This is probably a strange question, but first, some history so you understand why I am asking.
In June 2014, I was diagnosed with Hypothyroidism and started on levothyroxine (brand name Tirosint). Some time later I added in Slow-Release Thyroid Extract (T3 only).
In July 2014, I was diagnosed with mild lupus (strong positive anti-dsDNA) and started on Plaquenil.
In Sept 2014, I was diagnosed with Sjogren's (strong positive SS-A(Ro) Ab ) in addition to the lupus. Meds didn't change as I was already on appropriate treatment.
Only recently, I was tested for Hashimoto's.
My results were:
TPO-Ab: 3 IU/mL (<9)
Thyroglobulin Ab: <1 IU/mL (< or = 1)
TSI: 41% baseline (<140)
So, it would appear that I am negative for Hashi's BUT I've been on Plaquenil for 9 months and never got tested prior. Could the Plaquenil cause a decrease?
For the last month I've been feeling VERY fatigued and suspected either thyroid over-medication OR under-medication. Endo said to slowly increase the Slow-release Thyroid Extract (T3) - which I did in increments over the course of two weeks - but really didn't see any change (didn't improve, didn't really get worse but maybe??). All I know is I was still VERY fatigued and unmotivated to do ANYTHING.
Having had enough, for the last two days I STOPPED taking the slow-release T3 as well as the levo and I'm feeling more normal (even hubby commented). I understand the levo change probably isn't affecting me yet as that takes time to be flushed out of your system but I do know that changes from T3 intake is seen/felt fairly quickly. So, hmmmm. Just this morning I put in a request into my endo to test TSH, FT4, FT3, RT3, Vit D, Vit B12, Folate, Iron, and Ferritin so that we can figure out what is going on.
This all just seems so strange to me. So, either I have been over-medicated, OR perhaps I never was really hypo at all OR perhaps I did/do have Hashi's and the Plaquenil is keeping it in check so I no longer need thyroid meds? Or, simply, just don't need T3?
So confused.
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milkwoman
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Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.
If I have understood you correctly, you have been diagnosed with "mild lupus" which is also know as Sjogren's Syndrome. The name, "mild lupus" is really poor in that it suggests that a patient is not suffering, which is not the case. More recent understanding of SS can be found at our other website, the details of which are below.
If you were diagnosed with hypothyroidism, this must have been based on your blood tests? Hashimoto's is an autoimmune disease, like lupus. It does seem curious that you were given Plaquenil but not tested for Hashimoto's - however, I am not a medical doctor and in my opinion, I think you need to see a specialist in lupus. Rheumatologists are not necessarily expert in lupus. Indeed, some have never treated patients with lupus. You need to see someone who will take overall charge of your care. It is fine to be referred to an endocrinologist who deals with thyroid, but you also need the lupus specialist to take charge of your overall care to see whether you have a thyroid problem and whether this is also autoimmune. It is disappointing that you, the patient, is having to do the job of a doctor!
You are being treated with hydroxychloroquine (Plaquenil) which is the standard drug used to treat lupus. It is an anti-malarial. This drug has nothing to do with thyroid.
You do need answers by a specialist. I would never recommend stopping any prescribed drug without the knowledge and approval of your doctor. Nevertheless, I find it interesting that stopping the levo has made you feel less fatigued and better in yourself. I therefore urge you to discuss this as soon as possible with the doctor who has prescribed this drug. I do not know where you are situated, whether you are in the UK or elsewhere.
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I know of one Member who also has had difficulties with her thyroid and her medication, so you might find you will be able to discuss this with other people.
I have both lupus AND Sjogren's (I have positive markers for both). Lucikly, I am under the care of a rheumatologist who is knowledgeable with lupus, so no worries there.
I found a link to a clinical trial that is seeking "The Effect of Hydroxychloroquine Treatment in Hashimoto's Thyroiditis". Part of the study was to see the effect, if any, of the drug on anti-TPO and Anti-thyroglobulin antibodies:
So, this got me thinking that I should ask the community if anyone out there who has Hashimoto's in addition to lupus or Sjogren's or any other AI disorder and are being treated with Plaquenil if they've experienced a reduction in their antibodies.
Before the AI diagnoses, I was diagnosed with hypothyroidism by a private endocrinologist. He is fantastic and has agreed to order a full thyroid panel so that we can better understand what is happening with me currently. He is aware that I've momentarily stopped my meds. He applies a "functional approach" when it comes to treating Hypothryroidism and listens to his patients and their symptoms (a good thing). The testing is more for me so that I can get a full snapshot and figure out if I need to add in a small amount of T3. I fear I'd been going in the opposite direction and taking too much. My cessation of symptoms seems to confirm this. However, this momentary lapse may not last if I indeed need SOME T3 to function. I have been experiencing some minor eye twitches in my right eye only over these last three days - something I've not really had before - and from what I've read, that could be a result of stopping the T3/levo. My dosing of levo is very small: 0.25mcg - 0.50 mcg. I understand that treatment and meds for hypo is not the expertise of this group - I simply wanted to explain.
It is not uncommon to have more than one autoimmune condition and some families have more than their fair share of autoimmune conditions. However, it is in your best interest to have one doctor who takes overall responsibility for your care. This does not mean not having an endocrinologist, but that there is one doctor who has all the data from all your doctors, so that there is someone with an overview of your care. I think this is very important.
This is, of course, only my opinion and the decision must be yours to make.
Yes, there is a family history of autoimmune disorders, all over the map. I am the only one with SLE and Sjogren's. I also now suspect I have APS and need to speak with my current rheumy about it.
I have a GP who, in general, is VERT good (been seeing his practice for over 20 years). BUT, neither he (nor the endo he referred me to) believe I am hypothyroid as they only go by lab numbers (they only test the minimum and mine are always "in normal lab range") and not symptoms (I see a private endo).
The GP does know about all the specialists I am seeing (endo, rheumy, gastro, heme, ophthalmologist, and a sports med doc for tendonitis), and he does have the overall picture (I am very honest with him), so that is good. However, what I have found is none of them want to take control over everything - it is just the way it is (I am in the U.S.). So, I keep excellent notes, have copies of all my records and educate myself as best I can. I take as few meds as I am able to function with and ask tons of questions about my treatment.
I am so very grateful for all the communities and wonderful souls on HealthUnlocked. I have learned a TON in a short amount of time being here.
I wondered whether you are in the US and clearly there are differences. I think you are right to "take charge" and collect and collate all the notes and data you need. You, therefore, become the expert on your body.
At the same time, you are the one who is ill and need someone who "cares for you". While this usually refers to the physical, there is also the emotional/psychological. Therefore, if you need to talk, I am here.
Aw, Ros, you are very sweet. Yes, the emotional/psychological aspects are overwhelming at times and only those going thru it can truly understand the frustrations of simply not being well.
If you need to talk at anytime, you can contact me at the LuPUS Message Board (details above). No one can "cope" all the time - this is not humanly possible!
Thank you, Ros! It has been a particularly aggravating day (endo did not order the tests I asked for so that I could "get a complete picture of my thyroid" even though he SAID he would but then went and did what HE wanted anyways which meant a complete waste of time for me - arrgh!).
So, I am now in "rethink, reevaluate and create a new plan" mode.
It does seem that in the US, no one wants to take charge of all the symptoms. To me, it also seems that even though a physician refers you to another physician in the same network, he/she does not get the benefits of the documentation when you see the 2nd physician. The electronic records were supposed to "talk" to each other. I don't believe they do as each subspecialty chooses its own computer program. E.g., I was sent to a shoulder surgeon. I have yet to find his notes in the larger record. Also, there was an x-ray and an mri. I have yet to find either or a written summary of either in the larger chart.
So true! AND, you end up having the SAME conversation over and over again with the different specialists as they look at you like they didn't know you were seeing so-and-so for insert-condition-here.
I come soooo prepared to every apt - medical history in hand, list of docs I see, consolidated table of test results, list of meds/supplements, etc. and I STILL have to correct the information they have for me in my file. When will they get it all together?
I keep wondering why they get paid so much. I worked in Community Mental Heath for about 20 years. I was so careful about diagnoses, supporting documentation in the correct section of the chart, etc. I even read the Psychiatrist's note. They seem to speed thru the chart so fast and they only look for certain things, blood tests they ordered, current complaints. They may look at the BP. Then I get reminded to see my eye doctor and a notation is made for a complicated visit and a mark indicates how many months and what blood work to come back with. I have also seen "provided education" and not been able to figure out what he was considering education.
Going in with the information you provide, you should get paid for doing the physician's job.
There should be some sort of strike or organized action we can take. I'm going to think on that one.
It does seem that "YOU", the patient, has to take full responsibility for yourself ie to have compiled all the notes, blood tests, scans, etc for each physician. This, IMHO, is poor service. No one is taking responsibility (is this a legal issue, a protection from getting sued?) for you - yet "YOU" are the patient in need of being cared for and cared by the very people to whom you have come to get that help and support.
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