My I introduce myself?: I'm a 65 year old man who... - Thyroid UK

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My I introduce myself?

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I'm a 65 year old man who's always been in good health until I had a sudden and long-lasting period of severe pain and burning throughout my body that wouldn't respond to prednisone or Oxycodone of three months. Since that time 3 years ago, I have experienced continuous, profound fatigue, prompting a series of docs to diagnose me with RA, Hashi's, and bipolar. Just signed up to share ideas about what works.

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shaws profile image
shawsAdministrator

Welcome davetrindle2

First thing to do is to get a print-out from the surgery of your blood test results (with the ranges) for thyroid hormones and post. If you need to get an up-to-date one make the appointment at the earliest and fast (if you're already taking thyroid hormones leave about 24 hours between dose and test).

Ask for a Full Thyroid Function Test (TSH, T4, T3, Free T4, Free T3 and antibodies). Also Vitamin B12, Vit D, iron, ferritin and folate. A deficiency in these also cause trouble for us. I think you've been unwell long enough and due to doctors not recognising or knowing clinical symptoms these days (they used to be trained in them) many people remain undiagnosed.

Even though you've been diagnosed with different conditions, you don't say if you are on levothyroxine or other thyroid hormones.

I realise even though you've been given hashi's as one diagnosis you might not have been prescribed as some doctors don't if your TSH is 'in range'.

davetrindle profile image
davetrindle in reply to shaws

Sorry, yes, I've been on ever-increasing and ineffectual doses of T4, but a couple of months ago begged my doc for t3, which seemed to help moderately.

shaws profile image
shawsAdministrator in reply to davetrindle

New research has shown that if on T4/T3 it should be 3 T4 to 1 T3 ( 75mcg of T4 + 25mcg of T3) or equivalent.

davetrindle profile image
davetrindle in reply to shaws

Thank you. I'll talk to my doc about that

shaws profile image
shawsAdministrator in reply to davetrindle

This is the link to the article and go to Page 80 - first para for the confirmation. Maybe run it off for your GP.

tpauk.com/images/docs/reduc...

in reply to shaws

Thank you.

Hello davetrindle2,

Sorry to hear that you feel so unwell.

I understand from a previous post that you are medicated on T4 + T3. Is this for thyroid issues or bi-polar?

I understand there is a relationship between the two and bi polar treatment might respond better if the thyroid problem is well managed. If you have ever been prescibed Lithium, there is a possibility of interference with thyroid function.

As shaws has advised, if you post recent thyroid hormone blood test results complete with ranges (numbers in brackets), members will comment.

Optimal nutrient levels are vital for thyroid med absorbtion and utilisation.

Flower007

davetrindle profile image
davetrindle in reply to

Thank you, Flower007. My meds are for hypothyroidism (non-hashi's apparently). Not much success, but recent use of 25mg DHEA has made all the difference in the world. Somehow, it supports the adrenal, as does drinking a lot of salt water. I'll stay on my thyroid meds util I see my doc, perhaps I should be reducing, as the main problem seemed to be the adrenals.

in reply to davetrindle

It is good that you don't have Hashimotos are that would just be adding another complication.

DHEA is secreted by the adrenal glands and is the precursor for progesterone, testosterone and oestrogen. Both cortisol and DHEA are involved in carb, protein and fat metabolism and heavily influence the endocrine function.

Some members conduct saliva stress tests which not only measure the levels of cortisol and DHEA but also the ratio. Too little affects organs, cells, muscles and glands so we suffer weird symptoms such as high creatinine levels, thyroid problems, muscle cramps and weakness, and too much can make men hostile. Optimal function exists in the cortisol ratio of 5 or 6 :1.

If you are supporting your adrenals with salted water you may find the following link interesting.

gotmag.org/the-adrenal-cock...

doctormyhill.co.uk/wiki/Adr...

Some say adrenal health should be optimal before replacing thyroid hormones.

Flower007

davetrindle profile image
davetrindle in reply to

So, you are saying the saliva test for cortisol should be 6x the saliva test for DHEA? Or the other way around? Thank you

davetrindle profile image
davetrindle in reply to

Thank you. I will post the bloodworm recently done

oozlumbird profile image
oozlumbird

Hi Dave. The burning sensations and fatigue sound very much like B12 deficiency, which can also cause bipolar-like neuropsychiatric symptoms, and which often goes hand in hand with other autoimmune disorders. I don't suggest you come off your bipolar meds of course, but I would get your B12 and folate checked, and don't supplement with them 'just in case' until you know what's going on as this will forever skew your results. You can still be in range with a deficiency.

Have you looked at the Pernicious Anaemia Society community here? Their website has a useful checklist of symptoms. If you notch up quite a few you should be treated for a deficiency even if your bloods are within range.

Good luck!

onecanhope profile image
onecanhope

Hello

Wow thats alot to digest and my heart goes out to you

Have you seen an endocrinologist yet? This is a great place to share,get support and keep your sanity

Eddie83 profile image
Eddie83

I find the bipolar diagnosis peculiar. More than one thyroid site (e.g. HypothyroidMom.com) has published refs to an article that says hypothyroidism is sometimes the cause behind mental health diagnoses. Therefore, I think you should get the full thyroid test suite (TSH/FT3/FT4/TPOAb/TGAb/rT3) and post the results here.

Both Hashi's and RA are autoimmune disorders. What does your diet look like, and have you had significant chemical exposures (including living in a highly-polluted area)?

davetrindle profile image
davetrindle

Thank you so much for your help and your insights. Where to start? My folate/b12 problems were resolved after getting my genome sequenced and finding that I need to take certain forms and avoid others as indicated by MTHFR and other mutations (my body was starved for b12 despite "normal" labs, apparently because the b12 circulating in the blood was not gaining entrance into the cellular receptors). That seemed to end my bipolar symptoms (I was never on lithium or other bipolar meds because I asked my shrink to hold-off while I sought more natural healing (and lithium powerfully suppresses the Thyroid). I suspect bipolar is an endocrine disease, not mental (not that anything in the body can truly be isolated from any other part--especially in the poorly understood world of the endocrine system. Any case, b12 and bipolar seems to be sorted for the time being (much to my family's relief), without resorting to life-numbing lithium. I'm going to check out the pernicious anemia suggestion, as I have been borderline anemic all my life, as my sister has been. Two of my grandchildren have to take supplemental iron pills.

I've had all the blood tests and saliva and hair analysis. My cortisol is low, and my DHEA-S is rock bottom (that's why I started supplementing DHEA at 25mg/day extended release which resulted in the disappearance of ALL my symptoms about 10 days ago, after being bed-ridden for 3 years with profound, unremitting, fatigue, and constant bloating/constipation. I've been on gluten-free, zero grain diet and no milk for a few months, and that may have contributed to my feeling better. I have my fingers crossed because I've had several short-term remissions over the years that ended as mysteriously as they started, usually within 2-3 weeks. I've had blood and hair tests for heavy metals and toxins, and my levels are quite low. I wish I had contacted this wonderful group three years ago; things may have been different. Instead (typical male?) I spent months reading thousands of scientific studies to figure every thing out for myself, as endocrinologists in the U.S. are shamefully under-trained and, therefore, attached to a very narrow Big-Pharma-induced protocol that seems to work for about half to 2/3rds of their thyroid patients, leaving several million of us to muddle around the health care system for decades being misdiagnosed, mis-treated, and quite sick. Again, thank you for your suggestions; I will check them out...warmest regards, Dave T

mstp profile image
mstp

Hi DaveT Your symptoms sound very like the ones I went down with a few years ago - prolonged burning pain all over. After that I never really recovered properly and in the following months went down hill with all sorts of other symptoms until eventually I had to give up work because I couldn't concentrate, I developed psoriasis, my hair was falling out, my memory was failing, I had no energy and was sleeping all the time etc etc.

These were all sorted out once I found this website. At the time I could only scan what was written there because my concentration levels were so low, so if something looked vaguely relevant I had to cut and paste it onto a word document and print it off to peruse at my, very slow, leisure.

I started the long haul back to health by checking my essential vitamins (all low but normal according to my GP), working out that what probably caused the initial attack was low stomach acid which meant I was not absorbing the correct vits and minerals; constipation (although I was going so I didn't really know it at the time); and, ultimately, changing my thyroid treatment to one that suited me better.

As a starter I would recommend you read up on gut health. Good luck. x

davetrindle profile image
davetrindle in reply to mstp

Thanks. I hope you are healthy again. Gut-wise I am gluten/casein free. I take probiotics, enzymes, Betaine HCL, and drink lots of water with with a little psyllium and some salt. I drink bone broth which seems healing to the gut. I make my own on the slow cooker. This regime "got things moving" again for the first time in years. Once this happened and I started supplementing DHEA, things have seemed to improve. Any other ideas for helping the gut? BTW I'm no stranger to brain fog. It once took me 7 hours to fill out a relatively simple tax form. My speech was so slow, no one could stand having a conversation with me--it wasted too much of their time--can't say that I blame them...warmly, Dave T

danceforever profile image
danceforever

Hi dave, just a quick note to say....I too had the burning pain all over, and found out in time, that it was the levothyroxine.

Some people are quite sensitive to levothyroxine, and they get this terrible burning all over.

If this is the case with you, over time it eases....but it can take months.

take care

in reply to danceforever

Thanks my "burning pain" was limited to my hands, especially the palms. Doc said it was carpal tunnel (common with hypothyroid & adrenal ?), surgery seems to have fixed it. Thank you. I wonder what the complete, legitimate list of T4 side effects includes?

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