Help with self medication please

Hi there,

I have been diagnosed with subclinical hypothyroidism, and was treated by Dr who was clueless and then referred to endo. I was on 100mg of levothyroxine and my TSH was 0.05 in October, although I was feeling very well on this dose and had to argue with the consultant to stay on this dose - they wanted to reduce me to 75mgs, but all my symptoms came back. His argument was that my TSH was too low and that I had a high pulse rate (93) which put me at risk of atrial fibrillation and osteoporosis (I do have osteopenia which is being treated with a Vit D & calcium supplement), although I think this stems from a lack of dairy in my 30s due to a gall bladder attack.

In Feb I started to experience symptoms of Thyroid Eye Disease - very dry eyes, which ran, and were worse in dry heat and evidence of bulging eyes. It was at this point that I decided to self-treat with Thiroyd from Thailand. I started taking it on 19 March and stopped Levo. I was gradually increasing from 1 grain to maximum of 2.5 grains when I started to experience over-medication. Fluid retention and eye problems again.

I reduced to 1grain and slowly started to increase - I am now on 1.5 grains, but I still feel tired. My pulse has reduced on NDT and tonight it was 82bpm, but early in the day it's been as low as 62bpm.

I have had blood tests done by Blue Horizon and they are attached. I think TSH is very suppressed (worse than when on Levo), please can you help me see whether everything else is OK. I feel generally OK, but tired. Would you increase to 2 or 1 3/4 grains?

Any help would be gratefully received.

12 Replies

  • I doubt your bone are due to you not eating dairy. There are a lot of people in the world who can't eat it.

    Most people need to supplement with vitamin D plus things like magnesium, K2 and zinc but not the calcium.

    Simply as there are lots of sources of calcium including tap water (if you live in a hard water area), green leafy veg and fish.

    Japanese people tend not to eat dairy at all but don't have bone issues like we do in the West due to a diet high in veg and fish. Another part of it is they tend to do more simple bone building activities as well like walking.

    If you have had undiagnosed thyroid issues you are more likely to have been staying inside due to fatigue which would decrease the amount of vitamin D your skin would make from the sun and the simple bone building activities you done. This would in turn increase your fatigue.

    In regards to the NDT like with the levo it is experimental and dosage varies from person to person what works.

    This is why many here realise that doctors talk sh*t when prescribing and should be treating you on the symptoms, obviously they need to keep an eye out for obvious overdose but shouldn't be making things up e.g heart rate. (You will have a better record of your heart rate than any doctor would and blood pressure as you can monitor it more easily. ) Lot of things they say happen to people tend to come from one or two case studies.

    Case studies are simply looking at one or a few people who had adverse or good effects from a particular treatment and aren't scientific due to limited data. (This is why it is important that everyone in the UK fills in a yellow card when they have issues with a medicine or supplement, whether prescribed or not. )

    Finally I saw your BH results and you need to get your B12 up. You want it at the top of the range not the middle. I don't know if you have issues with absorbing B12 as not seen previous blood results so you need to use a sublingual supplement. A B12 not high enough in its own and a sub-optimal vitamin D level on its own will make you feel tired.

    BTW Edit your BH post to add your last vitamin D results and any supplement regime you are on especially for B and D vits.

  • What I'm unclear about is whether the endo insisted you drop to 75mcg or you managed to convince them to keep you st 100mcg? If the latter, then why did you decide to use NDT if you were ok on 100? Everyone is different and just because some people feel better on NDT or t3 doesn't mean you will. if I were OK on a Levo dose I wouldn't mess with it, until I needed to, you can always buy extra Levo cheaply. I was ok on Levo for ten years before it changed.

    On the other hand as tissue takes up meds one can find an increasing need. You need to increase very slowly, by a quarter of a tab at a time and hold each change for roughly two weeks to allow your body to absorb the med. monitor your BP temp and HR to give you additional info.

  • Thanks for your response Sulamay. Endo insisted on reducing dose and I asked him to give me evidence that a suppressed TSH causes bone problems and atrial fibrillation. Since he couldn't he agreed I could stay on higher dose. In February I started having more severe eye problems - severe dry eye, grittiness, weeping and then my eyes started bulging and I started having some fluid retention - this is why I decided to try NDT. My eye problems are mostly resolved and the bulging has gone, so I think I was right to try NT.

  • I use my Temp to trim my dose. I put 1grain of NDT in a 1.5L drink bottle. If my Temp is under 36degC I take 1- 2 swigs an hour. If I start approaching 37 I stop for an hour or two. Ive just come back from 2hours sailing in wet 10-15deg C wind chill environment. I feel great no chill at all, in the past (prior to administering NDT as above) I would be shivering so bad I could not talk.

    At night I have 3-4 swigs about 11pm and then same at 3am. I end up consuming between 1 and 1.5 grains per day depending on what I am doing.

    I also had the dry eyes with shooting pains when on 150umg of Thyroxin (and a host of other issues clearly documented on the flimsy supplied with the drug, but for some reason the text is too small for the docs to read).

    I've given up worrying too much about my blood tests. My last one on NDT but prior to my Temp technic I had a TSH of 6. My doc wants me closer to be 1 but is prepared to compromise. I have to laugh about how diabetics self admin 5-6 blood tests per day and poor old hashies have to make do with a blood test every 3 months. I know my NDT needs very by .5 grain day to day. Yet Endo's and Doc's try an shove fixed amounts T4 into our bodies. All it results in is drug pooling, reverse T3, hypertension and host of other bad side effects.

    I just figure if you want to be on a T3 containing supplement (NDT, Armour, Porcine) you need to manage it closely . If you can tolerate T4 (Throxin, Leno, etc) you can be switch of the brain . You hear of people taking it for 15-20 years, but I became completely intolerant to Thryoxin after 3 years and my Doc pushing it up to try and get a low TSH's.

    Any way hope you feel better



  • Hi James, Thanks for your reply. I've not heard of administering NDT in that way before but if it works for you why not? I've taken 2 grains today and have had no tiredness at all, I might try 1.1/2 grains and 2 grains on alternate days. Don't want the overmedication side effects to come back.

    Regards. Rita

  • TSH can become suppressed no matter what you are taking. Even levo can suppress TSH.

  • Yes, I know that, it was suppressed on Levo and all the doctors were throwing fits about it, but it's even lower on NDT so I'm expecting a fight when I tell them I'm on NDT and it's gone lower!!! Rita

  • You don't have to follow doctors 'ORDERS' doctors are advisors and you don't have to tell them a thing!

  • I know, I seem to have been fighting doctors all my life. They wanted to give me a total hysterectomy when I had fibroids and I had to insist on preservation of ovaries and cervix. They said it's easier for them to do a total. Told him he doesn't have to live with the consequences!!! Same with my profoundly deaf family. I'm their spokesperson and have fought rubbish doctors for them all my life. I'm sick and tired of it!!! They think we should all capitulate - wish they could experience what we're experiencing, it would be a different matter then!! I've even had 1 doctor tell me that her husband is hypo and that she knows how to treat it, when I challenged her on the TSH range. Then a week later, she wrote on a post it, the TSH range that I had told her the week before!!! They know a little bit about a lot of things, but not much about anything!! They certainly don't like being challenged or for you to take charge of your health!

    Sorry for the rant, just really cheesed off with ineffective doctors.

  • i can only give you my experience. I was on 100mcg of synthroid t4 and was slightly undermedicated, could have increased just a little big bec tsh rose to 2.2 and i feel best on t4 with tsh betw 1-2. and anything over that i get symptoms....

    i tried thiroyd and i also went from one grain to 2 grains....and then went hyper also with fast heart rate etc........i split my dose am and pm.....i got frustrated and went back to t4. But my personal experience was i should have stayed at 1.5 grains total a day for 8-10 weeks and testing....since it takes a while for body to level out and get assimulated to dosage increases.......i was impatient and increase every 2-3 weeks like some... but that doesnt work for me....and my advice would be that your should be on one to 1.5 grains a day......if 100mcg of t4 made you hyper.....and pushed your tsh that low....i would have lowered you to 88mcg of t4 , not 75mcg but that is just my personal experience and and i also am subclinical and i had someone tell me that if you are estrogen dominant that it can make you subclinical but taking meds makes your thyroid dependent and dr should have started me on progesterone first to see if it made a difference first and i was also lacking b12, .vit d3, etc which all can effect thyroid function if not optimal.......interesting.....

  • Hi Jacrjacr,

    Thank you for your comments. It's just so confusing. I took 2 grains today and I feel great!! I think I'll see how I go for the next week or so and if I start to become hyper, will reduce down to 1.5 grains and then increase in quarter grains until I'm stable. Going to research B12 supplementation as it looks as though I'm low and might be affecting things.

  • Hi Rita-D

    I've been on 125mg of Levo for years with a TSH of 0.05. The test results always come back as 'possibly over-medicated' but thankfully my gp listens (to some degree) to how I say I feel. One upside is that, because my TSH is outside the 'range' they test my T3, which has actually been falling as my T4 has gone up. I did suggest to my gp that maybe I had a conversion problem but I just got a grunt! My T3 is still 'within range', although right at the bottom, so he won't do anything.

    About 3 months, after I'd had a B12 test, ago I decided to take matters into my own hands. My B12 was 284 (190-900) and the gp reluctantly agreed to give me B12 but it was cyanocobalamin (you can read about the different types of B12 on here) and it was only 50mcg(not mg). I think it's very important to only change one thing at a time when you're trying meds and I really wanted to come off Levo and try NDT although I knew I'd have to fund it myself. I ordered some methylcobalamin B12 - 5000mcg, sublingual, and have been taking that for 3 months. I feel so much better I can't believe it. At the last blood test (he had to test the B12 again as he'd prescribed it) my B12 was 1600! I shall continue with B12 but the 1000mcg. I didn't see the doc, I just asked for a print out of my results as usual, so he hasn't talked about it. He probably thinks the 50mcg has done the trick haha!!

    Now I've moved on to NDT. I ordered some from Thailand as the American ones are too expensive for me. I have to think that this expense will be for life and I'm retired. A bottle of 1000 was about £35/40 I think and at 1 or 2 per day I think that's pretty good.

    So far I've only been taking them for 2 days so can't comment on the effect but my temperature is about 35.5 and my pulse in the morning is about 50 so something needs to speed up a bit I think :)

    Take it slowly and give each change a chance to work so you can monitor what works for you and what doesn't.

    Good luck in your journey to health xx

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