My nightmare won’t end: Will this nightmare ever... - Thyroid UK

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My nightmare won’t end

Heatherv627 profile image
7 Replies

Will this nightmare ever end!! And I appreciate so much that I can come here for support! If I ever get my act together I hope to reciprocate!! Posted previously that I had been on Nature Throid 1.5 grains for 2 years but due to recall doctor switched me to 100mg Synthroid.

Just before the switch my labs were:

TSH

1.790

0.450 uIU/mL-4.500 uIU/mL

T4,Free(Direct)

0.78

0.82 ng/dL- 1.77 ng/dL

(T3), Free Triiodothyronine (T3), Free

2.4

2.0 pg/mL-4.4 pg/m

————————————————————

I tried the Synthroid for 7 days and felt absolutely non functional...edgy, short of breath, spacey, just awful. So she tried Tirosint 50 mg and that was just as bad! Stopped taking it after 5 days. She retested my levels at this time after 12 days of only t4 and here is where I was:

TSH

3.290

0.450 uIU/mL-4.500 uIU/mL

T4,Free(Direct)

1.21

0.82 ng/dL-1.77 ng/dL

Triiodothyronine (T3), Free

1.9

2.0-4.4

I gave my body a 6 day break where I could see alittle bit of overall improvement and then decided to take Nature throid 1.5 again since I have extra. I figured it’s the dose I had been on for so long!

I was hopeful!!! I felt alittle better day by day but at day 11 of being back on my 1.5 grain dose, I started to have some slight chest pressure and shortness of breath that sent me to ER. I was checked for heart attack and blood clot and sent home reassuring me heart is fine, but the symptoms have not let up. I have been having the tight feeling in my chest more and more, heart palps, severe shortness of breath, anxiety, and just overall ill feeling. What could this be? My numbers were never high enough to be over medicated on the dose I went back to for over two years could they? Am I just all screwed up now from the switch of NDT to t4 back to NDT? I just don’t know what to do and I am barely functioning as a human. I am so mad that I ever let this doctor talk me into t4 only. Any advice or input would be so appreciated!

Sincerely,

Heather

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Heatherv627
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7 Replies
Lora7again profile image
Lora7again

Usually with NDT you go by how you feel and you could always reduce by a 1/4 grain for a couple of days to see if some of the symptoms disappear and then try to increase again. When I took NDT I increased slowly and if I started to feel jittery I would decrease by 1/4 grain. It could be because you have been swapping your dose a lot and you really need to stick at one dose for a couple of weeks before changing it. This is my experience of taking NDT but hopefully some other members will advise you.

Heatherv627 profile image
Heatherv627 in reply toLora7again

It all just doesn’t make sense to me since I had been on this dose for 2 years and only switched for 12 days. Plus, the first 11 days back I felt okay so I just don’t understand why out of nowhere I’m having al these crazy symptoms. Thanks for your reply though!! I do hope someone has some knowledge into my situation!

Lora7again profile image
Lora7again in reply toHeatherv627

I think if it suited you for several years you should not have changed. I have taken both Levothyroxine and Thyroid S and I preferred the NDT.

Kell-E profile image
Kell-E in reply toHeatherv627

It kind of does make sense. You flooded your body with T4, now it is going to convert to T3 and rT3. Resuming NDT probably will favor the conversion to rT3 as TSH should drop due to the addition of T3. Just give it some time. It can take 8 weeks for the T4 levels to return to previous levels.

jrbarnes profile image
jrbarnes

Okay I did that for about 7 months this year and it totally messed me up. I didn't have good experience with nature throid but I experimented with NP thyroid and I found the liothyronine to be more potent in the latter brand, however it didn't work for me because the T4 and T3 is not adjustable but static. By the time I got to the amount of T4 that I needed in 120 mg it was simply too much T3 in addition to that. There are a lot of lucky people that natural desiccated works for them but then you have other people who are either going to be under medicated or over-medicated on that stuff. That sent me on a rollercoaster of trying a lot of different doses and then after the recalls I decided to go back to levothyroxine. The first several weeks are terrible and on top of that I had to switch brands of Levothyroxine a couple of times to find one that I didn't feel ill on due to inactive fillers. Each brand seems to have a different potency as well. Currently I'm sticking to the level thyroxine for 6 weeks even though it is a miserable experience. Then I will test to see what my T4 and T3 levels look like. I know some people add natural desiccated on to their levothyroxine or they add synthetic T3. Personally my T4 levels have to be over the top of the range just to get close to the top of the T3 range. What I might suggest is that you first focus on finding a brand of Levothyroxine that you feel tolerable on then you stick with that for six weeks to give your body the consistency that it needs when it comes to your thyroid hormones and get some testing done then look at your free hormones and decide if you have room to come up in your T4 or if you need to add T3 to it.

Miffie profile image
Miffie

I suspect you feel grim because you have swapped so much in a short space of time. Aided by a doctor who clearly knows very little testing you after 12 days and you changing meds twice in that timeframe. You should be at least 6-8 weeks between testing.

I was originally medicated on ndt, there was no levo at that time. Eventually I was moved to levo. It took years to finally raise my FT4 into range by then I was on 550mcg a day.

Finally I had to go back on ndt. This I started slowly increasing gradually until I felt right. Even 1/4 grain can make the difference between feeling good and having unpleasant effects of over/ under medication. I suspect you may be overdoing things much too fast.

Eliotf profile image
Eliotf

T4's half life is about 10-20 days, T3s half life is 6 hours. The different parts of the body take the T4 and convert it to T3. Also the TSH readings are a feedback loop. If you don't have enough t4 the pituitary puts out more TSH for the body to make more T4 and as everything gets in sync the numbers settle in. Switching from one brand and or one top of T4 it takes a long time (6 weeks) till things level out. That is why the doctor does test for that long.

I had enough T4 & TSH was 'normal' but I felt like crap the second half of the day. So we started me on T3 because my body was not converting the T4 to T3

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