If you were me, would you forget the Levo and self medicate?

I know you guys aren't doctors, but I am really in 2 minds to know what to do for the best. After self medicating (with the help of a well known ex NHS doctor!) for 8 yrs and having some success, (My meds are listed below and so are my very recent blood test results. The blood tests were taken whilst I was on the meds below.) the NHS docs have finally agreed that I have an underactive thyroid. They have asked me to come off all the meds listed below for 8 weeks and to then to re test so they can see the "whole picture". They prescribed me (only) 25mcg of Levo to keep me going over the next 8 weeks, till then. I have never had Levo before and am reading some pretty negative stuff about it......

Should I risk starting from zero again and possibly getting seriously ill in the next 8 weeks? Should I risk the fact that Levo might not suit me and after a long period of giving it a go I will end up self medicating again anyway? Should I risk the fact that I may also need T3 but as my docs will not give it, I could end up having to self medicate anyway?

Or, should I stick with self medicating, (I feel I am 60% better with the meds I am currently taking and with your guys help, I could try changing doses/brands to improve on those blood test results, as I know they show I am under medicating.) and just fork out for blue horizon testing?

Honestly, I'm pretty scared about making the wrong move and ending up not being able to care for my 2 baby boys. I am 38yrs old. I am pre diabetic.

I posted yesterday, with my results, but I was missing an actual figure for B12. I have a number for that now, so I have added it in.

2 grains of armour 3 times a week.

25mcg of Cytomel 3 times a week.

C-1000 TR (vit C) 1 tablet, 3 times a week.

Coqu10 30mg 3 times a week

Nutri adrenal extra 3 times a week.

(In the beginning I also took some stuff to get rid of my constant thrush, but I can't remember what that was.)

Blood Test results:

Free T3 2.8 (3.5-6.5)

Free T4 8.9pmol/L (10.0-22.0)

TSH 0.22mU/L (0.10-4.00)

Vit B12 567ng/L (180-910)

Ferritin 67ug/L (10-291)

Just looking for a bit of feedback and your opinions really.

Thanks in advance, El xxx

34 Replies

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  • No-one, I think, can really answer your question but if I was asked to stop a programme on which I was 60% better and with children to consider I think I would be very reluctant to not take thyroid hormones at all with trepidation.

    I am not too good with bloods but if a doctor only took face value of your TSH he/she would immediately ask you to reduce your dose, without taking into consideration your very low FT3. As your hormones both contain T3 I don't understand why FT3 is low.

    You need an increase and I wonder if you are thyroid hormone resistant which means someone only feels best on T3 only. Bear in mind I am not medically qualified at all. I have hypothyroidism.

    Considering you are taking both 2 grains of armour 3 times a week 25mcg of Cytomel 3 times a week I would expect your FT3 to be higher than it is at least the low end of the range. FT4 will be lower when there's T3 in the mix. Your B12 is to low and new research shows we should aim for 1,000.

  • Thank you. I had never considered just taking T3 alone. My doctor /can't won't prescribe this at all, so I would definatly have to "go it alone" if I wanted to try this. Just out of interest. If I am thyroid hormone resistant and I go down the route of taking Levo only as the docs are currently suggesting, what might happen?

  • If that were the case, it's very unlikely that your doctors would ever give you a high enough dose of levo to make you well. You would need a more or less high dose, ddepending on how well you convert, that would probably suppress your TSH, and you know how doctors hate that! It terrifies the life out of them!

    But, l don't think it is the case, because you said you felt 60% well on just that tiny, irregular dose you were on. You would possibly only need a small increase to make you feel 95% well - we rarely get to 100%. But, there again, it depends how well you convert. And that's a big unknown at the moment.

  • So do you think I should try increasing my dose of T3 (Cytomel) as well as my NDT?

  • Best to increase one or the other, not both at once. Why not try increasing the NDT first, see how you feel. It's all trial and error, anyway.

  • Thanks. So should I forget the t3 altogether for a while or stick with the t3 dose I currently take & slowly up the NDT?

  • Stick with the T3 you're already taking. Upping the NDT will increase the T3 more slowly, and will give you a chance to see if you're converting, possibly.

  • I'll stick with the amount of T3 I am currently taking as suggested, but presumably, I should share my current weekly amount out over 7 days, therefore making it more even?

  • Yes, indeed. That would be much better. It doesn't matter so much about the T4, because that's the storage hormone. But the T3 should be in equal doses every day.

  • Perfect. Thank you sooooo much, I really mean it. I have a feeling this forum may help turn my life around.

  • I sincerely hope it will. :)

  • I've been on levothyroxine (if that's what you refer to as Levo) for many years with success. The dose has fluctuated due to age, menopause, stomach/absorption issues, etc., even not following the directions properly and consistently--but I'm sure I'm better off for it. I got tired of the varying blood tests and said to my doc, what would happen if I just stopped taking the med altogether? "Oh, nothing much. You'd probably gain about 30 pounds, maybe your hair would fall out, and your energy level would be very low..." I'm sure my dry skin is at least partially attributable to my hypo.

    So, no, I wouldn't recommend taking no meds at all on your own and I'm sure a doctor wouldn't either. The endocrine system is delicate and important. Do what you can to keep it in balance. Good luck.

  • Thank you for taking the time to reply. I posted this about 6mths ago. I decided not to take the Levo from the doctors & I continued to self medicate using private blood tests & this forum to help me stay on track. The doctors know so little, that I just couldn't put myself in their hands, esp after they had mis treated & mis diagnosed me for so long. (My GP wouldn't give me any T3, so even if I took the Levo, I would have had to self medicate the t3 anyway.)

    & the results? I have never felt or looked better!!!!! I see other people being messed about, having their dose decreased, even though they are still sick, being treated by no's instead of their syptoms, & I am confident I made the right choice for me, though I appreciate that everyone is different.

  • Good on you. You are no doubt better off in the thorough U.K. health care system. I envy you that. I wish you continued good health!

  • Thank you, same to you.

  • Oh, and I have just bought a B12 supplement today.

  • Shaws, Eleanor may be taking two T3 containing 'meds', but do the sums. With this strange dosing schedule she has, I work it out at an average of 32.5 mcg T4 per day, and 18.4 mcg T3 per day. If my calculations are correct! Well, on a dose like that, you would expect her FT3 to be low - well, I would, anyway. Especially if she can't convert very well - that which we don't know, of course. I cannot understand how that is supposed to work.

    Eleanor, whilst, personally, I would continue to self-treat, rather than go back to levo, I would want to be on a more even, higher, daily dose. Doctors always want you on levo - as I think I said before - because they don't understand anything else. The problem is, though, they don't understand levo, either! Myself, I would never let another doctor get anywhere near me and my T3! I would not trust them to have my best interests at heart. But that's me, and everyone knows my opinion of doctors!

  • Thank you for your reply. I am worrying that the Levo will be a backwards step. If I do self medicate, then the 1st thing I would look to do is "even out" what ever dose I decide on. You are right, it does seem like very strange dosing. I didn't ever question it till I came in here & started reading all the posts!

  • Greygoose is right and her advice is good.

    To safely self-medicate, info is in the link I gave below.

  • Thanks Greygoose.

  • Just in case, I posted this the other day and it may be of interest.

    web.archive.org/web/2010112...

  • Thank you, I will read this tomorrow.

  • Hi Eleanor

    Doing the maths (as I see others have before me :) ) you were on slightly less than 20mcg of liothyronine and slightly more than 30mcg of levo a day. That's nowhere near enough I don't think, considering we often see replacement doses here of 100mcg of levo and 20mcg liothyronine a day.

    And you're now on a dose that's slightly less levo than you were taking each day *without* any liothyronine. Definitely not going to be enough! An equivalent dose of levo (taking the conservative estimate that 20mcg of liothyronine is equivalent to 60-80mcg of levo) would be 80-100mcg of levothyroxine a day. Which still probably wouldn't be enough because you say you only felt 60% well. And you're on 25mcg and it'll be a few weeks before the doctor even contemplates putting your dose up to 50mcg...

    So what would I do? Well - it is just my opinion and like nearly everyone else here I'm not a doctor - but being the impatient sort I probably would give up on waiting for them to prescribe enough levo. As you say, that could take months and months.

    I think if I were you, I'd probably start taking 1 grain of NDT a day, raising it to 1.5 grains after a fortnight, then raising another half grain a fortnight after that if I still felt I needed more. Standard advice is to stick at 2 grains for 6-8 weeks as it can take a while for all the levo to kick in. It's what I did, anyway. After that, a blood test to check FT3 can be useful and if you still need more, you can raise it again, perhaps in quarter grain increments, to find your sweet spot. Mine is 3 grains a day. I take Nature Throid which is roughly half the price of Armour, and others here do well on a Thai version of NDT which is much much cheaper.

    I have to admit I'm rather puzzled by the dosing schedule Dr P had you on - did he ever explain his rationale?

    Anyway, just my twopenneth - definitely not to be construed as medical advice. :)

  • So do you think I should try increasing my dose of T3 (Cytomel) as well as my NDT?

    I don't think Dr P ever said why I was taking such an even dose. To be honest, it was 8yrs ago, and I knew nothing about what to ask, what I should I know etc (I only found this forum this week.) so even if he did, it probably won't have stuck in my mind as it won't have meant anything to me.

    My Nature-Thyroid has just arrived, (I decided to switch when the price of armour went up again) so when my current bottle of armour runs out, I will be on that.

  • No, just try Nature Throid alone to start with. I think you'll need to be on 2 grains within 6 weeks or so, but it really is best not to rush things - 1 grain a day should have you feeling much better than you are now. You'll know when to raise, especially if that coincides with the 10 day mark.

  • Thank you for your help. Fingers crossed....

  • Eleanor,

    If you felt well self medicating, why did you stop ?

    Many do well on Levothyroxine, although 25mcg is a small dose and often encourages the thyroid gland to rest so producing even less hormone, making you more symptomatic.

    Did Dr P suggest you only medicate on certain days or did you take meds alternately ? T3 has a short half life and members usually find it helpful to split a daily dose. I couldn't manage to miss a whole day of mine.

    Insulin resistant and blood sugar problems are classic of people with low thyroid hormone and adrenal issues. If you come off needed thyroid hormone replacement for 8 weeks, you will probably feel terrible, depending on how low your thyroid levels get. The hormones will also take a while to rebuild putting terrible stress on the adrenals glands that will try to compensate.

    T3 levels (active hormone) are too low indicating you are slightly under medicated. T4 & TSH are fine as you are medicating T3.

    What about folate and Vit D ? ? ...

  • I felt better, but I'm not sure I feel fully well, so I was hoping that the NHS could be the ones to get me to the next stage.... My doctor was panicking a bit about me self medicating, I felt that it would save me money if I was getting my meds (or the majority of my meds) from the NHS. I liked the idea of regular (and free) blood testing to monitor me to check everything was going well. I assumed that docs would know more than me...... Obviously I spoke to them a bit more, I began to question that last part! I researched levo and the fact that there are no alternatives if it isn't right for me etc and now I have doubts. I want to get better then why I am now and she asking me to out her trust in her to start back form zero. I'm not so trusting as they left me untreated for 20 yrs....I think I was just relieved and grateful to finally have their acceptance of my illness. I know, I know, crazy.

    My docs won't test for vit D. She just suggested I take a supplement for it....

    My folate is 24ug/L

    I have noticed that some people split their daily dose of T3-seems like a good idea to try.

    To increase my dose, would you increase the T3 as well the NDT?

  • Eleanor,

    Some can mange to medicate a large dose infrequently but for those with issues, I think it more sympathetic to medicate smaller doses more frequently (at least until stabilised.)

    As your bloods indicate you are under medicated, you need a dose raise but I can't comment as don't understand your protocol of only medicating T3 & NDT (containing T3) on certain days. I have to split my dose into am & pm (& previously split it into three).

    We all want to be "looked after" but the free medication Levothyroxine prescribed on the National Health Service can not be tolerated by all and the free blood test usually doesn't include the necessary T3 (which should be done when medicated).

    GP's are only general practitioners and most endos don't know a lot more. If I was you, feeling "almost well" by self medicating, I would continue and investigate ways to achieve that "last bit" ie possible low Vit D level, supplementing Vit B12 to raise levels to 1000, adding selenium, etc, etc ...

    .

    Vit D testing

    thyroiduk.org.uk/tuk/testin...

  • Thank you for taking time to reply. After doing a ton of research and talking to you guys (thank God for you guys, where have you been all my life??!!) I have upped my NDT dose slightly and am taking it daily. I have kept my T3 at the same dose, but am taking it daily. I will keep you all posted....

  • I'm having difficulty getting my head around your odd regime of irregular dosing. T3 has a half life of around 8 hours, so your levels must be going up and down like crazy! And your single blood test is going to tell us very little other than your exact levels at that point. You probably won't feel it, though, because once T3 is in the cells its effects last for several weeks.

    I self medicate with NDT. A couple of years ago I allowed myself to be persuaded by a panicking doctor to switch from that to levo. I was just so tired of the constant pressure from the doctors, and I had only tried levo for seven months when first diagnosed (13 years earlier), and thought maybe it might work. In eight weeks I gained eight kilos, and I felt absolutely terrible! I still have not lost that weight. Its taken me two years to restore my sleep patterns to something approaching normal. I did learn from that episode that I don't convert levothyroxine, although I do seem to convert the T4 in NDT.

    So with that experience would I allow a doctor to mess with my regime again? Of course not!

    But I agree with others that you look under-medicated. I suspect you could feel a whole lot better on either NDT alone (the same dose every day) or T3 alone (also the same dose every day) but more of whatever you choose. Its difficult to say which would be better, but I would probably go for NDT because it is cheaper (online), easier to obtain, and you don't need to mess about with split dosing. So I suggest you consider dropping the T3, replacing with NDT and then gradually increasing until you feel at your best. If it doesn't work too well, you always have the option of trying T3 only, or even going back to what you are doing now. But to me 60% is pretty poor!

    The very fact that you have a TSH of anything at all while on T3 containing medication is an indication that you are not on enough. TSH is slow to respond (even though it varies according to the time of day) to thyroid changes. So you can take it that you are under-medicated - it should be near enough zero!

    All that having been said, you are going to be in for a fight - although you will probably have one to get adequate levo anyway. So you kind of have to accept that if you want to be well, its going to be an uncomfortable relationship with the doctors.

  • Stick with self medicating I say!

  • If you have two babies to look after, I would definitely say do not come off your thyroid medication. I did that for GP and endo 'to get back to basics and see what's happening'. Total nightmare, felt like constant flu, sleeping all the time. A Blue Horizon home blood test - Thyroid Check Plus 12, will show you exactly what levels you have of TSH

    , FT4, FT3, Thyroid Peroxidase Antibodies, Thyroglobulin Antibodies, Ferritin, Folate, Vitamin B12, C Reactive Protein, Vitamin D & Reverse T3 (currently £139). But get them free from your GP if you can. Having read your dilemma in your post, from personal experience I would say don't put your trust in the NHS GPs or Endos. Even if you did come off all meds they won't necessarily know how to medicate you correctly. They honestly and truly don't know anything about thyroid illness; I've spent 30 years waiting for them to get my medication correct. In the end it was T3 only medication that turned my life around. Good luck x

  • Thank you for sharing. What happened to you is exactly what I'm worried about. I will be taking the blood tests you have suggested.

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