Does anyone know anything about how to put your hypothyroidism in remission or maybe improve thyroid health?
I've been very passionate about this for a few years now and I managed to successfully cut my medication to half. I think my thyroid is still improving as well. I've had hypothyroidism for about 15 years and it could be that the gland is a bit damaged. In this case, I could not reverse it. But I'm still hopeful.
I've been diagnosed with Chronic fatigue only recently, which complicates things but the thruth is that I have had it since I got hypothyroidism and since I had a car accident and a neck trauma. It seems it's normal to get the two and fibromyalgia, which of course I also have. But, in my case, I'm convinced the problem is the thyroid and if I could reverse hypothyroidism, the others would either vanish or, at least, get significantly better.
Is anyone on a similar journey or has been or has any thoughts on this?
Thank you
Miriam
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Isilune77
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Almost zero chance that you could ever reverse your hypo because thyroids cannot regenerate. If your problems started with whip-lash then the thyroid will be damaged. Have you never had an ultra-sound? (As an aside, did you know that dogs that pull on the lead can damage their thyroids and become hypo? Much the same thing as whip-lash.)
As for remission, that can happen if you have Hashi's/Ord's. But it's only temporary. Have you had your antibodies tested?
Chronic Fatigue and Fibro are syndroms. Syndroms are a bunch of symptoms - not a disease. Symptoms have to be caused by something, so as you are hypo, it's not surprising you have both. But, they're just labels being stuck onto your hypo symptoms.
Hi Isilune77 and welcome to the forum/your first posts (though I see you've been a member since 2021),
To answer your question, as far as I know you cannot put "hypothyroidism in remission", particularly as you say you have had it "for about 15 years", which would indicate that it is an autoimmune version of hypothyroidism - aka Hashimoto's - that gradually destroys the gland. In a nutshell: Hashimoto's Thyroiditis, just like Graves' Disease (the Hyper version of the autoimmune disease) is a lifelong disease.
Additionally, as other members will tell you who have experimented with reducing or coming off their *medication*, they found it was a bad move and had an entirely deleterious effect (almost back to square one) as, once you are on *thyroid replacement therapy*, the thyroid function as it was stops working and relies on that/those replacement hormone(s) to do the job. You cannot possibly know what stage of damage your thyroid is in unless you have a scan of the thyroid. (*hormone replacement is different from any other form of medication, in that our bodies need it to function properly*)
Indeed, I'd be very surprised if your recent diagnosis of chronic fatigue, as well as also having fibromyalgia (was that diagnosed more recently too?), particularly if that came after the diagnosis of hypothyroidism, wasn't connected to your reducing and playing around with your dosage. Many people on here, myself included, also have a diagnosis (or label) of Fibromyalgia and CFS, many from before they were correctly diagnosed with AITD as a dustbin diagnosis. In fact, recent research indicates that fibromyalgia/CFS is most likely an autoimmune disorder (see following articles) and quite possibly linked to other autoimmune conditions, particularly Hashi's, or one-and-the-same. They certainly have many, many symptoms that overlap.
I am afraid the people on this site, or the major of commentators are pro thyroid hormone replacement generally for the rest of your life. But, I would love to know how you get on. Good luck!
Remember that the thyroid regulates almost all our body systems so, if it's not working properly, you do need your thyroid hormone to be replaced. Otherwise the effects will be noticeable, and sometimes dangerous.
And I am aware of this, and I am also open to other ideas including someone not needing thyroid replacement hormone as Isilune77 wishes to try. Certainly because many people do not find the various treatments actually help even when on ‘optimised’ dose etc.
As I said, the majority of the commentators on the forum are pro hormone treatment for the rest of one’s life. Any deviation from this is not well received.
Likely to see that results show that you are under medicated and in need of dose increase or addition of T3 and/or low vitamin levels
Hence diagnosis of chronic fatigue and fibromyalgia
Both often inadequately treated hypothyroidism
Assuming you have autoimmune thyroid disease, are you on strictly gluten free and/or dairy free diet
Bloods should be retested 6-8 weeks after each dose increase or brand change in levothyroxine
Or after 8-12 weeks following dose reduction in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Testing options and includes money off codes for private testing
I'm not new. I used to be Smily a long time ago. I used to spend a lot of time here and very valuable.
I'm aware of these things you mention. Although I've never taken my antibodies. Does the NHS do this? I very much doubt it.
I was diagnosed with Fibro at the same time I was diagnosed with Hashimotos, after I had a card accident. I always had Chronic fatigue but I've been always so overwhelmed with Thyroid problems I never wanted to be diagnosed. As you all say, I'm sure the fibro and the ME are connected - in my case - with the thyroid but I might be wrong.
I went off gluten and diary about three years ago and began taken supplements to improve thyroid health and my constipation (A serious problem because my body could never absorb the hormones/medication), and I went from 8 NDT, to 4. Please don't be alarmed. My IBS was so bad that as I said, I wasn't assimilating the medication at all. Otherwise, it would have been too much, I'm sure you all agree.
Today, I asked to have a blood test to check my thyroid because there's a chance that my dose is a bit too high. This could be because my thyroid health is improving (Whatever this mean), or due to dietary changes. I'm going from pescatarian to almost vegan - almost. It could be that my digestion is better. I'll have to wait and see.
It might not be able to reverse it, but I am improving my situation somehow, so let's see where all this leads.
It's a tricky journey, yes the NHS will check TPO but they should also check your folate, ferritin, Vit D and B12... and full bloods if you haven't had them for a while... if you are giving up fish you'll need to have a good B12 in your supplements along with all the other things that we are so bad at absorbing
Not sure why you've made another profile (maybe you couldn't access the Smily one because its been ages since you were on?) but, I think it might help to keep everyone up to speed if you can find a way to 'merge' the two to your new one (copy the stuff over?), particularly if you can't access the Smily one anymore so that you don't lose the original stuff from the earlier part of your thyroid journey.
Although I've never taken my antibodies. Does the NHS do this? I very much doubt it.
Doubtful they'll test for them now after this long if they haven't before but, you can always ask/try! Also, as you probably know, though there are rare exceptions, NHS testing of TFT is woefully inadequate and never test for the most important FreeT3 (fT3) and usually only test the TSH (a pituitary hormone that tells them diddly squat about thyroid status once on thyroid replacement) and sometimes T4 or (if you're lucky!! 🙄) FreeT4 (fT4)
Today, I asked to have a blood test to check my thyroid because there's a chance that my dose is a bit too high. This could be because my thyroid health is improving (Whatever this mean), or due to dietary changes. I'm going from pescatarian to almost vegan - almost. It could be that my digestion is better. I'll have to wait and see.
Not sure whether you've asked for your GP/NHS thyroid blood tests to be checked and, if so, what they'll agree to or actually do(?) but, I do hope you'll take on board the guidance offered by SlowDragon and go for the private testing, including not only a full thyroid panel and the antibodies but, the all important vitamin and mineral testing for thyroid health, particularly if the NHS miss the important ones off.
Like HealthStarDust , I would love to know how you get on and really look forward to you updating us. Good Luck from me, too! 🤞🍀☺️
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