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Likely a non-issue, but....
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JVinNE Offline

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Post: #11
RE: Likely a non-issue, but....
(04-13-2015 07:39 PM)Mark Douglas Wrote:  Oooo you punched one of really touchy buttons! I still have my thyroid way too much of it in fact. It is doing something though not enough so I cannot directly relate.
What I can say is TSH is Absolutely Not the holy grail of thyroid tests. I'm a service engineer (ret) and I want all the numbers but to borrow a phrase around here if a thyroid doc tells me the sky is blue I'm gonna go look.

If the body does not correctly convert T-4 to T-3 or the the pituitary has "corrupted code" you have a serious problem. Nothing short of a full panel is really useful.
If you are old enough to remember the Brit show "The Prisoner" ..... I AM NOT A NUMBER! Treat my symptoms not my numbers!
I fired a lot of MDs until finally finding one who is at least semi- enlightened.

I have learned incremental changes in thyroid meds need time to settle so best to sneak up on the correct dosage.


Rant off.

I have to because you mentioned The Prisoner. I LOVE that show!

(04-13-2015 07:39 PM)Mark Douglas Wrote:  Oooo you punched one of really touchy buttons! I still have my thyroid way too much of it in fact. It is doing something though not enough so I cannot directly relate.
What I can say is TSH is Absolutely Not the holy grail of thyroid tests. I'm a service engineer (ret) and I want all the numbers but to borrow a phrase around here if a thyroid doc tells me the sky is blue I'm gonna go look.

If the body does not correctly convert T-4 to T-3 or the the pituitary has "corrupted code" you have a serious problem. Nothing short of a full panel is really useful.
If you are old enough to remember the Brit show "The Prisoner" ..... I AM NOT A NUMBER! Treat my symptoms not my numbers!
I fired a lot of MDs until finally finding one who is at least semi- enlightened.

I have learned incremental changes in thyroid meds need time to settle so best to sneak up on the correct dosage.


Rant off.

By the way, my primary care doctor and my gyno both refuse to have me tested for Hashimoto's Thyroiditis, even though both my mother and half-sister have it. They tell me that because my thyroid levels are normal, there is no need to test for it. Are they correct?
(This post was last modified: 04-14-2015 08:44 AM by JVinNE.)
04-14-2015 08:42 AM
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DariaVader Offline
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Post: #12
RE: Likely a non-issue, but....
(04-14-2015 08:42 AM)JVinNE Wrote:  By the way, my primary care doctor and my gyno both refuse to have me tested for Hashimoto's Thyroiditis, even though both my mother and half-sister have it. They tell me that because my thyroid levels are normal, there is no need to test for it. Are they correct?

no, they are not. it is sheer stubbornness not to test for antibodies and do a full panel, if you have possible symptoms and a family history. A lot of Docs just don't like being told what tests they should run. Normal TSH is only a portion of the story. Hashimoto's is autoimmune. when it first begins you can get a flu like illness, and then become hyperthyroid as the gland dumps its load into your system. It goes through many cycles of dump (hyper) empty (hypo) fill-up and dump again. While it is doing that you can have terrible symptoms and a "normal" TSH - which the reference range used in the US is too wide for. I did not have Hashimoto's, but my thyroid behaved in a similar way, except the result was a huge multinodular mass in my neck instead of hypothyroid. Until I got on synthetic hormone I had symptoms of both hyper and hypo with slightly elevated T4/T3 levels and a slightly low TSH.

هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه
Tongue Suck Technique for prevention of mouth breathing:
  • Place your tongue behind your front teeth on the roof of your mouth
  • let your tongue fill the space between the upper molars
  • gently suck to form a light vacuum
Practising during the day can help you to keep it at night

هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه
(This post was last modified: 04-14-2015 11:48 AM by DariaVader.)
04-14-2015 09:32 AM
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Mark Douglas Offline

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Post: #13
RE: Likely a non-issue, but....
What DV said.
I have found if I ask leading questions but do not try "tell" anything I get better results. Sometimes even conflicting statements. "Well of course from my understanding of my test results I do not have Hashimoto's" at which point I am told in so many words "stupid patient I'll decide these things" and off I go with a script for a sonagram. Pitiful I know but what can ya do? Current Doc was an engineer before MD and I keep detailed contemporaneous logs and find if I show up with the data he is quite willing to consider my thoughts. Tells me based on sonagram report my Hashimotos has been going on for at least 20 years and quite possibly 30 - which almost exactly coincides with my weight gain. I led a very active life working outside with substantial amounts of physical labor yet the weight gain was slow but unrelenting. I surely wish some Doc years ago had given my complaints credence instead of giving me a script for antidepressants and shown me the door.
Ultimately I learned I am responsible for getting my needs whatever they are met.

I use my PAP machine nightly and I feel great!
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04-14-2015 11:17 AM
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DocWils Offline

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Post: #14
RE: Likely a non-issue, but....
(04-14-2015 08:42 AM)JVinNE Wrote:  By the way, my primary care doctor and my gyno both refuse to have me tested for Hashimoto's Thyroiditis, even though both my mother and half-sister have it. They tell me that because my thyroid levels are normal, there is no need to test for it. Are they correct?

Difficult to say, not seeing your history and not knowing where you are - the latter because different countries and states have different rules about wide-panel testing due to the costs. If you are in Ontario, for instance, it would be unlikely they would concede, and in several states in the US the same is true, as it is here if you are under Allgemeine insurance (general insurance).

However, that said, thyroid levels are a good rule of thumb indicator if any is wrong in such a case, since the main diagnostic is based on the same thyroid tests as are normally carried out in general thyroid testing, looking for raised antibody levels, etc, , but it is unfortunately also only something that shows up once things are already "going south". Early testing to see if you are prone to it don't really exist in any real way, only testing to show the disease is already present and active. There are good reasons to refuse more testing without an indication of Anti-TPO in the serum, mostly expense and insurers not wishing to incur the costs when there is no indication that something may be wrong, since there is no simple testing procedure for full confirmation, and expensive and intrusive histological tests are needed to confirm the presence of the disease in full force. Without a clue as to it being there in the first place from normal testing, it is common to refuse to investigate unless you have a very sympathetic doctor or live in a country where the costs are not a problem.

It is further complicated by the fact that Hashimoto's is easy to misdiagnose, given that early symptoms could be just about anything else instead. But, given that you have it in the family, flu-like symptoms, depression, weight gain, etc should ring alarm bells for your doc.

In my practice I have come across it a few time during differentials when the patient was seronegative, but it fit the orthopaedic problem (painful joints and ligaments without clear swelling or raised local temperatures) better than any bone or muscle injury. In such cases, I referred the patient to a preventative round of tests, some at least which would have had to carried out anyway in the diagnosis of the other symptoms present. In each case celiac disease was also found and patients were put on gluten free diets to good effect. The relationship between Hashimoto's and celiac disease is still controversial, but in Switzerland we tend to approach the patient a bit more holistically anyway than in the rest of the Western world, so accepting such an idea is not too far fetched for us.

By the way, Hashimoto's was the first disease to be recognised as an autoimmune disorder. And the first in Western medicine to be named for (and discovered) by a Japanese practitioner (1912, if I recall correctly). Wow! My old study exams are all flooding back into my head! Considering that I can't remember what I ate for lunch, that is something......
(This post was last modified: 04-14-2015 09:18 PM by DocWils.)
04-14-2015 05:00 PM
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TyroneShoes Offline

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Post: #15
RE: Likely a non-issue, but....
We might be looking at epidemic levels of thyroid issues not that far down the road. "Modern" farming techniques have depleted needed minerals from our soil. Plants get weaker from this and need increasing amounts of pesticides to thrive. All of this makes food taste terrible, so Monsanto and others add high fructose corn syrup to help the medicine go down. Table salt is not universally iodized as it once was. We could look to kelp as a source of iodine and iodide, but we've overfished and polluted the oceans so badly that it is hard to get kelp without getting lots of harmful things right along with it, such as arsenic. We've got buckets of kelp, but little that can be harvested safely. All of those things could spell dire consequences if something is not done, and it looks like nothing ever will be done.

That's not your immediate problem, but it might be everyone's immediate problem at some point in our lifetimes.

On that happy note, as far as AHI creeping up slightly, I don't want to wind you up about this, but one cause of this could be related to older masks. I have seen AHI creep up at the end of my 3-month use of NPs, and I have seen this reported by others. When was your mask last replaced?
04-14-2015 08:22 PM
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DariaVader Offline
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Post: #16
RE: Likely a non-issue, but....
(04-14-2015 08:22 PM)TyroneShoes Wrote:  On that happy note, as far as AHI creeping up slightly, I don't want to wind you up about this, but one cause of this could be related to older masks. I have seen AHI creep up at the end of my 3-month use of NPs, and I have seen this reported by others. When was your mask last replaced?

It was replaced in April, and the pillows are all newish too. altho i am cycling now between different ones. maybe it was the oldest of them causing that. I mark them so i can tell how old they are Big Grin but they "flap" in my nostril when they start to get soft, and i hate it.

هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه
Tongue Suck Technique for prevention of mouth breathing:
  • Place your tongue behind your front teeth on the roof of your mouth
  • let your tongue fill the space between the upper molars
  • gently suck to form a light vacuum
Practising during the day can help you to keep it at night

هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه
04-14-2015 11:57 PM
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GrammaBear Offline

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Post: #17
RE: Likely a non-issue, but....
(04-14-2015 11:57 PM)DariaVader Wrote:  
(04-14-2015 08:22 PM)TyroneShoes Wrote:  On that happy note, as far as AHI creeping up slightly, I don't want to wind you up about this, but one cause of this could be related to older masks. I have seen AHI creep up at the end of my 3-month use of NPs, and I have seen this reported by others. When was your mask last replaced?

It was replaced in April, and the pillows are all newish too. altho i am cycling now between different ones. maybe it was the oldest of them causing that. I mark them so i can tell how old they are Big Grin but they "flap" in my nostril when they start to get soft, and i hate it.

Silly question......how do you mark them so as to tell their age?
04-15-2015 07:07 AM
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OpalRose Offline

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Post: #18
RE: Likely a non-issue, but....
DariaVader,
My nasal pillows also flap in my nose when they get old, which drives me crazy.Crazy
Also, agree with TyroneShoes... I noticed when my P10 mask reached the 3 month mark, my AHI started to creep up. Also noticed at that point, the amount of air coming from the exhaust is less. I have no scientific numbers to support this, only by holding my hand in from of exhaust and noticing the difference.

Daria, I have the same question as GrammaBear, how do you keep track of pillows when you cycle them? I just keep using the same one till it wears out, then replace.

OpalRose
(This post was last modified: 04-15-2015 08:05 AM by OpalRose.)
04-15-2015 08:02 AM
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DariaVader Offline
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Machine: Resmed S9 AutoSet
Mask Type: Nasal pillows
Mask Make & Model: Airfit P10 for Her
Humidifier: H5i humidifier with ClimateLine heated hose
CPAP Pressure: 8-15
CPAP Software: SleepyHead

Other Comments: diabetes II, Thyroidectomized, Primary Immune Deficiency, and the list goes on :P

Sex: Female
Location: Oregon

Post: #19
RE: Likely a non-issue, but....
(04-15-2015 07:07 AM)GrammaBear Wrote:  Silly question......how do you mark them so as to tell their age?

Big Grin

Sharpie Big Grin (A, B, C,...) newest having no mark

[Image: CocoSharpie.jpg]

هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه
Tongue Suck Technique for prevention of mouth breathing:
  • Place your tongue behind your front teeth on the roof of your mouth
  • let your tongue fill the space between the upper molars
  • gently suck to form a light vacuum
Practising during the day can help you to keep it at night

هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه
(This post was last modified: 04-15-2015 09:42 AM by DariaVader.)
04-15-2015 09:42 AM
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GrammaBear Offline

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Other Comments: Type 1 diabetes - using Tandem T-slim insulin pump, Dexcom G4 CGM

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Location: northern Illinois

Post: #20
RE: Likely a non-issue, but....
(04-15-2015 09:42 AM)DariaVader Wrote:  
(04-15-2015 07:07 AM)GrammaBear Wrote:  Silly question......how do you mark them so as to tell their age?

Big Grin

Sharpie Big Grin (A, B, C,...) newest having no mark

[Image: CocoSharpie.jpg]

Now you have my curiosity up......because I've done exactly what you do and I mark them on the edge. However, the mark always seems to wash off when I clean the pillows in the morning Unsure
04-15-2015 12:37 PM
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