Thyroid and Blood Pressure Questions

[Victoria]

http://www.sanctuarywellness.com.au/diagnostic_tests/thyroid_test.html

This is the site I used to copy the list of thyroid tests to take to my GP about 4-5 weeks ago (in order to follow up my 4 months of hoarse voice).

I had been to him a few weeks previously about the hoarse throat, thinking it might originally have been mould or damp in my bedroom (still) - those members who've read many of my posts will remember I bought a new bed 5 months ago. I also bought a new wool underlay, new curtains & more recently a new goose down doona, large panel heaters & so on - that was the last of my long service leave & termination payout when I quit my job.

He was keen to send me straight to a throat specialist (which makes sense), but I was keen to investigate this thyroid disfunction theory of mine (which we followed up in 2006 with negative results). And every time he tested my TSH, along with other blood tests on a regular basis, of course it was normal.

He missed ordering the iodine test (on this list I took to him off the internet), which this other Dr is now following up.

I also was interested in http://thyroid.about.com/cs/hypothyroidism/a/normaltsh.htm

Ensure you read the bit under the question - Have you been tested for thyroid antibodies?

My recent reading about thyroid suggests that you can have all the symptoms for months/years before it actually shows up on your TSH tests. T3 & T4 can also be normal. You can go from being hyperthyroid to hypothyroid (& back again).

I think it's important to keep prodding the Dr's if you have the low basal temperature & all the symptoms.

I know from the past 15 years that if you genuinely have symptoms that affect your daily routine & ability to function normally (whateveer normal is for you - we're all different), then keep searching for answers.

(the only trouble is that some of these tests aren't covered under Medicare, so I've got to pay for them out of pocket. I've just paid the $50 for one of the thyroid tests from a few weeks ago and I know there is $68 to pay in future for one of the tests the Dr/Naturapathic ordered last week. Fortunately, she bulkbilled her 1 hour appointment direct to Medicare. Hope this bulk billing direct to Medicare continues, as now that I'm not working & on a pension, I really don't have a lot of money).

Appointment to get the results is not for another week yet.

 

[Victoria]

Have you been able yet to track differences in this realm since changing to a Paleo (or modified Paleo) diet? Are you able to get only organic meats? I find this difficult, not to mention expensive. I have not even been able to find grass-fed beef and our co-op is supposed to be one of the best in the entire upper West coast. I tested negative for Celiac as well, but my diagnos-techs testing showed an elevated response to gluten, so I am sticking to rice and some corn these days with occasional dips into something with flour in it. Hopefully that will stop entirely, but I sometimes have to choose imperfect over eating nothing at all.

Zoe,

I am not on the Paleo diet 100% at the moment - am eating a rice based cereal & a little rye sourdough bread etc

When I was on the Paleo diet 100% from June to Sept 2005, I was 100% well & felt the best that I've ever felt in 25 years. (of course, it might have been a remission in pain/fatigue and pure coincidence).

Each time I go back to it, I gradually improve & then dramatically improve. I only seem to last about 3 months each time, then I have some chocolate biscuits or some rye sourdough bread or something that breaks the diet & I go downhill.

(I do take calcium & some supplements though).

With our modern lifestyle & lack of outdoor life & sunshine all day, you will definitely need a complete calcium/vit D on the paleo diet. On an individual basis, you might need some other supplements to boost your version of the Paleo diet).

I am still eating organic meat, eggs, fruit & veg, nuts & seeds. But if I didn't have some other money to supplement my disability pension, I would never in a million years be able to afford the organic food. I have cut down on the variety of vegetables, fruit & nuts I buy to try & reduce my food bill though. I also buy fresh salmon, but it's not organic.

I need to cut down alot more - I can't afford to continue this level of food costs indefinitely. But I really can't bear to give up the organic food. I KNOW I feel better on it. I know it tastes better, especially green vegetables.

Zoe, I would be giving corn a miss if I was you. Corn (which I love) gives me excruciating bowel pain.

I guess you've got to read up on diet & nutrition & supplements & try to get the best you can (for your individual needs).

 

[zoe.a.m.]

Too tired to breathe--almost! Biopsy was negative for malignant cells and just wanted to thank anyone who was crossing their fingers for me!

Apparently there was serous fluid and blood which is supposed to suggest a cystic nodule or cyst and my acupuncturist pointed out "you often get those when you push a needle into someone's neck" so now the mystery of the symptoms begins! I was lucky that my PCP is out of town this week and I'd called her receptionist yesterday to ask her to give me a heads up when the results came in so I could call the hospital for them (since they would take their time sending them by mail) and she called me today to say that an operative report had been faxed over, and then a few hours later to say that the biopsy results were in and she could tell me they were negative. It would have taken much longer had my doc been in the office!

Thanks for the Paleo info Victoria (and the advice to find a doc who's interested in subjective symptoms! When I'm back in action (oh sleep, where hast thou gone??), I can reply with what I've been doing and with new questions.

Sox, when do you think you can get a biopsy?

 

[soxfan]

zoe- First I have to see my pcp on Monday and ask him about it. I don't think he will do anything because he is the one that sent me to the endo in the first place. I am done with my current one I will call Dr. F. There are two endo's in town and one in the next town. I will just have to pick one and see how it goes. I just need a referal from my doctor which I will get and then go over to either office and make an appointment. Have to go and get all my records to give to the new doc. So I am guessing it wiil be a while.
Had all my blood work done this week for thyroid (tsh-t uptake-Free T3) an 8am cortisol, cbc and lipid panel. I will get all those results next week.

I am so happy your biopsy was negative! Great news...we all need that every so often huh? I will send you a note next week and let you know how my tests turned out and what is next regarding the endocrinologist...take care

 

[sensing progress]

Happened to see something related to thyroid while reading today, don't know if this applies to anyone here but just thought I would share. Does anyone eat a lot of soy?

"Soy contains goitrogens - substances that depress thyroid function. Goitrogens are substances that block the synthesis of thyroid hormones and interfere with iodine metabolism, thereby interfering with your thyroid function."

 

[Victoria]

I read quite a few negative reports on soy last year (which is why I discontinued soy & now use rice milk & no longer eat tofu).

I thought I'd try rice instead of soy & it seems I DO feel better from the change. It's hard to form a really positive view about the change as my symptoms & pain go up & down on a regular basis. But overall I decided rice might be "safer" than soy.

Of course, with all the GM foods in the US, I would suggest any grain be suspect. In Australian, GM crops are only in their infancy.

 

[zoe.a.m.]

I quit soy about a year and a half ago or so. I did have a minor return to it about 2 months ago maybe, when the heat and everything got the best of me and I spent a couple of weeks with ample soy ice cream in the freezer and was having it almost daily.

Does anyone know anything regarding rice vs. almond milk? I switched to almond because the taste is actually my favorite of all the alterna-milks, and I figured I ate almonds anyway

I know the subject of goitrogens has come up elsewhere on PR and now I'm wishing I'd followed up more on reading about it. It is very tricky though to decide what is what when symptoms wax and wane. I think I can safely state that overall I guess I've felt better without soy, but it's quite interesting to consider if my more hypo-like state for the years prior could have been due in some part to my soy intake (treating perhaps a more hyper state that I didn't even know I had). The timeline is sort of dead on, but I don't entirely trust my memory... I wonder if soy is recommended for high thyroid or if it just keeps mucking the system up and should be avoided altogether!?

 

[Victoria]

Zoe,

from all my reading in recent time, soy should be avoided altogether. I tried almond milk about 25 years ago when I stopped dairy (after vega allergy testing).

Haven't tried it since.

I suspect my memory is as bad as yours. I can't really remember much of any diets I've tried (except that the Paleo diet had the most dramatic results). Many of us complain about memory & brain fog, but if everyone else did as much research & reading as most of us over the years of our chronic ill health, I guess they would have trouble remembering details too.

I'm just can't remember the main reasons why soy is so bad (apart from the GM stuff). I suspect a visit to Dr Mercola's website & doing a search on "soy" foods would reveal exactly what it is.

Sometimes I feel as though if I took notice of every little negative info I read on the internet (or health book on my shelf), I'd starve.

As I'm in my 50's, it's actually quite interesting to note the foods & diets that were highly recommended in the 1970's & 1980's when I first became interested in alternative therapies & diet, have now been radically updated. Theories & research on foods has changed & changed many an "expert" opinion.

I still like the idea of the Paleo diet (updated to included to take into account the sedentary lifestyle of modern man).

I feel there is a great deal of logic & sense in following a fresh food diet similar to that followed by our Paleolithic ancestors. We just need to get more sunlight & activity in our modern lifestyle. Extemely hard if you're housebound (or even spend all daylight hours stuck in an air-conditioned office).

There is a lot of sense in the diets of many indigenous tribes of the world too. They don't seem to have the modern diseases & dental decay of the modern western person.

It does seem as though there is a prevalence of goitre (or iodine defiency) in some of the more remote cultures though.

Can't wait to see my iodine test results. I haven't used iodised salt for about 25 years, although I do eat a fair bit of seafood.

DON'T YOU JUST HATE WAITING FOR TEST RESULTS.

I'm such a pro-active sort of person, if the results of recent tests are outside the normal range, I can tweak my diet & supplement regime (& get on with it).

(Hope the results don't lead to more drugs - not sure I could tolerate any more - physically or financially). If the results are minimal, tweaking the diet might be all I have to do).

 

[soxfan]

zoe- just wanted to let you know my TSH has risen from 1.87 to 3.50 in 5 weeks while on the same dose of levoxyl. The doctor called me this morning and wants me to raise the dose. She said she has no clue why my levels are flucuating so much. Plus my cortisol was 12 and she said she wished it was higher so she doesn't want me to continue the cortef taper...

 

[zoe.a.m.]

zoe- just wanted to let you know my TSH has risen from 1.87 to 3.50 in 5 weeks while on the same dose of levoxyl. The doctor called me this morning and wants me to raise the dose. She said she has no clue why my levels are flucuating so much. Plus my cortisol was 12 and she said she wished it was higher so she doesn't want me to continue the cortef taper...

Yikes! Well, I'm glad your labs are reflecting the changes you've been feeling and so it's not just a matter of "saying how you feel" and that type of thing. I found out a couple of things recently--or, I should say that I came across them (but can't guarentee if they're true, etc.--about how T4-only meds can make a huge mess of things and some very interesting info about thyroid and CFS in a book called Chronic Fatigue, Fibromyalgia & Environmental Illness. Again, I've only glanced over the thyroid parts and they do contain info I haven't seen (other than at PR) before and that gave me a better sense of the complexity and testing process. The book as a whole I can't comment on.

How is your cortisol tested (saliva or blood)?

Oh, the second piece of info was about taking thyroid glandular supplements if possible since once a person is on the meds for 2 years, the thyroid basically stops making significant amounts of hormone for the rest of one's life. I know the person who told me this is very knowledgeable and a health professional, but everyone has different opinions and your case is clearly beyond subclinical at 3.50!! Wow, I really hope your doctor thinks about it some (or researches) and tries to find some answers for why the level would rise that quickly (or sends you to someone who does have an opinion)!

 

[soxfan]

Yes..I am wondering the same thing as to why the levels are going up and down like that. I am wondering if it has something to do with the nodules since I am not changing doses during these rise and falls. I am going to mention it to my pcp tomorrow and see what he thinks. My endo says we will re test in 6 weeks because that is how long it takes. It does make me feel somewhat better to know that I am really not crazy and I know my body when something just isn't right.

She uses blood to test the cortsol and doesn't believe in the saliva testing. She says blood is just as reliable. I do take T3 medications too along with the levoxyl. My previous doctor had my TSH suppressed by giving me too much levoxyl and now this doctor can't seem to get the dose right either. Nothing is ever easy is it?? I was all ready to switch doctors but now I don't know what to do since she is changing my dose and that is what I wanted.

 

[Lisa]

Hello Zoe and everyone on this thread! :Retro smile:

Vicki said she couldn't remember why soy is bad - it is a phytoestrogen. Basically, in the body it mimics estrogen and can cause all sorts of problems because of this. We should get Jody in here on this, she knows heaps about soy and its evils!

Zoe - I've always heard that once on thyroid meds you're always on the meds, but its not what I've experienced. When I was 14 I was diagnosed with hypo and began taking synthroid min dose. Then at 17 I had my wisdom teeth removed, felt so lousy as to completely forget to take the meds for a solid week. Didn't feel any worse for it and completely stopped taking them.

The meds were very much needed when I was 14, but along the way something must have healed. I'm not so sure 'they' know what they are talking about on this matter, at least as far as low dose thyroid stuff is concerned. High dose - yeah, I wouldn't be surprised it it was for life. But on the other hand, if it helps more than it hurts that is what counts right?

Hugs! Lisa :Retro smile:

 

[Mya Symons]

Hello Zoe and everyone on this thread! :Retro smile:
Zoe - I've always heard that once on thyroid meds you're always on the meds, but its not what I've experienced. When I was 14 I was diagnosed with hypo and began taking synthroid min dose. Then at 17 I had my wisdom teeth removed, felt so lousy as to completely forget to take the meds for a solid week. Didn't feel any worse for it and completely stopped taking them.

My endocrinologist told me that when you have a hypothyroid due to Hashimoto's disease you should never stop taking your thyroid medication. She claimed that if a person with Hashimoto's disease takes enough synthroid or levothyroxine, it will actually stop the immune system from continueing to attack and damage your thyroid. If you stop, she told me, more of your thyroid will be destroyed. I am not sure I believe this; however, since the last time I had a Thyroid Peroxidase Antibody test the anti-thyroid antibodies were still extremely high. Also, every three years or so my levothyroxine dose gets increased because more of my thyroid has died.

Every once in a while I go onto Mary Shomon's thyroid site at about.com. Apparently, Oprah has Hashimoto's disease and she decided not to take thyroid medicine becuase it made her feel worse. My pain issues started when I started taking thyroid hormone. I often wonder if the synthetic thyroid hormone is missing something that some people cannot do without.

One more thing I forgot to add. I was told by a previous doctor who worked with Fibromyalgia and CFS patients that if you have a hypothyroid and you also have these illnesses, 99% of the time the hypothyroid it is caused by Hashimoto's disease. Normally, your regular doctor will not tell you whether or not you have Hashimoto's disease because they don't care. They treat all hypoactive thyroid cases the same: with synthroid or a generic form of synthroid like levothyroxine. Therefore, they have no reason to run the extra tests to see if you have Hashimoto's disease.

Hashimoto's disease does cause nodules. The nodules can happen when the immune system attacks the thyroid, kills the thyroid cells and replaces them with the immune T-cells. I had one doctor tell me that it was not possible to have nodules and have Hashimoto's disease. When I saw the endocrinologist, she said he was wrong. I think thyroid disease is like cfs in the sense that too many doctors don't know enough about it. Did you know it is the third leading disease in the U.S. and there is only one drug that mainstream medical doctors are willing to prescribe for hypoactive thyroids: Synthroid or a generic form of synthroid like levothyroxine? Every medicine they are willing to prescribe has the same ingrediants as synthroid. There are more choices for meds for men with erectile disfunction. It is pretty sad. You are not allowed to have any side effects on synthroid or generic thyroid meds (which are the same as synthroid) because there is no other medicine and if you do have side effects your doctor will tell you it is all in your head. Sound familiar? Hypoactive thyroid is also mostly a women's disease (3/4 or more of the people who get this disease are women).

I have wanted for a very long time to try natural medicines for my thyroid, but I have not been able to afford it. I have read that many women feel much better on the natural medicines.

P.S. There are FDA approved medicines that also contain T-3, but a person would be very hard pressed to find a doctor willing to prescribe T-3 meds. They are very hard to monitor and doctors are scared that on these medicines their patients will have heart attacks and they will be sued later. When I lived in Seattle, I did a search and found that there were 3 doctors willing to prescribe T-3 and non of them took insurance. Seattle is a pretty large city. I think the population is over 3 million.

 

[zoe.a.m.]

Back to the thread here... I am lost with the discussions of the medication since I've yet to be put on one except Armour several years ago by an ND for about a year (memory on this is not exact at all). It still seems that the symptoms are the bulk of the useful info and that the tests work for some people some of the time. It sounds like T-3 meds are somewhat dangerous...? Can you say which docs were willing to prescribe those Mya (I'm curious since I'm in WA)?

It sounds like Hashimotos is under diagnosed. I was surprised to find my tests for that were okay; the doctor I saw who thought it might be a part of the picture (took close to a decade and was the first I'd heard of it) was fairly sure they would be positive. I think, a few pages back in this thread, is a description of how quickly those tests can go from normal to Hashimoto-positive though. I am having a phone appt. this afternoon with this doctor and am hoping to get orders for more thyroid tests and just to get an overall opinion of what the heck is going on!

I fell yesterday and thought that I broke my foot! It is only a deep-muscle bruise though, but I'm supposed to lie down and I can't walk without crutches (wow, crutches are really, really, really hard). I've been having these strange occurrences and thinking it's stress (everyone's favorite go-to explanation!) or having too much on my mind, but yesterday it occurred to me that I've had a change of neurological symptoms. I see something, think I am processing the info, but then do not react accordingly. It's really weird. Sorry to get off of the subject, it's just come along with the thyroid stuff and I'm wondering what on earth is going on!?

Oprah--she aggravates me. I expect she is taking something for her thyroid, just not the T4/levothyroxine that the rest of us would have prescribed. I ordered, and now have (but haven't started taking) a thyroid supplement (animal based and recommended by my nutritionist as something that is helpful for both hypo and hyper symptoms and will, at worst, only give the body excellent nutrients and should not have any negative effects like a thyroid medication). I think it was about $45. The Armour I used to take was inexpensive ($70 for the ND appointment and probably $10-$20 for the meds, which lasted 3-5 months). I wonder if that pricing is unusual? I guess it's moot now with Armour being a thing of the past. Mya, are there other natural meds for the thyroid that I missed?

Sounds like no one really knows whether taking the meds will shut down the thyroid or whether the body will begin again; I'm guessing that might be very individual, like so many other things! Sox, I haven't had the cortisol testing done, but I think it's pretty universal that the saliva test is the better one, but I certainly know the type of doctor who just pays no attention whatsoever to what isn't the norm. It's the norm I guess, being dependent upon if-y tests to diagnose and treat--gone are the days of the subjective/objective!

I'm hoping for something helpful with this appointment today!

Oh, the book I mentioned earlier does seem to have a good list of thyroid tests and explanation of the complexity of disorders and dysfunction. It also goes onto say something as stupid as "you don't feel fatigue when you do 'such-and-such' (an enjoyable activity)" and I just thought, "oh geez, when will this type of ever stop...?" And I also thought of all of the truly enjoyable activities I've been a part of that gave me meaning and happiness, but that I either couldn't make it through, was too fatigued to even really experience, and that made me pay dearly for up to weeks of a fever. I'm willing to take what's good of the book and put it in my arsenal though and just tune out the idiocy.

 

[soxfan]

zoe- I take T3 along with my levoxyl. I have for about 4 years now. I saw my doctor the other day and he is NOT happy with the endocrinologist. He feels she has gone to slow in bumping up my T4 because my levels are crazy plus I complained again about the weight, constipation and also my rising cholesterol. In fact my LDL has gone up again in the past month. He is positive my thyroid has caused all this since it all started when my doses were changed.
He was going to call her and find out what is going on. Plus he thinks the nodules should be biopsied. I haven't heard back from him yet..my endo only works part time so who knows if he has been able to get in touch.
I am so sorry you fell and have to use crutches..it never seems to end does it? I will keep you posted on what is going on when I hear back from someone!