I have Hashi with reactive lymph nodes. Ive been on the Gluten/dairy/soy free diet for 6month and sugar free 2 month...i mean no bananas, carrots or mangos.
Since my antibodies are still going up, not down i though ok its a waste of time. So i had few cookies and crackers and 1 spoon of honey in my tea...and now my thyroid is throbbing, pulsating, lymph nodes up and hurting, GI very upset, pains in tummy and phlegmy throat. Dr said i hav reactive hyperglycaemia but this sugar free diet was suppose to fix it along with enzymes and gluco complex. Im so depressed now, how can 2 days set me back so much?? why am i not healed? Will I be on this bland diet forever?
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KKristine
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I also have issues with sugar and at one time couldnt have any at all. No I can have it in small amounts only. The other day I definitely over indulged and ended up floored the next day.
How well replaced are you? Is your current treatment optimal?
Are your vitamins optimal?
Do you have a copy of your latest blood results that you can share with us? You are legally entitled to a printed copy of your results, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception.
When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...
There is also a new company offering walk in & mail order blood tests in Crawley, Hove and Reigate areas. No charge for blood draw in clinic. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private postal testing early Monday or Tuesday morning.
So before I started gluten dairy free diet my Peroxidase was 45.
I was too high of Vit D-GP said toxic high, so ive stopped that. Vit B was good.
I worked with a nutritionist, but since there was no improvement, but many mistakes, Ive stopped that. Ive seen Natural endo, he is very experienced, but sadly did not explain a thing or worked with me, just prescribed things without letting me know what, how long, and why. Besides that i reacted terribly to them: Metavive1 and Adrenavive1, DR did not offer alternatives, so im very stuck. I dont even know the reasson why i have autoimmune d, but if i dont know why, then how can it be healed??
In terms of diet: very healthy organic, anti inflamm diet: High in protein, fiber, healthy fats=seeds, nuts, avocado. many anti inflamm supplements for leaky gut and vitamins.
Selenium, iodine, vit C, B. magnesium, Pribiotics, omegas 3,6,9.
Life is miserable: no occasional wine or icecream...or not even spoon of honey in the tea. Anyway, im trying to save my thyroid but its not getting better. xx
I dont even know the reasson why i have autoimmune d, but if i dont know why, then how can it be healed??
It can't. There is no treatment for autoimmune thyroiditis. And, I doubt anyone knows why they have it. I don't. And, I can't see how you would find out.
And, even if you did manage to find out, your thyroid would be so damaged by that time that you'd still need thyroid hormone replacement for life. Thyroids don't regenerate.
However, once your thyroid is completely destroyed things will calm down. The attacks on the thyroid will stop, so the antibodies will drop - not that they're doing anything much. And, you'll be able to find the correct dose of levo etc. for you.
But, you really shouldn't be taking iodine. That's the worst thing you can take for Hashi's - and I speak from experience. What's more, you just don't need it, your hypothyroidism isn't caused by iodine deficiency, so why over-load your system with a potentially dangerous mineral?
Thats so depressing....thats why im trying to do everything possible so i do not lose my thyroid...even if i have to take additional thyroid hormones. Ive seen nutritionist and natural endocrinologist who says that my thyroid can be saved. Another endo specialist said that not always TH dies after having Hashi all life...? That was new to me, but it all is...
I understand that if auto immune is healed, then the attacks on thyroid will stop, and that 90% of the time the reason for autoimmune is leaky gut, SIBO, etc...Ive tested positive for leaky gut and followed very strict diet for last 6 month.
Its also been shown that if we dont fix our autoimmune d they will attack another system, so i dont want to end up with dead thyroid gland and MS or Arthritis or Diabetes....studies show that if a person has 1 autoimmune, its more likeley they will have another. Ive aslo read about many people healing their autoimmune d, thus stopping Hashi...I really am trying and fighting for my thyroid but i dont know what else to do...........
I'm sorry it's depressing, but it's something we all have to face up to at some point. I don't want to give false hope.
Doctors know so little about thyroid that they probably do believe that the thyroid can be saved. I don't - I'm not a doctor! But, if you live long enough, the thyroid will be killed off. It just sometimes takes a long time.
I understand that if auto immune is healed, then the attacks on thyroid will stop
Absolutely, yes. But, by that time, the thyroid will be so damaged that it might as well be dead. Given the time it takes for you to notice symptoms - can be years - and consult a doctor, get a diagnosis, get thyroid hormone replacement, the thyroid will be irreversibly damaged. Thyroids do not regenerate.
Its also been shown that if we dont fix our autoimmune d they will attack another system
Well, I don't know where you saw that, but antibodies are very specific. Different type of antibody for every kind of autoimmune disease. So, TPO and Tg antibodies are not going to start attacking your joints, or your liver, or anything else. In any case, TPO and Tg antibodies don't attack anything. They just clean up the blood after an immune system attack.
However, it is true that if you're the type of person that is prone to autoimmune diseases, you are likely to have more than one. But, that doesn't mean that just because you have one, you're automatically going to get another. Some people just have Hashi's and nothing else.
Ive aslo read about many people healing their autoimmune d, thus stopping Hashi..
Yes, we've all read those stories. I've read many of them on forums, people claiming to have cured their Hashi's by whatever means. I've also seen them come back some time later, having had to restart thyroid hormone replacement because their Hashi's wasn't cured at all, it was just in a sort of remission. That often happens when one is coming down from a Hashi's 'hyper' swing, on the way to being hypo again. You can be euthyroid for quite a long time. But, in the end, you do go back to being hypo because the thyroid is damaged and can no-longer make enough hormone to keep you well.
i dont know what else to do...........
Well, I would say, the best you can do is concentrate on finding the right type of thyroid hormone replacement for you, and the right dose, and optimising your nutrients so that you are as well as you possibly can be. And, once again, I'm sorry you find this depressing, but personally, I think it's best to know exactly where we stand and not spend our lives chasing the unachievable.
Thank you very much...Well...i guess its time accept this dreadful condition....waiting to see NHS endo. Just saw one privately last week, he said no need for meds at the moment...so confusing, he said th is still functioning...?
OK, to a certain extent it is still functioning - if it weren't, you'd be dead! But, if you have symptoms it isn't functioning well enough and you need thyroid hormone replacement to stay well. But, I suppose he's only looking at the TSH which isn't very high yet. I can imagine that does confuse you, but the truth of the matter is that he has very little understanding of thyroid, so nothing he says is going to make much sense.
Do you have the ranges for each test? This is important as they vary from lab to lab.
Your ferritin although not terrible could be improved by eating chicken livers or pate a few times a week.
If your vit D got too high then pausing the supplement is a good idea but you do need to restart it as otherwise you will end up deficient again.
If you can find the results for B12 & folate that would be very useful.
When was the thyroid test done? At what time of day and date (month/year will do)?
It would be useful to see a full thyroid panel to include TSH, FT4 & FT3, also both sets of antibodies, TPO & Tg (Thyroglobuin) that the NHS doesn't test.
Hopefully the effects of the carbs you ate will only last a few days. I've previously been on very strict diets myself through necessity and now eating relatively normally other than gluten, dairy, soy & lowish carbs/sugars.
Thyroid test was done 2 weeks ago about 11am, the crappy NHS did not test for anything else besides T4 and antibodies....and this was meant to be thyroid panel blood test-useless...Ill retest in 1 month time in Europe.
Im taking Viridin B complex. And starting Biocare liquid iron drops.
Its day 4 after i ate gluten and sugar, the symptoms are still here-thyroid is pulsating and groin l.nodes sensitive, but not hurting as much. I can not believe that a bit of sugar and gluten set this off.....how can that be??
I tried Metavive 1 and Adrenavive 1 but had horrific night jerks; like being hit with an electricity, panic and anxiety, exausted....just couldnt take them. I even started on the half of capsules. Folate and B is within range but i cant find the exat nr. But this is sugar and gluten that just totally set me back now...why?? Ive been healing my leaky gut for 6 month and still its not healed?? I should be able to have a biscuit...
The latest thyroid test is about 2 weeks old (about 11am) , ive been on gluten dairy free for 6 month taking tons of supplements and i expected things to be better, but they are getting worse....which clearly show im doing something wrong.
My natural DR prescribed me Metavive1 and Adrenavive1 but it caused me terrible jerks out of the sleep every time i fall asleep all night long, like being hit with electricity, heavy anxiety and palpitations, also dead tired-wasnt able to get out of bed and had to take 10 days off work only because of the side effects.
I would prefer to take natural thyroid hormone rather than synthetic.
Click on "Read the list of available tests" and on page 3 of the pdf you'll see
Urine Iodine Test:
Specimen requirements: Urine
Cost: £76
Order Code: END25
There’s no such thing as “natural” thyroid hormone
They are all manufactured and contain fillers
The actual Ft4 is identical in Levothyroxine or NDT
NDT really doesn’t suit everyone, especially with Hashimoto’s
Generally far gentler to start on levothyroxine …..50mcg initially and slowly increase dose up in 25mcg steps (retesting 6-8 weeks after each increase) until results are high enough to bring Ft4 towards top of range, Ft3 at least over 50-60% through range and usually TSH below 1……and all four vitamins optimal
Adrenals should slowly recover once thyroid levels are optimal
Vit D I was taking 4000 ui and from multivitamins-low dose, but not sure, as they run out. I was always very low on D, so nutritionist told me to up the dose, then i went toxically high.
So you think, i still need Levothyroxine with my levels?
You need to have at least 6 -8 weeks without taking any thyroid hormones (and probably iodine too) before TSH / fT4 / fT3 tests can give a true picture of your thyroid hormone levels.
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Increasing number of members find it smoother/more tolerable to split levothyroxine as two smaller doses, half dose waking, half dose at bedtime.
So if normally splitting your levothyroxine, take whole daily dose 24 hours before test
My goodness, thank you for all the information, im going to print this out and save it...of course none of the doctors would ever share such info...Wow, you must have been on a very long and lonely road with this to have such a knowledge.... and here im thinking i had enough of this and cant carry on after only 1 year with really bad symptoms and no help anywhere-seen so many private DR, spent all my wages on them and supplements....
"Ive done Iodine patch test on the skin, which disappeared in 5h. The Dr told me to take 4 drops on 15% Iodine throughout the day. I did, im new to all this ( have Hashi). I had terrible side effects, horrible panic attacks, palpitations, body jerking at night like being hit with electricity, muscle tension and many more...When I reported this, he just said add the salt. I dont feel my Thyroid getting worse, just me totally dead tired.
I must admit the Dr doesnt seem to care to explain anything or to offer alternatives, which is sad. Any more feedback about this Dr would be much appreciated, as im not sure if I should carry on with him-theres few red flags, but i dont know where else to go, as i want to try the natural way."
Are you stil taking this amount of iodine ? if so , it may be related to how your thyroid feels now ...... can you give us a time line .... (dates/ dose of any supplements , when you started / stopped Metavive/ dose / dates of tests. and if you were taking metavive at the time / time of last dose in relation to tests) ,... so we can get a better picture of what you've taken when ....it would help us get a better idea of what might be going on.
Ive stopped taking Iodine-it made me feel terrible, palpitations, drunk feeling, red eyes..
But I was taking it together with Metavive1 and Adrenavive1 (half of the capsules each-i have empty capsule shells so divided knowing how hypersensitive im), then few days tried without Iodine.
Ive stopped Metavive after about 1 week (on nad off because of the sleepless nights), the test was done about 4 days after ive stopped Metavive.
It took me 2 weeks to stop jerking out of the sleep after stoping Metavive and Adrenavive.
Supplements:
AM: Invivo Pribiotics on empty. Omega 3.
After breakfast: B complex by Viridin, Iron.
Bio care Microbiom by Invivo for gut health
1000mg vit C
Selenium 2 drops by Biocare
Gluco complex at 4pm for reactive hyperglycaemia and Polyzyme during dinner Both Biocare. (enzyme causing bad constipation which already wasnt great)
Was also prescribed Betaine HCL pepsin but causes of the terrible side effects-stopped (anxiety, palpitations, panic at night time, unable to sleep despite being exausted)
Magnesium Citrate for constipation and
Glycinate 120mg before bed +golden flaxseed oil and Serentiy bio identical progesterone cream.
Menopause tincture by The Organic pharmacy (peri).
Im unable to tolerate: NAC, ALA, L-Glutamine and Betain HCL....dont know why, they all more or less cause heavy panics, anxiety espec at night. L-Glutamine made me feel like i was on speed...sharp edged pictures very fast jumping in my eyes, while trying to sleep. jerking out of the sleep like being hit with electricity. palpitations, very heavy heart, confused, out of breath, dead tired, dizzy, shaky-then i have to take Benzos in very small dose as an emergency...which i hate doing.
im wondering if i have myelation problems, had brain MRI its fine, no MS etc...
So those TSH / fT4 / fT3 results are not going to be correct because you had very recently been taking metavive and iodine, and then stopped a few days before testing .
You need to have at least 6 -8 weeks without taking any thyroid hormones (and probably iodine too) before TSH / fT4 / fT3 tests can give a true picture of your thyroid hormone levels.
Have you had any previous tests that showed hypothyroidism ? (high TSH / low fT4 ?)
p.s . it wouldn't surprise me if taking the iodine (and /or the metavive) is part of the reason for the TPOab being higher this time . healthunlocked.com/thyroidu... ) iodine-a-collection-of-useful-information
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