I have a question about my immune issues related to the the rest of my problems. I have low lymphocytes on last blood test.......

[Agapanthus]

I have a CFS diagnosis after my hypothyroid one (hypo 17 yrs on T4, CFS 7yrsish). I have been trying to address the myriad of related issues for last few years..... working on adrenals and thyroid, and gut and diet and just trying to work out the puzzle and how to improve my health.

Through it all I have this feeling almost constantly of viral attack especially in the winter. I have only just recently had a blood test that showed low lymphocytes as well as low platelets. I did a search on here, and came up with the fact that the low lymphocytes indicates autoimmune problems. But with most hypothyroidism being autoimmune, wouldn't this be true for most? Incidentally my GP remains unconcerned about both results being low......

I have had autoimmune stuff in the past (notably thrombocytopaenia in pregnancy a long time ago and more recently Lichen Planus. However I have been using Low Dose Naltrexone for a year in the hope that it would help with these issues, and certainly I haven't had another LP incidence since I started.

I just feel so lousy feeling ill all the time, and so quite apart from the thyroid/adrenal issues (on T3 trial for the former, and CT3M for the latter, just 6 weeks so far), I am not sure what else I can do? Or would these help to address this issue too?

[Lucky23]

Hi, I can't answer your questions, but notice you had Lichen Planus and are taking Naltrexone. Do you buy this yourself or do you have it on prescription from your Dr I have had Lichen Planus for the last 4 months, the creams I had from my Dr don't seem to work.

Do you know if LP is connected with Hypothyroid?

Thank you

[Agapanthus in reply to Lucky23]

I don't know for sure if LP is connected to Hypothyroid but I suspect that it can be, since LP is generally seen as autoimmune, and hypothyroidism usually is. I was told by the oral surgeon who saw me with LP that if you have one autoimmune condition (ie hypothyroidism which I already had) then you tend to get others.

Sadly, no, I don't get Low dose Naltrexone from my GP, though I did ask her at the time. I pay for it, via a private prescription, and even worse, I cannot tolerate the liquid form so have to use the transdermal cream which is even more expensive.

Frankly my LP hasn't been too bad even before using LDN, and the effects of the other issues I have are far worse. I did have a very bad bout of the LP at the start around 2005, but since then it's been mostly in my mouth. There was an interesting spike in my TSH level at around the time it started (ie TSH shot up beyond range) which makes me think it's related to the thyroid for me at least.

[Lucky23 in reply to Agapanthus]

Thank you for your reply. It is interesting that your TSH shot up with LP. In December my TSH was 0.98 and in March my TSH was 2.88 so could be even higher now!

I have an appointment tonight with my GP, so hopefully she will increase my dose. I am only on 75mg at the moment.

Thank you

[Hidden in reply to Lucky23]

I think it is another autoimmune condition. I had lichen plans in my mouth before I was treated for hypothyroidism.

[Lucky23 in reply to Hidden]

Hi I have it in my skin, I haven't had it my mouth and hope I don't. It must be painful having it there.

[Hidden in reply to Lucky23]

It Was!!

[shaws]

Do you have your latest thyroid gland blood test results that you can post here, complete with the ranges. You may not be on enough thyroid hormones.

This is one doctor, among quite a few, who believe we are undiagnosed or prescribed too low a dose with the reliance on the TSH instead of clinical symptoms and keeping us within a range thus resulting in other problems.

worldthyroidregister.com/Go...

This is an excerpt from another link although I know you were diagnosed years ago.

If you’re new to the use of thyroid hormone, and you’re up to a dose that should be working for you, but you’re not benefiting from it, be sure to let your doctor and your pharmacist know. The dosage range that’s safe and effective for most patients is between 2-to-4 grains (120-to-240 mg) of desiccated thyroid. The equivalent dosage range for T4 is 200-to-400 mcg (0.2-to-0.4 mg). If you’re not improving within this dosage range, you may have thyroid hormone resistance, or the potency of the tablets or capsules you’re using may be lower than what’s stated on the label.

web.archive.org/web/2010122...

[Agapanthus in reply to shaws]

Hi there Shaws and thank you. Yes I am aware of the issues re TSH and have been background reading for a while to see if I can improve my symptoms via non mainstream thinking route.

I managed to get a referral to an endo in Dec 2012 on the basis of my low T3 result (which I had to do privately), and this endo was happy to try me on T3/T4. Sadly I felt worse, and then the same.... but probably not enough T3 or maybe Reverse T3 issues which were not tested.

Before I started the T3/T4 treatment these were my results... by this time my T3 had gone in range though...this was on 100mcg T4 (mostly for 17 yrs apart from a couple of yrs 125mcg. When I was on 125mcg I was feeling overdosed once I started on LDN)...as you can see, my blood results are good.

TSH 0.04 (0.35-4.5)

FT4 18.6 (10.5-26.0)

FT3 4.6 (3.9-6.8)

After this I decided to ask if I could try T3 only, and the endo agreed but put me into the care of my GP as long as she agreed, which she did. I am 6 weeks in to the trial, as I said, and now up to 32.5 but gradually adding in more, slowly but carefully as the T4 leaves. So far my BP (usually low) has improved, and my temp seems better generally, but the immune issues are pretty bad thus far.

i am using all the recommended vits/minerals and have a clean diet. Not sure what else I can do, and I am scared that I have issues that are less easily addressed re the autoimmune stuff.

I will try NDT as a last resort, but am trying T3 as it's free!! I pay for my LDN and all the rest of the stuff I use.

[shaws in reply to Agapanthus]

I do hope your trial on T3 will work for you as it makes an enormous difference when you begin to feel well again. You are having some improvement already and I hope your other immune issues improve too.

Best wishes

[Agapanthus in reply to shaws]

Thank you Shaws. I am seeing a private Dr next week in London who I hope may be able to join up some of the dots for me. He isn't a thyroid specialist though.

[Hidden]

Your question caught my eye because you mentioned low lymphocytes. My daughter has had the same problem for years and like you has talked to doctors about it. They were all unconcerned. She however has been concerned about all of the viruses she catches that stay with her for months, and under those circumstances you would expect that white blood cells would be rallying to deal with them - they haven't!

To cut a VERY long story short, on the advice of another user of this site we bought a book called On Hope and Healing by Dr. Neil Nathan and have been to California to see him. He carried out a raft of tests and discovered 6 different and serious things wrong with her, none of which she had been tested for here, and she still has a very low white blood cell count.

Can I recommend that you obtain Dr. Nathan's book. It truly was a revelation to us and has given us a real insight into how and why her endocrine system failed.

Jane x x

[Agapanthus in reply to Hidden]

Thank you very much for the recommendation of Dr Nathan's book. I had heard of a number of US specialists, but not this person, and I can see that his book is recommended by 2 people on Amazon.uk site.

I am so sorry to hear of your daughter's plight, and it's shocking to hear that this man could find and test for so many things that our medical people ignore. However as a long term sufferer of ME/CFS I know this is true. I am sorry that she still has a low white blood cell count - does this mean that Dr Nathan was unable to help her?

[Hidden in reply to Agapanthus]

He is helping her to tackle all of the problems he discovered except for one for which there is no known cure. Her lymphocytes were low in the tests he gave her. He is now treating her for systemic toxic mould (for which there is no test here), 2 stealth viruses (one of which she has probably had since she was a baby - she is now 33) and Lyme Disease, as well as rebuilding her immune system and methylation cycle both of which were way off the reference range. It will be a long job, but she has been waiting for over 20 years for some answers, so we are very optimistic. Jane x

[Agapanthus in reply to Hidden]

I wish your daughter well with her treatments then Janeb.

Sadly I am old and not got enough $ to go out to the US, but I have been doing a lot DIY picking up info here and there, and I have read about the methylation cycle along the way.

I am seeing a private Dr in London next week who is next to Biolab so he will probably ask for some tests, but as you say, the tests are very limited here.

[Hidden in reply to Agapanthus]

Hello, Thank you. I do feel that at last there is someone willing to look outside the box for her.

If you can get hold of a copy of Dr.Nathan's book I would really recommend it. Ask your doctor if you can get a Nagalase level test.

gc-maf.de/en/home/40-nagala...

These tests are available in Europe - Holland I think.

gcmaf.eu/info/index.php?opt...

gcmaf.eu/info/index.php?opt...

Dr Nathan's book might also suggest other areas that you could discuss with your doctor.

I wish you lots of luck. Jane x x

[MaryF]

Hi there with the history of thrombocytopaenia please do check out whether you have SLE Lupus. as sometimes this can be indicative, also Hughes Syndrome, it can be a manifestation of one or both of these. Hughes syndrome often goes with thyroid and sjogrens and at times Lupus also.

The tests a doctor would need to conduct are:

Anticardiolipin antibodies (aCL)

Lupus anticoagulant (LA)

Anti-beta2-glycoprotein-1 (anti-B2GP1)

and the test for Lupus: nhs.uk/Conditions/Lupus/Pag...

Basically you can have this panel of blood done all in one go, and I would just tor rule it out. My daughter has Lupus, and she has had similar incidents as I had had also myself. You have nothing to lose by doing them.

Mary F x

[Agapanthus]

Thank you Mary.

I will check these things out, though I think Lupus is unlikely as I don't really have the other more obvious symptoms, though I understand it's often difficult to diagnose. For example, I have very little pain with my ME symptoms, unless I get hypothyroid.

Also re Hughes syndrome, I think it's a disease of blood clotting too easily from what I have read and as I have Low Platelets, that is the opposite problem.

[MaryF in reply to Agapanthus]

Yes, it is a long shot but you can have low platelets and still have hughes syndrome or and lupus... often gets missed, best to be on the safe side xx MF x

[MaryF in reply to Agapanthus]

ps: example explained in this paper: uptodate.com/contents/the-a...

MF x

[Hidden in reply to Agapanthus]

Hi I didnt know i had APS untill i was admitted with a pulmonary embolism at the age of 40, so get tested for whatever you can, ,x x x

[MaryF in reply to Hidden]

Yes naughty old Hughes Syndrome, as it is mainly called in the UK.. can be hard to pin down, glad you got the diagnosis! Mary F x