I've recently been diagnosed with Hashimoto's Thyroiditis. Its been ongoing for years. I first went to GP for blood tests as I was so ill 10 months after having my little one. I had gotten glandular fever that had wiped me out. It was like an illness I had never known before.
So I went to GP to find out why I was having so many symptoms. He ran some blood tests and said there was nothing wrong with me just that my antibodies for glandular fever were present so that told him and me that I had suffered the illness. Finally it clicked. He prescribed anti-depressants. Didn't do anything for me or my symptoms. Refused to entertain the idea of Thyroid.
Throughly dejected, I walked away and tried to get on with things as best I could. A year later I foound out I could get private results for thryroid done - so I did. Costly but worth it. The Doctor that did the tests privately, said Hashimotos straight away.
So, I went back to my NHS GP armed with the results. I got sent to see and Endo, had a scan in my throat because of the lump 9goiter), cortisol tested and Vit D prescribed. All this to be told that everything was within range and I was either depressed or something else. I was then refered to a Chronic Fatigue Clinic that confirmed thats what I had. No treatment but a fortnightly meeting with other suffers of CFS was offered. I didnt take them up on the kind offer.
So fast forward 3 years on.....and at my wits end, I went private again. This time the Private GP put me on Levothyroxine. My own GP is somewhat annoyed that I have gone private but finally agreed to refer me to an Endo again (still waiting for hosiptal appointment) but refusing to give me Levo. Don't know why???
My Private GP has ok'd me to try T3 based on my results and see how I go with the that.
I was just wondering if anyone has seen improvements with T3 and how long did it take.
Thanks
Teri x
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TeriG
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Impossible to answer that question without more information - like blood test results (with ranges) - how low is your FT3? How well are you converting? And, it depends on how much your doctor prescribes. Is he prescribing T3 only? Or with levo? How much levo?
T3 will help you if you need it. If your T3 is low, and you raise the level, it should make you feel better. But, it's not just about hormones. Have you had your vit D, vit B12, folate and ferritin tested? These all need to be optimal for your body to be able to use the hormone you're giving it.
I'm getting my thyroid bloods done again next week. Im also getting Vit D, Folate and B12 done.
I have an added problem in that I am also a carrier of thalasemia. My blood cells are very small whcih is causing the spleen to work harder. I actually don't need anymore iron as I had that tested.
I have been taking supplements though for Vit D, Vit C B12. My nutritionist has recommended them together with some other dietary pills for the gut. Im also on an elimination diet at the minute - diary and gluton free.
I'm on Levo 75mg and T3 25mcg daily. I started with 25 mcg and I felt so ill. The increase to 50 didn't do anything but the 75 seems to have done something.
You don't say what you were taking when those labs were done. But, if you were on 75 mcg T4 only, then your conversion doesn't seem to be too bad. You just needed an increase in levo, because your TSH was still too high, and your Frees too low. As you have Hashi's, you really need to keep your TSH suppressed.
Your FT3 is still quite low, so it may take a while - and maybe an increase or two - before you start to feel better. You'll probably need it up the top of the range.
OK Well, you weren't really hypo at all, according to those results, which is probably why your doctor said you didn't need levo. He would have no understanding of Hashi's and antibodies!
So, whilst you do need your TSH to go down to zero, do be careful not to over-dose, because that will bring its own problems! You need to keep your Frees inside the range.
Thanks Greygoose. The GP and Endo at that time ignored the antibodies and goiter in the throat completely. Just sent me off to a fortnightly group to talk with other sufferers of Chronic Fatigue Syndrome. In the mean time my antibodies and health got worse.
Yes thats correct. 75mcg Levo and 25mcg with no reduction. I am not splitting the dose. I take them all at 7.30am.
I'm also attacking my hashimoto's with a gluten and dairy free diet. Over a week into this (nearly two) and I see my nutrtionist in two weeks. I'm on an elimination diet. I just feel this condition needs to be looked at from all angles and I need to give myself the best chance of turning this around.
I saw an improvement about a week ago but the past 2/3 days I've been feeling cold and tired again.
I'm due to see my private GP next Wednesday for tyroid tests and vitamin tests. My Iron is good.
I've been supplementing for the past 4 weeks everyday on Vit D, Vit C, Selenium, B complex + 12, 5HTP, Evening Primrose. My nutritionist also asked me to take Nutri Advanced T Convert (gum guggal) and Betaine Plus HP which I am. I also ran all my supplements past her. She recomended I increase the Vit C and get my Folate Vit D and B12 tested (which I am doing next week)
It sounds as though you have a good Doctor and consultant. Most of us have had the T3 removed from us with no where in this country to obtain it so that we can start to self medicate.And that is the NHS consultant and for me a private consultant also;.
My NHS doctor is pants and so too was the NHS consultant. My nhs doc has refered me to the endo again and I'm still waiting for an appointment Ann. The priavte GP is the one thats helping. Him and the people of this site
I am going to struggle Slowdragon you're right. But, I truly believe the way forward is to resolve the gut issues in any event. That just can't continue. Worse case scenario I have a bit of time trying to balance the T4 and T3 meds. The temptation is to increase - the T4 but I'm holding fire on that for a least another 4 - 6 weeks.
I would definitely agree with Clutter you have made an enormous leap up in medication and at same time changing to gluten free and improving vitamins both of which may also improve absorption & up take of thyroid hormones
Having been over medicated in the past my self (I was impatient & increasing too fast. Didn't know at time I was gluten intolerant either)
I would say over medicated was even worse than under medicated (which is why doctors are so cautious) and extremely difficult to evaluate as over medicated symptoms can be almost identical to under medicated ones
Your thyroid levels would not normally warrant being prescribed Levothyroxine. NHS doesn't usually diagnose hypothyroidism until either TSH is over 4.2 or FT4 below 12.0. You are rushing things to start taking T3 after only 8/9 weeks on Levothyroxine. It can take several weeks/months for symptoms to improve once you are optimally dosed.
25mcg T3 is equivalent to 75mcg Levothyroxine so you have effectively doubled your dose and are likely to become very overmedicated quickly. I personally feel over medication is a lot more unpleasant than being under medicated.
Thyroid peroxidase antibodies are positive for autoimmune thyroid disease (Hashimoto's). There is no cure for Hashimoto's which causes 90% of hypothyroidism. Thyroid treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies. Hashimoto's made me very unwell although my thyroid levels were unequivocally euthyroid (normal). I wish I had known to try a gluten-free diet at the time.
Thanks Clutter. That's why I managed to find a good private nutritionist to try and help me. My NHS GP wouldnt refer me to one despite me showing him information between the connection. He just simply refered me straight to the endo. He was just put out that I went to a private GP for further thyroid tests.
I'm acutally on an elimination diet at the minute. Nearly two weeks so far. No dairy and no gluten.
I'm a little worried about just stopping T3 in case it causes me problems albeit only been on it for 4 days so far. I wonder if thats why for the past two days Ive been feeling tired and cold again?
It won't harm you to stop taking T3. More likely to cause harm if you continue taking it.
An elimination diet is to see whether you have intolerances to food groups. You may not have an intolerance to gluten but some people think it may still exacerbate Hashimoto's. Most UK GPs and endos don't understand Hashimoto's or nutrition. Nutrition isn't taught in med school so why would they?
Thanks Clutter. I actualy had intolerance testing done (private again) which came back as intolerant to milk, wheat, cocksfoot (no idea what that is but it doesn't do me any good) and so on. I didn't do anything about it at the time because I was just feeling so ill with all the symptoms and also just suffered a bereavement.
I do think its been an exacerbating factor for my Hashimoto's. I think the trigger was glandular fever.
Ok, so you guys have me convinced on knocking the T3 on the head. May just increase my levo to 100mcg in next few weeks as suggested and see how I go.
Hi Teri, some people notice a difference straight away when taking T3. Others, like me, take more time before things improve. T3 takes about 6-8 weeks to get into the cells from the bloodstream. Your doctor has a cheek, doing absolutely nothing for you then getting annoyed because you rightly decide to take your health into your own hands. I should be used to these stories of doctors' eogtistic arrogance and smugness by now, but it still grates.
I was taking levo for 18 years, and while there was a small improvement, I still suffered debilitating symptoms. Despite reporting these symptoms to my GP, he dismissed them and said I was depressed. It's a familiar story, always having to fight.
Last year I did some research, discovered t3, my GP dismissed it so I went private too, endo dismissed it. That's when I decided to try t3. My first port of call was to read up on it, 'Recovering with t3' by Paul Robinson. This describes all the science behind it, how the thyroid works, how t3 works, and how to begin t3. I would advise you to read it, it is essential reading as it's not an easy med to take. It depends on other things. Yes, I'm much more stable, but I'm constantly monitoring the use of t3, and may not be able to take it anymore.
You need to give levo a good chance: 3 months is nothing, it can take upto a year to really know if it works. The book will also help you work out if you do have a problem converting t4 into t3, the real reason to take it
I would X the t3 and give the t4 a chance. It doesn't sound like that happened. It takes six months to a year before you see dramatic changes. But they are happening. Take 100 mcg of t4 and cut out the t3. T3 works immediately. Two weeks for me to have all my symptoms gone. It's in the blood then gone within the day, while the t4 remains and is converted gradually to t3. But too much t3 will give you the same symptoms as too little, plus racing heart etc. So can be dangerous if you don't actually need it
There is a clinic at attenbrokes hospital in Cambridge specifically for thyroid with doctors who specialize in people who are t4 resistent. I'm hoping to go there soon. You could go privately right away.
Thank you. Sounds like good advice. I'll give it some thought. I am wavering towards knocking T3 on the head. I've only been taking it a few days. I started on levo on 25mcg for 2 weeks and felt worse. Doc increased to 50. Slight improvement but not much. So, 2 weeks after that 75mcg which Ive been on for 5 weeks.
Probably gonna get what for now aren't I for going straight to T3 after only 8/9 weeks of Levo in total.
Thank you to you all for the advice. I'm going to order Paul Robinsons book and look at the website. I was thinking about an increase in Levo ....just waiting for next week to do my tests again and see where I am at. Thanks again and I'll keep you updated.
Interesting and you should feel much better. My story has similar threads to yours. We must be persistent whatever we are fobbed off with an distended to our own bodies. Good luck Ann S
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