Hashimoto: I have had hashimoto's thyroiditis for... - Thyroid UK

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Hashimoto

DebbieLynne profile image
23 Replies

I have had hashimoto's thyroiditis for about five years now. Synthroid does not seem to help. I can be on 100mg and my tsh will be near 400. Three months later it will be .03 taking the same 100. I have been on every dose possible including switching every other day. What I can't seem to find an answer to is what happens when my thyroid is completely destroyed?

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DebbieLynne profile image
DebbieLynne
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23 Replies
SeasideSusie profile image
SeasideSusieRemembering

DebbieLynne Adopting a strict gluten free diet can help reduce the antibodies, many members here have benefitted from this. Gluten contains gliadin which is a protein thought to trigger antibody attacks. Also, supplementing with selenium L-selenomethionine 200mcg daily helps, as does keeping TSH suppressed by taking the appropriate amount of Levo.

chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

When your Thyroid is completely destroyed you will have full blown Hypothyroidism.

DebbieLynne profile image
DebbieLynne in reply toSeasideSusie

Thank you. I have already been diagnosed as gluten intollerent, so I have been off gluten a long time. It is now just a way of life for me. I will definitely try the selenium. Can I get this at a health food store?

SeasideSusie profile image
SeasideSusieRemembering in reply toDebbieLynne

Being in the UK, most decent brands here are generally available online and that's the best place to buy. Not sure what's available in health food stores where you live but get a quality brand which states selenium L-selenomethionine.

DebbieLynne profile image
DebbieLynne in reply toSeasideSusie

Thank you. I will try this. What all does it help you with?

SeasideSusie profile image
SeasideSusieRemembering in reply toDebbieLynne

Selenium can help lower antibodies and helps with conversion of T4 to T3

TOberley profile image
TOberley in reply toDebbieLynne

I take 2-3 Brazilian nuts a day to get my selenium I need, and it really works better than supplements for me, I sleep soo good when I eat them!more energy too!

Clutter profile image
Clutter

DebbieLynne,

Are you sure that TSH was 400? If so, I would say your thyroid has already packed in? There is no need to adjust dose because TSH is 0.03 particularly if TSH rises when you reduce dose. Keep it stable at 0.03 on 100mcg.

Usually when the thyroid is kaput Hashimoto's burns out and levels become much more stable and dose requires adjustment infrequently.

DebbieLynne profile image
DebbieLynne in reply toClutter

Why don't they just take it out?

Clutter profile image
Clutter in reply toDebbieLynne

DebbieLynne,

They do sometimes in the USA but I don't think it's done in the UK. Shame because it was Hash's which was making me feel so ill before my thyroidectomy and the symptoms improved almost straight away once thyroid was gone. My doctors wouldn't believe that Hashi's caused symptoms and told me they were non-thyroidal because I was euthyroid. Not that they bothered a whit about the supposed non-thyroidal symptoms.

DebbieLynne profile image
DebbieLynne in reply toClutter

I am so glad for you that you are feeling better. I feel like I will never get better. My body aches and I sleep about 85% of the day

grandmahill profile image
grandmahill in reply toClutter

I was always under the impression that they only removed the thyroid when it was hyper because there is no way to slow it down but when it is hypo you can always take medication to increase function! Yours is the first hypo i have ever heard of being removed. Interesting, but not sure I'd want it removed if not necessary. Still, glad you are feeling better. Wish i could say the same!!

Clutter profile image
Clutter in reply tograndmahill

Grandmahill,

It was necessary. I was euthyroid with Hashimoto's but it was removed because I had thyroid cancer and that's what made me hypothyroid.

If you write your own post and include your recent thyroid results and ranges I can take a look and see whether you are optimally dosed.

pixychik profile image
pixychik in reply toClutter

Hi, I've been reading this post and would like to have you take a look at my most recent thyroid levels if you would? I have hashimoto's and keep having the ups and downs......will feel a lot of energy for several weeks then crash and have aches pains and severe fatigue. Currently on 75 mcg of Synthroid after being on 88 mcg of Synthroid for 15 years and was on too much.

T3 1.47 (2-4)

T4 1.25 (0.80-1.80)

TSH 1.51 (0.27-4.20)

Clutter profile image
Clutter in reply topixychik

Pixychik,

Please write a post of your own with this information and I will respond.

pixychik profile image
pixychik in reply toClutter

thank you I just did :)

Nanaedake profile image
Nanaedake

Believe me, thyroidectomy brings its own problems and there are risks with surgery. You don't want to lose your parathyroid glands that are embedded in your thyroid, then you would have calcium problems too!

DebbieLynne profile image
DebbieLynne in reply toNanaedake

But don't all your thyroid issues go away?

Nanaedake profile image
Nanaedake in reply toDebbieLynne

No, they don't, you are then totally dependent on the quality of the Levothyroxine, you are still hypothyroid so you can still suffer low stomach acid which affects vitamin levels and you still have to monitor the stability of your medication and have blood tests.

grandmahill profile image
grandmahill in reply toNanaedake

Not that I am advocating for thyroid removal, especially considering all the other problems that you still have to deal with, but they can remove one or part of one parathyroid gland and transplant it into the neck or shoulder area and then hope it "wakes up"... this is sometimes necessary when someone has multiple enlarged glands or adenomas that require removal of all 4 glands .. or 3 1/2 with 1/2 transplanted. I am curious if anyone with hashimoto's has had negative anti-nuclear antibodies (ana)?

Nanaedake profile image
Nanaedake in reply tograndmahill

True about the parathyroids but it's a risk and not always totally successful.

ChrisH100 profile image
ChrisH100 in reply tograndmahill

Yes my ana came back negative even though I've got hashimotos which I too was curious about as I would have expected a positive read...

Sunbeam71 profile image
Sunbeam71

I have recently been diagnosed .... totally confused, very little explanation from GP, I was given 25mgs of Thyrocene (2 days ago) to take daily and told to get a blood test in 6 - 8 weeks. That was it, no further advice, explanation or offer of support.

I had originally gone to the GP because I thought I was sensitive to gluten, I was increasingly exhausted, my hair falls out excessively, sudden weight gain and I suffer constant diarrhoea, however test came back clear. Reading through various posts here I wonder if I have Hashimoto? So .... does anyone know if I could have Hashimoto even though the blood test for gluten was negative?

I have adapted a gluten free diet just in case. After two weeks the diarrhoea has greatly improved but other symptoms persist, weight gain and energy levels are most definitely worse.

Many thanks in anticipation .

ttaylor000528 profile image
ttaylor000528

I was diagnosed with hashimotos in march of this year. My doctor recommended that I have my entire thyroid removed. I had it removed on June 1st of this year and have had no problems. I'm on 88 mcg of synthroid. Hashimotos constantly attacks the thyroid so meds will never be right. My doctor said if the thyroid is removed there's nothing to attack so you really do not have hashimotos anymore. I'm in the United States so I'm not really sure how the U.K. Health system works, but I'm doing great!!

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