Worrying symptoms, help appreciated

Hi All

Would be grateful of any help.........have posted on here a few times, Im gradually getting worse. Recently had some tests, since my last post, they have changed drastically. Im not on any thyroid medication, havnt been since May, as Dr P told me I was overmedicated with Levo. Temperature, metabollic rate and every symptom under the sun. Im supplementing with NAX (up to 5 a day now) and decided to start ferrous as Ferritin 47, as per advise on Stop the Thyroid Madness, preparing myself to start NDT.

I am severley breathless, extreme fatigue, whole body hurts, severe carpal tunnel in left hand/wrist, swollen scalloped tongue, bad leg swelling, confusion and very depressed......my legs feel like tonne weights, can barely walk, feel sooooo ill. Become very solitary, friends and family are concerned as `im really not myself, can barely function.

My morning temperatures are anything from 35.6 to 36.3 over the past week.

I havnt been able to see Dr P (due to his ill health) so my father paid to see an NHS Endo privately, who has dismissed me from his clinic, suggests 'ANXIETY'.

Tests as follows:

Eosinophils 0.3 (0.0 - 0.4)

HB (120 - 160) 124

HCT 0.377 (0.350 - 0.450)

Lymphocytes 1.3 (1.5 - 4.0) - this is below range, should I be concerned

MCH 30.4 (27.0 - 32.0)

MCHC 329 (300 - 358)

MCV 92.2 (80-100)

Monocytes 0.4 (0.2 - 0.8)

MPV 10.0 (6.5 - 20)

Neutrophils 3.6 (2.0 - 7.5)

PLT 186 (150 - 400)

RBC 4.09 (3.8 - 5.80)

RDW 13.3 (11.0 - 14.5)

WBC 5.6 (4.0 - 11.0)

Hormone Profile

17 - Beta Oestradiol 435

LH 1.3

Prolactin 162

Thyroid

Free T3 5.3 (3.3 - 5.3) changed from 3.9 since 12 th October

Free T4 11.5 ( 7.0 - 20.0) 14.1 12th Oct

TSH 1.20 (0.35 - 5.0) 1.1 12th Oct and over the past couple of years, hardly changes, even when I supplemented with Levo

Urea and Electrolytes

Creatine 85 (53-97)

Estimated GFR 62

Potassium 4.3 93.5 - 5.3)

Sodium 141 (133-146)

Urea 7.9 (2.5 - 7.8) above range, should I be concerned

I know its New Year and all that but if theres anyone out there that would kindly reply, I would be very grateful

Thanks x

9 Replies

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  • Hi,

    It's demoralising when some Endocrinologists dismiss us as imagining things when we are suffering with clinical symptoms. They do not know or recognise symptoms - more's the pity.

    I know Dr P has become ill again himself so he's had a very rough year.

    The fact that he told you to take NDT I'd be apt to take his advice. Also to be without any thyroid hormones since May might probably have caused you to feel much worse.

    I'll give you some links from Thyroiduk and if you are able to source your own NDT I think I would have a trial for a few months to see if it is helpful.

    Dr P was taught how to diagnosed thyroid gland dysfunctions (like all did in his training days) about the clinical symptoms and no blood tests were available then either.

    thyroiduk.org.uk/tuk/diagno...

    thyroiduk.org.uk/tuk/testin...

    Others will respond to your blood tests as I have no experience of them. Your blood tests results appeared o.k. to the Endo and he dismissed you. This is an extract from Thyroiduk.org:-

    FT3 = FREE T3

    T4 converts to T3 and is the only thyroid hormone actually used by the body's cells.

    The approx. reference range for Free T3 is 4 to 8.3

    We at Thyroid UK believe that you need to know your Free T3 level too because this will often show low if you are not converting, and high if you have blocked receptor cells. Even if you are converting, the body needs the extra T3 that a normal thyroid produces. There has been some research to show that people feel better on a mixture of Thyroxine (T4) and Triiodothyronine (T3). Effects of Thyroxine as Compared with Thyroxine plus Triiodothyronine in patients with hypothyroidism – The New England Journal of Medicine Feb.11, 99 Vol. 340.

    thyroiduk.org.uk/tuk/testin...

    "I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions"

  • Hi Shaws

    Thank you soooo much for replying, it means alot to me. I had already read those links, my Rheumy told me he wasnt worried about the results.......and my gp refuses to do any more blood tests for me. So, a bit stuck on where to go really...... I had a full private body scan recently, have kidney stones, asked my gp to rule some stuff out, like calicum levels or to look at the liver but wont test me.

    I completely trust Mr P, he told me to supplement with NAX, I have already ordered NDT (now up to 5), do you think I could start the NDT now? They are Thyroid S, I have 2 packs, really not sure what to do, can you guide me please?

    Thanks

    x

  • Csavery, TSH is low-normal, FT4 is low-normal, and FT3 is top of range. Results appear to be euthyroid. Taking NDT will raise FT4 but will also send FT3 over range.

    Your lymphocytes and urea are mildly abnormal and as your other results are within range are unlikely to be significant.

    Lymphocytes low labtestsonline.org.uk/under...

    Urea high labtestsonline.org.uk/under...

    _________________________________________________________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • Hi Clutter

    Thank you soooo much for replying, it means alot to me. I had already read those links, my Rheumy told me he wasnt worried about the results.......and my gp refuses to do any more blood tests for me. So, a bit stuck on where to go really...... I had a full private body scan recently, have kidney stones, asked my gp to rule some stuff out, like calicum levels or to look at the liver but wont test me.

    I completely trust Mr P, he told me to supplement with NAX, I have already ordered NDT (now up to 5), do you think I could start the NDT now? They are Thyroid S, I have 2 packs, really not sure what to do, can you guide me please?

    Thanks

    x

  • Csavery, I don't think you need thyroid replacement as FT3 is top of range. If you take NDT I think you're likely to feel overmedicated.

  • Sorry to be a numpty, Im confused with your reply Clutter as differs so much from what Shaws is advicing......Ive read the links Shaws posted about blocked T3 receptors.......I have every hypothyroid symptom on the Thyroid Uk symptom list, low temperature, slow metabolic rate and Dr P all confirm possible T3 conversion, Im thinking I may also have B12 deficiency - as have many neurological symptoms as well, this may be adding to my suffering. I've also researched that although my antibodys have come back negative for Hashis, if its so advanced, the blood tests could still be incorrect and that I may well still have Hashis? Can anyone advice me on this?

    Thank you and Happy New Year to you!

  • So sorry you're feeling poorly.

    Has Vit b12 and Vit D been tested? Like Clutter, I'm thinking this doesn't look like a thyroid problem on the face of it - but B12 deficiency and/or Vit D deficiency is a possibility.

  • Docs who dismiss us as "anxious" etc. deserve to be shot. Do you have to wait for your doc? No one to replace him? And I thought USA doctor care sucked. Being "overmedicated" doesn't mean you don't need meds, though your bloods seem fine. Many variables. Sometimes you come off meds & it takes quite a while for your body to learn to work on its own again. You don't say your age, weight, or BP, etc. I'm not a doc, but I've experience similar. Swollen tongue could be allergy or food intolerance new meds?). Lymphocytes could be autoimmune (hashimotos?), figting infection, etc. Urea & swelling (edema, oedama) could be liver (don't fret, liver can be healed). Edema in your legs could be edema in your body pressing on your lungs, or allergy/intolerance. I don't know NAX or NDT. Iron: Consider getting your blood checked, anemia & iron overload have similar symptoms, & iron overload can cause irreversible damage. Google your symptoms/results & see what resonates. In the meantime, keep a food diary with everything you eat, how much you drink & urinate. Drink only water (not tap), eat simple, easy to digest foods & not too many different types at a time so you can notice better if you have a reaction. Try adding some liver healing teas like milk thistle, dandelion, peppermint, etc. (make sure you dn't have a reaction).

    My body stopped functioning after withdrawing from many pharma drugs in a relatively short time period. First thing the food journal taught me was I could no longer eat animal protein, then that raw vegies constipated me. It took over a month on steamed vegies for the swelling of my eyes to go down (now I have major loose skin. Sigh). All I eat now is steamed vegies, but most of my organs are so damaged I can't tolerate anything else. Trial & error. Google serrapeptase, I've found it helpful. And INSIST they test your calcium level: I just had my come back high, and before they can recommend "waiting" or calcium channel blockers, etc, I've already learned that the only cure is surgery (20 minutes, tumors NOT cancer) & have filled new patient forms at a hospital three days drive away from me. High calcium (parathyroid can kill you after destroying your life). I just made a post about it, but here's the link: parathyroid.com. The bad news is you might have to change your diet. The good news is that you can heal. If it's your parathyroids (high calcium), read everything on that site & move heaven & earth to find a decent surgeon. (calcium) kidney stones are a sign of parathyroid problems, calcium is pulled out of our bones & deposited in our organs/joints, becoming stones, calcifying us, etc. Swelling could also be from stones. Get your calcium level checked. I don't know what's wrong with so many doctors, it's like every sadist & psycopath wants to be a doctor these days. Read that site, print some stuff out, bring it to a doc. Don't wait too long (it won't kill you that quicky, but from experience there will be a wait for surgery & you will be miserable until then).

  • And if your D levels are low, it' also a sign of hyperparathyroidism - tumor (s) (NOT cancer) on parathyroids. DO NOT let them dismiss it & simply give you D supplement. Read everything on the site parathyroid.com, doing that is WRONG!!! These stupid doctors just keep us in the system forcing their poisons on us while ignoring our underlying problems which are ruining our lives & slowly killing us. Go to the site & read. Learn. Hand the docs printouts. Sell your furniture & get the surgery if necessary (AFTER reading what to watch out for in surgeons from the link).

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