Hello everyone and thankyou for accepting me..I have been reading so many stories and their emotional roller coaster of health issues..I pray someone will reach out to me.As a mother..I feel I'm emotionally physically and financially exhausted.
My dear son was diagnosed with Type 1 diabetes at 11yrs old..shortly after he developed hypothyroidism .then later been told Hashimoto..We spent alot of time in hospitals meetings clinic for kids etc.
But it was extremely difficult when he reached puberty.. My sons health was deteriorating he was feeling more and more unwell..He stopped taking lexothyroxine 7yrs ago and has been on diets and regime to help himself...He is now 32 yrs old.In addition having consultations with Functional practioners..still no change..
I'm so sorry for the lengthy write..we are now with a private Endo and my son has not improved..chronic fatigue cold hands and feet hairless low libido.. gut issues..jaundice pale skin.brain fog.. bloated stomach
There is no quality of life for simple daily activities..I'm lost
please find attached recent bloods and he also takes supplements which I'm very concerned with
Zinc..selenium..maca..ashwagandha..tongkat Ali.cistanche.shilajit.beef isolate protein
Do you know when your son last took his Armour before this test? It makes a big difference as immediately after taking anything containing T3 there is quite a large peak before a slower drop off. Obviously with varying levels it makes a difference when the last dose of Armour was before the test.
How does your son split his Armour? Ho many times does he take it a day?
With going to bed late and waking late he may benefit from some Melatonin.
It looks like his FT4 is below range. Some people on Armour top up the low T4 levels with a small amount of Levo.
Usually when taking anything with T3 such as Armour we would recommend an 8-12 hour gap between last dose and blood draw. Otherwise you get false low results which is pretty much what his are showing now.
If he took a bed time dose that may help his sleep, so suggest splitting x3. Morning, afternoon & bedtime.
As others have pointed out changing NDT by more than a quarter grain will mena you miss your sweet spot.
He needs to get folate tested.
Yes some people do add levo to NDT as the ratio of t3/t4 isnt always quite right for a human.
No thyroid hormone works well until ferritin, folate, B12 and vitamin D are up and maintained at optimal levels.
Does your son feel better on NDT than T4 - Levothyroxine ?
NDT has a fixed ratio of T3and T4 in each grain at around a 1/4 ratio T3/T4 - maybe this ratio isn't quite right for him:
Some people find their health improved better taking synthetic T3 and T4 and adjusting the ratio of T3 and T4 themselves to find a ratio that better suits them.
The other option would to try T3 Liothyronine only :
I self medicate NDT and titrate my dose by 1/4 grains - it reads above as though your son is adjusting by more than this and maybe missing his best dose on NDT.
There are no specific blood tests for NDT - you dose to the relief of symptoms but medics tend to use the ranges which apply to dosing and monitoring of synthetic T3 and T4 thyroid hormones.
We need to know the time lapse from his last dose of NDT to the blood draw tocomment on these result.
I wonder if he might feel better splitting his dose - has he tried this option already?
It may give him an option to take a little more NDT - AM and PM ?
These are some tops I have put together that helped me heal my gut and I realise hes already doing some of this. If he has got bloating then I think the low FODMAP diet shold be tried to see what any offending foods are. Also a glass of kefir a day is highly recommended.
➢Try adding a teaspoon of apple cider vinegar (must contain the ‘Mother’, see label) to a glass of water before your main meal. This helps acidify the stomach.
➢Reduce sugar and processed (especially ultra processed) foods, they feed the bad bacteria.
➢Add probiotic foods such as natural yogurt, kefir, kombucha, sauerkraut, kimchi, pickles. Dairy free versions are available in supermarkets or online. Ask staff to help you find the dairy free section, some supermarkets have a better selection than others. You can also make your own versions of these at home including water kefir. Many people swear by a glass of kefir a day.
➢Eat the rainbow. This includes a variety of meats including game (if omnivore), vegetables and fruit.
Hello and thankyou for your response advice and guidance.I have found this forum very uplifting an eye opener to research other links.Firstly my son stopped lexo 7yrs ago..felt unwell..tests.doctors.hospitals.scans etc.functional practioners..nothing sound any promise
Now with a private Endo has 3.5 grains of armour and splits.My son decided to increase by 0.5 grain 2 weeks ago..small burst of energy then bed ridden again.
Bloods are drawn about 19hrs after last dose of armour
I'm not sure what all these other supplements are doing ?
I'm also not sure about the interaction other drugs maybe causing on his ability to convert well the T4 into T3 :
The adrenals and thyroid work in tandem - and I started supplementing adrenal glandular and building up my core strength vitamins and minerals a good year before I even started self medicating NDT.
The last option is to try T3 - Liothyronine only medication - it is much more powerful than T4 - so it will be a slow build.
he also takes supplements which I'm very concerned with
And so should he be! One has to be very careful when taking supplements because they're not all beneficial - and some can be dangerous. Let's have a closer look at them:
Zinc
He has Hashi's, which means that he has been, and to a certain extent, still is. Zinc, as you probably know, has to be balanced with copper, when one is high, the other will become low. When hypo, one usually has one too high and the other too low - usually zinc is the low one but you can't count on it. So, they both should be tested before supplementing either of them. Too much of either is not good.
Selenium
Selenium is esssential for the good function of the thyroid, and for converting T4 to T3. But, as always, you can have too much of a good thing. So, how much is he taking and for how long has he been taking it. Also, which form of selenium is he taking?
maca..ashwagandha..tongkat ali
These are adaptogens. Adaptogens are supposed to 'balance' hormones - especially cortisol. That is to say, raise levels if they are low, and reduce them if they are high. But, if something sounds too good to be true, then it probably is. From experience of reading on here, I would say that what they do depends a lot on the person who is taking them, they might raise levels, even if they're high, and they might lower them even if they're already low. Or, they might do nothing at all.
So, very important to get cortisol tested before embarking on adaptogen supplementation, and then retest from time to time to see what effect the supplements are having.
Tong kat can also affect testosterone, so he'd to well to get that tested, too.
However, given that he is also taking cistanche and shilajit I'm guessing he has - or thinks he has - low testosterone. But, it would still be a very good idea to keep an eye on levels. Presuming these things work, you don't want to much testosterone any more than any other hormone.
tudca
Has he had his gallbladder removed?
black seed oil
Whilst it probably won't do him any harm, I very much doubt it's doing him any good. I've never heard of it doing anything positive.
In fact, I wonder if any of this is doing him any good. It's far too random and repeatative. And must be costing him a fortune! I would say it's time for him to take stock of what is doing what. That would mean stopping everything for a while - although perhaps not the betaine hcl, as he probably has low stomach acid - and waiting some time for it all to leave his system. Then starting them again, one at a time, each one for several weeks, to see if he can feel any positive effects. If he can't, then there's no point in continuing with them.
And, he needs to get some testing done:
Zinc
Copper
Selenium
Testosterone
Cortisol
vit D
vit B12
folate
ferritin
Then he can work out a more comprehensive supplementation plan.
It's not just low testosterone that causes low libido. Low thyroid hormones will also cause it. Low thyroid hormones also cause low testosterone, and if his thyroid hormones are low, no amount of supplements will raise it.
How is his cholesterol? If it's high, is he taking statins? If so, that, too, will cause low testosterone.
Maca is an adaptogen, so is ashwaghanda, and cistanche is described as having "adaptogenic properties" in one link I read just now. I'd never heard of cistanche before.
I've read several times that adaptogens can "balance hormones", often in connection with cortisol. Which hormones? What is being balanced with what? Is it raising cortisol or lowering it? I think people ought to know more about adaptogens before they take them, and should do some testing on whatever they are trying to affect with the adaptogens before they try them. For example, a saliva cortisol test should be done before adding in an adaptogen, then test again after three or four months.
I wrote a thread about adaptogens some time ago and asked for experiences of them. You might find it interesting :
If maca raises cortisol and ashwaghanda lowers it, it is probably not worth taking either. And was your son's cortisol high or low before he took them? I also don't believe that an individual adaptogen can raise cortisol for a few months and then start to lower it.
Personally, I do take an adaptogen called Holy Basil, but it is the only one I take and, for me, it reduces cortisol and allows me to get to sleep. But other people have reported that it does nothing for them.
.
Saliva cortisol results from the results you've posted (I hope I've read them correctly - they are a bit hard to read) :
Sample 1 : 7.0 Range (< 20.3)
Sample 2 : 17.5 Range (1.6 - 5.6)
Sample 3 : 7.0 Range (< 6.94)
Sample 4 : 2.3 Range ( < 7.56)
I don't know which company did that saliva cortisol test but it isn't a very good one. If a reference range has no lower level it suggests that zero is part of the reference range. And I really don't believe that living people would survive for very long with zero cortisol.
Here is a link showing how cortisol changes throughout the day :
What should happen is that cortisol is very low at bedtime and then part way through the night it starts to rise in preparation for the day. It should hit its peak at the time someone wakes or soon after.
And see this link and look at the optimal levels for saliva cortisol results in example 1 :
With your son's results I can think of a couple of explanations.
1) Sample 2 was produced at about the time your son normally wakes up, and his whole day is shifted later than normal. This is common with chronic insomnia. Or perhaps he has a job that is not carried out during normal office hours and his cortisol output has shifted as a result.
2) Another possibility is that your son has developed adrenal fatigue and his maximum cortisol output is dropping as a result and the body is playing "catch up" later in the day.
Note that adrenal fatigue is considered to be "not real" by doctors. But it is real. It indicates that the adrenal glands are not working as well as they should, and are starting to struggle because the patient is not in good health, but if their health problems were fixed their adrenal glands would pick up, recover, and work normally.
There is another condition called "Adrenal Insufficiency" that doctors do believe in. It usually develops as a result of an autoimmune condition and it eventually destroys the adrenal glands. This needs lifelong treatment and the glands never recover. But your son's saliva cortisol results don't even hint at that as a possibility (which is good!).
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For people with adrenal fatigue, this link might be helpful (it's old and there may be some broken links) :
Yes u r completely right , this is know as reverse cortisol circardian or adrenal fatigue , that is the main problem , taking ashwaghanda will do more problem than solving so stop , maca is fine , simple solution is add valerian root cap + bacopa high dose at night and hope fully will solve the adrenal issue but dessicated adrenal will give few days relief only , with a week or so most of the symptoms will decrease and obv the testosterone level , continue multivitamin and minerals , and yes u need to add t4 bring it to upper levelHth
Hello, it sounds as though you have thrown everything at it (financially, physically and emotionally) and I’m so sorry that you’ve both had to go through this experience. You have had some very good advice above, however, sometimes, it might be good to unwind some of the “extras” he is taking because you may not even know what is helping and what isn’t and everything he is putting in to his system is very complicated. It seems as though none of those things have truly helped him though. I’d be tempted to roll back slowly and one at a time with anything that isn’t truly required from a medical perspective (ie maintain diabetes and thyroid drugs). To then have a clean state to work out the baseline of health (vits plus minerals etc) before making a new plan.
My other suggestion is that have you ever looked into him having an issue with any T4 meds? Of course NDT that he is currently taking contains T4 as well as T3. There are a number of individuals who simply cannot tolerate T4 and it causes them to feel more unwell or even to not get well. Paul Robinson is the name of the chap you need to google (watch his YouTube video on his story for a start) and he also has published some books which are excellent and very helpful. He also has a website. Essentially, he was very very unwell and despite being on thyroid meds, never got rid of his original symptoms and constantly got fobbed off that the issue now had to be something else (which it wasn’t). He spent 10 years reading endocrinology books and then decided to go on to T3 only medication which after a process of optimisation and using the T3 to increase his cortisol (CT3M method) he was able to get himself well. This is worth investigating.
Good luck and I’m so sorry that you’ve had to go through such a lot!x
Sully66, Hi! Your son’s story is soooo close to my son’s it’s amazing! My son is also 32yrs old now too and we have been trying to fix his hypothyroidism symptoms for the past 10 years! And I know first hand how incredibly painful it is as a parent knowing your son is struggling so much with his condition and everything you’ve tried so far isn’t working. And I can honestly say my son is nearly fixed now!
Literally ALL the advice given so far is right on, but it can be overwhelming until you can figure out how to make sense of it all and develop an action plan to fix your son. I was in exactly your position until I read two books: Stop the Thyroid Madness by Janie A Bowthorpe (US) and The Thyroid Patient’s Manual by Paul Robinson (UK) who was mentioned in a previous post.
YOU ABSOLUTELY HAVE TO READ THESE TWO BOOKS TO UNDERSTAND ALL THAT YOU WILL NEED TO DO TO FIX YOUR SON!!! They both cover everything and are similar in many ways but both helped me (and therefore my son!).
My son was on and off Levo (T4) for years but complained it wasn’t helping. We then moved him to NDT but it didn’t raise his FT3 enough. He then went to straight T4 and T3 which helped his FT3 but his Reverse T3 (RT3) went up too much. (RT3 takes up FT3 receptor slots so decreases impact of his increased FT3. Both books explain RT3 and its importance in treating hypo.) We FINALLY got him on all T3 and that was the answer! (For some, T4 actually causes more problems than it fixes.)
Regarding all of your son’s supplements, we had the same issue with my son. You name the supplement, he took it! We eventually got him off most everything since they obviously weren’t working. He is currently only taking Vit B12 (methylcobalamin), Vit D3, L-Methylfolate (B9), and magnesium glycinate.
I could go on and on but it would be best if you read these books for starters. And I’d be more than happy to give you my email so we could chat offline. I had another hypo person I was able to bounce things off of during this process which was incredibly helpful!
Andy (US)
PS: Your son’s cortisol circadian rhythm is out of wack causing him to wake up at noon. The books will help you through this too.
I’m not sure he had SIBO, but we did have him do liver cleanses and take probiotics to ensure any gut issues were addressed. He doesn’t absorb B12 well which could either be a gut biome issue or hypo related. He did have constipation though. Have you read either of the two books I mentioned? It’s much easier seeing it all laid out in one place vs bits and pieces in (the very good!) replies in this forum.
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My son
Update - Endo visit - don't know how I feel!
RECENT BLOOD RESULTS from....just don't understand post.
Please, - help needed with my son's results and symptons
Son still not great, help with blood results again please.
