Thyroid Getting Worse

[super-sally888]

Hi,

Just got my latest thryoid results back: TSH 0.573 (0.27-4.2), FT3 2.03 (2.8 - 7.1), FT4 10.58 (12 - 22). Calcium also marginal: 2.15 (2.15 - 2.55).

This is worse than before I started this gluten free (well - mostly free - am still in learning phase) nearly three months now... previous tests last August were just below mid-range for FT3 & 4. Feeling reasonable, though having trouble getting up in mornings now, and feeling fatigued from time to time (that wading through treacle feeling), and a bit more emotional than before (feel like crying more)....

Am already on 3 grains natural thyroid. My endo dr. doesn't want to increase dose (he actually would prefer me to be on just T4 replacement, I am resisting because I feel better on the natural stuff and on just T4 my FT3 is always below range), and cause TSH is low normal. He says maybe has something to do with absorption (he doesn't know much about celiac) and would like to watch and see for a while, rather than adding T4 (I don't have access to more natural thryoid at the moment).

Could diet have anything to do with this? Seeing I'm not eating wheat, am eating a lot more nuts and fruits (no soy)?

I don't know what to do now. Anyone had similar experience?

Sally

[Ursa Major]

Sally, I don't want you to feel ignored. I am having similar troubles, but I am still working things out with my doctors. I sent a PM to Georgie, who will have much better advice than me, and will actually know what she is talking about. I expect she'll answer soon, since she is in Australia and 13 hours ahead of my time. Meaning that it is already afternoon where she is (while I should have been in bed long ago).

[super-sally888]

Hi Ursa,

Thanks for your email. Is two pm here (just a few hours behind Australia). Am hard at work at my desk. (or should be..)

Go have a good sleep! Maybe Georgie will have some good advice for both of us by the time you wake up.

Am waiting for DHL to come pick up my "special" package for enterolab. Hoping there is no problem with sending biologic specimen... hmmm... I LOVE their terminology...

Take Care

Sally

Sally, I don't want you to feel ignored. I am having similar troubles, but I am still working things out with my doctors. I sent a PM to Georgie, who will have much better advice than me, and will actually know what she is talking about. I expect she'll answer soon, since she is in Australia and 13 hours ahead of my time. Meaning that it is already afternoon where she is (while I should have been in bed long ago).

[georgie]

Sally, Those labs indicate you are still very Hypo. There can be 2 reasons for this at your stage of meds. One is that you are not taking enough Armour to rid the Hypo. Some people don't feel good until they are nearly at their optimum dose and that can be anything from 2 grains to 11 grains ! ( that person has had her thyroid removed )

Another reason and that seems likely given your feelings of helplessness and crying - adrenal fatigue. Have you been tested for that ? Its best done with saliva testing where you do 4 samples during the day. You can test high at breakfast time for eg but have a bad crash at midday orevening - which the 1 x day test won't show. And a blood draw is often not accuarte - as people get stressed driving to the lab , seeing the needle etc - and that raises the cortisol a bit just for that one time frame on that day.

If you are low in adrenal function your Armour will 'pool' in your blood and not get into your cells correctly. The labs will show high levels but its not getting in 'to work' as it should. Adrenal fatigue is very common with HypoThyroid - as we all suffer too long before getting meds. The best med for Adrenal Fatigie is HydroCortisone and you need to find a Dr that reads and understands Dr Jeffries 'Safe Uses of Cortisol'. Once again the dose varies but you take a SUPPLEMENT of HC until your adrenals rest and recover , let the Armour work,and then wean off. Healthy adrenals produce approx 40 - 50mg of HC equiv a day. So if you are deficient - you need to boost that to normal.

Endos are usually not the best for Armour so you have done well to get this far with your Dr. You may have problems with getting Adrenal Fatigue dx,as many Drs are trained that there are just Addisons and Cushing, and everyone else is normal. Many don't recognise the Fatigue stage.

You can order your own saliva tests. www.canaryclub.com is one.

Are you taking your temps each morning and during the day ? www.drrind.com

I have Celiac and take my Armour under the tongue - just in case. Another area to check is B12 - that is often low with Thyroid problems too. Hope this helps a bit. It takes a while to heal HypoThyroid. I have heard a month for every year you have been sick. Hang in there ! www.stopthethyroidmadness.com can help a lot if you feel a bit lost.

[super-sally888]

Hi Georgie,

Thanks for your reply. Very useful. Maybe that would explain!

I am hypo due to unknown causes, diagnosed last 2000 after massive weight gain and every symptom in the book but normal TSH levels (my dr at that time was happy to treat just on the basis of symptoms), and it has been progressive (and TSH etc have all caught up). Still have my thyroid. But have had to regularly increase the meds over time...

My endo (Dr. Mike) actually is a very nice man and tries his best to work with me (and my alternative approach) - though he doesn't necessarily agree (like he would prefer me to be on cytomel and thyroxine than dessicated thryoid - which he refers to as that "animal stuff" - and is worried that it will affect my other allergies).

They don't have saliva testing here for cortisol. Maybe I can do a serum cortisol (have an order for Prolactin (have long-standing galactorrea), Albumin, Liver and Kidney function, Parathyroid hormone, adding one more test shouldn't be a problem - anyway, they don't care as long as I pay). That should be morning for cortisol, right?

I asked Dr. Mike before about adrenal fatigue and he just said I don't look like I have that. End of conversation. But he is open to new ideas.... so I could try him if I can give him some creditable resouces...

Do you know any medical links / references about "resistance to thyroid meds" caused by adrenal fatigue? I have sent him links before and he has read them...

Also we discussed about B12, but apparently that is also not commonly tested over here and would cost me about $230 - which I don't have free. So he and I agreed that I should just take a B supplement (this is B1, B6, B12) - which I have discovered helps to reduce the tingling in my hands (I get this particularly after biking - I enjoy triathlon in my spare time). If I don't take the B, then the tingling doesn't go away (I guess I can assume from this that I have a problem).

I haven't tried charting my temps. I will try that. They have the protocol on Stop the Thyroid Madness.

Worst case, I guess I can resort to self medication - but I would like to be sure before I try that... and would prefer if my dr will work with me.

In the meantime am trying to manage stress and get as much sleep as I can manage.

This is frustrating at times. Feels like my body is betraying me!

Thanks so much for your response Georgie. Really appreciated.

SALLY

[georgie]

It would be interesting to see what that TSH was in 2000. You may find it was anything but 'normal'. The range has been changed since then and lowered - did you know that?

Serum cortsiol may show a potential problem. But saliva is best. You can order that yourself. Can you get your Dr to read' Safe Uses of Cortisol'. Its a Drs text book.

I would be trying hard to get a B12 test. The tingles you are feeling could well be low B12. Do you know that you can get permanent nerve damage similar to MS if you don't treat a B12 deficiency? I have. My feet 'pins and needles' wasn't dx for 15 years as they never tested B12. I have Perncious Anaemia which is a serious disease that can kill you without treatment. I can barely walk at times now .... don't leave that test too long. Sublingual B12 tablets are not proven to reverse B12 deficiency. If you have nerve damage you need B12 shots and lots of them ( weekly stretching to monthly later )

Lets hope your Dr is open to new ideas. They are old ideas really. Dr Hertoghe was trialling all this late in the 1800s,it was common practice in the first half of the 1900s, and his great grandson is now reviving it in Europe and the world. There is a conference in Las Vegas coming up. Perhaps your Dr would like to attend ? Drs should always be prepared to listen and sounds like yours is - so good luck!

[georgie]

I have thought of another book your Dr may like to read and research. Hertoghe , The Hormone Handbook. Its a book written for Drs . My Dr has a copy and raves over it. Its pricey - about $400 - but it covers what I have been saying in laymans terms - for a Dr.

[nutralady2001]

Hello Sally

Armour is best dosed by symtpoms . As Georgie has said and you have noted both your Free's are very low. FT3 is best at the top of the range abd FT4 around the 3/4 mark. My FT3 is very slightly over the top of the range but I have no hyper symptoms. I am on 6 and 1/2 grains ( 390mgs)

[super-sally888]

Hi,

My FT3 has only ever been low normal - before armor it was below normal. For now my doc is justing adding in levothyroxine (can't get armor here in Philippines) - just increased by 25 mcg - to see if it brings things up. Maybe will need to increase the dose.

Am definitely having hypo symptoms now... brain fog, not thinking straight, getting even more obsessive compulsive than normal... and getting depressed (I can tell 'cause I start getting moody, super hard on myself even self abusive, and start think about suicide (Don't worry - just thinking - I am NOT going to do anything).... I just have to remember really hard that this is the thyroid and not me! And be patient to work it out!

This also causes problems for work and personal relationships... I don't need this just now!

Oh - am going to test liver & kidney stuff to make sure all is normal.

S

Hello Sally

Armour is best dosed by symtpoms . As Georgie has said and you have noted both your Free's are very low. FT3 is best at the top of the range abd FT4 around the 3/4 mark. My FT3 is very slightly over the top of the range but I have no hyper symptoms. I am on 6 and 1/2 grains ( 390mgs)

[nutralady2001]

delete sorry will post again when I'm not so brain fogged lol

[darlindeb25]

brain fog, not thinking straight, getting even more obsessive compulsive than normal... and getting depressed This so resembles how I feel. The brain fog is probably the worst. Last Friday, I locked my keys in my car. I do things in an order, all the time, yes, slightly obsessive complusive, I guess. I do not feel it is so much complusive, it's just I have to do it this way, or I forget steps. I never used to lock my car, yet here they all kept nagging that I must lock it, so I have finally learned to do it, yet I always feel this little panic as I lock it. The minute I let go of the door, I tried to stop it, all was in motion and I didn't get it and there were the keys, in the ignition. My other car key, of course was at home, and my house key was in the ignition, locked in the car. An hour and 1/2 later, I finally got Kev on the phone and he came and rescued me. Tuesday morning, I walked out of my house and locked my keys inside--thank God my landlord was still home and let me in to get my keys. Twice in 4 days and it makes you feel so stupid. At work, I will be writing out a receipt for a patient and I can't remember what month it is, or maybe the day--it's all very aggravating. I do the accounting at work, I can't afford these mistakes.

I know I posed my thyroid results before on here, yet I can't remember where. Some of you told me that I look hypothyroid. The more I read and the more symptoms I see, just makes it all seem to make sense to me. When Georgie brought B12 into the mix, that peaked my attention. I too have neuropathy from B12 deficiency and have been tested and diagnosed with neuropathy. The last B12 bloodwork was a non-fasting bloodwork, I wasn't told bloodwork would be done before hand--any ways, my B12 registered around 1200, yet, I take 2400mcg daily of B12, so I have to wonder how accurate that count is. What would happen if I stopped my B12? I had been taking 1200mcg for about 9 months and had just started taking the 2400mcg for maybe 2 months before that work-up.

My counts came back:

TSH 1.97

T4, Free 1.1

T4 Total 9.3

T3 Uptake 27.2

T4, Free, Calculated 2.53

T3, Total 140

This also was a non fasting bloodwork up. This was the day I was determined to be depressed with anxiety and was put on Celexa. The depression is better, the panic has lessened, but is not gone. The brain fog is maybe the worst for now and what I feel is short term memory loss, which of course, can be triggered by the fog.

How does this all sound to everyone?

[super-sally888]

Deb,

I don't know what the lab ranges are so I don't know if anything other than the TSH is low. However, I do know that TSH should be 1 or less. TSH should be at the bottom of the range for those of us with Hypo. So your depression, brain fog, etc etc... could all definitely be affected. Maybe you should try increasing your meds to get your TSH down further...

In my case, my TSH looks low, but everything else is also too low meaning I need more meds.... Georgie talked about adrenal probs. Think that this can be detected by measuring temps... please see her earlier post in this thread...

Trying to explain to my friends that my current situation is due to hormone problems - NOT I am trying to be vague, or difficult etc... and asking them to be patient with me... Geez....

My counts came back:

TSH 1.97

T4, Free 1.1

T4 Total 9.3

T3 Uptake 27.2

T4, Free, Calculated 2.53

T3, Total 140

[georgie]

Deb, We need to see ranges for the Free T4. TSH means little when trying to dx Thyroid, except that yours is a bit high. You haven't had FREE T3 done , or ANTIBODIES. You haven't had all the tests. The other tests you had are not important for dx problems.

Brain fog is a major symptoms of Hypo. Depression is too and why didn't your Dr trial Thyroid meds instead of depression meds ? Armour . Get some Armour. Find a Dr that cares.

Sally, One brand of Armour ( Thyroid S) is made in Thailand. Why do you not have it in the Phillipines ? Sounds like your Armour dose is not enough. Its best not to add other thyroid meds to it - until you get to your correct dose - and then some people tweak it abit and add extra T3 ( the active one). At the worst - if you can't get Armour - can you get synthetic T3 ?

[super-sally888]

Hi Georgie,

Don't have many options here. In Philippines the only thyroid med available is synthetic T4. There is no armor and there is no synthetic T3.

Sally

Deb, We need to see ranges for the Free T4. TSH means little when trying to dx Thyroid, except that yours is a bit high. You haven't had FREE T3 done , or ANTIBODIES. You haven't had all the tests. The other tests you had are not important for dx problems.

Brain fog is a major symptoms of Hypo. Depression is too and why didn't your Dr trial Thyroid meds instead of depression meds ? Armour . Get some Armour. Find a Dr that cares.

Sally, One brand of Armour ( Thyroid S) is made in Thailand. Why do you not have it in the Phillipines ? Sounds like your Armour dose is not enough. Its best not to add other thyroid meds to it - until you get to your correct dose - and then some people tweak it abit and add extra T3 ( the active one). At the worst - if you can't get Armour - can you get synthetic T3 ?

[georgie]

Don't have many options here. In Philippines the only thyroid med available is synthetic T4. There is no armor and there is no synthetic T3.

Gosh - I think I would emigrate Or go overseas for my Dr and meds. Got any holidays planned ?

[super-sally888]

Is a problem. I found a dr. in Australia who prescribed (though not very happily) armor. But I only get to go there once a year.... not due to get there for a few more months. Haven't managed to find armor in any other country yet - go to HK and Malaysia often. Maybe I will post on the international threads and see if anyone from HK or Malaysia can give me some advice.... on who to see and where to get more meds...

My Dr. tells me that they will get cytomel back here eventually... but don't know when...

So all the poor thyroid pateints in Philippines have absolutely no choice in our meds.

S

Gosh - I think I would emigrate Or go overseas for my Dr and meds. Got any holidays planned ?

[darlindeb25]

Deb, We need to see ranges for the Free T4. I'm not sure what you mean.

T4, Free 1.1 (0.8-1.8 ng/dL) You are right, I do not see T3, Free on my paperwork, just an uptake amount T3, Uptake 27.2 (22.0-35.0 Percent).

To be honest, I do not understand any of this, just reading what you tell me. The doctor of course, told me my thyroid is fine, but I still have this nasty brain fog and I did not have this so bad even 1 year ago. Vitamin D was mentioned to me also, by another poster in another forum. I do know that I do suffer in the winter and do much better in the summer months when I get natural sun. The vitamins I do see on this list seem to be in the normal range. The testing was done by Quest Labs. The TSH level at 1.97 is well within the reference range of 0.40-5.50, yet I unsderstand this reference range is not accurate. Are headaches a symptom too?

[georgie]

T4, Free 1.1 (0.8-1.8 ng/dL) You are right, I do not see T3, Free on my paperwork, just an uptake amount T3, Uptake 27.2 (22.0-35.0 Percent).

Deb, Antibodies need testing. That will show an autoimmune disease. You can have normal (other) labs but have an autoimmune Thyroid - and and need meds.

TSH range is close to 2. Many Drs are now treating TSH over 2 as abnormal. The range has changed in last few years and is now below 3.5.

Headaches can be a symptom of a lot of things. But brain fog is a strong Thyroid symptom. Do you feel cold ? How is your basal temp ?

Is a problem. I found a dr. in Australia who prescribed (though not very happily) armor. But I only get to go there once a year.... not due to get there for a few more months.

Sally, You may have to work on this - and try to stock up each time you are here.

[darlindeb25]

The range has changed in last few years and is now below 3.5. What do you mean--anything below 3.5 is bad? I am trying to understand this all--thank you for helping me.

[georgie]

Yes. The lab range you have is the old one. TSH test is a standard test and most labs now are (0.3 - 3.5) and there is talk that it is still too high.

My Dr and many others start treating TSH higher than 2 as HypoThyroid. My husband had a TSH of 2.2 and was started immed on meds and is up to 285 mg Armour !

And if you have an Autoimmune disease of the Thyroid - the TSH is USELESS. It is not accurate to dx Autoimmne Thyroid.

Autoimmune Thyroid is dx by a blood test for Thyroid Antibodies. You haven't had that done.

[e&j0304]

I see that this is an old thread so maybe I should have just started a new one, but I have a question for all of you.

My dd's thyroid numbers have also gotten worse on the gluten free diet. We are yet to find a dr. who will treat her however...

Before the gluten free diet (In Aug 2005) here were her labs: TSH 2.75

Free T4 1.34

In January 07 her labs were: TSH 3.65 the range is .34-4.82

Free T4 0.6 the range is 0.6-2

I know that the TSH reference ranges have changed but her dr. just said that her results were "questionable" and that we would retest her in 3 months. What do you think? We then took her to another dr. who said that her numbers are like that because of vitamin deficiencies. She said that all of my dd's problems are likely due to lack of vitamins. She suffers from constipation, hair loss/thinning, leg pain, short stature, and a constant bluish mottling on her skin. Why would she be getting worse on the diet? We have been gluten free for 1.5 years now. She is not proven celiac. Her blood test was negative and she never had a biopsy. She tested positive through enterolab. Her other symptoms are much better gluten free and her hair is actually much better than it was. But she is obviously still having issues and her numbers are showing that.

Any ideas?

Thanks!!!

[wowzer]

I've been taking synthroid for years. I see all the numbers from their labs. I'm trying to make sense of them. I happened to have my thyroid tested when I had my celiac blood panel. I asked for a copy because I just couldn't believe it came out negative. It says my TSH is 0.332L and T4 is 9.3. I guess it will be interesting to see if anything changes after being on the gluten free diet.

[super-sally888]

Hi, maybe the thryoid getting worse has nothing to do with the diet. I don't see why it would. The diet is actually pretty healthy if you stick with natural foods. My thyroid is just getting worse over time....

Her labs even before the diet were not so good. TSH for people with hypothyroid should be 1.0 or slightly less (or at the bottom of the normal range), FT3 and FT4 should be at the top of the normal range. Your DD definitely should have an increase in her meds. Some of her symptoms may be due to hypothyroid not anything else. I would see a dr and insist on having her meds increased. It makes a huge difference to energy and quality of life to have hypothyroid properly managed. What meds is she taking. Thyroxine? That works for some and not for others. I personally find I feel better on armor (natural thryoid). BTW many labs already use a maximum of 3.5 (I think, or is it 3.0) as normal. So DD is already too high.

Be aggressive in sorting this out. It really makes a huge difference. Best wishes.

Sally

Before the gluten free diet (In Aug 2005) here were her labs: TSH 2.75

Free T4 1.34

In January 07 her labs were: TSH 3.65 the range is .34-4.82

Free T4 0.6 the range is 0.6-2

Any ideas?

Thanks!!!

[georgie]

I've been taking synthroid for years.

If you don't feel well depsite Synthroid - go back. There is another Thyroid med available and many find it works better for them. Armour.

Be aggressive in sorting this out. It really makes a huge difference.

I second this, e&j0304,just keep fighting. Your DD is HypoThyroid. If its autoimmune those TSH levels will change all the time. That's how it looks.

[e&j0304]

Hi, maybe the thryoid getting worse has nothing to do with the diet. I don't see why it would. The diet is actually pretty healthy if you stick with natural foods. My thyroid is just getting worse over time....

Her labs even before the diet were not so good. TSH for people with hypothyroid should be 1.0 or slightly less (or at the bottom of the normal range), FT3 and FT4 should be at the top of the normal range. Your DD definitely should have an increase in her meds. Some of her symptoms may be due to hypothyroid not anything else. I would see a dr and insist on having her meds increased. It makes a huge difference to energy and quality of life to have hypothyroid properly managed. What meds is she taking. Thyroxine? That works for some and not for others. I personally find I feel better on armor (natural thryoid). BTW many labs already use a maximum of 3.5 (I think, or is it 3.0) as normal. So DD is already too high.

Be aggressive in sorting this out. It really makes a huge difference. Best wishes.

Sally

Hey thanks for the responses! We actually don't have her on any meds at this point. No dr. we have seen seems to think she needs them. Over the past year her numbers got worse on their own and she was never on any meds at all. Does she need them? Her current dr. thinks that her thyroid will correct itself if she stays on this vitamin regimine. I have no idea what to think. She's only a 4 year old little girl and she's already been through so much. We have been dealing with some of these issues since birth. I really just want this figured out before she has to go to Kindergarten in another year.

Thanks again