No idea what way to turn...advice please - Thyroid UK

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No idea what way to turn...advice please

Nads12 profile image
16 Replies

Hi I am newly registered, I have so much going wrong with me. Polycystic ovaries (diagnosed 2015), low cortisol (diagnosed 2014), low thyroid (diagnosed 2011)

I take 150mcg levothyroxine and feel breathless, thyroid swollen, losing eyebrows, losing eyelashes, pain in front of neck over adam's apple, bowels not moving as well, feeling cold, sweating less. If anyone can advise I would be grateful thankyou

TSH 8.1 (0.2 - 4.2)

FREE T4 13.2 (12 - 22)

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Nads12 profile image
Nads12
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16 Replies
jimh111 profile image
jimh111

These results and your signs and symptoms show you are undermedicated. Your dose should be increased, I'm surprised your doctor didn't pick up on this. Make sure you take your levothyroxine on a fairly empty stomach and away from coffee. You can take it before bedtime if that is easier.

humanbean profile image
humanbean

How was the low cortisol diagnosed and what treatment are you taking for it? Do you have Addison's Disease? If you have Addison's then you need some kind of treatment for it - it can't simply be ignored.

Nads12 profile image
Nads12 in reply tohumanbean

Thankyou I have Addison's disease found through blood tests and I take corticosteroids for it

humanbean profile image
humanbean in reply toNads12

Do you think your Addison's is adequately treated? I don't know how levels of cortisol are checked after diagnosis and treatment, and how it is monitored.

The reason it is important is that cortisol and thyroid hormone levels have a strong relationship. If one of them is wrong it can affect the other.

LOUISEGALLOWAY22 profile image
LOUISEGALLOWAY22

I also have an underactive thyroid and addisons disease, i got both during my pregnancy with my 2nd child. Losing hair means your thyroid meds arent at the right strength. How many MG are you taking daily for your steroids? If your on too much steroids it can cause alot of side effects.

Nads12 profile image
Nads12 in reply toLOUISEGALLOWAY22

2.5mg prednisone, have only just started

SlowDragon profile image
SlowDragonAdministrator

So you probably have raised Thyroid antibodies. Can you confirm that?

High thyroid antibodies is autoimmune thyroid disease also called Hashimoto's

Highly likely to have low vitamin D, folate, ferritin and B12

Can you get GP to test these, you also need 25mcg dose increase in Levo

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. DIY finger prick test or option to pay extra for private blood draw or

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

Hashimoto's very often affects the gut, leading to low stomach acid, low vitamin levels and leaky gut. About 5% are coeliac, but over 80% of us find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms.

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

Low stomach acid can be an issue

Lots of posts on here about how to improve with Apple cider vinegar or Betaine HCL

thyroidpharmacist.com/artic...

Other things to help heal gut lining

Bone broth

thyroidpharmacist.com/artic...

Nads12 profile image
Nads12 in reply toSlowDragon

TPO antibody 304.5 (<34)

TG antibody 358.3 (<115)

SlowDragon profile image
SlowDragonAdministrator in reply toNads12

Very definitely Hashimoto's

Read as much as possible about Hashimoto's, medics ignore it completely

Probably essential to be gluten free.

Definitely get vitamins checked by GP or privately

Once you are stable on increased Levo, improved vitamins and addressed all vitamin deficiencies you may need addition of small dose of T3

Avoiding all soya, including soya lecithin if possible, it's no good for thyroid issues

Also flouride free toothpaste. Plus check your water supply does not have flouride added (most don't)

Nads12 profile image
Nads12 in reply toSlowDragon

I have these results already

Ferritin 22 (30 - 400)

Folate 2.3 (2.5 - 19.5)

Vitamin B12 199 (190 - 900)

Vitamin D total 25.5 (25 - 50 deficient)

Thanks

SlowDragon profile image
SlowDragonAdministrator in reply toNads12

All much much too low.

Is your GP treating any of these, if so what supplements are you taking?

See SeasideSusie detailed replies on vitamin levels and how to supplement

Eg

healthunlocked.com/thyroidu...

SeasideSusie profile image
SeasideSusieRemembering in reply toNads12

Nads12 Are you taking anything for these dreadful vitamin and mineral results?

Nads12 profile image
Nads12 in reply toSeasideSusie

I am hoping to speak to GP today about this, I don't think they are being adequately treated. I only take 800iu vitamin D3

SeasideSusie profile image
SeasideSusieRemembering in reply toNads12

Nads12

As far as Vit D is concerned, 800iu isn't enough, you should be getting loading doses - see NICE treatment summary for Vit D deficiency:

cks.nice.org.uk/vitamin-d-d...

"Treat for Vitamin D deficiency if serum 25-hydroxyvitamin D (25[OH]D) levels are less than 30 nmol/L.

For the treatment of vitamin D deficiency, the recommended treatment is based on fixed loading doses of vitamin D (up to a total of about 300,000 international units [IU] given either as weekly or daily split doses, followed by lifelong maintenace treatment of about 800 IU a day. Higher doses of up to 2000IU a day, occasionally up to 4000 IU a day, may be used for certain groups of people, for example those with malabsorption disorders. Several treatment regims are available, including 50,000 IU once a week for 6 weeks (300,000 IU in total), 20,000 IU twice a week for 7 weeks (280,000 IU in total), or 4000 IU daily for 10 weeks (280,000 IU in total)."

Each Health Authority has their own guidelines but they will be very similar. Go and see your GP and ask that he treats you according to the guidelines and prescribes the loading doses. Once these have been completed you will need a reduced amount to bring your level up to what's recommended by the Vit D Council - which is 100-150nmol/L - and then you'll need a maintenance dose which may be 2000iu daily, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk

There are important cofactors needed when taking D3

vitamindcouncil.org/about-v...

D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.

Magnesium helps D3 to work and comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds

naturalnews.com/046401_magn...

Check out the other cofactors too.

**

If you say what you are being prescribed for the other deficiencies, if it's not enough I can give you some information to go through with your GP.

So what's being done about Ferritin - have you had iron panel and full blood test done also?

What's been done about Folate and B12?

Nads12 profile image
Nads12 in reply toSeasideSusie

3 ferrous fumarate because complete blood count and iron panel showed iron anaemia and 5mg folic acid

Thanks

SeasideSusie profile image
SeasideSusieRemembering in reply toNads12

OK, you are being given the appropriate treatment for iron deficiency anaemia. Take each iron tablet with 1000mg Vitamin C to aid absorption and help prevent constipaton. Always take iron 4 hours away from thyroid meds and two hours away from other medication and supplements as it will affect absorption.

**

What about B12? It's way too low to be ignored. Do you have any signs of B12 deficiency b12deficiency.info/signs-an... I think you may need testing for Pernicious Anaemia and possibly may need B12 injections. Post on the Pernicious Anaemia Society forum for further advice healthunlocked.com/pasoc and mention the iron deficiency anaemia as well as your ferritin, folate and B12 results, plus any signs of B12 deficiency.

If you need further testing you should not be taking folic acid at the moment.

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