Addisons/NDT

[auldreekie]

Does anyone have further information on results of replacement thyroid hormone on Addisons. I ask because I have low bp low heart rate and kidney filtration rate isn't good, and I am more a more exhausted. I notice worsensing symptoms since changing to NDT and wonder if there is a connection. I suspect B12 deficiency too.

[PinkNinja]

Sometimes changing to NDT or T3 can reveal other issues, such as adrenal insufficiency, low iron or even low B12. I'm not sure about patients with Addison's disease specifically though.

If you suspect a B12 deficiency I would definitely recommend getting this tested. Normally I would say supplement anyway but if your kidneys aren't too hot at the moment I'm not sure what the implications would be.

Low bp and heart rate do suggest adrenal insufficiency. I'm not quite sure of the exact mechanism, but I do know that when people start with NDT they quite often feel fatigue due to their already tired adrenals suddenly being under strain.

You might be interested to look into Paul Robinson's circadian T3 method where you take your T3 or NDT 1.5 - 4 hours before you would normally get up (starting with 1.5 hours before). The theory is that your adrenals need T3 to make cortisol and your adrenals produce most of the day's cortisol in the 4 hours before getting up so it makes sense to take some T3 during this time. This seems to help some people with their adrenal recovery.

If I find out anything else I will let you know

Carolyn x

[auldreekie]

Hi Carolyn, thanks so much for your reply.I have been on the B12 trail, and have been tested at Guys for active B12 (results through next week). I started with NDT last year (on thyroxene for 7 years prior to that), the fatigue has hit me hard. I was looking back at Addisons discussions here that someone alluded to the NDT connection.

The GP didn't even mention the GFR but a nurse friend of mine did. She said my liver and kidney functions tests look like those of an elderly person (I'm 58!).

I have seen Paul Robinsons, ideas I'll read a bit more.

thanks again

Isabel

[Jackie]

Hi In my own case ,I have end stage heart failure, etc etc and severe kidney disease with 2 episodes of total reanal failure. I have taken armour ( Erfa , at times ) for many years. I now take Armour + T3 ,since it became available. however, I do have 6 weekly thyroid tests and the Endo and I ( as cardio `s` say), make sure my thyroid is only treated enough for me to feel I need. Unfortunately for me this means very low TSH , FT3 just under top of range and T4 just in top half of range., I have known and been treated by many cardio`s over the years,they all say that it is important to treat the thyroid but just enough.

Jackie

[auldreekie]

Jackie, do your doctors know you are on Efra/Armour? My endo left me a whole year without TFTs! I am waiting for a whole bunch of tests now.

Did / do you feel completely exhausted all of the time?

Isabel

[carorueil]

My doctor told me I've cortisol insufficiency.... I've been on NDT for almost two years... Felt great for the first year, and then one trip lack of sleep and everything went out of sync.... Still trying to get things balanced - have increased both meds for thyroid and adrenals....At my worst i.e. this time last year after the relapse, my heartbeat was 85/55...and it took a few months to get it up to 100/70.... But I've been taking B12 since last summer and I think that helps along with all the other tons of supplements/vitamins I'm taking too....

I get the impression it's not easy - I've signed up to the Addisons website - and got quite of information there...but my sense is that the advice is quite classical...... when I mentioned what I was on, I got some comments which weren't so nice.... From what I've read and from what my doctor says, every person's body responds differently - hence the problem.... good luck and more importantly good health... I know what it's like to be exhausted all the time.... last week I managed 3 days of doing things (quite basic) and felt great... and then crashed.... so it's a fine line between rejoicing in new re-found energy and not getting too carried away! C

[auldreekie]

Jackie, you've had it rough, I hope things at present are better.

Carorueil, I am surprised a doctor even considered cortisol, In my experience if you haven't got Addisons confirmed diagnosis no one bothers with adrenal glands!

We those bp numbers your 'resting rate?

I have read that T3 is trough on muscle (body builders won't use it) I am concerned the T3 in NDT isn't good for the heart ...

Is there a doctor in the house!!!

Do you get nausea with the exhaustion?

Isabel

[tiredandemotional]

I don't know if this will help, but when I originally saw Dr P in 2000 I was 45 years old with a diagnosis of ME which I had had for 26 years and an inability of my body to convert T4 to T3 and IBS both of which had been diagnosed 15 years earlier.

When Dr P examined me my blood pressure was 65/40, my pulse was 40 and my body temp less than 35 and I had only one reflex action, my right ankle. Dr P said I should be dead as my vital signs were so low, and he said my adrenals were very stressed and started me on 5mg of Hydrocortisone and after a week to introduce Armour thyroid.

I felt wonderful, I had energy, the weight fell of me, I was becoming human again. But my vital signs would not improve, slowly my dose of hydrocortisone was increased upto 40mg per day, still no improvement in my vital signs but weight starting to pile on and my skin looked waterlogged.

Then the witch hunt of Dr P began, he could not see patients while he was under investigation, and I started to see the useless endo's at Barts. They brought me off the H'cortisone even though all my test results were at the bottom of the normal range and I felt so ill. I was confined to my bed and doing all this at home on my own.

Then they tried to get me off thyroid medication. This I was unable to do as all symptoms of hypothyroidism returned and after much battling was put on Eltroxin (Levo) and back on my T3.

Had all the signs of serious Adrenal fatigue, but could not get them to put me back on H'cortisone. At one point my cortisol levels were 113, death occurs at 109!!! My skin had gone very dark, a possible sign of Addisons, adrenal failure. I was then tested for D3 and found to be very deficient and given 300,000 injection. Still feeling awful, still low cortisol levels, D3 levels drop very quickly, no one seems to know why. Then my eye disease returns after more than 32 years, normally only happens if you have MS, Lupus or Rheumatoid Arthritis, had no blood markers for any of them, have now found out that you do not always have the blood markers even if you have the disease.

I plead with my GP to put me back on very mild dose of H'cortisone (2.5mg) and she agrees.

I can't get the inflammation to go down so the dose is slowly increased with Moorfields Eye Hospital and Barts agreement. Nothing can get the inflammation to go down, the dose finally goes upto 160mg H'cortisone.

I have all the signs of Cushings but my body temp, blood pressure and pulse have finally gone up, and I have loads of energy but sadly loads of side effects. Am put on chemo (an immunosuppressive) to reduce infammation, it does not work. Have terrible side effects that none of the Dr's recognise, I cannot take generic medicines as my system is too sensitive.

Began to reduce the H'cortisone very slowly myself, (endo's at Barts wont do blood tests as I am on high level of H'cortisone and taking Armour), but endo tells me they have some patients on 80mg instead of the normal 20mg H'cortisone for Addisons. These endo's do realise that people need different levels of medication but will rarely admit it. It is such a battle to get the correct treatment/medication.

If one of your hormones is not working properly there are going to be problems with other hormones as Dr P says in his work on the Pituitary/Adrenal/Thyroid axis. Unfortunately most endos do not seem to look at this.

I had been on 80mg H'cortisone for over 1 year and have just started to reduce it. I am now on 75mg and taking it very slowly will reduce by 2.5mg every 3/4 weeks and see how I go. Am currently taking 1.5 grains of ADT and 30mcg T3 in divided doses. I am monitoring my vital signs, state of nails, hair, skin, eyelashes etc and hoping one day to turn back into a human being. I hope this will help, I firmly believe that the adrenals and thyroid go hand in hand and need to be treated together.

Thanks for reading.