Dismissive endo appointment and letter - Thyroid UK

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Dismissive endo appointment and letter

cc120 profile image
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Saw Dr G C at UCH, who is on Louises' good endos list, but I found him impatient (kept interrupting when I tried to explain my health history) and very dismissive of possibility of inflammation causing any problems. Any advice much appreciated.

For previous test results, please see: healthunlocked.com/thyroidu....

Please see latest test results: healthunlocked.com/thyroidu...

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cc120 profile image
cc120
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88 Replies
Clutter profile image
Clutter

CC, I'm sorry the endo consultation didn't go as you wanted. I struggled to read the letter and can't read the results at all but it seems reasonable even though the endo has ruled out inflammation and thyroid problems (other than overmedication) as the cause of your continuing symptoms. The referral to the integrative medicine hospital sounds positive and a holistic approach may be more helpful.

cc120 profile image
cc120 in reply to Clutter

Hi Clutter, thank you, yes will have to do the best I can with the intergated lot. Any tips on how to post large enough to read but small enough to post?

Clutter profile image
Clutter in reply to cc120

CC, sorry, you're talking to techno dunce here.

cc120 profile image
cc120 in reply to Clutter

Hi Clutter, as you can see from his letter, he thinks I have been medicated with thyroxine for the last 10 year. Because he didn't let me explain and didn't understand my clear written information left with him, he hadn't taken in that I haven't been medicated at all for hypothyroid until I medicated myself starting from late last year 2014,

Clutter profile image
Clutter in reply to cc120

CC, ok the inaccuracy is annoying and I can see why you are irritated.

As you've only been self medicating since late 2014, I think you may find more improvement when your levels are right which will be FT4 and FT3 towards or in the top 75% of range, don't worry about TSH being suppressed. It took several weeks after my bloods were good before I began to feel good. Overmedication can cause pain and fatigue, witness how bad hyperthyroid patients feel.

Supplementing to improve low vitamin levels will help your general wellbeing whatever the endo says. They really aren't very clever about nutrition and vitamins.

Having ESR and ferritin over range can indicate inflammation in the body and this can be due to virus, autoimmune disease, low grade illness but its usually high CRP + high ESR + high ferritin + other results that indicate there may be a problem. One or two slightly elevated results aren't necessarily significant.

cc120 profile image
cc120 in reply to Clutter

Thank you Clutter. Because he wouldn't let me speak, I couldn't explain that I supplemented vits before starting NDT to ensure T4 to T3 conversion, and took it in his head that I meant, been adjusting all over the 10 years to see if they helped.

So regarding my elevated levels CRP within range, ESR slightly over range and VERY high ferritin (which he didn't even acknowledge), could there be a problem? In what area?

I so find that eating too many sugary things can make me slump, doubtless blood sugar going from low, to too high, to low again?

Clutter profile image
Clutter in reply to cc120

CC, If CRP is within range I'd stop worrying about it and the slightly elevated ESR. Last year my ferritin was also more than 100 over range but GP wasn't concerned. I was very unwell at the time, vitD and folate deficient and experiencing significant fibro pain as thyroid meds weren't right so I think that explained the high ferritin. Ferritin rises as a protective mechanism too, to starve bacteria and viruses of food. I'm no longer in pain but haven't bothered to follow up ferritin testing, not that the GP suggested I should. When medics are concerned about elevated blood results they're often only concerned when they are 10 times or 100 times over range or when a whole bunch of results are out of whack.

Perhaps cutting out sugar for a while to see whether symptoms improve might be an idea? A lot of members say fatigue decreases and energy levels improve when they cut out sugar.

cc120 profile image
cc120 in reply to Clutter

Hi Clutter, thank you. I will cut out/cut down sugar. My iron levels refuse to budge, ie storing instead, would I feel better with higher iron levels?

Clutter profile image
Clutter in reply to cc120

CC, I'm not good on iron but I don't see how supplementing iron can be good when ferritin is high.

health-matrix.net/2013/07/0...

irondisorders.org/anemia-of...

cc120 profile image
cc120 in reply to Clutter

Hi Clutter, just to clarify my iron was 15 (6-150), ferritin 36 (13-150) Jan 2014. After supplementing with 210mg ferrous fumarate, iron decreased to 12 and ferritin increased to 250.

cc120 profile image
cc120 in reply to cc120

Just randomly, how would I know if I had a MTHFR genetic defect, or thyroid hormone resistance?

If FT3 high, and still experiencing fatigue etc, could there be a problem at cellular level?

cc120 profile image
cc120 in reply to cc120

PS, from the endo letter, would you say that I have been officially diagnosed as having hypothyroidism?

gabkad profile image
gabkad in reply to cc120

cc, do you have arthritis or something like that?

I think the endo's opinion is you don't have anything wrong with you and are experimenting with all sorts of stuff to no end. That's my impression anyway.

You vitamin D is super high too. You need to stop taking this for a few months to get the level down. How much have you been taking? It's really wow. Mine went to 93 with 50,000 IU per week for a month. At least your calcium is normal.

If your ferritin is high from supplements, stop taking them for a few months and then take a lot less.

You ESR and platelets indicate some sort of inflammatory problem which is why I'm asking about arthritis. Your C reactive protein is okay so it's not a gut problem. Given how well you absorb supplements, this proves it.

cc120 profile image
cc120 in reply to gabkad

Hi gabkad, that was the impression I got, but he seemed to have made his mind up before speaking to me and considering further info. For instance, he assumed I was on thyroxine for 10 years and had then experimented with vits for that period also. In fact, I had not been medicated until self-medication starting mid last year, starting with vits to raise levels, to ensure convert T4 to T3, WHEN I started NDT, end of last year.

Interesting that the C reactive protein would have pointed at gut problem.

I don't think I have arthritis, no pain in joints, only in back that has been damaged. Thank you for pointing out high Vit d, will stop this, and save myself some money too.

Someone suggested I might have candida?

gabkad profile image
gabkad in reply to cc120

and iron too if you are taking it.

cc120 profile image
cc120 in reply to gabkad

Can't seem to increase iron levels, after supplementing with 210mg ferous fumerate for a few months, iron went from 15 to 12, (6-26) but ferritin rocketed from 36 to 250 (13-150).

Spareribs profile image
Spareribs in reply to cc120

Vit C helps iron absorption apparently, but ferritin is the storage iron - & can be high with inflammation issues.

If unsure lay off supplementing - I tend to eat meat & green veg so no probs (so far anyway).

Had liver & onion gravy tonight with carrot & snarspip mash & a little cabbage. Annoyingly (but as usual of late) after cooking I could only down a few mouthfuls... drat...

wouldn't mind if I lost weight!

cc120 profile image
cc120 in reply to Spareribs

Hi Sparerib, I supplemented with both iron and vit c and have slightly high ESR readings, signifying inflammation. Endo not at all concerned or interested.

Pity I wasn't there to help polish off your meal : )

Spareribs profile image
Spareribs in reply to cc120

I would gladly have kept you some!

The cat was very happy to help 'tho :D

I thought that letter was very condescending, then I thought you were lucky to have seen it, then I thought I'd read it again with a different eye.. to check I hadn't got the wrong end of the stick - so I don't know!

cc120 profile image
cc120 in reply to Spareribs

The general consensus is that the letter is condescending. On Louise's good nhs endos list, so obviously was helpful to others, maybe he just didn't like me. I'm beginning to believe that 'they' only help who they like?!?!

Spareribs profile image
Spareribs in reply to cc120

The first time I went to a consultant (not Thyroid but extra ribs related) I managed to get a copy of the letter to my GP (& was referred to another surgeon, scalpel-in-hand... )

- it said 'this pleasant lady' - to this day I swear this is doc code for a naive idiot!

J :D

cc120 profile image
cc120 in reply to Spareribs

Haha, I wonder what other codes they have. The mention of 'alternative medicine' seems to smack of, she's hairy fairy. I didn't know it was in alternate medicine that some people didn't convert T4 to T3, but medical fact.

Feritin at 100 over range, is slightly raised according to him. He got his facts wrong because he didn't listen to me, so supposed that I've been on thyroxine for 10 years, when I only started NDT towards end of last year. He thinks I switched from thyroxine prescribed by GP to NDT because it contains T3. He seemed to have formed his opinions before I opened my mouth.

cc120 profile image
cc120 in reply to Clutter

Posted a clearer version now : )

Heloise profile image
Heloise in reply to Clutter

Clutter, try holding down the control key and keep tapping the + key. To reduce use the - key.

Clutter profile image
Clutter in reply to Heloise

Heloise, I enlarged until the print got fuzzy and sort of bled out but I still couldn't read it until CC reposted it.

Heloise profile image
Heloise in reply to Clutter

Sorry, Clutter, I should have figured you knew that. How about the "accessories" program and accessabilities at the top of menu. You have a built in magnifier there.

cc120 profile image
cc120

Thank you reallyfedup123. Trying to upload a readable letter.

PR4NOW profile image
PR4NOW

Interesting, on the one hand he says, "I think there is a danger for someone who is very numerically oriented to pursue mild anomalies on blood testing in the hope of improving well-being." Then ends the letter with, "From the thyroid point of view, I have encouraged her to reduce the dose of her thyroid replacement therapy with the goal of achieving a normal FT4." Isn't that exactly what he is doing, pursuing mild anomalies?

To me the important aspect is you said you had symptoms of over medication which is a good sign to reduce dose. I hope the integrative medicine hospital will help. PR

faith63 profile image
faith63 in reply to PR4NOW

He also says the goal is all about the f t4 level and checking the ft3 is pointless, because ft4 and ft3 ALWAYS work in parelle!! He is nuts!

cc120 profile image
cc120 in reply to faith63

I think he means in my case, as it was proven that I'm converting T4 to T3, but certainly even so, there is a possibility of variation. But generally he wasn't very helpful.

cc120 profile image
cc120

Thank you PR4NOW, he seemed to have a set opinion before I even spoke to him or showed him symptoms and previous results. Didn't understand that I had been hypothyroid for over 7 years without any diagnosis or medication as he kept interrupting me and didn't understand info I left him. What kind of diagnosis can Integrated Medicine hospital make?

PR4NOW profile image
PR4NOW in reply to cc120

It is a balancing act, hopefully they might be able to help with that. Have you ever done an RT3 test? If it is high then T3 only might be a course of action. Usually that is the last choice because it is the most difficult dosing, 3-5 times a day for most. Dr. Myhill does have that mitochondrial test to check their function. With the limited testing available it can be tricky trying to determine the underlying condition, if one exists. As Clutter said getting rid of sugar can help. Also getting off most processed food can make a difference. As for thyroid hormone resistance about the only way to determine is based on how you react to dosing. I think I've mentioned before that my FT3 is over the top of the range and yet I've never had any hyper symptoms. For me that is just what it takes and the thyroid function tests are worthless, they don't relate to what is happening in my body at all. Keep at it. PR

cc120 profile image
cc120 in reply to PR4NOW

Hi PR4NOW, thank you. Well Dr GC didn't suggest an RT3 test to determine why I have symptoms. You would have thought he would suggest it when I asked is there anything else that could be checked. I did ask previously on the forum if he should have, and was told that RT3 rectifies itself quickly after decrease of NDT. I did have hyper symptoms, heart racing at times, wired.

I keep meaning to improve eating habits, but also trying to become vegetarian, I suppose should do one, then the other.

gabkad profile image
gabkad in reply to cc120

cc, improve you eating habits but don't go veg. It seems from around here that vegetarians have a harder time.

cc120 profile image
cc120 in reply to gabkad

Hi gabkad, the idea is that I will have fish, all dairy inc cheese (I know they use derivative of cows stomach for this), probably chicken for awhile. That's the idea, whether I manage to do this is another matter. But certainly don't intend to go veggie : )

gabkad profile image
gabkad in reply to cc120

Eggs too.

cc120 profile image
cc120 in reply to gabkad

Yes, definitely eggs.

BeansMummy profile image
BeansMummy in reply to cc120

Vegetarian cheese doesn't have animal rennet in it, just for info!

cc120 profile image
cc120 in reply to BeansMummy

Yes, I know but usually more expensive and not as nice : ) Might move onto in time.

BeansMummy profile image
BeansMummy in reply to cc120

I do mean vegetarian cheese, not vegan cheese (which is rank!) It really is very difficult to tell the difference in taste - I'm a strict vegetarian and my other half is a total carnivore, and he wouldn't eat something if it didn't taste good.

A lot of cheese sold now is vegetarian anyway, most people tend not to read the labels unless it is important to them.

cc120 profile image
cc120 in reply to BeansMummy

Thank you BeansMummy, as I have only had regular cheese for years, I didn't know vegetarian cheese was good now. Is it difficult with you both having such different diets?

BeansMummy profile image
BeansMummy in reply to cc120

It's all his own fault, I was a veggie for many years before we met (which was a very very long time ago) and he decided he could cope!

He is now having to put up with the gluten-free diet I have been on for several months as well but, thankfully, is very supportive. He is happy to eat a lot of the same stuff that I do, but we will sometimes do two different meals. If I struggle with gluten-free pasta, I'm not going to make him eat that too.

Have you read the wrappers on your cheese yet? You might be eating veggie cheese already!

cc120 profile image
cc120 in reply to BeansMummy

It seems to me that he was lucky to marry a vegetarian, otherwise his diet would have been a lot less healthy over the years. Good of you to allow him to eat meat at times.

I doubt if I have veggie cheese (non in to check), normally buy cheapest cheddar, sometimes some brie.

Spareribs profile image
Spareribs in reply to cc120

Brie.... my pretty boring cheese & the rind is a pain to remove so I don't.... wait.... google says eat it! (Penicillium Camembert) - it has K2 (sorts out calcium with Vit D/A Mg) - someone said Gouda & St Agur has the same strain of bacteria... nom nom blessed are the cheesemakers....

(I sadly avoid olives & feta as that's 'modified rennet' whatever that is...) and buy my olives separately.... (I wish Marz would send me real olives for comparison!) J :D

cc120 profile image
cc120 in reply to Spareribs

I love brie, but the rind is annoying. Sorry I couldn't eat it even if it is edible.

I like to try all different cheeses but will gradually go veggie, I hope. Love olives, but not stuffed ones and feta, being Greek I would ; ) Is Marz abroad?

Spareribs profile image
Spareribs in reply to cc120

Marz is in Crete, the ratbag... she has olive trees.. bigger ratbag...

Please don't go veggie, your stomach bugs aren't veggie and need meat to help your digestion - have you seen MIB when he opens the locker door?

cc120 profile image
cc120 in reply to Spareribs

Lucky Marz, but the sun can be aging of course ; ).

Well it will probably take awhile for me to go completely veggie, but in the first instance need to improve diet generally. And will always eat fish, dairy.

Spareribs profile image
Spareribs in reply to cc120

Ah ageing... the alternative is not getting to a decent age? (three score & 10) our guidelines are based on Oz - but we don't have their sun! it's crazy... Ask any MacMillan nurse about Vit D ...

& It's not the med diet - it's the sun!, underlying all other crap... pls don't stop those Vit D tabs! IMHO of course....

cc120 profile image
cc120 in reply to Spareribs

Aging face but young body in hot sunny climes. Good to achieve over 70 but only if in quite good health.

Believe it or not my vit D is over range so have to stop supplementing.

But sure is lovely in the sun, cheers you up on your saddest days.

Spareribs profile image
Spareribs in reply to cc120

I read somewhere (I tend to read a lot!) no need to expose face & hands any more - just the rest for 20 mins daily in sparse UK summer - I confess I have to be wary of my neck - it burns quicker than anywhere else & looks goosey-like since my op ... bikini with scarf is a strange look - but who cares!

(I supplement winter, chase sun summer)

Vit D is ideally over 125 nmol/L -that's when it starts getting stored in fat for winter. Grassroots site is very interesting.

Good luck! J - apologies zonked now zzzz

cc120 profile image
cc120 in reply to Spareribs

My vit d is 195 (25-120) healthunlocked.com/thyroidu...

Could you just use a sun block on your neck. Though the scarf idea is fine, just wondered if would be easier that way.

Which Grass roots site? Take care xx

Spareribs profile image
Spareribs in reply to cc120

grassrootshealth.net/

40-60 ng/ml is 100-150 nmol/L - I haven't heard of anyone going toxic, best test regularly 'tho....

I do use a bit of Aloe Vera, don't like the long-list of nasties in sun-block, but it's a last resort if needs be. x

cc120 profile image
cc120 in reply to Spareribs

I see what you mean about sun block ingredients if you have inner or outer sensitivities to them. Aloe Vera wouldn't block sunlight, as I'm sure you know, but has many healing properties.

Thank you for the Grass roots link.

By the way, according to Louise this endo shouldn't have been on the recommended list as she has had previous complaint about him, she's now 'struck' him off. Good to know it wasn't my lack of communication skills that caused the poor outcome. x

faith63 profile image
faith63 in reply to cc120

I found out, through testing that my immune system reacts to milk products.

cc120 profile image
cc120 in reply to faith63

Thank you. Would be hard to give up milk, but if I ever get the opportunity to test, I will.

faith63 profile image
faith63 in reply to cc120

See the last part of his letter..he is saying that he believes that ft4 and ft3 always work in parallel!!! He doesn't believe that ft3 could remain low, if ft4 is in range. He would never, ever tests a reverse t3. He doesn't believe it exists.

cc120 profile image
cc120 in reply to faith63

I think he means in my case, as it was proven that I'm converting T4 to T3, but certainly even so, there is a possibility of variation. But generally he wasn't very helpful. So don't endo's believe in RT3, I didn't know that?

cc120 profile image
cc120

Hi reallyfedup123, have uploaded readable version. He also said that he couldn't prescribe T3, or anything else for that matter, he could only suggest to GP to prescribe anything.

ClarePerry1 profile image
ClarePerry1

Have you had a lap ?

cc120 profile image
cc120 in reply to ClarePerry1

A lap?

ClarePerry1 profile image
ClarePerry1

A diagnostic laparosropic keyhole surgery - this will definitely confirm if you have endo. I would see a Endo Specialist though.

cc120 profile image
cc120 in reply to ClarePerry1

Do you mean endometriosis? Rare in post menopausal women, have only related fatigue symptoms, none other.

ClarePerry1 profile image
ClarePerry1

sorry I thought you said you may have endo but could not see it - as had a similar situation xx

cc120 profile image
cc120 in reply to ClarePerry1

That's OK ClarePerry1, thank you for your interest. xxx

LouiseRoberts profile image
LouiseRoberts

Just a small comment to say that it is not a 'good' endo list. We are only ever passing on the experiences of people who have been to see these docs.

Having said that, I have a zero-tolerance policy and will remove this one.

L

x

cc120 profile image
cc120 in reply to LouiseRoberts

Thank you for clarifying Louise. I wondered if it was me not communicating clearly (though I did leave him full information on paper) which caused his inaccuracies. I guess he's the type that would do a song and dance at being removed from your list as he doesn't want to be bothered by the likes of us.

LouiseRoberts profile image
LouiseRoberts in reply to cc120

They don't actually know that they are on a list... well, we haven't told them anyway! :)

cc120 profile image
cc120 in reply to LouiseRoberts

No, I didn't think they did, but if he did know, he would probably be glad not to be on it, as he thinks we're all doo lally : )

cc120 profile image
cc120

Louise has now removed Dr G C from her recommended endo's list as she has also had previous poor feedback on this endo.

cc120 profile image
cc120 in reply to cc120

Clarification from Louise: ' Thyroid UK do not recommend any docs ever.

We can't. None of the staff at Thyroid UK have personal experience of any of the docs.

Also, as not everyone has the same health situation, they may not have the same experience with a doc.

So, both the Endo list and the list of private GPs are sent simply as ideas for docs people can try as we have heard they have helped people in the past. They are not 'Thyroid UK approved'. '

LouiseRoberts profile image
LouiseRoberts in reply to cc120

To further clarify - he had already been removed when I went to remove him this week.

I have a zero-tolerance policy and will remove after one complaint.

L

xxx

cc120 profile image
cc120

Louise has removed him, apparently she has received another bad review on this fellow.

Amandajl profile image
Amandajl

He defiantly need to come off the list, I saw him for the second time last week and I have diagnosed myself. My local endo has picked up,the gauntlet

cc120 profile image
cc120 in reply to Amandajl

I hope I get an alternative as easily, was such an effort to get to see him, then to see him, will have to get my energy up for the next GP onslaught.

cc120 profile image
cc120

Hi pettals, he must of been of some use to someone at somepoint?!?! He was dismissive of my case (an NHS patient), however though he wasn't dismissive of a private patient (cost her £500 for 2 appointments and £600 for tests) I've been speaking to via healthunlocked. Dr G C authorised loads of tests (which she paid for) but was incompetent as she ended up diagnosing herself in between the two appointments she had with him. She noted a Hyperparathyroid marker: a high calcium reading, and had a PTH test via her local hospital. PTH reading was over double upper range, so local endo diagnosed hyperparathyroid. When she saw Dr G C at her second appointment, on showing him the diagnosis, he just started shaking his head mumbling how he couldn't understand how he missed the high calcium marker.

cc120 profile image
cc120

Hi pettals, someone who has pains TSH OK, found she had hyperparathyroid. A marker could be high calcium but not necessarily so. You need a PTH test to rule out.

cc120 profile image
cc120

Someone commented on here that RHL of integrated medicine was a waste of time for her daughter, so I'm not too keen.

cc120 profile image
cc120

Hi pettals, what have you tried for your nerves. See moodcure.com/correcting_cor... . I've found Seriphos did help with reducing anxiety. I told my GP I don't want to be referred to the integrated, but to another endo. But depending on how things go, might consider the integrated.

cc120 profile image
cc120

A PTH test measures the parathyroid in your blood to determine if you have hyperparathyroid which is is the main disease of parathyroid glands which are on your thyroid: parathyroid.com/parathyroid...

cc120 profile image
cc120

Yes and very glib and condescending with it.

cc120 profile image
cc120

I hope he reads it : )

cc120 profile image
cc120

Yikes, now that is really taking the biscuit. Are they all psychopaths do you think? I realised he was indifferent at best and incompetent at worst, but to miss something that could be immediately fatal!!!!

Clutter profile image
Clutter

Pettals, Even if TSH is fine low or high FT4 and FT3 can cause pain. Meds may be fine but there can still be pain. Helvella posted this the other day healthunlocked.com/thyroidu...

cc120 profile image
cc120

Hi pettals, I believe my adrenal exhaustion led to my thyroid problems. Has anxiety been a problem for your throughout your life?

Here is Dr Lam's chart comparing adrenal fatigue and hypothyroid symptoms.

Underneath, titled: 'Low Thyroid Function Due to Adrenal Fatigue' he explains how hypothyroidism can be primary or secondary, as in developing due to adrenal exhaustion.

drlam.com/articles/adrenalf...

cc120 profile image
cc120

Basically, I believe he is saying that primary hypothyroidism is easier to fix than secondary hypothyroidism, as the adrenals need to be fixed first, then treat the thyroid. What adrenal support are you taking now?

cc120 profile image
cc120

Is your cortisol high?

web.archive.org/web/2010103...

'As a part of stress—either physically or emotionally induced—the adrenal glands release more "cortisol." Cortisol is a hormone that helps the body adapt to cellular needs that abruptly change during stress. The blood cortisol consequently rises. The increased cortisol transiently suppresses the thyroid system. Increased cortisol reaching cells of the pituitary gland suppresses TSH secretion. As a result, the reduced TSH reaching the thyroid gland decreases the glands' release of thyroid hormones into the blood. The increased cortisol reaching other cells inhibits their conversion of T4 to T3. The result is a body-wide slowing of thyroid hormone-driven metabolism.'

ADRENAL SUPPORT SUPPLEMENTS

From groups.yahoo.com/neo/groups...

'You will want to make sure you are supporting your adrenals. Adrenals run on salt, so you want to get some of the unprocessed sea salt, like Celtic Sea Salt and take 1/4-1/2 tsp in 16 oz of water several times per day. Plus, you want to get a good ionized multimineral, a good multi B like Swanson's Activated B's with methylfolate not folic acid and around 1000 mg of a real vit. C and not ascorbic acid per day. Sublingual methyl b12, 500-1000 mcg, can be very helpful as well as magnesium at 5 mg per pound of body weight. '

Others also recommend:

DHEA

Liquorice root tincture

Ashwaghanda NB side effects: webmd.com/vitamins-suppleme...

Also, worth noting: 'Just as your levels of adrenaline start coming down, so rises the amount of cortisol flowing through your veins. Moreover, cortisol has a much larger momentum than adrenaline, which means that even though it builds up slowly, it also takes a long time to go back to normal'..... en.wikibooks.org/wiki/Demys...

cc120 profile image
cc120

I know exactly what you mean pettals. NDT gave me back some energy so I could continue, but I have a way to go, mainly I believe due to needing to strengthen adrenals.

cc120 profile image
cc120

Yes the more things go wrong in a domino effect makes it hard to investigate the root cause.

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