low Thyroid and doctor wont send me to endo

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I have had a low thyroid for about 14 years and I have changed doctors and they refuse to send me to a endo my level go down and up down and up. Finally my shrink tested me and treated me I started taking synthroid it caused heart paputations and I started itching all over and had a rash on my arms so I stop taking it, now im on armor and Im having pain all over my body, but im not sure if that the meds is causing it or not, but my head is feeling like i can think straight for the first time in along time. I just wish i could see a specialist. Im about to change my pcp again. I wanted to know about hashimotos i have auto immune disorder like psorisis, vitia d definiceny and iron to I also was dianosed with MS in 2004. I dont think I have it but my doctor said it could be something else but everything point to MS. Please give me some feedback.

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30 Replies

  • Posted

    Wow, you're coping with a lot at present sad. I've never heard of a doctor not giving a referral. I am in Australia. I am seeing my doc tomorrow to get a referral from him to an endocrinologist. I have been under active for about 15 years and just lately things have started playing up. Ive never been tested to see what my vitamin and mineral readings are and I want to see endo to get a complete picture of what is going on. I have been to see 2 GP's who specialise in thyroid but neither of them did anything other than normal thyroid tests. I am after more information. I take the synthetic hormone and don't have a problem with it. 
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  • Posted

    Dear Toddindy1

    I think that you should insist on a referral.

    You need the support and monitoring.

    Are you in the UK?

    I know how you can get a referral letter so you can send it to any endo.

    Kind regards

     

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  • Posted

    I have booked a private endo appt cos NHS was messing me about. Its £100-300 and apparently hes one of the best in his field. I do have the support of my GP (hes no idea whats wrong) .Ive had to use my flexible friend which I know I shouldnt but then I thought id pay that amount for my car and im worth more. Hope that helps
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  • Posted

    Hello Toddindy1:  I am an RN-Nurse and I live in USA.  I also have Hashimoto's.  I had it diagnosed in 1987.  I was diagnosed when I was 27. Some of the problems with Hashimoto's is the symptoms act like other diseases. Some commonones are:

    1. Feeling very tired/unable to really get over it despite rest.

    2. Loss of menstrul cycle/late periods or no periods.

    3. Weight gain/ unable to lose weight

    4. Mental or brain fog/confusion/ unable to perform a task

    5. Muscle aches and pains

    6. High and low T3 or T4 levels/unable to convert T4 into T3. Etc...

    7. Vit D can be low

    8. Goiter

    Now there are more symptoms, but these are common. Most GP's will refer you to an Endocrinologist. Since I am in USA it is fairly easy here, but can you appeal the decision you were given?

    Specialists have more knowledge and only do GLAND problems.  I would call them up and say I need to see an Endo, and if they say NO, can you write or call a patient advocate?  In USA we have those and they help the patients all the time.

    Now when I was diagnosed back in 1987, my doctor gave me synthroid also. ( I swear they must get 2 weeks at the synthroid mansion for always prsecribing it!! )  LOL.    I am one of the ones the med did not work on.  I took it and my level would not come up.  My doctor found out I can't convert T4 into T 3 .  Many of us have this problem and others can have a mal-absorption of it causing loose bowels.  Any hives, little bumps that itch are an allergic reaction.  There are a lot of OTHER Thyroid meds - so ask for another one. Some are Thyrolar, cytomel, and Armour Natural Thyroid.  We are all different, now my sister who also has Hashimoto's can take Synthroid and I can't. Go figure?

    Please call the GP, you should not be suffering and demand to see an Endo. I hope this helps.

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    • Posted

      Hello Shelly

      I have a multinodular goitre that was found as an incidental finding on a CTPA scan very recently.

      I see the endo sorgeon soon. In the meantime I am having terrible time with peripheral neuropathy and muscle stiffness. I have heard that a thyroid disorder can be responsible. My knees and ankles throb, I always feel cold N D have a slow HE usually aroud 58 to 50 for a number of years. Hoqever in the lst week my hr has increased between 80 to 108.

      I have first degree heart block and long qt syndrome.

      I am taking a beta blocker for the long qt.

      Could the goitre have caused long qt and heart block?

      The muscle spasms and pn are driving me mad. I also have epilepsy and A vIT d deficiency disorder.

      Will the thyroid meds help to get rid of the pn?

      My TSH is 0.17 t4 0.12 TPO is less than 33.

      Have I got hypo or hyper?

      Jean

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  • Posted

    Addendum to Toddindy 1:   I hate to say this, since I do respect medical people as I am a Nurse.  However, not all doctors are the same. Some graduated, but may not be as smart as another.  GP's do not always know complex gland problems like a specialist would.  You may want to say that to whoever you can complain to over there in your system.  A GP has some knowledge but it is limited and and Endo takes many of years extra in a specialty. Sometimes up to 3 years longer than a GP.  Some GP's are arrogant and think they know it all. Find one who has a good bedside manner and listens to you.
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    • Posted

      Hello Jean:  Nice to hear from yo again. Normal TSH should be between 0.34 and 5.60.  So in that test you are on the low side. Free T 4 is high since you should be between 0.7 -1.9 and not at 16.5 so that could be elevated but did they not do T3?  I wonder if you are going back and forth between Hyper and Hypo?  You TSH should be higher if you are on Thyroid meds.  Please forgive me, are you on Thyroid meds yet?  I would say you could have early signs of Hashimoto's or a slowing down of your thyroid gland and then your body puts a signal out to make more T4 and that could explain the higher FreeT4.   If you had pure Hyper -the TSH would be high along with other signs.  What other blood tests were done?
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    • Posted

      Hello Shelly

      THANK YOU it is very nice to hear fom you too.Thank you so much for the info.

      Thank you so much for replying. I appreciaate your interest more than you will ever know.Right now I need all the support I can get as husband is feeling rather stressed out with all this and he amosphere is tense.

      .

      I have to have a loop recorder inserted tomorrow as I have long qt .Please ask me any questions you wish I do not mind at all.

      You asked me if I am on any meds. Not for the thyroid disorder . Not yet as not yet seen by the endo surgeon appt is for June 12.

      A different hospital and dr of course kindly ordered the thyroid screening tests after I told her that a CTPA had showed a multinoduar goitre as an incidental finding on the scan which was done to exclude/diagnose another pe.

      The bloods for thyoid screening were taken on May 4.The scan was done on April 27 2015. Fortunately according to the CTPA  there was no evidence of an acute thrombo embolic event#/

      I am already on life long warfarin with a target range of INR between 3 to 4..

      VQ scab shows possibiliy of pe as patchy effusion/perfusion and d dimer of 486.

      I think that you are right about the diagnosis of fluctuating between hypo and hyper. On Aug 29 2014 private blood tests showed that the anas were beomg 1 in 80 suggestive of SLE\.

      The EBV was pos. suggesting exposure to glandular fever several weeks beforehand .

      I have all the signs and symptoms of hypo but in the past the signs and symptoms of hyper including chest pain and palpitations and fast HR.

      pls write back. I have pn which is driving me mad.

      Jean x

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    • Posted

      Sheely

      Other blood tests were the CBc, U's and e's. Thyroidperoxidase antibody less than 33,CRP which was less than 4. 

      T3 was not done.

      I was told that the other tests were normal.

      I have copies of the thyroid tsts/

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    • Posted

      Hello Jean:  Okay let's take this one by one.  The mutlinodular Thyroid which they picked up, is a good thing. Also these nodules will cause a normal thyroid to act up and may make the thyroid produce less of the horomones needed and you will notice low heart rate, sleepiness, muscle pains/aches can be severe, you can also find weight gain, confusion or unable to concentrate on a task.  So it seems the nodules are creating this. nodules can grow and can press and make it hard to swallow.

      Of course as long as they are not cancerous they can be left alone and take a horomone to replace low thyroid horomones.  On June 12, ask the surgeon if he thinks the nodules should be removed. The problem with operating on the thyroid is this, directly behind the gland is your trachea which is your airway.  It can be dicey, and some doc's try to avoid taking it out unless they have to.  The other problem is, if they take the whole thyroid out, it can be hard to get proper amount of horomone needed and it is a shock to the body. Of course this is your doctor's call, but you may not need the nodules out. It is common to go between Hyper and Hypo as the body will send out a signal to the Pit. Gland and then the message to make more T4 is sent and well the body tries and in some people it does that back and forth for a long time until it settles down. A Goiter is a symptom of it being low also. Your tests are recent and that is good, esp. when seeing a specialist. You said the EBV was positive and that glandular fever weeks beforehand. All of this indicates a problem with the gland, which is good to know, even though you have the problem.

      The other area is your heart problem.  The segment in the beat of the heart where it makes a contraction to pump blood  and relax phase seems to be too long.  Normally the phase is quicker.  This could be a family inherited trait or could be coming from your low thyroid level or another disease process in the body. When you are in Hyper phase it would cause a racing heart beat, chest pain and palpitations. This needs to be looked at by a cardiologist or a very good GP to see if you need special meds for it or to just watch it for now. They have lot's of meds for the heart so many things that can make it better for you. I think the loop recorder will give them a clearer picture as to what exactly is happening in your heart.  I know having multiple health problems takes a toll on you but hang in there and having your consult in June and then you will know more.

      Keep on the warfarin to keep your blood thin and avoid a PE, which can be deadly.  we live in such good times and modern medicine has helped so many, including myself.  I think you have a low thyroid and are having the effects of it as it is untreated  right now.  Please feel free to contact me and I will do my best to help.  XO Shelly

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    • Posted

      Hello Barbara:  I love being able to help people, and being a Nurse, if I can help, I will.  I like being able to talk with people who have what I have. I only wish we had this back in the mid 1980's when I was diagnosed and handed a small paper. Today we can communicate with people via this wonderful forum and  maybe share what works for us and help someone else.  We all have to try and help another if we can.  I hope Jean can get her medical problems sorted out. It is scary when you do not know, and knowledge is key.  I am glad to help.
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    • Posted

      Hi Shelly

      Thank you very much for your very informative reply. I wrote my response last night but when I clickked on Reply to Shellly the reply disappeared off screen.. I made a further two attempts and the same thing happe ed, so I gave it up as a bad job.

      I will reply to you but at the moment feel too tired to do so.

      I will try to send this now. I am grateful to you because it must have taken up a lot of your time, however I fely a lot haappier reading your response and ready to cope with having the loop recorder inserted. Problem is/was that it was caancellled as INR too high at 4. Needs to be 3 otherwise a haematoma will form around the device, get infected then the whole thing wiill have to be removed!!

      Shelly I will write again in response to your very caring, informative and reassuring post.

      Thank you

      Jean xx

       

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    • Posted

      Hi Jean and everyone, I read somewhere on this site that they know messages sometimes disappear and they are trying to find out why and fix it. A good way of minimising its effect is to press and hold on your message before you send it. Click on 'select all' (top left icon on my phone), copy. Then if the message gets lost, it is just a matter of pasting from clipboard to get it back.
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    • Posted

      Hello Jean:  I am sorry the test had to be cancelled.  Yes, you do not want to have a blood clot or get an infection.  I care how you are doing and I am checking my alerts via  the e-mails sent by this forum.  It does not matter about the time it takes to write back.  If I can help in any way just ask.  If I know it I will be glad to help. Rest yourself. XO Shelly
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    • Posted

       

      Hello Shelly

      Thank you for your understanding response.Knowing that your support is there at all times is comforting and makes a tremendous differener emotionally.

      I now await another appointment.

      Hopefully I will not have to wait too long.

      Once again thank you for your help and support.

      Kind regards

      Jean x

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    • Posted

      Hi Shelly, do you mind if I pick your brains about something? I would like an unbiased opinion from someone in the same boat as me! I noticed you mentioned being diagnosed in the 80's, so am assuming you have been on thyroxine for a while as I have. Of late I have become interested/concerned about the long term effects of thyroxine. One doctor told me it may cause rapid, irregular  heart beat which I k ow can possibly lead to stroke. I also thought cholesterol was affected too but doctor said no. Just wondering what your understanding is of risks associated with long term use? 
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    • Posted

      Hi Barbara

      Thanks for te tip. I will try it out.

      Thanks also for your support especially at this very difficult time.

      With kind regards

      Jean x

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    • Posted

      Hi carolann, I have been on thyroxine since 1998. The thyroxine we are taking is merely giving our bodies a substance (hormone) that it should be producing itself. The 'side effects' you mention aaren't really side effects, they are indications the dose is too high. They are the symptoms of hyperthyroidism. If you are on the right dose of thyroxine they won't happen. Having said that, osteoporosis happens a lot in the general population, irrespective of whether they are on thyroxine, so in an effort to mitigate against osteoporosis, 4+ hours after taking thyroxine, I take a supplement containing calcium and magnesium. If one has an underactive thyroid it is also a good idea to take vit E and selenium.

      Barbara x

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    • Posted

      Thanks. I am compiling a ist of questions for the endocrinologist so will question her about the points you have raised. smile 
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    • Posted

      Hello Carolann: This is a good question!  When I was first diagnosed I was put on Levothyroxinne.  I had severe problems with it. Mine were unable to take T4 and convert it to T3.  After having so many blood tests and the level was still low my doc., switched me to another med called Armour Thyroid.  I was much better. Now I am one Liothyroxinne which is mostly just T3.  I am able to function well without side effects on just T3.

      Now the meds just replace the horomone, but all medicines have a half life in the body once a level is obtained. If a person has poor kidney function or bowel function, (example would be elderly or a person who does not have enough hydration), you could see less excretion and a rise in the level. In some people the med can cause a rapid heart rate because it is not a timed released type of drug. Whenyou take it you get a BOLUS which lasts for 24 hours in your blood stream.  So in a way, it could if used long term, give a person a high pulse, thus leading to other problems....  Most people do not have that.  An easy fix is break the pill in half take some in a.m. and some later in day about 6 hours later.

      If you have a problem or any cardiovascular disease then, proper monitoring of the heart would be a very good idea.

      Hypertension (high blood pressure) is more of a danger than long term use of thyroxine. Uncontrolled hypertension is a big cause of strokes and heart problems.  This can be treated by meds and diet.  Also having high cholesterol the (LDL) is bad.  These can be treated by meds/diet together.

      I hope this makes sense. Most people have no problems with long term use of Levo or any other thyroid drug. 

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    • Posted

      Dear Barbara  A Bolus is when a  med is taken or given to a person and it is not a time-released drug.  It refers to a dose that the body has to absorb and handle all at once.  In a horomone it is a dose all at once and not broken up.  Sorry I will avoid using it in the future. biggrin
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    • Posted

      Thanks Shelley, that's reassuring. I take eutroxsig and have never had problem with it. Also don't seem to have an issue converting T4 to T3. Think I'll try cutting the tablet in half though and takes some in the morning and some in the evening. I actually have low blood pressure and good cholesterol reading although I wouldn't mind my LDl  level dropping a bit. 

      Thanks for your response! smile 

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