Been taken off of T3

Hi All,

Its not been a very good start to the year for me and today it got even worse.

I went to see my gyna regarding my ovarian cyst last week and, after being told I need an operation to remove the cyst and the overy, I owned up to my heart beat problem. She told me to get back to my GP's straight away and get it "sorted out" and that my op would probably be in about 18 weeks.

Got a letter Saturday for surgery on 4th March (4 weeks) so booked an appt with my GP this morning for her advice as, even though the palps/skipping beats are not as bad as before I stopped taking sweeteners, they are still there.

She informed me that she had had a letter from the hosp asking for details of my conditions (which I think my GP called Paroxysmal artial tachycardia) and the said that we needed to talk about beater blockers and warfrin as "50% of people with this condition have a stroke or heart attack within the first year" and having lost my brother last week to a massive heart attack this information has frightened the life out of me (not an apt turn of phrase but couldn't think of another one).

She listened to my heart, which two minutes before was missing beats all over the place, but which she found to be "nice and steady" and said to eliminate T3 being the cause and to have half a chance of the surgery in a months time I need to stop the T3 straight away and to just take 75mcg's of T4 (so I have gone from 20mcg's T3 plus 100mcg's T4 to just 75mcg's T4 which seems like an awful lot to drop to me) She also admitted to me that it could just as well be the T4 that was causing it, and I must admit that having not taken my 10mcg's at bedtime T3 last night (I was going to try a reduction of my T3 anyway) and only 5mcg's this morning the palps do seem to be worse so it could just as likely be the T4. I know some on here will say that palps are caused by being undermedicated but with my last TSH levels at <0.05 I do actually think I was overmedicated hence the drop of T4 from 100mcg's down to 50mcg's but keeping my T3 at 20mcg's.

I then told her that I thought the Hosp had brought my surgery forward due to my symptoms getting worse and that I got the feeling that they were thinking that my overy was twisting which, if it did twist severely it would still result with me being operated on which she agreed with. She also agreed that after writing back to the hosp a letter canceling my surgery could, more than likely, be on the way.

I just cant believe that this has come on top of my brother dying the way he did and she was very understanding that I was now very keen to get to the bottom of this heart beat thing. I just feel like sitting here and crying I'm so frightened and upset with it all.

This awful illness fools you into thinking that you have it figured out only for it to, months later, throw it all back in your face so you end up back at square one again.

Moggie x

18 Replies

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  • This is an extract from Dr Lowe but cannot give you the link. It is for your information.

    Multiple Ovarian Cysts as

    a Major Symptom of Hypothyroidism

    The case I describe below is of importance to women with polycystic ovaries. If

    they have evidence, such as a high TSH, that conventional clinicians accept as evidence

    of hypothyroidism, they may fair well. But the TSH is not a valid gauge of a woman's

    tissue thyroid status. Because of this, she may fair best by adopting self-directed

    care. At any rate, for women with ovarian cysts, this case is one of extreme importance.

    In 2008, doctors at the gynecology department in Gunma, Japan reported the case

    of a 21-year-old women with primary hypothyroidism. Her doctor referred her to the

    gynecology department because she had abdominal pain and her abdomen was distended

    up to the level of her navel.

    At the gynecology clinic she underwent an abdominal ultrasound and CT scan. These

    imaging procedures showed multiple cysts on both her right and her left ovary.

    The woman's cholesterol level and liver function were increased. She also had a

    high level of the muscle enzyme (creatine phosphokinase) that's often high in hypothyroidism.

    Blood testing also showed that the woman had primary hypothyroidism from autoimmune

    thyroiditis.

    It is noteworthy that the young woman's ovarian cysts completely disappeared soon

    after she began thyroid hormone therapy. Other researchers have reported girls with

    primary hypothyroidism whose main health problems were ovarian cysts or precocious

    puberty. But this appears to be the first case in which a young adult female had

    ovarian cysts that resulted from autoimmune-induced hypothyroidism.

    The researchers cautioned clinicians: "To avoid inadvertent surgery to remove an

    ovarian tumor, it is essential that a patient with multiple ovarian cysts and hypothyroidism

    be properly managed, as the simple replacement of a thyroid hormone could resolve

    the ovarian cysts."[1]

    Reference:

    1. Kubota, K., Itho, M., Kishi, H., et al.: Primary hypothyroidism presenting as

    multiple ovarian cysts in an adult woman: a case report. Gynecol. Endocrinol.,

    24(10):586-589, 2008.

    This is re T3:-

    web.archive.org/web/2010122...

  • Thanks for that Shaws - I did actually come across this article when I was doing my research on links between ovarian cyst and underactive thyroid but you try getting a gyna in Ipswich to admit that there is even the slightest possibility that they two illness are linked. When I mentioned this I got told that to answer my questions I would need to go and see an endo because as far as this consultant was concerned there was no link. Sometimes I get so sick of hitting my head up against a brick wall with these so called specialists who, whilst ignoring your questions and suggestions, can also make you feel about an inch high.

    Moggie x

  • They do not seem to understand that hypothyroidism affects every single cell in your body, particularly the brain, so it stands to reason that a problem can appear anywhere in your body.

    This is from Dr Lowe

    web.archive.org/web/2010122...

  • Hi Moggie

    I was sorry to read about your brother and now the confusion with your meds and your own health. This is a very complex disease but there is some information out there from a guy called Ray Peat. He is fully qualified and suffers from hypo himself and has lots of info about the heart and the ovaries. There are lots of articles on his site and he blames alot of our ill health on the food we eat and that we dont eat enough of it! He advocates thyroid,good food and progesterone for good health. All his articles are free.

    Some of the articles are very long and complex to read but there are other bloggers who condense it and explain them.

    Hope all goes well.

    Jennifer

  • Hi Jen,

    Thanks for pointing out this mans name to me, I must admit its one I haven't heard of. I have recently changed my diet radically and have been virutually wheat free for about a month and have cut down on my sugar intake to almost nil.

    Will certainly be doing a google search on this man and reading what he has to say but its so disheartening to then be patronised by our medical profession for thinking outside the box.

    Thanks again

    Moggie x

  • Hi Jen,

    Just googled this man but can't seem to find the articles or other bloggers you mention, have you got a link you could post.

    Thanks

    Moggie x

  • raypeat.com/

    Hi

    this is the link and all his articles are on the left handside of the page. The other bloggers are Danny Roddy and Matt Stone, big followers of paleo diets but are now ' peatarians' after reading his articles. Ray Peat is a also a big fan of the late Broda Barnes who dedicated his life to researching hypothyroidism.

  • Thanks for that Jen.

    Moggie x

  • Oh Moggie, i am so sorry to hear this news on top of your recent bereavement.I can't offer you any useful advice, but just know that I really hope you can sort out your medication. It does seem like a very big drop in dosage for you.. And yes-with this illness you can think it's all under control and then it all goes all over the place again. Hang on in there!!! Jan x

  • Moggie, so sorry for you loss.

    I'm afraid I can't help with the gyny bit - although I do believe that low thyroid is responsible for a lot of our female ills, but I just wanted to say that you can't conclude that you are over-medicated just by the TSH.

    The TSH is a rough guide at best, but once you are on thyroid hormone replacement the feedback link is broken and dosing by TSH levels is wholly inappropriate.

    What you need are your thyroid hormone levels - especially the T3. That will give you a more accurate guide to your thyroid hormone status. But most important of all, is how you feel. And the things that are going wrong in your body. And from all you've said I would be inclined to say you were under-treated, rather than over-treated.

    So I'm not sure that this drop in your dosage - especially the illimination of the T3 - is going to have the desired effects. Such a huge drop will inevitably stress your body. Drops in dosage, just like increases, should be done slowly and by small amounts.

    I don't know if this is of any help to you, but I just had to say it.

    Lots of luck, Grey x

  • Hi Grey,

    I KNOW I was overmedicated as the TSH of below 0.05 (in other words undetectable) was after I had STOPPED the T3 for two days before the bloods. If I had kept taking my T3 as normal I dont know what my TSH would have looked like. She also did a FT3 and FT4 test which where both middle range but again if I hadn't stopped my T3 I believe my FT3 would have been sky high. So I agreed with her about dropping my T4 down by 50mcg's but had to battle to keep my T3.

    The appt yesterday was the first time my GP had actually stated that it could be the T4 that was causing the problem as I asked her outright "so you think its the T3 thats causing this" and to my amazement, as I was expecting a yes, she said "not necessarily, it could just a easily be the T4".

    If the palps/skipping beats get any worse I will be straight back to her for a re-think but will do everything I can to avoid beater blokers and warfarin. I will more than likely be asking to try T3 only and see how I go from there.

    Thanks for your comments and I know my body wont like the drop in meds but this was just to get my heart to behave itself for the op as I have been warned that the anesthetist will not put me under whilst this is going on. Once the op is over I wil be straight back to her asking for a trial of T3 only as I cannot do my job with the awful brain fog I was suffering when on T4 only.

    Moggie x

  • Aah Moggie, have not been popping in on a regular basis, this latest development must be so very hard to take on board & deal with following the sad loss of your brother, my heart goes out to you, Moggie I do so hope that your health issues can be sorted, not sure that such a drastic reduction in med's will help or hinder you, (think your doc had a knee jerk reaction there) but I'm sure that your too savvy to let yourself go spiralling into Hypo symptoms without letting your Doc know...:)

    Your Doc ( & yourself) might be right in not ruling out the T4 as the culprit ! it was definitely the case with me the T3 has now stopped my palps completely( gradually upping my dose of T3). But I know we are all different....keep the faith Moggie I'm sure that you can & will feel better & master this bl**dy awful condition....

    Hugs & best Wishes

    Loopy

  • hey Moggie, don't know enough about t3 t4 stuff to give u any advice. But i'm really sorry about your brother. I will be remembering you in my prayers, keep strong, I know its easier said than done but try and keep positive, it will be good for you in the long run, don't think too much or you will just make yourself ill, take care xx

  • Hi Moggie,

    So sorry to hear about your brother and what is happening to you -sounds really tough. A word of caution re thyroid tests when on a combination treatment of T4/T3 or t3 on it's own -blood tests are completely unreliable and really not helpful at all. I am on a natural dessicated thyroid (Erfa) on the NHS and my TSH has for years now been 0.01 so please don't panic unless you have other symptoms of over prescribing. I don't know if you have read Paul Robinson's book called 'Living with T3 only' it is really helpful not only for pure t3 users but those on a combined method. I do not understand why your GP has dropped your meds so drastically -it is a huge drop! In your position i would hook myself up with a good specialist in hypothyroidism and as k your GP to refer you. Thyroid Uk have a list of docs that are good. I pay to see mine privately and only got well when I did so....there are a few on the NHS but not many sadly...

    Really hope you feel better soon. Hugs x

  • Thanks for you kind words but as I answered to greygoose I do think I was over medicated on my T3/T4 combo plus my heart certainly does not like one or the other. Just want to get my brothers funeral (which is tomorrow) and this op out of the way before I start making waves as my head, at the moment, isnt able to process the last week or so's events.

    Dont worry I will be back fighting my corner as soon as I feel able to and I do know there is a good endo about 6 miles away from me who I will ask to see if my GP is still unable to help - I must add that she is a very good GP actually and has been behind me all the way but as she said yesterday putting this op in the mix is muddying the waters.

    Thanks again

    Moggie x

  • If you can afford it, any way you can, see a private doctor. It is your life these 'doctors' are messing about with. Paul Robinson's book could be very helpful.

  • why is the doctor dropping your thyroid meds so much? Suggests that she hasn't a clue what she's doing - dangerous. Does she realise that 20ug T3 is equivalent to 100ug T4 (ask her as she may not!)? If you drop to just 75ug T4 you will probably go very hypothyroid and feel crap. And dropping 20ug T3 in 1 go might be bad too. I went from 20ug to 10 ug T3 recently (with a 50ug increase in T4) and was in bed for a week and still not right 2 weeks later.

    I also get palpitations and it doesn't seem to matter what dose or combination of T3/T4 I am on I still get them. So it may make no difference changing your meds.

    My personal opinion is that the best treatment is probably 5-10ug T3 with enough T4 to maintain a TSH around 0.5. I'm still in the process of experimenting though.

  • I have been "experimenting" with doses since last April but to no avail, I've up'd and reduced my T3 and then Up'd and reduced my T4 but nothing made any difference to the palps, I've asked countless questions on here and tried to work through people's suggestions but I am still convinced that this is all down to the fillers the drug companies are putting in the medication so no matter how much you juggle your doses the problem will remain. My "experimenting" has led me to nothing but trouble and I would suggest to anyone on here who is struggling with an irregular heat beat to get it check out sooner rather than later - I left it until later and now realise how stupid I was.

    Yes my GP knows that 20mcg's T3 is equivalent to 100mcg's T4 but she is going on the basis that I am overmedicated by quite a lot and to get my levels down in four weeks (when I am supposed to be having my op) she has had to reduced them by quite a lot. I do have every faith in my GP as she will listen to what I want and need and act accordingly, she is not one of those who talks down to you or refuses to help when you go to her feeling really ill regarding thyroid issues. She, like me, is concentrating on getting my palps sorted out so I can have this op in a months time before I end up with a twisted ovary and have to have an emergency proceedure.

    Once the op is out of the way I will then go back to her and we will work it out together. If I feel I need to go back on T3 she will, most probably, be willing for me to do so but I will need to think long and hard about that one. I know I am very lucky to have a GP like this and have learnt to trust her judgement (which wasn't easy for me to do), although I'm not saying I would blindly follow everything she sugggested (we have had some very heated discussions in our time). Yes T3 has its place in treating thyroid conditions but I now no longer think it is the be all and end all.

    Hope you get your palps sorted out soon but please go and get your GP's opinion on this.

    Moggie x

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