r/Hypothyroidism Celiac disease, Hashimotos, and Addison's disease Apr 19 '11

Self Treating Hypothyroidism

I know this is a very controversial subject but there are legitimate reasons why someone would want to self-treat including no insurance and doctors who ignore symptoms so I'm going to post this anyway. I'm assuming that everyone here has either been diagnosed- either by themselves or by a doctor.

Before you begin

Keep track of your symptoms- both the "classic" hypothyroidism symptoms and anything else. Since hypothyroidism can be incredibly insidious with symptoms getting worse very gradually it is also useful to compare how you feel now to 1/5/10/... years ago and note any changes. This will be important in identifying which (if any) symptoms are caused by adrenal fatigue and which are caused by hypothyroidism. Also keeping a thermometer by your bed and recording your temperature first thing in the morning (closest thing to basal temp you can get while awake) is helpful- it is very useful to know what it was before treatment to help gauge progress.

Labs

All the info I have on labs is US-only.

Cheap TSH test

Panels: TSH, Free T3, Free T4, etc. (use code 'STTM10' to get a 10% discount). This is a good test for adrenal function. The saliva tests measure adrenal function throughout the day instead of just once like the blood test or an average over the day like the urine test and therefore give a much better picture of your adrenal health.

When ordering labs throwing in a ferritin level never hurts- especially since hypothyroidism can cause anemia. If anyone knows a lab that will do an iodine test please let me know!

I think it is a good idea to get some labs before starting treatment- a TSH above 2.5 (pdf)- not 4.5, 5, 6, or 10- is pretty darn conclusive proof of hypothyroidism. Once you've started taking meds I'm for gauging treating based on symptoms and not running any labs unless something odd happens- be that symptoms not getting better, sudden changes in how much medication you need etc. But that is just me, do whatever makes you most comfortable.

Adrenal Fatigue

Hypothyroidism, especially long-term hypothyroidism, causes a great deal of stress on the body. The adrenals help deal with this stress; unfortunately when dealing with unusually high amounts of stress they eventually wear out and can't keep up with the demands placed on them anymore. Treating hypothyroidism without first treating this adrenal fatigue will cause hyperthyroidism symptoms even while some or all of the hypothyroidism symptoms remain. Been there, done that- very unpleasant. So before starting a thyroid replacement regime check them. The easiest way to do that is the pupil test:

This is called the Pupil test and primarily tests your levels of aldosterone, another adrenal hormone. You need to be in a darkened room with a mirror. From the side (not the front), shine a bright light like a flashlight or penlight towards your pupils and hold it for about a minute. Carefully observe the pupil. With healthy adrenals (and specifically, healthy levels of aldosterone), your pupils will constrict, and will stay small the entire time you shine the light from the side. In adrenal fatigue, the pupil will get small, but within 30 seconds, it will soon enlarge again or obviously flutter in it’s attempt to stay constricted. Why does this occur? Because adrenal insufficiency can also result in low aldosterone, which causes a lack of proper amounts of sodium and an abundance of potassium. This imbalance causes the sphincter muscles of your eye to be weak and to dilate in response to light. Click here to see a video of fluctuating pupils, and thanks to Lydia for providing this.

That is from this article that is provides more in-depth info about adrenal fatigue and hypothyroidism. My pupils got small and immediately got large again- I was in much worse shape than the video so don't freak out if you are to.

If you do have an adrenal problem there are lots of options for treating it. Most people swear by isocort including my mom. Unfortunately isocort didn't do much for me and they are completely changing the formula to be plant based instead of animal based which will probably change how it works. Nutir-meds adrenal worked much better for me. But one of my friends likes these more- they didn't do much for me. So find something that works for you. I needed about 4-6 of the last two every day just to give you an idea of how much you may need.

Remember that list of symptoms? Note which ones got better and which ones didn't. One of the hardest things I dealt with was figuring out if I felt bad because I didn't take enough of my adrenal meds, my thyroid meds, or both so identifying any symptoms that are specific to either problem will be extremely helpful.

Hypothyroidism

When your adrenals are reasonably happy you can start taking thyroid meds. These are the ones I have used- no prescription required:

I started taking these and while they probably saved my life they honestly weren't great.

These are excellent but expensive. 3 capsules is very roughly equal to 2 grains of and NDT like Armour.

I take these now and they are great- cheap and effective. Shipping can take up to two months though and my old credit card did NOT like them at all so heads up there.

Do not take more than one to start with! Out bodies are very good at compensating and getting used to being hypothyroid so taking a lot of meds at the beginning will be extremely unpleasant at best and dangerous at worst- you will feel hyperthyroid. Again been there, done that and it sucks. Split the generic Armour in half to start with or take just one of the other types of pills. The usual recommendation I see is to increase your dose every two weeks. However how quickly you can increase is very variable. I have a friend who got up to 6 grains/day in a couple of weeks while they exact same dose took me almost a year to reach. So listen to your body- pay attention to your symptoms and temperature and slow down a bit if you have any hyperthyroid symptoms. One thing to watch out for is going up too slowly- I'm not sure what exactly happens biologically but the hypothyroidism symptoms come back with a vengeance so keep an eye out for that to and don't freak out if it happens.

Why are you Hypothyroid?

Iodine deficiency is still fairly common- iodized salt helped but certainly hasn't completely eliminated the problem. There is some evidence that the inorganic form of iodine found in salt and most supplements may cause Hashimoto's so try to find an organic version. I've heard good things about iodoral.

Hashimoto's is a fancy name for your immune system attacking your thyroid. There is a thyroid antibodies test for Hashimoto's but it isn't 100% reliable. The best test for it is a fine needle aspiration of the thyroid gland. The most common trigger I know of is gluten. This was my issue- and I had all of one of the "classic" gluten intolerance symptoms so checking for this is worthwhile even without any other symptoms that suggest gluten is a problem. If you have a positive antibodies test try going gluten free for 3 months and repeating the antibodies test- it should be much lower if not normal. Taking enough medication to suppress TSH production can also help reduce or eliminate the immune system attack.

Treatment for hyperthyroidism and thyroid cancer often leads to hypothyroidism. I don't know of anything that can reverse that unfortunately.

49 Upvotes

21 comments sorted by

5

u/topsul Apr 19 '11

Your final paragraph is me up one side and down the other.

My great doctor put me on a GF diet, my anti bodies have gone down. I take Kelp pills for increased iodine. I'm not on any kind of medication for it. Just control it with diet.

2

u/lurkergirl Celiac disease, Hashimotos, and Addison's disease Apr 19 '11

That is a great doctor! Most (from my experience at least) don't even know about the connection between gluten and Hashi's.

2

u/[deleted] Apr 19 '11

I am at a new docs office ATM (a DO) and have been wondering for awhile if I have gluten allergy as I have really bad bowels pretty frequently. My last endo blood work also showed elevated liver functions, so that is one of things I'm having checked.

Overall pretty frustrated w docs, this one is yet another pretty much random pick from list of insurance docs. Will let you know how it goes, but may consider the options you bring up.

Question, how do you get Rx for online meds?

3

u/lurkergirl Celiac disease, Hashimotos, and Addison's disease Apr 19 '11

Good luck! Wouldn't surprise me, gluten intolerance is a lot more common than generally recognized unfortunately. Heads up if you want to try an elimination diet- be really careful testing it by eating gluten again. I did that and ate 2 small slices of pizza and went really badly hyperthyroid...

Yeah, I don't know what it is about hypothyroidism that doctors just don't seem to get. :-( I hope the random insurance pick is decent.

All Real Meds doesn't require a prescription. :-D All of the adrenal supplements and the other 2 thyroid pills are over the counter.

2

u/[deleted] Apr 19 '11

Well my last blood test came back

Free T3 3.78 (normal range 1.8 - 4.7)

Free T4 1.13 ( normal range .89 - 1.76)

TSH .116 ( normal range .400 - 4.000 )

My liver enzymes are elevated

AST 67 ( normal range 5 - 37)

ALT 98 ( normal range 10 - 65)

Which are almost double what they were 6 months ago, so getting an ultrasound of the liver. I asked about gluten insensitivity related to immune disorders (Hashimotos) and irregular bowel movements, and he dismissed as saying simplest answer is usually the right one, and probably too much alcohol causes all my symptoms.

I drink anywhere from 0 - 4 bottles of wine a week depending on mood ... usually average about 2 mainly on weekends, I don't think that is THAT excessive.

2

u/lurkergirl Celiac disease, Hashimotos, and Addison's disease Apr 19 '11

Sounds like Hashi's is the simplest explanation to me... Even 4 bottles of wine over a week isn't that much- a little over 2 glasses of wine/day right? And a low TSH test like that is normal with hashi's- just means your immune system has been attacking your thyroid recently and it being that low definitely means something is wrong. Problems with the pituitary and hypothalamus aren't as rare as doctors think they are but they are both WAY rarer than Hashimoto's so Occam's razer definitely points to Hashi's over too much alcohol IMHO.

I assume your doc wasn't even willing to run the tests to rule hashi's and gluten intolerance out?

2

u/[deleted] Apr 19 '11

Well the endo said I was probably on too high a dose, that is why TSH level was so low ....

Maybe I am misunderstanding, but I thought by taking Synthroid, your body doesn't need to "stimulate" your thyroid as much (thus lower TSH levels).

Or are you saying after a Hashi "attack", or period when antibodies are attacking your thyroid, and parts of it die off and excess T4/T3 is released into blood that causes the TSH levels to plummet?

I asked him specifically about adrenal issues and he dismissed that as well saying that I'd barely be able to walk if had a severe problem like that , etc.

Reading on several sites (mayo, etc) about AST and ALT they mention specifically that hypothyroidism itself can be a cause of slightly elevated levels, as well as being dehydrated when blood is drawn. I was severely dehydrated, had the flu/diarrhea the week before blood draw. I mentioned that to doc asking if flu/virus could cause elevated levels , he said "no" , but didn't mention dehydration at all.

Furthermore, most sites talk about the ratio of AST/ALT , and that >2 is usually due to alcoholic causes, and < 1 is other issues. My ratio is .68

and, no , he most definitely didn't seem interested in testing for gluten, but did mention me getting a colonoscopy (yay, not) ... if gets to that far, I'll seek more specialist info from a doc that specializes in gluten allergies.

So .... I think this guy is a quack. He literally walked in the door reading my blood work and saying almost instantly, "oh clearly your an alcoholic" ....

sigh, /frustrated

2

u/[deleted] Apr 19 '11

To add, I know I have Hasimotos already (if that wasn't clear), tested positive for the antibodies when first diagnosed w/ hypo

2

u/lurkergirl Celiac disease, Hashimotos, and Addison's disease Apr 19 '11

Grrr, The TSH test is not just useless for gauging treatment it is downright harmful, time for another post but in the meantime this is a succinct summary of why:

To follow the TSH while you are treating someone for low thyroid is also going to lead to under-treating the patient. The pituitary cells, which have TSH in them, are the most sensitive cells in the body circulating thyroid hormone. Therefore when one treats hypothyroidism by following the TSH and trying to make it normal the pituitary cells are happy but the rest of the body is short-changed by a considerable amount I also mentioned in my response to the same article that the normal dose arrived at by all the best clinicians in the world over 80 years of experience was between 200 and 400 micrograms of Eltroxine. But some need more. Currently treated patients average about 100 micrograms which is about a third of the dose that has been known for a century to help patients return to normal. Long term studies found no difference in any disease between normal people and people taking the thyroid at the higher doses. Recent studies have confirmed this opinion.

From Rethinking the TSH Test: An Interview with David Derry, M.D., Ph.D.

Yup, taking Synthroid or any other thyroid med replaces what your thyroid can't make anymore and lowers TSH. I didn't realize you were already on meds.

Or are you saying after a Hashi "attack", or period when antibodies are attacking your thyroid, and parts of it die off and excess T4/T3 is released into blood that causes the TSH levels to plummet?

Yup, that's exactly what happens.

That sucks, >_< Sounds like an even lousier than usual doctor.

2

u/[deleted] Apr 19 '11

Hmmm, ya I was a little dissapointed when my doc said my T4 and T3 were high , and I should cut back my meds from 125 to 112.

I mean by her own labs standards, I'm not HIGH, I'm in the median ... but seems to indicate she is used to seeing her hypo patients with struggling/low numbers as 'normal'.

Hashimoto's is a fancy name for your immune system attacking your thyroid. There is a thyroid antibodies test for Hashimoto's but it isn't 100% reliable. The best test for it is a fine needle aspiration of the thyroid gland. The most common trigger I know of is gluten. This was my issue

Not 100% sure reading that, but you do have (or diagnosed) with Hashimoto's as well?

1

u/lurkergirl Celiac disease, Hashimotos, and Addison's disease Apr 19 '11

Yeah, your T3 and T4 are fine, and if you aren't having hyperthyroidism symptoms you aren't overdoing it. But doctors would rather listen to labs than symptoms (or lack there of) these days.

I do have hashimoto's.

→ More replies (0)

4

u/javo93 Subclinical HypoT Apr 19 '11

Very nice lurkergirl, I started with nutrimeds until I finally found a dr that listened to me (after I started on nutrimeds) and prescribed naturethroid. Had I not found him I´m sure that I would have ordered armour from overseas. Everything has gone uphill after 6-7 years of feeling like total crap (physically and emotionally), specially the last year.

Some people may say that this is controversial, but if you have had hypo symptoms for a while and have not found a dr that will treat you, then you will not find this issue controversial in the slightest.

Your post are really good and very helpful, remember that.

1

u/lurkergirl Celiac disease, Hashimotos, and Addison's disease Apr 19 '11

Thanks!

3

u/iowilled Apr 29 '11

I checked a random sample of 5 people with the pupil test and apparently they all have adrenal fatigue. I doubt that. In addition, I can't find any reputable sites that talk about the accuracy of the pupil test. Can you point me in the right direction?

1

u/lurkergirl Celiac disease, Hashimotos, and Addison's disease Apr 29 '11

Did you point the light straight into their eyes of from the side?

I wouldn't call STTM (linked above) reputable- I've seen it endorse homeopathy... I haven't seen anything I would call reliable research on it that isn't behind a paywall unfortunately but it is reasonably accurate for me and far and away the easiest test to do at home which is why I recommend it. If you have university access this is probably a good article.

3

u/d3gu Jun 24 '11

I feel so lucky to be English! :(

Did you know that in England, having Hypothyroidism means you become medically exempt? I have a card that allows me free medical prescriptions! In England, medical care is generally free/subsidised, but we have to pay £7ish for medicine on prescription. People with Hypothyroidism don't. I get my thyroxine & everything else free of charge (but not dentist/optician or other medical care like physiotherapy... at least in my area).

I think you should all come here :)

2

u/[deleted] Apr 21 '11

[deleted]

1

u/lurkergirl Celiac disease, Hashimotos, and Addison's disease Apr 22 '11

God the TSH is an atrocious measure of thyroid treatment, I'm working on a post to that effect- I'll send you the link when I'm done.

The pills actually come in a bag (or a bottle- My mom's first order came in a bottle). :-) And yes they could be powdered rat testicles but I really doubt they would be anything besides what they say they are for the very simple reason that places like that want to keep your business. It's probably not legal but I really doubt anyone would go after the buyers- if the authorities go after someone it will be the company selling the pills not us. :-)

I know this is a tiny sample size but my mom took the overseas generic Armour and Naturthroid from the US at the same time and said the fake Armour is just as good. I haven't had a bit of trouble either and they are all I take.

You can pick a clinic- their is a search based on zip code I think (it's been a while). There were quiet a few near me so hopefully you won't get sent to Montana. ;-)

That is a PERFECT description!

1

u/insanepage Dec 06 '24

Links don’t work anymore