Confused, hyper to hypo? Graves now Hashi's?? - Thyroid UK

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Confused, hyper to hypo? Graves now Hashi's??

wildpoppy profile image
24 Replies

Diagnosed Graves 4 years ago, have relapsed a couple of time (due to marital stress)... this last time just in July. T4 30, TSH <0.06

Took meds, with herbs etc and got levels down in 2 weeks... Docs titrated me off meds, and I have been off Carbi for 2 months.

Follow up blood test has come up as T4 15, TSH 3.0

Nurse said I seem to be going hypo! So need to retest in 2-3 weeks.

I don't usually recover TSH so quickly (historically it takes up to a year for my TSH to go up), but this time its shot high quickly? What could cause this?

Could this mean I have now developed Hashi's? Any one with any experience, I'd greatly love to know any ideas, TIA x

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wildpoppy
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24 Replies
wildpoppy profile image
wildpoppy

I meant to add, I have been having palpitations too... (which is what prompted the test thinking I'd gone hyper again)! Can low thyroid cause this?

Nanaedake profile image
Nanaedake in reply towildpoppy

So, what antibodies were tested to diagnose Graves disease.

wildpoppy profile image
wildpoppy in reply toNanaedake

Honestly, I can't remember what they were called! I think TSI maybe??... but I did check on this forum at the time that they had tested me correctly... I'm pretty sure it was a correct diagnosis (though you never know I guess)...

I am wondering why my TSH has come up so much/so quickly :-(

greygoose profile image
greygoose

Your past posts are all here, perhaps you could find the results of antibody tests? :)

wildpoppy profile image
wildpoppy in reply togreygoose

Good idea!! Though, I'm pretty sure I was diagnosed properly... I was wondering about going hypo after (no longer on carbi)... I just don't understand why my ash shot up so quick, its never happened like that before... Ugh!! Flipping thyroid! :-)

greygoose profile image
greygoose in reply towildpoppy

It is possible that you never had Grave's, you had Hashi's. Happens all the time.

wildpoppy profile image
wildpoppy in reply togreygoose

Oh wow, really? Thats worrying! Though I have never been hypo in 4 years... I will check my antibodies again... Thats grey goose :-)

greygoose profile image
greygoose in reply towildpoppy

Yes, really. We see it all the time on here. It is worrying, but it happens.

Shinbone profile image
Shinbone

Hello. I have been on the same rollercoaster as you. Best advice I can give is go to elainemoore website, join her forum. Post your query and Elaine will reply. She has a wealth of knowledge on graves and all thyroid issues. Fantastic resource. I don't know where I would be without healthunlocked and Elaine's advice. All the best to you.

wildpoppy profile image
wildpoppy in reply toShinbone

Thank you so much, I will get on! Good luck for you too x

Lora7again profile image
Lora7again

I have Graves' and bounce between hyper and hypo ... you need a detailed thyroid function test which includes TSH, T4,T3 and antibodies mine are 4000 at the moment and very high. You also need to test your vitamin D mine was 7 when I was really ill 10 years ago. Also test your vitamin levels B12, Iron and Ferritin. Then post them on here for members to comment on.

wildpoppy profile image
wildpoppy in reply toLora7again

Thats interesting, I have never heard of swinging between the two with Graves.

I recently had bloods

B12 420

Vit D 55 (could do with going a little higher, but within range)

Ferritin 13 (low) but I am vegetarian so have always had borderline anaemia.

Unfortunately they won't test T3 :-(

minkjaere profile image
minkjaere

I had Grave's (twice), first in 2013, was on meds for 11 months and after that, was cleared, and it came back this year. What i observed in my tests is that right after taking out the meds the TSH also increases, for example from 1.8 to 3.7. And then it gradually decreases until it falls between 1.2 and 1.8, or something like that, in a matter of a few weeks. I am not sure about your range but here in Norway, the accceptable range is 0.2 -4.3. So if that is the case, your 3 is still ok. And how do you feel right now?

wildpoppy profile image
wildpoppy in reply tominkjaere

Thank you... sorry it came back... I have relapse a few times in 4 years, its exhausting. It always comes back with severe stress.

That is interesting what you say about how your TSH changes. Mine for example has been <0.06 whilst on medication.... my T4 normalises within range and when I come off meds, my TSH takes ages to recover.... it took 1.5 years for it to creep up to 1.0!

So I couldn't understand why this time it shot up to 3.0 in a matter of 7-8 weeks.. I guess it means my thyroid is being lazy now?! Though I hoping that like you, it will normalise and lower a little over next few more weeks. I will retest in 3 weeks!

I feel ok ish, I am suffering from heart constant palpitations (one every 10 sec),and I feel tired/worn out. I thought I was hyper again, but my results wee the opposite!

The TSH range in with my consultant is 0.8-4.5. So I am in their range, but I do know (from this forum!) that TSH should be better at around 1-2.... Fingers crossed! Thank you or your help x

minkjaere profile image
minkjaere in reply towildpoppy

Hi!

Yes, ive always been like that. My body respond to medications fast. I don't know if i should be happy about it. The good thing is my values normalise fast (but not necessarily feeling my old self), but the downside is, i cant take the meds for long. Our treatment plan here in Norway should be 18 months to 2 years. But i cant manage, my body really refused the meds and i feel so bad. In the first one, i have to take meds for 11 months only and have to stop. After a year of blood tests being normal i was considered on remission. This year i had a relapse, had to take the meds for 7 months only and have to stop, and now under observation regularly.

With your case being the TSH really slow to respond previously, and having high values now, I think is different with my personal experience.

I hope you feel better soon :)

Lora7again profile image
Lora7again in reply tominkjaere

I am sorry I don't agree that 3 is ok .... most people feel well with a TSH of around 1 .... for example my son-in-laws TSH is about 1.02 and he doesn't suffer with thyroid disease. If my TSH was 3 I feel ill and unable to function properly having said that you need your T4 and T3 in the upper third of the ranges.

minkjaere profile image
minkjaere in reply toLora7again

Hi Lora,

My tsh level didn't stay at 3. It was only like that after a few weeks being off from the meds. But after 3 weeks when i took the blood test again, it was in the 1.5 range.

pennyannie profile image
pennyannie

Hello Wildpoppy

If you do have Graves Disease and are positive with the TSI/TRab antibodies you'll need to try and understand how this auto immune disease can effect you.

Graves is for life, it thrives on stress and anxiety, and something happened to trigger your immune system to attack your body, and when the thyroid is attacked the symptoms can be alarming, life threatening and sometimes, down right " odd " .

The Elaine Moore website has sections on how to manage your own health and immune system and as previously suggested an excellent adjunct to this amazing website.

wildpoppy profile image
wildpoppy in reply topennyannie

I will look at this website in a second, I have never heard of it. Thank you. Yes, all of my diagnosis and relapses have been due to a rotten marriage, which I am desperately trying to get out of (currently starting divorce talks, hence latest relapse, as my husband is being so horrible).

Thanks for your help <3

Lora7again profile image
Lora7again in reply topennyannie

Yes it can be frightening I was admitted to hospital in July with a suspected heart attack ... I was sweating and shaking all over and my heart rate was in the hundreds. I am ok now but if your thyroid suddenly dumps thyroxine in your blood stream like mine did (I have multiple nodules in my goitre) it can feel like you are dying. I rang my daughter to say good bye to her because I felt so ill. I am in remission now and feel fine but I have no idea how long this will last. I am member of Elaine's website btw.

Batty1 profile image
Batty1

I lived for years going hyper and then hypo and I never had a clue my doctor always told me your too stressed or your exercising too much...."shaking my head".

Lora7again profile image
Lora7again in reply toBatty1

Doctors have no idea about how thyroid disease can affect your whole body. I have been offered counseling and antidepressants for my Graves' disease which is the last thing you need!

mariaanaball profile image
mariaanaball

hello! What did you take aside from medicine what herbal? thanks

Lora7again profile image
Lora7again in reply tomariaanaball

Who is that question directed at? I have never taken any herbal remedies btw.

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