Hi All. I had thyroid removed 8 years ago, now take NDT. Was all going well but started with loads of allergies and breathlessness. It transpires I have adrenal insufficiency. The endo says when he gets the results of the tests I just had done, he'll know what dose of HC and flurinef to give me.
Initially I was happy to know what was wrong with me and to get medicated so that I can get well. Now however, I'm worried about weight gain! I know I should just concentrate on getting well but I was heavy for so long before getting proper thyroid meds I don't want to go back there!
Does this always happen?
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missmolly55
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Well, it probably happens with steroids when you don't lack them. I believe that supplementing with HC just brings you back up to normal levels and your thyroid hormone should actually work better. I have a friend who is given dexamethasone for a pituitary insufficiency and she is the tiniest thing ever.
To actually have an endo that is addressing adrenal insuffiency, short of dying, that is amazing! Enjoy and let us all know how you get along!
Levothyroxine is a synthetic T4 hormone. Natural Dessicated Thyroid is mostly made from pigs' thyroid although New Zealand makes a bovine version. Being made from animal thyroids it contains each of the hormones that humans make: T1,2,3,4, & Calcitonin.
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As this is missmolly55's thread mremeadows, it would be better for you to start your own, in order to be advised in more detail about what happens next.
The u.s. probably not i just got diagnosed by g.p. from blood test no other test like ultra sound and i was put on levo 25mg i thought maybe they would send me to a specialist hmmmm
I have adrenal insuffiency and i havent gained a mass of weight. The steroids will make you more hungry but you just need to be strict with yourself, its such a low dose of hydro cortisone that you wont gain loads of weight.
Thank you all. I'll have to see how it goes. I'm on such a limited diet because of allergies it's hard to see how I could gain weight anyway! Well...I suppose I could just eat twice as much.
I am so annoyed with the medical proffesion because of this though. They let me down with my thyroid diagnosis because my TSH was in range, by the time I asked for an MRI it was too late and needed to be removed. Now with my adrenals, I've been backwards and forward to the docs, they've put me on a heart moniter for a week, they sent me to an allergy specialist. Why didn't someone think it might be adrenals given my thyroid problems? Once I stumbled accross the problem I knew straight away that's what I had. According to the doc, I'm quite far down the line of adrenal insufficiency, he suspects addisons. Maybe if it had of been found earlier?...Yep, let down once more.
On the plus though, I have an excellent endo. If anyone needs one in the SE of uk, let me know!
You are very lucky to have a good Endo who actually listens and seems to be knowledgeable about Thyroid issues. My daughter has been diagnosed with an under active thyroid 10 years ago for which she has been prescribed T4 only and, after getting progressively worse over the years, had to pay for a blood test privately as the GP refused, and her antibodies are over 800. Endo refused to see her and wrote to GP to state that she now has Hashimoto's and second Endo referral was equally unproductive as this one is totally against prescribing T3 and expressed her disdain for Patient Pressure groups because it puts pressure on clinicians to provide treatment they do not agree with.
The thyroid testing and treatment in the UK has an appalling record and, as I said, you are very fortunate in your Endo and it is reassuring that there are still some clinicians who buck the orthodox and out dated thinking of mainstream clinicians.
Thank you. I am astounded at the lack of knowledge the doctors have. My poor mother suffered dreadfully too. How and when is it all going to change I wonder. I've only just found this Endo that knows his stuff. I will be keeping him though!
my antib's were over 2000 when i was re-diag. in 6 years developed myxedema, macular degeneration etc. the latest round has affected my heart and lungs and the sudden weight gain has meant feet so painful i know have special inserts for my shoes. i suspect adrenals now, possbly addisons
all this by medical professionals. you couldnt make it up. where they saved money for the nhs is a mystery...
I take steroids for Addison’s and did put some weight on, some I needed, some I didn’t
My steroid intake hasn’t changed but my thyroid replacement has (as I’ve learnt more about the whole thyroid thing)
Now, a year on from ‘taking control and understanding my health’ I’m half a stone from my ideal weight
I am in the south, West Sussex, and would love to know who your endocrinologist is, could you pm me when you have a chance, thank you
Hi I also have secondary adrenal insufficiency due to a pituitary tumour which caused Cushing's disease the complete opposite of SAI, but but the tumour has been removed I need to take replacement steroids, as they are replacement you may put on some weight but not too much because that could mean you are taking too many. It sounds like your Endo is treating you for primary AI as us secondaries don't need Floucortisone as my adrenal works it's my pituitary which doesn't. Have a look at the Addisons website for more information & if you are on FB then look at the UK Addisons info & support group - there's some very knowledgeable people on there. I'd love to know who your Endo is too as I'm in the south & have just changed hospitals to get better care!
ps - i don't get ever so hungry on my Hydrocortisone!
I'm another with AI, I haven't put any weight on with sreroids. I eat low carb paleo. As somebody said above, join the Addisons group on FB, they will help x
I take an adrenal supplement whch i buy. made me feel like a human being again. sometimes f i have an infection or am particulaly stressed i need to increase the dose. weight gain not attributed to this i dont think
I had an adrenal saliva test. Then was recommended NutriAdrenal made by Nutriadvanced. Whn these became unobtainable for a while I was advised to try Adrenavive II made by Procepts
How are you getting on on the Adrenavive ll ? I am going down that root soon I'm just reducing my Levo first .then trying the adrenal support then NDT . I hope you are doing well and will you keep me posted Thanks Kazbe x
How long did it take to get these into your system and did you reduce your Thyroxine first ? I'm new to all of this been to see Dr P and I'm starting Adrenavive ll first for 3 weeks, I'm a bit nervous starting something new ! I'm so glad you are doing well I'm looking forward to my health improving too take care Kazbe
i didn't reduce the thyroxine. i started to feel more 'human' very quckly. stopped fallng asleep a lot and got my interest in life back. my gp was giving me the thyrxine, but another doctor told me to monitor my base temperature and pulse rate and they seeme ok. there s a very good book by dr barry peatfield if you can find it
Thankyou Claire for your response and encouragement I've started mine today so I'm hoping for some improvements and my Mum bought me Dr Peatfield Book so I'm all good to go ! Here's hoping the new year will bring us much better health Kazbe 😀
it was dr Peatfield who recommended the saliva test but i can get them done myself at Medicheck. Last showed a rise at.night time only. I hope you get to see dr Peatfield
Did you have any problem trying to raise ndt with tour adrenals?
I was on hydracortisol for 2 or 3 months.... still was great and my doctor swithched me over to deltracortisol at 5 mgs....i look a little brighter but still not able to tolerate raising nature throid.
I always these things happen like you have, when I had a reaction to the fillers in the medication! Sometimes you go over snd over changing meds and strengths and ignore the fillers who just might be the culprits after all! Good Luck!
Wow..I missed most of these somehow. To those who wanted the name of my Endo, he is Dr Sunil Zachariah and he works out of the Montefiore Hospital in Brighton.
As it transpires, I did put weight on initially. My appetite increased enormously. It seems to have settled now though. Feeling much better as well.
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