I hope you are well, and your health has been as good as can be? And I've heard the weather has been very cold, I hope you don't suffer to much in the winter?
I have not had the time to follow nor read any posts at the moment. I've just got a new email address and username as my other phones and iPad had all gone wrong, they are up and running, plus my health went down hill with another PE, plus lots of Thrombosis, (d-dimmers), now Ostoperosis, started physio last week, my Thyroid has gone haywire, and I still don't understand the terminology of the test results, the TSH is 4.9 and the doctors want my TSH at 2. My GP is not a great help, and because Dr Hannah Cohen referred me to a Thyroid clinic, she is not interested, she wanted me to stay on 75mg of thyroxine, the clinic put me on 150mg, that's a big difference, but I'm still very tired and my eyes, although I've got dry eyes, ad those black spots, but the last couple of week, my worst eye has not what I call a snake, it's huge and looks like a snake but it gets worse if I'm reading on online or tv, so I try and rest the eye as much as I could, I must go to the eye clinic but with other appointments I've had no chance. So apart from that I'm getting there.
Seems like I'm going on but I'm not, I'm just bringing you up to date, if you know best I mean.
Kind regards
Tina
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Teanna
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Sorry you and your technology are doing a merry dance! Here you are again, do you want me to find your old profile for you, in case you want to read through your posts? Please keep in contact with your clinic, ie Dr Cohen and keep her up to date with any changes. as you clearly need close monitoring.
GP's are often not good with Thyroid issues, and do remember to keep an eye on your Iron, B12 and vitamin D also. Be aware also the Levothyroxine does not suit everybody, if they can't stabilize your thyroid levels, you may need other more detailed testing as the TSH does not show the whole picture, joining Thyroid UK on this platform is your best bet. Some patients take a D102 gene test to see if they are converting their T4 medication to T3, I pay for a multitude of tests privately as mine was not looked after either! MaryF
Thank you. Yes I am on Vit D, follic acid, but not on Vit B. But my GP is so reluctant on testing my blood just for the sake of it. The last one was just for my thyroid, but she does not seem to think about the APS. The blood test before I noticed that I had a very high count of white blood cells but when I ask I always fobbed off. I don't see Dr Cohen much now they have put me on Riveroxoban, maybe once or every 2 yrs. it just worries me that with all my other health issues, I wonder if they are all combined. I'm due to see my GP after a 2 mths waiting, she is the only GP that is aloud to see me and can give me my medication, no other GP is not aloud without her consent. I'm going to ask for a full blood test, as my health is really deteriorating and I'm getting to point we're I can't take no more. So I will see what will happen next week.
Again take you for your opinions, they are most welcome.
I have forgotten ....... where do you live? Also were you on Warfarin before Rivaroxaban and what INR did you have then. Was it dr Cohen who switched you to Rivaroxaban?
So you are not allowed to change GP if you do not get answers you want. Is Dr Cohen a Doctor who is specialized in Autoimmun illnesses?
When did you have your last PE and what do you mean with Thromboses, in which part of the body? Did you have Rivaroxaban when you had your "events" (thromboses or PE or ...)?
Many questions but I can not see your earlier questions as they are probably gone with your last name "Firefox".
Sorry for the delay getting back to you, again being unwell I find it hard to type now as I have joint problems with the fingers/hands.
I was diagnosed with APS after 2 bouts of DVTS & PE's. I did not get on with Wafarin then I was put on Fragmin for a year, then onto Riveroxoban (and lost most of my hair). The doctors, again put me back on Wafarin then Fragmin then Riveroxoban, and my blood is still not right. I also have under active thyroid which is driving me crazy as my GP and the Thyroid clinic clash.
As for the thrombosis, I have constantly have thombolisis, which hurt like mad.
I know you get dry eyes with APS, but mine has a name (I can't remember what its exact name is), would this be the dry eyes that comes with APS or something completely different?
I'm going to have to sign off as my hands are hurting.
Sorry, I had my last PE last year, and Dr Cohen put me on Riveroxoban. The thrombosis is in the calfs.
I live in North London, and I did try at one point to see if there was any groups about my area but I had no joy.
Myself, my daughter & brother have under active thyroid, but no one has APS. My mother has lupus plus a rare autoimmune disease CIPD (I think it is)? She has no feelings in her legs, so she has to look down to see where her feet are.
I am glad that you live in London and not in the US where it is exstremely difficult to find a Doctor who understands Autoimmun illnesses (probably a Rheumatologist) and who is specialized in those diseases. I am not sure you have that Doctor at present. It must be possible to change to another.
You really need a Doctor who knows HS/APS, Sjögrens syndrome (dry eyes/dry mouth) and finally who also knows Thyroidea. As said before they often go hand in hand and are like "cousins" so it is important to test all of them and from an Expert!
APsnotFab and Mary have given you info about how important it is with the different tests which usually are not done when testing Thyroidea-issues.
So get a Doctor who wants to cooperate with you and also make sure that your anticoagulation is properly controlled. I doubt that the oral anticoagulation (even if it is easy to take and give) is enough for you. I believe you neeed either Warfarin with a higher INR around 4.0 and the possibility to selftest (are you Lupus Anticoagulant positive?) or LMW Heparin.
Thank you for your help. I have got a doctor but she is set in her ways, but she is very helpful but I know that she don't know enough about my conditions. I did not know that APS and Thyroid go side by side, and my Under active Thyroid is all over the place. But I cannot say to my doctor this as she will say "don't always believe what you read", even when you get it from a greatource like this site.
I can hear that you have to look for another Doctor who is a Specialist of these autoimmun illnesses. A Specialist will know these things otherwise it is not a Specialist. Most likely it is a Rheumatologist as these illnesses are rheumatological diseases.
Also I can assure you that those special Thyroidea bloodsamples that APsnotFab and Mary talk about is very important to take.
As I live in another country you must find out about these things. Few people know about it so it may not be easy but you have to be firm and to insist on having the bloodsamples done. A Specialist who hears your family-history (important to tell him) will no doubt let you take them.
You are right, you know that and it must also be important for you and also for your relatives that you are well treated as these illnesses run i families.
Sorry for not getting in touch, but thank you for your help. The problem I have is that if I ask my GP for these persific test to be done, she would say (as I said to Kerstin), "don't read into sites online". Although she is a good doctor, but I don't think she understands the whole picture of my problems. At the moment she is more interested in my hands and lumps and skin changes on my arms (mainly). But I have asked for a full blood test but I noticed that it's just a routine blood including lipids, thyroid, and the normal ones.
I'm feeling so unwell, my hands are crippling up on me, so I will have to sign off now.
Thank you for being so understanding, it's hard when you can't get through to doctors (which they think they know it all). So when I'm due to go back for my results for my bloods, I will make a note of the tests of which apsnotfab pointed out.
My Thyroid levels came back normal, but when I asked her to test me for the other different thyroid tests, (and I did point out what tests there we're) she showed me the door and discharged me. I did try asking other questions, she said that she had no time and that my levels were all normal. I was totally upset.
I phoned my GP for the rest of my blood test results, (they always have given me them over the phone), but she wants to see me tomorrow.
I did (also my carer noticed) that every time I go out to the hospital or on a good day, shopping, the following day and sometimes the next (depending how long I've been in the wheelchair), my body ceases up, my joints hurt, my legs and feet are swell and my hands go into a spasm, distorted, especially my hands, thumbs and 2 end fingers. And the worse is fatigue, I'm incoherent. (Does anybody else get this?).
So I'm hoping that my GP has some answers because I can't cope with this pain anymore.
I went to see my GP for my full blood account etc, she said all was ok but she realised that she had a letter from my rheumatologist and he had diagnosed me with Osteoporosis then the second letter it also said that I had Osteoporenia (what is the difference plus I could not have a bone density test because I cannot lay down so they did they do a test on my wrist and the result was ok as far as she could tell but could not get a real reading. Can't they tell by a blood result result? I'm to scared to take the medication which the doctor has prescribed for it.
My eldest daughter suffers from rheumatoid arthritis plus Fibermaralgia, and she said that I was having all the symptoms and to ask my doctor about it. She said that it probably is, pains alll over, crippling pain in my joints, hands, heavy and painful legs I don't suffer with headaches but a foggy head if you know what I mean. It get worse if I have a day of continuous exercise, (which I mean by pushing myself around in my wheelchair, shopping etc), I am laid up for a few days.
With my thyroid, my GP said that it maybe that the thyroxine is to high but the hospital says differently, I need to ask to take the other test because I'm still getting fatigue, hoarseness of the throat.
I'm waiting still for the scan for the lumps on the hand/wrist, foot, (pins and needles). And also due to see the pain management team.
As you can see, I'm in so much pain, I just don't know what belongs to what, and my GP is going on guess work as things are getting so confusing.
Sorry to let it all out but I just don't know what else to do.
I wonder if Hannah Cohen (I have heard of her name I think) is a Specialist of Autoimmun illnesses like a Rheumatolgist or ev a Hematoligist? You live in London so it should not be too impossible to get a Specialist like it is in some states of the US.
You and your daughter both need help with this issues! You need a Specialist to get the correct diagnoses and treatment.
You have been referred to a Thyroid Clinic by Dr Cohen I read and what did that clinic do: did they not take the necessary tests Mary always talk of? It is important that your Thyroid is well managed I have understood here.
As you also have dry eyes you might have Sjögrens syndrome and Thyroidea and APS/Hughes go together with eachother sometimes.
You need help from someone who understands that there are several things that are probably linked together and who understands those things and also that we need a proper anticoagulation for our HS/APS.
I got nowhere with the thyroid clinic, and it was Dr Cohen who referred me to her. The Doctor at the Thyroid clinic just looked at the results (which my GP had requested), these were the basic TSH and the T4, nothing else. She had absolutely no time from me and I don't think she even realised that it was my GPs request form, plus she could not be over 28ish, she treated me like a slab of meat, I must of been with her all but 5mins. She also discharged me. I wanted to also tell her (which it never crossed my mind until last Friday, I get very course voice, it's as though I can't swollow properly, it can last for days, also these foggy headaches, it's not an actual headache but it still aches.
Again it was my daughter telling me what to do, (re; fibermergia (not sure if I spelt it right, sorry). And it actually worked, apart from my other health issues.
I don't see my GP again, I'm seeing the pain manager clinic, plus I'm still waiting for a scan on my wrist and foot where I have lumps, plus I have these red kind of blisters that has started to appear mainly the upper region, and my face.
I really are at the end of my wits. I really don't know what to do. I suppose I will have to wait to see the pain management team, I shall write a list. My doctor is on holiday for a month now, so I have no other GP that is aloud to give me any medication etc until she returns.
Hi, if I were you I would list all your issues at the moment, including your concerns. Then I would ring Dr Cohens secretary at UCLS, explain whats happened and ask for an urgent appoitment. If that doesnt work, ask the secretary for her email address so you can write to her, the secretary can then print off and put on Dr Cohen's desk.
Thank you for your advice. Dr Cohen did get the ball rolling when all this started and put me with the right doctors. But as we all know, there are to many chiefs and not enough Indians and to many people got involved and I was then left to sort things out and with my short term memory (which I never knew it was one of my problems), I had not wrote all things down. I shall ask my GP for all my letters and then approach Dr Cohen.
Thank you very much for your advice it's much appreciated.
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Professionals whom don't understand.
Sicca/ Sjögrens interpretation and council? 
Very unique APS situation.
Gastroparesis (slow stomach emptying with pain)
Those on Warfarin... How often is your INR tested? Also, what are the other blood thinning options?
