I'm still around!!!

I'm sorry I have not been here much lately.     I am still alive, and I promise to post some things VERY soon!!    I have missed you all!!   I don't have time right now to catch up with everyone, but I will do that very soon also.     I hope you're all doing well!

Audrey

And I am finally back to update my situation.

My calcium and PTH levels are looking GREAT, so I guess I've been cured of this disease.   I'm very happy about that.    My latest calcium was 9.1 (2.3 in UK numbers), and my PTH was 55 (5.7 in UK numbers).  

I am still working on the iron deficiency, but that is improving.   My ferritin has climbed from 11 to 56.   My hematologist wants to see this between 70 and 150.  My iron had climbed from 88 to 103.     I think this needs to be around 110 or higher.  I'm getting close!    I'm still having a bit of trouble with my red cells, as my MCHC is just below the normal range at 32.3.  Normal is 33.0 - 37.0.

My white cells are now all low/normal, but within normal range.

My thyroid continues to be an issues, as my TSH is still below normal range, but I do take an NDT, so this is normal.   My nephrologist increased my Nature-throid about a month and a half ago.   He wanted to see my FT3 and FT4 a bit higher, as the FT3 was mid-range, and the FT4 was low/normal.     Raising the Nature-throid didn't do much of anything.   My FT3 stayed exactly the same, as did my TSH, but my FT4 dropped.    This makes me wonder if I'm pooling now.    I would appreciate some thoughts on this.     After seeing that my FT3 didn't increase any, I increased my dose by 16.25 mg again, which is the same amount it was increased a month and a half ago.    I haven't yet spoken to my nephrologist about this latest increase on my own.   This man is so wonderful.  He and I agree on EVERYTHING, so I'm pretty sure he would agree that I needed to try this.   However, if I am pooling, I will need to adjust my meds a bit differently.    I will see this man again on January 19th to discuss this.    I still have a LOT of hypo symptoms which makes me think I am still not optimal.   

The UTI situation is not good.   I have now had 14 UTIs this year!!!   I had to take 3 rounds of antibiotics for 2 of these infections, because my former urologist wanted to try another antibiotic, and clearly it was not working!!!   So I've taken antibiotics 18 different times now this year for UTIs!!!  

I've also been having trouble with a bit of leakage over the past month and a half.  This is REALLY bothering me!  

I saw my new urologist on Tuesday.  I went for a cystoscopy, but I wanted to speak to him first.    He asked me what kind of pain I have and how often.    I told him I get sharp, little, pains up in my bladder a few times a day between infections, and as a new infection nears, the pains become longer and stronger.    He said it didn't sound like interstitial cystitis since the pain was not constant.   I agreed.    He asked me if I had tried cranberry extract for prevention.   I told him I take 4 cranberry gelcaps daily, along with grapefruit seed extract to raise my urine pH, UT Synergy, oregano/flaxseed oil, silica/horsetail extract, and sodium-bicarbonate to also raise the urine pH.   He said, "Wow."   He asked if I ever tried D-mannose.    I said, "Oh, my gosh, how did I forget to list THAT?  Yes, I take 10 D-mannose capsules daily."    He just shook his head.   He was amazed that all of these things can't stop the UTIs.     He asked me if I would consider taking a daily antibiotic.   I told him my former urologist has been trying to convince me to try this for a few  years now, but I kept telling her I wanted to try to take care of the problem myself by trying various natural supplements.   I told him I have probably had over 100 UTIs over the past 14 years, and that last Friday night I had the most painful one ever, and I decided at that time, that I am ready to take a daily antibiotic!     This infection was so painful, I was ready to head over to the ER for help!    I thought I was going to die!    So he prescribed Macrodantin. 

I started taking the Macrodantin Tuesday night.    My head started hurting immediately.    I figured if that was the worst of the side effects, I could deal with it.   Unfortunately, all 4 eyelids started twitching shortly after.   This scared me because of the problem I had with the Cipro for 3-1/2 straight years while taking that drug.   At that time I was twitching all over my face nonstop, along with twitching nonstop in my arms and legs.  I also had severe needles and pins and tendon pain.    Last night I started twitching around my mouth and above my eyebrow, and the needles and pins started in my hands and feet!      

This morning I called my new urologist and told them that this drug is NOT a good fit for me, and I wanted a different one.    She said she would talk to the doctor and call me back.  She hasn't yet.

I still think the UTIs are due to my bladder falling again, as they stopped completely for 3-1/2 straight years when I had my bladder lifted several years ago, after getting them every week or 2 for several months!   But the doctors keep telling me my bladder has not fallen again.

My former urologist told me I was getting them due to lack of estrogen.   I think I mentioned that on here previously.   She said it could take up to 6 months for this to work.    After 7 months, I was getting UTIs every week or 2.   She realized this was not going to help!

So this has been a big issue with me for quite a wile, and I continue working on it.   I am very afraid to take a daily antibiotic, but I am also very afraid to take a strong antibiotic every week or 2, so I don't think I have a choice now.   I'm very upset about this and feeling very defeated.    Sometimes life really stinks!!!!

So this is where I am now.  

Time to get back to work on the Christmas stuff here.   I just wanted to let you all know how things are going for me, and that I am still around and sorry I can't post more often.     I will continue to try to keep up with you all.    

Audrey

Little Audrey wrote:
My thyroid continues to be an issues, as my TSH is still below normal range, but I do take an NDT, so this is normal.   My nephrologist increased my Nature-throid about a month and a half ago.   He wanted to see my FT3 and FT4 a bit higher, as the FT3 was mid-range, and the FT4 was low/normal.     Raising the Nature-throid didn't do much of anything.   My FT3 stayed exactly the same, as did my TSH, but my FT4 dropped.    This makes me wonder if I'm pooling now.    I would appreciate some thoughts on this.     After seeing that my FT3 didn't increase any, I increased my dose by 16.25 mg again, which is the same amount it was increased a month and a half ago.    I haven't yet spoken to my nephrologist about this latest increase on my own.   This man is so wonderful.  He and I agree on EVERYTHING, so I'm pretty sure he would agree that I needed to try this.   However, if I am pooling, I will need to adjust my meds a bit differently.    I will see this man again on January 19th to discuss this.    I still have a LOT of hypo symptoms which makes me think I am still not optimal.   

Hi Audrey

As your FT3 did not increase, it suggest that you are not converting T4 to T3 very well.
This can be caused by deficiencies in in a number of vitamins and minerals.

I'm not sure if you can access the following post on vitamins and minerals without being a member of the TPA forum, so let me know:
http://www.tpauk.com/forum/resources/recommendations-for-all-new-members-suffering-symptoms-of-hypothyroidism.1/

NDT contains both T4 and T3 (around 20%, the rest comes from conversion), so your FT3 should respond to an increase in dose.
But, as it is a big but, it could be that one of your other conditions, or other medication, is inhibiting the absorption of T3 from your gut into your blood-stream.

In my case, both the phosphate binder and statin medication inhibit the absorption of thyroid hormones, so I now take my T4 and T3 at least 1 hour before breakfast and this has helped.

From memory, only one of the NDT brands can be taken sub-lingual.  The others have to be absorbed in the gut.
There's some info here that may be interesting reading:
http://www.tpauk.com/forum/resources/what-is-the-difference-between-thyroid-thyroid-s-and-t-r.2579/

Edwin

Hi Audrey,

So sorry to hear that your health continues to mystify the medics. I'm afraid I'm totally ignorant about Thyroid and UTis treatments but just wanted to send you big hugs and let you know I'm thinking of you. Especially in the busyness of Christmas.

Lots of love,

Dee
xxxxx

Thanks, Edwin and Dee.    Yes, I'm about sick to death of all the research, appointments, and tests.    I'd sure like to find a doctor who had some answer for me, so I could get on with my life and not have to spend every day thinking about health issues!!   

Edwin, thank you for that link.   I have looked at it briefly.  I will read it more thoroughly very shortly.    I know my ferritin is still not quite where it needs to be.  I am still taking iron daily for this.

My magnesium is low/normal at 1.8 (normal is 1.5-2.9).  I started supplementing with magnesium malate a little over a month ago.  My doctors think that level is fine, but I don't like it.    I have supplemented with various magnesium products in the past, but stopped when the doctors told me I didn't need it.    I disagree.  

I have never had my folate, zinc, or copper tested.    I will bring this up at my next nephrology appointment.   My nephrologist, a.k.a. the nutty, little professor, is the only doctor who really cares and takes the time to figure things out!    I'm sure he would have no problem ordering these tests for me.   

My B12 when tested 10 months ago was 658.   This link suggests it be between 700 and 800, so according to this, mine is just a bit low.

The vitamin D is a bit confusing to me.   My vitamin D 25-Hydroxy was 93 when tested in August of 2014.    My 25-Hydroxy vitamin D3 was 80.    It was the D 25-Hydroxy which was used to diagnose the hyperparathyroidism, but this link suggests it is the vitamin D3 that needs to be over 80.   I guess either way, my levels were good back in August of 2014.   I believe I was supplementing at this time.   I need to get it rechecked soon.    Something else to ask the nephrologist.

Yes, I would think my FT4 AND FT3 would have increased with that latest NDT increase, but it was increased so slightly, that might be why it didn't, I guess.    I had been taking 130 mg daily, and the doctor increased it only by 16.25 mg.    That's like next to nothing.    When I saw that my FT4 level dropped, and the FT3 stayed exactly the same after increasing by 16.25 mg, I increased it by 16.25 mg more.     I think I probably need much more!      I know I will have a problem with all of my other doctors when my TSH drops even lower, as it is now 0.06, which is already considered too low.    I know that doesn't mean diddly when you are taking NDTs, but none of them understand this.   The only doctor of mine who does get this is the nephrologist, so I will be running this all by him.   My next appointment isn't til January 19th though.     Meanwhile, I am VERY full of water!     My hematologist told me the edema could be from taking too much thyroid meds.  He said that because he did not like my TSH so low, and determined I was now hyperthyroid due to that low TSH.     At this point I don't know what to think.   I do think I need to get my FT3 and FT4 both up higher to see if my symptoms will resolve once they are higher.   This would help determine whether or not I'm taking too much medication.     So tired of all of this!    Sick of being full of water, gaining weight, and feeling like crap.

Thanks for your help with this!    It's so nice to have someone who cares and wants to help!

Audrey

Once you are taking NDT (or even T3), the TSH level is irrelevant, as it doesn't give any meaningful information.

If your FT3 does not increase with an increased dose, then any further dose increase will be counter-productive.

It's best to focus on the mineral and vitamin deficiencies, by getting their levels into the middle of their respective reference ranges.

So many docs incorrectly assume that you are OK if the levels are anywhere in the reference range which is another battle that needs to be fought.

Edwin

Yes, you are right, Edwin, the TSH is now irrelevant for me, and I only have 1 doctor who understands that, which is why I've turned my thyroid issues over to him.   

I agree that I need to work on my vitamin and mineral deficiencies.    I am praying they are the reasons for the rest of my symptoms, but since the FT3 and FT4 both need to be higher, I'm wondering if more thyroid meds still might help with this.    I am afraid to raise it too high, so I will keep it where it is for now and work on the other deficiencies.     I think that is good advice.   Thank you!

Audrey

Love to you Audrey and I hope you will be able to figure this one out - you usually do!

I have looked at the links that Edwin provided and they are really useful - thanks Edwin.

I am experimenting with increasing my magnesium levels at the moment so as to try and avoid taking the statins - I came across some Polish research that concluded that taking supplemental Mg could have just as good an effect - and I have gone back onto thyroxine again (plus T3 - because I seem to have a conversion problem, too) in the hope of reducing my high cholesterol that way as well. My high cholesterol levels seem to run in tandem with my TSH when it is high. I'm waiting for some blood test results and will let you know how the cholesterol etc are looking with this new arrangement.

Strangely enough, going back on the thyroxine (I didn't wish to, but could see no way of getting NDT prescribed) appears to have had the unexpected effect of shrinking my rather large (10cm) ovarian cyst (now just over 8cm) a little. I had read that thyroxine often helped polycycstic ovary syndrome in younger women, but wasn't expecting the same effect in an old gel like me! I am on the surgeon's list to have the cyst removed, but the smaller it is at surgery the easier it will be, so I'm hoping the thyroxine will continue that effect.

Just a thought, Audrey, but why not try increasing your magnesium again, perhaps with magnesium citrate? Lots of twitching symptoms can be down to low Mg, and perhaps you and I both need more than most people. I am taking an extra 150mg daily, mostly around lunchtime, but often around 20.00h if I have forgotten, and then I seem to get a decent night's sleep as well. Bowel "looseness" usually signals too high a dose, as I understand it, but that can sometimes be a blessing as well!

Good Luck, Audrey, and I hope you get some answers in January.

Love to Everyone, from Tigerlily xxxx

Well, Tigerlily, it sounds like you too are still working hard at resolving your health issues, and it sounds like you are making some progress!     Yes, high cholesterol is a symptom of hypothyroidism.   I know mine dropped some as I increased my thyroid medication, and my thyroid levels increased.

Also, great to hear about the shrinking ovarian cyst!    Seems like the thyroid really does control just about every aspect of our existence.   

I have tried to increase my potassium and my magnesium both, but the magnesium might be tricky since I'm already dealing with the relatively loose bowel issue.    Both, my potassium and magnesium are always low/normal in range.    I would love to see them both increased.   I do take both supplements daily.  I have for years.    Just have to keep trying, I guess.   

I'm really hoping that by increasing the thyroid levels, iron, magnesium, and potassium, I can help build my body up so I can prevent those darned UTIs once I'm off of the daily antibiotic.    I'm also continuing to use the estrogen cream, since my former urologist still thinks lack of estrogen is the cause of the UTIs.    I'm still   hoping and praying I can take care of these issues myself!    

Onward we go!!

Audrey

On the subject of thyroid, besides low vitamins and minerals, there are two other things that can interfere with the absorbption of T3.

One is what can be described as Adrenal fatigue.  The Adrenals work harder to compensate for hypothyroidism, but they reach a point when they run out of steam.
Tired adrenals are one reason why there is no improvement when increasing the T3 dose.

http://www.tpauk.com/forum/resources/cortisol-and-your-adrenals.2559/

The other is an increase in Reverse T3, which blocks the absorbption of T3.
This can be caused by having too much T4 in the blood, or it could be casue by a non-related illness.
In this case, it is an attempt to restrict the metabolism as a way to get you to rest and recover from the illness.
In this situation, increasing the T3 dose has no effect.

http://www.tpauk.com/forum/resources/thyroid-hormone-resistance-rt3.2132/

Edwin

Well, Edwin, I have been dealing with hyporeninemic hypoaldosteronism for some time now.    I diagnosed myself about a year and  half ago and then had it confirmed by the appropriate tests.     My kidneys are not producing an adequate amount of renin.   Renin triggers aldosterone production.  Aldosterone is produced by the adrenal glands.    It regulates our blood pressure.  So there is a bit of a problem with my adrenal glands, but I'm not sure if it's just from the low renin or if there is more to it than that.    This is why I've been taking fludrocortisone for about a year and a half now.     I won't go into detail here, but I have had a very stressful life, and I have worried about adrenal insufficiency for some time now, not just adrenal fatigue.     I have not yet had the 4-point cortisol test done, but I have had my cortisol tested a few times through the years, and that is always at a good place.    I know sometimes the 4-point test can reveal a problem when the routine cortisol check cannot.     I need to get that done.  

My reverse T3 was checked 11 months ago.  It was 13 at that time.   So I don't think that is the problem.  Although, people in the Facebook thyroid group have told me it should be lower.   If normal is 8-25, I would think 13 is pretty good.

I really think I need more thyroid meds, but, like I said, I'm afraid to raise them too quickly.   Most in the Facebook group say people need 3 or 4 grams of NDT.   I'm only taking 2-1/2 right now, and I just increased it from 2-1/4 recently, when my levels did not change at all after increasing, but we only increased it by 16.25 mg (1/4 grain) when I was already taking 130 mg (2 grains).   I am willing to take it up to 3 or 4 grains to see what my levels do, but I refuse to do it quickly, and if I would start to experience any hyper symptoms, I would cut back immediately.   

I will be seeing my nephrologist again on the 19th of this month.   That's only 3 weeks away.    I will discuss all of this with him, since he's the only doctor I have who understands all of this.

I will check out your links now.   Thanks again for your help!

Audrey

Yes, thanks for the links, Edwin - really useful.

Tigerlily xx

Hi Audrey

The advice on the TPA forum for finding the right dose of NDT is to increase the dose every two weeks until you notice hyperthyroid symptoms and then drop back to the previous dose.

http://www.tpauk.com/forum/resources/how-to-treat-using-natural-thyroid-extract.2200/

Edwin

Thanks again, Edwin.   Yes, I think that is what I need to do.    That is the only way I will ever know if my remaining symptoms are from hypothyroidism or not.   And if I don't try it, I will be miserable for the rest of my life, when possibly I wouldn't have to be.

Audrey