Feeling pretty grotty after latest results. Originally, after a period of rest and trying to focus on diet and some supplements, I had great improvement (no levo etc) and T4 and T3 went back into range, TSH was a little over, but much better.
A year later and I have a horrid shock
Free T3 4.1 (range 3.1-6.8)
T4 5 (range 10.0-22.0)
TSH >100 mu/L (0.3-5.5)
I had so hoped that the previous results showed well on the way to a miraculous recovery approx T3 = 5 T4=13 and TSH=8 (ish) antibodies were about 200 TPOab I think...... (first diagnosed at TSH 77, T4 8 ) so you can see how I gained that hope.
Ordered onto Levo..... and wishful thinking this wasn't the case. I would like to continue seeking natural solution via diet/supplement, but I think TSH is dangerously high and maybe the last lucky results where T4 went back in range, I know TSH wasn't... was a fluke, I have read auto immune thyroid (not sure if mine is hashis) goes up and down.
i know a few of you are sticking to natural method, but I have lost confidence tonight, as it is scary to think I could collapse etc.
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Hi First, I am sorry there is no natural remedies for thyroid disease. The are things that can help.N DT , armour, Erfa etc are the most natural but sill a manufactured drug. It takes quite a while to have the meds right. It will be OK, if GP not good enough do not hesitate to ask for a referral to a good endo, of your choice ( not the GP`s). Endo doe all the tests you need. However, at this stage, the important thing is, your FT3 looks OK but I always need mine much higher. First you obviously need a lot more Levo( T4). This should be increased gradually on bloods any way.If then the T4 ( levo) goes to high in range, should be about a third up. Make sure you have a little less and some T3 too, depending if still under range. I like most people need T3 very high in range. You need 4 essential tests, ,mostly hormonal and autoimmune, Vit D ( if low corrected calcium before treatment,must always be in range), iron/ferritin glucose and if pos Hb1 Ac, the better test for diabetes, similar symptoms to thyroid to start with and B12 + Foliates, this needs to be high in range.
Most thyroid disease, not all is autoimmune, which means that you are likely to gradually have others, many different ones. Hashimotos, the most common, Hypo, autoimmune, Graves, autoimmune,,far less common , yes results do swing. with it. However, personally I would think you are just in the throws of sorting your disease out. Get the results correct, you should feel better, if not then look further a field ie Graves.
You will get right but it dos take a long time and set backs on the way.
Best wishes,
Jackie
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Hi Jackie, Many thanks for that. It's a very thorough explanation and yes it has been a battle with doctors so far, they are only interested in the basic TSH/T4/T3 however I have had B12 checked and that is ok, folates think ok. They wouldn't do vit d, something about a 10 minute time slot for lab. I did ask for everything ruling out, lol...gave a long list that I acquired from various info on internet. I am not good at having tests, all fainty woozy yuck!
The thing that got me was I hesitated 6 months or so after first diagnosed and the scores looked good, all by themselves, so I thought it was just stress, poor diet and I'd try to fix it...give it a year I thought...especially after T4 and T3 going back in range.....ohhhhh now I find it way out, I am a bit shaky at the >100 TSH, it does seem the variations are massive in my case. TSH 77 down to 8 back to >100. Obviously the 8 looked hopeful...I know it wasn't 0.3 etc, but it may have gone back in totally, I didn't have that many tests. I wonder if my diet slipped the last number of months.
I am waiting for auto immune antibodies results this time, but they were 200 last time, so know they exist. I haven't been given a name for type of hypo...hmmmm!
I think you are right, with the trying to sort it out, it hasn't really been sorted. Ha ha, the day before these results I was reading about O.A.T. Axis and wishful thinking it could all be sorted...fix the adrenal....hormone.....thyroid fixes itself after, even if antibodies were present, sounded ace
Hi Several things spring to mind. Vit D, you can get a cheap blog standard test, same as NHS, City Hospital for £25, you just phone, pay and results to you. However if low then you must have a corrected calcium before treatment.Or Foxglove, about 10 days posted a link, you should be able to find it.through healthspan, well know herbal etc company. They now do, through another co. a vit D test, must be the same blog standard on but includes some sort of calcium test to see if it is safe for you to take the D. I do not know how good the Ca test is but the Lab has to be authorised so should be oK, £24. D is not a vit but a hormone, very likely to help. bloods WWW.thyroiduk.org.uk/tuk/te I use Blue Horizon for lots of things, everything is on their main site. Quote TUK for a discount.I would imagine if you showed the GP low D they would have the sense to do calcium anyway.
Diet ideally should be a diabetic diet, very unlike you would imagine, ie no grapes, little fruit no fruit natural drinks etc. See the WEB
Unfortunately hyper and hypo symptoms can the the same in some people,so be circumspect what you say to medics!
The only good test for adrenal glands according to my endo is 24 hour urine collection with tab of cortisone at midnight and blood test 9am. However even if low, as the only treatment nasty cortisone, try everything else first, ie to get the thyroid right. If corrected calcium, vit D and Parathyroid all high if bloods done at the same time AM. Then PTH investigations.
Thanks again Jackie, this is most helpful. Part of me keeps wanting to give up, then I get a bit more oomph and do more research. I can see I need to much more checking and to try.
How strange my doc/nurse were saying they couldn't do the D test as it had to get to lab in 10 minutes, when these other labs do different tests but obviously it goes via mail...much more than 10 mins.
I had one cortisol 9.30 am blodd test last year, it was something like 695 and top of range was 700, I have told doctors I wanted adrenals checked properly, they say as my cortisol was high, adrenals are fine. I read this could be the cortisol is working instead...and at the stage before total adrenal fatigue etc. I've had years locked in flight or fight mode before the thyroid showed up. Prolonged stress, not always a good diet due to finance etc...like most people.
I will do more research, I know full well I tended to live on bread and cereal with the odd ok meal in between due to money and stress...I have thought try gluten free....easier said than done as still poor and don't always have the other food in or energy to get it etc.....but I am trying.
HI The disgusting thing is my GP practice only do mine, no one else needs it! !! IAs they take 3 weeks for the result, I have given up, I need one every 6 weeks, now I just pay, Less hassle! The cortisone+ blood is only any use with a 24 hour urine collection, That is far more imortant than the blood test it is quite a sophisticated test, lot of 24 hour collections are, to analyse what you are secreting, no other way of knowing. I know my endo says that and actually very good and I am sure she is right. I still Ihink it is vital to try and get the thyroid right first, but Pituitary gland or parathyroid is different entirely.Caeliac does go with thyroid if autoimmune, Blood test, sometimes shows it but only after being back on the harmful ( for you ) food. A biopsy undergoing a colonoscopy is better. Even then, my endo had an articelepubished in BMJ in November, she has worked in this field as a REg, at a famous clinic in Oxford, She says, and my friends have found, if your tests all negative but you still need Gluten free, you probably are Caeliac.
Just remember thyroid disease is common but specialised so GP`s are unlikely to know much, even if good.
I hope you are soon feeling better. At least now plenty to read, on line bloods etc. When I first had Hypo none of that.and very little understanding.
I reallyappreciate your time and energy you have put into replying. I don't have an endo, it was deemed unneccessary. The docs literally say meds for life and whatever question i throw at them and seen half dozen docs, they all say the same, can't cure etc, they aren't trained to know the cause bla bla.
I will look into some other tests, though money is tight and will keep reading, but yesterday and today is indecisive stress day...lol....so close to taking tablets, then can't make myself do it...then scared as doc mentioned collapse.... I don't go far, so mostly home bound, but on own, so a bit risky etc. Everyone nagging "take the tablets" and if doc wants to retest (in couple of weeks...assumes I will be on levo) I really can't decide what to do this minute. Wish there was a TSH urine test....I am no good with bloodtests at all.
Thank you and you too, I wish everybody had a miracle cure with this and defo understanding
I speak from lots of experience of bad treatment. I have learnt to just insist on referrals, not ask! i do not like to be like that but your health is vital
I am finding trusting any doc or medical person very hard, which is part of the reason I can't make myself pop that first levo, but then trusting all these natural docs is another question, plus I can't afford to see one, but they do write a lot of logic...if it is true, so do they know or do they not...aargh, so hard to know what to do. I was happy to wait, if you like...when the scores were near normal, it was less threatening, now it is fear of what might happen if I don't take them against fear of committing to life on them....
I think there will be a point when I snap too...and whilst I think I have been firm, I haven't managed to get all I asked for...but I do ask different docs every time I see them...I can't find one that believes in trying to trace the cause of auto immune side....I know I had prolonged stress and not the greatest diet, then some kind of hormone disorder and thyroid was ok....then more stress and that was it then
hi Well I see some of the best docs in country ,have at least 12 autoimmune diseases, they all tell me ,you have to wait for them to pop up, but be aware. I made a mistake when I could not get treatment, The wrong treatment , I am told has caused a some of my heart problems. An endo, does look into everything.All good consultants are very keen on alternative medicine now a days. However, you cannot substitute the proper meds for natural treatment. Just too dangerous. You also need your treatment to be carefully monitored with blood tests. An endo has a huge knowledge of the body because of the type of speciality.As All my medical conditions are so complex, even though brilliant docs, they are good enough to listen to me and together we make all the decisions.
Just find the best docs for you, I cannot stress enough as so important ,you do not want a life time of ill health.
Hmmm...I keep saying it must be some other auto immune as was not right for many years...before. One of my concerns with Levo is it is meant to cause heart probs if underlying issues...I believe I have some kind of arrythmia, but they didn't find it, I get like a thud and missed beat and have to gasp, it makes me feel I am falling even when sitting. Docs have no idea on that either.
Time is passing but I haven't given up, just not found the right doc nor obviously consultant/endo down here and I can't travel...more issues there.
It is the danger I worry about, but feel I need more time to decide....against the odds, lol.. Thanks Jackie
Thanks Louise, that was none, as scores were so improved on second tests, all by themselves that decided to wait to see if stress levels went down and do supplements. Now ordered onto Levo, as it's risky to delay further
On the dietary side have you tried going completely gluten-free? Your TPO results suggest an autoimmune disorder: whilst excluding gluten won't stop autoimmune conditions it is believed to slow down their progression. You might also want to consider excluding some of the other common allergens, such as dairy.
I still need to try the gluten free thing. I think the problem is, balancing the lack of money, energy with alternative food.... I was stuck in the having bread thing as cheap and easy and money so tight, no food budget for periods too.
I was trying the selenium theory, a few brazil nuts to lower antibodies, but got worried about poisoning mself as so sensitive. This might be why I have ok T3 and lower T4....not sure, maybe I wasn't making enough but turned it into T3 too fast? Who knows.
Dairy is another thing as I think I have milk every day and often cheese.....you can see it's the main source of my diet...apart from making stews...with gluten gravy no doubt.
I had read that for Hashies the antibodies need to be into thousand/s otherwise it is thyroiditis or variants of hypo, but some might improve....so confused. If it was so easy to lower antibodies with brazil nuts, so the thyroid works again.....I think I am hanging on a thread hoping it rights itself.....then I get scared, like this new results indicate too high TSH to fix....although it lowered from 77 to 8 before too. But as this is the second time it's scored badly, I am almost giving in to Levo route...then I can't make myself take it, as it is stuck in my head, no going back, ie can't come off Levo once started, as gland dies down....think we need some definite answers......Hurry up...LABs/ Scientists/RESEARCHERS!!
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