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Hashimotos Thyroiditis - Help?

Posted , 3 users are following.

susan26137
susan26137

I am a young & fit 52 year old, that is up until the last twelve months. I have been steadily putting

on weight no matter how I controlled my food intake or how much exercise I did. I was so tired that driving home from work I could barely keep my eyes open and felt I should stop and have a sleep. I had unbearable knee and back pain. Constant headaches, dry skin, and depression. Heart racing, sleeplessness, bouts of heavy arms below the elbow. Constant bouts of chest infections and colds. At nights - bed feels like it is burning, and night sweats. No libido. Dizzy spells and forgetfulness.

I knew from Breast Specialist after having breast cancer three years ago that I would go straight into menopause so I put symptoms down to this, overworking, netballers knees, anything and everything that I could think of no thinking of hypothyroidism.

I have been begging with my GP for help over this period. At first he said take a holiday it was stress. I did - no change. 3 months later I again begged for his help. He allowed me to have Kliovance for menopause. This helped with the sleepless nights and the burning bed. No changes to the other symptoms.

3 months later I again went back as the tiredness to the point of not being able to keep my eyes open was worsening. Whilst in his office I had a bout of 'heavy arms' and he did an ECG. I told him there was nothing wrong with my heart! ECG clear. I again begged him for help. He ordered a Stress Echo test and a scan of my heart to see if there are any blockages. I told him that my girlfriend suggested thyroid problems and demanded blood tests. These came back with TSH 15.5 and Neutropenia - and was told that the brain had put the brakes on my thyroid. Have another test in a month. During this time I started taking a series of vitamins (as suggested by a naturopath) (Tresos B with Selenium, Iodine drops, fossil clay flour & Enduracell plus (broccoli)). The next blood test came back with TSH at 9.5 and I did feel a little better, but not great. My GP's response, no action required.

By this stage I have a very large goitre in my throat and have difficulty swallowing even a glass of water. I consulted another doctor at the same practice and demanded help and was referred to a consulting physician. He started me on Thyroxin 50mcg per day for two weeks followed by 75mcg for two weeks, then have more blood testssee how things are.

I have been on 50mcg for one week, and have noticed significant improvement in the pain in my knees, lessening of my goitre in the throat, still tired at times but not as bad, headaches are lessening, sleeplessness not as bad. Depression not as bad.

Now for the side effects. First week, bout of swollen stomach, itchy scalp, stomach cramps and diaarreoh.

I was at first scared to be on tablets for the rest of my life but my life was not worth living with the symptoms I had. Now I am wondering if I went off the Kliovance would the thyroxin also treat the other symptoms that I previously put down to Menopause? The consulting Physician said that my goiter will never go away, but may go down. What alternatives do I have? Will I ever be able to get this weight off even if I am on thyroxin?

Any and all help greatly appreciated.

0 likes, 13 replies

13 Replies

  • designergirl12
    designergirl12

    Posted

    I am absolutely appalled that your doctor should have let you develop a goitre!! You must complain to the medical board for negligence, he should not be practicing!! He could have endangered your life!

    When they sort out the correct dose for your thyroxine you will eventually get your weight under control. You may not be the weight you were before this started but you can get rid of a lot of it.

    Doctors' negligence should never go unchallenged.

  • designergirl12
    designergirl12

    Posted

    Oh heck, I was so angry I thing I posted over your original post, Susan! Please post again.
  • susan26137
    susan26137

    Posted

    Thank you for the encouragement. I helps me to think that I may get the weight off. All important to me is that I want to get my old life back. Ironically, I have not heard from him all through this until last week after I completing the heart tests - to make an appointment to see him. I already know the heart tests are clear, because the cardiologist at the hospital told me this. The physician is not convinced that this is all thyroid problems, but he said that by taking thyroxine if it relieves all the symptoms, we know it is hashimotos, if not we can investigate the leukemia path or even tumours on the hypothalamus or pituritary glands.

    When I do see my GP in two weeks (yes first available appointment 3 1/2 weeks away - this is usual), I will certainly be expressing my displeasure at with his medical performance.

  • designergirl12
    designergirl12

    Posted

    OMG! I hadn't thought of those other illnesses, do you have to go back tot he original doctor. I would change...
  • susan26137
    susan26137

    Posted

    I live in small country town. Not that many choices and because I have not lived here very long, don't know too many people to ask who is good and who isn't. Doing my research first. The blood tests showing neutropenia is why they think I could have leukemia, this has shown up in successive blood tests, however, I don't really think this is the case although I keep picking up every infection under the sun because of my high white cell count. As for tumours on these glands, this could be a possibility - benign tumours can be causing the issue. In any case, I just want to feel better. I started taking thyroxine on 13/1/14. I have noticed that I have absolutely no appetite, headaches are still there, but not as bad, knees much better, but noticed on Tuesday coming down with yet another chest infection. No head cold, nothing. Just chest infection. I have had these almost continuously since 1 Nov 2013.

    I want to thank you for chatting, I don't have anyone to even talk to about this.

  • pippa22119
    pippa22119

    Posted

    Hi my lovely, I absolutely agree with designergirl12! Had your doc not noticed the goitre? These don't come on willynilly and in early stages. I would at least get advice from Citizens advice about getting this bloke told off!!!

    BIIGGG HUG!!!!!!!! x

  • pippa22119
    pippa22119

    Posted

    In the meantime, DO NOT let them take you off of the thyroxine! Unless this causes you to go HYPER of course, in which case the dose should be lowered at first, not cut out all together!

    That ALL your symptoms will go away on thyroxine is total BS! I have not met one person who has got totally back to normal and all their symptoms go! I indeed, still have all my symptoms, in a much reduced manner, but still definitely there, and my TSH and T4 are normal! This is after 20 years of treatment. (It has to be said however, that diagnosis and treatment taking only these two treatments into consideration is ridiculously inadequate.)

    There is a UK site which will give you a huge amount of info re other tests that CAN be done, ( T3, thyroid antibodies, Free T4, Free T3, Reverse T3, Reverse T4 aswell as others,) though some docs can't be arsed, because they cost more. That is Thyroid UK!

    (I hope this gets through to you, because this forum often holds up posts to moderate if you put down any other source web sources.)

  • susan26137
    susan26137

    Posted

    Thank Pippa22119. Your comments are enlightening and encouraging. I live in rural Victoria, Australia, which I might add has been known to WHO since the 1960's for "Gippsland Goiter, so yes, blind Freddy could see my enlarged throat. Yes, I am angry. I already told him off in April last year for being so flippant. I don't go there unless I need something. So I am very angry that it has gotten to this. He definitely will be on the receiving end of my wrath and the threat of a law suit. He knows that I am not someone to be trifled with.

    Unfortunately this is not the first time a GP has almost killed me. But I do have a lovely letter of apology from my previous GP for misdiagnosing pneumonia to the point that by the time I was hospitalised, my family were called to my bedside in case "she doesn't make it though the night". After two weeks in intensive care, and three weeks in hospital, I did recover but not with help from the GP. Perhaps my expectations are too high, however, I do expect a reasonable standard of care for which I am a full fee paying patient.

    Thanks again.

  • designergirl12
    designergirl12

    Posted

    Hi Susan, can you ask to see a specialist in a city. Obviously these docs are missing something.

    A practice nurse put me on too high a dose of thyroxine which caused gallstones and now diverticulosis.

    My current doc is trying to clean up the mess that this idiot nurse did. Keep on at your doctor to see a specialist, this situation should not go on for too long.

    And yes, BIG HUGS, GROUP HUG!

  • susan26137
    susan26137

    Posted

    This is my next step trying to get a referral to an endochronologist/ haematologist.

    Yes, they have had plenty of changes to do something, so I don't want to be made any worse now. I am over it.

    Thanks again your moral support is fantastic.

  • ellynn32
    ellynn32 susan26137

    Posted

    Susan, I am 76 and have had Hashi's about 15 years.  You need a young and up to date endocrinologist.  Immediately.  Insist on it.  There are many books on Hashi's available on Amazon and you need to start reading everything you can.  There are diets especially for folks with Hashi's tho it is a tough row to hoe, no doubt about it.  The awful acid reflux is one of the many many complications of Hashi's.  I find kefir helps and so does no sugar, no gluten.  You will have to keep reading and keep insisting on the best treatment.  GPs just aren't qualified.  Good luck.
  • mhwh
    mhwh susan26137

    Posted

    Hi Susan, I have just joined this site. Mine is also a very long story having had pneumonia on and off for a year but couldn't shake it off and had lots of the usual symptoms. Life was not worth living and when the doctor said that the problem was now hypothroidism and easily sorted out with thyroxin I was relieved. The thyroxin got my TSH levels right but I still felt dreadful. I am now on T3 and have discovered by myself that if I take half in the morning and half at night I can cope better with it. I now realise that the pneumonia and other symptoms were all down to the thyroid which my respiratory consultant would not even consider because he just deals with the lungs - we need a more holistic approach. If you are on the right levels of T4/T3£ then your weight should rectify itself. I find diet is really important, disease cannot live in an alkaline environment but most of us have a very acidic diet. The best thing I have done is drink plenty of lemon water which is alkalising, good diet and iyengar yoga as we have to take charge of our own lives too and not depend so much on doctors   
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