Feeling desperate -where am I going wrong on T3 and T4

[lizanne]

Hi All

Sorry it's me again. I am getting desperate and I can't figure out where I am going wrong, goodness knows I have tried to sort this out for myself but really failing here.

I have switched from Armour (I was on 3.5 grains) to T4 (125mg) and T3 (40mg) in October 2012 as I wanted NHS prescription. I have got Paul Robinsons CT3M book and was hoping to start that protocol but I am in too much of a bad mess. Since January this year I feel I am going really downhill with a lot of horrible old symptoms returning.

My main symtpoms are:

Headaches

Brain Fog (really bad)

Hair falling out again (really bad)

Nails breaking

Feeling down

Low motivation

Feeling really cold

Nausea mid afternoon - I really feel I am going to be sick

Very, very tired

I have posted all the recent tests I have had below. I am clueless as to what to do or change next. I am talking to the private doctor I see who wants to run some more tests and believes I may need DHEA and Pregnenolone. That may well help. But am I on too much or too little T3 and T4. Shoud I cut the T4 and concerntrate on T3.

I apologise for this long rambling long post, I am really lost and finding it hard to concentrate and think. Sitting here covered in blankets with coat and scarf on (I am indoors!). Maybe I have gone really hypo again??

ALL RECENT TEST RESUILTS BELOW

Adrenal/cortisol/DHEA levels Resistance Stage 3 - Maladaption . Tests done Feb 2013

1 (after waking at 7am)

results 17.6. Results on the normal range. The range was 12-22

2 (4.5 hours later)

results 4.8. Results low and outside the range. The range was 5-9

3 (another 4.5 hours later)

results 2.6. Results low and outside the range. The range was 3-7

4 (just before bed time)

results 1.4. Results in normal range. The range was 1-3

total daily cortisol 26.4 (range 21 to 41).

DHEA levels

0.08 (results were low) range 0.30 to 1.00

0.10 (results were low) range 0.30 to 1.00

DHEA:Cortisol Ration 0.34 (results were low) range 1.0 to 4.0

RESULTS AND RANGES NOVEMBER 2012

Vit B12 - 514 (range 187-883)

TSH 0.01 (range 0.35-4.94) so this has been labelled as overtreated

Free T4 level 11.25 (range 9.01 - 19.05)

Vit D 114.2 (range 80-150) VIt D has finally come up after supplementing, however the latest batch of Vit D tablets I have are only 25ug/1,000iu each so maybe I need to increase number I take per day?

Serum Calcium - 2.24nmol (range 2.10-2.55)

Serum Albumin 40g/L (range 35-50)

[nobodysdriving]

you can try to do the CT3M method by Paul Robinson, to be honest you don't have to be in a good state to do this, you say you are in too much of a mess to do it.....that would be a reason to actually do it right? you have low cortisol throughout, that is a good indicator to do CT3M, your cortisol is low but could be worse (ie in the morning it is still just a touch above mid-range), so I think you 'may' be ok without steroids and just with CT3M.

I supplement with a small dose of DHEA, 12mg daily sublingually, my private doctor tells me such a low/physiological dose at my age (over 40) will be ok.

what is your iron level? any ideas?

[lizanne in reply to nobodysdriving]

Many thanks for replying and you are right -this is probably a good a time as any to start CT3M.

I have Paul Robinsons book and have been ploughing through it. I am really struggling with brain fog and hair loss (lots of lists everywhere in my house!) so I struggling to understand some of the sections in the book. I have just finished the section about how long it takes T4 to clear from the body so I guess I should stop taking T4 altogether and start keeping a diary and using T3 early in the morning,

I thought my cortisol reading was ok as the morning and evening tests were in range and it followed the curve of high in morning to low in evening through the day. I obviosuly have real issues with low DHEA but I think doing the CT3M would help the DHEA level come up as it takes the strain off the adrenals. Would that be a correct assumption?

[Totoro]

Do you have T3 blood test results?

[lizanne in reply to Totoro]

I havent had T3 tested for a while. My NHS gp agreed to do the basic blood tests that I listed here and I paid to do the saliva test privately. The private GP I see is good but very, very expensive. He wants to run urine test to check adrenals and DHEA as that is what he goes by rather than the saliva test so I have to pay for those tests and he will then prescribe DHEA and pregnenolone based on those test results.

[Jackie]

Hi From my experiences I would say find a really good endo who looks after all the endocrine system and more.Vit D must only e taken if corrected calcium is in range, yours is but this is endo too ,, repeated tests are always needed before dose rise in D. so is calcium. endo.I know my good endo favours T4 and adding T3, according to results, then if no good armour and if that no good just T3 ( last resort). I have very low T3 ,to keep it just below top of range ( where I need it) i have 2and half grains armour and 20mcg T3 , I cannot take Thyroxine.My TSH is so low unmeasurable but needed like this to be OK

I hope this helps.

jackie

[lizanne in reply to Jackie]

Thanks Jackie. You are lucky to have a good endo. I dont have an endo. I was originally to referred to one when my hypo symptoms started and he ran some tests then told me TSH was in range and dismissed me. What he actually said to me was that I should stop looking for problems that aren't there and get on my with my life.....I will never forget that - I was so upset! Then I saw a private GP for about 6 years who prescribed armour, and then as I was stable and the prescriptions and appointments were costing so much, he agreed to write to my GP and advise what T3 and T4 meds I needed so I now get an NHS prescription for T4 and T3 which is great. I have booked to see the private GP again to see what we can do re low DHEA as per post above. At the end of the day I guess I am trying to manage my own health with as much information as possible, thanks to the help of this great forum

[Jackie in reply to lizanne]

Hi I saw 2 private thyroid docs originally, who were very good but only on thyroid and did none of the tests needed. Then I had to see an endo ( because of my heart ), what a difference! There are some dreadful ones, you should hear my endo on the subject! I would try and find another one, however, never go by GP ( they have favourites) , look up hospitals then individual CV`s for the endos on the WEB , cross reference to private local hospitals too. The CV`s give a lot of info and then ask as many people as possible. I hope that is some help.Do also remember how useful private bloods on the WEB can be, if GP etc negligent.I always use Blue Horizon for bloods, not private hospitals as very expensive, same LAB at the fraction of the cost.

Best wishes,

Jackie

[heathermr]

I would try just taking T3 and cut out all the T4. If you read the section in Paul's book about TSH values, the lower the TSH -ie like yours, the more the conversion of T4 is to Reverse T3 rather than T3 itself and this will oppose the T3 you are taking. Hence the T4 and T3 you are taking are literally cancelling each other out. I was like this with dreadful hypo symptoms despite taking large doses of both T4 and T3. Last year I stopped the T4 and have improved dramatically since then losing a stone and a half and regaining my life back. I feel so much better on just the T3. MY TSH is now unreadable but I can live properly again. I also have a diagnosis of dementia and even this has improved too!

Good luck,

Heather

[lizanne in reply to heathermr]

Hi Heather

That's fantastic news that you have improved so dramatically on just T3 and your explanation of the T3 and T4 cancelling each out makes sense. Like you I still have hypo symptoms despite all the meds I have had over the years so there is obviously something not working!

Many thanks for sharing, that gives me some hope that T3 only is really worth trying.

Lizanne

[puncturedbicycle in reply to heathermr]

Omg, I just stumbled on this comment. I wonder if this has anything to do with what is happening to me. I must get that book.