Thyroid - Lupus Link ???

[scrummy]

Hi,

My mother had SLE a form of Lupus and is no longer with us :o(

I did not get the opportunity to know my mother and am not aware she had a thyroid problem. It maybe that it was not diagnosed or maybe she did not have a problem. I have no way of knowing or finding out.
My aunt has fibromyalgia (my mothers half sister and hopefully I spelt fibromyalgia correctly!) which I am told also have similar symptoms.

I was recently told by a friend that they are all linked. I realise both lupus and hypothyroid complaints are auto-immune but did not realise that they are linked. She also told me that people with Lupus often have symptoms that are mistaken for being hypothyroid.

Does anyone have any knowledge about this?

I have had a period where I have been feeling really well, my blood test came back within normal ranges (although, only just) and I felt my dosage was almost right and then suddenly I ham exhausted again, the chronic hip pain is back and I feel so so cold.

Is it likely that I also have lupus too?

Any thoughts, ideas, suggestions will be appreciated.

[Nancy LC]

I haven't heard of any link other than people with autoimmune diseases tend to get other autoimmune diseases slightly more often. You might want to read the FAQ to get acquainted with how you can get your hypoT treated. Good luck!

[wcollier]

Hi Scrummy:

Like Nancy, I'm only aware that people with one AI disease are prone to others. In that sense, HypoT and Lupus are related.


I have had a period where I have been feeling really well, my blood test came back within normal ranges (although, only just) and I felt my dosage was almost right and then suddenly I ham exhausted again, the chronic hip pain is back and I feel so so cold.


If your labs are barely normal, I'd focus on getting them sorted out. Are you consistent with the timing of your meds around estrogen supps, iron, calcium, fiber supplements etc? These things can affect absorption. How long have you been on thyroid therapy? Are you still adjusting to your optimal dosage, explaining why you get better and then need more hormone? Maybe you get thyoid resistance? These are some of the things I'm wondering about.

As for Lupus, I just read that you must have at least 4 of the following symptoms to diagnose lupus.

http://www.hamline.edu/lupus/articles/symptoms_of_lupus.html

THE ELEVEN CRITERIA USED FOR THE DIAGNOSIS OF LUPUS


Criterion Definition:

Malar Rash Rash over the cheeks Discoid Rash Red raised patches
Photosensitivity Reaction to sunlight, resulting in the development of or increase in skin rash
Oral Ulcers Ulcers in the nose or mouth, usually painless
Arthritis Nonerosive arthritis involving two or more peripheral joints (arthritis in which the bones around the joints do not become destroyed)
Serositis
Pleuritis or pericarditis
Renal Disorder Excessive protein in the urine (greater than 0.5 gm/day or 3+ on test sticks) and/or cellular casts (abnormal elements the urine, derived from red and/or white cells and/or kidney tubule cells)
Neurologic
Seizures (convulsions) and/or psychosis in the absence of drugs or metabolic disturbances which are known to cause such effects
Hematologic Hemolytic anemia or leukopenia (white bloodcount below 4,000 cells per cubic millimeter) or lymphopenia (less than 1,500 lymphocytes per cubic millimeter) or thrombocytopenia (less than 100,000 platelets per cubic millimeter). The leukopenia and lymphopenia must be detected on two or more occasions. The thrombocytopenia must be detected in the absence of drugs known to induce it.
Immunologic Positive LE prep test, positive anti-DNA test positive anti-Sm test or false positive syphilis test (VDRL). Positive test for antinuclear antibodies in the absence of drugs known to induce it.

[scrummy]

Thank you to you both for your reposnse. The link was very useful about lupus, it was far better than anything I found for myself.

To answer your questions:

I am consistant in taking my meds, although I am not taking any supplements. What do you suggest would be useful initially?

I have been on thyroid treatment for almost 1 year. My results from my test are as follows including lab ranges.

July 2004
T4 12.6 (Lab range 9-19)
TSH 9.25 (Lab range 0.35-4.94)

October 2004
T4 13.8 (Lab range 9-19)
TSH 5.7 (Lab range 0.35-4.94)


March 2005
T4 13.2 (Lab range 9-19)
TSH 4.68 (Lab range 0.35-4.94)
T3 5 (Lab 3.25 - 6.21)

I think I must be still adjusting to the meds as everytime I increase I feel better and then seem to drop back down to feeling lethargic and unmotivated etc. Or is this the thyroid resistance you mention?

I started on 25mcg of levothyroxine and then increased gradually to 125mcg. On my last blood test I was taking 100mcg and when the results came back within normal ranges I was informed my the doctors staff that no change was nescessary.

However, I put in a prescription for 125mcg and they issued the higher dose without question. I felt I needed more as I was just within normal range and I also feel these things should work on how you feel not on what a test result says!

Also, I must add that my doctor did originally say that my TSH should be about 1.00. But now I am within normal ranges they don't seem to worry about it, although I still don't feel on form most of the time.

I don't know if I get thyroid resistance. What are the implications and what can I do?

Thank you so much for your support and your time xxx

[Nancy LC]

Your TSH isn't even within normal range. If you read the FAQ it describes that the range has been lowered to 3, at the highest end.

You're also taking synthetic T4 which lots of people never feel that great on. Most patients seem to prefer either natural thyroid or a combination of T4 and T3.

I think you're going to have to push your doctor a bit or change doctors if they won't take your concerns seriously. The FAQ can get you started on finding the right help and of course, we're here to answer any questions.

[wcollier]

Hi Scrummy:

As Nancy says, you definately aren't optimized with that TSH. If your doctor's happy with your current treatment, you may need to seek out other advice. Are those Free T3/T4 tests or Total T3/T4?

[scrummy]

Thank you again to you both for getting back to me:o)

I have no idea if the results are Free or Total.
It was hard enough getting any T3 results to be honest.
In order to get the T3, the doctor stated she had to specify a reason why she needed it and asked me to write "Poor Control" on the blood test form.
I am no wiser for requesting it anyway as I have no idea what my T3 result indicates. I was just told that it was normal.
However, on the form it just said T3 so I would imagine that it is Total and not Free as surely it would read FT3?

Personally, I am concerned that my T4 has dipped as between tests my meds were increased!

I have an appointment scheduled for next week at my doctors surgery but I do not know who the doctor is as I never seem to see the same one. I intend to ask for an increased in meds and a change to natural thyroid treatment. If my doctor is unhelpful or reluctant I will request to be referred to see a thyroid specialist.
Although, I will discuss this in a tactful way as when I mentioned this before I was told that only people with overactive thyroids get referred to see specialists.

I remember someone mentioned on the forum that Thyroid-S was available in the UK. I immediately asked my pharmacist if he could inform me about Thyroid-S and he told me that Levothyroxine was more natural. Does Thyroid-S go by any spcific name?

Armour is not available in the UK so if anyone from the UK is reading this, please can you reply with the name of the manufacturer or brand name of a natural thyroid med so when I ask for a change in meds I can politely mention that name to the doctor at the time.
I will also get some information about the medication direct from the manufacturer so that I can be prepared for any unreasonable resistance.
I believe that I need to be as informed as possible before I go to the GP as information is power!

Just the name will be enough and I will locate the information on the web and take it along with me.

Thanks again :o)

[wcollier]

Hi Scrummy:

You might want to post your specific questions about Armour availability as a separate thread in case people from the UK don't catch this post.

My personal opinion is that you shouldn't be looking at labs, but going by symptoms. If you're still feeling hypo, you need an increase. Increase until you feel better, right? It seems so logical, yet it's completely ignored by doctors. Who gives a flying leap what the lab says, especially when thyroid resistance is a concern. My labs show my T4 levels in the hyper range, but I don't feel hyper. It's a good thing my doc goes by symptoms, or I'd be yanked back on my meds.

Thyroid-S is also what is used in Canada as opposed to Armour. They are the same thing, natural dessicated thyroid. Your pharmacist is wrong, synthroid is synthetic, not a natural thing about it. Not to say that Synthroid isn't good, I'm someone who did better tolerating synthroid, but it's definately not natural.

Being that you are in the UK, I wonder what the process would be like to consult with Dr. Peatfield? Have you read his book? It's THE BEST book on thyroid I've read. Anyway, he does consults even though he can't prescribe. They threatened to take away his license b/c he went against the norm of TSH and synthroid (and God forbid, helped his patients).

Here's the link if you're interested:
http://www.baronsdownpublishing.com/book.htm

[Natrushka]

I'm just chiming in on how great Dr. Peatfield's Book is. If you can't get to see him, get his book - you'll be greatful you did.

[scrummy]

Yes, I will post a separate thread about the Armour availability in the UK shortly.

I think I'll buy the book AND try and get to see Dr Peatfield if at all possible.
I just found some contact details for Dr Peatfield and its only 1 hour away from where I live!
I'll keep you posted.

Thanks for the fabulous help!

[wcollier]

OMG Scrummy..... that is so exciting! Please, please keep us updated!!

[scrummy]

Yes, I am so excited and a very, very nervous too!

I have just spoken to Dr Peatfield and have scheduled an appointment to have a consultation with him next week!

We had a talk on the telephone and discussed a brief account of my health and thyroid problem so far, including possible future treatment options.
He also mentioned that it is a possibility that I have some adrenal damage which may need treating.

He said he will send me directions, some information and a questionnaire to complete before my visit next week.

He said that he is almost certain he can help me based on the information I have provided so far.

I hope it will be money well spent.

Please cross your fingers and toes for me and wish me luck.

[Natrushka]

Oh man, Scrummy, I'm so jealous! I think you hit the jackpot with Dr. Peatfield!

[wcollier]

Hi Scrummy:

Am I as excited as you are? Jeez, I feel like jumping up and down. I can guarantee you won't be disappointed, if he's anything like his book.

I'm also on Cortef for my adrenals and the difference has been phenomenal.

Good luck!

[bearbear]

hypothyroidism caused by Hashimoto's is definitely linked to Lupus. I was dx'd with Lupus 9 yrs ago and last month dx'd with Hashimoto's. Both are auto-immune disorders and it is very common to find both occurring in one person.
btw, celiac disease is also linked. And yes, I was just dx'd with that too. thankfully low carb has provided me with everything I need to get my health back on track. Sadly I cannot eat any low carbs foods that may contain even minute amts of gluten but that is ok w. me !!

fyi, my mother also had SLE and Hashimoto's - she passed away 9 yrs ago (shortly after she died, within wks, the stress brought about my Lupus symptoms and it was then that I too was dx'd).

[scrummy]

Thank you for your post. It is very interesting.

When I mentioned the auto-immune disorders in my family Dr. Peatfield said that it may turn out that I have Hashimoto's!

How are you managing to cope with these diseases?
What sort of medication do you need to take?

Did your mother have SLE for a long time? Also, which came first the SLE or the Hashimoto's?
My mother was ill from when she was 10 years old and then she died at 27 years old. I believe that despite her long illness SLE was only diagnosed a few years before she passed away.

I am looking forward to seeing Dr Peatfield even more now!

[scrummy]

Just need to vent! I am shaking I am so upset.

I have just spoken to a doctor at the surgery over the phone where I go and I asked to increase my meds.

She said that I am already overactive and completely read my results wrong and argued for at least 2 mins that I was hyper and not hypo and should'nt be on the dose I am!
After trying to put my point across I just decided to be silent and let her finish.
She stopped at my silence and then finally the penny dropped and she saw sense and realised that she had read the results wrong!

She then apologised and said my results are fine (see results and lab results posted above) and that I am doing well and don't need to change as they are within normal range. She was at this point ready to terminate the conversation.

I then explained that I don't feel well. I then explained that although my results look okay I feel awful and think that I need a higher dose. I also said that originally my own doctor (who is away and I can never get to see her anyway) said that I may need to get my level to around 1 to feel well. I then (bravely) said that on the thyroid grapevine it is felt that a smaller lab range is actually more accurate for assessing thyroid conditions.
I then delicately explained that not all lab ranges represent true health and then tried reverse psychology and explained how I was reluctant to start taking meds when I was first diagnosed.

This worked she lectured me on having to take thyroxine for the rest of my life and then she agreed I did need more and I got a script for 150mcg.

(Should I really have to play this doctor and use mind games to get what I need?)

She wants me to have a blood test in 8 weeks and we will thrash any further increase out later. (So on top of feeling like I do - I now have to cope with the anxiety that everytime I need medication I have to fight for it!)

I then asked how would she feel about prescribing me natural dessicated thyroid and she said it is not something she believes in!
Funny that, as it's not as if I am not asking her to take it!

I also asked her specific questions about my condition and she admitted she did not know much about it!
She also said that I am taking a natural hormone, albeit one packaged up as a medication!
Finally, when I was discussing my results she said that the only result she is interested in is the TSH.

How on earth am I supposed to get well with doctors like this?

Although, at least I now know where I stand and can see that if I want to get better I need to see other doctors - right?

Thank goodness I am going to see Dr. Peatfield next week. PLEASE let this work for me.

[Natrushka]

It will work, Scrummy. Dr Peatfield is one of only a handful of doctors who truly understands thyroid. Dr. P knows all about TSH and how rotten it is - hell, he isn't a fan of ANY blood test.

N

[Nancy LC]

How on earth am I supposed to get well with doctors like this?
You can't. :(

Although, at least I now know where I stand and can see that if I want to get better I need to see other doctors - right?


Bingo! Nat is so jealous of you getting to see Dr. Peatfield, I can see the green glow from here.

[Natrushka]

Nancy's a mean one when she's starving, isn't she?

[Nancy LC]

LOL! Ok, well I fess up. I'm jealous too.

Its pretty bad when you have to take a trip to England just to see a competent doctor. Wait... maybe not if I could use it as a medical expense write off!

[Christal]

Are there any "Dr. Peatfields" stateside?? :)

[Natrushka]

Yes. There are a few, in Mass there's a Dr. Wedda (http://www.personalbestpersonaltraining.com/bev_wedda.html) that a few people in the area see. She's on the top doc list and she treats with Armour. She also treats adrenals.

[scrummy]

Righto!

I have just got back from my consultation with Dr Peatfield (he's a really warm funny man - I liked him very much)

I was very nervous, but should not have been as he was wonderful and easy to talk too.

I will post separately about my visit and the agreed treatment plan as some information Dr Peatfield gave me touches on available treatment in the UK and specifically Armour availability in the UK so as it was suggested to me before it may prove useful to make this part a separate post to help people in why have specifically looking for this type of information.

BUT before I do I wanted to add some final information to the Lupus/Thyroid query.

Considering my family history Dr Peatfield suggests that it is likely that I have Hashimoto's. He feels my symptoms are not typical of Lupus. He is interested in why I have become hypothyroid and generally feels its nice to know the original cause.

I have agreed on my next blood test to see if I can also get my thyroid antibodies checked and will feed the results back to him.

[Nancy LC]

Excellent! Wow, you got in to see him quickly. Looking forward to reading your report.

[scrummy]

I sure did get to see him quick! I called at the right time and I guess I live in the right place too!

I have posted a few details about the consultation here:
http://forum.lowcarber.org/showthread.php?t=252531

I felt very isolated before and I do hope that if anyone else who reads my post will feel hopeful too.

I feel more positive now and am very grateful to all you guys for the pointers and tips.

A genuine huge THANK YOU to you all.