I have posted before. Still in a bad way. I am now 16 months into menopause I state this because everything is going wrong. Nothing I take now seems to work. I have been on all t3. I have done t3/t4. I am now back on 175 Levothyroxine.. after go told me she would no longer consider treating me I'd I tried NDT. Endo useless unless you have diabetes. Now borderline.lol. tried Greek t3 and it made me froth at the mouth. Seem to have become intolerant to everything. I take b12 .vitamin d. And iron and b vitamins and a multivitamin. I am exhausted. I have terrible lower leg problems and now bad hips I do nothing I struggle to eat.

tea makes me sick. I have terrible diarrhoea and I am incontinent as I feel like I have no feelings. I can't seem to get a good brain temperature. Can't get over 36.4. My armpit temps have been as low as 34.4 and then wake up with bruises over me legs. And have veins coming up at top of ankles like I have a deep vein thrombosis tops of ankles swollen and skin is sore. Even hair follicles are sore.

my one question is that we often read new things on this forum which sometimes are conflicted so making it harder to help ourselves s. I did not know that we take t4 at night when and who decided this was a nightime medication. Especially when it tell you on the instructions to take in morning.

I did notknow that t3 was a am thing.

when I was in t3 only I took it allin the morning but this was Mexican stuff and never had any side effects but all my problems started when it was stopped being available. NHS t3 also seemed to give me problems but maybe this was the Levothyroxine. I have hate adrenal problems and was on me from but stopped this . Then had adrenal problems again and hospital are testing them. But I did private Genova test and it said they were ok not that high but ok.

now I have high heart rate in back which I thinks is my adrenal struggling again.

I know I have to start to selfmedicate and do this on my own. but dont know where to start now. Shall i try NDT.

also another question when you look up liothyronine on the NHS website they talk about how much maximum a day you should have and their maximum is 60mgs. But when I was on 75mgs of t3 I also needed to top it up with 50mg of levothryoxine.

I know what your going to say why gotback but simply put it all went wrong when I ran out of mexican t3.

with the menopause and heart rate isn't it oestrogen that brings theheart down. My gp told me that it was eostrogen that regulated our temp.

but when I take eostrogen it makes my temp go down even more and makes my legs cold.  She then said I had a circulation problem. But never referred me to anyone and ignored it.

don't know who to believe anymore.

this gp is one of main partners but only work a two days a week unfortunately my family are under her I have tried to change to another gp that workslonger than a three day week but it rare at my practice. So any records and bloods take ages to be acted upon and last bloods were ignored unroll I went in and demanded them. To find out I was deficient in iron .b12 and vitamin d.

Any advice appreciated sorry for long post.

28 Replies

  • hiJcT1. 

    Sorry to hear about your troubles am yes can imagine how you must be feeling about the various conditions. 

    Can't  help on all, but have had some of things, still do,,that you mention. It wil need some of your own research also so you can se pictures to see if it looks same as yours. I use Wikipedia a lot, often just putting condition symptom in search box. 

    1st and foremost, in my own opinion and I am not medically qualified, but have been there done that with several of the symptoms you describe. 

    I think you are taking far too many different medications, depending how many you take at same and even if you take them correctly!,

     Some of them are probably conflicting with different ones. I stopped taking all meds except my Levothyroxine. If you rush to the Drmor Medicine chest every time another symptom or condition appears you are possibly not giving your own body and it's defence system a chance, it fighting all things on all fronts. Your liver certainly won't be happy and there is a possibility of it becoming toxic. Whatever is in your liver enters the bloodstream and it is carried round the body to all the organs and glands of the body - more importantly to the Brain. Already you say potentially you have a circulation problem, and the bloodstream carries oxygen to the brain. 

    Low body temperature, do you feel cold in yourself, you do mention cold feet.   Feeling the cold is a symptom of Hypothyroidism.

    You say you have bruising on your legs - I know it looks looks horrible, it's what I had on my left leg especially but nearly all gone now, so it could be you have  purpura which is connected with the circulatory system. I know I have problem with my red and white blood cells, that's not to say you do at the moment. Have you ever had a full blood count test?  It's something you should ask to see a copy of if you have. 

    Again you mention diarrhoea, think about all those tablets you body may not need or want. Apples or the juice is good for diarrhoea I drink some orange juice also for  Vit C. Lidl sell a good brand of both and my husband had a glass of the Apple every morning. I used to drink Cranberry juice, suited me better at the time. Now I can't get to a lidl. 

    I suggest you start examining online, also you can out check out your meds as to whether they conflict or not. I don't remember name of UK website. I used drugs.com. 

    I suggest posting your Thyroid blood test results on here and the admins will be able to advise you on those. 

    I have concentrated on researching my whole health history for myself, and there's quite a mixture of things involved, sounds yours is similar, but I repeat I would start thinking about what ends up in your liver long before you are diagnosed with cirrhosis, as I was. I've altered some of what I eat and drink over the last few months as well taking a couple of specific herbal remedies, I can eat gluten with no problems and feel much better in myself than I was back then before I started  my new regime. It worked for me relative to the conditions I have. I now only have a couple of specific symptoms and know what causes those, for which there is nothing I can do and I refuse to take anti-depressants again, (not prescribed for depression and which I don't have) which my Dr wants to prescribe, so I say no thank you, I'll live without them, then they are not harming my physical health via the bloodstream and endocrine system! 

    You just sound as though you are heading down the same road I did, but I wasn't aware of that at the time, I am now though through my research.

    A healthy nutritious diet is also necessary, it will look after your endocrine system and ultimately helps how you 'feel' health wise Good luck with your searches and I hope you feel better soon.

  • Thanks for reply only taking thyroid meds and the vitamins I am deficient in. Gluten free for years. What I need is a good gp that will give me more than a quick 10 minute chat.


  • Hi KJc, still sounds like there could be a problem involved with your liver and blood, especially with the 'bruising'. 

    How long have you been back on Levo only. I think admins may suggest you are not converting T4 to T3. Were you better or at your best with NDT. When changing makes it may take several weeks for things to settle down again. 

    As said before if you have them and post your test results, admins can comment on them for you.

    TSH, Free T3, Free T4, Ferritin, Folate, B12. Perhaps it's possible you now have Hashimoto's, if you are Hypo or Graves if you are Hyper. Which are you?  

    I know it's difficult with your Dr, have you ever had a Thyroid scan. I had my 1st one last year, 15 yrs after being diagnosed only by a blood test as being Hypo. If your Thyroid is shot, that's more info for your next Dr to work with. 

  • Thanks for reply.I have no thyroid gland left. After rai for graves disease. I went back on thyroid to prove a point to the doctors that it doesn't work for me. I have not tried net yet but I was going to give it a go. I have always had low blood pressure..


  • How deficient in b12 are you?  This could be the cause of many of your problems especially incontinence with no feeling.....think you should post up your results.  You don't have to take levo at night some people find it helps better, as do I.  Being deficient in b12 vit d and iorn will not help and it could be you are not converting enough.  I remember when I was under medicated my hair follicles were sore too, hurt to have my hair cut!  Sorry im not much help.....try a different doc too even in the same surgery. Does sound sound like you are, firstly, under medicated but posting your results can help with that. X

  • Thanks going back to see a doctor on Monday that wanted me to be on t3. Even though she told me not to tell anyone else as she would get into trouble. These are the stupid obstacles we have to face.

  • Without recent thyroid test results with ranges it is difficult to comment.  B12 and VitD are not instant cures and need to be taken for some time for levels to improve.

    B12 needs to be taken with a GOOD B Complex - preferrably containing methylfolate rather than Folic Acid.  Also VitD should be taken with a good fat as it is fat soluble .....

    I think you have been swopping treatments possibly too regularly which can be an issue with hormones.

    Do you have any gut/absorption issues ?  I see you are GF - so perhaps that has helped.  Again it takes time.  Do you have Hashimotos ?

  • I agree with Marz. We need to see results for






    vit D

    vit B12



    plus exactly what you're taking and how much, and how long you've been taking it.

    Just the act of taking something is not necessarily going to help. It's taking the right dose and for long enough that makes it work. As you've discovered, your doctor is not going to help, she doesn't know enough. So, you've got to take a deep breath and start going about this methodically. And the best place to start is with recent, complete labs.

    One step at a time - baby steps - and you will get there in the end. :) 

  • All these test I will have to do private ly with blue line my doctors will not do these tests.

    I am under an endo sheonly sees me once a year and I have to beg for the tests. It's not a great NHS service in the south west.

  • But they must have done some tests, no? Otherwise, how were you diagnosed? And if you were on T3 only, they must have tested the FT3, no?

    It's not a great NHS service anywhere where thyroid is concerned, which is why we have to learn for ourselves, and sometimes treat ourselves. We just cannot rely on doctors to know enough about it to make us well.

    You said 'any advice appreciated'. This is the advice given to anybody and everybody : get copies of your results, post them on here and let us see exactly what has been tested and what the results were.

    A lot of us aren't well on Levo only. I was very, very ill. Now I'm on T3 only, but I had to do it myself. It's tragic that the Mexican T3 disappeared, but there are plenty of other forms of T3 out there, we just have to try them until we find one that suits. Absolutely no point in sticking with Levo if it makes you worse than you were before. Start another post asking for people to PM you links to where you can buy T3. You'll find there are lots of sources.

  • Thankyou for your support and your post. I was on 175 levo for several years sooooo ill . Doctors would not listen to me. Pure chance met an associate of Dr Lowe and Gina handyman in southwest. She worked from home. My adrenal were through the floor. We tried combo of t3/t4 and I still felt unwell. Then tried all t3 75mgs was well for 3 years untill mexican t3 ran out. That was 2015 in December. My mentor left for states and retired. So went to a gp and teased up and all he'll broke loose. Sent to endo who gave me t3/t4 combo all going on tsh results. If you give me meds that follow tsh I am unwell. Low temps it . Low everything. You know you've been there. I have to do this myself. I have posted results here before and been told I'm on right dose of t3/t4 even with adrenal support. My body just does not like levo. I have been sourcing different t3s just need to get the right one. I have found some cytomel from states it's expensive but is last resort. Life is passing me by in a blur. Kids getting older and dogs getting older and I am not there with them. Feel like a passenger watching from the outside of this makes sense.

  • That makes perfect sense. A lot of people say that being hypo makes them feel as if they are just not there. And I have felt that myself at various stages of my life.

    You've posted rather a lot of questions on here, and I just Don't have the time to trawl through them to find the results, I'm afraid. I Don't know who told you you were on the right dose, but if you still feel ill, then you obviously weren't on the right dose! Labs are just a guide, not an absolute.

    I Don't think many people do get well if the doctor just goes by the TSH. It's just complete ignorance on the part of the doctor. Especially if you're taking T3, because that is bound to suppress your TSH at some point. That's one of the reasons I self-treat, to avoid the regular battle with a GP that knows less than I do and wants to reduce my dose because of the low TSH. In fact, in my early, ignorant days, one doctor wouldn't let my TSH drop below 9.5, because he didn't want me 'tipping over' into hyper! Ignorant so-and-so. But he came to a sticky end, and serves him right!

    But, I digress. If you know T4 makes you ill, then stop taking it. Have you not found any T3 amongst those that you've trialed that suit you?

  • Heres the thing I have to go to the doctors have already cancelled two appointment this week because I can't wake up before 11.00am no matter what I try. When I am up I just want to go back to bed my eyes won't stay awake. I m too tired to shower and go to the doctors.

    My main problems are chronic stomach ache and incredible back pain. Can't stand up straight hips are in agony. Have had blood in poo and had abig blood clot in it. So a bit scared but not enough energy to go. I seem to have some kind of cholitis going on. But on my lower right leg I have a swelling and it looks like it might be an ulcer (pyoderma gangrenosum) looked it up on net. Funny thing though it's treated with pregnesolone. Which is similar to the medrol I was taking to support my a drenals. But was told to come off it by a gp but have been so unwell wihout it. So I took 2mgs and the inflamation started to go down. I was never on a large dose of medrol I only ever took 4mgs a day. Should never have come off it. Thanks for responding to me. Regards t3 the only one I know I will be ok on is the America canadia one nongeneric t3 but it is very expensive. But is has no fillers so I'm just going to have to get it.

  • It must have some fillers, or you couldn't make it into a tablet!

    OK, first off, you say you take iron and b vitamins and a multivitamin…

    a)Are you taking enough iron? What was your level and how much are you taking? Are you taking vit C with it to increase absorption? Have you had it tested recently, what was the result?

    b)By B vitamins, I take it you mean a B complex. But have you had your B12 and folate tested? What were the results? It could be that you just aren’t getting enough B12 out of the B complex and need to supplement it seperately.

    c)A multivitamin just isn’t going to help at all, for various reasons. But mainly because it contains things that should be taken seperately because they cancel each other out.

    d)Have you had your vit D tested?

    e)Have you tried taking magnesium? Zinc? Selenium? Anything else?

    f)Do you consume any form of soy?

    And please don’t tell me to look in your past post for the answers because I just don’t have the time.

    You do not have to take T4 at night and T3 in the morning. You can take both of them whenever you like, whatever suits you best. As long as you take on an empty stomach, an hour before eating or 2 -3 hours after eating. You do what’s best for you.

    And it doesn’t matter what they say on the packet. They also say to eat half an hour after taking the tablet, which is also wrong.

    You have adrenal problems, so why did you stop the Medrol? Can you not go back onto the Medrol? That could solve a lot of your problems.

    You tried NHS T3, but it didn’t agree with you. However, you were taking it with T4, which doesn’t agree with you. It could have been that if you’d stopped the T4 and taken T3 only, it might have been ok for you.

    If you’re going to start self-medicating, the first thing to do is get everything tested – I gave you a list of things you should test.

    With hormones, you start low and increase slowly, until you get rid of all your symptoms. BUT all nutrients need to be optimal to achieve this.

    You could try NDT, but that contains T4, so if T4 is your problem – as it was mine – then that’s not going to be any better for you. However, you won’t know until you try.

    Ignore the NHS website and their ideas of how much T3 people should take. They don’t really know any more about thyroid than the doctors do. You need what you need, and that’s an end of it. If you need 75, take 75. I do. You know your body, they don’t.

    Why did you need to top it up with Levo if Levo doesn’t agree with you?

    I’m afraid I know nothing about estrogen. But it’s not really a thing to experiment with. Could you not see a gynecologist? However, I think it’s thyroid hormone that regulates temperature, not estrogen. That’s why hypos are cold. GPs know nothing about hormones. Have you never seen an endo?

    Doctors that only work 2/3 days a week? What kind of a practice is that! No wonder you have problems seeing one. And, I suppose, that means that they would not be willing to come out to see you. Can you not change practices?

    Or, how about going to A&E about the blood in the stool. That’s serious! I do understand your problems getting up and going out. I don’t do mornings, myself. It’s very hard most mornings. But with A&E, you can go when you like.

    I have noticed that you rarely answer the questions people are asking you.

    I would like to stress here, that details are very important. One little detail can be the key to it all. So, please do answer questions, otherwise, it’s impossible to help. :)

  • I have been well just to let you know this. I was on all t3. 75mgs a day. I was well for over 3 years but my problems started when I ran out of mexican t3. It's as simple as that. Nothing else seems to agree with me. I have never been well on all levothyroxine . I get circulation problems and cCOPD symptoms. I know I need to post my results but it no good if I don't convert. I was on adrenal support also for years. Am still under hospital for adrenal.

    Levo what ever dosage I am on gives me heart palpitations. Ihave seen some cytomel on an American site I know it's expensive but I'm just going to have to get it.

  • Posting your results is the only way we could possibly begin to offer any advice or support. Nothing to do with you converting or not.

    So Mexican T3 it is then :-)

  • b12 problem comes to mind as others have suggested. 

  • you were taking progesterone bhrt cream with the estrogen right? i hope so....most women need progesterone bec they are estrogen dominant which means too little estrogen and progesterone but out of balance with estrogen.....sometimes just taking progesterone will clear that up....just make sure if you buy online that it says USP PROGESTERONE in ingredient or it is of no use.......some women need a tiny bit of estrogen and more common with skinny women.....I have read women raving when starting progesterone after 6 weeks they are better....hence it is also good for the thyroid....i personally only recommend bio identical creams on use mostly on the inner arms...creams bypass the liver and are safe......i tried going off mine and decided quickly i needed it........it is amazing the difference it makes...my dr prescribes mine but it is available online as well.....i use mine that is 40mg am and pm before bed.........

    i also take flaxseed oil gelcaps organic 2-3 times a day, black cohosh, and fish oil....b complex, E, q10  the water solutable kind that ends with ol instead of one,from vitacost.com and thyroid support from pure encapusulations that is awesome.....

    as for vitamins...it depends which type of each vitamin you are taking and how much....i take b12 meth form under the tongue so it aborbs better , i take d3 5000 daily, and a good grade multi since most vitamins in stores are the cheap form that your body cant absorb hence you have to buy the b12 in expensive vit stores or online which is cheaper.....and you do need recent blood test to see how much you need to take .....and higher normal results is what is best....not lower normal which makes most people feel awful...

    and the last thing is making sure you are not taking thyroid meds 4 hrs of vitamins hence some people say two or three but i always wait 4......and i avoid calcium and iron around thyroid meds....and dont eat for 30-60 minutes

    but like everyone said....a blood test can guide you what is off

    and if you are low in ferritin serum or low normal....harder to convert t4 to t3....

  • Thanks having These checked next week .

  • Why can't you get Mexican T3? It's available again now

  • Well I looked a couple of days ago and it wasn't.

    we're did you see itplease pm with details you may just save my life.

  • Someone posted on here a couple of weeks ago that Cytomel, Mexican T3 is back. I'll have to find the post but someone replied to them that it was available in Greece and somewhere else anyway. It was definitely the Mexican T3, I remember because not a lot of people even like it. I will have a good look and get back to you . Meanwhile you repost or ask one of the site administrators if they can find the post

  • At least one Mexican source was claiming Grossman Cynomel would be back on 14/05/2016 - but then posted that their own social services had bought every last tablet.

    Obviously we have no satisfactory way of checking this out. They did promise more would be on its way.

  • No, someone actually posted 'it's back' with more info but I can't find it. Wasn't long ago

  • Yes - the post said it was back, but further investigation found it wasn't quite back yet...

  • Ah okay thanks. It's just that whoever posted seemed quite certain so I wondered why poor kjc was still struggling

  • cynomel from Grossman is not available.

  • You need to post yr adrenal saliva results and ferritin with ranges. Unless both are optimum yr thyroid meds will not work properly.  See STTM website - all yr ducks in a row page + RT3 adrenals web page for lots of info.

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