Staying the course with self medicating

[imagisal]

I have been self treating for my Hashimotos for 8 months after 20 years of undertreatment with levo through the NHS and when I found a doctor who would increase levo dose I felt dreadful at a dose that suppressed my TSH (130mcg) So I came off T4 and treated adrenals under Dr P's guidance, checked vits and minerals and supplemented where necessary ie D3 and iron and then tried Nutri thyroid all of which saw my TSH increase from suppressed to back well over NHS 'normal' range (which is too high a range still anyway!!) I then decided to use T3 and have had two months of small split dose starting 6mcg and trying to raise to 25mcg gradually then going way back down to 6 mcg and no matter the tiniest dose I get a very delayed reaction of increased heart rate (sometimes up to the high 90's at rest) this can be over 12 hours from the smallest dose and I am confused as to wether this is due to too much or too little as have no other signs of over medication, ie tremor etc It is quite worrying when it happens. During this time I was referred to an endocrinologist who agreed to prescribe the T3 but only in a addition to taking Levo again (he is anti NDT due to the 'it has unstable dosing strength etc' old school of thought) he wants me to take 100mcg levo and 10 mcg T3 .............a few days in to that and I am feeling totally rubbish again, bloated and achy etc ....plus the rapid heart rate in the evening........I guess the one thing I can do is try NDT...or am i not giving any plan of action enough time to get settled and give my body a chance to adjust?

With all of this comes the mental fatigue of dealing with all the decisions and information around the whole area of thyroid issues........my brain is frazzled...I also have a work deadline where I am having to push myself hard.........plus a knee problem that has me using a walking stick....plus putting on more weight with each month and feeling desperate about that too. Sorry this has turned in to a moan fest...I guess I just know there are people on this forum who have gone through this journey , for much longer than I have and have stayed the course to regain better health.........any advice or insights would be most gratefully received.........I feel I have hit a wall and must regroup.

[lb003]

I have been there and your post reminded me if that lol. I know that it's frustrating for you as I too just wanted to be told what to take to make myself better, but unfortunately I have found that it's a cocktail of things and each of us will need a different mix. For me it was less stress, more rest, eating healthy no gluten, D3 B12 NDT and many other supplements. Try listening to what your body is telling you. It has taken me a few years to start to recover but I now wish I had made these changes earlier.

What are your B12 D3 Ferritin and Folate levels like? Getting them high in range will help you tolerate T3 better. Look up the dry sponge analogy it helps explain why you need to take it slow, particularly with T3.

There's so much information in this forum that will help you so keep looking and asking yourself what your body us telling you and you will get there.

[imagisal in reply to lb003]

Thanks so much for your reply I know I am early on in the journey and it's not a one size fits all situation but hearing your story ie a journey of two years and still recovering really does help me keep the faith. I often delve in to the archives as there is just so much great information, you learn so much from those that have gone before and those that are on the same mission to healthier lives.

I am just going to look in to that dry sponge analogy!!!

Thanks again.

[paulacat in reply to imagisal]

Yes I agree, listen to your own body we are all different and all things can have an effect on you thyroid, ie Adrenals, oestrogen, autoimmune which 90% of people with thyroid have and more, do lots of research about your body and symptoms, when you have your bloods taken make notes each time to see how your body is reacting, the best blood to have are (mind you some of these are only done when you visit an endo as a doctor can only order a few) the ones that should be done are TSH, T4, T3, free T4, freeT3, reverse T3 and antibodies, also if your thyroid is down your body will be depleted of D3 also as you say b12 and all the other bloods. I have found and you may want to research selenium taken with vitamin E , 4 hours apart from any other medications this will help you to activate T4 into T3 also your iodine levels should be up and you do this by giving up table salt (look it up and you will see it is made from chemicals and bleach,) the only salt you should use is Celtic rock or Himalayan this is true iodine that your body needs no more than 1/2 teaspoon a day if over 50 look up on line,no I have not got shares in it just horrified as to what and how it is made up just look up as to what your body is made up from and research I know you have but I hope lots read this so as you ay can look after your own body as I'm sorry to say the UK endocrinologist don't go into it enough as it is only a side line in most cases for them most treat diabetes or something as the UK teaching of thyroid is practically nil, sorry endo's but I can only go by what I have seen and read. Paula

[imagisal in reply to paulacat]

Thanks Paula, it was good to read your post. I have had such lovely responses with a wealth of reminders and new suggestions!! you have prompted me to renew my commitment to eating clean and paying attention to the nutrition......it's a challenge to maintain on all levels!!

[paulacat in reply to imagisal]

Hi imagisal, glad you liked my post, I am just about to start NDT after being on t4, for 15 years and still ill, I am lucky as I have a very good doctor, I have had lots of blood tests and my vitamin D was low so was my b12, this happens when we pass 60 years or even before also most of the food we eat has travelled a lot before it gets onto our table, I try to eat as much organic as I can. before I take my NDT I will make sure my vitamin and mineral levels are as good as I can get them, also if others are taking NDT I would like some views on how they take it, I have read to start very low grains 2 to 3 times a day and not to take it near iron, oestrogen, and calcium, about 1to 2 hours apart as it could bind thyroid hormones if taken together, and to slowly build up, it may take up to 4 to 6 weeks to be on the full dose.

I am going on NDT because I have done a lot of research with t4 only and what happens sometimes ( not always ) is that t4 does not always convert into t3 ( research this ) for many reasons. I also feel that TSH does not give correct range,because if t4 does stick and not convert properly, (you can find this out I believe if you get your free t3 and free t4 checked out ) (research this) my free t4 was normal but my free t3 was only half to what it should have been. ( I always ask for all ranges of blood test and check from previous ones) so this tells me my T4 is not converting very well it then can become reverse t3, I am hoping that NDT will correct this, I do believe it will, I will let you know my motto is research and cross reference at all times, not sure if this will help but it may put you on the right track to help you and find out for yourselves, it's our only hope Paula.

[humanbean]

"no matter the tiniest dose I get a very delayed reaction of increased heart rate (sometimes up to the high 90's at rest) this can be over 12 hours from the smallest dose and I am confused as to wether this is due to too much or too little"

This happens to me too. If you regularly get a high heart rate 12 hours after taking T3, then try taking a dose of T3 after 11 hours.

Leaving 12 hours between doses of T3 is a long time. Many people split dose, and take some every 4 - 6 hours. The heart speeding up is probably your body telling you it needs more T3.

If you take 6.25mcg of T3 and it turns out you don't need it, then any over-treatment symptoms will wear off within hours.

I would encourage you to experiment. I take T3 on its own and and in order to get the best response to what I was taking I experimented a lot. I experimented with number of doses and size of doses, in lots of different combinations. Some people take the same dose of T3 every time, others will take a big chunk of their daily dose in the morning, a smaller amount in the afternoon, and a tiny amount just before bed. Others take their whole dose first thing in the morning or last thing at night. Keep records, note down symptoms, if/when your heart rate speeds up note down the time it happens etc... This way you will find out how best to take your T3. And don't forget of course - you might need a higher dose.

The late Dr Lowe, whose articles and work are often referred to on this site, used to take 150mcg T3 just before bed and never had any problems. Other people I've read about only need 5mcg T3 per day. Don't be scared of T3.

[paulacat in reply to humanbean]

You should get your cortisol and adrenal etc levels plus make sure you are taking selenium with vit e plus all your vit and minerals read my article hope it will help but look it up all Paula.

[imagisal]

Thank you Humanbean. I had wondered about wether it was due to needing more T3 or different dosing but guess my confidence wobbled !! I will stay with it and split the dose, keep track of symptoms and try a small dose before bedtime. I guess I wonder what happens if I cant tolerate enough T3 to keep TSH in range...or does that matter if I feel well? My energy has improved since T3 and other symptoms ie headaches and muscle pains ...I dont want to go back to levo!! Thanks again

[humanbean in reply to imagisal]

This post is my opinion - and I'm not a doctor.

Doctors using the TSH as the guide to dosing keeps many of us ill. The more reliable way of determining whether or not you are taking too much thyroid meds is the FT3 level. Over-the-range FT3 may indicate too high a dose - although some people do keep their FT3 just over the range because that is where they feel well.

The problem is that you won't find many doctors who would agree with the paragraph above. They insist that TSH (which is a pituitary hormone, not a thyroid hormone) is all that is needed to indicate whether or not thyroid hormone levels are correct. They also work on the assumption that the pituitary works perfectly. They may test pituitary function, but it is rare. For a doctor, it is an all-or-nothing scenario - either the pituitary works perfectly or it doesn't work at all. I don't know about you, but I find that scenario unlikely - I believe in grey areas.

I was first told my thyroid was "borderline" but didn't need treatment in the early 90s. I was still considered fine about 20 years later, because TSH was just over the range (it was about 6), and FT4 and FT3 were rock-bottom but still just in range. I don't believe my pituitary was capable of producing any more TSH, so I would never be diagnosed as hypothyroid, but since my TSH was just over the range my pituitary would be assumed to be working fine by a doctor.

Really, it is up to you... Since you are self-medicating you can do what you want. Also, you don't have to agree to having thyroid function tests if you are self-medicating. Some people dose themselves only on symptoms, some people like to pay for their own tests. The choice is yours.

My point of view is that the current science isn't right. If what the doctors do keeps many people sick, then what the doctors are doing is wrong. I've made the choice to try and feel as well as I can, not keep my doctor happy. I self-medicate and pay for my own testing when I feel the need.

If at any time you feel you have been slightly over-dosing for some time, the best thing to do is to clear T3 from the body by missing a few doses, then re-starting the T3 at a slightly lower dose. I had to do this recently - my heart started going too fast, too often for comfort, and I was too hot. I stopped my T3 for 24 hours, then re-started my T3 having reduced dose by 6.25mcg per day. I still haven't decided whether or not things are right yet, but the signs are good. I haven't had any blood tests - I've just gone on the way I feel.

[imagisal in reply to humanbean]

Yes, I am just getting used to the fact that the test guidelines that the doctors are always referring to do not have to be obeyed! I will be getting T3 and T4 tested in a couple of months on endo follow up so will continue low dosing 3 or four times a day until then. It is reassuring to know that the T3 is short lived in the system if I feel uncomfortable with the heart rate and can back off or miss a few doses. I am also considering all this with a view to giving my 19 year old daughter guidance and options as she has high antibodies and many hypo symptoms and i dont want her to suffer un treated, she gets restested when she goes back to uni . I am very appreciative of your responses, thanks again.

[Marz in reply to imagisal]

I am T3 only and always knew when the next dose was needed - the heart would tell me ! Half an hour later it would be fine. I started taking my dose twice daily - in the morning - and before sleep - and found my heart would be telling me a dose was needed long before bed-time ! I have now increased both the morning and evening doses and all is well. Although the T3 is quick acting in the blood its effects can last a great deal longer I have read

Oh I was dosing four times a day - but found this difficult with supplements and a Cretan lifestyle of eating at strange times in the heat !

Hope you soon find your balance - you seem to be on the right track !

[imagisal in reply to Marz]

Hi Marz, yes, I think I lost my nerve and backed off listening to my body....I used to get alot of anxiety and panic attacks and my main concern was not setting myself up for more of those!! I think the dosing before sleep will be key as that is when my heart rate goes up so will split in to three doses with one at bedtime to try and keep the consistency.

[paulacat in reply to humanbean]

I look at the TSH as the front door the t4 as the middle door but unless you look in the rooms how can you tell what is working properly free t4 free t3 and reverse t3 none of these tests are done and that's the ones that really matter, you don't buy a house with out looking in the rooms do we Paula.

[frogandprincess]

I'm another self medicator, using NDT which works well, but I would not hesitate to use a mix of T4 and T3 if I couldn't get it. I too have experimented a bit, and recently have felt very well indeed, so much so that my GP hinted I might be a bit 'overcooked'. I have cut back my dose very slightly over a couple of weeks, and continue to feel OK, so I will have the blood test I take annually soon, and see where the TSH is. A recent TSH was 0.01, under the 'range' but I did have slight tremors of hands, indicative of being 'overcooked' I suppose. If you find you have to make these sorts of adjustments there are some very experienced people on here who will reassure you and help you do it with more confidence.

[imagisal in reply to frogandprincess]

Hi Frogandprincess. Good to hear from you. Your response and that of other members is so reassuring, thank you. My sister is being treated for Hyperthyroid, we are literally two extremes of thyroid disease and she was in a terrible state so I know the things to look for. It is a continuous assess and adjust situation I guess!

[paulacat in reply to frogandprincess]

Hi, I am about to use NDT and I looked up how to take it, I also seen on this list that taking NDT will give different test results your doctor should go by, your free t4 and free t3 these should be in the upper half of the range, but figure out where you feel best with your symptoms also avoid taking iron, oestrogen and calcium at the same time leave a space of time Paulacat

[Clutter]

Imagisal, 100mcg T4 + 10mcg T3 is equivalent to 130mcg T4 or 43mcg T3. You could reduce T4 to 75mcg and increase T3 to 20mcg and see whether symptoms improve.

If you want to go back to T3 only try 3 x 10mcg for a week while the T4 washes out and then increase to 1 x 20mcg and 2 x 10mcg. After a few weeks, when T3 has built up try splitting 40mcg into 2 doses 12 hours apart.

If you decide to try NDT you'll need 1.75 grains*. Try 1 grain morning and 0.75 grain 6-8 hours later.

This is the link to the dry sponge analogy referred to above thyrophoenix.com/adjusting_...

*Edited to correct NDT dose.

[imagisal in reply to Clutter]

Thank you Clutter...I have options which is good!! I must not forget that for years I did not know of these other choices I usually hunt around in the archives as there is so much info to answer my questions but getting the responses this morning has given me a boost and you have laid out some options and ways forward in a very easy to consider way for my tired mind!! Much appreciated

[Clutter in reply to imagisal]

Imagisal, I got the NDT wrong, you'll need 1.75 grains not 1.25 grains. I've edited my post to correct it.

[lb003 in reply to Clutter]

Thanks Clutter. I knew someone would know what I meant. I think I found this the simplest analogy to understand why I was not able to move from T4 only to an equivalent dose of NDT. My body was the sponge that had been deprived of T3 for so long that it couldn't soak it up. I havebeen dripping T3 onto that sponge for nearly 2 years and it's still soaking it up.

So hold on and be patient, we will get there. ...

[imagisal in reply to lb003]

I went to the website and read through and it is a wonderful analogy and has given me confidence and hope! Following everyone's posts I broke my T3 down into 4 doses and one of those at bedtime. No rapid heart rate through the evening and night ! I have some NDT on its way so will keep it as a standby option .

[Clutter in reply to imagisal]

Imagisal, that's good. I hope it improved your sleep

[Treepie]

You can tell your endo that Hilary Clintons doctor prescribes NDT for her!

[imagisal in reply to Treepie]

Yes Treepie .I think its great that someone so high profile has been prescribed NDT and that the fact of this has emerged....anything which sheds more light on modern thyroid treatment issues is welcome!