Trying to find a pattern or reason for symptoms need them under control

Diagnosed with hoshimotos two years ago when had episode that came out of nowhere while driving of severe numbness and palpitations and increased heart rate with sweating and hallucinations at one point. TSH that day was 4.9. No t3 or t4 was done nor did the hospital tell me that day anything about the elevated TSH. Went on wild goose hunt for what was wrong with me for almost a year with symptoms of fatigue I was in bed for 2 weeks straight thinking I just needed rest. Episodes of symptoms very similar to hypoglycemia, stroke and something neurological all together. My main concern for the past two years has been the constant dizziness and feeling of detachment from my surroundings and body. ENT noted irregularities with whatever my eyes do in the dark but couldn't place the symptoms with anything and said if she didn't know any better she would think I had a tumor. 2 MRIs of brain and an MRA were done nothing found. MRI of entire spine done to rule out MS as I would drop things and was stuttering and slurring for two weeks. Cardiac tests from EKGs, 24 hour holter done,echo stress test straight through to a cardiac catheterization as per my own request. Nothing found cardiac, nothing from neuro found. Rheumatologists found TPOs over 600 and the other one to diagnose hoshimotos was high. Since then. .. Symptoms got so bad I had to leave work for a week here for doctors and another week there. Fast forward to maybe 8 months ago. After reading and learning and talking to others convinced my doctor to give me synthroid. Started on 25mg daily. Within 2 weeks was extremely worse. Switched to armour thyroid 15mcg. Was still bad. Told here to increase every 2 weeks until at 90mcg or until feel better. Still trying to stay awake throughout the day still dizzy and really never having a day where I feel here. After 2 months on armour my labs were as follows.

TSH. 2.86 range. 0.358-3.740

Free T4. 0.77 range. 0.76-1.46

T3 total 125 range. 71-180

Sed rate. 24 range. 0-20

Cortisol 11.8 range am 6.2-19.4

Range pm. 2.3-11.9

ACTH 9.0 range. 7.2-63.3

A1C. 5.3 range 4.2-6.3

Cpeptide 4.9 range 1.1-4.4

Insulin 18.5 range 2.6-24.9

24 hour urine results normal checked for adrenal tumor because low blood pressures huge issue now.

Last vit D was low so been supplementing for months.

Last B12 540 lower bracket of normal range. Take that supplement as well.

Had 3 nodules growing a year ago take selenium daily last thyroid ultrasound last week showed one tiny nodule so that test now normal.

Increased my thyroid med to 60mcg. Actually for once felt okay not fearful to walk far or scared of waves of numbness or fear of dozing off while driving for almost 2 weeks. Went to increase by half before work on July 20th. Took extra half that morning. Felt way off that day and knew it. Ended up having severe blood pressure fluxes that got me picked up by ambulance.

TSH after slowly increasing thyroid med and being on armour about 3 months was 1.360. No normal range given on lab

Blood pressure stabilized at 80/50. Since then haven't been at work or able to have normal functioning for more than half a day.

Labs after 1 month off all thyroid med as they had me stop on July 20th

TSH 2.920 range 0.358-3.740

Free T4 0.97 range 0.76-1.46

Free T3 2.9 range 2.0-4.4

Cpeptide 3.0 range 1.1-4.4

Normal from last c Cpeptide which first time was not fasting had to explain before this once again was all blamed on pre diabetes by the doc.

Ferritin I don't think I've ever gotten results from the 5 times I've been to ERs. But always told Im not anemic.

Should I start my medication again? ??..

Can high TPOs but normal labs be the reason behind life altering debilitating scary anxiety ridden symptoms.????????

9 Replies

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  • Do you take vitamin B complex as well as B12?

    Apparently ....All the B's need taking together

    Should be a good quality one with folate in, not folic acid ( eg Thorne or Jarrow)

    Your B12 looks quite low - how much are you taking?

    drgominak.com/vitamin-d-hor...

    Also according to this link can get low in B5 / B6 when supplementing vitamin D. (So recommends B complex anyway to improve this)

    How much Vit D are you taking and has level improved?

    vitamindcouncil.org/tag/aut...

  • Hello there I do take a b complex supplement I take 4 a day cannot recall the mg at the moment. But the vit D I take 3-4 1000 mg daily. And they never rechecked the levels of either

  • Suggest you get Vit D checked then

  • "TSH 2.920 range 0.358-3.740 -- Free T4 0.97 range 0.76-1.46 -- Free T3 2.9 range 2.0-4.4"

    You could feel better with TSH below 1, FT's higher say 70% in range

    Read chapter 'Treatment options':

    thyroiduk.org.uk/tuk/about_...

  • Sorry to hear you have been having such a terrible time. The problem with Hashimotos is that your body is producing antibodies against your own thyroid gland, but not in a steady way. One day your thyroid might be left in peace to get on with its job happily, and the next it might be under severe attack, which could cause it to release lots of hormone as the cells are destroyed. This can mean that your thyroid hormones are up and down like a yoyo and you struggle to ever find a level of thyroid hormone supplementation that suits you. One day you are hyper and the next hypo. High blood pressure and fast pulse are hyper symptoms, and light headedness, poor balance and tiredness are hypo symptoms.

    The one thing you could try, which helps many people with high levels of thyroid antibodies, is to go completely gluten free. Some people (not all) find that this gets their thyroid antibody levels down to a level where they no longer get the flare-ups of immune activity. In your situation it is definitely worth a try. One theory about why this works is that gluten mimicks thyroid cells in a way that prompts an immune attack.

    Bets of luck.

  • Also I think it would be worth getting your ferritin checked. You're not anaemic, but you may still have ferritin at the bottom of the range, and that will contribute to you being exhausted and to your thyroid limping along.

    It sounds to me as though you'd hit a good place and then you increased too far. It takes forever to get better and we have to be patient. V sorry you are having such a bad time.

  • I had the exact same symptoms with Hashimotos. I have dealt with similar although milder symptoms for over 30 years. Most doctors do not know what is wrong, because it is the nature of the disease - Hashimotos. One doctor that I found helped - told me that what was happening was called Thyroid Storms. Mind were fleeting and therefore, not seen with blood tests / lab tests of any sort.

    Thyroid Storms are surges / overdoses of thyroid hormone, whether it is from within (your own hormone) or without (like with medication). So, it is understood that with Hashimotos the thyroid makes the hormone, but the immune system kills it - at varying degrees of effectiveness. (So, Hashimotos is first and foremost and auto-immune disease rather than a thyroid disease) If the immune system is overtaxed - more thyroid hormone will get through. If we are taking medication, then we are slammed with a "Storm" of hormone flooding in all at once. (I used to describe the episodes like you had, as an "internal earthquake" - they DO come out of nowhere, causing instant and colossal thirst, rapid heart beat, dizziness, sweating, etc.) After the storm, energy is gone, and sleep seems to help one recover.

    So, what can one do to deal with the nature of an auto-immune disorder? Many things! My own experience was better with Armour Thyroid - Snythroid and other-like replacements were horrible. Too much salt seemed to bring on a Thyroid Storm. Taking Calcium supplements with thryoid medication (especially Synthroid) seemed to bring on the storms. Drinking coffee with any of the medications seemed to cause problems too. Dr. Bergman of California says that Hashimotos can cause both Hyper and Hypo thyroid symptoms, and again the source of that problem is the nature of an auto-immune disorder. The real question is: "What caused my own immune system to turn against my otherwise normal functioning thyroid?!" (And why don't DOCTORS ask this question as well?!!)

    After 30 years, the answer has come to me, after a long and exhaustive search. The auto-immune disorder "Hashimotos" is caused by "Leaky Gut Syndrome" / and overgrowth of candida caused by anti-biotic use in humans and agriculture. What caused our gut to leak? Pesticides in our food. Chemicals in our water. Hormones and GMO residue in our meat. Medicine - even the good stuff, like Armour and NatureThryoid won't cure Hashimotos. Healing the gut is the cure for Hashimotos. How does one heal the gut? Medical Science / Doctors are just becoming aware, but most of them are not willing to walk out on that limb of true cure for Hashimoto's because the science is so new, in my opinion. And the cure is not in a bottle, nor from a pharmacy.

    Dr. Bergman of California recommends 6 weeks of organic vegetables, (no dairy, no meat, no alcohol, no sugar), clean "healthy" water, and the gut will heal. Some folks will heal sooner, some it will take longer. I'm on my first week - the already feeling the benefits. I will continue taking the medicine (60 mg of NatureThryoid) I may stay on this diet forever, just because I feel so good! (losing weight, mind clearing, energy re-doubling daily, bloat dissipating). I will know when the time comes to cease the medicine, as I am well acquainted with the feeling of an over-dose of thyroid hormone. If and when the "Storm" returns - I will know the gut is healed, the candida over-growth (in the gut) is gone, and my journey with Hashimotos is over.

    There is a cure for Hashimotos and other auto-immune disorders. It is found with much personal research, or with a special kind of Dr. who practices "Functional Medicine". This site has been hugely helpful in my journey. Thanks to "Heloise" (highly recommend "following"!) and the many YouTube videos of Dr. Bergman.

  • I just started the paleo diet approach yesterday. I feel like I am out of options and this is my only chance. I have to be able to work to support my two children as we have nobody else to depend on if this disables me. I cannot have that happen. I am going to get acupuncture and have learned acupressure as well to help get this under control. I appreciate your response more than you know as today was horrible and I mentally lost it really worried its changing my brain and worried about the personality change that happens sometimes due to being so unwell all the time. Flushing and whole body feels hot today and dizzy bad. I am grateful for your response as I now know they aren't missing anything that is going to kill me and I am not losing my mind. There are no words to express the gratitude I have for that thank you so very much. If I may I would love to contact you via email or Facebook or anyway if you feel comfortable doing so. It would be a great thing having someone with the same experience and has lived the solution on my side.

  • We are all in this together - somebody helped me, and it is my way of saying thank you to help someone else. Why don't we continue to communicate here, to continue to share what we have learned with others? I do believe that there is a place for thyroid hormone replacement (Especially Armour and NatureThroid - in the UK, apparently there are other sources of T-3 and T-4, perhaps someone else would care to comment on that? Here in the US, we do not have access to natural, without a prescription, T-3 and T-4, anyway none that I have found) until diet heals the gut. You will be able to work and have energy and a clear mind if you body has access to some form of thyroid hormone until the gut heals.

    You too, when once you have found the healing way out, will no doubt shout it from the mountain tops, and share what you have learned. Someone here commented that Glueten seems to cause auto-immune flare-ups, and I do believe that is true. As you stick to the Paleo diet, eliminate the Glueten, try it for 6 weeks just has an experiment. When we have to heal ourselves, and when responsibilities such as yours (and mine!) weigh heavily, we must be very strict with ourselves. I can give up a little bread, crackers, and even beer (ha!) to feel better. Read everything you can get your hands on about Leaky Gut Syndrome, and Yeast / Candida over-growth in the gut. Di-flucan, an antifungal available here, helped tremendously - but I can't get the Dr.s to continue with the prescription. So, I look for the alternatives. Bragg's Organic Vinegar is an excellent anti-fungal remedy - and here it is around $5.00 for a quart. A quart lasts for almost 60 days!

    Pro-biotics help put the good back in that anti-biotics kill. I used to take them only after a round of antibiotics. Now? I take them every day. They too are fairly inexpensive and help to heal the gut.

    Do let me know of your progress. I will look for updates. In the meantime, do a little experiment in your social groups, work groups - any gathering. Ask how many have thyroid problems. I've done that. Invariably, across the nation it is 1 in 4, sometimes 1 in 3. The percentages are rising. Why isn't anybody in the medical science world noticing / finding out why? How long before the percentages change from 25% to 50%? to 100%? There will be more answers soon. Somebody important is going to be affected, and things will change.

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