Wits end .looking for light at the end of a long dark tunnel 😔

[pinkrainbows]

Good morning everyone .this is my first post . And iv joined and been reading posts .what iv read a lot I can relate to and find I don't feel so isolated with my symptoms /condition ..I honestly don't know we're to start .so il just go with it ...iv been suffering for over 18 months with fatigue palpitations memory problems lower back pain hands feet burning sensation turning red /purple .vit d deficency b12 defiecy .I was found to have low cortisol at beginning of the year .the endroroligist I seen said I would get enough steriods of my inhaler (I have c.o.p.d ) and that was that .iv had several adrenal crisis endin up at hospital .intravenous steriods and sent home .this last crisis as wiped me out .my lower back pain and upper neck was unbearable .iv this time been sent home with a bag full of steriods .never seen a endroroligist .the doctor on duty spoke to one ...if any one as any advice were I go from here .il be so grateful . Thank you in advance 🙂

[SlowDragon Administrator]

First thing is do you have any actual blood test results? If not you need to get hold of them. You are entitled under data protection laws.

You may be able to view test results online - ring and ask about this. If you can then apply for online access to your account. All GP practices are supposed to offer this, in reality very few have blood test results available online.

If not then ask for print out of recent tests. Pick up in a day or two. They may make a nominal charge for paper.

You need to know results for TSH, FT4 and FT3.

Do you also have high thyroid antibodies? You need to know. Did GP or Endo ever test these? If not ask that they are tested.

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease). About 90% of all hypothyroidism in Uk is due to Hashimoto's

With Hashimoto's, until it's under control, our gut can be badly affected. Low stomach acid can lead to poor absorption of vitamins. Low vitamin levels stop thyroid hormones working.

Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges. Post results when you have them, members can advise

For full evaluation you need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested

If you can't get full thyroid and vitamin testing from GP

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should be done as early as possible in morning and fasting. This gives highest TSH and most consistent results

This link also looks at cortisol and its affects on Thyroid hormones

chriskresser.com/5-thyroid-...

[pinkrainbows in reply to SlowDragon]

Hi slow dragon .thank you so much for your reply .and apologies for my late one ..I have just moved GPS and not yet met the new ones till Monday coming ..I did however take your advice and rang the surgery about copies of blood results. .they have told me all my files not there yet and all so there be a charge of 50 pound if there is lots to go through print of ...I feel like I'm in limbo with everything at the moment iv been left well over year by a endroroligist and previous GPS .were they basically told me a inhaler would replace steriods I need .and the rest of symptoms were mental health and anxiety ..if you have any links of information for bloods I can request when I see the new gp any imforation that would help me learn /relate to theses symptoms .I'd be very grateful .thanks again for your reply 😊

[SlowDragon Administrator in reply to pinkrainbows]

Old tests look for TSH and antibodies results especially

For full evaluation of thyroid now ask GP to test TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested

They won't do all, but what not done can get privately

or just get all checked privately

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH and most consistent results

[shaws Administrator]

Welcome to our forum and am sorry you have been so ill. Many of us on the forum weren't diagnosed despite disabling symptoms and being given other diagnosis rather than the proper one. I shall give you a list of clinical symptoms and I'm sure you can tick off more than 1.

thyroiduk.org.uk/tuk/about_...

I am assuming you haven't had your thyroid hormones checked. This is the first thing to do - request your GP today (list of tests below). He wont do all of them, but the ones he won't you can get them privately. If your TSH is high around 10 or over you will be diagnosed in UK. In other countries if it goes above 3+ we will be diagnosed. None of us know how the number 10 was pulled out of the hat for being diagnosed whilst ignoring all of the clinical symptoms. Before blood tests we were diagnosed upon symptoms alone.

All blood tests for thyroid hormones must be at the very earliest possible, fasting and don't take medications before it but afterwards. If you were given thyroid hormones you'd miss the morning dose - you can drink water - and take it after the blood test. Taking it before will skew your results or remain undiagnosed or dose adjusted unnecessarily.

If you are diagnosed as hypothyroidism and prescribed levothyroxine (a thyroid hormone) which is taken first thing when we get up with one full glass of water and wait an hour before eating. This is an important procedure as food interferes with the uptake of levo.

Always get a print-out from now on of your blood tests and they must also have the ranges stated.

Post them here for comments from members.

Request:

TSH (thyroid stimulating hormone)

T4, T3, Free T4, Free T3 and thyroid antibodies. B12, Vit D, iron, ferritin and folate.

(I note you say you have deficiencies in Vit D and B12 so what has been prescribed for these?

Still ask GP to test. You can say you are trying to find out a way to recover from your illness but need proper tests for advice to be given. Some labs wont do all if TSH is somewhere in the range.

Get a print-out of the results with the ranges and post for comments. Ranges are important as labs differ.

We can have deficiencies in vitamins/minerals which can also cause symptoms but we should be treated optimally. I note you are B12 and Vit D deficient so after your new blood tests members will give advice on how to optimise them..

This is a link re Adrenals and thought you may be able to watch when it is shown.

healthunlocked.com/thyroidu...

We have to read, learn and ask questions as it is difficult to get diagnosed these days as the reliance is only on two tests, ie TSH and T4. We need all of them and especially when we have deficiencies we need good advice.

Members have a wealth of personal experiences, information and collectively we progress.

Any tests doctor or lab wont do, we have private labs which will do so .

[pinkrainbows]

HiShaw .thank you for your reply and apologies for my late reply .iv just replied to slow dragon explaining were I'm at with GPS .iv got my first appointment Monday . And any help information advice .I'm more than grateful .if there is links I can print of begreat .also because I'm on presidone will I still be able to have bloods done ..iv got several other health issues that I think could be related. But unsure .again thankyou for your time to reply 😊

[shaws Administrator in reply to pinkrainbows]

I have looked back at earlier posts by you and see you've also had lung problems which is not too good. My Dad always had problems too and it is very distressing if you cannot get sufficient air into lungs.

However, I shall give you a couple of links and, believe me, the doctors will never have seen them. They will also ignore them as they will follow their own guidelines.

It would appear that predisone interferes with the uptake of thyroid hormones so make sure your GP knows this fact.

medhelp.org/posts/Thyroid-D...

Tick of your clinical symptoms of those that you think are hypo:-

thyroiduk.org.uk/tuk/about_...

Doctors don't know much about clinical symptoms but give him a copy of yours.

If want you to have the best results for your blood test follow my directions above.

Breathing problems can be caused by hypothyroidism, maybe you've been hypo for a long time but undiagnosed which is quite common. Doctors know no clinical symptoms which we were always diagnosed with before the blood tests and levo were introduced..

Always get a print-out and make sure ranges are stated as labs differ.

web.archive.org/web/2010103...

Relax and try not to worry. On the forum we have people who've gone through lots of trials before being diagnosed.