What can I try next?: Dear everyone, really... - Thyroid UK

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What can I try next?

stillhopeful profile image
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Dear everyone, really appreciate the advice I've had in the past from this forum. Any suggestions ftor what to try next? Had Chronic fatigue for 20 yrs but managed by working part time. Diagnosed hypothyroid Dec 16. Tried Levothyroxine for 16 months. Then went to private GP for armour NDT as health was really deteriorating. Definately better on Armour but still not back to pre hypothyroid health. Tried autoimmunne diet last October and lost post hypothyroid weight ( hurrah!) but no improvement in energy levels, muscle weakness, memory loss, low mood, irritability etc. Here are latest blood tests, earlier ones on profile.

7thMay19

patient result. normal range

hs-CRP. 1.31 range <5.0.

Ferritin. 140.0 range 13-150

TSH L <0.005 range 0.27-4.20

T4 Total 101.0 range 66-181

Free T4 19.6 range 12.0-22

Free T3 H 7.75 range 3.1-6.8

Anti-Thyroidperioxidase abs

9.7 range <34

AntiThy/glob 19 range <115

Vit D 111. range 50-175

VitB12. H 570 range 300-569

Serum folate. 44.70 range 8.83-60.8

I do supplement. Thanks for any advice.

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SeasideSusie profile image
SeasideSusieRemembering

stillhopeful

TSH L <0.005 range 0.27-4.20

T4 Total 101.0 range 66-181

Free T4 19.6 range 12.0-22

Free T3 H 7.75 range 3.1-6.8

Have you ever felt well on any dose of Armour? Those results show you could be overmedicated. It's usual to see a low/suppressed TSH, a lowish FT4 and FT3 in the upper part of the range.

VitB12. H 570 range 300-569

Do you take supplements? What's the unit of measurement for that test?

You mention an adrenal test in your profile, did you do anything about the high cortisol for the first two samples?

stillhopeful profile image
stillhopeful in reply toSeasideSusie

Felt well for about 3 weeks when I first started. That wore off. Was on 3/4 gain to start and gradually increased to reduce tingling. Loath to reduce NDT because I dont want to lose energy. No hyper symptoms. Take temperature. I do take supplements. Unit of measurement- pmol New range The only thing I did about the high cortisol was take dhea 50mg 1x daily. Didnt seem to make much difference but did notice felt worse off it, so gone back

SeasideSusie profile image
SeasideSusieRemembering in reply tostillhopeful

I'm just wondering if the balance of T4:T3 in Armour is right for you as it's fixed at approximately 4:1, some of do better with synthetic T4/T3 and find the right balance. I find 6:1 is right for me.

VitB12. H 570pmol/L range 300-569 = 772pg/ml

There's no need to worry about this, according to an extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

The only thing I would say is that you can have a good serum B12 result but a poor Active B12 result, and it's the Active B12 that's available to be used by the cells.

The only thing I did about the high cortisol was take dhea 50mg 1x daily. Didnt seem to make much difference but did notice felt worse off it, so gone back

It might be worth trying an adaptogen. What were the other two results - afternoon/evening. It could be useful to repeat the adrenal test.

stillhopeful profile image
stillhopeful in reply toSeasideSusie

Not very keen on going back to Levothyroxine as felt so ill on it. Would it be worth trying a different NDT? What's an adaptogen? The afternoon evening cotisol results were normal. Is there a practitioner I could go to who would look at my adrenal problem?

SeasideSusie profile image
SeasideSusieRemembering in reply tostillhopeful

Would it be worth trying a different NDT?

Some people do find changing brands helps, so it's a possibility.

What's an adaptogen?

Adaptogenic herbs, they can lower cortisol. But if your afternoon and evening results are normal you'd have to be careful not to lower those, it's a fine balancing act. As your test is 12 months old, it might be worth repeating it so you have a starting point, it could be very different from a year ago.

Is there a practitioner I could go to who would look at my adrenal problem?

I don't know of one, I certainly wouldn't recommend the one I consulted.

stillhopeful profile image
stillhopeful in reply toSeasideSusie

Thank you for your patience in answering my questions. I am a supporter of Thyroid UK and really value your work. Could I just ask one more? What makes you think that the active B12 was not good because one of the adrenal (urine) tests I did a year ago did come out as low B12 but the blood tests come out as high?

SeasideSusie profile image
SeasideSusieRemembering in reply tostillhopeful

What makes you think that the active B12 was not good because one of the adrenal (urine) tests I did a year ago did come out as low B12 but the blood tests come out as high?

You've had a Serum B12 test done and I quoted from Sally Pacholok's book that gives recommendations for Serum B12 levels. As it recommends up to 1000pg/ml I said not to worry about yours - even it's been marked as high, it's not a problem according to that quote.

You haven't had an Active B12 test done so I haven't said Active B12 is good, I said it's possible to have a good Serum B12 but poor Active B12 (if it's tested). This can be helpful for anyone who has symptoms so they can get a more accurate picture of their B12 status.

one of the adrenal (urine) tests I did a year ago did come out as low B12 but the blood tests come out as high?

I don't know which test this is. The adrenal tests I know of are saliva tests which test the adrenal hormones - cortisol and DHEA, I've not seen one that is a urine test and includes testing B12.

stillhopeful profile image
stillhopeful in reply toSeasideSusie

It was a metabolic analysis markers test (urine) (Genova diagnostics) that came as a package with the adrenal stress profile (saliva). It showed low B12 being excreted. Rereading your reply I can now see you did say you can have low active B12 not you did have.

Thanks for all your help. I have a few leads to follow now and will keep posting to get info on different NDTs and practitioners. I appreciate what you do especially if you have health problems your self.

stillhopeful profile image
stillhopeful

Thanks reallyfedup123, will have a look at both those.

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