Blood Test Results, Help please... Second Cortisol test still showing as borderline Cushing's .

[Poppy_the_cat]

Apologies, I posted earlier, to the wrong forum... I'm just not with it. Sorry 😞

It's been a long, long time since I posted.Much as happened; too much.

After years of asking about a Cortisol test and being constantly denied by the male GPs who said it was only the remit of a consultant to authorise such tests... My brilliant nurse practitioner said there was no problem and added to the list! I was quite shocked.

My results have come back twice now as being "borderline Cushing's". She has referred me to see an endocrinologist.

I am wheat/gluten intolerant, soya, British dairy etc, etc! The list is long too. Now I cannot even eat rice, so that makes 18.

My diet is Extremely restricted.

Sometimes I cannot even drink a glass of water in the morning as my reaction will be as severe as if I had eaten gluten!

None of this seems to be of any interest to the GPs. Only my excellent nurse practitioner listens!

Since having had covid everything is out of kilter - even more than before if that were possible!

I will not bother to list all my symptoms not to bore everybody but will just say that I am feeling very, very rough. As a stoic who just keeps going, I have to say that I feel I'm reaching the end of the line.

Allergic to levothyroxine; intolerant of porcine Armour, Bovine Replacement is just about all I can tolerate. I take Metavive III. I weigh 75 kilos fully clothed.

My blood test results from September are out of date, as I feel far worse than I did then and that was bad enough (Vitamin D was omitted from the test).

Diet and eating without poisoning myself is a constant challenge and a worry in itself.

My stress levels will kill me if nothing else does. Concerned for me, the nurse practitioner has organised for me to have counseling. I also need to deal with bereavement having recently lost three people who were important to me. I feel I have receded within myself and am willingly becoming reclusive. Normally communicative for the first time in my life I am finding communication difficult. I feel a certain state of 'numbness' no doubt due to feeling overwhelmed by all the issues I am battling with. I have great responsibility and I know I'm 'running down'. Just to write this has taken me a month. I really do not know myself anymore.

Apologies for the length of what I have written. I am probably rambling.

These are my results;

July;

TSH was 3.65mlI/L. [0.3 - 5.0]

T4 was 12.2 pmol/L [12 - 22.0]

T3 was 3.4 pmol/L. [12-22.0]

September;

TSH was up to 10.53

T4 was 11.1

No T3 taken

B12 ...." Unavailable due to national manufacturer supply "

Serum Ferritin level 53nglml [20.0 - 350.0]

Serum Folate level 7.0ng/ml. [3.0 - 18.0]

Electrolytes:

Serum Sodium level 141.0 nmol/L [3.5 - 146.0]

Serum Potassium level 3.7 nmol/L [3.5 - 5.5]

Serum Creatinine level 68 nmol/L [4.5 - 84.0]

Serum Bilirubin level 8 nmol/L [<22.0]

Serum alkaline Phosphatase level 64 IU/L [30.0 - 130.0]

Serum total protein level 70 g/L [60.0 - 80.0]

Serum globulin 27 g/L [18.0 - 34.0]

Serum urea level 3.8 mmol/L [2.5 - 7.8]

Serum tissue transglutaminase level 1.5 U/ml [0.1 - 3.9]; ANTI - TTG is an IGA based Assay.

White blood cell count 6.9 10* 9/l [4.0 - 11.0]

Red Blood cell count 5.08. 10* 12/l [3.8 - 5.3]

Haemoglobin concentration 151 g/l [120.0 - 150.0].... Above High reference limit

Mean Cell volume 88.7 FL [83.0 - 100.0]

Mean Cell haemoglobin concentration 335 g/l. [310.0 - 350.0]

Red Blood cell distribution width 14.5% [11.5 - 15.5]

Platelet count observation 324 10*9 [150.0 - 450.0]

Mean platelet volume 7.9 fl [8.9 - 13.1]... Below low reference limit.

Neutrophil count 3.8 10*9/L [1.5 - 8.0]

Lymphocyte count 2.4 10*9/L [1.0 - 4.0]

Monocyte count observation 0.17 10*9/L [<0.51]

Basophil count 0.07. 10*9/L [<0.2]

Plasma viscosity 1.81mPa.s [1.5 - 1.72] ... Above High reference range.

I'm not sure what the "above range" comments mean in terms of severity?

But I do understand I am undermedicated. At 75 kilos, taking Metavive III (Capsules at 40mg each). I have currently for the last 3 weeks increased to X8 tablets, making a total of 320mg. I split my dose between morning and evening. Since increasing from 240mg up to 320mg in the last three weeks, a few of my symptoms have improved slightly but I feel I have some way to go.

My TSH of 10.53 will undoubtedly have increased further since early September.

I was hoping that those who are familiar with dosing and Metavive might be able to help me figure out what new tablet strength I should order please?

I've left it very late and should order as soon as possible, but in a way it's almost as if I'm passed caring because I should have asked for help sooner, but I'm just too demoralised and just feel I am almost beyond help if that can make any sense.

Many thanks.

Poppy the Cat

[tattybogle]

Sending you 20 Hugs , cos you're worth it .

xxxxxxxxxxxxxxxxxxxx

Hopefully others will give you some more practical help in the morning, but hugs will have to do for now cos i know 'nowt much' about metavive

I'm really sorry to hear you're so down , not surprised with all that lot to deal with . Glad you managed to post .... Nurse practitioner sounds lovely and caring , so here's hoping some improvements will result from endo investigations... and counselling might be useful .. i've been through a rough patch after loosing both parents very close together and counselling was really helpful. The shock of one death following so closely on another left me feeling numb and withdrawn / reclusive for a long while . I can't imagine how much more difficult it must be to deal with grief when seriously undermedicated and struggling with eating at the same time, so i'm not surprised you feel like hiding away and giving up ... but Grief is a very long and difficult valley to walk through ,with a different view at the other end .

i'm out the other end ..and it's ok now ...everything is in it's right place and the birds sing to me in the morning .

Hang in there, poppy-the-cat

love from Tat.

x

[SlowDragon Administrator]

So sorry you’re having such a tough time emotionally and dealing with ongoing thyroid issues

Thyroid does often gets worse under stress/grief

Covid probably didn’t help either

And not helped by thyroid results suggesting you’re not yet on optimal dose

High cortisol can be BECAUSE of being hypothyroid. Adrenals try to compensate for lack of thyroid hormones and can then burn out. But initially cortisol is often high .

Have you considered doing Cortisol and DHEA test via Regenerus. Might give you better picture of what’s going on

regeneruslabs.com/products/...

cdn.shopify.com/s/files/1/0...

What vitamin supplements are you currently taking

Ferritin is on low side

Look at increasing iron rich foods in your diet if possible

Can you test vitamin D

vitamindtest.org.uk/

Sorry I have no practical advice on Metavive. But your results suggest you need to increase

[Poppy_the_cat in reply to SlowDragon]

Thank-you for your thoughtful reply and for taking the time to plough through my lengthy post.

A lot of dental issues and repeated antibiotics have not helped my general gut health either.

I have so much to deal with I feel as I am mentally shutting-down, simply to slow everything down so that I can cope step by step. Eating is a minefield. The pain in my stomach is almost continuous even for eating benign foods.

Despite the dear nurse requesting a vitamin D test, the labs took it upon themselves not to do so. I am seeing her again in early December and will request again to have vitamin D tested. Some months back I remember scoring 58 or thereabouts - low I know as previous experience shows I need to be in the 80-100 range to feel good.

I am currently trying to supplement again with; Vitamin B12 / B complex / Vitamin D / Magnesium/ Zinc. / Biotin / and I eat organic Brazil nuts occasionally when I can remember.

I must start the iron again too.

It's getting to the point where I just have to shut things out. I just want to focus on the thyroid... The possible Cushing's aspect I don't think I can deal with right now. That may sound odd but I'm just too overwhelmed.

Just to illustrate, the flu jab provoked an extremely painful and strange gum virus!! My dentist diagnosed it. The jab hurt my arm so much I practically had to carry my arm for days! That was 6 weeks ago and ever since the three previous vaccine injection sites have been excruciatingly painful in the same arm just an inch away from the flu jab site. I was diagnosed with hyperalgesia earlier this year because my capacity for pain is ridiculous...

I cannot tolerate needles in my veins anymore. I can only have blood taken with a butterfly needle so blood tests are hard for me.

When I go for blood tests I will again urge for everything to be tested at the same time... But D most certainly.

Thank-you 🙏

Poppy

[humanbean]

When I first started taking T3-only I had already struggled hugely for quite a while. I coped better with T3 only than I did with anything else. I couldn't tolerate any treatment that included any T4, so I knew I had no choice but to stick with T3 only, and kept on taking it even though it made me ill (but not so ill as it did when including any T4).

Eventually I did a Cortisol Saliva Test and discovered that my Cortisol was over the range in 3 out of 4 of the saliva results, and was about 90% through the range for the other sample. The most over the range cortisol result was the first one of the day, in percentage terms.

So I stopped taking T3 first thing in the morning to avoid any clash with my highest cortisol, and switched to taking it in the afternoon. I cut my T3 dose into 3, 4 or 5 small doses. During these timing and dosing experiments I didn't increase my daily total of T3.

If I remember correctly (this was nearly 10 years ago) I coped best with 4 tiny doses of T3. Perhaps you could try fitting in your doses of thyroid hormones, whatever they are, so that you avoid your highest cortisol times.

[Poppy_the_cat in reply to humanbean]

How very interesting.Thank-you for sharing your experience. This is something I must clearly consider.

I have found that since splitting my cuy dose between half in the morning and half at night I had started to do better... A TSH of just over 3 has been my best in a long, long time but suddenly everything has gone pear shaped... So I must try this

Thank-you 🙏

[Poppy_the_cat in reply to Poppy_the_cat]

Sorry typo.. Ai corrected. Not CUY dose, but current dose!