How can I feel normal when switching NDT?

[Chett]

Hello lovely people.

I live in the US and have felt great on 162.5mg NatureThroid for years. It was discontinued at the end of 2020. My doctor substituted the same dose of NP thyroid, but I felt very hypo. So she then put me on 180mg of Armour, but I felt no better. So, for the last 3 months I have added an extra 30mg each month of the NP (I had a lot left). So I’m now on 180mg Armour and 90mg NP. My fatigue has gotten better for most days, but I still have muscle pain. I know that the different NDT’s are supposed to be close in strength, so why am I having to increase the dosage so much after I stopped the NatureThroid to feel ok?

[Hidden]

Could it be that the fillers in Armour and NP don´t agree with you? According to the STTM, there are no good brands of prescription NDT left after various reformulations and recalls.Could you try an alternative such as Thyroid-S? Many find it to work better than prescription NDT these days. Or possibly Erfa if you can find it in your area, although the STTM claims that too is problematic nowadays?

[Chett in reply to Hidden]

Hello PurpleCat71, thanks for the response. I did think of that, because I was on Armour years ago and did great until they changed it. But NP has no fillers. So I should be fine on that. If you’re allergic to the fillers, what are your symptoms? I’m just feeling very hypo: fatigue, muscle pain, nerve pain, constipation. I just assumed I needed to increase my dose. Is it possible that my thyroid completely shut down when I stopped taking the NatureThroid?

Fillers used in thyroid meds

[Hidden in reply to Chett]

I am not sure what symptoms are as I have never had problems with fillers myself, but I am sure others will chime in!The STTM has reported NP working less well and having potency problems, so you could be undermedicated as a result. What are your TSH and free T3 levels?

[Chett in reply to Hidden]

On 8/21, my labs were, (TSH w/reflex to FT4) = 0.01. ( T4 FREE)=1.8. They didn’t do T3.

[Hidden in reply to Chett]

What are the reference ranges for T4? It´s strange that they don´t test FT3 when on NDT...

I recently saw that the STTM - which has always advocated NDT - are now telling people to switch to T3 + T4 due to all the potency problems with NDT. If your doctor put you on NDT; do you think s/he would be willing to prescribe a synthetic combo for you?

[Chett in reply to Hidden]

Oh sorry. The reference range is 0.8-1.8. Yes, she would give me a synthetic, she said I could have Cytomel.

I was on Synthroid 20 years ago, but I didn’t do well, but maybe if I get the Cytomel as well, I would feel better.

[Hidden in reply to Chett]

So, your FT4 was at the very top of range on NDT....which is a bit strange as the T3 in NDT tends to lower FT4 and the TSH. I personally don´t think NDT is magical. It would seem the T3 in it is what makes people feel better on it, NOT the T1, T2, or calcitonin (although some alternative practitioners claim it). So, you could get the same results on Cytomel + Synthroid as you did on NT. Some people do feel the T3 in synthetic drugs is too quick-acting for them and prefer NDT as most of the hormones in it are bound to transport proteins so not immediately available to the body, but if you have no problem with that then a synthetic combo should work just as well. And would most lilkely save you some money too...if NDT is as expensive in the US as in Europe, that is...!

[Chett in reply to Hidden]

Thank you so much for your thoughts. If I don’t start feeling better, I will definitely consider going back on Synthroid with Cytomel. It sucks that the drug companies keep playing with their formulas when so many people depend on their products to live a normal life.As far as cost, between Medicare and Tricare(my husband was a marine), our health care and medications are mostly free.

Thanks again.

[Hidden in reply to Chett]

Wow, that´s really great...where I live, NDT is considered organ therapy so not covered by health insurance...they claim that, since it cannot be granted a marketing authorisation due the "grandfathering clause", it is not considered an approved drug and therefore not reimbursable...so some things most definitely are better in the US...!Don´t forget, there is always Thyroid-S from Thailand (available OTC). Many people are doing great on it, and even the STTM claims it´s probably the best NDT around these days. There is also Real Thyroid from Vietnam, but I don´t know enough about it as it only appeared on the market a year or so ago...but it does contain seaweed and iodide potatssium so not sure if that is a good idea in the long run (iodine).

It´s a shame two of the three Thai brands were discontinued due to licensing costs or we would have had more options...now, we are like puppets on a string every time a drug company decides to reformulate a drug

😡

[Chett in reply to Hidden]

I do have some Thiroyd, from Thailand that I purchased a couple of years ago as a standby. Oh, and my know-it-all husband reminded me that our health insurance comes out of his retirement pay, but it’s only $69 and includes vision and dental.

[greygoose]

Is it possible that my thyroid completely shut down when I stopped taking the NatureThroid?

Your thyroid shut down around when you started taking Nature Throid. As your TSH dropped, your thyroid produced less and less hormone. Which is perfectly normal. The thyroid cannot work without the stimulous of TSH. Nature Throid, Armour, levo, T3, etc. are Thyroid Hormone Replacements, not thyroid hormone top-ups. Doctors just don't seem to understand that.

As for reactions to fillers in tablets - and all tablets must have fillers or they couldn't be tablets - I would imagine they vary from person to person, just like hypo symptoms. We're all individuals, after all.

[Chett in reply to greygoose]

Hi Greygoose.So if my thyroid has been non functioning for years (I’ve had Hashimoto for 20 years), then my hypo symptoms are from the switch in meds due to the different fillers? Is it possible that the fillers are preventing the proper absorption of the thyroid hormone?

[greygoose in reply to Chett]

Oh, well, if you've had Hashi's for all that time, it's possible that you have no functioning thyroid left, anyway. Hashi's destroys the thyroid.

No, I don't think the fillers will prevent you from absorbing the hormone. They just don't agree with some people. One example is lactose in pills with people that are lactose intolerant. That could upset them greatly. Can you compare the fillers in various brands of NDT to see what they have in common and what is different?

Or, as has been said, it could just be that the new brands are less potent. If increasing your dose makes you feel better, then there's no reason why you shouldn't do that.

[Chett in reply to greygoose]

Thanks Greygoose, I think you’re right and they’re less potent, because I don’t think I have any food allergies, I can eat pretty much anything, except really spicy food, then I get heartburn.

[greygoose in reply to Chett]

Which would probably mean that you have low stomach acid - most hypos do. And, if your low stomach acid has got worse recently, then that could be having an effect on how well you absorb your thyroid hormone.

[Chett in reply to greygoose]

Damn, you’re good. I would never have thought of that.

[greygoose in reply to Chett]

Thank you.

[Chett in reply to greygoose]

And so modest too. I love it!

[greygoose in reply to Chett]

😘

[susanmhall62 in reply to Chett]

I started taking my morning Armour Thyroid dose of 180 mg with a glass of water & a tablespoon of apple cider vinegar to improve stomach acid and thyroid hormone absorption. I dose the Armour Thyroid twice a day; 90 mg in the morning and 90 mg at bedtime. My thyroid labs are close to optimal. Currently working on optimizing vitamin levels ie. B12, D & Omegas.

When I was on the T4-T3 synthetic combo I was taking Tirosint & Cytomel. Tirosint might be a substitute for Synthroid if you can access it.

[Chett in reply to susanmhall62]

Thank you. I’ll have to try that with the vinegar.

[Hidden in reply to Chett]

I have been to doctors who told me we would "jumpstart" my thyroid gland again, like an old car...it did not work. Some suggested iodine, some short-term thyroid hormone replacement to "wake up" the thyroid gland again...like it had just gone to sleep and would wake up anytime soon. One doctor told me high doses of vit B12 taken sublingually would calm antibody activity down. Another doctor told me right after I was diagnosed with Hashimoto´s 22 years go that keeping the TSH betwen 0.05-0.3 on high enough doses of levo would make the antibodies go away and spare my thyroid....last year, I found out there was only 1/10 of the gland left compared to the ultrasound I had right after I was diagnosed in 1999. So , nothing at all doctors suggested did anything in halting the autoimmune attack and saving my thyroid gland. I have come to believe that, taking adequate amounts of thyroid hormone replacement, will shut down your remaining thyroid gland function as the TSH production from the pituitary gland will cease and the thyroid gland will no longer be stimulated to make hormones. But I don´t think that is a big problem...you simply replace the hormones your body is no longer making on its own. If all it needs is T4 and then it takes care of T4 to T3 conversion itself, fine. If not, you add enough T3 to make symptoms go away. I think one problem with modern treatment of hypothyroidism is to keep people on tiny doses of thyroid hormone replacement (levo) in order not to shut their thyroid glands down...instead of just letting them take whatever meds they need for symptom-relief, and keep increasing them until they get there.

That is why I opted for self-treatment. I´ve had it with doctors telling me they know what I need when it´s obvious to me they are wrong. Sorry to be ranting, but I am just so fed up with doctors...!

[Chett in reply to Hidden]

I read so much info online from doctors who say they can put Hashi in remission so you won’t need thyroid hormone.I’ve never been told how much damage has been done to my thyroid. What are you taking if you only have 10% of your thyroid left.

[Hidden in reply to Chett]

I am switching over from levo to Thyroid-S. I´m currently in the process of raising Thyroid-S every two weeks and lowering levo at the same time. I decided to do it slowly in order not to stress my body. I ended up needing 200 mcg of levo daily just to feel human. I probably would have needed a much higher dose had I stayed on levo only...some say they need 250-300 mcg daily or even more. But I decided it was time to add some T3 to the mix. Although I have only added 1 grain of NDT so far, I can tell an big difference: my hands and feet are no longer ice cold, and I have more energy. It´s like my body is telling me: "hey, isn´t there more where this came from?!". So, you could say I´m doing the same thing doctors used to do back in the good old days when they did not have ultra-sensitive labs or levo at their disposal, but only NDT and symptom-relief to go by...sometimes, I don´t think it has to be more complicated than that. Easier said than done, I know, but remember: I am doing this without a doctor. I listened to doctors for 20 years and it did not do me any good in the end.

[Hidden in reply to Chett]

PS. In order to know how much damage has been done to your thyroid gland, you´d need an ultrasound. If you have had one before, you can compare them to see if there has been further damage. If not, you can see if it is damaged now. But, you don´t need an atrophied thyroid gland in order to be hypothyroid. I was told this only happens in a minority of patients with autoimmune disease, and that most thyroid glands remain of normal size even in end-stage Hashimoto´s.

[Chett in reply to Hidden]

Really? That’s interesting. My ultrasound was probably 15 years ago. Doctors in the US don’t seem to take thyroid problems seriously. They just shove Synthroid at you.

[Hidden in reply to Chett]

It´s the same in Europe, only Synthroid is called something different here. But doctors are not interested in anything except making you take levo until your TSH is anywhere in range. Many in Europe tend to consider the US the "land of milk and honey" when it comes to thyroid disease and treatment...after all, almost every ground-breaking book about thyroid disease has been written by either US patients or doctors...Mary Shomon, Janie Bowthorpe, Barbara S. Lougheed ("Tired Thyroid"), Amy Myers, Kenneth Blanchard, Richard Shames, John C. Lowe, Isabella Wentz...I could go on for ever. We don´t have many doctors like that in Europe, and the few who do exist tend to give up their license to practise medicine after being bullied by their peers and regulatory authorities. So, I´m afraid it´s a universal problem.

[Chett in reply to Hidden]

Have you read all of those books?

[Hidden in reply to Chett]

Oh, yes, and more…I have had more than 20 years to do so…! Mary Shomon’s ’Living well with hypothyroidism’ was the first one I ever read, right after being diagnosed, and it helped me more than any doctor.

[Chett in reply to Hidden]

Really, I’ve heard of her. Right now I’m reading a book called The Thyroid Cure by Michelle Corey, she advocates cutting out everything that is allergenic for 1-3 months, then adding them back gradually. She supposedly ‘cured’ her thyroid disease that way. I don’t know if I can cut everything out, I’d waste away.

[Chett]

It is very frustrating trying to come up with the perfect dose of the prefect hormone, especially since you have to wait so long between increases to see the results .Good luck to you on your journey, and thank you for your response.