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Tuesday, March 9, 2021

A Medical Update

Me cuddling with newly 7 year old Rose in the place I seem to be
spending most of my time these days, my bed.

It's been some time since I shared what is going on with me and my health situation and I wanted to update you.

Unfortunately, there hasn't been too much of a change. But I guess that means at least things aren't getting much worse. 

The biggest change really is that getting progressive glasses really helped and completely fixed my dizziness. That was a big thing because the dizziness was quite debilitating. Unfortunately, none of the rest of my symptoms resolved.

In December, after months of waiting, I finally started taking synthetic thyroid hormones, at a low dose, to hopefully help with my medical issues, including extreme fatigue. The endocrinologists through my HMO refused to prescribe me this medication, and my GP also refused, so I was pretty much stuck. Then I spoke to my dad, who also works for my old HMO, as a metabolic specialist (in addition to working as a cardiologist), and he agreed to prescribe me synthetic thyroid hormone, because my numbers and my symptoms showed that these meds should help me, even if they weren't extreme.

Two weeks after I started these pills I saw an endocrinologist through my new HMO, who came highly recommended. He listened to my long list of symptoms, said some of them might be thyroid related, but other ones weren't thyroid related, but he was willing to test me for pheochromocytoma, a rare adrenal related thing that could be causing those issues. And he also told me to come back 3 months later to see how the synthetic thyroid is helping me. 

The pheochromocytoma test was a test that was a real pain to take, and involved a really strict diet for 4 days straight, but I did it. And it came back negative for that.

The thyroid meds helped but only slightly. If before I was 100 on a scale of exhaustion, now I'm maybe a 95. A difference, but not enough to actually help.

I went to a neurologist that came highly recommended about nerve issues and pain I was having and wanted him to test for certain things, but he was dismissive and said that it sounds like all my health issues are psychosomatic, and I should see my psychiatrist about that. This was extremely offensive and upsetting to me, because if its all psychosomatic it makes me feel very dismissed, and also hopeless, because if its something psychological then I'm basically screwed because I've been in therapy for 4 years and still in pain and I'm not sure how more therapy is going to help. At least he was willing to prescribe two tests- a CT of my head and an EEG. The CT came back normal and I didn't do the EEG yet.

But because he said it was psychosomatic in his opinion, I decided to reach out to my psychiatrist with my long list of symptoms and I asked him which of them were likely psychosomatic and which likely not, and which likely caused by my meds, and he said not caused by my meds and some might be psychosomatic and recommended again that I do somatic therapy which is supposed to help with that type of pain. He said, though, that my exhaustion doesn't seem to be psychosomatic and I should ask my endocrinologist to raise my thyroid meds.

I did start somatic therapy in addition to my regular therapy and its very, very slow going, and honestly at this point it's hard to feel like it'll work, but I'm spending the time and energy and money on it now, because I'm trying to get better.

Today I went to the endocrinologist again with my latest blood test results, and the doctor looked at them and said that my meds are working fine, my thyroid is acting fine, and no need to change my meds. I told him that I was still suffering, that my body temperature was messed up, I'm always hot and sweating even in cold temperatures, and my thyroid antibodies were high, my body shows levels of inflammation, and my exhaustion is so extreme that I have such a hard time getting up to get the kids to school in the morning and am getting in trouble from the schools, and I need help. I was begging him to please help me and he's like talk to your psychiatrist. I said my psychiatrist said my meds are fine and I should try a higher dose of thyroid meds and he said fine, try taking a higher dose. But beyond that he said he wasn't able to help me.

And I just left the doctor's appointment near tears. I was hoping that maybe we'd finally find a solution, find something to help me, but was left with pretty much nothing.

A local GP has been at least slightly more helpful. He sat down with me and a list of symptoms and gave me a diagnosis which I'll be sharing more about in another post, but he referred me for a few different tests, including an EMG of my arms and spine, and an echo for my heart, plus a few other things.

I have an MRI of my pelvis next week (I wrote next month but then looked at the calendar- it's next week!) and then another appointment with the rheumatologist. And tomorrow I have an appointment with my doctor through the HMO so he can write my referrals for the EMGs and echos etc...

And now I also really need to schedule a sleep study.

Even with all the stuff we're testing, there's so many questions. Not a single doctor has any idea why I am ridiculously hot all the time. Today was a cool day and literally sweat was dripping down my face when I was inside and my kids were cold. It's really frustrating. But at least we have leads about the nerve issues, some other issues, and my constant joint pain. And a sleep study may help to see if I have sleep apnea...

The only actual diagnoses I've gotten thus far have been hypothyroidism and one other thing for another post, but there are so many other issues that I still need to figure out...

I wish I actually had more concrete stuff to share, but oh well, medical mystery me.

10 comments:

  1. This is so hard, I'm sorry. And totally understand - for years I went careering from one theory to another ("wanting attention" was popular) until finally...finally enough symptoms and a near-death experience surfaced to warrant a diagnosis. And now there's no question about it.

    Part of the problem was not knowing how to describe what was happening, especially the neurological and visual stuff.

    Once the diagnosis was in place, and I could get the right medication, suddenly I'm moderately functional again. It changed everything. But time was needed, and the doctors, especially the neurologists, didn't know how to explain it to me. (And a better family history helped a lot too.)

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  2. This set of symptoms sounds very familiar to me. For one thing, it sounds like long covid. Is there any chance you could have had a mild case of covid, perhaps even asymptomatic? Long covid symptoms include debilitating chronic fatigue, joint pain and recurring fevers, among others. People are getting these symptoms without having severe covid in the first place.

    Other than that, they also sound an auto-immune symptom array. Could you get in to see a rheumatologist? They are the ones to consult about that.

    Good luck! I hope you find some answers soon - waiting is so difficult and frustrating.

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  3. Sorry you are dealing with difficult doctors. That has to be the worst pet of being I'll. Keep advocating for yourself and keep researching. Hormones such as thyroid and female hormones can be tricky for western medicine because they don't want to do blood work (in my experience), only look at outward symptoms. Keep pressing on and if it is ok I will pray you find the help you need. Parenting is hard and being sick on top of it is not easy for anyone.

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  4. Have any of the doctors checked your vitamin D and b12 levels and for histamine intolerance? (not quite sure what the name is in English...)
    I hope some answers will be found very quickly!

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  5. I have been reading things you have written here for years and in the last few days elsewhere. You are truly an inspirational person and amazing Mom. Stay strong and persevere. Everything I know about you tells me that you will come out of this and turn lemons into lemonade. I wish you every good wish on this journey towards better health. It may encourage you to know that I have been amazed by some of your wisdom, goodness and insights and you are helping others even if you may not realize it.

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  6. If your thyroid antibodies are high, then it's likely you have HASHIMOTO'S, just like me. Are you able to find a functional medicine doctor in your country?

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  7. Read the book The Healing Thyroid by Anthony William jes known as the Medical Medium and thoisands with chronic ollness are healing with his protocols.Drink 16 oumces of pure celery juice every morning the list of benefits are too numerous too memtion. Good luck

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  8. Anthony William! auto-immune! It sounds like a lot of diseases (which are all symptoms, not actual diseases- often the blood tests are not an indication because the problem can be heavy metals stored away in organ/tissues or old virus EBV/Lyme also hidden in organs etc which have a coating around them that a compromised immune system cant break down)
    Try BIOHAWKE australian product the pine crush and the ginger digestion relief. They sell it in Aus but maybe in USA too, just do a google. You can also ring Cliff, the scientist who produces it and talk to him.
    The medication industry has no idea how to heal chronic illness or these types of mysterious crazy symptoms.
    Have you ever had vaccines , been bitten by a tick? but also try the celery juice, 2 cups every morning-this is a very good thing to try. Fasting also helps re-set your body.
    Doctors will just give you a pill to band aid the message your body is giving you. I know it can be so frustrating , and its a big journey. Remember your body wants to heal. There are so many great health sites and practitioners in the USA!and practitioners Dr Klinghardt/Sophia Institute, just off the top of my head. Dan Pompa, and many more (cant think of them all right now)cheers!

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  9. Could you possibly be entering into early perimenopause? The hot flashes sound familiar...

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  10. If a diagnosis is tricky sometimes we have to diagnose our own ailment and then let the doctor think he or she has diagnosed it so that we can get appropriate medical help. Most doctors don't have time or won't take time to root out obscure problems. You are very good at investigating so I suggest you keep on searching for answers.

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