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  • #458321
    Linda L
    Participant

    I had a malaria-like attack last night. It happened when I went to bed 10 minutes later. Suddenly I felt very, very cold /temp. in the room was 24C/
    All my body was shaking /teeth as well like crazy/ All my body, every bone and every muscle were so painful. I couldn’t move. My family tried to warm me up but nothing helped. It took about half an hour. Now when I think about it I realize that it happens to me twice a year but I was always sure that it was due to the cold weather. First time what I remember, it happened when I was 18-19 years old. I have read everything what was written on our forum about malaria. I’ve never had malaria. My mother had. I’ve never paid any attention to it and never told any doctor about it.
    Does anyone of you have such symptoms?

    RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
    AP from April 2014 till August 2015. No luck.
    Current medications: Natural thyroid, Mobic, supplements,
    vitamins and minerals.
    MTHFR heterozygous

    #458322
    Maz
    Keymaster

    Hi Linda,

    Unfortunately, iron-deficiency anemia and hypothyroidism can both lead to the symptoms you’re describing and, although anemia can be the result of some types of infection, hypothyroidism also predisposes a person to being more prone to picking up new or reactivating latent infections (vicious cycle stuff). Have you had any labs run lately? If not, it might help to have some things checked, including a full iron and metabolic panel. Also, see if the doc will check TSH, along with Free T3 and Free T4. Inflammatory and disease markers are important, because with a lot of inflammation, it can prevent proper thyroid conversion (from the storage thyroid hormone, T4, to the active thyroid hormone, T3) that is needed for normal cellular metabolism. Although you are taking Oroxine (a T4 med), your body still needs to convert it to T3). A person can be sub-clinically hypothyroid, even if TSH looks normal, because they aren’t converting properly. In your shoes, and this might be pushing it, this is what I’d ask the doc for:

    CBC (complete blood count – elevated WBCs might indicate infection)
    CMP (comprehensive metabolic panel)

    Thyroid Labs

    TSH (ideally between .5 and 1.5)
    Free T3 (most people feel well if the number is in the upper quartile of the range)
    Free T4 (ideally mid-range)
    Reverse T3 (ideally bottom of range – reverse T3 is like a brake…this lab, when elevated, can help determine if something is blocking proper conversion, like inflammation, anemia, low Vit D or low B12, because what T4 isn’t being converted gets put into this inactive form of T3)
    Thyroid autoantibodies (TPO and TG, which may be important as dietary measures can help autoimmune thyroid diseases)

    Iron Panel

    Ferritin (ideally 70-90 for women)
    Serum Iron (ideally 110 for women)
    % Saturation (ideally 35% for women)
    TIBC (1/4 above bottom number in range for men or women)

    Nutrient Deficiencies

    Vitamin D3, called 25-OH (ideally 50-80 ng/ml)
    B12 (ideally upper part of range)
    Folate/folic acid (ideally >13.5 ng/mL…because you are MTHFR-positive)

    Rheumatoid Arthritis Labs

    ANA (titer with pattern)
    CRP
    SED rate
    RF
    anti-CCP

    You mention being MTHFR positive and that you are taking vitamins and minerals, but what type of folate are you taking for this?

    Hope this helps, Linda…just seems sensible to rule out the more obvious things first. Re: your concern about malaria, have you ever been put on Plaquenil (hydroxychlorquinine)? Also, please remind me…did you ever try minocycline or doxycycline? If so, for how long and what was your reaction?

    #458326
    Linda L
    Participant

    Maz, Thank you very much for your reply. I will have all my results including NIIM clinic very soon. I will reply next week.

    RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
    AP from April 2014 till August 2015. No luck.
    Current medications: Natural thyroid, Mobic, supplements,
    vitamins and minerals.
    MTHFR heterozygous

    #458327
    lynnie_sydney
    Participant

    Hi Linda
    So sorry to hear that. Sounds very similar to something I experienced in 2009. I had a night like that, shaking so badly that my teeth were knocking together violently, I couldn’t sit down in the bathroom because my body was shaking so much and I felt terribly cold, achey and flu-ey. Acute symptoms lasted about 36 hours but I had much longer term less obvious effects which came on late in the afternoon,early evening. Anyway, to cut a long story short, it turned out to be my liver. Please include all your liver enzymes in your tests. All of them are necessary to measure but some affect other organs too. The primary ones for liver are ALT and AST, ALT is ONLY the liver.

    Hope this is something transient and you find answers. Keep us posted!

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
    rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

    #458331
    Maz
    Keymaster

    Yes, Lyn is right about liver function tests. Here in the US, the comprehensive metabolic panel (CMP) includes testing liver function, but not sure about Australia.

    #458340
    Linda L
    Participant

    Lynnie, Maz, thank you. I will make sure to do all these tests.

    RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
    AP from April 2014 till August 2015. No luck.
    Current medications: Natural thyroid, Mobic, supplements,
    vitamins and minerals.
    MTHFR heterozygous

    #458398
    Linda L
    Participant

    So I went to the clinic for my results. They have discovered and they are sure about it that I have fungus malassezia. Mlassezia infection has been indicated in Still’s disease, manifesting with joint pain/arthritis and small round red rash. The doctor said that itraconazole would be too much for my liver. I was sent to a homeopathic doctor. She tested my left hand’s muscles briefly /kinesiology/ and I was given a mixture to be taken over the next two months. Now I must be on a very strict diet for three months: no dairy, gluten, sugar, eggs and meat. It doesn’t sound good, because I will lose weight again /I am 8kg less now and I’ve been always slim/
    Blood test: HB is better 109, ESR 68, CRP 80, RF high 181, iron 3, transferrin 1.8, transferrin saturation 7,ferritin 478,
    ALT 14, AST 23, CREATININE 40, ALP 120, T-protein 89, albumin 31, globulin 58.
    Thyroid TSH 3.46 and FT4 18.0
    Not so good. Still I will be doing more tests next week.

    RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
    AP from April 2014 till August 2015. No luck.
    Current medications: Natural thyroid, Mobic, supplements,
    vitamins and minerals.
    MTHFR heterozygous

    #458410
    Maz
    Keymaster

    So I went to the clinic for my results. They have discovered and they are sure about it that I have fungus malassezia. Mlassezia infection has been indicated in Still’s disease, manifesting with joint pain/arthritis and small round red rash. The doctor said that itraconazole would be too much for my liver. I was sent to a homeopathic doctor. She tested my left hand’s muscles briefly /kinesiology/ and I was given a mixture to be taken over the next two months. Now I must be on a very strict diet for three months: no dairy, gluten, sugar, eggs and meat. It doesn’t sound good, because I will lose weight again /I am 8kg less now and I’ve been always slim/
    Blood test: HB is better 109, ESR 68, CRP 80, RF high 181, iron 3, transferrin 1.8, transferrin saturation 7,ferritin 478,
    ALT 14, AST 23, CREATININE 40, ALP 120, T-protein 89, albumin 31, globulin 58.
    Thyroid TSH 3.46 and FT4 18.0
    Not so good. Still I will be doing more tests next week.

    Linda, thanks for your update. Sorry to hear you have Malassezia fungus, but it’s good to hear you’re being treated for it. Do you know what specific strain?

    Wonder if, after it’s treated, if you’ll be able to tolerate mino better? It will be good to be on your special diet, but perhaps the doc can provide you with advice on how to bulk up? You’re off dairy, so this isn’t any help, but patients with severe weight loss find that a combination of cottage cheese and flax seed oil can help with weight gain. However, there might be something else they can advise?

    Hopefully, if you can get the inflammation down a bit, this will help to improve your iron and anemia issues. Would need to know lab reference ranges for the other labs, Linda, as labs vary in what is considered “normal” range. TSH is pretty universal, however, and looks like it’s “in range,” but not ideal. The sweet spot varies for everyone, but my understanding is that an optimal TSH runs between .5 and 1.5. If you have ranges for your free T4 that would be good…did they not check free T3 or Reverse T3? These are pretty important when there is lots of inflammation, because inflammation and whacky iron, low Vit D3 and B12 will prevent optimal conversion of T4 (storage hormone) to the active form (T3). If Free T3 is lower in the range, some docs will add liothyronine, which is a synthetic T3. It made all the difference for me. If your naturopath uses natural dessicated thyroid hormone (porcine or bovine), then that contains both T3 and T4 in bioidentical levels.

    Hope your other tests go okay, Linda. At least you’re making some headway with answers, if only some pieces of your puzzle at this point, and hope you’ll begin to turn a corner very soon.

    #458418
    Spiffy1
    Moderator

    Avocados and coconut oil are good fats that can help you with weight if you tolerate them.

    Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
    RA Factor 71 in Jan 2015 down to 25 as of September 2017
    DR4/DQ8 HLA...biotoxin illness
    IGG food allergy to wheat, egg, and dairy...probably all grains
    Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
    MTHFR compound heterozygous
    Igenex IGM positive Lyme, minoMWF

    #458473
    Linda L
    Participant

    Maz, I don’t know what strain it is. Interesting. I will ask. My naturopath hasn’t changed my thyroid medication for a natural one. I will ask next time. So far my results look like that:
    TSH T-4

    taking Oroxine 100mg for 5 months 0.65 19.9
    75mg for 3 months 4.64 15.9
    75/100 for 3 months 1.29 17.3
    75mg for 2.5 months 7.1 16.6
    75/100 for 4 months 3.46 18.0 this is my dose now
    T-3 was not tested. It is confusing.
    You’ve asked which folic acid I take.Megafol 0.5mg not regularly. In fact I don’t know how much to take. My last test for serum folate a year ago showed 22.9. I’ve just purchased new folic acid Methyl Folate L-5_MTHF by ProHealth. It looks that this one should be better for me?
    Thank you very much Maz. I value your opinion.
    Spiffy, thank you. I will remember it.
    Linda L

    RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
    AP from April 2014 till August 2015. No luck.
    Current medications: Natural thyroid, Mobic, supplements,
    vitamins and minerals.
    MTHFR heterozygous

    #458476
    Linda L
    Participant

    A reply from NIIM clinic:
    Please note that our fungal genetic DNA test is not designed to distinguish between strains of a specific fungal species.

    All Malassezia strains will be similar in the stretch of 250 bp conserved DNA sequence which we analysed.

    Currently there are 14 recognised species:
    So they don’t know.

    RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
    AP from April 2014 till August 2015. No luck.
    Current medications: Natural thyroid, Mobic, supplements,
    vitamins and minerals.
    MTHFR heterozygous

    #458480
    Maz
    Keymaster

    Hi Linda,

    Maz, I don’t know what strain it is. Interesting. I will ask. My naturopath hasn’t changed my thyroid medication for a natural one. I will ask next time

    See you got the answer from your doc in the negative. No matter, it was just a general question as I wondered if treatment might vary based on the strain of the fungus or if strain variation might be known to produce different symptoms….sort of like mycoplasma strains, some of which are more virulent to humans than others and some that aren’t known to have any effect at all.

    So far my results look like that:
    TSH T-4

    taking Oroxine 100mg for 5 months 0.65 19.9
    75mg for 3 months 4.64 15.9
    75/100 for 3 months 1.29 17.3
    75mg for 2.5 months 7.1 16.6
    75/100 for 4 months 3.46 18.0 this is my dose now
    T-3 was not tested. It is confusing.

    Just going by your TSH results, because you didn’t include the reference ranges your lab uses for T4 (was this “Free” or “Total” T4?), it looks to my lay mind that when you were on the combo of 75mcg and 100mcg (TSH = 1.29), during your switch to the higher dose (due to prior hypothyroid result) that you had the best outcome. Swinging back and forth between these doses doesn’t appear to be really helping you, however, as 100mcg alone seems to suppress your thyroid (not badly and actually the .65 result is within ideal range) and the 75mcg is making you too hypo! I’m not sure why your doc would switch you to 75mg, because the .65 TSH reading is pretty good, unless you were experiencing hyper symptoms (jittery, sweating, weight loss, etc). If so, then the drop to .75mcg makes no sense, because the next step down is actually 88mcg! That might actually be your ideal replacement dose, because it’s right in the middle. Either 88mcg or just not taking one dose in a week of the 100mcg would have raised the TSH a little. Some docs will also do a combo approach if a person is in-between doses. For e.g. 2 days a week of 88mcg and 5 days a week of 100mcg. Levothyroxine is very slow acting, so dropping one day isn’t life-threatening or anything, even for me, without a thyroid.

    Thyroid meds are made in weird doses, because the tablets are in such micro doses of micrograms (mcgs, not mgs). So, the doses will go like this: 150mcg, 137mcg, 125mcg, 112mcg, 100mcg, 88mcg, 75mcg, etc. To drop the dose so suddenly from 100mcg to 75mcg when the TSH is in the ideal range (.5 to 1.5mg) is a bit odd and I’d question this, because big swings like this in dosing can produce horrible side-effects. E.g. each time my endo lowered my levothyroxine (I take brand Tirosint, a gelcap, which is free of additives) by just one step, within a week or so, I was feeling it, in both RA pains levels and systemically, with symptoms like diffuse headaches.

    Secondly, it can be very hard for rheumatics to find a good stable dose, because inflammation levels will go up and down with flaring and inflammation blocks thyroid conversion (storage T4 hormone, which is the levothyroxine tablet you take, to the active hormone that controls the body’s metabolism, which is T3). This is why getting the Free T3 measured is so important to rheumatics. You want to know how well your body is using the medication. If it isn’t using it well due to things like anemia and inflammation, it will put the T4 into what is called Reverse T3, which is like a braking system. It basically means that the T4 that is converting will go into an inactive form of T3 that just pools and is doing nothing. People with high Reverse T3 will often find weight loss is impossible, even if their TSH is normal.

    So, if you can, see if your doc will also test Free T4 and Free T3. These are the available forms of the hormone within your body and the Free T3 is showing you what your body is able to use. Reverse T3 is also a valuable test, because if it is high, it will make a case for combining liothyronine with levothyroxine. As mentioned before, when I added liothyronine (5mcg is equivalent to about 25mcg levothyroxine), it made a huge difference to my RA pain levels…and the added bonus was that my rheumatoid factor and anti-CCP BOTH came down rapidly after my post-surgical flare. If you look at my signature line, this is why I take both Tirosint (88mcg) and Cytomel (5mcg twice daily at 8am and 2pm due to its very short half life).

    I totally understand how difficult it is to understand thyroid function in rheumatic disease, because I’m living it, too. Since having had my thyroidectomy, finding the right dose has been incredibly challenging and I will likely need to stay on top of this for life as I have no option but to take replacement hormones now. Most recently, in fact, I became a little hyperthyroid, so my endo suggested dropping one day of my Tirosint (levothyroxine) per week, but leaving the Cytomel (T3 med) the same and it’s normalized my labs again.

    You’ve asked which folic acid I take.Megafol 0.5mg not regularly. In fact I don’t know how much to take. My last test for serum folate a year ago showed 22.9. I’ve just purchased new folic acid Methyl Folate L-5_MTHF by ProHealth. It looks that this one should be better for me?

    The ProHealth one seems okay and specially formulated for MTHFR, so would think it was fine. I have one MTHFR genetic mutation, as well, and my LLMD prescribes liquid methylfolate (with methylcobalamin B12) drops to take under the tongue to ensure adequate absorption. It is available online and I’m happy to share this brand with you in a PM, if you are interested to research it for yourself and ask your doc?

    Linda, just going by your TSH labs (and you know I’m just a fellow patient), my immediate impression is that your wavering thyroid function is probably significantly affected by the large increases/decreases in your medication and this is affecting your rheumatic pain levels. Getting this right should help a lot with this. It takes a good 6 weeks for a new dose to provide an accurate measurement in lab results, but perhaps your could ask if he/she will let your trial 88mcg to see how you go for a couple months? If you’re still in pain and your levels aren’t in ideal range, perhaps he would consider lowering you to 75mcg and adding in one 5mcg tablet of liothyronine (T3) to see how you go? There is some fine tuning that needs to go on with finding a good dose of thyroid meds and the tweaks should be made in very small steps.

    Hope this helps a bit?

    #458485
    Linda L
    Participant

    Maz, it helps a lot. Here we have tablets 25, 50, 75,100 and 200 only. Does it make a difference if I take 75 one day and 100 a day after or taking 88 every day? If it does I will need to take half of 100 and half of 75.
    I’ve sent you a PM regarding folic acid.
    Thank you so much!

    RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
    AP from April 2014 till August 2015. No luck.
    Current medications: Natural thyroid, Mobic, supplements,
    vitamins and minerals.
    MTHFR heterozygous

    #458486
    Maz
    Keymaster

    Linda, I wasn’t aware of the difference in Levothyroxine doses in Auz, but one solution to get a steady dose close to 88mcg would be to ask the doc for two scripts….one for 75 mcg and one for 25mcg. Then, to cut the 25mcg tab in half and take that half daily along with the 75mcg tab. Hopefully your doc also mentioned not eating for an hour after the morning dose to ensure adequate absorption, especially dairy or anything with calcium? I usually set my alarm for 6am and then roll over and go back to sleep till breakfast time.

    #458487
    Linda L
    Participant

    Thank you Maz. A good idea. I will ask for the new prescriptions. Same here. I take it at 6 am and still sleep a little bit.

    RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
    AP from April 2014 till August 2015. No luck.
    Current medications: Natural thyroid, Mobic, supplements,
    vitamins and minerals.
    MTHFR heterozygous

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