dessicated thyroid is not working: I am having... - Thyroid UK

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dessicated thyroid is not working

patti1 profile image
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I am having difficulty with my thyroid medications. It doesn't seem to matter if I am on Synthroid or NDT. I feel so tired and zombie like after I take thyroid medicine. I can feel the fatigue kick in about a half hour after taking it. What could be causing this? Has anyone else had issues with fatigue and becoming ill after taking a thyroid dose? Please help me if you can. Seems I'm sick without my meds and sick on them too. It just sucks living like this.

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patti1
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shaws profile image
shawsAdministrator

First of all, have you had recent blood tests - which should be at the very earliest possible and fasting. You should also allow 24 hours gap between last dose of hormones and the test and take afterwards.

If you can post your results (if you've had them recently) with the ranges as labs differ and it makes it easier to comment.

What dose of levothyroxine were your taking (Synthroid) and what dose of NDT? If you've not had tests for a while, I'd suggest new test i.e.:-

TSH, T4, T3, Free T4, Free T3 and antibodies, B12, Vit D, iron, ferritin and folate. Deficiencies in minerals/vitamins can also cause symptoms.

shaws profile image
shawsAdministrator

This is a link which may be helpful:-

stopthethyroidmadness.com/n...

galathea profile image
galathea

Suppose you have checked your adrenal function with a saliva test?

Seabob profile image
Seabob

Hi patti1 I totally understand!!! T4 for some reason stopped working properly for me a couple of years ago...so I am now on NDT..I cannot tolerate a high dose..I have low adrenals but no doctor acknowledges my saliva cortisol test. I often feel drugged and I felt there was too much t3 even though am on a lowish dose,

I have been reading 'tired thyroid' book by Barbara Lougheed...she has struggled for years to find the right dose..she goes against the many internet sites and common thoughts about all this and it makes very interesting reading.

It's so hard isn't it..I recently asked for my TFT to be done and although the doctor requested it they didn't do it at all!

I am not advocating any particular approach am just like you trying to find out why we feel so rough after meds..as the others say blood tests can help.

I am now trying to add t4 to my NDT many do this with success. I am running out of options.

I wish you all the best!!

patti1 profile image
patti1

I have had many trial and errors and I have done most of what all of you suggested. I am better on NDT than Synthroid but I am still very very unwell. Currently I am trying a porcine compound capsule and I am not having great results. I think the worst is the mornings. I have a 4 year old and I struggle to hold it together to get her out the door and off to school.

On last count my TSH was 10.5. The other Thyroid related bloodwork is in range. I am depleted in vitamin D. I take B12 injections every 2 weeks. I am dairy and gluten free. I take a powdered multivitamin.

I know that I can feel well. When I started NDT (Erfa) I felt amazing. I mean the best I ever felt in my life. I thought I had won the thyroid lottery. I lost all of the bloat, my face stopped drooping, I went shopping without having to lay down afterwards. I felt happy and no brainfog. Then I crashed and I crashed so so badly. I've not been the same since.

Currently I am doing the whole trial and error thing again. I have since June developed a 'lump' in my throat that may or may not be thyroid related. I pay out of pocket to see a naturopath. I have to convince someone to send me to a ENT and a endocrinologist that believe in NDT medications. Not once have I had a doctor mention adrenals, cortisol, absorption issues. Its so crazy, right? I feel tired just from trying to manage appointments and figuring out where to call next.

Everyday it is hard. I feel thankful I can advocate for myself. Imagine all that are out there who are suffering and don't have any help at all.

Seabob profile image
Seabob in reply to patti1

Reading your post makes me want to weep with pure frustration at how very badly we are all treated with any thyroid issue..I am so very sorry to hear how poorly you are.

I totally agree about being your own advocate..I have had many chats with my sister about all this and she agrees that at least I am able to make decisions although not always the right ones because of access to the Internet or just being able to do so, I have had to change my job to a much lower paid one with less hours so now income is less but I can work, some days it's a struggle,

I hope you are getting good support from family and friends, it's hard for them to understand at times, I am very fortunate in that regard.

Everyone I have seen is quite dismissive of adrenals and yet they are clearly linked to the thyroid..it doesn't make sense!! I think their hands appear to be tied with what treatment they can give us. My Endo (only got referred relatively recently) is now monitoring me but only as regards TSH rather than how I actually am and how I live from day to day.

I too struggle first thing which I suspect is an adrenal problem..but how to fix it? Avoid stress..lots of sleep vit C..adrenal gland products which can get complex so I stick to the sleep, vit c can't avoid stress that's impossible! I get to work and usually feel pretty awful.

Can you supplement your Vit D? Am sure you have thought of that.

I think it's thr T3 in NDT which gives us the boost but maybe I am extremely sensitive and there's a fine line between the boost and feeling drugged!

We can only keep,trying and then one day feel better..there are many out there just like us so we can take some comfort that we are not alone in this seemingly endless struggle, X

Seabob profile image
Seabob in reply to patti1

Hi

There is also an excellent site called Inspire.com I have come across..I think it may be American..very helpful people on there as well who can hopefully help you x

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