No thyroid ....?

[Bridgette68]

Has anyone one else had their thyroid dry up through not having Levo early enough or just not having yhe right meds ?

[dang]

Levothyroxine is a replacement hormone and doesn't affect or "save" the thyroid per say, it just gives your body the hormone that is missing when you become hypo. Do you have Hashimoto's? Is this what you are referring to when you say the thyroid dry's up?

It's possible that if you take high doses of levo to suppress TSH activity you can reduce or slow down the attack on thyroid, but few doctors ever suppress TSH on levothyroxine.

[Bridgette68 in reply to dang]

I suffered for many yrs without medication unknown as doctors didn't Donte checks for thyroid issues ........ but eventually after finding out there was an issue and starting on Levo and after seeing several endocrinologists the last one said I don't have a thyroid gland anymore .....!?!? Which confused me even more as I had been taking Levo for over 8-10 yrs so what happened I asked ..... he just said it's dried up .... from touching my neck !!! I had started getting lumps on the side of my neck by my ear and down and they were hard lumps ..... he said it may be a reaction to the meds ... can you change them .... we don't have any alternative so no said the doc .... that left me feeling like I'd wasted yrs trying to get it sorted and got told put up with it

[Coachv in reply to Bridgette68]

HI this sounds like hashimotos, it is a major cause of hypothyroidism. It is an auto immune disorder where your body attacks the thyroid cells and eventually the thyroid is destroyed. Currently this can't be 'cured' so the thyroid replacement hormone we take replaces that which our own body would have been producing previously. So being treated or not treated won't affect the course of the destruction of the thyroid, but treatment should make you feel better.

[dang in reply to Bridgette68]

Hmmm... I've never heard of levothyroxine causing a reaction that would dry up the thyroid. What is possible is that if you were given a dose that suppressed your TSH (causing your thyroid to not function at all) it could atrophy and become sluggish, this is what I've heard I have no evidence of this. Do you have some recent test results?

Do you know if you have antibodies? If so it's likely that your thyroid has stop functioning from the condition itself, doctors usually don't prescribe high enough doses of levo to "stop" a thyroid gland.

[Bridgette68 in reply to dang]

The reactions and allergies I started getting was when I thyroid wasn't working properly and I felt very sluggish but now I don't have a thyroid gland and feel a bit lost trying to figure out what to do

[Bridgette68 in reply to dang]

I wonder if it was cos the issue was diagnosed so long .... yrs I fact after I repeat my went to different doctors regarding it and then when I did start in meds it had already dried up ???

[dang in reply to Bridgette68]

Not being diagnosed for a long time could definitely cause some issues as the body would struggle with low hormones and likely some vitamin deficiencies (I mentioned this in my other reply).

[Bridgette68 in reply to dang]

Hashimoto's isn't a term I'm familiar with and it's never been used in any consultations here in the U.K. That I've had.

Should I be aware of anything regarding this in my meds ??

Sorry if I sound confused .... it cos I am

[dang in reply to Bridgette68]

I understand it can all be very confusing, and doctors often don't tell a lot to patients.

Hashimoto's is the most common cause of hypothyroidism, it is an autoimmune condition where the immune system targets the thyroid gland. Many doctors don't even bother testing because no matter what the cause of the hypothyroidism the treatment is the same. Generally people are given levothyroxine to replace the hormones they are lacking (due to a sluggish or non-working thyroid), not everyone does well on levothyroxine alone and some people require the addition of T3, this is an active thyroid hormone and it is the one which is often responsible for our symptoms, if it is too low people often struggle with weight gain, feeling cold, hair loss, tiredness, brain fog, and other symptoms.

In order to know if you have Hashimoto's you'd have to get a blood test for thyroid antibodies, another way to diagnose is through ultrasound of the thyroid, if the condition has progressed far enough the destruction would be visible.

By far the most common reason for people no longer having any thyroid function is Hashimoto's, or surgical removal of the thyroid gland due to various other diseases and conditions. Generally speaking when someone is hypo without having Hashimoto's the thyroid continues to putt along, but it's just sluggish.

So whether or not you have Hashimoto's it doesn't change the treatment. But it could give you an answer as to why your thyroid no longer works. In any case if you still have symptoms you may well be undermedicated, or you may need the addition of T3 (which is common with those who no longer have thyroid function) but if you live in the U.K. it could be hard getting a prescription for it. NDT is another possible medication made from pigs thyroid, it contains both T4 (levothyroxine) and T3. You can search in this forum and get tons of information about these medications.

It's also good to get vitamins D, B12, folate and ferritin tested. These are often low in hypo patients and if they aren't optimized patients often have symptoms. They are also required for proper uptake and conversion of thyroid medication. Doctors won't treat these vitamins unless you are completely deficient, but symptoms and problems usually occur before deficiency in hypos, so if you have such results feel free to post them in a new post to receive advice from members.

[Bridgette68 in reply to dang]

Thank you some useful info that'll help 🙂

[webar4780]

Bridgette68

I have recently had an ultrasound of neck. Was informed that thyroid non existent, it had shrivelled up.

I am due to see consultant in August and will post with what he says.

Yes, I was confused too. Posted here. Clutter administrator replied saying possible had hashimotos. I think I did have a hashimoto crisis 2 years ago. Never diagnosed.

I have been hypothyroidism 27 yrs, managed very well for 25 years on levothyroxine. Then, became very unwell! GP not really interested. I asked for refer to endocrinologist as my neck area and swallowing so uncomfortable, bedridden 2 weeks,...

Anyway, cut very long story short, diagnosed last year with Sjogrens syndrome as well. All help I have had has been through desperation, researching myself, and gaining knowledge and support on sites like HU.

Having no support, no explanation from GP, hindered my getting well as I became driven saving myself.. I felt that ill! Thus, it is little wonder my thyroid gave up!

I hope you get some answers soon and feel better.

We learn more on this site, it is my go-to first call. I tend to see GP only if I need antibiotics now.

[webar4780]

Ps I didn't get endocrinologist app. She didn't think there was a problem. I have never seen an endocrinologist.

However, as I developed a full body rash, my dermatologist suggested I was being over prescribed levothyroxine. Subsequently, GP changed the dose twice. I am just about feeling better with thyroid.

Dermatologist also did bloods that suggested sjogrens and I was referred to rheumatologist. Now, those symptoms are persistent! But, as I have created a great team around me, I feel I manage fairly well.

Good luck with your journey.

[Bridgette68 in reply to webar4780]

Hi there

I’ve started to get some very bad headaches of late and last week I stopped the Armour and the eased off !!!

Coincidence maybe and not good to stop my mess but it helped

So now think I need more bloods done seeing as it’s been over a yr since my last tests !!!

Have you had any headache symptoms ??

[webar4780]

Hi

I had a major headache the day I collapsed nearly 3 years ago.

Of late, I am getting headaches quite frequently. I am used to them now. I take paracetamol for a few days, and rest when possible.

Times like that I do wonder why. Though, with autoimmune thyroid, sjogrens, ?lupus, I am aware autoimmune disease can and do overlap.

I sincerely hope you get headaches sorted soon. Blood test is a good idea.

Take care. X