Up to date with APS/THYROID/LUMPS on the hand etc

I last wrote on here because of the conflicting opinions about all my health problems. I'm on Riveroxoban plus 175mg of Thyroxine. I still don't & cant find out what it means.

As to the lumps by the wrist, now I have hardly any feelings in the end 2 fingers, the end one is stone cold, the fingernail is completely white. When I went to my GP orginally, and told her about my daughter having fibromyalgia, (I have the same symptoms), she replied, you probably have. After 6mths I finally got a scan and it showed a small ganglion but the tendon is so swollen that they cannot see exactly what's going on. Also a nerve (but their not sure what or where it's attached to because of the swelling). I was told NOT to use the hand what so ever, just do small little excercises every few hrs. And to wait to see a specialist. My hand goes into spasms & distorted. Now I'm still waiting (10mths). I can't take any antiflamtory drugs because of my allergies, I've got not no grip and it's spreading to each of the fingers and up to the wrist, elbow and shoulder. I was told it's not Tendonitis.

I'm suffering bad with depression now, its affecting my APS, my memory is getting worse, Im tired all the time, don't want to do nothing. And it's has got to the point that I hurt all over. My blood is sluggish as my surface veins are swollen in the legs. All I have to do is WAIT!!!!!! So that's the update of the last time I was on here.

Hi, Kerstin, I hope your well

Regards

13 Replies

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  • Have you been tested for RA too.I have and I have these ganglions at wrists and at other joints.My right hand goes number but not so much now as on DMARDS that is controlling disease.Thing is with Fibromyalgia and RA symptoms cross and could be both

  • Hi Teanna,

    I have reread a little of your earlier questions.

    9 months ago APsnotFab (who knows our situation so well here with autoimmun illnesses that go hand in hand like cousins) answered your question "My name was Firefoxie ......" and she told you to test all the blood-tests we need to do for Thyroidea. Your GP did not listen to that ear so you have to go privatly to take those tests I guess if you have not changed to a better GP.

    Thyroidea and Sjögrens and HS/APS are "the three big" illnesses that are linked together as our Specialist No 1, who is prof Graham Hughes, has said several times.

    Listen to APsnotFab what she says about the tests. That is really important that we do all of those blood-tests as to Tyroidea. MaryF is also always talking of the importance of all tests.

    Also you should test your daughter for HS/APS as you say she has the same symptoms of Fibromyalgia as you have. How old is your daughter? They are often misdiagnosed so therfor you and she need a Specialist of autoimmun illnesses (get her tested for HS/APS first of all).

    I guess you live in England and it should not be too difficult to get a Specialist in England. The country of prof Hughes. The best and easiest way would perhaps be if you could put up a new question with a demand for a Specialist where you live.

    Good Luck to feel better with the right Doctor and the right treatment. Keep my fingers crossed for you and your daughter!

    Kerstin in Stockholm

  • Hi, I agree with Kerstin, time now to get more help. If your GP, wont help demand to see a specialist. Xx

  • Hi Teanna Im so sorry that you are STILL suffering. I have spent the time reading through all your posts since you wrote you had changed your name from Firefoxie. Its ludicrous that you are still in the same position you were back then and nothing has changed. If I were me in your situation, there is a number of things I would do.

    1. With regards to your tendons and ganglions, what you describe sounds very familiar to me. Last year I developed one on my thumb joint and elbow and like you it was making it numb and affecting my wrist and muscles up to the elbow. I had a scan guided injections which helped for a couple of months and then it started to come back. I was then put on a low dose of steroids (10mg) for something else and funnily enough that helped my thumb and elbow. Since stopping the steroids the pain has not returned even though I can still feel the lumps. Perhaps you can also ask for a prescription for low dose steroids to tie you over until you get your injections. It may also help with some of the other inflammation.

    2. Your Thyroid. before I get into that, have you had your ferritin , B12 and Vit D tested? If not you MUST have these done because if you are not in a decent part of the range you WILL get symptoms and your thyroid will not be able to work or the medications work. So, get those done first. As far as getting the other thyroid tests done I think you are flogging a dead horse asking your GP to do them. Go to Medichecks where they have a special offer on to do TSH, FT3 and FT4 for £29. They will send you a kit in the post. Don't do the test on a day where it will mean the blood will arrive on a weekend. I do mine on a Monday morning, in fact Im doing mine this Tuesday because Monday is a Bank Holiday. Don't take your meds before you do the test. All you have to do is to prick your finger and squeeze it so the blood drops into the vials they send you. Once done you can take your thyroid meds. Once you have the results, which should be a day or so later, you can put them on here and we can tell you what we think about what your Doctor should be doing with your medication and you have something to take to the GP that they cant ignore. I cant help thinking that you are another candidate who, like me will be better off taking NDT because of the added T3 component.

    As for the Dr (specialist) who discharged you when you were asking for additional tests, well she should be reported and I urge you to complain to Pals of the hospital where that happened.

    3. Your Fibro sounds to me like its being caused by your thyroid and Sjogrens Syndrome. As to the thyroid we will see but for the Sjogrens you can ask to be put on Zentiva Hydroxychloroquine 200mg which may help with all the pains and fatigue.

    4. Im very uneasy about what you are describing with your symptoms, and it seems to me that the Rivaroxaban may not be suiting you. You must insist that your GP sends you back for an urgent appointment with Prof Cohen. Before you go you must spend time writing down all your symptoms no matter how trivial you think they are. Keep a pad and pen on the table where you can see it to jot things down as you remember or experience them. Once you see her don't hold back, make sure she understands just how bad you feel.

    Finally, If I were me I would be changing my GP. What you have described about the way your surgery are treating you is despicable (GP going off for 2 weeks on holiday with no replacement allowed to prescribe) because thats against their GP contract and they have to make sure there is someone who can manage you ALL of the time. If you get any issues with any of the above then I would write a letter to the practise manager and list all the things that you have written here, say you want an urgent meeting (not appointment) to discuss your treatment and their attitude towards it or you will be making a complaint to the CCG.

    Im sorry this is so long but it is cases like yours that make me so cross. It is simply not good enough to have patients getting depressed because everyone is passing the buck and have lost sight of the fact that they are supposed to be helping you not making you worse. If they cant handle your care then they should admit it and refer you to someone who can.

    If you need further help please just ask but keep us updated.

  • APsnotFab,

    Nothing to be sorry for ....... as everything is there.

    Kerstin

  • I could not agree with this detailed reply more, I have been away camping, and am just catching up with all the questions I have missed. I have also recently done private Thyroid testing. I do it every few months, I also do my Reverse T3 with Thyroid testing. The state of Thyroid care, testing and medication choices is dire currently. A lot of people do better on natural desiccated thyroid. I might add I also add in B12, D, and Iron testing when doing my Thyroid, and as Lynn says all must be within range or any thyroid medication will not work.

    Have you joined Thyroid UK on this platform, we do advise most of members with Thyroid problems to to join that forum also. My daughter also has Hughes Syndrome/APS and also Lupus, naturally I have her under the right consultants!

    MaryF

  • Thank you, it's just so frustrating. I did see Dr Cohen a couple of months ago, I had a long list of questions but because the clinic had almost finished and she had to get out of the room as another Clinic was due to start, I was rushed in and out in 10mins, none of my questions was answered, and was thobbed off and given another appointment in a year, and to have my bloods taken. I really did try to ask about all what suggested, but she had no time.

    Thank you for your suggestions and I'll certainly have this blood test that you suggested, £29 is nothing if it's going to help.

    Again thank you

    Teanna (firefoxie)

  • Well I'm sure if you make sure you are not the last patient this time she will give you more time. 10 minutes is not enough when you only get to go once a year and perhaps you can politely remind her of that. If you do have a Ling time to wait until the next appointment then don't wait for it, call up and ask to speak to her secretary and leave a message saying that as you only got a brief appointment you are unhappy with the way things are going and worried about the symptoms you are having on the medications so you can't wait till whenever it is to see her you need to come asap.

    Half of the problem is you feel out of control and that just makes things worse. Once you feel you are controlling things more you will feel better able to cope. It always makes me laugh when NHS England make sweeping statements about giving patients more control about their health and encourage self help and becoming expert patients. When an expert patient turns up in front of a Dr they can't cope and run a mile! It's time that Drs not administrators asked what patients wanted, and we didn't have a system trying to enforce something on everyone that no one wants or can handle, then playing lip service to new initiatives that are disguised as cost cutting.

  • Thank you for your advice. The appointment I had was an early one but the ambulance did not turn up until my appointment time, so we had to call through to make sure that my appointment was still available, I just there in time. That's why I she only had the ten minutes. I did say about the riveroxoban, because of my INR range used to be 3-4 but they did prefer me at 4.2/3. But I still got a DVT at 4.2, so it does worry me as the swelling in my legs you can see the lumps (thrombosis), they go up and down, the more I rest they eventually go down, but I've got to exercise them, then I get a flair up. My legs are now black, it's worrying. I'm told that the blood goes down ok but struggles to come up. They did remove some of the veins, but other doctors said that it should not have been done. I can't wear compression stockings as I'm allergic to them.

    I'm literally going around in circles. My carer comes to every appointment etc, and she does as much as she can, but the doctors and my GP do not communicate at all.

    I'll try and get the blood testing kit that Kerstin suggested. But I've never heard of it around here, where would you go for it?

    Thank you for all your help.

    Teanna (firefoxie).

  • oh my! You have been through the ringer! Yes, its time to document and growl! Grrrrrrr...

  • Hi Teanna,

    How old is your daughter who has the same symptoms? Is she tested for HS/APS?

    Kerstin

  • She is 36yrs, (my eldest) she's had APS and had to have injections daily when she was pregnant (with both her children), then she was told a few months after that her APS has gone. She suffers with Fibromyalgia badly, her hands are really distorted, her hips are painful, she also has polycystic ovaries, and arthritis. My other daughter had underactive Thyroid also my brother. My mum has CIPD (I think that's the abbreviation), her muscles are very week, she can't feel her feet on the ground, and she has no releflexes anywhere, also she has Lupus, and had cancer in both breast and had a double mastectomy. Sadly my dad passed away but suffered with DVTs but when I asked for him to be tested for APS, the doctor said that the test was to expensive, I was livid as it don't, but they did not test him for it.

    That's my family's medical history, it's not the greatest, it's my eldest daughter that I worry about.

    I just feel I'm going around in circles, but have done for years.

    Thank you all for your advice, and let you know what is going to happen with this hand/arm etc.

  • Hi Teanna,

    I understand that you live in England as you have got dr Cohen. I have read what MaryF and APsnotFab say about your treatment and please listen to what those two experienced ladies say about your Drs and your, in many ways, bad treatment.

    As your daughter has the same illness you could see the same Specialist.

    As for your daughter you say that you were informed that APS was gone after her pregnancy. HS/APS NEVER GO AWAY. Never stop anticoagulation. Antibodies can go down in periods but later on show up.

    I do not believe she has got Fibromyalgia. You has told us you have Sjögrens also. You probably both have Thyroidea-issues together with HS/APS and you say your mother has Lupus. All these illnesses are often linked together and are mixed up by ignorrant and incompetent Doctors who do not know our illness and that we first of all have too thick blood that has to be thinned.

    I feel so sorry for your family with all these different illnesses and symptoms. You reallly need that different bloodtests that MaryF and APsnotFab talk about.

    Hope you can follow the good advices you have got from APsnotFab and MaryF!

    Have you read "Sticky Blood Explained" by Kay Thackray? A good book really. Kay has got HS/APS herself.

    Kerstin

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