My teenage daughter has a long history of Lyme. She is much improved but still has chronic fatigue.
I believe she is hypothyroid but can't get the proper amount of help because of her adrenals.
She has tried 1/2 grain of Armour and 1/2 grain of Nature Throid with disastrous results. This latest round caused her to be dizzy when standing up, hot and cold flashes, emotional sensitivity, more fatigue, and the worst thing a heart rate of 51. She was missing school until we stopped giving her Nature Throid and put her back on her T3 only.
Both times this has happened, she has improved quickly with a glandular adrenal supplement.
Also both times she has tried the thyroid med, she has felt better at first, but quickly gotten worse. The first time within 5 days, the second time (5 months later, after lots of adrenal support), within 3 weeks.
Her LLMD wants her to try Synthroid next. He was the one that did the first trial of Armour but he doesn't know about this latest trial.
Another local doctor we have been using wants to try Westthroid at a higher dose next.
She does best on only the T3 at a very small dose. But she is still in her bed more than she should be.
She took Ashwaghanda for at least a year and has been taking the Dr. Wilson protocol for the past 5 months, but was not taking that during this latest trial of Nature Throid.
Prior to the Nature Throid, she had a saliva cortisol test which showed elevated cortisol except in the morning, when it was normal. On the Nature Throid, her symptoms seemed to me to be more low cortisol than high.
She gained about 15 pounds very rapidly and has a hard time losing it.
Can someone help me sort all of this out and decide what to do next?
[ 09-13-2014, 11:49 PM: Message edited by: jkmom ]
Posted by GretaM (Member # 40917) on :
I agree about the adrenals and thyroid. I don't know much about either-something I struggle with myself.
Just wanted to put out there, when I was having a bartonella flare, I gained weight quickly and could not lose it.
During bartonella treatment, the weight fell off.
Has she been assessed by an LL for bartonella infection?
Bartonella can mimic a lot of adrenal/thyroid issues.
And it is the very devil to get rid of.
Posted by jkmom (Member # 14004) on :
We just switched her bartonella meds this summer but she has been treating it for a while.
Her remaining symptoms are fatigue and inability to lose weight. She also has heat and cold intolerance, and she can't handle much stress. She has to take a nap every day, even if she got 11 hours of sleep.
Her thyroid tests show that she is low in T3 and T4, even by conventional standards.
Another doctor I consulted suggested we add an iodine supplement along with just the T3.
So confusing!
Posted by sixgoofykids (Member # 11141) on :
How are her iodine and selenium levels?
Posted by jkmom (Member # 14004) on :
Her iodine and selenium levels have not been checked. I am wondering about this though because I use sea salt that does not have iodine in it. She does not eat processed food so she doesn't get much iodized salt.
Posted by Pocono Lyme (Member # 5939) on :
It sounds like she needs a doctor who specializes in thyroid, adrenals, hormones,... My first LLMD tried to treat my adrenal fatigue with supplements and later a low dose of Cortef.
None of it helped. Two years ago I searched for a bio-identical hormone replacement doctor successfully. Despite "normal" labs for thyroid function, he felt I was hypothyroid.
He couldn't test me for adrenal fatigue as I had been using cortisone cream. He was aware of my previous testing done years prior.
He started me on very low dose of Armour Thyroid 15mg tab and to increase by one tablet each week. I couldn't do it. It was also disastrous.
I emailed him when I was able and he said that the only known explanation for that happening with thyroid meds is adrenal fatigue.
He put me on Hydrocortisone four times/day and within three days I was on 120mg of Armour Thyroid.
This has helped me tremendously. No more "life has been sucked out of me" fatigue.
You can check these out. I found my doctor by calling pharmacies. Compounding pharmacies are most helpful but I got info from a regular pharmacy. http://www.thyroid-info.com/topdrs/index.htm#us
I forgot to add that he recently put me on an iodine supplement (12.5 mg twice/week). That was mostly for breast health as I had suspicious mammograms.
Posted by elainer97 (Member # 33917) on :
Jkmom, there is a book called Stop the Thyroid Madness by Janie Bowthorpe. She has a website also (stopthethyroidmadness.com). Both are wonderful with tons of info.
I have a long thyroid history, but in short, I am in the process again of trying to address it. I'm trying to get my ferritin up to at least fifty (preferably 70-90) and I need to do a 24hr cortisol saliva test and see if I need hydrocortisone.
These 2 issues caused me to go into hyperthyroid a few yrs ago when trying to get to an optimal Armour dose. After that, couldn't even take the lowest dose of it. I'm on T3 only right now.
The author also understands that Lyme and co complicates thyroid treatment.
The thing that amazes me is how many symptoms are shared between hypothyroid and TBDs. I've been treating a little over 2-1/2 yrs and tho better in a lot of areas, still sick. My thought is, since I know I'm still hypothyroid, I need to try again to fix that because I don't want to be unknowingly trying to fix thyroid problems with more rounds of antibiotics.
If you go to the website, just explore it all. Maybe you'll find some answers. There are also many patient experiences on there and if they weren't writing that they got well with proper doses of desiccated thyroid (in the presence of optimal iron and cortisol levels), I would be telling them to consider that they have TBDs because their stories sound like ours.
I have the first edition of the book given to me by an NP that was starting to specialize in bio-identical hormones and found she had no choice but also to address thyroid and adrenals.
Hope this gives you some help Posted by jkmom (Member # 14004) on :
That is a good idea to ask at the pharmacy. These two local doctors are bio-identical hormone doctors that supposedly specialize in thyroid but they don't seem to get it about the adrenals.
What does your LLMD think about your hydrocortisone?
Posted by poppy (Member # 5355) on :
The thyroid madness people are not entirely on the same page with me. They think you can't take iodine if you have "hashimotos." But lyme likes the thyroid and is probably responsible for this apparent autoimmune marker. And iodine is needed to make the T4 and T3, so I am not agreeing with them.
It is said to be necessary to take selenium, so I do.
Has she been checked for reverse T3? I would not think that would be the problem if she is only on T3, because it happens when T4 is converted to the wrong T3.
My lyme doc did help me with this at the time I started on thyroid supplementation, and it took quite a while, trying different forms. Later, though, I went to a doc who specialized in this. They are not easy to find. I apparently do not have adrenal fatigue, surprising after being sick for so long. Did have the cortisol testing.
Not understanding Pocono's post. Cortef = hydrocortisone. I was put on this as a trial but could not tell the difference, so stopped. I am on armour, which worked better than anything else, but took a while to get the dose right. This has a lag time, can't tell immediately if it is working. They changed the armour formula a while back and it does not work as well for some of us, so many get it from Canada where the formula is the original. But that is really a pain and Customs could stop it at any time.
Posted by jkmom (Member # 14004) on :
I have also noticed that her remaining symptoms could all be thyroid and adrenals and not Lyme. I am hoping this is the next big breakthrough. She just looks so good at first on the Armour that it is hard to believe it isn't a part of the answer. That is why I agreed to the next trial of Nature Throid, even though I had some concerns.
I will get the book.
I am pretty sure her LLMD does use hydrocortisone some times. He has not suggested it for her but maybe he will when he hears about this latest trial.
Posted by jkmom (Member # 14004) on :
She has not had the autoimmune markers, at least in the past. One of these doctors thinks her thyroid is causing the adrenal problem. Her last doctor thought her adrenals were causing the thyroid problem. Somehow, the Lyme is involved in this, I am pretty sure.
I should find out about her reverse T3 tomorrow. We had it checked right after this latest round of Nature Throid. I am not sure what to think if it isn't high. Would that mean her adrenals are not the problem?
The prescribing doctor thinks she needs even more thyroid medicine. Could too low of a dose make you so much worse than you started? It seems like it would give some improvement not make things worse.
Posted by Pocono Lyme (Member # 5939) on :
My first LLMD gave me a way too low dose of HC. Yes Poppy HC = Cortef. Sorry if that caused any confusion. I use HC and Cortef interchangeably.
Armour Thyroid at even the tiny dose made me way worse until I got on HC. It does take quite a while to get regulated on both although one can tell a difference rather quickly.
My current (3rd)LLMD didn't "get it" at first but after seeing my progress, is now on board and told me at my last appt. that my all of a sudden high blood pressure was adrenal crisis.
I recently have been able to get off of the blood pressure med.. My BHRT doc told me I would and he was right.
Posted by elainer97 (Member # 33917) on :
Poppy, I went back to the STTM website to double check- here is an excerpt:
"What about problems patients have reported with iodine use? Some patients have reported an aggravation of their Hashimotos symptoms after using iodine. In fact, some European and Asian countries have an explosion of Hashimoto’s cases due to immense iodine supplementation in food.
On the other side the coin, certain studies and intelligent analysis report that autoimmune problems associated with iodine use actually are the result of low selenium levels, as well as low copper or low zinc. This underscores the need for supporting nutrients. Patients also repeatedly report that their antibodies went down thanks to their iodine use! To read interesting details about the association between the aggravation of Hashimotos and the rise of antibodies, go here. Part II is here.-". (This is on their "things patients have learned" page)
They even have a post by a woman who used iodine for her hashimoto's. I want to say she stopped the autoimmunity but I'd have to reread it to be accurate.
I think they update their info when they learn new stuff.
Posted by nyclymedout (Member # 45977) on :
I am constantly waking up with heart palpitations (pounding), pain in my adrenal glands (lower back), and also experienced surging high blood pressure when I have normal BP. These feel like adrenal surges.
I did several 24 hour cortisol saliva tests and cortisol is either normal or slightly high. DHEA is typically high as well. Would Cortef help me in this situation? Are you able to wean off it or are you on Cortef and NDT forever? I also have high RT3 (poor FT3/RT3) ratio, but I do believe this is adrenal related.
Posted by Keebler (Member # 12673) on :
It’s gotten harder to lose weight and not for the reasons you think
By Sarah Kaplan - The Washington Post - October 1, 2015
by Janet Allon - Alternet - Dec 21, 2015
Excerpts:
. . . In the case of weight, the “other things” affecting our balance might have to do with our ENVIRONMENT — both outside our bodies and within them. . . .
. . . Another factor is our exposure to certain kinds of chemicals that affect the endocrine system and metabolic processes, Kuk told the Atlantic.
Plastic packaging, pesticides and substances known as persistent organic pollutants (mostly synthetic toxins that tend to bioaccumulate through the food web) may be impacting the way our bodies process food and store fat.
Increased use of prescription drugs may also play a role, Kuk told the Atlantic.
According to the Centers for Disease Control, spending on prescription drugs doubled between 1999 and 2008, the last year of the York University study.
Among adults (the subjects of the study), antidepressants were the most commonly used drug — and many, many, many studies have linked antidepressants to weight gain.
But they’re not the only culprits: Allergy medications, steroids and pain medications can also affect weight. The tiniest and perhaps least intuitive factor is innate to each of us. It has to do with our “microbiomes,” the brew of tiny organisms that live in our guts and play a role in processing food. . . .
[Full article at link above]
If she does not have a water filter, that might be a good move as many of the prescription medicines of OTHERS wind up in the drinking water.
A basic counter top New Wave Enviro with it's 10-stage filter should help.
Trying to avoid city vehicle exhaust is not easy but not driving too close to vehicles or taking side streets can help a bit.
Avoiding plastic for water, food and nonstick cookware also important due to the ENDOCRINE DISRUPTORS.
Avoiding petroleum in products that go on our skin also a help. Many person care products contain endocrine disruptors. -
Posted by Keebler (Member # 12673) on :
I agree with you that both issues - the adrenals and the thyroid are caused by the Lyme.
It sounds like you have tried a lot of thyroid options. What if you take a break from that and address the adrenals first? And then after stable there, can come back to see what needs to be done with thyroid. Seems like it would be better to do them one at a time.
Posted by nyclymedout (Member # 45977) on :
I have that book. Trying to determine if I should make the leap to cortef...Thanks!
Posted by nyclymedout (Member # 45977) on :
I have that book. Trying to determine if I should make the leap to cortef...Thanks!
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