Prednisone and NDT - : Hi, At the moment I am... - Thyroid UK

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Prednisone and NDT -

Booblet profile image
14 Replies

Hi,

At the moment I am taking 2 x 2.5 micrograms of Prednisone due to adrenal problems: *Both Cortisol and ACTH were very low (Had these tests completed privately due to NHS not doing ACTH - Cant aford this again!).

However, I am also taking NDT (from Thailand) x 2 tablets a day. I am feeling very ill at the moment **sweating, very anxious and depressed. I think the worst sympton is the terrible anxiety - both mentally and, more so, physically - I am so tensed up.

Can somebody advise me ? Is it true that if my adrenal glands are not working properly then I will get these symptons (above) when I take NDT?? My last TSH was 4.8 - and, guess what??? my GP said this result was fine???

Regards Ollybear

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shaws profile image
shawsAdministrator

I have looked at your Profile gillandandy but there is no medical history. Have you been diagnosed as being hypothyroid?

If we take supplements/medications we have to take them about 4 hours apart from thyroid medication.

If you haven't been diagnosed your GP is probably going to wait till your TSH is 10 and is not taking any notice of your clinical symptoms.

I know a doctor who said that our adrenals will sort themselves out when we get onto medication. Yet another, who was trained differently, says it's important to fix them first.

You are suffering at present and I think the anxiety/must be the worst. You say you are taking 2 tablets of NDT which I assume are 1 gr each - equal to about 200mcg of levothyroxine. Maybe you are a bit overdosed - depends of course if you were on levothyroxine before.

Hi, ollybear, I get the symptoms you describe. Over the last two years I've had two adrenal stress profiles done and my cortisol and DHEA are both low, my waking cortisol is 2 when it should be 12-22. All I can say is over 3 years of really high doses of a variety of thyroid meds haven't fixed it, infact my last test was lower than the first.

For a week now I've been taking 20mg of hydrocortisone. I tried all the recommended supplements for adrenal fatigue, and it still got worse.

I haven't noticed much difference yet, but I am adding DHEA @ 25mcg too.

I get so anxious it's hard for me to leave the house a lot of the time. I really hope this improves, but with low stress hormones your body can't cope with any stressors that's why you react so badly.

Booblet profile image
Booblet in reply to

Hi Helcaster,

Thanks for your reply. You state that you have only been taking 20mg hydrocotisone for one week? Would that be Prednsione? I am sure that you will start feeling better very soon. One week is a short time.

I havent had my DHEA level tested yet. Just my cortisol and ACTH - which were both low. Like you I have just started taking Prednisone, but, with Shaws' advise - I have changed my level of TSH (1 taab per day instead of 2), and feel a lot better.

Keep in touch - lets think positive - we WILL get better.

Regards

in reply to Booblet

Hi gillandandy,

Yes it's early days but what is interesting is my weight gain has stabilised. I put on a huge amount with T3 only and I'm taking 125mcg. I'm hoping to get to the stage where I can reduce my dose. I've always had to take big doses, but still have all the hypo symptoms. If I could get rid of some body pain I will be happy. I've had abnormal levels of inflammation for many years now.

Hydrocortisone is the closest steroid to the cortisol that we are short of. I've thought about prednisone, I know I tolerate it well from all the injections into joints I've had in the past. I'm thinking I may need a bigger dose than 20mcg, but just going to monitor things for a few months.

The weirdest thing is since going on T3 my skin has gotten so much worse, my feet are very cracked with the extra dryness :-(

Anxiety can be crippling, I've lost all confidence in being around people. I can't even collect my repeat prescriptions it's so bad. Just a very different person now, and that's scary!

I really hope we can both get well! Yes please let me know how you are doing.

Booblet profile image
Booblet in reply to

Hi again,

Do you suffer from exzema for any other allergies?? Ive suffered from exzema since I was 9 yrs old. I still have eczema and very dry skin (they go together), Im also VERY allergic to many things. However, what always brings allergies on - mainly my eczema is this time of year - Feb-March. It seemss to be when everything (plants ect...) are changing patterns. My skin is very dry at the moment.

Going back to hydrocortisone - Whilst my exzema was really bad, for many, many years. I was prescribed Betnovate - quite strong steroid/hydrocotisone cream. Yet too much of hydrocotisone can cause problems with Adrnal Glands??

I really do think you need a higher dose - 20mg is not a lot. You stated your cortisol and DHEA: they are VERY low indeed.

Who prescribed this medication?? Was it an Endocologist? Why Im asking is that I am so confused with different views regarding levels of Cotisol, ACTH and DHEA (not had DHEA test done yet - cant afford it!!.

MY cortisol and ACTH was low - but then the nxt test my early morning cortisol was 568??

I am just learning and trying hard to maintain all this information - but like you said with anxiety it is so hard........I know that when I do push myself Ifeel better, but, at times, I just cannot push on...

Regarding anxiety - when did you start to feel worse?? I dont know how old you are but the menopause can set of levels of anxiety. WE have got to be arogant about it - I think. Just say...B - - - - - - -S !! to it!!

Take Care,

Hi gillandandy, I have quite a history going back to a hospital infection after major surgery. After this I got chronic diarrhoea, a skinning mouth and genitals, psoriasis in my armpits and a bladder disease called interstitial cystitis. Then arthritis spread everywhere. I'm now wondering if this infection finally finished off my adrenals. Yes I know steroid therapy can mess up adrenal function, I had 5 years of inhaled steroids, steroid creams, then steroid injections into joints over a 6 year period. I remember having a week of steroids tabs at 50mg a day and not being told to wean off. All this plus untreated hypothyroidism for at least 20 years. Dr Skinner examined me and told me this, those are my suspicions too.

Straight after the hospital infection I was diagnosed with ME. I could barely get out of a chair, my knees clunked with every step, it was like trying to walk through thick porridge, and the general weakness was terrible. There were times when if there was a wheelchair to use I would use it. My joints were terrible, I was offered knee replacements in my 40's

Levothyroxine pretty much cleared the psoriasis, but not much such else. I still use prescribed stuff for my skin. I lost all my underarm and pubic hair. My GP just thinks it's funny. She did take notice of my second adrenal stress profile as it was pretty much saying the same thing only worse as the previous one a year before. This time too my DHEA was flagged as low. This combined test is around £80.

My GP prescribed 10 mg of HC, but by the third week my heart rate was up up so she took it me off it.

In July I wrote to my GP and asked her to refer me to an endo I had recommended to me. Although I had any MRI of my pituitary, my GP forgot to do the referral until the end of November, that was only because I phoned the surgery in October to ask why I hadn't heard anything. I then phoned to arrange an appointment and had a letter with the wrong doctor's name. Just before Christmas I found out the endo I wanted to go and see was leaving this hospital at the end of January, so no appointments. I've found out where this endo has moved to and it's a research post, so I need to find out if she will take patients too.

I have had a lot of stress in my life from childhood. I was on antidepressants in the 6th form. Long story, but I had terrible panic attacks when we lost our home a few years back through the previous recession. I was put on seroxat which to be honest left me a different person. Fast forward a 7 year messy divorce when my ex wouldn't cooperate with anything and I can so understand why I am in this place now.

About a month ago I felt I couldn't go on, I had fainting all through the previous year, and honestly felt like I was on the verge of collapsing, dying, I didn't know where all this would end. I have help from a lovely person on this site who has helped point me in the right direction. We have met up a few times, and it's so important to have someone doing through the same illness because let's face it if you're not struggling with this how could anyone understand?

The surgery I had was a hysterectomy and pelvic repair, I 've since read this can start hypothyroidism because of the disruption in hormones it can affect the HPA axis

When I get myself out it can go two ways, I either feel like I'm drunk and an accident waiting to happen, or on a better day I can really feel a benefit. Between bladder and the runs it's often really hard to travel, so a lot of the time it's easier to stay close to home!

Marz profile image
Marz in reply to

Am afraid I do not have adequate words of support or pearls of wisdom - but on reading your posts - I just wanted to say that I do so hope you will soon feel stronger and enjoy better health....

M x

in reply to Marz

Thanks Marz, what a moan that was. I just write to my Gp now, I can't stand going there after all this. Why don't they see how ill we are? It's a disgrace all this self medicating.

As we've all said many times, thank goodness for the support we get on this site. It's all too easy to feel totally alone with this huge burden.

Hugs. X

Marz profile image
Marz in reply to

Well at least he will hopefully observe how well you write :-)

Be kind and gentle to yourself....

M x

in reply to Marz

Yes there is that I suppose Marz. I used to send them private and confidential, now I'm glad if the reception staff see how useless she is like forgetting my referral, forgetting to test ferritin, forgetting parathyroids (which was her suggestion) and doing nothing about all the things the lab flagged. Thinking bottom of the range in iron is ok, ignoring my really low folate, saying you can overdose on B12 and not prescribing loading doses despite me sending in every possible guidelines to prove her wrong.

I know most of us are up the same brick wall :-(

Marz profile image
Marz in reply to

..but hey it must make you fell a little better to be so pro-active. Keep up the good work :-) We mostly take care of ourselves here in Greece too - looking after all our own records. Somehow easier in many ways - but every up-side has its own-side....I am bound to have missed something in my self care programme :-( - and hubby's too.....

in reply to Marz

Pro-avtive is my middle name! I don't think we have any choice. I've learnt over the years any chronic health problem has to be managed by life style changes, tablets can only do so much. Xx

Marz profile image
Marz in reply to

Yep - you are right :-) - and of course nothing happens overnight....

in reply to Marz

:-)

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