picture. Why not print/write out what you've put on this site, and get your doctor to read it. I did that, and also booked a double appointment so that the doctor wasn't clock-watching. Make a point of saying that you've made a double appointment so that you can thoroughly discuss everything...Make it clear that you are suffering with the anxiety of the symptoms, and not getting the symptoms from being stressed.

I think that's probably enough to be going on with! Barbara x

You mentioned panic attacks, which made me wonder whether you are deficient in any of the Vitamin Bs (there are several). Many of the vitamin Bs are essential for the correct operation of the nervous system, specifically: Thiamin (vitamin B1), Riboflavin (vitamin B2), Niacin (vitamin B3), Vitamin B12. As the body gets older it gets less efficient at processing vitamins, particularly B12 so one may become deficient even if diet is ok.

Hope you feel better tomorrow.

Barbara x

I have now copied the list of tests etc and made notes. Thank you for being so patient and understanding . I have gone thru so much especially in the last 18 months. My stomach churns over at all this.

Jean

I am taking Vit B12 1000mcg daily plus 30,000 i,u of vit D a week plus adcal D3 . Under the instructions of an endo who I saw some years ago with pains inmy ribs which were put down to a Vit D def disorder.

I had a Dexa scan done in January 2015 which shows osteoporosis.

Jean x

The only suitable med is an antibody injection called ranu..... something or another will post the name when I read the report.

Have a quick look at my post on 'hypothyroidism and macular degeneration' (a condition which is reasonably common as one gets older), I posted it for information and to raise awareness. It's easy when one has so much stuff going on, like you do, to miss anything new. If one develops the wet version of macular degeneration action needs to be taken quickly - Lucentis - (NICE guidelines are within 2 weeks) to save eyesight. Luckily I've only got the dry version - the only thing one can do is take Viteyes - a particular combination of vitamins and minerals, that has been shown by research to slow the progression. Though it's not something that would be advisable for you to take without medical supervision, and only then if you develop macular degeneration.

Have you ticked the box on your forum account to receive weekly updates/newsletter? If so, you should have received notification that a new discussion was started.

You do already seem to be doing as much as you can to combat your medical conditions. Thyroid disease causes muscle pains so there is hope that, once you get treated for it, you will feel much better.

Keep battling! Barbara x