Rawr!

[Litatamon]

I don't know what else to say, laughing. Insert big fat sigh as well. I have zero understanding why my labs continue to be so off. The endocrinologist is going to accuse me of non-compliance yet again (I will go NOPE, NOPE & NOPE.) I take those little buggers in the middle of the night like a champ.

I have only had one lab in 'normal' range since my thyroidectomy a year and half ago. That was on Synthroid only (225 mcg) & I could not even function through a day with that one, it was weirdly the absolute worse time period with intense brain fog, narcolepsy-like instant sleep (not being dramatic), crazy hair loss & the inability to write a sentence without missing entire words. And a myriad of other issues I do not wish to return to & will not.

See attachment for labs just in - First is TSH, second is T4, and the last t3. Protocol followed. T4 makes sense since it is NDT, yes?

I am currently on 155 mg Erfa. Have had to jump all the place due to border issues, cost and serious levothyroxine issues. We have no lactose-free levothyroxine choice in Canada.

**I do not feel that bad right now. Not fantastic but not bad. So ???? **

And I can not afford ($) to up my dose.😔 But what choice will I have.

So one question radd (tagging only because you mentioned the HPT axis a while back, thank you for your continued patience with my inability to understand)

Anyone - Does a pituitary issue affecting the TSH happen without a thyroid? I guess that is a really stupid question but I am so confused about that & what this could be.

Does this all denote I have a serious stomach absorption issue? I guess so, eh? Have been both vitamin d and b12 deficient & am on b12 shots.

But a gastroscopy gave no extra information.

I had sepsis twice, two long hospital stays. Adding that as I truly feel something happened the second time, that had not been found. Rawr. So tired of trying to balance budgeting, border issues & this crazy puzzle.

Thanks for any insight o wise ones.

[nara8]

If I were you I would try t4 and t3. I'm on t4 only and feel fatigued and sleepy all day and drink coffee in spite of taking beta blockers.

[Litatamon in reply to nara8]

Unfortunately I have tried it Nara. Thank you. I told the endocrinologist I have never drank coffee in my life and had to just to function, just like you. And tachycardia set in.Labs really off on 150 mcg Synthroid and 25 Liothyronine as well.

I felt better on t4/t3 than Synthroid only 💯 but not as good as NDT. Have tremendous gas, brain fog and tiredness any time Synthroid is in the mix.

(I am super lucky getting an endocrinologist that was open to NDT & liothyronine, feel blessed to have found him. Both my former GP & former endocrinologist refused to let me off Synthroid-only dosing despite telling both I can not function through a day.

The pharmacist admits too many doctors protect themselves (ie. evil NDT and its evil cousin Cytomel 😁), instead of helping their patients. Thankful to hear someone that understands.

Thank you for your post & help Nara. All the best to you.

[gabkad in reply to Litatamon]

There is less than 50 milligrams of lactose per tablet of synthroid or eltroxin. 250 ml of milk contains 13 GRAMS which is thousands of times more than what is in the pill. (1 gram = 1000 milligrams). It seems rather odd that such a small amount of lactose would cause adverse symptoms when children in Japan are able to consume 200 ml of milk for lunch at school routinely and not have typical lactose intolerance symptoms even though they do not carry the lactase persistence gene.

But anyway, you could take lactase enzyme tablets with the synthroid or eltroxin and that would entirely eliminate the lactose if it is actually lactose that is causing the problems. Although it seems your problem isn't the lactose but an inability to absorb hormone either from the NDT or the synthroid/cytomel combo.

Perhaps you could try liquid levothyroxine. That seems to be better absorbed than pills. Cytomel shouldn't be a problem to absorb given that even the presence of food in the stomach does not interfere with absorption.

[helvella in reply to gabkad]

I don't think the issue of lactose in levothyroxine is due to simple lactose intolerance.

I have no issues I am aware of with consuming lactose. But the levothyroxine products I prefer have all been lactose-free. (But not Teva - didn't get along with that.)

Though actual lactose-intolerance would likely make the issues worse.

[gabkad in reply to helvella]

What is the adverse symptom(s) from taking thyroxine tablets that contain lactose?

I've taken all sorts of levo pills since 1984 and as far as I'm aware, have not had any side effects. I have no idea what to look for. People say that something or other doesn't agree with them but I don't know what that means.

[helvella in reply to gabkad]

It's difficult because it is quite subtle.

One example, I burp more!

When everything is right, I take my levothyroxine and forget about it. I go to bed, just after taking it, and sleep well all night.

When something isn't right, I think about it. I often don't sleep quite as well.

I suspect absorption varies so that my effective dose changes a bit.

[Litatamon in reply to gabkad]

Very happy for you that levothyroxine suits you, gabkad - happy for you with a sprinkle of intense envy.

Lactose is not my full issue with levothyroxine, but its effects are not subtle nonetheless. Daily intense gas that I never had before levothyroxine needed after thyroidectomy.

Never had an issue prior. As Jim & my pharmacist say, it is such a minute amount and should not be causing any issues. But it does nonetheless. I have even crossed off the dyes by using 50 mcg Synthroid in multiples, which contain no dye.

There are also studies that discuss lactose being an issue with absorption for some. Whether that corresponds to me, who the heck knows.

Separate from the lactose (which was not a big deal with my post), levothyroxine at many dose levels & a variance in labs - so this is clearly not a dosage issue - gives me:

Brain fog, hair loss, sleepiness, joint & muscle aches. At levels that affect my day. NDT gives me very little of any of those issues, even with poor labs. So that makes it clear it is definitely the levothyroxine as an issue for me.

I understand there are a ton of people that take levothyroxine with zero issues. Even with a thyroidectomy. I sincerely wish I was one of them, starting with it is an insanely cheap drug here (Canada). And that alone would make life easier.

[Litatamon in reply to gabkad]

Thanks Jim. We do not have liquid levothyroxine in Canada, unfortunately. And have strict importing laws.

Unless it can be compounded. And then budgeting comes into play.

There are medical journals that discuss the lactose issue & absorption.

But I have had adverse effects on Synthroid probably beyond the lactose (but definite lactose ones as Erfa is manufactured differently re: lactose as Helvella has explained to me & it has been the best, not perfect but the best). I tried Eltroxin on one go, tons of joint & muscle pain even though the pharmacist said they are exactly the same (Synthroid ). And that could not be it. It was 💯 it, as it went away as soon as I switched back.

I have felt my best on NDT, Erfa & Thyroid S. I would have continued on Thyroid S (despite intense gas - lactose is an ingredient) but one of my shipments got seized. The chances of that happening again are slim but I rather not suffer the threat of being fined. Or worry about hormones getting to me.

Thank you, I appreciate your input.

(I have thought about lactase but already just buying the hormones is a stretch and stress. And as you said, this is all beyond just lactose anyway.)

[helvella in reply to Litatamon]

It appears from outside the country that Tirocaps have been approved.

dhpp.hpfb-dgpsa.ca/dhpp/res...

Is that product not available?

[Litatamon in reply to helvella]

Every pharmacist (about six asked) told me no. Most had no clue what I was even talking about, but still put it through their system.

I shall give it another go Helvella. Thank you.

[gabkad in reply to Litatamon]

Is Tirosint-sol not available here? I thought it was.

I'll ask the pharmacist although to be honest, there aren't too many pharmacies that show any enthusiasm for the patients. They appear to make their money with the monthly huge package of pills being dispensed to older adults. The heart drugs, the diuretics, and the statins.

[Litatamon in reply to gabkad]

Hi gabkad,

Is 'here' in your inquiry, the UK? I am in Canada.

[jimh111]

Taking levothyroxine with fruit juice aids absorption perhaps the same applies to NDT. Why take your thyroid medication in the middle of the night? I'm guessing your stomach will be more active during the day.

You could write to the manufacturer of the NDT explaining you have malabsorption and asking how you can improve absorption.

[Ukie in reply to jimh111]

Hi Jim. ‘Taking levothyroxine with fruit juice aids absorption’. Really? I’ve always understood that we shouldn’t take anything with levo but water. That’s why I take mine in the middle of the night.

[tattybogle in reply to Ukie]

'tis true ... vit C does appear to aid absorption of levo ... There are quite a few research references to this if you search Vit C absorption Levothyroxine . eg

academic.oup.com/jcem/artic...

Effect of Vitamin C on the Absorption of Levothyroxine in Patients With Hypothyroidism and Gastritis

William Jubiz, Marcela Ramirez

The Journal of Clinical Endocrinology & Metabolism, Volume 99, Issue 6, 1 June 2014, Pages E1031–E1034, doi.org/10.1210/jc.2013-4360

Published: 01 June 2014

[jimh111 in reply to Ukie]

It was recommended by Dr David Halsall youtube.com/watch?v=Z0Z-zYF...(Not working as expected?) who is in charge of blood testing at Addnenbrooke's a leading hospital in Cambridge. Fruit juice is acidic and so helps break down the tablets. If you have it at night I suggest swilling your mouth out with plain water afterwards so it doesn't break down your teeth also.

[Litatamon in reply to jimh111]

Great idea, thank you Jim. I shall write to them.

[radd]

Litamon,

I assume you mean those are your ‘frees’. To state the obvious, yes both thyroid hormones are severely low even though you are medicating 155mg Efra, and very similar to your results 3 months ago on 3 & 1/4 grains of Thyroid-S.

The normal functioning pituitary responds to thyroid hormone in the blood stream regardless of whether that thyroid hormone is supplied by the thyroid gland or exogenously, but many may experience a disconnect between the set points of TSH and medicated thyroid hormone. This is something the medical establishment refuse to acknowledge and why so many patients dosed by TSH alone remain under-medicated and symptomatic.

For those with Hashi, the fact we have to medicate indicates change within the HPT axis. You had a thyroidectomy that involved removing a thyroid gland that supplied T4, but also secreted a bit of T3 that would have encouraged further conversion. You also had a pituitary that secreted the right amount of TSH to help control thyroid hormones levels and further FT3 conversion. After your thyroidectomy you experienced a pituitary most likely very confused by T4 mono-therapy meds, and sudden and enormous changes in dose .

Sorry you are still having troubles even with NDT. The previous med and doses changes will not have been conducive in encouraging better thyroid hormone performance, and because your nutrients have also been so low if this were me I would consider three things outside of your med dose which looks ok as a starting point -

If you aren’t on PPI’s, I would add Betaine + pepsin to aid improved absorption. If you are already taking, then increase the dose. I had to take huge doses in the beginning for about 6 - 12 months before secretion of own gastric acid was initiated again. Also digestive enzymes and probiotics. Be mindful these gut issues might be due to microbiome in-balance caused by infection or fungal issues, etc. in which case certain probiotics could make things worse, but all the while issues remain unaddressed absorption problems risk continuing/worsening no matter what supports you put in place.

Gastric acid does so much more than supply a correct pH balance allowing better absorption and killing infection. It removes Vit B12 from food and helps it combine with intrinsic factor; it also liberates minerals from their salts converting into ionic forms of calcium, magnesium, zinc, iron, chromium, etc; it sends signals that closes the sphincter between the oesophagus and stomach (LES) that prevents acid reflux; it triggers the small intestine to release pancreatic enzymes to further digest foods; it signals the gallbladder to release bile to emulsify fats; and lots more.

Once you are (hopefully) absorbing better with improved gut function all round, be mindful that many feel better with FT4 higher in ratio to FT3 than NDT may allow, and this can be addressed by adding some Levo. Even members who were unable to tolerate Levothyroxin mono-therapy (myself included) are able to do so when the majority of the med dose remains as NDT. This isn’t something to do immediately but as you worked on improving absorption you might find your FT3 climbing too high in relation to FT4. Some members (including myself) have also had to reduce thyroid hormone total med dose as 'everything' started working better.

Your TSH is very high but the pituitary could have just become super-sensitive after the trauma it has seen. However, it is worth mindfully recording these results and I can't remember all your previous TFT's but has it ever been 'normal' since your thyrodectomy?

[arTistapple in reply to radd]

I have found this really interesting Radd. Any recommendations of where to source the correct Betaine and Pepsin? Reason being, terrible trouble with reflux and usual natural remedies not working at the moment.

[radd in reply to arTistapple]

arTistapple,

Bearing in mind you can end up taking up to 5 x tablets per protein rich meal, the best I have found in regards of quality and value for money is Betaine HCL with Pepsin and Genetian Bitters by Doctors Best. You get a huge bottle for about £28.00 that will last for simply ages.

dolphinfitness.co.uk/en/doc...

[arTistapple in reply to radd]

Ooh thanks. I use dolphin for other things. Thank you.

[Litatamon in reply to radd]

First, thank you. I appreciate it.

I have had about six labs.

Only one has been normal @ 225 mcg Synthroid only. But weirdly enough, it was the absolute worst a la symptoms hands down & back around. Like non-functioning days, not being dramatic.

This is what I do not get.

All other labs have been nowhere close to normal. But better times than that period at 225 mcg Synthroid & a 'normal' lab..

Thyroid S dose was 33? TSH & although I had a very rapid weight gain I felt pretty good.

I agree all these choices in hormones are not great for my body. But it was not due to me a la choice, it was ongoing circumstances.

Something seemed to go awry when my first endocrinologist post-surgery went from 112,5 mcg (decided by surgeon) to 200 mcg Synthroid in one go. I came out of this surgery feeling so good with hormones. Like I never had many in my entire life. I realize that makes no sense, smiling.

Thank you Radd.

So there is nothing to ask my endocrinologist to do/test re: pituitary?

[SlowDragon Administrator]

excellent reply by radd

you need to retest vitamin D, folate, ferritin and B12

Vitamin levels need to be optimal

If taking B12 you also need a daily vitamin B complex too

[Litatamon in reply to SlowDragon]

Hi Slow Dragon, all are fine, labs & supplementation. But thank you. Regular b12 shots, vitamin d supplementation & good labs re: ferritin. I do not take a b vitamin, I shall give it a go.

Thank you.

[Litatamon]

radd ,

In your opinion there is no testing to talk to my endocrinologist about next week? Re: pituitary or stomach. It could simply be the pituitary has had enough of a ride, so to speak?

Also, I feel the best on NDT despite the worst labs of all. I don't understand that at all. I do not feel fantastic, but I do not feel poor either. I am just to let that go in my head and ignore the labs somewhat? Thoughts? Could it simply be I need the other thyroid hormones that are in NDT, given no thyroid.

(I know I have to make these decisions, just curious besides working on my digestion, where you think I should put my head at - I certainly do not want to get frustrated every time I see a lab. Would like to avoid that emotional drop. Thank you. )

[radd in reply to Litatamon]

Litamon,

Gut absorption issues often improve when thyroid hormones are optimised and working better, and can be supported as I have described above, eg betaine HCl + pepsin, digestive enzymes, probiotics. You could even take some ox bike to support the gallbladder that loses good signalling without adequate thyroid hormones.

With regard to the pituitary do you mean something like a pituitary tumour? Classic symptoms are constant headaches, vision disturbances, low BP, etc, but you indicate your symptoms are improving and you feel a lot better on the NDT meds.

There is something called 'assay interference' which gives false results and which biotin is well known for being implicated but the driver can be literally anything endogenous or exogenous (antibodies to mouse droppings! 😳). You could point out your high TSH to endo and ask for the test to be assessed by another lab to eliminate assay interference.

As said previously I would be recording these strange results and also noting symptoms as it’s not always easy to see progress clearly, especially if symptoms radically change as opposed to improving or deteriorating. Apart from symptoms sometimes being confusing, our emotions can magnify or make things seem inconsequential, and constant worry and stress can have detrimental effects on thyroid hormones.

It would be great to understand your results but sometimes labs just don’t make sense and as long as we feel ok (or feel we heading in the right direction) we have to go with that. Remember labs only represent what is 'free' in the blood stream ready to be activated.

General TFT's do not tell us the amount of T4 transporters, of cell transporters or hormone uptake by nuclear membrane receptors. T4 works very differently to T3 right down to its transportation and there are many reasons for your not getting on with Synthroid although your labs were good.

These things the labs can't tell us are all improved with the general information given on the forum such as maintaining adequate iron and optimising nutrients. Often members find by concentrating on the essential cofactors health starts miraculously improving as the performance of thyroid hormones steadily betters.

It might even give you more confidence if you took daily morning temps and pulse, and try hanging about on these meds at this dose for a good while to allow a true representation to be established. Good luck with endo appointment 🤗

[Litatamon in reply to radd]

KoThanks radd, Appreciate it. I simply want to let go that it doesn't make any sense, in that I feel *okay*. And *okay* despite all these abysmal labs is really a blessing. Way better than how I felt on that one good lab.

I appreciate all your insight. I have no signs of a pituitary tumour, so no need there. And am already on ordering the betaine/pepsin.

As usual, so informative. Thank you.

And since I doubt the ox took up cycling, way too heavy for such endeavours 😉Insert smile & wink - I will look up ox bile - have never heard of it before.