Very little progress.

[LizzieG101]

Just a footnote for now. The steroids, given to me to cure my pneumonia and pleurisy and keep my lupus in check have given me cushings disease and type 2 diabetes. Has anyone on the forum recovered from CD and, if so, how? Thank you.

[SlowDragon Administrator]

This is your first post on the Thyroid UK forum

Did you mean to post on here?

Obviously weight gain is extremely common hypothyroid symptom

Adrenal complications are very common too, especially with autoimmune thyroid disease (Hashimoto's)

Hashimoto's is sometimes misdiagnosed as Lupus

Hashimoto's can present with butterfly rash across face

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels and thyroid antibodies

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

If you are taking any Levothyroxine, last dose of Levothyroxine should be 24 hours prior to blood test

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

Cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

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

For thyroid including antibodies and vitamins

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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Many people on here use saliva cortisol testing - including DHEA - can order from Regenerus

Cortisol is often affected by thyroid disease

[LizzieG101 in reply to SlowDragon]

My thyroid levels, they say, are normal because I am supplemented with 50mg Levothyroxine daily. I posted here because recommended by health unlocked. No-one has mentioned Hashimoto's. Well, not recently. Just steroid induced Cushings and Diabetes Type 2.

No-one has mentioned gluten free either. Just Low carb/high fat. A child of the forties (1947) i find the 'high fat' bit counter-cultural. Thank you for your help.

[SlowDragon Administrator in reply to LizzieG101]

50mcg Levothyroxine is only a starter dose

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range

NICE guidelines

cks.nice.org.uk/hypothyroid...

The initial recommended dose is:

For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.

This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Strongly recommend you get FULL Thyroid and vitamin testing....privately if necessary

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 primary hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

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

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

List of hypothyroid symptoms

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

Most UK GP's are unaware of the importance of full testing, or the connection between gluten intolerance and autoimmune thyroid disease

Just testing TSH is completely inadequate

Taking steroids will often suppress TSH

Most important results are FT3 and FT4

approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly.

Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet




(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)




Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

[SlowDragon Administrator in reply to LizzieG101]

ALWAYS get actual results and ranges on all Thyroid tests

[SlowDragon Administrator in reply to LizzieG101]

Many type 2 diabetics do well on high fat, low carb

diabetes.co.uk/diet/low-car...

diabetes.co.uk/in-depth/tru...

[SlowDragon Administrator]

If you have lupus and/or Hashimoto's then many, many people find strictly gluten free diet helps or is essential

[SlowDragon Administrator]

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Come back with new post once you get results

[humanbean]

Hidden has had Cushing's Disease in the past. She may be able to help you.

[Hidden]

Hi LizzieG101 I'm sorry you've got Cushing's Disease from your steroids, Humanbean is right I had Cushing's Disease but mine was caused by a pituitary tumour rather than from steroid use. You've actually got Cushing's syndrome from steroid use, people do recover from this & it's usually due to reducing your steroid dosing. I don't know how practical that is for you or whether you are taking them to help with other conditions? Cushing's can be caused by a pituitary or adrenal tumour or from a lesion somewhere else in your body, or from steroid use. I don't know if you are on Facebook but there is a Cushing's UK group which supports people with Cushing's or Cushing symptoms, there are several people on there like you with Cushing's due to steroid use.

[LizzieG101 in reply to Hidden]

Will try to find the Cushings group. Thank you