Desiccated thyroid users only please - Thyroid UK

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Desiccated thyroid users only please

mikkymouse profile image
18 Replies

I may be repeating myself but many of you can understand my frustration at trying to get help. What I am interested in is anyone’s experience that was on a med like Synthroid ( I forget what they are called. Levox something) and switched to a desiccated thyroid. Was it a good choice to switch or not.

Thanks.

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18 Replies
greygoose profile image
greygoose

For me it was a very bad choice. I'm only well on T3 only. But, we're all different and you can guess what's going to be good for you by what is good for others. You have to try and find out for yourself. :)

mikkymouse profile image
mikkymouse in reply to greygoose

So what do you take? Just T3 or something like Synthroid. What were your symptoms when you felt bad. It’s such a long road to find help.

greygoose profile image
greygoose in reply to mikkymouse

I take just T3. Have done for a long time, now. My symptoms were just general hypo symptoms, but times ten - or even 100! Especially weight gain. I gained a ton of weight on NDT, and became practically bed bound. I'm not very good with T4 at all. I can tolerate a tiny amount. But in NDT there was far too much T4 and not enough T3, I can see that now. But, quite why NDT was worse than levo only, I really don't know. But it was.

Wishingwell profile image
Wishingwell

For me it was a good decision as switching to NDT eradicated my fibromyalgia ... we are all different if you feel unwell on levo then why not try something else?

mikkymouse profile image
mikkymouse in reply to Wishingwell

Unwell is a HUGE understatement. I’ve spent many day in bed which I hate because of being so sick.

I am guessing you haven’t seen most of my posts. Right now I’m going crazy trying to convince someone to prescribe me an NDT. I’m actually expecting a call any minute from my naturopath to see if she will give it to me. I’m at my wits end.

Thanks for answering.

Wishingwell profile image
Wishingwell in reply to mikkymouse

Why not self source? It's cheap from some countries. I self sourced for 2 years before getting NHS prescription and now after 11 months I am back to self sourcing as they can no longer prescribe out of area.

mikkymouse profile image
mikkymouse in reply to Wishingwell

I talked to my naturopath just now and she is prescribing it for me!!!! Yea! Now to see if it works. I wouldn’t even know how or where to self source from.

Greekchick profile image
Greekchick in reply to mikkymouse

Congrats! So glad to hear you got your prescription - hope it works out for you. All the best!

mikkymouse profile image
mikkymouse in reply to Greekchick

Thanks Elena, lol.

Yes, I am one happy camper I tell you. I will feel better when the med is in my hot little hands though. I wonder what dose she will put me on. I have faith in her which helps.

Greekchick profile image
Greekchick in reply to mikkymouse

Having trust in your medical professional makes such a difference. Post your progress - I really want to know how you manage since I am thinking about possibly switching at some point. All the best!

MaisieGray profile image
MaisieGray

I switched from T4/T3 combo to Naturethroid and then to ThyroidS, and then back again; and experienced no difference at all. But it can't ever be assumed that the experience of others will be your experience, you can only see how you are, by first hand experience.

mikkymouse profile image
mikkymouse in reply to MaisieGray

Thanks. I agree so it’s trial and error. I’m wo right now to see if my naturopath will give me THYROID.

mikkymouse profile image
mikkymouse in reply to mikkymouse

She gave it to me!!!! So happy but will it work? I can only hope.

radd profile image
radd

mikkymouse

After medicating Levo for four years and becoming further ill, I added T3.

My health improved hugely during the 6 months I medicated Levo + T3, during which time I discovered and addressed gut issues and nutrient deficiencies.

I probably would have stayed on T4+T3 forever but my local health authority withdrew it so I moved to another health authority who prescribed for an additional 3 months and then they withdrew it too.

So I made a successful switch to NDT which I self medicate.

It appears that NDT isn’t as tolerant of iron/nutrient deficiencies or cortisol issues as Levo and T3, so it is best to address these first.

mikkymouse profile image
mikkymouse in reply to radd

Thanks radd. That is encouraging. I’m a happy camper because my naturopath is giving me a prescription for Thyroid. If that doesn’t help I will try Levo and T3. I am convinced though that the Levo is what is causing the problem. Trial and I hope no error lol. I don’t know what a health authority is. Are you American? You have had your fun too. Always something.

radd profile image
radd in reply to mikkymouse

mm

I am English.

A health authority is a government agency responsible for NHS care in a particular area.

Clinical Commissioning Groups (CCGs) are responsible for the planning and commissioning of health care services within that local area. It is these CCG’s who are responsible for withholding our T3 meds. 😠

mikkymouse profile image
mikkymouse

Thanks. Your system is way different than ours.

radd profile image
radd in reply to mikkymouse

mikkymouse,

Pleased you have been given the NDT. Fingers crossed that your recovery journey now begins.🤞

If you haven’t medicated NDT or T3 before, it needs to be introduced slowly enough for the body to accept but quickly enough to keep TSH suppressed if you have thyroid antibodies. For dosing, etc info, post recent test results and members will comment.

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