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Autoimmune Disease My Journey

Thyroid Autoimmune Symptoms and More

If you have thyroid symptoms whether hyper or hypo then you are very aware of how frustrating diagnosis can be. You have probably been in many doctors offices explaining your symptoms only to be told some excuse, while you continue to suffer needlessly.

You may have the actual diagnosis of hyperthyroid or hypothyroid but doctors do absolutely nothing to alleviate your symptoms as you become less of an active member of society, and opt for the sofa while contemplating the last two weeks of laundry to decide on a nap instead.

Or in my case be told you have Hashimoto’s when you in fact have Graves disease and dangerous symptoms are getting worse and find yourself  in a life or death situation and surgery relearning how to walk again.  

I had blood clots in my arteries caused by Graves’ disease and the A-fib it can cause, So the hypothesis goes of what caused them. 

 Unfortunately my symptoms were Graves’ disease.  Those symptoms were ignored for years. As I got sicker and sicker, weaker and weaker. Suffering immense swelling pain and inflammation throughout my body. Even my jawline was swollen and no longer defined.

That isn’t even covering my large lump in my throat that had a large goiter, and a nodule on each side of my thyroid. Including calcifications and a hypoechoic halo. One nodule growing at last check was 4.4 cm. Which I have shrunk with natural meds. 

So what are the symptoms of thyroid issues and how do you tell the difference between hyper hypo, Graves and Hashimoto’s? 

Symptoms hypothyroid or Hashimoto’s:

  • Exhaustion
  •  Dry brittle hair
  • Dry skin, extra callouses on feet and heels
  • Slow growing nails, flaking nails and breakage
  • Weight gain no apparent reason and weight loss difficulty
  • Hives (not always but can appear in flares)
  • Swelling in face, puffy eye area
  • Cold intolerance
  • Hoarse voice 
  • Heavier than normal period
  • Memory problems

Symptoms hyperthyroid or Graves disease: 

  • Exhaustion 
  • Weight loss for no apparent reason 
  • Difficulty sleeping
  • Shaky hands and fingers
  • Aches in muscles and joints
  • Muscle weakness (usually in front thigh muscles)
  • Lessening of physical endurance 
  • Goiter – lump growing around mid throat area(between collarbone and jawline)
  • Agitation, irritability, mood changes (sadness or feeling blue for no apparent reason or feelings of doom for no apparent reason-sadness can also come with Hashimoto’s )
  • Heart palpitations 
  •  Difficulty breathing (not often mentioned in the literature)
  • Bulging eyes, eye discomfort (feeling like sand or dust in eyes continually)
  •  Fine thinning hair, hair loss, lack of hair growth on legs and body. 
  • Heat intolerance
  • Confusion
  • Lighter period or missing completely
  • diarrhea or frequent bowel movements

  With hypothyroid and Hashimoto’s you will have a higher TSH and lower FT4 and FT3. With Hyperthyroid  and Graves disease you will have a lower TSH and higher FT4 and FT3, and a high TPO (Thyroid peroxidase). You can have TPO with hashimotos as well. TPO signifies autoimmune thyroid. It doesn’t differentiate which one. 

There are more specific antibody tests that can be done. The numbers aren’t always the same and you will have to test often depending on the severity of your illness, meds taken and other factors. 

Thyroid peroxidase if you are wondering helps doctors decide whether your thyroid issues are actually caused by autoimmune thyroid disease. It does not differentiate between Graves or Hashimoto’s.  The TSH and FT4 and FT3 “suggest” to a physician which way you are leaning unless like many they are so far one way it is quite obvious. I kind of say that with tongue in cheek.

It isn’t rocket science for most professional endocrinologists. Which I am glad it isn’t because I suspect with the status quo on treatment from my former endo, we’d have rockets crashing into our homes on a regular basis if it was. 

They generally want to do other antibody tests to verify. Or you can have both which is rare, but it does happen. I TSH ft4 and ft3 are and always have been of Graves while stranded here. 

I myself had a low TSH and high scraping the top levels of FT4 and FT3 at first testing when they told me I had Hashimoto’s. I had higher levels of TPO. It continued to get worse. 

Doctors generally ask patients their health history and what their symptoms are. Mine refused my health history, and symptoms. Yours may have and probably has asked though. Whether they take you seriously, or prefer you to jump through hoops and flames to begin healing, is an entirely different scenario. 

I’ll leave my experiences of my endo for a future post.

If you have any of the above symptoms get a physical and ask to check your thyroid. Look at the results yourself and learn what they mean. Also ask for the TPO. If it comes back positive they can do more. 

I don’t know why but many doctors never check antibodies while testing thyroid. And after “normal” reference range received will more than likely continue to deny those thyroid antibody tests. 

The problem with the not necessary if thyroid levels in normal reference range is this…

You can have thyroid autoimmune and your levels are in “normal” range but what is “normal” for you? I’m doing another post on this in the future.  But the antibodies if you have them normal levels of everything else or not, are attacking you in the background.

And by doing so doing much damage to your thyroid and entire body. Even your vision, heart and even vascular system in a worse case scenario. Some damage is irreversible. 

No to mention costing you financially as you become less and less productive and struggle to take care of bills and life. And Socially because you have no energy to do the things you once loved. 

Your thyroid maintains your entire body system. If your thyroid isn’t running correctly every part of your body will falter. Like a car that has fuel mixture problem not addressed. 

If you don’t take care of it you can mess with your entire engine bit by bit part by part will start to fall apart and have problems.  It may take a while, but in the end you will have a huge mechanic bill or may even need a new car. There is a good chance if you didn’t fix the first problem you wont get far in future problems.

Just like our bodies because of thyroid disease. 

The only problem is we can’t just get a new body when we don’t maintain our thyroids as medically needed to proceed with our lives and responsibilities. 

After the damage is done if severe enough, can be extremely hard to gain back and restore fully, if at all. 

Myself during this lack of proper diagnosis I had heart problems. I did mention many many times to many different specialists and doctors and I eventually gave up. I did not know they were thyroid problems but they were. 

My symptoms were stacking up and no one would listen and my endo was absolutely not interested as I mentioned they didn’t even ask me health history and wanted nothing to do with it. I was told it’s Hashimoto’s goodbye I’ll call you back in six months basically. 

I was in incredible pain for years. I had difficulty breathing here and there intermittently  for a very long time in many separate flares. And many symptoms of overlapping autoimmune illness. Serious I might add.

I could hardly walk I was so weak in my front thighs. Swollen and retaining water. Sore joints, muscles and I was getting uglier by the day and uglier yet by the year.

My face was changing as well. My once beautiful thick hair looked like a sparse rats nest.  The texture also changed dramatically.

I ended up getting the correct diagnosis of Graves disease when I was in the recovery wing after a massive embolectomy. I had many arterial blood clots throughout by body. Which are extremely rare. I’ll share the written report of my CT scan in my embolectomy post for the medical community who reads this. Or patients that are curious. More uncommon knowledge not shared often because of the rarity. 

Mine was precovid and pre vaccine. This happened in spring of 2019. I feel the need to clarify that fact! As it contributes to the damage and the rarity of my situation and danger I was placed in. And I have not and will not be a part of that mess going on. 

One of my surgeons told me they couldn’t figure out my severe tachycardia and they were extremely worried during my surgery. I then told them I was diagnosed with Hashimoto’s and of course It was graves disease. They did a full panel. My tsh by that point was .18  and I still waited another six month to be bestowed the “privilege” of treatment. 

I compared notes to the “Hashimoto’s” levels in previous paperwork I finally received after being denied those as well until a bout with a board.  I was never Hashimoto’s levels ever.

I had continued to drop the TSH and increase the FT4 and FT3 to dangerously high levels. At surgery I was TSH  .18 the highest being .69 and extremely high Graves autoimmune antibodies levels along with a higher TPO than in beginning. 

The other clinicians and endo’s who came in to see me all rolled their eyes when they heard who my endo was when asking. A normal occurrence after when in hospital for future thyrotoxicosis. They all seemed to have contempt as I did but as “colleagues” who heard it before. It seemed a regular occurrence and nothing new to them. 

That’s not the end of my thyroid journey of course nor my embolectomy, but for this post it is. 

I will touch more on thyroid in future. But I thought I’d write a different perspective that not many hear about.

People including doctors need to be aware of the damage that can happen. Also physicians  need to be aware of the danger they can be placing patients in. 

Then again that might be pointless because good doctors already know this and don’t do what was done to me. 

Anyways,  it is extremely important you take care of your thyroid. 

If you must and you strongly feel it is your thyroid, and you are suffering but your doctor will not check for full panel including at least TPO, whether insurance or their stubbornness. Tell them you will pay out of pocket (if you can) for the autoantibodies if they are so hell bent on saving your insurance. You yourself are interested in saving your quality of life and health.

If they still refuse I would suggest going to a licensed naturopath and paying them if you can afford it. They can give you the same requisitions for blood work that any MD can. They generally like to get you the answers you need. 

 

 

Kiki
Author: Kiki

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