Finally Got Iron and Vit D Tested but Endo Backtracking. Opinions?

I finally got the endo to do a vitamin d test and my GP did a full iron panel but not folate. Baby steps!

Back in November, the endo was quite ready to give me some type of thyroid meds (he never said what but I suspect levo). He thought my pituitary, which has an adenoma, is causing me to convert ineffectively. At the time he changed the meds I'm on to shrink the adenoma and he didn't want to give me new thyroid and pituitary meds at the same time. He said if I felt better he wouldn't know which meds were working.

Talked to endo again last week after a bunch of new blood tests. The adenoma doesn't appear to be shrinking based on my hormone levels so he's taken me off the pills altogether and ordered a new MRI to see if the adenoma has grown. The MRI is at the end of May.

He has also decided to wait again on the thyroid meds because he thinks my thyroid levels are fine now. He said let's wait to see what the hematologist says, not because he believes iron helps thyroid, he poo-pood that, but because my symptoms might be all anemia and not thyroid. My iron is low but my hemoglobin is fine so I don't think I have anemia. I've been feeling like this since October 2015 and can't get anywhere. Hematologist appointment isn't until May either and the hematologist sent a requisition to my GP for some preliminary tests for celiac and H pylori because of my iron. I've been supplementing ferrous fumerate 2x daily sinxe December 2015 and have only had ferritin go up to 16, thus I may have an absorption problem.

Latest results, reference range in brackets:

WBC 11.5 (4-10)

RBC 4.56 (3.5-5)

Hemoglobin 133 (115-155)

Hematocrit .39 (.35-.45)

MCV 86 (82-98)

MCH 29.2 (27.4-33.5)

MCHC 339 (300-370)

RDW 15.1 (11.5-14.5)

Platelets 278 (150-400)

TSH .88 (.32-5.04)

FT3 3.52 (3-5.9)

FT4 12.8 (10.6-19.7)

Ferritin 16 (15-257)

Iron 8.1 (10.6-33.8)

Iron Binding Capacity 58 (24-61)

Iron Saturation 0.12 (0.13-.50)

Vitamin D 26 (75-150) although report says not deficient until under 25 and that 26-74 is only insufficient.

B12 298 (153-655)

Endo doesn't want to talk to me until summer unless there's an issue on my MRI. He says let's wait until hematologist gives me iron infusions (he's making an assumption that's what will happen) and see if that solves my problems. Do you think that's the right call or should I call back and try again? I know iron levels help with thyroid meds but I'm left hanging again until July or later by the Endo when I could be on Levo for the two months I have to wait for the hematologist.

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16 Replies

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  • Dr Barry Durant Peatfield days you need a vitamin D of 80 to feel well yours is in your boots. If you can tolerate it you can. Take 8000i.u a day to get yourself back up to human

  • Iron, Feretin, B12 and vitamin D are all too low!

    B12 needs to be above 500

    Studies show under can cause neurological symptoms.

    NHS is stretched and underfunded so they don't like to offer treatment unless absolutely have to.

    Vitamin D definitely over 60

    One of the main causes of high cortisol is a benign tumour on the pituitary so have you had your adrenals tested? This could be causing lots of symptoms and imbalances in your hypothalamic pituitary axis.

    Cortisol inhibits the immune system can interfere with blood pressure, clotting, cholesterol and causes visceral fat.

    Hope you get somewhere with this, I have high cortisol but can't get dr to listen at all or do anything to help.

  • My cortisol was fine. I did a morning cortisol test in October and it was 270 (125-436). I also did a suppression test and it was suppressed to 22 which was in range for suppression I was told.

    I've been told my B12 is "just fine"!

  • B12 needs to be 800-1000. The Japanese supplement from 500.

  • Dear MrsBeasley - good advice already.

    If you feel comfortable going it alone you might want to look further into how the adenoma affects hormone levels. I have one, and was told no action needed because prolactin levels were normal. Private tests showed very low ACTH and low for all hormones further down the line. Whilst my cortisol was probably high for a while the years I spent ignoring the fatigue and other warning signs resulted in very low cortisol, secondary Addison's.

    Secondary Hypothyroidism as well (I was diagnosed with a TSH of only 3.5).

    Maybe a saliva test to get a good idea of what your adrenals are up to?

    May I ask about the medication you were offered to shrink the tumour? I have been offered surgery, but the endocrine surgeon admitted that it was an interesting procedure (teaching hospital) but unlikely to offer symptom relief after so many years of low-in-everything.

  • I had surgery. They went in behind my top lip and through sinus cavity. To patch my sinus they took flesh from my right thigh which is the only sign I've had surgery. They plugged my nostrills for a few days just incase of leakage .

  • Do you feel the surgery has improved things for you? Was the pituitary left intact? Do you think your ongoing/increasing medical conditions are related to this?

    Sorry so many questions, I would be grateful if you shared your experience.

    milupa

  • I think all my problems were due to my pituitary. it is damaged and that is why i now take 4 different medicines as the pituitary basically doesnt tell the body to produce them. I dont believe the surgery damaged my pituatary as i had all the symptons before surgery. My panick attacks stopped after surgery. They did take my desmopressin away after surgery and that was torture. They measured my fluid intake and output and realised i needed those tablets so gave them back. With the human growth hormone apparantly that is due to damage pituitary but its taken them 12 years to check it. Ive only been taking it for 10 weeks so not had any checks on levels yet. My next appointment is not untill november (as long as its not cancelled). With the nhs you see whoever is in on the day it doesnt matter who is named on your appointment but im impressed with my last 2 endos both professors. I used to take testosterone too even though its not licenced for women in britain but my levels got too high so that was taken away. I did lose some weight with this as my metabolism increased.

    By the way i am now 57 and work full time in a fairly phisical job. All i want now is to get a good nights sleep.

  • lizbarlow - apologies for late reply, something went wrong with notifications.

    Thank you for your answer! I am happy for you that you are well enough to be back at work and more or less fully functioning. I hope the medications' side effects are tolerable?

    I have so many health building sites that I let the adenoma topic slide for a while. My MRT is due soon, I react badly to the contrast medium so there will be discussions... and I will point out my low ACTH, HGH etc. Thank you for putting this back on my to-do list.

    I (52) feel awful on oestrogen supplementation but testosterone cream is wonderful. My blood levels are over range but my doc thinks it is fine to continue as long as I don't show male pattern hairgrowth or acne.

    I hope you continue to feel well and manage to sort out the sleep issue, it took me over a year to sort that one out!

  • I actually dont know anyone that sleeps well so maybe my sleep patterns are normal or as normal as they are going to be. As for back to work i never had time off due to my conditions, I have only been off for the op and recovery time thankfully.

    What is mrt. I have to say i have been someone who has just done as the doctor said. Maybe ive been lucky because the vision thing got me straight to the endo albeit im sure they could have lòoked at everything at once instead of one thing at a time. Pituitary and ghd go hand in hand so why take 12 years to address the issue! They took me off testosterone because my levels were the same as a male my age!!.

    Why do you take oestrogen ive never had this or if i have it was only for 3 months whilst my bone density was checked but found to good so the benefits were out weighed by the negatives and i didnt so gp stopped it. This was before my hysterectomy.

    I hope you get it sorted and feel better soon. Whether you feel in peak condition or not i dont know because I've forgotten what that is but any improvement is better than none at all. Keep me posted on your journey.x

  • lizbarlow - sorry, MRT is the German for MRI.

    I was given two different types of estrogen for menopausal symptoms but each one made things worse immediately. All my hormones are low/very low. DHEA, Pregnenolone - all low and all useless in supplementation. My doc aims for pre-perimenopausal levels for all hormones but thinks that bodies that have adjusted to low levels for decades cannot cope with appropriate amounts.

    I am glad you got seen when your vision went awry, but I also want to know why it has taken so long in our (and so many other) cases.. Low HGH must have felt awful.

    I deteriorated badly under NHS care, started self-diagnosing and self-treating seven years ago. The German health system allows GPs to write insurance funded as well as private prescriptions. So I can self-treat with GP guidance.

    Peak condition? No idea if I've ever been there but sleeping through the night and not being on the brink of collapsing all the time is good for me.

    I wish you 'good sleep'.

  • My cortisol was fine. I did a morning cortisol test in October and it was 270 (125-436). I also did a suppression test and it was suppressed to 22 which was in range for suppression I was told.

    On the flip side, all my levels came back high on a 24 urine test indicating I had a pheochromacytoma on my adrenals but a second test came back in normal range.

    The first Endo diagnosed me with a prolactinoma but my levels were always only in the 30s and 40s on a range of 4-28. He put me on Norprolac. He refused to check anything else and my levels never dropped on the meds so I got a second opinion. He tried me on cabergoline and still my prolactin levels haven't wavered, so he's decided I have a non secreting adenoma and the prolactin is incidental. He said a true prolactinoma would have levels in the 100s.

    I was told the surgery is only done if the adenoma is over 1 cm and affects your vision. Mine was under 1 cm when I was diagnosed last April. He's doing a follow up MRI in May and says he'll just keep watching it with annual MRIs.

  • Sorry for the late reply, Mrs Beasley, notifications were on the blink.

    Regarding the surgery I also have an agreement with the neurosurgery department to come in the moment I get vision problems. Yearly MRIs will be problematic because I developed an adverse reaction to the contrast medium.

    Sorry to be controversial but a morning cortisol level that is only halfway through the range, after the stress involved of getting to the surgery and having blood taken etc is not optimal. If you feel exhausted, have difficulties sleeping etc maybe consider a saliva test to get a more reliable result?!

    I hope your adenoma stays small and inactive!

  • I had my adenoma removed 12 years agobut that wasn't discovered untill i lost my periferal vision in both eyes. I had already been diagnosed with an underactive thyroid when i could hardly stand because of pain in my feet. I was also drinking 2 pints of water every 2 hours all day every day but was only ever tested for diabetes and as i wasn't diabetic was told it was a habit i had gotten into. My periods were few and far between but when thy came they came with a vengeance. i have now had a hysterectomy due to a prolapse. The gp said who wants to bleed every month anyway. My weight dropped from 11 stone after my second baby to 8 stone then went back up and i was 13 stone by the time my endenoma was discovered. The thirst issue was finally diagnosed by by an endo registrar 5 months after i lost my p.vision on his first day at clinic whist awaiting my op. i needed tamazepan each night due to panake attacks that disapeared once I'd had my op I now take desmopresson twice a day levo 125mg each morning vit 8000 twice a day since last may. I now also take 0.2 human growth hormone via injection every night. I also have astma diagnosed 12months ago. So basically 30 years down the road and im still getting new meds added. My tsh is now 0.2 and gp wants to reduce levo but when they do the endo puts it back up and says they dont understand my condition. I now weigh 10st 12 and have lost a stone not by dieting over the last 18months. Hopefully the hgh.will get rid of my abdominal fat and ill be somewhere near where i used to be. I am tested regularly for adrenal issues but thats fine for now.

    I hope you get your diagnosis soon and you can get on the road to recovery.

    I am in the uk. its taken a long time.

  • Now foods instant energy B12 on Amazon is really good, is b complex too. Powder so easily absorbed.

    Just supplement yourself!

  • We just watched a series on autoimmune thyroid by Izabella Wentz, there were many interviews and personal experiences. One woman had trouble normalizing ferritin and iron but once she began taking manganese it improved. I know this is anecdotal but perhaps an option.

    If you decide to take B12 be sure to take methylcobalamin and methylfolate since they work together.

    I wonder why he thinks the pituitary has to do with conversion. It needs a good supply of T3 though. The NAH thyroid website explains a lot and they use technical language that perhaps your doctor would be more convinced.

    Iron deficiency

    Iron deficiency is shown to significantly reduce T4 to T3 conversion, increase reverse T3 levels, and block the thermogenic (metabolism boosting) properties of thyroid hormone (238-242). Thus, iron deficiency, as indicated by an iron saturation below 25 or a ferritin below 70, will result in diminished intracellular T3 levels. Additionally, T4 should not be considered adequate thyroid replacement if iron deficiency is present (238,239,241,242).

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