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Post by rebecca on Mar 4, 2009 16:50:02 GMT -5
Hi, I'm back at the endo for MRI and labs tomorrow. I am diagnosed as hypo pituitary with low thyroid and 2nd AI. I have requested aldosterone and renin levels to be drawn but I see a lot of people have b12 and ferratin levels. My hgb has always been stellar. Is there a reason for me to have these checked? Can you recommend anything else? I am still very fatigued. Had a free t4 drawn yesterday and it was 1.2. All the other labs will be done tomorrow. Thanks
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Post by justaustin on Mar 5, 2009 7:37:36 GMT -5
Most hypothyroid folks have low B12 and low ferritin. This is due inpart to slowed digestion, low gastric acid,lowered body temps with subsequent altered absorption of nutrients/minerals. Low levels of these factors can have symptoms which overlap with hypothyroid sx as well. Low B12 can impact nervous system function. Left unreplaced long enough, neurodeficits can become permanent.
Don't settle for Normal. Normal and Optimal are not the same. B12 reference ranges vary widely from country to country. The level of USA is crap. You can have parasthesias with levels as low as 500. Japan has lower reference range of 500 (as opposed to 200's in USA). Most healthy folks are born with level of 2,000. The exception being a pregnant mom who is deficient. Newborn will not have this level.
Don't ASS-U-ME that you are not iron deficient just because your hgb/hct look good. I've had my H&H at top of range too, but my ferritin was 19. Once ferritin drops to 10 or less, then the H&H really starts to drop.
OPTIMAL ferritin (70-80) is required for proper conversion of T4 to T3. Low ferritin may result in intolerance to thyroid hormone replacement.
Low B12, low ferritin, low cortisol can also result in issues with reverse T3. Rather than T4 going to T3(accelerator), it goes to rT3 (brake).
You are welcome, Laurie
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Dana
New Member
Posts: 85
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Post by Dana on Mar 5, 2009 10:00:19 GMT -5
Most hypothyroid folks have low B12 and low ferritin. This is due inpart to slowed digestion, low gastric acid,lowered body temps with subsequent altered absorption of nutrients/minerals. Low levels of these factors can have symptoms which overlap with hypothyroid sx as well. Low B12 can impact nervous system function. Left unreplaced long enough, neurodeficits can become permanent. Don't settle for Normal. Normal and Optimal are not the same. B12 reference ranges vary widely from country to country. The level of USA is crap. You can have parasthesias with levels as low as 500. Japan has lower reference range of 500 (as opposed to 200's in USA). Most healthy folks are born with level of 2,000. The exception being a pregnant mom who is deficient. Newborn will not have this level. <snip> You are welcome, Laurie I just wanted to add to what Laurie said with B12 levels. About 13 months ago, I went to the doc because my left leg went numb from my knee up to my hip. I was diagnosed with parasthesias. Thankfully though the doc ordered b12 levels to see if that might be causing it. They came back and he said they were the lowest he had ever seen at ~250. I got about 4-5 b12 injections and finally the numbness went away! So even though I was in range "normal", I had developed parasthesia! Not very normal if you ask me.
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Post by justaustin on Mar 5, 2009 18:20:26 GMT -5
In my case, I have Pernicious Anemia and I have to continue home B12 injections. Sublingual B12 lozenges did not reverse my macrocytic anemia or my parasthesia. It got worse until injections. Dana...You are lucky your doc was on the ball. Laurie
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Post by rebecca on Mar 6, 2009 16:57:47 GMT -5
The results are in! Free t4 - 1.2 Ferritin 10 (10-151) Folate 13.7 (>3.0) B12 - 315 (211-911) Waiting for aldosterone and renin.
The endo switched me from cortisone to prednisone - thought I may be breaking down the cortisone to fast. Starting at 7 mg in AM and 2 mg at supper and can add on another dose at bedtime if needed. Gave me lots of room to experiment with dosages. Didn't want to do anything with changing the thyroid replacement until the steroids were straightened out but wants me to continue with the GH - said it can take up to 9 months to feel the difference. Also MRI showed a slight increase (1mm) in size of the pituitary stalk with a slight shift to the right. Endo still thinks autoimmune hypophysitis. Thoughts? Suggestions for replacements? Thanks
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Post by Lethal Lee on Mar 7, 2009 6:37:40 GMT -5
Hi Rebecca,
-------------------------------------------------------------- Free T4.........1.2 *lab "usual" range (0.8-1.8)
Comments:Your result is still suboptimal at only 40% We consider optimal top third to top quarter. So you are definitely undertreated at this point. You have to train/insist Endo ALWAYS tests FT3 as well as FT4 That is the active Thyroid Hormone & the FT3 level is really what determines whether Hypo & to what degree. ------------------------------------------------------------------ Ferritin............... 10 (10-151) *far too low
Comments: AHA as they say...a lightbulb moment!!! You are at BOTTOM of the reference range. Optimal is 70-90 & you need to get level up to at least 50 before changing from Synthroid to Armour. So start supping immediately. 200mg of elemental Iron is what we suggest (read label carefully). Some good forms are Proferrin (need to order online), Thorne Research Ferrasorb is another. Take 500mg Vit C with each dose of Iron. Iron twice daily dosing is better to get levels up. BUT must take Iron well away from any Calcium & Thyroid meds. ---------------------------------------------------------------------------- B12.......................315 (211-911) *15% in range
Comments: Another AHA moment. Optimal is TOP of range & at only 15% in range I would suspect you would have low B12 symptoms? You need to get on B12 sublinguals as soon as possible. Most swear by Jarrow sublingual MethylCobalamin 5000mcg . Can be ordered online through iHerb. Take at least 1 preferably 2 a day. Be cautious when you start as can "rev" up Thyroid a bit (helps use Thyroid Hormones) can also cause some detox. So may want to start 1/2 tab & work up to whole tab then 2. Optimising B12 also helps raise Ferritin. ------------------------------------------------------------------- Folate.................. 13.7 (>3.0)
Comments: Hate Labs that report this way. That "less than" range is just to avoid clinical deficiency doesnt tell you optimal or even Ref Range.
Best thing to do is get hold of a good B-Multi with active B vit forms. That will give you all the main B's including Folate. They all work together help Adrenals, help Ferritin & Thyroid. I use Thorne Research B Complex #5 there are other good ones out there too. --------------------------------------------------------------------- Waiting for Aldosterone & Renin
OK. Did you test Sodium & Potassium at same time? Alternatively can you post any previous results you have for these.
--------------------------------------------------------------------- The Endo switched me from Cortisone to Prednisone - thought I may be breaking down the cortisone too fast.
Comments: Your Endo does seem better than most we hear of!!
That said Prednisone is NOT a good choice for a longer acting steroid. It must be converted to Prednisolone in Liver before body can use it. This is a lot of extra work on the Liver.
Prednisolone is a MUCH better choice as no conversion needed. But I see you are in USA? I think it is hard to get there now excdept in liquid form which I dont recommend.
Medrol is Methylprednisolone & you can get that in USA however it is MORE expensive option!
You should also have an rx for HC as well for stress dosing. You CANNOT use the longer acting steroids for that (take too long to kick in). Also good to get Medical ID & Rx for emergency 100mg SoluCortef injection kit if you havent already.
Also note that Pred & Medrol have LESS mineralocorticoid action than HC. After switch may notice worsening of any low Aldo or Sodium/Potassium imbalance symptoms.
So more Sea salt may be needed or if not enough perhaps need Florinef (depending on symptoms & results).
Starting at 7 mg in AM and 2 mg at supper and can add on another dose at bedtime if needed. Gave me lots of room to experiment with dosages
Note 1 mg Pred (whether Prednisone or Prednisolone) = 4mg HC
am 7mg Prednisone 7mg x 4 = 28mg HC equiv pm dose Prednisolne 2mg x 4 = 8mg HC equiv
Thats a total of 36mg daily. You were on 25-30mg HC daily prior to this?
I think the am dose is too high I have never taken more that 5 mg in the am.
Been on Prednisolone for over a year now. Initially I started on 5 mg am & 2.5mg bedtime = 7.5mg Then had to do 5 mg am+2.5mg 8hours +2.5 mg bedtime= 10mg. Currently 5 mg am + 5 mg bedtime= 10mg
So you may find that higher dose shuts down ACTH & Cortisol TOO much in am.
May also find that you may do better on 3 times dosing at least initially.
If making immediate switch you will find you need to keep doing at least some HC for a day or two as takes time for Pred to start working.
Some do a switch protocol such as 1/ add 1 mg Pred to existing HC then drop 4mg HC a few days later, usually swap evening dose first as helps get through the night. 2/ keep doing this until all HC is swapped over
You could work out some version of that. Just dont be afraid to stress dose HC if you swap straight over & get low Cortisol symptoms.
Note IF you do get script for Medrol that 1 mg Medrol = 5mg HC so you will need less of it than the Pred.
Didn't want to do anything with changing the thyroid replacement until the steroids were straightened out but wants me to continue with the GH - said it can take up to 9 months to feel the difference.
Wise to wait on Adrenals being sorted. You may need to sort out electrolytes too maybe even need Florinef. Also Sea Salt maybe Potassium.
Meanwhile get working on the Iron/Ferritin, B12 start Vit C & B-Multi. Will all set you up well for starting Armour.
Cant comment on HGH as not familiar with it personally. Fractal one of our Mods started on it a few weeks ago too. Be aware it can raise requirements for Adrenal & Thyroid meds. It can also lower Sex Hormones so keep an eye on them.
Also MRI showed a slight increase (1mm) in size of the Pituitary stalk with a slight shift to the right. Endo still thinks autoimmune Hypophysitis. Thoughts? Suggestions for replacements? Well it is a very small increase could just be quality of image & interpretation of results. The "shift" maybe more of concern.
All you can do is keep monitoring it & of course if any new symptoms or worsening of existing symptoms to keep Endo informed.
As to replacements do you mean what else HRT needs replacing? You are dealing with most or testing for others at this time. Cortisol, Thyroid, Aldosterone, GH. As I said keep an eye on & test Androgens & Sex Hormones. Start HRT for them if needed.
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Post by rebecca on Mar 7, 2009 11:23:37 GMT -5
The last 2 sodium and potassium levels are: 23 Dec. 08 14 Jan 09 range 142 141 135-145 3.8 4.2 3.6-5.2
I have not been on any salt supplements but have certainly had salt cravings - I didn't realize how much so until I first started on the HC and it got sooo much less.
Yes the low ferritin and B12 really surprised me - I have already gone to the health store and gotten my sublingual b12 and the other b's. As for the calcium and the iron and the thyroid - oh my!!! - I will be taking something every 3 hours won't I? I did not buy the iron yet - there was a liquid form that they (the store owners) thought was better absorbed - any opinion?
I never thought of taking the HC at the same time as the prednisone - great idea! I was having adrenal symptoms every AM on my dosing of 20mg HC in AM. 10 in the afternoon. Even added in 5 at bedtime. I would get up in the AM very dizzy and weak - heart rate racing when I would stand up, etc. Today is day 2 on prednisone and the AM is already better but I tire very quickly. I'll add in a bit of HC and see if I can do anything beside sit on the bed and research the computer. The reason for the higher doses is also he thinks I just may require more than "average". He gets it that each body is different! At my last appointment, he went out and consulted with all the pituitary-adrenal axis specialists (at Mayo) to figure out what to do with me. He believes my symptoms and believes that I am not responding to treatment. I also appreciated that he wants to get the adrenals in line before the thyroid. That helped me to believe in his knowledge a bit more. Someone who doesn't think I'm crazy! He also very willingly drew the aldosterone and renin levels. I will call Monday to get them and post them then.
I also have a chronic low total protein level - last was 6.1 (6.3-7.9) on Jan 14th. That is about where it always is. I am not a vegetarian. Is that tied in at all?
Yes I did get my medical ID - HAHoriginals.com has some really nice bracelets - not so sterile looking. At least I got some jewelry out of this whole deal!
Oh, the prednisone - I'm pretty comfortable taking it - I have been on it several times for lupus. I understand the liver conversion etc. I rarely drink or do other liver abuses so at this point I'm OK with staying with a med that I know the doses and how my body reacts. Thanks for the med dose conversions - that really helps - I was wondering how it compared.
How long after starting iron and b vits should I wait for retesting?
I also have been having a chronic headache - frontal mid forehead - do you think that is related to all of this? Also the shift in the stalk I think would be concerning if there was a tumor somewhere but none showed on the MRI - what are your concerns about the shift?
Thanks for all the info and for this GREAT web site!!!!
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Post by justaustin on Mar 8, 2009 23:39:29 GMT -5
Have you ever sustained a head injury? Whiplash injury can be enough to result in shifting of the delicate pit stalk. Might want to have follow up MRI about a year from previous. See if there is a change or if possibly a microadenoma might be evident.
Retesting vitamin B12 is a wa$te of $$ once you begin to supplement. It will be artificially elevated. Go by homocysteine trend, urine MMA, differential portion of CBC and/or symptoms (improvements in short term memory, improvements with parasthesias, etc..).
Can restest ferritin in about 1-2months to eval progress. Be sure to stop iron for minimum of 3 days prior to retesting.
Please post your aldosterone and renin when you receive the results. Your headache may be due to needing thyroid hormone replacement increased (lovingly referred to as a hypo headache) or low aldosterone. You can try drinking a glass of unrefined sea salt (1/4)tsp. See if it helps. I get headaches day 3 of my cycle. Progesterone drops with further aldo drop. The salt water is the only thing that helps me.
You are welcome, Laurie
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