I was diagnosed hypotiroid after a trip to ER on Aug 2017. ( suspected Angina).
💖30 Aug 2017 :Tsh : 20,98 (high). T4: 72.17 (normal)
💖5 Oct 2017 (started 1/2 100mg a week and 2 weeks 100mg) --> Hyper
Tsh : 0.28 <0.35 (slightly below normal)
T4: 159(slightly above normal)
T3:1.1 (normal)
💖I've been asked to stop levo for 2 weeks and become Hypo again: 27 October 2017
Tsh : 27.5. T3: 0.82 (high). T4: 4.1 (low)
💖18 November 2017 (Start 1/2 100 mg for a week and 2 weeks 100mg):
Tsh: 1.234 ( normal). T4: 8.83 (normal). T3: 0.95 (normal). Although normal I'm having symptom of sinusitis but apparently my sinus is totally fine (thank God).
💖my 3rd doctor asked me to fast (not using levo) from 28 Nov until 15 Dec 2017:
Changed to my 4th endocrin, she put me back on 100mg and add vit D 1000iu. I also had my neck scanned (finally) and she confirmed I had hashi and a tiny enlargement. I also went to a functional doctor and he prescribed me with zinc and B12 methyl, in the mean time tried eliminate gluten, soy and dairy for about a more than a month. Routine walking in the morning. Unfortunately NDT isn't avail in my country yet.
Questions:
1. I noticed that I always get hashi flare around 3 weeks after starting a new dose. Is it normal? Or am I being overmedicated? Anxiety and difficulty to breath are the symptoms.
2. My new Dr wanted to see me every 3 months..since she said I had been in normal range with 100mg dose. But with the Hashi flare :
a. Should I just do lab test and asked to meet her in 4-6 weeks time instead of 3 months? What is the normal period time to have your lab checked?
b. What do you do with the flare? Do you keep taking the same dose until your next appointment or is it ok to reduce the dose to 75mg (on my own) until the flare is gone? And how long is the flare normally goes away?
c. How do you cope with the anxiety? Any remedies? It's a new thing for me and it scares me a lot :(. I have 3 children to take care at home.
3. Is there anybody here that has been successfully lower the antibodies? And if yes, can you share your stories?
4. Do I still need to check on my TG antibodies? Would it make any differences?
Anything but the hashi flare, I've been doing good with minor hypo symptoms. Thank you so much and sorry for the long post.
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Littlebox
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Welcome to our forum and I am sorry you have an Autoimmune Thyroid Disease (this is diagnosed if thyroid antibodies are present). The common name is Hashimoto's and is the commonest form of hypothyroidism.
I have no idea why doctors prescribe levothyroxine then tell you to stop/start taking your dose and I think they've no idea what they are doing at all as they are just playing with numbers and not considering the patient, it seems to me.
Once we are diagnosed as hypothyroid or Hashimoto's the treatment is the same, i.e. levothyroxine. The aim is a TSH of 1 or below with a Free T4 and Free T3 towards the upper part of the range. These two are rarely tested for some unknown reason to me.
When first diagnosed and given, usually, 50mcg of levo we have a blood test every six weeks with an increase of 25mcg levothyroxine each time until we feel well with no clinical symptoms and a TSH of 1 or lower.
When you state your results you also have to include the ranges. Ranges are important to enable members to respond. The reason being labs differ and it makes it easier to respond.
Antibodies attack the thyroid gland and they wax and wane, so sometimes you feel hypothyroid and at other times hyper (but not hyperthyroidsim). Antibodies can be reduced by going gluten[-free.
Levothyrxoxine is taken, usually first thing when we get up, with one full glass of water and don't eat for about an hour as food interferes with the uptake of hormones.
Blood tests should always be at the earliest possible, fasting (you can drink water) and allow a gap of 24 hours between last dose of levo and the test and take afterwards.
You should also have B12, Vit D, iron, ferritin and folate tested. If your B12 was very low an intrinsic factor test should have been tested to exclude pernicious anaemia.
B12, Vit D, iron, ferritin and folate all have to be optimal so that thyroid hormones can work effectively.
These are a list of clinical symptoms and eventually as our dose is increased they should reduce and resolve as your dose of levo is increased.
The aim is to relieve all of our clinical symptoms get the TSH to 1 or lower with a Free T4 and Free T3 in the upper part of the range. The latter two are rarely tested.
When we begin taking levothyroxine we have to have a blood test and increase every six weeks. After an increase and we feel symptoms returning this indicates that an increase in your dose may be due so a blood test is required.
Your B12, Vit D, iron, ferritin and folate must also be optimum.
I'm afraid just saying (normal) does not help people to advise you. We need to know the ranges for all your blood tests. 'Normal', just means 'in-range', but it's where the result falls in the range that counts.
It doesn't sound as if your doctors know very much about thyroid! They should not be stopping and starting your levo like that. It will just make you worse. You should have been started on 50 mcg, and retested after six weeks, and your dose increased by 25 mcg. Start low and increase slowly is always the rule with hormones.
I'll try to answer your questions...
1. What exactly do you mean by a Hashi's flare? Do you just mean that you start having symptoms that you associate with hyperthyroidism? One has to be very careful with symptoms, because so many of them can be both hypo and hyper.
A Hashi's flare comes just after an immune attack on the thyroid, when the dying cells leak all their store of hormone into the blood, and hormone levels rise temporarily. People don't always have hyper symptoms during this time, but if you do, just reduce your dose until you feel hypo again.
2. a) labs should be done six weeks + after a change in dose. Three months is rather a long time to wait.
b) it depends how you feel with the 'flare'. You can reduce your dose yourself, as I said above. The danger of going to see your endo during a flare is that she's likely to panic when she sees the over-range results, and slash your dose. Very few doctors understand how Hashi's works. It's impossible to say how long a flare will last - or rather the excess hormone in the blood - it will take the time it takes for the excess hormone to be used up or excreted.
c) anxiety is an under-medicated symptom as well as an over-medicated symptom. You need to know your results and make sure you are optimally medicated. But, sometimes just knowing that it is just a symptom, and not a disease, helps people cope with it.
3. Difficult to know if antibodies have been successfully reduced, because they fluctuate all the time, and are highest just after an immune attack. But, many people find that a 100% gluten-free diet and taking selenium helps. The most useful thing you can do is take enough thyroid hormone replacement to suppress your TSH - the less the gland is stimulated, the less the immune system is stimulated to attack. However, doctors are terrified of suppressed TSHs, and tend to want to reduce your dose. Utterly stupid, of course!
4. Once you know you are Hashi's, there's no need to test any antibodies again. Hashi's doesn't go away, and testing Tg antibodies won't change your treatment in any way.
My most important advice to you is not to let your endo mess around with your dose any more. She obviously has little idea what she's doing, and is likely to aggravate your condition. She is there to advice you, not to dictate to you, so you do not have to agree to everything she tells you to do. Learn about your disease and be your own advocate.
Thank you so much for the detailed reply. Very informative
For the range normal:
Tsh: 1.234 ( normal)/ 0.350-4.940
T4: 8.83 (normal)/ 4.87-11.72
T3: 0.95 (normal) /0.58-1.59
For my last test:
Tsh : 8.486 (high) / 0.5-4.780
Ft4: 1.1 (normal)/0.89-1.76
Anti TPo : 600 < 5.61
- Yes, what I mean by flare is sign of hyper.. Which I know is different than my hypo symptoms. When I am hypo I get super lethargic.
- in my experience before, when the flare happened I reduced it to 50mg until the symptoms is better and back again to my first dose. Do you think it's too much? Or is it safe to be on 75mg? And back to 100mg. It works for me with 50mg..
- I know, it's a big challenge to find a doctor who understand about thyroid :/ hence I already change to 4 doctors :/ but she is the best among all hehe.. Because she actually listened to me and I feel appreciated. She also put me on Vit D, the previous doctors didn't prescribe anything than levo.
I do love my functional doctor.. He is the one to said that I need to do gluten free ( because of my leaky gut and I have some paracites) + test my b12 and zinc which are low. But he can't prescribe the levo dose.. So I'm still figuring out how to deal with this. Hope I'm on the right path.
Yes, best to ask, because if your B12 and vit D are low, the others are likely to be, as well. What exactly are you taking for the B12 and zinc? How much of each? Do you take a B complex with your B12?
Why on earth were you asked to stop the levo for 3 weeks??? What a stupid thing to do!
B12 methyl 1000mg and zinc picolinate with B6 , one dose a day each and also Vit D3 1000 iu. I don't take Vit B complex.
I know .... I already challenged him as well.. When I reach 2 weeks of fasting, I got so sick that I voluntarily do a lab check and confirmed that I'm back to hypo.. I already fired him 😬
I don't think the methylcobalamin + zinc with B6 is the right way to go. You do need to take a B complex because the Bs all work together, and need to be kept balanced. But, a B complex with contain B6, and you don't want to take too much of that. It's the only B that isn't water-soluble, and too much is not good. If it were me, I'd get a good B complex with methylfolate, and change the zinc to one with no B6.
Do you know if there are known effects if you are using a high dose of Levo for a long period of time?
I thought that your immune level can come back to normal level - remission ? (I've read Isabella Wentz experience- she has been 2 years on remission means her antibodies are back to normal with steady dose of levo)
Yes sure.. She has a lot of protocols to get back on track and better.. I'm just curious to know if there's somebody /people here that could be on a remission after knowing the root cause of the thyroiditis autoimmune? (My functional doctor said that I have some parasites, leaky gut (gluten , soy and dairy free), toxins ( liver doesn't function well) and untreated virus that cause the autoimmune attack- ).. I'm currently working to treat the root causes... 😊🙏🏼🙏🏼
Littlebox Your functional dr sounds very good. Mine (a functional nutritionist) found that I had parasites, leaky gut, candida and sibo through testing. I had to work through months of different protocols to eliminate them and the parasite kept returning but when I finally got rid of everything I felt amazing. My B12, folate, ferritin and D3 results improved dramatically as I was finally absorbing them too. Keep going and you will get there!
Yes I feel so lucky to know him.. He is far better than my endocrin dr. 😆 That's awesome.. So has your hypo symptoms now gone? Do you still get hashi flare? Kipsy
My symptoms are much reduced- almost non existent now although I dread them returning! I'm GF and grain free, take all the usual supplements and my antibodies fell from over 1000 to 700 but haven't moved any further. I'm on T4 and have almost got the dose right. I became slightly overmedicated and am waiting for that to resolve.
I found out from private lab results and from posting them on here. As soon as I was told I was overmedicated it made total sense why I was feeling so anxious, wired, unable to sleep, boiling hot, sweating masses, and horribly argumentative to my poor husband!
What do you call a high dose of levo? 100 mcg isn't a high dose. Some people take up to 400 mcg. I don't know of any effects of taking it for a long time, but the alternative is death. So, you don't have much choice, do you.
It is possible that you can go into remission of Hashi's - although how an earth you find the root cause, I have no idea - people might think they know, but where's the proof? But, it's got nothing to do with taking levo. Levo doesn't treat anything. It's thyroid hormone replacement (T4) and just replaces the hormone that your thyroid can no-longer make to keep you alive - you cannot live without thyroid hormone.
And, even if you do bring your antibody levels down to normal on a permanent basis, you cannot repair the damage already done to your thyroid. And, to have a TSH of over 8, there has already been considerable damage done to your gland.
I see.. Thank you so much for the insightful info.. Learn a lot of new things. Yes, my new doctor has scanned my neck and she said the damage is already there. 😔.. But as for now, the gluten soy dairy with supplements works well for me.. I got less / minor symptoms, I have more energy.. But then the flare happen again 😶 It's quite frustrating..
The flares will continue to happen until you suppress your TSH. As I said, as long as the TSH continues to try and stimulate the thyroid, it will also stimulate the immune system to attack. The flares happen just after an attack, so you need to stop the attacks.
Littlebox - you asked if my flares had stopped. I believe so as my TSH went down to 0.89 Rather stupidly perhaps, I then increased my levo slightly to see what a lower TSH would feel like. It went down to 0.013 and I felt horribly overmedicated. However, apart from that, I haven't had anything that feels like a flare for a few months. Grey goose is absolutely right.
I persuaded my GP to allow me to try lowering the TSH from 0.89. I wouldn’t adjust my dose without taking advice on the forum. When I became overmedicated (which I knew due to private Medichecks blood test for TSH, T4 and T3) I posted the results on here and was advised to reduce the dose and retest after 6-8 weeks. I’m currently in week 4/5 of that period and will do a private retest in a couple of weeks. I suspect I’m now slightly under medicated as a few symptoms are reappearing but they are minor ones so far.
I see .. My doctors here only test tsh and t4.. I would ask again for T3.. But in the beginning of my diagnosis, my T3 is in normal range although not in the optimal one.
I have been referred to a cardiologist before and he is the one who actually found that I have problem with thyroid.. I will always be grateful for his fast and precise diagnosis 😁 .. Thankfully I don't have heart problem.. Another thing to be grateful for
Yes there is a close link between the thyroid and the heart function. My heart would flutter telling me to dose T3 in the early days when I was split dosing 😊
so are you in NTD now? I wish we could have it soon in my country because my dr (endocrine) said that they only have t4 meds.. Not even t3 :/.. There's an option to import it but it's very costly 😅
Taking levo and T3 is pretty much the same thing as NDT. I know it's called 'natural' but it isn't as natural as all that. The hormone comes from pigs, but it still has to be processed and fillers added. You can't have a tablet without fillers. And, although people say it contains 'all the thyroid hormones', there's no proof that it contains T2, T1 and calcitonin, otherwise, the quantities would be written on the box! Besides, it doesn't suit everyone. So, if it's expensive, I wouldn't really bother, if I were you.
I have some test done by my functional doctor.. And he found some triggers that cause inflammation in my body. I have a lot of toxins ( high lead toxin for example), leaky gut , lack of some vitamins especially vit D, zinc and b12, also some parasites. Unfortunetaly he doesn't have the license to prescribe the levo dose. 😁 Still working on those triggers.
Just because they trigger inflammation, doesn't mean they are the root cause of your Hashi's. Talking about two different things, here. Leaky gut could be the cause of your Hashi's, but I doubt the toxins were, and the nutritional deficiencies definitely weren't. You have nutritional deficiencies because you have leaky gut. You probably also have low stomach acid, due to low T3 and low B12, so that will also cause deficiencies.
The leaky gut does need healing, of course, and the deficiencies optimised, but there's no guarantee that that will reverse your Hashi's.
Not trying to be a wet blanket, here, just realistic.
It's okay.. I also know that it's not an easy journey. But at least I have tried my best to heal ..😊 No regrets hehe.. Who knows I can reverse it someday 😊 Just trying to be unicorn and rainbow today hehe ✌🏻️😜
Your welcome. But, I don't believe in giving people false hopes. I may be a pessimist, but I find that if we expect nothing, we're never disappointed! lol
Hi greygoose . i forgot to mentioned that the flare always happened near my monthly period.. Do you think it's because PMS related? Anyway I had reduced my dose by 25mcg this morning... Thank you!
Hi Marz .. I'm from Indonesia.. Can I ask you a question again : the hashi flare always happened near my monthly period.. Do you think it's because PMS related? Or being overmedicated? I'm still confuse 😶..Thank you!
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