Thyroid and Adrenal glands: Hi I wonder if anyone... - Thyroid UK

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Thyroid and Adrenal glands

jayjayjules
jayjayjules

Hi I wonder if anyone can give advise ive had thyroid problems for years it was under active i then went to over active but ive now been taken off all meds i went to my GP as i started to feel so unwell again ref to endo who i can honestly say i have no confidence in at all, ive been under him a few months now my TSH levels are 0.07 but my T3 and T4 are in normal range ive had a couple of ultra sounds on my neck and been told i have a large goitre in the right lobe over the past couple of months he just keeps doing blood tests and said my cortisols are low i think im right in thinking thats my adrenal glands they are 120 normal range 185 to 600 im putting on weight i feel constantly hungry i feel so depressed and pains in my legs some days i can sleep for hours others i cant sleep at all i feel im going mad or that my endo does not beleive how rough i feel all he keeps saying is well your results are not that bad ive seen worse, i dont even want to go back to him now i would rather try and do something myself but i dont know what

24 Replies
oldestnewest

I’m very sorry to hear what you have and are still going through.

Has your Endocrinologist done a synacthen test. If not I think you should request one.

jayjayjules
jayjayjules in reply to McPammy

Im just in the hospital now having it done so will keep you posted thank you for replying

McPammy
McPammy in reply to jayjayjules

Oh good. I do hope you manage to pass. Have they also checked your ACTH. I past my synacthen test. However, my ACTH was very low at 0.5 (range 2-11). This meant my adrenals are working fine but the signal from my hypothalamus was very weak causing low cortisol to be released.

Have you, or are you on any steroids like inhalers or anything for your skin etc. This could effect your cortisol production.

jayjayjules
jayjayjules in reply to McPammy

how long did you wait to see if you passed, im only on metformin for type 2 diabetes nothing else, what did they give you if the signal from your hypothalamus was very week

Hi there - I am so sorry you are suffering so - as an Adrenal Patient (Addison's brought about by steroid medication not disease of the gland) I would say from your symptoms your adrenal glands are running low - in fact having just re-read your post 120 is obviously low. This is something that needs attention - as it is vital that your adrenal glands are up to speed for illness etc. - having just attended a talk with a Professor Wass who is involved with ADSHG (Adrenal Disease Self Help Group) - I suggest you go on their site and discuss with them as they can help with advice - it is often found that when the thyroid is sorted out with medication it highlights an adrenal dysfunction. Please get help as this is not something you have to put up with - you can feel well again. You would have to take a steroid if it s found that you are low on cortisol but you are only putting back what the gland cannot produce. Hope this helps.

Thank you for the reply I will look atADSHG I feel that people think this is in my head how rough I feel but then I have days I don’t feel too bad

Oh no please don't feel bad about feeling bad so to speak. I know what it is like - I was completely coma like most of the day and couldn't even shower - I would get up have breakfast and then go on settee all day unable to do anything - it is an exhaustion that is second to none unless you have experienced it. Put it this way if someone had come to my door saying you have won the lottery I would have gone Oh really and gone back to sleep. The reason you don't feel too bad some days can even be the food you eat might be helping the adrenals - try taking some vitamin C which is very important for them - 1,000 mg if you can - not many people realise that the adrenal glands need Vitamin C to function and they will drag it from the rest of the body - skin etc. to keep you going - so try to help them along if you can. Let me know how you get on.

Thank you im going straight out to get Vit C. I know what you mean about the lottery i would be the same ha ha

Hi there - sorry have just re-read your post (again !) you have been taken OFF all meds - then it is a possible cause of your symptoms - your adrenal glands are supporting your body because in my opinion you do not have enough thyroid hormone or have been abruptly stopped the medication. . Can I just add - the pains in your legs are adrenal gland related - the appetite issues - you feeling exhausted and sleepy and then again can't sleep all adrenal glands issues I have experienced. PLEASE get help from someone who actually know what they are doing - ADSHG will be able to guide you too.

Thank you for replying it’s nice to know somebody else has experienced this and it’s not in my head

Hidden
Hidden in reply to posthinking01

Trouble is, those can also be thyroid symptoms. That's what makes it all so complicated isn't it!

posthinking01
posthinking01 in reply to Hidden

Hi there - agree up to a point but the exhaustion of adrenal dysfunction is second to none believe me - you feel like you are dying because actually you are theoretically - the body needs cortisol to stay alive and if one does not have enough it can be dangerous in some instances particularly illness.

Hidden
Hidden in reply to posthinking01

Being hypothyroid is also a bit like that. For me the worst, before starting Levo it wasn't so much exhaustion but inability to think due to lack of mental energy. My limbs worked but the concentration needed to think about it and then get them to actually work made it almost impossible to function!

And remembering what to do and how to do it made something like making a cup of tea (if I could gee myself up to get off the settee) a major operation

posthinking01
posthinking01 in reply to Hidden

Agree I have had both - low thyroid with over 100 of the symptoms listed and then Lupus on top of that which went into remission once the thyroid was given the missing hormone it needed and then the low adrenal function. A horrible combination of dysfunctional states.

Hidden
Hidden in reply to posthinking01

Poor you :-(

I did feel like I was slowly dying too. I have never felt so weak or unable to function in all my life. I couldn’t walk 10 steps. Clinging to walls and door frames to get from room to room. Sometimes collapsing and absolutely unable to get myself off the floor, like a dead weight. My partner would literally roll me onto a rug to get me to the front door, then get a neighbour to put my in the car to take me to A&E. Each time there, even though cortisol was too low, they wouldn’t listen to me. It was the most frightening time of our lives. The very fact that you are in hospital unable to walk and they just sent me home. They thought it was in my mind!!! Why on earth would one behave like that. I had a full time job and all I wanted was to be able to function and return to work and normality. After 15 months of this I finally got T3 medication privately. It was like a miracle. I could walk normally. My arms worked. No more having to lay flat all day. It makes me mad that Drs wouldn’t or couldn’t help people like us.

justinhd
justinhd in reply to McPammy

I know how that feels and going the self medication of T3. Drs just hopeless

Hello jayjayjules

I am with Graves Disease diagnosed 2003 and RAI 2005 which I deeply regret.

I believe I was undiagnosed hypo for many years prior to being assaulted by a fellow work colleague. I believe this frightening, unexpected episode triggered my Graves Disease.

Having read your back story, I see similarities, but I'm not medically qualified - just looking for answers, as we all are. Though I'm learning back to front, if that makes sense.

Have you had your thyroid antibodies tested ?

The endocrinologists would have run these tests, I would think, if your doctor did not.

It's a process of elimination but at least you would know if you have the Graves and or possibly the Hashimoto's antibodies, and then know what you dealing with.

The thyroid and adrenals are supportive of each, and my understanding is that as your thyroid struggles the more your adrenals work to redress the imbalance.

It's also essential that your ferritin, folate, B12 and vitamin D are optimal as thyroid hormone conversion, either your own or that supplemented, can be compromised it these important core strength building blocks are not stable and at good levels.

I bet your endo is a diabetes specialist and is completely out of his depth! He needs a firm hand to guide him.

First of all, do you have print-outs of your results. If not, ask for them. If you live in the UK, it is your legal right to have them. You need to know exactly what was tested and what your results are - post them here, with ranges. The FT4/3 just being in the so-called 'normal' range is meaningless, and is your TSH.

When you say you were hypo and then went hyper, what exactly do you mean? Because physically, it isn't possible to pass from hypo to hyper. So, were you a) over-medicated b) have Hashi's? Have you ever had your antibodies tested?

What medication were you on when your endo took you off them? Why did he do that? And, by the way, we really don't care about his opinion on your results, he obviously has no idea what he's talking about.

If you are constantly hungry, you more than likely have nutritional deficiencies - which isn't unusual when hypo. So, have you had your vit D, vit B12, folate and ferritin tested? If not, ask your endo to test them. They all need to be optimal for your body to use thyroid hormone optimally.

If your endo won't do all the necessary tests, are you in a position to do them privately?

Thank you for replying when i said i was hypo i was on .75 thyroxine the doctor then said i had to much and stopped it i had been on it for app 20 years i felt ok at first then after about six weeks i felt so rough i went back to my doctor who ref me to an endo and your right he is a diabetes specialist he then put me on 10 mg of carbomazasol im not sure if that is how you spell it i still did not feel great so i went back to him and he told me to come off of it and see how i feel that was about 8 months ago, ive been back to my doctor who once again ref me the endo sent me for a technetium pertechnetate scan which said on both the right and left lobes of the thyroid gland are enlarged and nodular the right being the larger both showing alternating areas of hypo and hyper activity the largest area of low radioactivity is within the right lobe, the appearance of multi nodular goitre with a large adenoma within the right lobe. He then sent me for another blood test which was TSH 0.07 RANGE 03-05 FREE T4 9.2 RANGE 7.9-16.0 FREE T3 5.8 RANGE 3.6-6.0 he also tested CORTISOL 145 RANGE 185-624 i know i have looked on this forum and peoples readings are a lot worst than mine but i do feel so rough, today he sent me for a synacthen test so not had results yet, i feel bad moaning about him now cos at least he is sending me for scan and blood tests but i feel ive been saying for months how bad i feel and all he says is yes some things are a bit low and he is not doing anything about it, i dont think ive had vit d or ferritin or b12 done i would be able to pay for these myself.

Well, you're not hyper now, that's for sure. But, you don't appear to be hypo, either, even though your FT4 is a bit low. So, I don't really know what you could do about it yourself.

You could, of course, get your nutrients tested yourself, and supplement where necessary. But, I wouldn't abandon your endo just yet, until you get all your test results. And, should you need HydroCortisol due to adrenal insufficiency, I think he's the only one that can prescribe it.

Hidden
Hidden

I was going to post a question whether I might have adrenal problems as well as Hashi's!

Maybe will do that as well, as my doctor, even after the information I gave him, may still think there is something else going on besides hypothyroidism. (See a previous thread - he actually listened and asked for information).

And it's possible he may be right.

One problem is the adrenals are a complex of glands and I assume symptoms vary depending on which part is affected.

Go to UCLA endo

im sorry what is a UCLA endo and how do you refer yourself to one

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