HealingWell
Search Close Search
☰

Lyme hormonal issues - how do you balance it (adernal / thyroid)

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/14/2023 5:36 PM (GMT 0)
Hello.

I’m 19 year old guy, and since few months I started to notice very significant apperance changes.

I’m treating Lyme since 9 months - those appearance symptoms started to show when I got Lyme symptoms, but since few weeks they’re much worsier and noticable.

I always had very thick hair, and now my hair became thin ( like 50% what it was) with very weird structure - it looks coarse and it’s very hard to style.

My face is looking very weird and I’m not looking like myself - it’s puffy as hell, I have heavy eye bags and I’m looking very bad - all my friends are noticing that.

I also noticed dry skin, my voice changed (it’s lower and hoarse) and my body looks very ,,heavy”.

All that symptoms seems like hormonal issues which is very common in Lyme as I read.

It seems more like Hypothyroidism, but I wonder about Adernals too.

I read that some of LLMDs are balancing / supporting hormones during treatment to remove some of the symptoms and improve the quality of life during treatment.

I know that cause is infection, but treatment is pretty long so at least we can remove some symptoms in the meantime.

I did bloodwork - my TSH is pretty high (4,2 with 4,3 max lab range) and FT3, FT4 is low but in range. It looks like minor Hypothyroidism, but on Marty Ross site I’ ve read that you should not rely on lab results 100% in Lyme, especially with the hormones.

I also had minor Hypothyroidism when I was 13, and got Thyroid hormones prescribed for about 6 months, then doc decided to get off meds as my thyroid started to work properly - I was 14.

My LLMD said he can prescribe me thyroid hormones, but he wasn’t very certain and gived it more like my choice.

He also said that sometimes they prescribe Cortisol to some patients for adernals, but it seems bit tricky and not that safe as thyroid hormones as it can supress immune system a bit.

Do you balance / support hormones in Lyme? If yes, what do you take?
Posted 1/14/2023 6:03 PM (GMT 0)
As you might have noticed there is a threat on this right now but more pointed towards that individuals needs.

Your needs seem to be a little less, But in my opinion, yes you should treat these along with lyme.

Your body is already in chaos so this is one less chaotic thing for your body to handle. However, your hormones probably will not completely resolve or be easier to manage until these infections are gone, even with meds or supplements to support the hormones. Still it will be better than doing nothing.

You did not mention thyroid antibody testing which it would be good to know if you have that or not. Hashimoto’s can be more difficult to treat and has worse symptoms than regular non-autoimmune hypothyroid.

If your lab values were much worse I would say you definitely need thyroid medication. You are hypothyroid however have you tried any supplements for this some of them actually work apparently if you’re not that hypo.

As far as adrenals go- You can Google adrenal adaptogens. You should also get a four-point saliva cortisol test so you’re not guessing, ZRT Laabs seems to be the most popular one unless there’s something better today.

If that test shows your cortisol to be really low , Then it’s probably best for adrenaline medication from an actual doctor.

Note – some people circadian rhythm can be 12 hours off of these infections. That Can affect cortisol levels being the wrong amount for the wrong time of day. Mine was like that fpr a while and I used adaptogens to lower energy and increase crease energy when needed. As far as thyroid goes I used medicine and still do.
Posted 1/14/2023 6:15 PM (GMT 0)
i take thyroid hormones because my TSH got to 12 or 13 and my T3 was low and i had thyroid antibodies

the consensus of most of the latest research is that there is little or no benefit in treating when TSH is below around 7

in actual fact i am treating s more of a kind of insurance policy in case it helps - i cant say having the thyroid meds has actually helped anything - and my thyroid results started to go out of range before i became ill with lyme and at that point i was still mountain biking in the hills for 4 hours a day - so i really dont think it is a big driver of symptoms - even at 10 or 12 TSH
people can get TSH of 100+ when their thyroid is in really bad shape.

as you mention - a significant number of people report problems with taking cortisol / pharma equivalents - so i would be v wary of doing so if i didn't absolutely have to - often these ill effects are life changing and not easily to reverse

overall, i don't think the theory that these hormones driving your symptoms is reliable -

so i would not take medications that may not help much, if at all - and could have negative side effects - based on more of a hunch than a proven problem
significant risks of problems vs not a great chance of improvement

i would monitor TSH periodically to be safe
i would then work on gut health / diet as much as i could - as thesis usually the precursor to auto-immune issues - which the high normal TSH might indicate could be at work at a low level
so you may have chance to head it off at the pass
Posted 1/14/2023 6:22 PM (GMT 0)
If you're getting hirsutism and male pattern baldness, obviously you can try propecia or avodart which will reduce your DHT without affecting normal testosterone much.

You could also get a blood test for 17-hydroxyprogesterone to check for 21-hydroxylase deficiency, which can mess with androgen levels along with cortisol.

In general suppressing your immune system isn't much of a risk unless you start taking more than 50 mg hydrocortisone per day, or using stronger steroids like dexamethasone. A typical daily dose of 20 to 30 mg hydrocortisone shouldn't be a problem. I had much bigger problems with immunosuppression from some of the other meds I was taking (especially doxycycline, minocycline, and loratadine).
Posted 1/14/2023 7:45 PM (GMT 0)

astroman said...
As you might have noticed there is a threat on this right now but more pointed towards that individuals needs.

Your needs seem to be a little less, But in my opinion, yes you should treat these along with lyme.

Your body is already in chaos so this is one less chaotic thing for your body to handle. However, your hormones probably will not completely resolve or be easier to manage until these infections are gone, even with meds or supplements to support the hormones. Still it will be better than doing nothing.

You did not mention thyroid antibody testing which it would be good to know if you have that or not. Hashimoto’s can be more difficult to treat and has worse symptoms than regular non-autoimmune hypothyroid.

If your lab values were much worse I would say you definitely need thyroid medication. You are hypothyroid however have you tried any supplements for this some of them actually work apparently if you’re not that hypo.

As far as adrenals go- You can Google adrenal adaptogens. You should also get a four-point saliva cortisol test so you’re not guessing, ZRT Laabs seems to be the most popular one unless there’s something better today.

If that test shows your cortisol to be really low , Then it’s probably best for adrenaline medication from an actual doctor.

Note – some people circadian rhythm can be 12 hours off of these infections. That Can affect cortisol levels being the wrong amount for the wrong time of day. Mine was like that fpr a while and I used adaptogens to lower energy and increase crease energy when needed. As far as thyroid goes I used medicine and still do.

I did all antibodies blood tests, and my doc excluded Hashimoto.

From lab side it’s minor Hypothyroidism now, but most resources I’ve read are advising to be best to keep TSH lower than 2,0 in males, so I think adding Thyroid hormones will help in treatment.

Also some LLMDs like Marty Ross are saying that lab levels are not anything, because person with Lyme can have clinically lower hormones (that’s his words)

You think that T4 is enough? Some are saying that you should add Selenium and Iodine to help it convert or something

Adernals are more complicated because as the best of my knowledge there’s no similar Adernal hormone to Thyroid that is safe to take, and Cortisol can mess a bit.

Cortisol test is also bit costly (about $150) so I wonder if it’s worthy to make.

I paid about $50 for all Thyroid tests for comparsion.

I googled Adernal adaptogens, and most I see is Ashwaganda, Rhodiola and Cordyceps - that’s what you meant?

I also saw something called Adernal Cortex (it’s on Amazon fex) and it got pretty good feedback, what’s your opinion about that?
Posted 1/14/2023 7:51 PM (GMT 0)

Garzie said...
i take thyroid hormones because my TSH got to 12 or 13 and my T3 was low and i had thyroid antibodies

the consensus of most of the latest research is that there is little or no benefit in treating when TSH is below around 7

in actual fact i am treating s more of a kind of insurance policy in case it helps - i cant say having the thyroid meds has actually helped anything - and my thyroid results started to go out of range before i became ill with lyme and at that point i was still mountain biking in the hills for 4 hours a day - so i really dont think it is a big driver of symptoms - even at 10 or 12 TSH
people can get TSH of 100+ when their thyroid is in really bad shape.

as you mention - a significant number of people report problems with taking cortisol / pharma equivalents - so i would be v wary of doing so if i didn't absolutely have to - often these ill effects are life changing and not easily to reverse

overall, i don't think the theory that these hormones driving your symptoms is reliable -

so i would not take medications that may not help much, if at all - and could have negative side effects - based on more of a hunch than a proven problem
significant risks of problems vs not a great chance of improvement

i would monitor TSH periodically to be safe
i would then work on gut health / diet as much as i could - as thesis usually the precursor to auto-immune issues - which the high normal TSH might indicate could be at work at a low level
so you may have chance to head it off at the pass

As I’ve read in males it’s the best to keep TSH under 2, and currently I’ve 4,2.

When I was 13 and got diagnosed with hypothyroidism my TSH levels was about 5,1 as I can remember and my symptoms were pretty serious then - feeling cold all the time, apettite loss, insomia - so it can relly on person.

However, when it comes to Adernals I’ll probably pass on Cortisol because it seems pretty unsafe, and it can mess.
Posted 1/14/2023 8:01 PM (GMT 0)

Quin said...
If you're getting hirsutism and male pattern baldness, obviously you can try propecia or avodart which will reduce your DHT without affecting normal testosterone much.

You could also get a blood test for 17-hydroxyprogesterone to check for 21-hydroxylase deficiency, which can mess with androgen levels along with cortisol.

In general suppressing your immune system isn't much of a risk unless you start taking more than 50 mg hydrocortisone per day, or using stronger steroids like dexamethasone. A typical daily dose of 20 to 30 mg hydrocortisone shouldn't be a problem. I had much bigger problems with immunosuppression from some of the other meds I was taking (especially doxycycline, minocycline, and loratadine).

Fortunately I’m not having issues with balding, but just with hair quality / thinning - my hair structure just changed which is common in thyroid issues as I’ve read.

Hirsutizm? I’m male, so I don’t think it concerns me.

I don’t think I have problems with androgens like DHT, or Testosterone because last time I was checking it was pretty high.

However that test you was suggesting is definitely good to consider in the future.

As I know, immunosupressing steroids like Hydrocortizone are not good conecction with Lyme and it can really mess the treatment, so bad will most likely outweight the good.
Posted 1/14/2023 8:10 PM (GMT 0)
Interestingly my TSH was low.
Borderline hyper. (This was many years ago - before I was diagnosed with LD.

I believe it was .45

I would like a retest now to see if it’s gone up. Doubt if my doc will agree with retest.
Posted 1/14/2023 8:23 PM (GMT 0)
Thyroid is not about TSH in fact some doctors ignore TSH altogether. You cannot diagnose or treat hypothyroid with TSH alone. TSH is just a Signal and not a very accurate one either.

It’s about the actual hormone levels free T4 and free T3 , And how you feel at those levels with whatever specific med you are currently using for it if you are on thyroid med. These are what the cells in your body use.

For those that end up going on thyroid medication, if somebody’s been on a T3 med for a while the TSH test is even more useless.

Post Edited (astroman) : 1/14/2023 12:49:14 PM (GMT-8)

Posted 1/14/2023 8:38 PM (GMT 0)

Meymey said...


As I’ve read in males it’s the best to keep TSH under 2, and currently I’ve 4,2.

while its true that in normal very healthy people (say if you took 100 athletes) -TSH is rarely above 2 - so that's where the "ideally TSH below 2" comes from

but that is not the same as saying that in people with a TSH of say 4.5 who are treated with thyroid hormones till TSH is below 2 will feel much better for it
this it has been researched pretty well now - and treating TSH that is below around 7 has not been shown to help much with symptoms.

the reason for this is that the slightly raised TSH is likely just a sign that something else is going on in your body - and just putting in more thyroid hormones will not be likely to fix that.
maybe just the inflammation from Lyme is causing thyroid hormone conversion to be poor - and driving the TSH up a bit

But go ahead and try it if you would like - the risk from moderate thyroid hormone doses are pretty small - and there is an outside chance that it might help you a little bit - but overall i suspect that what you are attributing to thyroid hormones or adrenal hormones is really just what Lyme does to people.

ref weight gain - this is common in chronic illness - we become more sedentary / exercise less - lose muscle / gain fat.
has your physical activity level / exercise dropped off ?
what is your diet like ?

ref hair -
unusual hair growth or hair loss is a common symptom of lyme -

i had a post somewhere with my hair under the microscope - lyme made my hair coarse and brittle / easily broken - not hypothyroidism - you can actually see the hair fibres are malformed and had grown that way - will try and find a link - happened to my partner also, she actually lost around 1/2 her hair with lyme at one point - had thyroid tested and TSH was under 2.

https://forums.phoenixrising.me/threads/abnormal-hair-fibers-exploring-possible-link-to-tick-borne-illness.77648/
Posted 1/14/2023 8:42 PM (GMT 0)

astroman said...
Thyroid is not about TSH in fact some doctors ignore TSH altogether. You cannot diagnose or treat hypothyroid with TSH alone. TSH is just a Signal and not a very accurate one either.

It’s about the actual hormone levels free T4 and free T3. These are what the cells in your body use.

And if somebody’s been on a T3 med for a while the TSH test is even more useless.

all true astro - but he did say he was within range for T3 and T4 and no antibodies / Hashimoto's negative

so i just don't think he will feel much benefit from adding Thyroid meds - if i did i would say so

this kind of mild transient hypothyroidism / raised TSH is v common in infections
Posted 1/14/2023 8:47 PM (GMT 0)
Meymey-

When you ask people thyroid questions you’ll get lots of different answers. This is because people react differently to the treatments.

It’s good that you don’t have Hashimoto!

There were basically three different types of prescription thyroid medicine, of which I’ve tried all three, and then many different brand names. There used to be many more brand names and I’ve tried a lot of them over the last 25 years. There are not many choices today.

I can actually tell when my thyroid levels are low and I know what medicines actually work for me because not all of them do as far as symptoms resolve. It was a very long road that I took to figure out what works for me, I tried many things. Many failures finally lead to symptoms control management.

There are more of those examples than you asked me about I can’t possibly tell you about everything that’s available ...you’ll just have to spend more time googling it and looking at peoples comments. A lot of this is trial and error.

Since you don’t have Hashimoto’s iodine will Not do any harm. Selenium is supposed to help convert T4 to T3. I ended up taking natural pig thyroid that has both T4 and T3 in it. My body just seems to prefer the natural thyroid for some reason versus the synthetic versions,...wish that was not the case.

Post Edited (astroman) : 1/14/2023 1:07:39 PM (GMT-8)

Posted 1/14/2023 8:54 PM (GMT 0)
The ranges of both free T3 and free T4 are pretty wide. It’s really like a dimmer switch on the light. Some people will see pretty good with it on low some will not.

Each of our bodies when working correctly have hormones levels specific to our bodies. Problem is we don’t know where those were in the range.

So if someone is in the range but still on the low end of it, for many people that really is low and they benefit when they get it up into the middle range or sometimes even higher. You don’t know till you try. We live one time.

All that said if this was me , I’d try and learn more about the vast array of supplements known to help borderline hypothyroidism first. I don’t have experience with those but I’ve read countless times people saying they helped.

If those did nothing for symptoms then I’d start trying thyroid medicine and see what it does.

The fact that this is not Hashimoto is great. Even though gluten is not good for people in general you can probably still get away with eating gluten without Hashimoto.

Post Edited (astroman) : 1/14/2023 1:35:06 PM (GMT-8)

Posted 1/14/2023 9:06 PM (GMT 0)
Yes Gharzi TSH will be a little more accurate if somebody has not used thyroid medication yet. I still don’t believe it’s accurate enough though.

I have personally known and read about people with a TSH of 5 to 7, who actually felt better once starting thyroid hormone.

I have also read about and met some people Who tried some of these new thyroid support supplement Mixtures.

Not having Hashimoto, I would think these supplemental supports might have a better overall effect?


—————
This would be so much easier if we all knew what our baseline was of everything before we became ill!

Post Edited (astroman) : 1/14/2023 1:12:56 PM (GMT-8)

Posted 1/14/2023 9:26 PM (GMT 0)
“ Thyroid is not about TSH in fact some doctors ignore TSH altogether. You cannot diagnose or treat hypothyroid with TSH alone. TSH is just a Signal and not a very accurate one either.“

This is my reg doc who tested me - she may have tested FT3 and FT4 - can’t remember.

I believe Dr J tested the TSH, FT3 and FT4 - that would have been several years later. Don’t recall the results.



I should look at my old lab reports. (If I can find them)

I think my LLND (who I saw prior to dr J) tested the reverse T3 along with the FT3 and FT4
Posted 1/14/2023 11:23 PM (GMT 0)

astroman said...
Yes Gharzi TSH will be a little more accurate if somebody has not used thyroid medication yet. I still don’t believe it’s accurate enough though.

I have personally known and read about people with a TSH of 5 to 7, who actually felt better once starting thyroid hormone.

I have also read about and met some people Who tried some of these new thyroid support supplement Mixtures.

Not having Hashimoto, I would think these supplemental supports might have a better overall effect?


—————
This would be so much easier if we all knew what our baseline was of everything before we became ill!

yep - i understand

here we are going down the thyroid path - but I'm just not sold on the issues described being driven by the thyroid in this instance.

i guess its possible - but with all values still within range - and no report of antibodies - i think its unlikely
that combined with the fact that there are somewhat more obvious explanations available
makes me think - in this case the 4.2 TSH is a red herring

just trying to avoid the guy going deep down the thyroid rabbit hole - which is a pretty deep hole - when it may not help much - if at all

just my 2cents
Posted 1/16/2023 12:33 AM (GMT 0)
Meymey -

If you are not getting male pattern baldness or changes in body hair, that suggests that testosterone and DHT isn't the problem.

You also did not mention any of the typical symptoms of adrenal insufficiency, such as feeling "tired but wired", irritable bowel syndrome, salt-losing or headaches, so I suspect this isn't your issue either.

The "adrenal cortex" from amazon is bits of adrenal glands from pigs and cows. It contains hydrocortisone and other hormones. If you don't want to take hydrocortisone, then I don't think you would want to take this either.
Posted 1/16/2023 12:48 AM (GMT 0)

Meymey said...
Hello.

I’m 19 year old guy, and since few months I started to notice very significant apperance changes.

I’m treating Lyme since 9 months - those appearance symptoms started to show when I got Lyme symptoms, but since few weeks they’re much worsier and noticable.

I always had very thick hair, and now my hair became thin ( like 50% what it was) with very weird structure - it looks coarse and it’s very hard to style.

My face is looking very weird and I’m not looking like myself - it’s puffy as hell, I have heavy eye bags and I’m looking very bad - all my friends are noticing that.

I also noticed dry skin, my voice changed (it’s lower and hoarse) and my body looks very ,,heavy”.

All that symptoms seems like hormonal issues which is very common in Lyme as I read.

It seems more like Hypothyroidism, but I wonder about Adernals too.

I read that some of LLMDs are balancing / supporting hormones during treatment to remove some of the symptoms and improve the quality of life during treatment.

I know that cause is infection, but treatment is pretty long so at least we can remove some symptoms in the meantime.

I did bloodwork - my TSH is pretty high (4,2 with 4,3 max lab range) and FT3, FT4 is low but in range. It looks like minor Hypothyroidism, but on Marty Ross site I’ ve read that you should not rely on lab results 100% in Lyme, especially with the hormones.

I also had minor Hypothyroidism when I was 13, and got Thyroid hormones prescribed for about 6 months, then doc decided to get off meds as my thyroid started to work properly - I was 14.

My LLMD said he can prescribe me thyroid hormones, but he wasn’t very certain and gived it more like my choice.

He also said that sometimes they prescribe Cortisol to some patients for adernals, but it seems bit tricky and not that safe as thyroid hormones as it can supress immune system a bit.

Do you balance / support hormones in Lyme? If yes, what do you take?

Ashwaganda, magnesium, vit b's non synthetic you need the real forms of it as loads of these vitamins from the stores have additives and fillers, vit c, pink Himalayan sea salt, using a sauna to sweat.

Diet for me is turkey chicken salmon , cod liver oil for omega 3 fatty acids ( for dry skin)

I still have weight loss, dry coarse hair, dry skin, white hairs started and I'm only 30! My thyroid labs always normal except on low side like 0.40. They said I had subclinical hyperthyroidism but I'm confused because it feels like hypothyroidism symptoms. Let's not forget these infections screw up everything and it's hard to tell. Lyme and co infections also cause the thin hair, dry skin and weight loss or gain. Taking antibiotics destroyed my hair and skin, gut too. I believe it's over use. Too much antibiotics cause b1 (thiamine deficiency) and more. I do all of these vit and minerals now
✚ New Topic ✚ Reply