Do I fibromyalgia

[JayCS]

uh, yes there is autoimmune to be seen... high antibodies say this loud and clear.. and it is called Hashimoto's (or Graves if you are hyper)

Well, Hashimoto's is the tendency, which my GP says we have to keep an eye on, whilst the only good endocrinologist near here says: 'it's not, despite "slightly" high MAK (anti-TPO)', meaning ~43, max should be 32. So what do I do without a doc in sight...
(I can see there is a functional specialist in the South who checks rT3 and agrees with you that the normal tests are not enough. That'd be a trip of 10 hours - but my radius is down to a maximum of 30 minutes, whether bike, car or train. Also that doc like most functional docs says some good things, but also things I don't agree with from my research, or that don't agree with me from my trials.)
As said I can only try my GP, even tho he's very timid about anything experimental. My cardio checks everything I ask her to, but if the relevant docs don't agree, and I'm already taking the supps recommended... T3 is only prescription and has quite a few side effects...

this is from the Thyroid Change website about thyroid antibody tests (backed up by research papers)... the numbers listed in the middle are the reference range numbers that the named doctors use... there are other ranges out there - they vary from lab to lab... some of which are extremely outdated.

Neither of these habe been checked, so I doubt my docs are interested in them.

It is also worth noting that many hypothyroid patients do tend to have low iron levels, as well as other nutrient deficiencies.. namely B12, D, and magnesium - but there are others as well.

I'll try to plug that I do have problems with these... thanks... I asked my cardio to check magnesium in blood red cells, but I have the feeling she isn't going to, cos she didn't check it off, but I'll see, she did want to scan my list to make sure she got it all right.

 

[johnsalmon]

Optimal levels that I have seen suggested - in multiple places - are:
TSH - 2 or less
FT4 - top half of range
FT3 - top 1/4 of range
RT3 - less than 15

I am not to sure if we use the same range down here. I believe that there has been suggestions that the range is out of date and represents only a small population. However one should remember that age has a bearing on the results the "normal high" for seniors would be higher then the current norm. Down here when we get a test the results show all previous tests also so if I get a thryoid panel down next week the results will show all results back to 2000 - down here the only advice given on the test results is if the treatment appears to be adequate or not adequate. My TSH has never been under 2 but then that could be due to a different scale down here

 

[cookiebaker]

I am not to sure if we use the same range down here. I believe that there has been suggestions that the range is out of date and represents only a small population. However one should remember that age has a bearing on the results the "normal high" for seniors would be higher then the current norm. Down here when we get a test the results show all previous tests also so if I get a thryoid panel down next week the results will show all results back to 2000 - down here the only advice given on the test results is if the treatment appears to be adequate or not adequate. My TSH has never been under 2 but then that could be due to a different scale down here

yeah, there are differences in ranges all over the world - no consistency at all.
the numbers i shared above are what are considered to be "optimal" for people in treatment, not actual ranges... but as you noted, age does play a part in all of this - however, no one really seems to know what optimal should look like for the older population (the over 70 age group). My personal take is this: if you are still suffering with symptoms, then you are not being treated "optimally", regardless of age - and there is a BIG difference between "optimal" and "in range"... you can be "in range" and still be suffering.

If you can find a copy, there is a great book that goes in depth about hypothyroidism, written by a Dr Broda Barnes, MD, entitled "Hypothyroidism: The Unsuspected Illness" - it is an older book, but still very relevant. It is not available new anymore - only used.
There are other newer books, as well, many of which reference Dr Barnes' methods of diagnosis and treatment.

the only good endocrinologist near here says: 'it's not, despite "slightly" high MAK (anti-TPO)', meaning ~43, max should be 32.

and if you look at that image again, you will note that those doctors that are more up to date on current research say the TPO should be <9 - anything higher indicates the autoimmune Hashimoto's - so, your "good endo" is using outdated ranges (most around here are as well, not uncommon)
my TPO at last check was also around 43, with the local reference range being 0-60 (talk about outdated! this is crazy old!) so according to that particular lab, I have no problems. yeah.. right

So what do I do without a doc in sight...

there are online sites where you can order your own labs - the only real trick is finding a facility near you that they work with for the blood draws. Costs are pretty reasonable from what I have seen, compared to what I was quoted at my old clinic. nearest to me is about an hour away.. but i also live in a very rural area.
Might be worth looking into, at least?
the Stop the Thyroid Madness site lists many self-order lab test sites in other parts of the world as well as in the US, on the Recommended Labs page. I dont particularly like the layout of that site (kind of messy looking), but there is a lot of useful information there.

 

[johnsalmon]

if you are still suffering with symptoms, then you are not being treated "optimally", regardless of age

you can have hypothyroidism without Hashimoto's. Hyperthyroidism has its own symptoms while Hashimoto adds a lot more so even if you take the right dose of tablet for hypothyroidism you can still have a lot of other symptoms related to the autoimmune conditions. I have my hypothyroidism under control with the dosage of tablet I take but I still have a number of symptoms from the Hashimoto and other autoimmune conditions

 

[JayCS]

the TPO should be <9

Getting confused with the different abbreviations. TPO-Ab is anti-TPO is MAK. TgAb is TAK. (AK is German for Ab, cos K = b) My latest TgAb/TAK was 14, my latest TPO-Ab/MAK was 32, same units as yours: IU/mL.
The docs named don't sound very reputable, Amy Myers for instance is one you dissed here the other day?
Kent Holtdorf: anti-aging specialist that wikipedia "does not like". Myers and Childs sell thyroid supps.
Using your argument there, they could be making money by claiming most everyone's got thyroid....?

Might be worth looking into, at least?

Well, I've spent several hours on looking for endocrinologists, as the only ones in my town were useless, my GP doesn't know anyone either, I could only find that 'good' one near enough....

 

[cookiebaker]

The docs named don't sound very reputable, Amy Myers for instance is one you dissed here the other day?
Kent Holtdorf: anti-aging specialist that wikipedia "does not like". Myers and Childs sell thyroid supps.
Using your argument there, they could be making money by claiming most everyone's got thyroid....?

not saying i particularly like these doctors - for the reasons listed - but the information is presented in an easily understandable way - thing is, that exact same info is available in other places, just not as neatly packaged.

 

[JayCS]

that exact same info is available in other places, just not as neatly packaged.

Yeah, that's good, and I do seem to need the neat package to take to my GP, so I don't get so confused...

 

[JayCS]

I do seem to need the neat package to take to my GP

Well, I didn't even need it. I just asked "what about thyroid?" yesterday, and he said the levels are OK, but we could try T4, seeing my symptoms. I did try to ask about the "neat package", but I actually forgot the German terms MAK and TAK, but maybe he was looking at them anyway.

For the side effects he told me to watch out for insomnia and pulse and report back quick if so.
The pharmacist told me to start with half a 25µg pill, so 12.5µg, my GP didn't - praps trusting I know what I'm doing anyway...
The 4-page "pamphlet" and several webpages pointed me to a whole ton of side effects, but the most difficult ones for me being seizures, additional fatigue as well as insomnia (and pulse/blood pressure) I was swaying between a daring 12.5µg and careful pixie dust knowing my MCAS-overreactions.
Luckily I finally sided on pixie dust. The 4 pix below show 1) the original pill, which I 2) then broke in half, then took that first morsel, then 3) broke the half and took that 2nd morsel, plus the powder, if I 4) put the pill together again it looks as if I haven't touched it. What's your guess, not even 1µg, ey? What do we call that, "low dose levothyroxine"? Nal trexone low dose is 10%, only few do 1%, that'd be 0.5mg compared to the normal 50mg pills. This would be about that?

First I fairly quickly got a moderate energy surge for about 3h, and a few weird feelings, not completely new ones, reminded me of cortisol, altho I read up that cortisol decreases T4, so not sure about the pharmacology of that. But the energy could have been cos I slept shorter, bit of insomnia, that does increase my cortisol.
So that was that energy-wise for today, I thought, now let's see which further effects come up. But then came my table tennis mate at 3, despite rain and me not having eaten, and I ended up trying to coax him "for science's sake" to play a 5th game, as I still had no pain and no fatigue. Remember I've hardly been managing 2 games recently. It was pouring for the 3rd time by then, and he isn't interested in medicine. So now I'm at home and amazed. Now getting a bit of histamine reactions (slightly burning tongue), so taking my "midday supps" 2 hours late, good to prevent seizures too, and eating at last. The excitement and surprising table tennis have got the better of me. Bit jittery at the moment.. What's next? Where's the backlash?

Yours truly Dr.JayCll Mr Shylok-Hide....

 

[cookiebaker]

this is what my 25mcg tablets look like - and they are TINY - only about 8mms long
would be more difficult to break these into 1/4s

knowing how sensitive you can be with medications, i think you are wise in going low and slow to see how you get on with it.
Good luck, and I hope you have positive results!