Hypothyroidism courtesy of Lyme Disease. Anyone have natural solutions to the Hypo?

[Lymita]

Hi, I'm new in the neighborhood, or as we say in Mexico, la colonia!

This is a story of my 11 year old daughter. At the risk of giving too much information (or not enough), I've condensed her story into two versions, short story and novel. For those who would like the complete history please scroll down to the novel portion.

Here's the short story....

May 2012 - May 2017: Undiagnosed Cyclical Sickness

January 2017: Diagnosed with Hypothyroidism: Euthyrox 50mcg prescribed, labs still wonky

May 2017: Diagnosed with Lyme Disease: Cowden Protocol Treatment for Lyme disease, Cyclical symptoms improved!

September 2017: Switch to Armour, worried our "Holistic" Doctor has made an error in making the transition from Synthetic to Natural Thyroid as our daughter is now experiencing a rapid and pounding heart, and feeling winded after light physical activity.

Today: Please scroll down to my question at the bottom of the post.

Here's the novel version:

I have an 11 year old daughter who has suffered for 5 years with a strange cyclical sickness. Every 3-5 weeks she would start with an extremely sore throat, followed by nausea, vomiting and lethargia for 24 hours, followed by complete health in between. She was diagnosed with cyclical vomiting syndrome (CVS) but we continued the search for the real reason. After 15 specialists (and way too many lab tests) she was finally diagnosed with hypothyroidism in January due to an enlarged goiter. She started on 50mcg of Euthyrox (Levothyroxine) and has been continuing on this dose despite consistently slightly high Free T3 and slightly elevated TSH.

In my heart I knew the thyroid problem was an attack by some virus or bacteria on the gland because it just didn't make sense that such an otherwise healthy kid should be struck by CVS and Hypo at such an early age. So we continued the search for a diagnosis for the cyclical sickness. After seeing 7 more specialists (and way too many lab tests) she was finally diagnosed with Lyme Disease. Even with this diagnosis, only 1 of the 5 endocrinologists that we've seen admit that her thyroid problem could possibly be Acute Infectious Thyroiditis.

For the past 4 months her Lyme has been treated naturally using the Cowden Protocol accompanied by a completely healthy change in diet. Thankfully her Lyme symptoms have diminished and she is healing. I have been learning a lot about Lyme and I feel very comfortable with her treatment and progress. However I have not until today done a lot of research on hypothyroidism due to the fact that I have always believed that once the Lyme is dealt with, her thyroid will return to normal.

Unfortunately that's not the case. Her Free T3 has always been slightly high despite the medication. Her TSH has been up, normal, and up again. All other levels are in the normal range.

Free T3: 4.13 to 5.05pg/mL; (normal range is 1.5 - 4.1pg/mL)

TSH: Started at 37.8uUI/ml before meds, lowered to 0.68-1.69 during meds and now back up at 9.27 to 11.88 before Armour (normal range 0.4 - 5.5)

I was so happy to finally find a holistic endocinologist that prescribed Armour after her being on Euthyrox 50mcg for 9 months.

Here comes the problem... I completely trusted in this doctor and now we find ourselves in a distressing situation. Since starting Armour (plus full dose of previously prescribed Euthyrox) my daughter has been experiencing shortness of breath after climbing a flight of stairs, or running a little bit (same as when she first started on Euthyrox), and on top of that she has been having a very loud, rapid, thumping heartbeat, mostly when doing moderate exercise, but sometimes while sitting still.

The question:

What should we do? I've been in constant contact with our Endo, but she has been telling me to wait for things to normalize. Finally she said we can 1/2 the dose of Euthyrox. After doing some research today on my own I find that the dose my daughter was given was 4 times what she should have had. Here's the doses as per the Doc:

First 2 weeks: Stay on 50mcg Euthyrox + 1.5 grains Armour

3 days: Reduce to 25mcg Euthyrox + 1.5 grains Armour

Next week: 25mcg Euthyrox + 3 grains Armour

From what I've been reading, her normal dose of 50mcg Euthyrox is nearly equivalent to 1/2 grain of Armour. According to my calculations my daughter took quadruple the dose of meds! And the doctor has prescribed things completely backwards and unconservatively.

I plan to take her first thing in the morning to do complete thyroid blood tests to see what's really going on. I also plan to continue with 50mcg Euthyrox, and completely discontinue the Armour for the time being until we can get our hands on 1/2 grain and get some answers as to how to transition from Levothyroxine to Armour.

In the meantime, it would be so nice if one of you kind souls could chime in on what's the best course of action here. I really appreciate anyone who can offer some support or words of wisdom.

Thank you!

Roxanne

[Marz]

Hi and welcome ! Sorry to read of your struggles. Lots of people will be able to help with the transition from Levo to Armour - I think you are right - Armour dose sounds too high.

If you are going for more tests I just wanted to suggest testing for thyroid anti-bodies TPO & Tg to rule out Hashimotos. Also test for B12 - Folate -Ferritin - VitD - as they need to be optimal for thyroid hormones to work well.

You sound as if you have every thing under control - I really hope your daughter soon makes a full recovery. It must have been a very worrying time for you all ...

[Lymita in reply to Marz]

Marz, I can't thank you enough for your quick response!

The good thing about Mexico is that you can walk into the lab and order whatever test you want, so I will definitely add your recommendations to the list.

I have sent a long email to our Doctor, and while writing it I really became more clear that there must be some mistake.

I appreciate your reaching out. It was really needed tonight. Wishing you and your pupper a clear path to healing.

Un abrazo fuerte,

Roxanne

[Marz in reply to Lymita]

Glad Mexico provides ease of access to testing. I live in Crete and we have the same excellent facilities in the next village 😊

If you want to share the results of the tests I have suggested then start a new thread so more people see them ... happy to help.

Sorry - what is pupper ?

Hope all goes well ....

[Lymita in reply to Marz]

Hi Marz,

I will be sure to share the results, is there a particular place you suggest I start the thread?

Thanks again for your support. It means a lot.

Hugs!

P.S. Pupper=dog. I read on your profile page about your dog having thyroid problems. Give him a tummy tickle from my daughter & I both.

[Marz in reply to Lymita]

Sorry should have said create a new post with the results 😊

Will certainly give Demelza a tickle - more likely the ears as she is too old and stiff to roll over onto her back .... !

[greygoose in reply to Marz]

I think Demelza is more of a doggo than a pupper! lol But, you don't know your Cheeseburger, Marz! lol

[Marz in reply to greygoose]

...there is so much I do not know gg - never had a cheeseburger or a Coca Cola

[greygoose in reply to Marz]

I've never had a cheeseburger, either - ugh! But I was being naughty, there, and referring to the site Cheeseburger :

icanhas.cheezburger.com/tag...

They invented the names Doggos and Puppers and many more. It used to be all the rage, a few years ago, and I used to start my day by browsing the cartoons, photos and memes. It set me up for the day. But, the site has gone off, recently, and I don't bother anymore.

[Marz in reply to greygoose]

Thank you for educating me oh wise one I have obviously had a sheltered life ..... !

[greygoose in reply to Marz]

lol Well, you haven't really missed much!

[Hidden]

My experience is that Lyme disease affects the uptake of thyroid meds resulting in TFTs being meaningless.

[Lymita in reply to Hidden]

Hi Cinnamon Girl, thanks so much for your input.

Does this mean that the meds will also be useless? I am honestly considering taking her off both synthetic and natural but I don't know enough about it to be brave enough to do it just yet.

[Hidden in reply to Lymita]

Lymita surprised that your daughter isn't under the care of a paediatrician rather than an endo. Is this something you could insist on especially as you sound as though you've lost confidence in this endo? Also your ranges are different to the UK which makes it difficult to comment.

Shortness of breath and palpitations can be attributable to Lyme as can be swollen glands and nausea. Is your daughter under a Lyme doctor/functional medicine person or are you treating yourself using the Cowden protocol?

[Lymita in reply to Hidden]

Cinnamon_girl, thanks for asking.

She is under the care of one of the best tick-born disease specialists in the country who has a clinic dedicated to treatment of Lyme. He is the one who recommended the Holistic Endocrinologist. However, he is a very busy man and difficult to communicate with, and since we live so far away we are unable to see him personally as often as we would like.

It does make sense to send him these questions, as our endocrinologist isn't answering.

Saludos!

[Hidden in reply to Lymita]

Lymita how does a holistic endocrinologist differ from a non-holistic endocrinologist? Does he specialise in diabetes and/or thyroid? Here we find most are diabetes specialists and know nothing about the thyroid.

I'd be inclined to check his credentials and find patient reviews for my own peace of mind as it does sound as though he's not sure what he's doing.

[Lymita in reply to Hidden]

Here in Mexico I have encountered a number of incompetent "specialists". Supposedly what makes the endocrinologist holistic is that she only subscribes natural treatments like Armour and no synthetics like Euthyrox or Levothyroxine.

The clinic itself comes highly reviewed, but I am starting to realize that has little to no correlation to each of the Doctors working there. Unfortunately after a thorough search I haven't found much on our Dr. Overdoser.

Sigh. It is so hard trying to find a decent doctor that even accepts there is a link between Lyme and Hypothyroidism, let alone one that will prescribe Armour. I have put my trust in doctors time and time again and have very often been disappointed.

When the endo diagnosed such a high dose I questioned her a few times because it just didn't seem right to me. She said we had to gradually wean my daughter off the Euthyrox, which I'm beginning to see is not necessary, but please anyone correct me if I'm wrong. Once we started noticing the shortness of breath I let the doc know and she said it was altitude/travel adjustment. ??? We returned to our home (at sea level) via a three hour layover in Mexico City (2250m) after visiting her office (at sea level). ???

I questioned and questioned and she kept telling me to wait it out. Finally after my daughter began experiencing a pounding heart beating out her chest after mild exertion and even while resting, I called again and she finally lowered the dose of Euthyrox to half. In my brain that is still way too much.

We ran the tests this morning and skipped the thyroid meds. Doc still hasn't responded to my concerns and I am just simply overwhelmed.

I feel so terrible for yet again trusting the "professional" and not researching on my own. Lyme is just such a complicated illness with the treatment protocol, detoxing, healthy food prep, herxing etc. It is just so time consuming and emotionally draining. I guess I was just hoping that the thyroid problem would eventually just go away on it's own or at the very least, be treated competently by a knowlegable doctor. But now I see it's important to invest more time and energy doing my own research. I'll also definitely be looking for a new hormone "specialist".

Sorry for the ramble, I think all I really need right now is a hug.

[Hillwoman]

When one starts taking Armour or another DTH brand, it's necessary to titrate slowly and carefully, especially if the patient is taking levo/T4 already.

I'm aware that Lyme can lead to thyroid problems, but I don't know whether or not these will resolve on their own. Hidden knows more about Lyme than I do. However, it's not unusual for acute thyroiditis to emerge during and after a viral infection of any kind. A personal example: I've recently had a bout of thyroiditis after catching a mild virus that gave me a sore throat. Besides the sore throat and tender lymph glands, the left lobe of my thyroid swelled, pressing on my wind pipe (very uncomfortable), and it also became a little tender. The virus went after a few days, but the thyroiditis is resolving more slowly. It is improving though. Let's hope your daughter's thyroid troubles eventually resolve as her Lyme is being treated successfully.

[Lymita in reply to Hillwoman]

Thank you Hillwoman, I am learning so much more from you nice people than I have from all the endocrinologists we've seen combined.

I am pretty frustrated right now and I am having trouble getting my head around why our Doctor would have prescribed such a high dose.

Your bout sounds very similar to what happened with my daughter. She was ill with a very sore throat twice in December and due to her swelling of the thyroid we were led to an endocrinologist and a hypo diagnosis in January. She never had none of the typical hypothyroid symptoms and to date she continues to exhibit many of the hyperthyroid symptoms.

It's just so confusing and I really do believe it will all resolve as we heal her body from Lyme. Thank you for your support.

[Lymita]

Hello! Here are the results of my daughter's blood tests while on 50mcg Euthyrox + 1.5 grains Armour.... I know in the UK you have different measurements, so I'm including the normal ranges in brackets.

T3 Total 198.0 ng/dL (81-178)

T4 Total 13.3 ug/dL (4.5-12.5)

Free T3 7.08 pg/mL (1.5-4.1)

Free T4 1.99 ng/dL (0.89-1.76)

TSH 0.04 uUI/mL (0.4-5.5)

Protein Bound Iodine 11.04 ug/dL (4.0-10.0)

Free Thyroxine Index 3.55 ug/dL (1.1-4.2)

Ferritin 42.4 ng/mL (5-148)

We're waiting on results for antibodies, vit B12, vit D, and folate as those had to be sent to Mexico City.

After seeing these tests, the Doc recommended staying on 1.5 grains of Armour and to stop taking the 50mcg of Euthyrox. She says Euthyrox is 10x more potent than Armour and that 50mcg Euthyrox = 1.5 grains of Armour. Is she right??? I thought the equivalent of 50mcg of Euthyrox is approximately 1/2 grain Armour. Can anyone clear this up?

My daughter's Free T3 have consistently been slightly high even when only on Euthyrox. Since it's my understanding that Euthyrox contains only T4, whereas Armour has both T4 & T3. I'm hesitant to switch her to Armour for this reason. What are your thoughts?

The Doc is away on vacation and not back for 2 weeks. In the meantime I asked her if we could stick with 50mcg Euthyrox as I can't contemplate giving 1.5 grains of Armour as an equivalent substitute. Her response was, "If it makes you more comfortable, that's fine." So that's what we'll be doing for now until I can find more answers.

I would appreciate so much hearing your comments, thoughts, suggestions or support. There aren't any decent doctors in my little town and scouring the internet just leaves me more confused and deflated.

Gracias amigos!

[Hidden in reply to Lymita]

Lymita can only suggest following your instincts, I do believe we have to trust in ourselves to do the right thing.

Are those ranges applicable to a 11 year old child? It does sound as though this holistic endo is out of her depth, is there anyone else you could see?

[Lymita]

We finally have the results for the antibodies. Here they are, with normal ranges in brackets.

Anti-thyroid antibodies: Positive (Negative)

Anti-peroxidase antibodies: 156.0 UI/mL (0 - 9)

Thyroglobulin antibodies: 1.4 UI/mL (0.1 - 4.0)

I don't have anything to compare this to as this was the first time we tested for them. Could the extra dosage of Armour be the cause of the antibodies being wonky? Should we be concerned? Both our doctors are on vacation until later this week so I hope someone here can help to make sense of this.

We also tested her Vitamin D, B12 & Folate, and they were all normal.

[Marz in reply to Lymita]

Hi - just spotted your post above. Am afraid it will be missed. So better to put all results into a new post so you have more response.

It looks like Hashimotos ..

What were the results for B12 - VitD & Folate ? Normal or OPTIMAL 😊😊