Thyroid Function...Labs May Lie

[alicec]

Boron did wonders for me - for 2 months

Same here, though maybe I got benefit for a bit longer. It had a remarkable head clearing effect which unfortunately wasn't sustained. Also a remarkable energy increase for a while which I had attributed to D-ribose, but that too disappeared despite continuing the D-ribose.

I tried increasing the boron dose but not only did this not help, it started to make me feel worse. Eventually I had to stop the extra boron though have continued with a trace mineral preparation containing 0.7 mg B.

At first I thought the response was part of the refeeding syndrome which Freddd has been talking about recently but now I think this is less likely.

It could be that in repleting boron I had just exposed some other limiting factor. I did try various other minerals, also increasing B2, but none of these helped. If the problem is just some other missing nutrient, it is hard to understand why the boron started to become a real problem - one would just expect it to do nothing.

It felt much more like an active turning off - as if some feed-back inhibition had kicked in.

I have been thinking about thyroid hormone a lot lately as my last blood tests show a definite slide into mild hypothyroidism. Maybe the boron was stimulating T4 for a while and what has kicked in is increased draining off down the rT3 pathway. Certainly my rT3 is elevated.

Am about to try some slow-release T3. It will be interesting to see if it feels anything like the effect I once had with boron.

 

[Gondwanaland]

Am about to try some slow-release T3. It will be interesting to see if it feels anything like the effect I once had with boron.

It does, but it wears off too, and raisng the dose won't help.

 

[Gondwanaland]

It could be that in repleting boron I had just exposed some other limiting factor. I did try various other minerals, also increasing B2, but none of these helped.

Did you try Mn, Mg, Fe, Ca? It is a cascade and hard to predict at what point our reserves will fail, right?

If the problem is just some other missing nutrient, it is hard to understand why the boron started to become a real problem - one would just expect it to do nothing.

Well, I wouldn't expect that considering it has the potential of accumulating and becoming toxic...[/QUOTE]

 

[cph13]

Interesting. There has been a thread a couple of months ago where someone was taking Boron and had B2 deficiency because of Boron. I wonder if the other ways around is also true, that supplementing B2 makes one Boron deficient.

My husband gets instant migraine from the tiniest amout of Boron, which is also instantly relieved by B2.

This week I have been increasing the ingestion of high Boron foods in hopes it will help to balance my hormones.
Claims of decreased mental alertness in men women

Thank you so much for the hint, I haven't had much ginger since my oxalate intolerance one year ago. I will give it a new try.

Thank you @Gondwanaland.....lightbulb moment here: Claims of decreased mental alertness in men women
xo C
@snowman I'm sure you read this....easy on the borax.....bath soaks

 

[MAF14]

Boron did wonders for me - for 2 months, and then I could never take it again not even 100mcg due to parathyroid pain.
I never felt so clear headed as in those 2 months...

What dose did you begin with that helped with the mental clarity?

 

[Gondwanaland]

What dose did you begin with that helped with the mental clarity?

I started with 2mg, then after 2 months the parathyroid pain began and I kept lowering the dose, but could not tolerate it anymore. Retried at a very low dose, several months and one year later with the same pain. Never figured out what is missing.

 

[alicec]

It does, but it wears off too, and raisng the dose won't help.

Did anything else help?

 

[alicec]

Did you try Mn, Mg, Fe, Ca?

Mn yes (didn't help, maybe made me worse), no to the other three. I already take a lot of Mg and RBC Mg is at top of normal range. Increasing Mg in the past has been a bit of a problem.

I have elevated ferritin (yes I know this can just mean inflammation) and at times other iron studies suggest possible iron overload. So Fe supplements are something I scrupulously avoid.

Ca is a bit excitatory for me so again Ca supplementation is something I avoid. Blood ionised Ca is mid-range.

considering it has the potential of accumulating and becoming toxic

Can you give me some more info on this? I was under the impression that B is water soluble and any excess is removed via kidneys.

 

[Gondwanaland]

Blood ionised Ca is mid-range.

It always is... unless one is dying I guess. I find it very hard to assess Ca deficiency/excess. I had a very peculiar experience with Ca supplementation last December. 2-3 days of supplementation just cleared my brainfog for almost 2 months uninterrupted - but it wasn't repeatable. The smell of my urine during supllementation was awful, like Ca displaced something from receptors (Lead?)

Can you give me some more info on this? I was under the impression that B is water soluble and any excess is removed via kidneys.

I am sorry, this is an empiric observation... My kidneys probably have some extent of damage mainly due to past undiagnosed hyperinsulinemia for several years...

 

[snowman]

@Gondwanaland , I don't know much about oxalates or kidney dangers, but if ginger is a problem, these are some others that also reduce inflammation somewhat similarly to boron - cinnamon, thiamine (high dose up to 2500 RDA), inosine, niacinamide, quercetin, riboflavin, vitex, aloe, mustard seed, fenugreek.

Oh wouldn't it be nice if there were cheap home vitamin-mineral level tests you could do daily with a finger prick like the glucose monitors!

The mention of borax @cph13 reminded me of Ted's Borax Remedy on Earthclinic. I think he recommends it as a short term higher dose antifungal. However, they don't get as scientific as here with journal references and detailed biochemical explanations, and leave you to research a lot on your own, and their medical problems are far more heterogeneous.

I do vaguely recall that post a while back about boron and B2, but was there something that said they 2 together helped form something? Maybe if already have enough of that, then boron doesn't deplete B2 as much? Maybe if don't have enough of that, then need far more B2 than @alicec used, however much that was?

Musings on boron and parathyroid problems:
If boron causes more minerals to be deposited in the bone, including calcium, then perhaps it could build bone at a higher rate than the intake and retention of Ca can supply, and thus the parathyroids went wild trying to keep enough Ca in the blood when it was being deposited in bone so fast? If parathyroids preserve serum Ca level by taking it from bones while boron is depositing it into the bones, maybe that can cause a constant fruitless overworking of the parathyroids to the point of pain. Would it make a difference if calcium intake was increased? Does Vitamin K in high doses like 45mg of MK-4 per day - I think @Asklipia used this amount - to build bone also cause painful parathyroids or does it keep them from getting painful? I seem to remember someone in one of these threads had trouble supplementing calcium until they started taking Vitamin K2. Also, what is the role in all of this of calcitonin, which is likely lower than normal in hypothyroid patients who are not taking NDT.

 

[ahmo]

Has anyone tried pretty large doses of things that help convert T4 to T3 (such as selenium and boron), then going with cheap levothyroxine? If it works, maybe it could be a cheaper alternative for @ahmo and others.

I take T3 only rx, so converting is not an issue. I also use 200mcg selenium daily, and eat seed/nut mix which includes Brazil nuts. I no longer seem to need boron, always self-test negative for it.

 

[MAF14]

I take T3 only rx, so converting is not an issue. I also use 200mcg selenium daily, and eat seed/nut mix which includes Brazil nuts. I no longer seem to need boron, always self-test negative for it.

Cytomel or generic? What dose?

 

[ahmo]

Compounded T3 only. I'm currently taking 100mcg. Rudy Dragone talks in his 2014 vid about how needs change according to thyroid receptors, I think around 40" mark.

https://www.youtube.com/user/TheRLCLabs

 

[MAF14]

Compounded T3 only. I'm currently taking 100mcg. Rudy Dragone talks in his 2014 vid about how needs change according to thyroid receptors, I think around 40" mark.

https://www.youtube.com/user/TheRLCLabs

Thank you for the link! I actually started watching that once and couldnt ever find it again.

Semi random question... When you take T3 do you "feel" it kick in or notice an actual increase in body temp or HR? Or even feel hyper if you overlap doses too much?

 

[ahmo]

No, I never feel anything particular when I take thyroid. Even when I was not using slow release, I didn't have an immediate response.

 

[HelloHere]

This is amazing compliments from me to know forums like this can exist and you guys feel free and give advices ...more than experiences...
Well I believe I do have P.O.T.S since a year and half (dizy etc..) I also have a mild brugada ,what is long qt but I believe that does happen from time to time . I dunno...well I m newly diagnosed with some TSH....15..... So I m glad being able to may e have some feedback . I m very sensitive to ...a lot of things. Been going gluten free (Chronic Const.), I gave up meats, uppered my amount of fruits,veggies, as proteins I do have fish, sometimes nuts now.
I had hernia repairs and some months after these surgeries I found myself diagnosed with copd stage 2. Here goes the troubles, I got then a pneumonia shot, palpitations, breathing things,metoprolol, palpitations,FULL VERTIGO
.. bad EKG, 4 days in hospital, cardiac stress test ,heart echo, well with my help ....big help.from me ,p.o.t.syndrome came up.as the most clear diagnosis ,Drs agreed...thanks internet,dysautonomia potsssgurl,etc..so I had to leave with an official vertigo diagnosis the hospital. Since then, it s quite of a mess concerning a chronic pain on my upper left side still( nothing in the echo), my so called chronic pain from hernia repair makes me rely 75% more on my left side...(I believe I 'll be anyway a recurrent hernia patient one of these days unfortunately.) (It does somewhat bulge(highly nauseated if constipated..)so ....
I did spend some time in the woods as a pre teen and even earlier( I got bit by ticks more than once.

Therefore.my question as a p.o.t.s "patient" : and for those who knows a lil about this brugada even mild (lidocaine not a good deal, steroids ink, made me ...angry for a plantar fasciitis) I need then to ask if I can get a ACTH to check on my cortisol levels?? (My TSH s 15 ("normal" T3+T4) I have some doubts about k owing that much about thyroid I RELY ON YOU to TEACH ME MORE about these hormones such as norepinephrine that If I ain t misunderstanding IS the one produced in the adrenal glands AND that is MAYBE being quite overworked as norepinephrine is needed for the heart to make this blood (O.I) get to the brain...i suspect it s not as simple as thyroid pb and as my p.o.t.s pbbly haven't been taken care of when referred to an endocrinologist, they d just give me that small dosage of synthroid and that s it. I do not take anything for my p.o.t.s as any meds mess me up... looks like synthroids pbbly will. I appreciate any feedback when you can .

 

[pattismith]

this is so true that our disease looks like hypothryroidism; i'm not surprised that our condition was diagnosed this way before thyroid testing was available.
At this time, thyroid extract was used rather than T3 or T4....

I am like many of you, border line low with fT3, fT4 and TSH, so no endocrinologist will ever diagnose me with hypothyroidism...However I have tryed several times to supplement with T4 or T3 or both, and could not tolerate it.
Exactely what you describe in your post ...

I am thinking about trying with thryoid extract, it seems that some of the PR members here are doing better on it

"Desiccated thyroid extract vs Levothyroxine in the treatment of hypothyroidism
BACKGROUND
Hypothyroidism, or an underactive thyroid gland, is a common endocrine problem and requires lifelong treatment with thyroid hormone pills. Untreated hypothyroidism is associated with a wide variety of symptoms, many of which are nonspecific. In particular, memory problems and depression (psychometric problems) as well as weight gain are very common symptoms in hypothyroidism but also have multiple other nonthyroidal causes as well. Levothyroxine is the main thyroid hormone produced by the thyroid gland and the synthetic form is the most common form of thyroid hormone replacement therapy. Prior to the availability of the pure levothyroxine, desiccated animal thyroid extract was the only treatment for hypothyroidism. Today, some individuals prefer dessicated thyroid extract as a more “natural” thyroid hormone. In addition, some patients who continue to have symptoms of hypothyroidism when taking levothyroxine report improvement in these symptoms when switched to desiccated thyroid extract. This study was performed to compare levothyroxine to desiccated thyroid extract in terms of thyroid blood tests, changes in weight, psychometric test results and patient preference.

THE FULL ARTICLE TITLE: Hoang TD et al Desiccated thyroid extract compared with levothyroxine in the treatment of hypothyroidism: A randomized, double-blind, crossover study. J Clin Endo- crinol Metab 2013;98:1982-90. Epub March 28, 2013.

SUMMARY OF THE STUDY
This was a study of 70 patients with hypothyroidism who were treated with either desiccated thyroid extract or levothyroxine for 12 weeks followed by a switch to orgthe other option for another 16 weeks. The participants were “blinded” during both phases – they did not know the type of pill they received. After each treatment period patients were weighed, had blood tests, underwent psychometric testing and were asked which therapy they preferred.

The researchers report that 49% of the patients preferred desiccated thyroid extract, 19% preferred levothyroxine and 23% had no preference. Desiccated thyroid extract use was also associated with more weight loss. There was no difference in the psychometric testing or in any symptoms. Both types of thyroid hormone were able to normalize the abnormal thyroid blood tests.

WHAT ARE THE IMPLICATIONS OF THIS STUDY?Although desiccated thyroid extract is not widely used, this study showed that many patients preferred this option as compared with levothyroxine. This result was observed despite there being no differences in thyroid function blood test and psychometric test results, although use of desiccated thyroid extract was associated with some weight loss. These results suggest that there may be a certain number of patients in who desiccated thyroid extract might be a reasonable treatment option. Further research is needed on this topic to confirm which patients this might benefit the most form desiccated thyroid extract therapy."

I always had "normal" thyroid labs. T4/T3/TSH were always in range. I always had cold hands and feet and hypothyroid symptoms.

I have been reading articles and interviews from a doctor from Canada who is no longer in practice. He mentions that before committees on health got together in the 70s (I think) that CFS and Fibromyalgia were nonexistent terms. The epidemic simply did not exist, because it was recognized as a hypothyroid condition. TSH blood tests were not used. And according to him and to me they are completely useless.

It wasn't until 4 months ago that my thyroid started showing Low T4 and T3, and TSH. I have suffered these fatigue symptoms for practically 7 years (not to the same extent the entire time).

Due to the hypothyroidism I think my entire endocrine system started failing. Hypothyroidism caused low testosterone without a doubt.

This doctor claims that the longer a patient has chronic fatigue, the longer it takes to restore the patient. He uses 5+ grains of armor thyroid a day in CFS/Fibros which is equivalent to like 200mcg+ of T4. Personally since taking 200mcg of T4 I have noticed huge improvement in energy.

When you have comorbid cortisol deficiency like me it is tricky though because low cortisol will allow thyroid hormone to hang around in the blood longer. I had to increase my cortisol dose because I was getting hyperthyroid symptoms at 100mcg of T4. I now take 200mcg T4 a day without a problem.

I have long suspected that TSH is completely useless, and it is. Hell, even thyroid labs are completely useless IMO. These are my opinions and if someone replies that I am insane for listing ten possible treatments of chronic fatigue over ten posts screw off because I am not going to reply. I do help this information helps some of you.

I also think T4 plays more of a role in the body than doctors think. When I use T3 it lasts like 2 hours in me. That is the opinion of many doctors too. It is arguable whether timed release T3 even absorbs properly down the intestinal tract. I choose high dose T4.

The problem is that the brain can need more thyroid and it has no way of demanding more direct thyroid hormone ... the thyroid will proceed at its normal level of production, which in some people is next to nothing. I will find this doctor's name. He apparently had a huge success rate - and he mentions pre 1950 doctors treating this condition with high dose dessicated thyroid hormones.

I think the reason that it takes people who have been ill longer longer to respond is that the whole hormone system and possibly nervous system is impacted. I think beta agonists might benefit a CFS patient in addition to high dose thyroid hormone because lack of thyroid causes down regulation of beta adrenergic receptor production. I don't have a citation for this at the moment and I don't feel like looking for it.

In summary, it is quite possible that the committees that decided TSH to be king effectively ruined thyroid replacement therapy for everyone by underdosing them by one third.

If you respond extremely to hormones please give it some time. The receptors are upregulated so it takes time for them to normalize. I don't think this means less hormone should be taken in all cases. Thyroid hormone seems like more is better. Taking only high dose T3 I might not recommend.

I write these posts because I genuinely empathize with other people who have spent tens of thousands of dollars (or years) fighting what should be completely curable by a physician who has read medical literature pre 1950. It is amazing how one idea like the TSH test can completely ruin medicine.

My goal of this post was to inform you all that my thyroid symptoms showed up long before lab tests did, and that I only respond to high dose T4 (200mcg). Anything less does nothing for my CFS.

You all are free to comment but I'm not about to argue if that is the intention of any of you.

If you think you may be cortisol deficient, an ACTH stim test is needed to verify this. An AM cortisol test says absolutely nothing. I have seen people have very high PM readings of cortisol and low levels of AM cortisol. If you have low cortisol and go on thyroid hormone, you probably will feel worse.