Endocrinology Consultation

[Smileyface]

I would like to thank everyone for all your support over the last couple of months.

I had a very unusual consultation. Not the same endo as last time. His attitude was a little off putting. He quite clearly hadn't read any of my notes.

The consultant slouches back in his chair and asks why am I here. I explain that my levo was reduced last time I saw endo and I explained that all my symptoms are back since the reduction in levo. At which point he looked at my results he said FT4 is at the top of the range and TSH is below range. He didn't see the need to up it, but what he did say was I could have as much levo as I required to be able to live my life as long as the FT4 is within range. He also added that the levo should not be reduced on the TSH result only if the FT4 is in range and that he would instruct my gp to that advice. He was happy to write a prescription there and then for the higher dose.

I didn't get the blood results the hospital did, but the ones that were done by MMH on the same day were TSH 0.01( 0.27 - 4.2) FT4 22.3 (12-22) FT3 4.9 (3.1 - 6.8)

I didn't get a chance to discuss the FT3 conversion because of the bomb shell he dropped. Everything went out of my head.

Now the next bit of the consultation went a bit sideways and is not very relevant to the thyroid but probably has similar implications. The consultant spent quite a few minutes reading my blood results as I had asked him about my Hyperparathyroidism that was what I had been referred to Endo in the first place for, but the previous Endo just wanted to reduce my levo due to my TSH.

This is the part that I don't fully understand and so I will give you the gist of what he said and if anyone has any experiences in this area I would love your input.

He said if I were in your position now I would be going back to your gp and asking for a referral to a kidney specialist. My mouth dropped.

The reason is due to my kidney function and Vit D levels, this is the cause of my Hyperparathyroidism and then quite a bit more info which I really did not follow.

It seems that its all linked to VitD.

I've looked at my kidney function blood results and my eGFR is on the lowest point of the range, everything else is in range.

My plan of action is

1, Wait for his letter to gp.

2, I've decided not to up my levo at this point as I think I need to factor in other things.

3, Although I take 1200iu a day of Vit D it's always only just within range so I need to up it. What sort of amounts of Vit D do people take? obviously 1200iu a day is not enough?

4, When my levo was reduced the brand changed from Accord to Teva, I think perhaps I should ask for my next batch of levo to be Accord to see if this makes me feel any better.

5, I need to have my B12 and iron levels checked. Start supplements if needed.

Is there anything else I should consider doing to optimise my thyroid?

[bagsypartime]

I might have got mixed up.I take Levo and have hypothyroidism- low thryroid. You have (you state in your post0 hyperthyroidism -over active thyroid.

[Smileyface in reply to bagsypartime]

Yes I have hypothyroidism as well.

[tattybogle in reply to bagsypartime]

parathyroid is totally different thing to thyroid bagsy they are 4 little glands that happen to be right next to thyroid , but other than that , nothing to do with it .

if they go wrong , you get hyperparathyroidism /or hypoparathyroidism .... they are to do with calcium regulation .

[bagsypartime in reply to tattybogle]

Thanks. didn't know that and just assumed and didn't spot or know about the bit that said -para-.Doesn't it get complicated?

I had no symptoms- maybe a fat face- before.Take 100 Levo and no issues.But I see a lot on here struggle with dosage and not getting the t3 prescribed if they need it.

Ref kidneys I think any type of pain killer if taken regularly is bad.

[Smileyface in reply to bagsypartime]

Yes it can be quite difficult to get to grips with all the info, but the hardest part is the consultants in each speciality don't talk to each other and I have 3 different consultants, this means I have to be on the ball as what is happening.

[SlowDragon Ambassador]

your results show poor conversion rate

Very common on just Levo

Presumably you are female

How old pre or post menopause

Conversion often gets worse after menopause

Vitamin D……we all vary as to how much we need

But hypo patients frequently need higher doses than ordinary people

Suggest you read about parathyroid on here

parathyroid.com/low-vitamin...

Parathyroid even more misunderstood than thyroid!

Low GFR directly linked to low Ft3

[Smileyface in reply to SlowDragon]

Hi, thanks yes I'm female aged 59, I had an hysterectomy at the age of 35 and I've been on HRT since I was 50. I wasn't aware low GFR was linked to Low FT3. Where did you find that info? When i see my gp I'm going to ask will my calcium levels go up when I up my VitD as i'm on Adcal and I don't want to overdose on calcium. What is the usual way of getting T3 is it through a private endocriniologist?

[SlowDragon Ambassador in reply to Smileyface]

If you have suspected parathyroid issue (high calcium) surely you wouldn’t be taking calcium?

Suggest you stop any calcium

Wait 6-8 weeks and then get GP to repeat Vitamin D, calcium and parathyroid testing together

This has to be done at large hospital path lab as PTH test must be processed immediately

pennmedicine.org/for-patien....

The most common cause of high calcium blood level is excess PTH released by the parathyroid glands. This excess occurs due to:

An enlargement of one or more of the parathyroid glands.

A growth on one of the glands. Most of the time, these growths are benign (not a cancer).

Calcium blood level may also be high if your body is low on fluids or water.

Other conditions can also cause hypercalcemia:

Too much vitamin D in your blood (hypervitaminosis D).

Too much calcium in your diet. This is called milk-alkali syndrome. It most often occurs when a person is taking more than 2000 milligrams of calcium bicarbonate supplements a day along with high doses of Vitamin D.

Overactive thyroid gland.

Chronic kidney disease or kidney failure.

[SlowDragon Ambassador in reply to Smileyface]

Free T4 (fT4) 22.3 pmol/L (12 - 22) 103.0%

Free T3 (fT3) 4.9 pmol/L (3.1 - 6.8) 48.6%

Shows Ft4 is a bit high

But Ft3 not even 50% through range

= poor conversion rate

Low Ft3 and lower kidney function

Discussed fairly regularly on here

Few links

pmc.ncbi.nlm.nih.gov/articl...

pmc.ncbi.nlm.nih.gov/articl...

ejcrim.com/index.php/EJCRIM...

[Smileyface in reply to SlowDragon]

Hi, thanks, no my calcium levels are low right at the bottom of the range and below range if I don't take adcal, no issues found on scans for parathyroid, that's why he saying its my kidneys plus low GFR, that are causing the problem and something to do with the conversion of VitD. I do remember about 15 years ago a very good endo told me I needed to take plenty of VitD as I had poor conversion, but my Rheumi went mad and told me I didn't need VitD and that I wasn't to take it even though it was another consultant that had prescribed it. (I quickly requested a change in Rheumi as I was obviously deficient in VitD)

A visit to my gp to check that it's safe for me to up my VitD. Looks like it's going to take some time to get things sorted. Thanks for all your help and links.

[SlowDragon Ambassador in reply to Smileyface]

So try 3000iu vitamin D and retest in 2-3 months

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.

There’s a version made that also contains vitamin K2 Mk7.

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average

Vitamin D may prevent Autoimmune disease

newscientist.com/article/23...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Recipe ideas

bbc.co.uk/food/articles/mag...

Interesting article by Dr Malcolm Kendrick on magnesium

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

[Smileyface]

Thank you, my information and the list for my gp is getting longer by the minute. I've been reading about Professor Miles Levy at the Spire Hospital Leicester as I'm considering a private consultation with him to see if he'll prescribe T3 on a private prescription. When my Lupus was bad and I couldn't get the medication(due to a disagreement with my Rheumy similar to now) I paid to see a private specialist in London it was the best thing I ever did my life improved tremendously.