Low TSH, Graves, LDN, B12 intolerance?

[NilaJones]

Hi everyone

I have been worse this year, and especially the past few months. I was finally able to get an appointment with my primary care doc. She tested me for a bunch of stuff, and found TSH was low at 2. Retested after 3 weeks, same result.

I have never had thyroid issues (that showed up on tests). Am doing some crash-course reading, but am exhausted and brain foggy and reading gives me worse PEM, so I would be grateful for any tips.

From what I have read so far, I am thinking to request the following tests, and, after them, start on LDN and see how that goes. (I have some LDN, but had been waiting, ironically, until I FELT BETTER before trying it for general ME/CFS sx.)

Does this seem like a good plan?

Tests:
TSI
TrAb
maybe anti-TPO, relates to peroxide and methylation
cortisol, maybe other adrenal
sex hormones

Other info:

I have been doing a methylation protocol for a couple of years, but never tried LDN or l-carnitine. My methylation protocol only includes 1mcg (not mg) of b12 because I cannot tolerate more.

My grandmother was hyperthyroid. I am guessing maybe the methylation has uncovered pre-existing tendencies towards hyperthyroidism... or maybe tweaked my peroxides in a weird way? Maybe that is why I cannot tolerate b12?

I am 49 and still menstruating.

@caledonia, do you have any insight on the b12 /peroxide / thyroid connection? I am so brain fuzzy today, but I think there may be something there.

 

[barbc56]

Are you getting your Grave's disease treated or did I misread your post? I would get that done before trying the other treatments. It might resolve your other symptoms.

Hyperthyroidism can do a lot of damage if left untreated. Especially the heart.

http://www.endocrineweb.com/conditions/hyperthyroidism/hyperthyroidism-complications

My grandmother, two aunts and possibly my mother had Graves' disease. It tends to run in families. At one time I was hyperthyroid. I'm now hypothyroid.

Good luck.

 

[NilaJones]

Thanks, @barbc56 .

I definitely do plan to treat the Graves.

LDN is a treatment for Graves. I am asking whether folks here think it might be the best one to start with.

 

[daisybell]

Hey, I have Graves... LDN seems to help keep my thyroid levels normal - I don't know this but I haven't had any issues with my thyroid since I started on LDN... I did have to take carbimazole when I was originally diagnosed but I can't tolerate it any longer.

 

[caledonia]

Consider that you may have mercury toxicity. The best info is from Andrew Cutler. See the info for Andrew Cutler frequent dose chelation in my signature link. There is info for how to test and get it interpreted. How to remove fillings safely if you have any. How to chelate safely.

My autoimmune thyroiditis resolved some time after I got my last mercury filling out a few years ago.

I've finally been able to get started with Cutler chelation - 3 rounds under my belt so far.

 

[NilaJones]

Thank you, @daisybell and @caledonia !

Caledonia, I was just reading about mercury yesterday, including some of your posts. I seem to be a good candidate, as I have a LOT of fillings.( I take super good care of my teeth, but they get cavities anyway. It may be EDS relsted.)

I don't have dental insurance, though, and am not sure how I could afford to replace the fillings. I do make sure all new ones are the white stuff, so that's about 50% of them now.

Any tips on cost? I am not well enough to travel to a dental school. I'm in the US, so the cost would be thousands of dollars.

 

[Mij]

@NilaJones I thought a TSH of 2 was good. Mine was at 1.9 a few months ago.

 

[NilaJones]

@NilaJones I thought a TSH of 2 was good. Mine was at 1.9 a few months ago.

Well, I would like to hear more about that, from you and anyone else! I don't know muh about it. The lab flags it as low, as does my GP.

 

[Mij]

@NilaJones yes I hope those more knowledgeable will join in because there has been discussions here about a new standard for TSH levels, it should be around 2.

My integrative functional doctor and I discussed this issue a few yeas ago and he wanted mine at 2 or even lower.

 

[caledonia]

Thank you, @daisybell and @caledonia !

Caledonia, I was just reading about mercury yesterday, including some of your posts. I seem to be a good candidate, as I have a LOT of fillings.( I take super good care of my teeth, but they get cavities anyway. It may be EDS relsted.)

I don't have dental insurance, though, and am not sure how I could afford to replace the fillings. I do make sure all new ones are the white stuff, so that's about 50% of them now.

Any tips on cost? I am not well enough to travel to a dental school. I'm in the US, so the cost would be thousands of dollars.

From what I hear, it can be expensive, as you're saying. I wasn't so aware of the issue until about a year ago, so I did what you're doing - gradually replacing them with white ones as they went bad.

How many do you have left?

 

[CFS_for_19_years]

She tested me for a bunch of stuff, and found TSH was low at 2.

The normal range for TSH for adults aged 21-54 years is 0.4-4.2. Are you sure the result they gave you wasn't 0.2?
http://emedicine.medscape.com/article/2074091-overview
The concentration of TSH in circulation is expressed as milli-international units of biological activity per liter of serum (mIU/L). Did the lab report your value using the units mIU/L? European countries sometimes use units that differ from those used by the US. What exactly was the normal range that your lab used for reporting TSH values?

 

[Paralee]

@NilaJones , 2 is not low. I think @CFS_for_19_years might have something with 0.2. The new standards (that most doctors ignore) is 0.3-3.0.

 

[NilaJones]

Hello all --

I was too sick to post for a few weeks.

Yes, @CFS_for_19_years , you are correct -- it is 0.2. I cannot even read right .

I have been trying to do some reading on the issue, though, and I found that there is new evidence that there is a connection with my yersinia bacteria. Antibodies to yersinia are attacking my thyroid . (IIUC, this was first thought to be true, then maybe not, and the most recent evidence looks pretty convincing that it is accurate after all.)

Is anyone here dealing with yersinia besides the inestimable @msf ? I wasn't sure whether I should post or just message him directly.

I guess I need to deal with the yersinia before I take immunosuppressant drugs/herbs to address the thyroid problem, otherwise the yersina will proliferate, yes? I could not tolerate the oral cefuroxime + doxycycline prescribed for it last summer. There was another ab option, but it was contraindicated due to my tendon problems. Is there any newer option?

I guess I cannot consult KDM because I have not been able to get an appointment with him within the last 12 months.

I am so sick and I do not know what to do, which way to go. I am writing this in a rare moment of clarity, and grateful for any suggestions.

 

[NilaJones]

Here is a 2015 list I found, abx that kill yersinia. Do any of you like or hate some of these for me?


Y enterocolitica is usually susceptible in vitro to aminoglycosides, chloramphenicol, tetracycline, trimethoprim-sulfamethoxazole (TMP-SMZ), piperacillin, ciprofloxacin, and third-generation cephalosporins. Isolates are often resistant to penicillin, ampicillin, and first-generation cephalosporins, as the organism often produces beta-lactamase. Clinical failure with cefotaxime has been reported.[54] Resistance to macrolides and fluoroquinolones is also sporadically reported.[55]
Clinically, Y enterocolitica infection responds well to aminoglycosides, TMP-SMZ, ciprofloxacin, and doxycycline.

(Source: http://emedicine.medscape.com/article/232343-medication#1)

 

[daisybell]

How do you know you have a yersinia infection?

 

[NilaJones]

How do you know you have a yersinia infection?

KDM tested for it. Not sure if it was the poop or blood test.

 

[daisybell]

But that probably means you have antibodies to yersinia, not that you currently have any infection surely?
In which case, I don't see the relevance - and I wouldn't be looking for 'treatment' in your shoes...
We should have antibodies to every infection we've ever had still circulating in our bloodstream. It doesn't mean they're a problem.
If your TSH is low, I'd be wondering if you have thyroid antibodies which would signal autoimmune thyroid disease.
I'm currently in remission from Graves, and if I was in your position, I would start the LDN. But that's just me - and also I know that I have problems with the standard thyroid meds to reduce thyroid levels...

 

[NilaJones]

But that probably means you have antibodies to yersinia, not that you currently have any infection surely?
In which case, I don't see the relevance - and I wouldn't be looking for 'treatment' in your shoes...
We should have antibodies to every infection we've ever had still circulating in our bloodstream. It doesn't mean they're a problem.
If your TSH is low, I'd be wondering if you have thyroid antibodies which would signal autoimmune thyroid disease.
I'm currently in remission from Graves, and if I was in your position, I would start the LDN. But that's just me - and also I know that I have problems with the standard thyroid meds to reduce thyroid levels...

Well, KDM said that the Yersinia was an active infection and not just old antibodies. Maybe @msf can shed some light?

I am working on getting thyroid antibodies tested, and saliva cortisol (does anyone know who has the best price on that?)

Have you read up on how the antibodies that attack the thyroid in Graves' are
antibodies to other things, usually yersinia, EBV, CMV, or others of our favorites around here? When I wrote my OP I was thinking it was just yersinia, but now I understand it is about 10 things... many of which I have. So I am even more unsure how to proceed.

 

[daisybell]

That doesn't make sense to me....why would antibodies to other things attack the thyroid?? Surely antibodies are specific to a particular virus/bacteria, and have receptors that fit to that particular body.
Maybe I'm just showing my lack of knowledge, but it doesn't add up to me.
Thyroid auto-antibodies attack the thyroid, sure...

 

[NilaJones]

That doesn't make sense to me....why would antibodies to other things attack the thyroid?? Surely antibodies are specific to a particular virus/bacteria, and have receptors that fit to that particular body.
Maybe I'm just showing my lack of knowledge, but it doesn't add up to me.
Thyroid auto-antibodies attack the thyroid, sure...

The answer is that they have the same receptors (which they probably use for different purposes).

For example, see this paper:
Thyrotrophin (TSH) binding sites on Yersinia enterocolitica recognized by immunoglobulins from humans with Graves' disease.
P Heyma, L C Harrison, and R Robins-Browne