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Temporal Arteritis - advice please

Posted , 11 users are following.

dawn55273
dawn55273

I have had a swollen vein on on my left temple 3 times since February. The first time I dialled 111 and spoke to a Doctor who said he didn't think it was anything to worry about. The second time I went to see a Doctor at my GP practice. He arranged a blood test for Temporal Arteritis the same day, and this came back negative. He said to see how it goes and that I could just have a tendency to big veins on my head. The only other symptoms have been a mild headache in the area of the temple. The vein on the left temple was up again last week, and last night my right temple vein swelled up. I have now arranged another appointment for Thursday as I am worried. Are these the usual symptoms for Temporal Arteritis? Please any advice would be appreciated. I am supposed to be going on holiday in just over a week to China and India, and really don't know what will happen now.

1 like, 34 replies

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  • MrsO-UK_Surrey
    MrsO-UK_Surrey dawn55273

    Posted

    Dawn, you are being fobbed off by medics who don't know what they are talking about.  A blood test doesn't either confirm or rule out Temporal Arteritis.  A biopsy of the temple artery is the usual procedure when GCA/TA is suspected and even then sometimes the large blood cells they are looking for can escape the tiny portion of artery removed.  In other words, a negative biopsy does not totally rule out GCA/TA.  Some people with either PMR or GCA (Temporal Arteritis) or both, have never had raised markers of inflammation in their blood.  If your vein is swollen now and you have head pain in the temple area, then you should get better advice at A&E.  Certainly, if you experience the slightest problem with your vision or pain in your eye you must get yourself to A&E immediately.

    Have you been diagnosed with PMR/on steroids?

    • dawn55273
      dawn55273 MrsO-UK_Surrey

      Posted

      No I haven't. Am very worried. Are these swollen veins a clear symptom of temporal arteritis or could they be anything else? I am thinking about going to A & E now tonight. Do you think that is a bit drastic?
    • snapperblue
      snapperblue dawn55273

      Posted

      No, not drastic!!  Go!! Pronto!! Balance the cost of delaying too long against an unnecessarly visit to the ER.  No contest!
    • MrsO-UK_Surrey
      MrsO-UK_Surrey dawn55273

      Posted

      Don't think about it, Dawn, just go.  Better to be sure than sorry.  You are lucky in that you are even aware of Temporal Arteritis - some poor others haven't been so aware, have ignored the symptoms and have lost either partial or total vision.  Hopefully, you won't have TA, but don't for one minute feel you are wating anyone's time - they would far prefer to deal with you at A&E than a load of drunks or drug addicts, I'm sure.
    • margaret22251
      margaret22251 dawn55273

      Posted

      Hi dawn, do as the ladies say, i was worried on sunday as i had pains in my right temple for fours hours and my hubby said lets go, they were very good and i was nervous about going as i thought they might not know, but the doctors did know they gave me a real check over, said i did the right thing had to wait three hours for blood test, they said i was ok to send home but go see doctor on monday and also they found my sugur level was 8.7, so had  a fasting blood test on monday, waiting for result so that was good. The doctor as i was leaving said do not ever worry about wasting our time with what you have got just come better to be safe than sorry. 
    • bronwyn97278
      bronwyn97278 margaret22251

      Posted

      Hi Margaret;  makes me feel good knowing that you had a good experience at ED.....re the elevated blood sugars, it may be due to your prednisone, as steroids, when in blood stream, appear as sugar levels....went through same once after a cortisone injection....when bloods came back, said high sugar levels:  I discussed same with GP, and we both agreed that levels would be result of cortisone....all good....Bron
    • margaret22251
      margaret22251 bronwyn97278

      Posted

      thanks Bronwyn waiting for the results of my fast blood test, as the doctor said also when you eat, then have a blood test in an hour your sugar can be raised, so not worrying.
  • snapperblue
    snapperblue dawn55273

    Posted

    "A tendency to big veins on your head?"  You have got to be kidding!  Have you had them from infancy? If not, something is causing them to swell up!  

    I am a noted alarmist on the topic of TA, but it is a really dangerous disorder and, if I were you, I would run, not walk, to an emergency room. You may get help from your eye doctor in getting people to take this seriously.  

    Swellling of the temporal arteries is a specific symptom of TA, nothing vague about it.  You need to act fast and get a biopsy or go on prednisone before your trip, if you decide to take it.  Please take care of yourself.

     

    • bronwyn97278
      bronwyn97278 dawn55273

      Posted

      Good on you Dawn:  I read all other comments before replying, as I don't have PMR/GCA, but after having worked in an ED for many years, the comment re "rather do an arterial biopsy over seeing drunks" is certainly true....I also agree that "having large arteries, that come on soooo quickly" is a bit of a fob off, reason being that " maybe", because some doctors can't legally/know how to do an arterial biopsy .....it would also be advisable, if the biopsy comes back ok, an ultra-sound would also be a good idea, to ensure that your arteries are not weakened, as if they should rupture while overseas, that would be a real emergency, without the medical assistance that you would have at home.   Please let us know your results, as I know that we are all following up on this one.  Regards  Bron
  • dawn55273
    dawn55273

    Posted

    Thanks for all your replies. Unfortunately, didn't have such a great experience at A & E, but they were very busy. When I eventually saw the Triage Nurse and explained my problems so far, she made a quite flippant remark that they wouldn't be doing anything as this wasn't an emergency. I said that I had read that Temporal Arteritis could lead to blindness, and wasn't that an emergency, but she told me off for googling it and said the test had already 'proved' it wasn't Temporal Arteritis. I did say I believed the test wasn't conclusive. Anyway, she brought the Doc in who had the same attitude. He said no further tests would be done as the blood test wasn't positive. I asked if he could give me a report of our conversation (I wanted this for future reference in case any problems with my travel insurance as I go next week), but with hindsight I think he thought I wanted to sue him if I went blind! Anyway, he did repeat the blood test, along with a test for indicators of stroke and artery narrowing and all were negative. He was a bit stroppy with me then and said he would do all the paperwork since I had complained and would send it to my Drs, and I should follow up with him.

    My symptoms last night were: Vein protruding at right temple, pulsing twitch over right eye and sore eyeballs, headachey at both temples, aching through neck and shoulders to top of arms. Little bit of soreness around right ear, but no scalp pain as such.

    Would you all have gone to A & E with these symptoms?

    • bronwyn97278
      bronwyn97278 dawn55273

      Posted

      Yes I would have...and as an ex Triage nurse, (and if not triaging,I would be the Shift Co-ordinator, so always expected my staff to give the same treatment that I gave): I am very upset that you received such treatment !!! I always felt that if someone was concerned enough to come to an ED, then they needed to be treated with Respect, and they were seen and all appropriate treatment given.  You are quite within your rights to complain  re the Attitude.... that can always be an issue with staff that have Not been in that particular role for long; I found that staff who had a Lot of experience, always had more respect/time for their patients....but alas, I am also told that Nursing is not the same these days....all the Professionalism and university degrees are ruining the Profession.  I am soooo sorry you had to go through this....as if you don't have enough stress ....Bron
    • dawn55273
      dawn55273 bronwyn97278

      Posted

      Thanks so much. I was made to feel like I was a silly woman that was wasting their time. I am 57 and this is the very first time I have ever taken myself off to A & E like that - it isn't as if I go with every little thing. I will be seeing my Dr tomorrow and will bring up the treatment I received.
    • margaret22251
      margaret22251 dawn55273

      Posted

      I went with less syptems and the docs were great, said dont think you a pest, did all eye test felt jaw looked in mouth , checked ears, nose if fact i know what a horse feels like before a race.! and they did blood test and i can not praise them enogh the recepitionist did not know about the condition but when i explained to her she said yep thats an emergency and i was seen with 30 mins, dont put up with that, one thing for sure this  is making me a bit bolshy with the doctors if they dont know about it. take care, hugs sent to you.
    • dawn55273
      dawn55273 margaret22251

      Posted

      Thanks. I am going to mention the attitude to my Dr when I go tomorrow.
    • snapperblue
      snapperblue dawn55273

      Posted

      Dawn- That is really distressing! I am so sorry!  I found out in January that, once there was a suspicion of TA, there was no definitive way to disprove it.  So I am surprised at how frequently members of this forum report that a doctor just says “nope, not TA,” despite suggestive symptoms. 

      Did the doctor indicate what he thinks is causing your symptoms, if not TA?  

      This winter, I’d just been diagnosed with PMR when I had some possible indications of TA (nothing as indicative as yours!) Like you, I had a trip planned, one I was able to postpone by 2 weeks, probably not an option for you.  Before I left, I went over a list of possible symptoms (tender scalp, double vision, pain on chewing, loss of vision) and what to do if any happened.  As you know, ANY loss of vision requires immediate administration of IV prednisone, or the risk of permanent vision loss is substantial.

      I worry about your travel for two reasons- first, whether adequate and immediate care will be available and, second, the possibility (based on my experience as well as reports on this forum) that any added stress, even good stress like an enjoyable trip, can make PMR or TA flare up.  I’d want to have at least a supply of prednisone so I could take 60 mg a day if something went wrong.  However, as far as I can tell, you already have the kind of symptoms I am talking about! 

      Sometimes eye doctors are more aware of the emergency nature of potential TA.  It sounds like you are reluctant to “make a fuss.”   I felt the same in January, but that, above all, I did not want to find myself sitting in my room, blind, because I’d been too polite. 

      Unless the doctor gave you an alternative explanation (other than a tendency toward big vessels), it might be prudent to call an eye doctor or rheumatologist and explain your concerns and see if anyone will take you seriously. 

       

       

       

    • dawn55273
      dawn55273 snapperblue

      Posted

      Thanks for your reply.

      When I asked the A & E Dr what else it could be after he gave me the blood test results, he said that is a question for my GP and not for an emergency department. But he said he thinks it is stress. I planned to ask my GP:

      - If he has any other ideas about what it might be.

      - If it is unusual that it has only been happening since February or if these things can just come about on their own with age.

      - If there is anything I can do to prevent/reduce it.

      But I will also ask if there is any medication I can have to take with me in case it does turn out to be TA and I start to have vision problems. Remember, this Dr told me that the blood test he gave me initially was conclusive, and that is what the A & E Dr told me initially too.

       

    • snapperblue
      snapperblue dawn55273

      Posted

      I think most doctors think that blood tests that indicate inflammation are diagnostic. (These are ESR also called "sedimentation rate” and CRP, “C reactive protein.”)  EileenH says otherwise and she knows more about PMR/GCA(TA) than doctors who do not encounter it very often. But many doctors consider any information a patient has found on the internet to be unreliable, regardless of the source.

      Pain in the shoulders and neck also suggest PMR, especially if you have pain on raising your arms. 
If you are diagnosed with this, the doctor may take the possibility of TA more seriously (though the two conditions do not always occur together.)

      “Stress” is a rather general explanation for swelling of a specific blood vessel, isn’t it?  Perhaps you have never experienced stress before in your life, so this is the first time this sign has appeared?  Unless you have TA and stress is inducing a flare-up!! 

      I don’t know whether you have TA or not, but you are certainly getting a lot of evasive double-speak from your doctors.

      I wish I could ship my doctor to you!  Though he did not believe my symptoms pointed to TA, when a rheumatologist did think that, he willing went along with precautionary treatment (60 mg of prednisone a day) to protect my vision until the dust settled on whether I had it or not.  In less than a week, I was able to reduce from this high dose.

      I hope things go better in your next meeting with your GP. 

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