Please can someone help????

Hello everyone,

I have been trying to take a quarter of a tablet of T3 a day - I did this for Four day but I had to stop because I was becoming Toxic but I have had no Thyroid Medication at all for five days now, and my waking pulse was 102 this morning, I have sharp pains through my chest & stomach and my breathing is laboured, I am sweating and I feel ready dreadful, my throat is sore & swollen, and my muslces are seizing up - please does anyone know what is happening? I really don't know what to do. The only Doc that can possibley help is booked up til the 25th Nov.

What is happening

30 Replies

  • If you have chest pains you need to go and see someone today to get it checked out. There is always a chance that it is not connected to your thyroid and chest pains should ALWAYS be investigated just in case, even if it is nothing to worry about.

    Have you taken your temperature? It may be that you have an infection. This can cause all the symptoms you describe including the quick pulse.

    I think you should see someone straight away, just to make sure. I know it is usually our thyroids that are causing the problem but sometimes it isn't. Recently I reduced my dose thinking that I was over-replaced but it turned out I had a virus followed by a sinus infection. So then I had to deal with being more hypo too :D Needless to say, I have learned my lesson - it's not always thyroid so it's a good idea to get things like this checked out to make sure.

    There is also the possibility that you have low iron which is making it very difficult for your body to cope with any amount of thyroid hormone. It is important to get this checked out - serum iron and ferritin, not just haemoglobin.

    I hope you feel better soon and the doctor you see on the 25th is able to help.

    Carolyn x

  • Helly Carolyn,

    Thank you for your reply, I am afraid that what I have listed is something I have been suffering with ever since I started Thyroid medication, those symptoms go away normally if I stop the Thyroid medication. If I go to the Doctor and they just turn round and say their is nothing wrong with me, i fear i would just burst in to tears in front of them - then that gives them the chance to label me as a depressive and send me out the door. I have really had enough now, whatever vitamins I take, including Iron doesn't make any different in the reaction to the medication. I just can't go on, the 25th of Nov is my last hope

  • :( I'm sorry, I don't know what to suggest. Are you getting these symptoms on T3 (liothyronine) or T4 (levothyroxine)? I know some people get similar symptoms on T4 but then are much better on T3. You state you are not even able to take T3 but I don't really know what to suggest. Maybe someone else will be able to suggest something after experiencing similar symptoms.

    When were you diagnosed? What were you initially prescribed and how did you get on with it? When did you switch to T3 and what were the changes.

    I'm a little confused. You mention your symptoms disappear when you stop your thyroid medication. Do you feel better or worse without the medication? Have you had your levels checked since stopping thyroid meds? I'm just wondering if you were diagnosed on the TSH test only and if there is something else that is going on. Perhaps your TSH was high because of another issue (pituitary maybe?) and, as a result, you actually have high levels of thyroid hormones. It's just a theory but it might be worth checking out. If you have your thyroid test results that might help.

    If you are not well and your doctor is insisting that all is well with your thyroid, he should really be doing his best to find out what is wrong. It may be thyroid related but it may be something else. He shouldn't just say 'you're fine' because you clearly aren't or you wouldn't be there!

    I hope you find the answer soon. Hopefully someone else might be able to share experiences that shed some light on what is going on.

    Carolyn x

  • Hello Carolyn,

    It has been nearly three years since they finally picked up on the underactive thyroid ( I had been having symptoms of this for proberly fifteen years before the TSH came up High) I was prescribed 25mg of Levothyroxine daily and for the first six weeks it really was fantastic - I felt better than I had ever felt in my life but then things started to go wrong, it was a gradual thing to start with, my old symptoms came back and then I lost my sense of smell & taste, blood tests came back fine - by this point I was taking six laxative sachets a day so that I could go to the loo - my Dr said that is just how it is for some people. I finally got an Increase to 50mg, this was terrible made things much worse, my throat swelled up, I couldn't swollow and was having difficulty breathing, That was when they picked up on my Mutlinodular goitre. I told my doctor that the increase was making things worse but he wouldn't listen and put the T4 upto 75mg - I only took that for a couple of days, i went back, by this point I barely had any energy, and struggled to walk into his room, I was struggling to breath, my temp had dropped to 34.2 - I was shaking with the cold (this was June 2012) I was pure white with big black circles under my eyes and was in terrible pain with my joints - then he put the T4 upto 100mg. That was when I went private - I really thought I was dieing, my pulse was 125bpm and i could bearly move ofo my bed, He done the ASI test which showed I had adrenal Fatigue, he said I may have trouble converting the T4. ever since I have been trying to get bits of T4 or T3 in and It won't go. I am much better off the medication than I am on it, But it does get to the stage where I really do have to have some. I am going round in circles and I am just so upset now simply because their doesn't seem to be an answer.

  • It does sound far more complicated than usual. Perhaps the adrenal fatigue is contributing. Another possibility is that you have another autoimmune disease along with they hypothyroidism that is contributing to your symptoms. Is there any way you could persuade a doctor to test for these?

    Another could be an allergy to some of the inactive ingredients in the thyroid tablets. It's just a thought.

    It must be horrid feeling like this with no idea what might be causing it. I hope you get to the bottom of it soon.

    Carolyn xxx

  • Hello Carolyn,

    Thank you for your help, I have just changed surgeries and have gone back to the one I used to be at, because this one Doctor was head & shoulders above any other Dr - thats why it was such a nightmare getting to see him because everyone wanted to see him, but I have an appointment on the 24th Nov - and I pray he helps, I really don't want to continue in this way - it's miserable, but you know that, being a sufferer x

  • Luckily, after many years, I am now recovering. I found T3 was the answer for me (along with B12 and iron) and I am starting to feel human again and I'm enjoying life. Hopefully the same will be true for you before too long.

    Take care and let us know how your appointment goes.

    Carolyn x

  • Hello Carolyn,

    Just wanted to update you on my appointment. It was like a dream come true. My new GP's knowledge amazed me, he agreed that the synachen test only shows up addisons diease, and asked why my adrenal problem hadn't been treated. He also said that T4 doesn't suit everyone and he has patients on T3. I asked him about the blood test - and his reply was "Blood tests are a guide, I treat the patient" He said he would start from scratch and i had a blood test - 14 different things from hormones to Pituitary Diease. The outcome now looks rosey in time. I put a post up to give people hope and to search for better GP's as they are out their and with whatever helpful information I learn I will happily pass it on. - I still can't believe it, the fact I have found someone to help has relieved some stress x

  • This rings bells with me on the Adrenal front.

    I hope your appt,. for 24th provides some answers. Self dosing with T3 is really the last step- when all else fails.

    Do they know about this move of yours?

  • Hi Tegz,

    I am not self dosing any longer, I am not taking any Thyroid medication at all, I can not put up with the problems it causes. Obviously this is not Ideal but I don't know what to do. I have read about the receptor uptake and what effects it, but I need tests for that. Did you have to have Aldosterone with your Adrenal Issues?

  • I 've only had the 9am Cortisol Check [which was over the 400 threshold.[privately done]

    I have learned since that my earlier work maybe indicated adrenal issues but that was not mentioned back then. I will have to wait to see a new Endo I picked from the T-uk 'best list' next month , I hope..

  • Hello Tegz,

    Are you still poorly then? Since joining I have only spoken to two people that have recovered. It doesn't make sense with how knowlegable all the people are about the condition but yet they are still very Ill.

  • Hi D, I would say 'in a holding pattern' at present.

    I'm not as ill as many on here and for that I thank my lucky stars. Still falling asleep on and off all day and awake at 4am for some years now. Mainly, it's the sense of lost years when I could be enjoying my free time. Just been to Dartmoor for a walking w/e which proves I can still hack it, but I pay later for some days catching up.

    Joint pain is just niggly but I hope to sort the whole thing out before long...

    Sadly ,with the NHS, knowledge doesn't equate with power- only money really talks.

    I'm not the sort to get nasty, as I feel I could sometimes, as I understand the medics' fix in their world of rules etc with endless caseloads + boxes to tick.

    The pay's not bad, though!

  • Hello Trev,

    I am sorry to hear you are still poorly. That is why I chose T3 because that is great for Joint Pain or apparently Vitamin B1 also helps. I admire you attitude towards the NHS, I do feel however that it is not so much the cost but the lack of understanding on how to treat us. I think it would cost much less if they made us better. On a brighter note it is a big day for me and I have my Docs appoinment - hopefully things will start picking up now - hurrah. Hope you enjoyed your w/e in Dartmoor and have recovered now

  • Maybe perceived cost would fit better? :) & back to the Yoga for the winter...

  • Thats the spirit, Yoga is great

  • You could call 111, the new NHS Direct number, to talk to someone. I agree with Carolyn,you need to get it checked out.

  • Hello Lilliput,

    I saw an endro last month (rather nasty one) he said that what I was saying was impossible and that all that was wrong with me was a slightly underactive thyroid, he said he would give me beta blockers to slow the heart down - as i pointed out to him that is masking the problem, then he said go back to your internet coz I can't help you, and so far which ever Dr I have seen the response has been simillar.

  • This might help- gives a good x-ref estimate to various auto-immune conditions.

    Linked from here earlier and it looks OK.

    Something may stand out, fill out all the boxes, some details repeat many times for good reasons..Scroll up for results, I didn't get an email after my effort.

  • Is it possible for you to get an ultrasound scan. If you're struggling with meds up/down surges and have sore glands in neck -then it would seem in order to request one soon, to eliminate nodules etc.

  • Hello Tegz,

    I have a multinodular goitre, they said it was normal, I am getting rather alot of discomfort, when I am feeling at my worst (like now) I get a hard lump sticking out on the left hand side - is that the Thyroid or the Goitre?

  • I don't know K- if it's been checked then at least it's benign.I don't think normal quite describes it!

    Quite few post here with nodules exp. - so maybe they can advise?

  • But Kitten, what has been done about the adrenal fatigue? The patient info leaflet which comes with the thyroxine tells you that if there are any adrenal issues you shouldn't take the meds until the adrenal issues have been addressed. T3 and adrenal fatigue are not a great combination. What have you taken for the adrenals? I had adrenal problems and healing them made a much bigger difference to me than ever any thyroid meds have done. I now take plenty of b vitamins, plenty of vitamin c as well as the thyroid meds but I did take cortisone for two years as the adrenals were so awful.

    What were your adrenal results? What has been done for them?


  • Hello Galathea,

    I had the ASI test done privately back in July 2012 - the results were taken throughout the day and showed that they were low, especially after midday, - total for the day was measured as 18.4 and the normal range was from 21 - 40 nmol so not to bad, I was told to take Nutri Adrenal - sadly that gave me really bad Diarrhoea so I had to stop it. The private Dr thought my adrenals would pick up on just Vitamin C and a Ginseng Tincture - this was not the case and by Feb 2013 I really thought my time was up, I could barely move, pain was terrible, breathing awful and then thankfully he told me to get some Hydrocortsione ( My GP wouldn't prescribe it) and within 7 hours of taking it, it was heaven and your right that made a big difference but I could never take much of it as I would get really nasty side effects, I feel that the adrenals are a big part of the problem but im not really sure how to proceed

  • So did you just give up with the cortisone then? How were you taking it? I went over to the adrenals thyroid group on yahoo and got a dosing schedule..... I was taking about 4 dosed per day, staring at 9 am because my adrenals had dropped by 11 am, then another dose at 2 pm, one at 4pm and one last thing at night......... I just knew when to drop the dose age...... Ad the last thing at night was the one I stayed on longest. In total I started on 25 mcg because it was an own bought brand which was not as strong as the prescribed one.

    Of course, you really should monitor your temperatures and plot them on a graph as per I took mine three times a day, averaged the temperature and plotted it for la out 18 months. If its low it suggests low throid.... If its stable its only thyroid, if its low and swinging about from day to day that is low thyroid plus adrenals........ When there are no adrenal issues the temps stay stable.....

    You really have to get them sorted or you will never be able to get on with the thyroid meds......

    Has the doc considered a short synathecen test if overall output through the day was low? Torule out addisoins disease?

    i Would do the temperature graph and send it to your private dOc...

    See what he says.....

    G xx

  • What side effects? And were you splitting the dose?

  • Sorry I forgot to mention that I did have the Synathren test and that came out normal - at least that means I don#'t have addisions disease x

  • Hello Galathea,

    Thats a great Idea with the graphs & temperatures. I did take the Cort four times a day but my last one was about 5.30pm because I was under the impression if you had it too late it would keep you awake. I do have fases throughtout the day where I feel really awful - but they are not normally at simillar times. I could never get to a normal Cort dose, 7.5mg was my maximum anymore than that I would begin sweating, my pulse would increase to over 100bpm, I would have trouble breathing, get sharp pains in my chest, and have a really nasty burning feeling around my chest. Now I just take 1.2mg every morning - If I don't take that I loose my sense of taste & smell. I seem to be stuck in a rut. Did you need Aldosterone for your adrenals?

  • No, the one last thing at night never kept me awake, even thou my cortisone levels were originally high in the morning, plummeting to a flat line from 11 am until bed time....

    The temperature graphs are a great way to self monitor.... I know everyone says to use a mercury thermometer but I couldnT get the hang of shaking it down...... So I bought a gigital one which measures deg. F off of the Internet....... It obviously matters a little bit if its wrong, but the main thing you are measuring is fluctuations from day to day........ Here is the link....

    G x

  • Thank you G - this is great advice. I couldn't get on with mercury thermometers either x

You may also like...