I have decided to restart my Levo medication but I have some outstanding questions about it.
* Will it affect the suspected adrenal issues I have?
* Is it a good idea to build up the doses or go straight into the 150 mcg dose?
* Should I continue to take the Vitamin D, Vitamin B12 and iron supplements as directed?
Thanks
Jo xxx
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Hi Jo, do you think your thyroid was producing T4 while you off your hormone pill? I don't think I've read about this situation but I think your body may need time to make adjustments as you change your outside dosage. It may be a shock to start taking 150 all at once. Did you get along well without taking any?
Hi Heloise, thanks for your reply.
Well, I think my thyroid was producing T4 while I was off the thyroxine, yes. At least, that is what my TSH result from January says. It was 2.7 (0.27-4.2). But no FT4 result.
I didn't feel any different to when I was on them to be honest.
Jo xxx
TSH can take a while to go back up and for the effects of the thyroxine to wear of completely.
A vitamin D deficiency won't be helping matters and may be part of the problem. I felt awful with a vitamin D deficiency. Vitamin D is involved in hundreds of metabolic processes. Perhaps your thyroxine will work better once your levels are better.
I agree with heloise about starting slowly. You may also miss your ideal dose if you go straight to 150mcg.
It might be wise to continue with your supplements too. All those deficiencies can impact how well your body is able to use the thyroxine. Adrenal issues will also have an impact on this and increasing your thyroxine too quickly may impact on your adrenals. On the other hand, being unmedicated for too long won't help either.
Sorry you're having such a rough time getting to the bottom of this.
Carolyn x
Hi Carolyn, thanks for your reply.
I'm guessing I have always been Vitamin D deficient but I don't know why my TSH would be going up and down from this.
Also, my iron levels are now much better so I can't understand why iron deficiency related symptoms such as fatigue are still present even when the TSH was normal before and my iron levels are better than they were before!
Jo xxx
Well, if you were off your thyroid pill for two months and didn't feel any differently, I wonder if optimizing your other deficits has improved your own thyroid production. It takes quite a while to raise D levels. I think it is either a prohormone or prehormone and not really a vitamin and has implications for your other hormones.
As Carolyn mentioned, you may not need the same dose you were taking. Is there any chance you wouldn't need any at all? Those videos by Dr. Clark do suggest it is not always a T4 problem or JUST a T4 problem. Of course, the NHS sees it ONLY as a T4 problem .....well, after depression and obesity.
Hi Heloise, thanks for your reply.
I haven't taken the Vitamin D for long - since December last year and my Endo has said that it takes anywhere up to 6 months for Vitamin D symptoms to improve.
I haven't taken the Vitamin B12 for very long either and I haven't taken the iron supplements since October as I have had very bad reactions to them.
Jo xxx
Then I will assume they haven't made the difference but am I recalling correctly that you pressed hard for thyroid treatment back when you started? This is quite the puzzle.
Well, at the time I was diagnosed with hypothyroidism I didn't know anything about T3 or NDT treatment if that's what you mean. Sorry I am a bit confused about your reply.
Jo xxx
I thought they refused to diagnose you as hypothyroid at first. Am I wrong?
I pay about $20 for 100 T3 (25 mcg.)
Out of the boxes of medication I have, I have these left:
28 x 50mcg Levothyroxine (Actavis)
2 x 25mcg Levothyroxine (chemist's own)
So I was thinking 50mcg for a week and then moving it up to 100 the week after? Or is that still too much of a jump too soon?
Thanks
Jo xxx
Hi Jo- How long ago have you stopped your meds- is it just a few days or weeks- and did you stop them suddenly or taper down to stop? x
Hi Friz thanks for your reply.
I haven't taken them since October. I did restart them in December but this was not for long. I stopped them suddenly too.
Jo xxx
Seriously Jo you haven't taken thyroxine since October ? did you not think that could be why you have been feeling unwell ? your GP and Endo were presumably under the impression you were taking them.
Hi, sorry, I had to correct my reply to Friz.
I haven't taken them since October but I did restart them in December. This was not for long. I wasn't feeling well even when I was on them.
Jo xxx
You have to tell your GP and Endo what you have done and are doing with meds as your results will be wrong and it is unfair to expect them to treat you correctly when they don't know the history of stopping and starting the Levo. Depending on how long you have been off them it will take time for levels to settle down again and you will need extra blood tests to see what your levels are doing.
Hi.
Well, I stopped taking them as they did not diagnose me with Hashi's at the time. I was left with no answer from them.
And I didn't want to have any hassle with any doctors as I did before.
Jo xxx
But they diagnosed you hypo which is the same, treatment is the same.
Oh Jo, what you been doing!! How can you expect answers and help from the medical people if you listened to them, take the pills to maybe start some improvement and then decide you know better and stop them,then feel ill again.You seem to spend so much time endlessly researching what may be wrong,asking for the tests getting some answers,then dismissing what you've been told. yes it may be in the end you are right with your interpretation of what's wrong with you but if you seek help and are given a treatment it's really only fair to stick with it long enough to give it a fair chance to work without starting and stopping somewhat willie-nillie.Would have thought now any tests you have results will be screwed and not be representative of your true condition.
Hi Cupi
The GP at my last practice didn't listen to me though so I thought it'd be the same thing over again.
I just can't understand what is going on with me and how to come to terms with it. Because of everything else going on in my life I can't work out what to do and feel like life is not worth living anymore.
Jo xxx
Personally, I think your experiments have been informative. The fact you did not feel good on the original treatment makes me think you may not have dosed up correctly or T4 just isn't the correct product for you. If you agree, what did you decide about T3 only or NDT?
Hi Heloise.
I might go for T3 but only if I can get it cheap enough.
Jo xxx
Jo do not self medicate with T3, you don't know what you are doing and you may not need it. You need to get back on Levo and give it time to work but you must work with your GP and Endo. You have already got yourself into a mess so don't make it worse by trying to go it alone. T3 is not to be messed around with, my husband has been on it since Dec and it's proving very difficult to manage.
Hi Hypohen,
I have taken your and other peoples' advice on board and through my practice's manager I have arranged to speak with my GP about me stopping my meds. She will speak with me tomorrow about the best plan of action.
Jo xxx
Ah Jo! I hear what you are saying and can truly understand your bewilderment.Its so especially hard when you're still young to find that your body is not acting quite as you assumed and hoped that it would. IMHO, when we're younger we want answers NOW,action yesterday,get it sorted and put it right -and when that doesn't or can't happen real quick we feel like screaming,we're angry and hurt and fight tooth and nail for it not to be so,and acceptance of how it is is probably the hardest thing of it all.Thats the downside,but there will be answers for you just down the line a little that's all,and it's more than likely given time for different doses/treatment etc to settle and equalise you will feel differently both physically and emotionally.Yeah,it's a sh...tty thing to have any health condition particularly at a young age,but it needn't stop you doing all the stuff you've dreamed of and more.its not a life sentence of ill health tho no doubt it seems it to you at the moment. Thyroid and associated complaints can and are very treatable for most people and there's every chance that will be so for you too but you must give it all time to start to work and then stabilise.unfortuately it can be a while for that to happen so if you chop and change your meds to soon/often it will take longer in the end to get where you want to be. Sorry if it sounds like a lecture Jo,not meant to in any way I just feel for you at the moment and so hope that in say 6 months time (THAT LONG you scream!!!) you will be feeling fitter and starting to embrace life once again,sure you will.hugsx
Hi Cupi, thanks for your reply. Hugs back. 
I don't mind your answer being long at all. I've spoken to my practice and I have an appointment tomorrow to get this sorted and get me back to where I should be.
Jo xxx
The notification I had of a response you have presumably deleted. You said at the time of taking Levo you weren't diagnosed with anything so how did you get the Levo prescribed ? I think in your other posts you said you were diagnosed hypo in May last year ? some confusion going on here Jo !
Hi Hypohen,
Sorry, yes. I did delete the response but only because it duplicated. How about I go over everything (as it happened) again? Not a problem for me.
Jo xxx
I really think you need to get TSH, FT3 and FT4 tested to get a true starting point. I too wonder if you need some T3 in some form. T4 did nothing for me either and its only when I got some T3 (in the form on NDT) that I started to feel better. xx
Hi Clare, thanks for your reply.
Blood tests are up again. No idea about what the latest ones are but I should know tomorrow.
Jo xxx
Not taking your meds is a bad idea im on levothyroxine the rest of my life and i stopped taking. them and had sepsis and went into kidney failure because of it...i also lost my baby i was pregnant with...when restarted they started me back on 25 mcg for 3 weeks 50 mcg for 3 weeks and slowly worked my way back up to 200 mcg a day.
Also if your worried about cost dr usually has samples or i get 100 for $4
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