Do you think I should get more tests?!

[Spirit08]

Hi,
I'm so sorry if this is posted in the wrong place but I'm really desperate for some advice and feel like the drs have pretty much given up!! My symptoms started about 9 months ago and seem to have got progressively worse in this time. I feel nauseous a lot, am ridiculously tired (but only able to get broken sleep), have itchy palms of hands/feet (and sometimes head!!), dry mouth/constantly thirsty, constantly hot, increased urination and bowel movements (sometimes loose but not always) and high heart rate (had abnormal ECG which showed inverted t waves??). So...I was wondering about thyroid problems particularly as there is a high incidence of autoimmune conditions on both sides of my family (coeliac, graves, pernicious anaemia). Can anyone make any sense of these results...
High/high normal cortisol, MCH, testosterone
Low/low normal white blood cells count (particularly monocytes), platelets, ferritin and folate levels
TSH was 1.25 in December and 2.25 this week...is this normal? I know the range is ok and wondered if it usual for it to fluctuate.
Everything else seems pretty much bang on normal ranges (e.g. B12) haven't had any other thyroid checks done because of normal TSH. They also identified that I have high IgA and gastric parietal cell antibodies (but not intrinsic factor).
Any advice REALLY gratefully received :)

[Red_Star]

I've read autoimmune gastritis is more common with Hashimoto's thyroiditis, Addison's disease, and type 1 diabetes. Some info below on common symptoms (you don't have to have every symptom to have the disease however) and the list of lab tests to help with diagnosis.  When it comes to vitamin and minerals, you want to be in the higher end for optimal health. I'm still digging away with my health issues. :)

From the American Association of Clinical Endocrinologists (AACE) - Hashimoto's thyroiditis - Information for patients:

"Although many of the symptoms associated with thyroid hormone deficiency occur commonly in patients without thyroid disease, patients
with Hashimoto’s thyroiditis who develop hypothyroid ism are more likely to experience the following:

Fatigue
Drowsiness
Forgetfulness
Difficulty with learning
Dry, brittle hair and nails
Dry, itchy skin
Puffy face
Constipation
Sore muscles
Weight gain  
Heavy menstrual flow
Increased frequency of miscarriages
Increased sensitivity to many medications"

Testing for Hashimoto's thyroiditis: TSH, free T3, free T4, thyroid peroxidase antibody (TPOAb), thyroglobulin antibody (TgAb).

***

From Medline Plus - Type 1 Diabetes

"These symptoms may be the first signs of type 1 diabetes, or may occur when the blood sugar is high:

Being very thirsty
Feeling hungry
Feeling tired or fatigued
Having blurry eyesight
Losing the feeling or feeling tingling in your feet
Losing weight without trying
Urinating more often

For other people, these warning symptoms may be the first signs of type 1 diabetes, or they may happen when the blood sugar is very high (see: diabetic ketoacidosis):

Deep, rapid breathing
Dry skin and mouth
Flushed face
Fruity breath odor
Nausea or vomiting, inability to keep down fluids
Stomach pain"

Diabetes is diagnosed with the following blood tests: fasting blood glucose level, random (nonfasting) blood glucose level, oral glucose tolerance test, haemoglobin A1c test.

***

Mayo Clinic - Addison's Disease:

"Addison's disease symptoms usually develop slowly, often over several months, and may include:

Muscle weakness and fatigue
Weight loss and decreased appetite
Darkening of your skin (hyperpigmentation)
Low blood pressure, even fainting
Salt craving
Low blood sugar (hypoglycemia)
Nausea, diarrhea or vomiting
Muscle or joint pains
Irritability
Depression"

Tests for Addison's Disease include: cortisol, ACTH, ACTH stimulation test, aldosterone, electrolytes (sodium, potassium, chloride and bicarbonate), urea and creatinine (monitor kidney function), glucose levels (may be very low during an Addisonian crisis).

[Spirit08]

Thanks for these...I've got an echo scan on my heart tomorrow so I'm hoping that will rule out any heart problems...I really think it is a symptom of whatever else is going on rather than anything more sinister (I hope anyway!!!). I would say my thirst is more a really dry mouth which makes me want to drink more rather than excessive thirst...does that make sense? I've got an appt with my GP on tues and I guess I just want to make sure I ask her about any other tests that may be worth doing...I'm going to ask about free T3 and T4 just to get this ruled out properly...is there anything else you think is worth asking?? She has looked at previous results and as long as they're in normal range she completely dismisses them e.g. Folate was 30 (12-300) and ferritin 11 (10-30) and she said this was fine...even though I could have ten times as much and still be the same??!! Just doesn't seem to make sense! It sounds like this is nothing new to you though :(
I am slightly sceptical of drs...it took them 6 years to diagnose my dad with Coeliac...he ended up about 7 stone ( and over 6 foot tall) and in hospital before they found out what it was...that was about 12 years ago but still!!!
I hope you've managed to get to the bottom of your health problems x

[Red_Star]

Just to add, excessive thirst isn't a symptom of B12 malabsorption. I really was rather tired indeed to slip that into the symptoms list lol!  Well i'm not aware of this as a symptom at any rate. I know it's a possible side effect of B12 injections though. I personally had excessive thirst as one of my many symptoms of severe magnesium deficiency.  I found a couple of websites on causes of high IgA and inverted T waves.

From WebMD - immunoglobulins:

"IgA. High levels of IgA may mean monoclonal gammopathy of unknown significance (MGUS) or multiple myeloma is present. Levels of IgA also get higher in some autoimmune diseases, such as rheumatoid arthritis and systemic lupus erythematosus (SLE), and in liver diseases, such as cirrhosis and long-term (chronic) hepatitis."

From medical books vivek:

"ECG: T wave inversion causes INVERT:

Ischemia

Normality [esp. young, black]

Ventricular hypertrophy

Ectopic foci [eg calcified plaques]

RBBB, LBBB [Right or left bundle branch block]

Treatments [digoxin]"

[Red_Star]

No problem. :) You may have health issues going on of course. I had plenty! But if you correct the B12 issues you can tackle any symptoms remaining. Now if only i could figure out how to get rid of the flies :P

[Spirit08]

It's weird how it all fits...am going shopping tomorrow!! I guess there is one advantage with the mozzies not liking you now lol!! Thanks again for your help :)

[Red_Star]

I use a brand called bioceuticals. I think it's only Australian brand though. B12 is one of the vitamins for a healthy immune system too! Due to B12 malabsorption, i had yearly chest infections for decades (i'm not sure if it was bronchitis or pneumonia as they list the same symptoms), poor wound healing, and large massive white lumps in reaction to mosquito bites. Mosquitos don't like me as much now lol!

The only thing i can think of supplement wise to mask a condition is folate as this can mask a vitamin B12 deficiency so it's always recommended to take folate with B12.

[Spirit08]

Lol glad its not just me:) thank you so much for your help...I have kind of avoided supplements until now as I didn't want them to 'mask' anything in my tests but I am now going to be more proactive about it! Can I just ask what brand of B12 you use? Going to do some research about it in the uk and would be good to know what's worked for you.

Interesting what you said about age when symptoms began...I picked up every infection gong as a child/teen and then have had episodes of feeling like this since I was 18...this is by far the longest/worse though...maybe it's because I've turned 30!!!:)

[Red_Star]

Wow i am not on all cylinders this morning (or at any time) lol but i meant co factors for iron are vitamin C, vitamin B12, folate and zinc. :P

[Red_Star]

I might rephrase some of that info about nerve damage as I had permanent nerve damage that showed up as a teenager (I have had symptoms since i was a small child) but i didn't diagnose my condition until age 35.

Without adequate vitamin B12, folate becomes trapped in an unusable form. The co factors for iron are vitamin C, vitamin B12, folate and iron. Co factors help with absorption. When i corrected my B12, my folate rose as well without any folate supplements. You can take all three supplements however.  

Iron supplements may cause nausea (maybe you won't know since you suffer from nausea lol).  I never have nausea from iron tablets however. I take a brand called Swisse and it's chelated iron for better absorption. I've never taken folate supplements but i get plenty of folate and some of the other B vitamins from vegemite. LOL.

[Spirit08]

Thanks so much...I'll see how to get hold of it in the UK! Given the low folate and ferritin do you think it's worth supplementing these too? Is this something you do with pa? And if so what do you use? Thanks again :)

[Red_Star]

I wouldn't rely on B12 serum with positive paretial cell antibodies. That is the recipe for how to suffer for years and years until you are "officially" deficient. In Japan and Europe, B12 deficiency is under 500 or 550pg/mL just to add.  

I had to order my sublingual spray into my local pharmacy. I live in Australia just to add.  I like the spray as it's quick and pain free.  I currently take 2000mcg daily which is four sprays under the tongue. Tastes nice too and the colour of B12 is red..my favourite colour. :)

[Spirit08]

Thanks...I was thinking that my symptoms did fit pernicious anaemia but serum B12 level was most recently 636 (200-900) so I didn't think this could be causing the symptoms...is this test accurate? I am willing to try anything so if you think the sublingual spray may help with this I'll give it a go! Is it readily available at pharmacies?
Thank you :)

[Red_Star]

Your labs showing B12 malabsorption: gastric paretial cell antibodies, high cortisol, high MCH, low ferritin, low folate, low white blood cells including low monocytes, low platelets. Gastric parietal cell antibody is associated with over 90% of patients with autoimmune gastritis.

Your symptoms that are listed under malabsorption of B12: fatigue, itchy skin, excessive thirst, high heart rate, nausea, frequent urination, loose, frequent bowel movements (can be alternating constipation and diarrhea), low grade fevers.

I would personally recommend sublingual B12 spray. I use this daily for my autoimmune pernicious anaemia. Your B12 issues are not low enough for dementia and nerve damage yet but over time they will be if malabsorption is not corrected.

[Spirit08]

I was with the endo or a maximum of about 15 minutes!! He did not do any further tests for thyroid (at the time I'd had the TSH of 1.25 about 2 months previously) so he said that was not the case. He did the Hb1Ac and said this ruled out diabetes (he only did this because I asked...constantly feel like I have low blood sugar and need to eat...I know diabetes is high blood sugar though). The only other things he did are 24hr urine cortisol...result was 296mmol (sorry no ref range again but told this was normal) and dexamethasone suppresion which came back as 39 (170-540) bt apparently this low is normal for the suppresion test)...he did these as my 9am cortisol was high a number of times (latest one was 605 for a range of 170-540)...so all cortisol things ruled out apparently!! He also did some hormone tests as my periods have been really light and short (completely abnormal for me) with the following results:
LH 16.9 (2.4-12.6)
Testosterone 1.6 (0-1.8)
SHBG 110 (20-130)
FAI 1.1 (0-4.5)
FSH 4.6 (3.5-12.5)
Thank you again :)

[blsdnsvvd]

Yes, having your FT3 and FT4 levels checked will be helpful as well. Even being in range, does not mean that there is not a problem.  I am curious to know the endo's suggestions?? I am also hoping that someone who is more experienced will chime in on this post as well.

[Spirit08]

Thank you so much for your response. I do not have the range or the results at home so I'll have to get them on Monday. I have looked at the symptoms and seem to have more hyperthyroid symptoms than hypo which doesn't correlate with the result at all...maybe I'm barking up totally the wrong tree. I have seen an endocrinogist and he ruled out diabetes (Hb1Ac was 28 but again don't have range ...sorry). Do you think it's worth asking for T3 and T4 levels to be checked or not?
Thanks again :)

[blsdnsvvd]

Please post the range for the TSH results. Most docs will not run tests other than TSH, if that number is within normal range (although normal doesn't always mean "normal"). I suggest that you talk to your general practioner about all of your symptoms and allow her/him to refer to the specialists in those areas. Have you been screened for diabetes?? Do you have any hypothyroid symptoms?? You can google "hypothyroid symptoms" to see a list of symptoms. Your TSH level can fluctuate especially if there is a thyroid issue that is not treated.