Strange symptoms on NDT

[Rimz]

Hi everyone,

Hope there is someone out there that can help me or even has experienced the same as me. To make a long story short and give you a little background info; 

I'm 34 years old, have had  hashimoto's since my teens. Thru the years I have experimented with different synthetic thyroid meds such as T4, T4+T3 and even only T3. I have'nt feelt good/optimal on neither of them for different reasons to be honest. I have gone a few months now without any thyroid meds and I have been feeling totaly drained, no energy at all, constant adrenaline rushes at night and practically living dead. My tests showed;

TSH 2,4 (0,3-4,2) 

T4 16 (12-22) 

T3 3,8 (3,1-6,8) 

I live in Sweden so these are the reference ranges here in parentheses.

I have seen so many doctors/endos and no one is willing to prescribe NDT so I took matters into own hands and ordered online thinking maybe this would finally be the right thyroid med for me besides working on my immunesystem.

So I started out with 1/2 grain Westhroid last saturday taken sublingually and I have been experimenting 2-3 doses spread out the day, total 1 grain-1 1/2 grain. Monitoring my temp and what I'm feeling cautiously. Because of feeling a little bit uncertain what the NDT is doing to me I had new blood tests yesterday that showed;

TSH 0,7 (0,3-4,2) 

T4 14 (12-22)

T3 4,6 (3,1-6,8)

I have feelt more energy and a little more like myself, no adrenaline rushes at night, less brainfog and better memory but some strange symptoms that was'nt there before NDT are worrying me. My gums are hurting, and some parts look red and inflammed. My throat was fine the first days but now it have been starting to hurt, like there is activity going on with my immune system. Bowels movement have been slower than usually and my hands and feet still feels very cold. My mouth feels very dry and my tongue is more white coated. Also I feel a little bit on the low side, maybe it is because I'm not quite sure what to think of all this. I feel as if I'm hypo but my tests show I'm not. I dont know if I should stop the NDT or continue and on what dose since its gone 1 week since started. Any thoughts of what the NDT is doing to me and what I should do? Sorry for long post, I wish I had a good doctor to work with to be honest but they are very rare 

[Hidden]

Hi, I started NDT about 10 days ago now and I had a few days of feeling great, then terrible.  It may be that you will need to increase the dose soon. I haven't had any gum problems but I am more thirsty than usual, also my throat was sore for those 2 days. I am unsure if mine was a virus though as my kids have had one recently. I am sure someone more experienced can answer this properly for you.

[Rimz in reply to Hidden]

Thank you katiekatie for replying! Do you have Hashimoto's as well?

[Hidden in reply to Rimz]

Hi, sorry only just seen this. I am unsure as my doctors is just rubbish and left me for years hypo. It runs in my family though along the female line. My mum has it, also my two aunties and it started for them about the age it started for me. I had a private test which only tested T4 and T3 which said I was very low on both. I plan to get a better intensive test soon. The nhs tested my TSH in 2008 and that came back normal but whenever I go to them they just say it's gladular fever! I found one doctor who took one look at me and said it's your thyroid but I have just been unable since last year to get back in to see her. I just give up with it all. Rather just self medicate and monitor myself. My symptoms were so bad before I started NDT that I just couldn't function, hair falling out, swollen all the time, dry skin the works. Hope you feel better soon. 

[Rimz]

Hi eljii, so what are you saying..that my gums may be attacked by the porcine ab😳?? 

[shaws]

As far as I understand NDT is not sublingual. You have to swallow tablet with one glass of water to allow the stomach to do the the work. You then have to take note of your pulse/temp several times a day and increase the dose about every 2 weeks. I would take 1/4 at a time and then it's easier to drop back when you are nearing optimum dose.  Instructions:

"You should take your Westhroid Pure tablets 16.25mg with water on an empty stomach, preferably 30 minutes before a meal. The dose of Westhroid Pure that you take should be as recommended by your doctor. The usual starting dose is 16.25 mg Westhroid Pure (¼ grain), with increments of 16.24 mg (¼ grain) every 2 to 3 weeks, depending on the levels of T3 and T4 measured in the blood during treatment, so blood monitoring is important while you are taking Westhroid Pure. It usually takes several weeks to see normal levels of blood thyroid hormone levels after starting treatment and you may need to take Westhroid for the rest of your life.

How long should you take Westhroid Pure?

It usually takes several weeks to see normal levels of blood thyroid hormone levels after starting treatment and you may need to take Westhroid Pure tablets 16.25mg for the rest of your life"

Although this refers to Westhroid Pure it has had a name change to WP Thyroid.   

[Rimz in reply to shaws]

Thank you for this, Shaws. I have read it before ordering it. Reason why I started on a little higher dose is because before when on thyroid med I have been use to actually getting higher TSH in the begining when on to low dose. So I thought its best to start a little higher. Besides I dont feel hyper, only some strange symptoms. On my bottle it says 1/2 grain = 32,5 mg, With the ratio T3 = 4,5 mcg and T4 = 19  mcg. 

[shaws in reply to Rimz]

1/2 grain of NDT is approx 50mcg (the effect might slightly differ in some patients). 1 grain of NDT is around 100mcg of levo. It's how you feel which is the best judge with no hyper and clinical symptoms going.

I hope you feel better soon.

[kathy1029]

it took my body about a month to get used to the t3 my body was lacking for years, i stuck with it and kept a journal for each day, i started on one 60mg tablet in the morning and about two weeks in, took another half tablet in the afternoon, i got some weird symptoms in the first few weeks, like electric shock in different parts of my body (leg, then foot, arm) but like you, the foggyhead went away as soon as i started taking it, for me, that was a good indicator this medicine was going to help me in the end. i don't know what to make of your gums being inflamed, could it be coincidence?  the NDT i take isn't coated, i wonder if the coating has anything to do with that. i hope it all evens out and you get better soon

[Cavalli13]

Hi have you check your vitamins before start with the ndt? Iron ferritin vitamin d and b12 they need to be in good range.. Then the cortisol is very important too.

Like you I tried before ntd but it doesnt suit me, I have high antibodies around 1000 and I felt like crap...

I am using now T3  and T4 and  seriously considering to try naltrexone to lower my antibodies. 

What about yours? Are you gluten free? I am since may and my antibodies lower from 1400 to 1000 but is not low enough yet..

Well I hope you will feel better soon and listen to your body maybe this brand doesnt suit you or you will need time to adjust to it.

[Rimz in reply to Cavalli13]

Thank you cavalli13, hope you will feel better too, this disease sucks! Yes, I get iron injections when needed, I supplement d vitamin and b12 is actually good. Yes have been gluten and dairy free for years. When newly diagnosed my TPO ab were 298, last time I checked a few months ago I had a level of 101, so its moving. I supplement with selenium but dont know if its thanks to it. When you say you felt crap on NDT, in what way?

[Clutter]

Rimz,

The T4 and T3 molecules in NDT are too large to be absorbed sublingually.  It may be the fillers in NDT taken sublingually which are making your mouth, gums and throat sore.

NDT is designed to be taken with water and for maximum absorption should be taken 1 hour before or 2 hours after food and drink, 2 hours away from other medication and supplements, and 4 hours away from iron, calcium and vitD supplements. 

You've increased dose too quickly and may be taking too much NDT.  The improvement in energy you've felt will be due to the T3 in NDT.  Usual advice is to start at 1/2 grain and increase in 1/2 grain increments every 2 weeks.  I think it might be better to stick at 1 grain split into 2 doses for 6 weeks and have another thyroid test before raising further.  It takes 7-10 days for the thyroxine in NDT to be absorbed before it starts working on symptoms.  It will take 6-8 weeks for T4 and T3 levels to build and for symptoms to begin improving.  Symptoms may lag behind good biochemistry by 2 or 3 months. Cold feet and hands persist as a symptom for me and I've been optimally medicated for more than 2 years.

thyrophoenix.com/adjusting_...

_______________________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

[Rimz in reply to Clutter]

Thank you Clutter. Yes I think its a good idea to take things a little bit slower, strange though I dont feel hyper. Besides from the strange symptoms mentioned earlier I got my period today..and it was expected next week. Have always been on the clock when it commes to that. Interesting with the molecules beeing to large, reason why I thought trying sublingually is because I wanted to avoid any interference with it not being absorbed fully. Westhroid Pure is stated hypoallergenic with only 3 fillers/ingredients besides thyroid. Do you have Hashimoto's?

[Clutter in reply to Rimz]

Rimz,

You aren't hyper because your FT3 is within range.  Staying on 1.5 grains when the thyroxine kicks in may make it go over range in a few weeks though and then you will be biochemically hyper, even if you don't *feel* hyper.

You may have some strange effects and sensations as the NDT starts improving your metabolism.  They even out after a while.

I did have Hashimoto's.  Bloods were euthyroid but I felt mostly hyper and after a few months felt I was swinging between hyper and hypo.  I had a thyroidectomy as I had thyCa and Hashimoto's symptoms cleared immediately.

_____________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

[Rimz in reply to Clutter]

Hi Clutter, ok I guess I will have a little bit more patience with the symptoms, I pray to God this will work out and they will even out. 

I see, I have felt hyper too, swinging back and forth. Crying to my now ex-endo that I dont understand why I feel so drained, tired and loosing weight when my blood tests show I'm not hyper. I now understand that it was part of the constant adrenaline surges causing it because of insufficient amount thyroid hormones. May I ask what thyroid med you are on?

[Clutter in reply to Rimz]

Rimz,

Things will improve when your thyroid levels are better but it does take a while.

I'm taking synthetic Levothyroxine (T4) and Liothyronine (T3).

[Eliara2 in reply to Rimz]

Rimz, how are you doing now? I take NDT and get same sore throat, donno what to do? =(

[vienna2010]

I am taking some ndt and don't have a problem absorbing it sublingually. It doesn't affect my gums or teeth. 

[Hidden]

Rimz,

Could I ask you to PM me where you bought Westhroid?

[Eliara2]

Rimz, how are you doing now? I take NDT and get same sore throat, donno what to do? =(