It must be 13 years since i had my thyroid op. I am not on any thyroid medication In the past ten years I have been feeling progressively worse in the past year I am barely able to cope I have piled on weight most of it on my tummy, my hair is thinning, I am tired all the time, my joints are very painful, i am losing my ability to concentrate, I have got IBS, acid reflux, constant sore throats, husky voice, in the past six months my skin has become very dry and I have patches of psoriasis all over my body, my nails are ridged and break easily, I have a choking sensation when ever I eat, I have developed food sensitivities I need to carry heavy duty anti histamines with me all the time I can eat something one day and two days later have a bad reaction to it. I am having panic attacks daily and my heart races and I am so cold especially at night

I do also suffer from ptsd and my GP puts most of my symptoms down to that. I lived with and have been in stressful situations most of my life and I take medication that really helps and thanks to a great psychologist I do handle it very well 90% of the time I feel if it is down to my ptsd why did these symptoms not happen ten years ago when things could not have possibly been any worse for me. At the moment I can't even work or go out on my own.

i really don't know what to do any more

24 Replies

  • Hi Tilly

    You don't have any history on your profile, so I am assuming pstd is post traumatic stress disorder?

    What type of thyroid op did you have? All of your symptoms sound very hypothyroid and if your TSH doesn't 'fit' that's probably the reason you've never been properly diagnosed. I would assume you've been diagnosed as pstd instead of hypothyroid as they appear to have ignored your clinical symptoms.

    Your last post was two years ago and members asked if you could get a print-out of your blood test for your thyroid gland. I don't think you posted them. Has your GP done a recent blood test for your thyroid gland? If not make an appointment next week to have a Full Thyroid Function Test. Please demand one. TSH, T4, T3, Free T4 and Free T3 plus Vitamin B12, Vit D, iron, ferritin and folate. Our bodies cannot cope without sufficient thyroid hormones and I think you are in urgent need of them so please get a thyroid hormone blood test pronto. Post the results, with the ranges on a new post so that we can give you help/support you require.

    Our thyroid gland, if it is not functioning properly, very slowly and very gradually we get worse. Some peoples TSH never gets to the level of 10. It is a disgraceful way to diagnose patients when they ignore clinical symptoms.

    Also, take your temp before you get out of bed each morning and take a note of it. Also take your pulse as well.

    By the way Blue Horizon have special offer for December if you are able to pay. I shall see if I can get the link for you.

  • What should pulse be ? Mine is low at home and fast when near white coats!!

  • An average pulse is between approx 65 and 100.

    If we are hypothyroid and not on sufficient medication, our pulse will be lower/slower.

    When Adrenaline is pumped in i.e. (frightened) white coats our pulse will rise.

    When we take a record of our pulse and temperature, both will rise when adequately medicated. Sometimes, however, they wont come back to what was normal when we were well but will rise enough so that we no longer feel cold. This is a better explanation and this is an excerpt:-

    Until the 1940s, hypothyroidism was diagnosed on the basis of signs and symptoms, and sometimes the measurement of oxygen consumption (“basal metabolic rate”) was used for confirmation. Besides the introduction of supposedly “scientific” blood tests, such as the measurement of protein-bound iodine (PBI) in the blood, there were other motives for becoming parsimonious with the diagnosis of hypothyroidism. With the introduction of synthetic thyroxine, one of the arguments for increasing its sale was that natural Armour thyroid (which was precisely standardized by biological tests) wasn't properly standardized, and that an overdose could be fatal. A few articles in prestigious journals created a myth of the danger of thyroid, and the synthetic thyroxine was (falsely) said to be precisely standardized, and to be without the dangers of the complete glandular extract.

  • Pulse about 69 at home over 100 at nurse

  • The temp/pulse recording is called a Basal Temp Test and these are instructions. It's only taken when you awake and before you get out of bed.

  • I've heard of that I'm really cold in the morning . I did tell the thyroid nurse about me bring cold and she didn't seem to care . I've got a dr appt after new year so will bRing this up again

  • Unfortunately, neither doctors nor thyroid nurses are aware of any clinical symptoms and are only concerned of the whereabouts of the TSH.

    I you might need an increase in meds particularly when weather is cold. Tell your doctor you are very cold and ask for a Full Thyroid Function Test, i.e. TSH, T4, T3, Free T4 and Free T3. Also, if not recently done, B12, Vit D, iron, ferritin and folate.

    Yesterday I shook hands with about six or seven people. What struck me most that their hands felt very cold and that's because my hands were very warm. I am warm because my meds are at an optimum and how I know they are at an optimum is that I feel normal health. I forget completely I am hypo.

    To feel very cold is a clinical symptom of hypo.

  • I wanted to let you know that when i get a notification of a response, and click on the link, it now, only takes me to the top of the page, with the response and i have to scroll down, and search through everything.

    Thanks ..i hope you can alert someone for me. Going to the HELP section, had issues no longer available

  • Yes, it's a nuisance I've been doing that today too. If it happens again tomorrow we should both report it. Maybe it has already been reported by others.

  • When i report it, it says, that the page isn't available. Also, for the past 2 weeks, it tells me that the post or response, was erased. I mean, whatever i wrote to this woman and her response is gone. It was not like it was inappropriate either. I really don't know how to report it.

  • I tried the Help at the top of the green bar just now and it usually takes you to a page in which you can email them but not this morning.

    It's all been changed. Now when we press the help button we have a new 'Page'. We then have to cursor down to 'troubleshooting', and - "if none of the articles in the Help Centre page resolves your problem for you, please get in touch" - We then click 'get in touch' after we have checked that none of the of the items solve our problem.

    As for the second point, if the person who did the post deleted it themselves, all other responses etc will disappear too. The post can only be deleted by Admin if it is against the guidelines or the person who originally posted. We can only delete/edit our own responses on a post.


  • It has become a real issue to see responses..looking through 86 responses! I still don't know how to report this. Can you spread the word that there are issues? Thanks

  • Tilly, Why are you on no medication? What was your op? Thyroidectomy? You clearly should be on some medication and I am mystified as to why your GP is leaving you in this terrible hypothyroid state. You must ask for thyroid function blood tests, together with iron, ferritin. B12, Folate and Vit D, which are probably all very low. Then post results here with reference ranges for advice. One hopes that when your GP sees results, he will start you on meds immediately. If not, unless your results clearly show you are not hypo, I suggest you change your GP.

  • Tilly, if you can post your recent thyroid results with the lab ref ranges (the figures in brackets after your results) members will advise whether you need Levothyroxine. Unfortunately, some doctors know so little about thyroid they are inclined to tell patients that results anywhere in range are 'fine' or 'normal' when they patently are not. Your symptoms are clearly hypothyroid.

  • What tests have been done ???????????????????



    Free T4

    Free T3

    Thyroid Antibodies



    Folate have been done as the most basic tests

    what are the results

  • I can practically guarantee that I won't have been the only reader of your post who thought, "Hmm, thyroid op, eh? Wonder if that PTSD was misdiagnosed and it's been a thyroid problem all along?"

    Don't get me wrong - I'm sure you did have an awful experience of some kind and I'm not downplaying that, or the horrific effects events can have on us all. But wonky thyroids affect everything about our physical and our mental health, including how we cope with terrible situations. I hope to goodness your doctors haven't failed to recognise an ongoing thyroid problem all this time. But I'm afraid to say it wouldn't surprise me in the least if they have... :(

    If you can, please find out what your thyroid tests actually were - numbers and ranges. The people here are fab at interpreting what they really mean, and the collective knowledge base far exceeds that of many endocrinologists.

    I wish you all the very best for 2015 and hope it's the year when a corner is finally turned.

  • were told 2 years ago, to post thyroid results and were given Louise W's contact info, to get you a good doctor. I know we are supposed to help one another here and be nice, but @#$%%$#! I can't help it! You have to help yourself too! How can you like the Psychologist?!!! She apparently isn't listening to you! You are extremely Hypothyroid and ill. All of your symptoms are just screaming HYPOTHYROID! Why did you have thyroid surgery in the first place? I am wondering if the Psych. meds are interfering with your ability to move forward on your health, by causing you to become forgetful and confused?

  • Please..have someone help you to get lab results and look into the Link to Louise, or have someone else do it for you. You are in terrible. desperate need of help, now. Please stop listening to the doctors, that hair loss, brittle nails, reflux, huge weight gain with barely eating, is because of PTSD..does this really make sense to you?

  • I think it only makes sense when you believe/expect the doctors to deal with and diagnose problems. Until you get a rude awakening like most of us on this forum.

  • I don't know, i guess i'm different. I know my body and refuse to believe it's mental, when it's physical. I feel terrible for Tilly and would be surprised if we hear back from her.

  • If your doctor is not caring for you as s/he should, then get an appointment and insist on a referral to an endocrinologist. Your GP cannot refuse you a referral, and you will get to see a specialist. You certainly sound like classic hypothyroid to me. Good luck and keep us postal on your progress.

  • Tilly, I think you need thyroid medicine ASAP and I don't understand how you went without it for so long. Find a good thyroid doctor.

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