Update to previous posts.: Hi this is really just... - Thyroid UK

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Update to previous posts.

Alfiecat22 profile image
10 Replies

Hi this is really just a vent

Hi, i haven't posted on her for about a year while i waited to get an appointment with a different consultant.

I was advised to look into my PTH by a more knowledgeable person on here than i am.

Today was my second appointment to discuss results of PTH and Thyroid. Didn't see consultant i saw last time just a young man instead registrar i think, who liaised with consultant. Brief update to recap, 2016 loads of thyroid symptoms that still persist, brain fog is even worse than it was feel like i have dementia, shout at myself on a regular basis, tired to the point i no longer work.

These are some of my results from the last 2 years:

TSH 0.38 0.05 0.13 0.1 0.05 range ( 0.35-5.5) before these, values of 0.04 0.06

PTH 8.5 15.9 18.3 13.2 13.2 range (1.95-8.49)

FT4 16 14 15 15 14 range (9-23)

FT3 5.5 5.3 5.6 5.8 range (3.5-6.5)

Serum Thyroglobulin Level 113.7 range (14.0-29.2)

Thyroid Peroxidase Antibodies 62 range (0-59) 11/04/2022 (also positive in 2017 no values)

with a note to say very high likely hood of developing auto immune thyroid disease and test every 3 months that was back in April never been tested since, this was also dismissed by registrar and consultant. The consultant was on the list from Thyroid uk. (already have IGa Nephropathy auto immune disease of kidney now have transplant which has no problems at the moment but there is a risk IGa could cause damage to the new kidney)

TRAB less than 1 range (1-1.8)

i have a number of Thyroid nodules, but they couldn't see parathyroid glands on ultra sound but not going to look again at parathyroid, but will look at nodules again.

Not going to look at pituitary gland as scanned in 2017 and nothing showed up then, but didn't think it was that suppressing the TSH.

Vitamins and minerals all on low range, i have held off taking supplements to try to get a true reading, stopped taking Vit D after reading the article about PTH that was recommended on here.

Registrar disagreed with the PTH article said i had high PTH due to low vit D and just to start taking them. ALSO TOLD ME TO GET A PET FOR COMPANY AS THAT MIGHT HELP ME. I have been told my symptoms are hypothyroidism but my result lean towards Hyperthyroidism but they are not going to try anything at all and to just get on with it.

My tiredness is nothing to do with my transplant started years before that, have had problems for many years, the brain fog is now really bad i feel i don't have a proper life anymore, thyroid problems are in the family. i used to work 9hr shifts, then go out cycling for a couple of hours loads of energy. Not now.

I am no further forward than i was a couple of years ago, i feel absolutely lousy, and after they have looked at my Thyroid nodules i will then look into raising all my vitamins and minerals after speaking with Renal consultant.

Just wanted to vent a bit, thanks for listening

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Alfiecat22
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10 Replies
bantam12 profile image
bantam12

Your PTH may be high due to low Vit D but you need calcium and phosphate tested at the same time as PTH to find out, if calcium is also high then it’s likely hyperparathyroidism.

Alfiecat22 profile image
Alfiecat22 in reply to bantam12

hi Thanks for your comment, calcium is always on the high side of normal, phosphates are towards lower side of normal thanks

Sparklingsunshine profile image
Sparklingsunshine in reply to Alfiecat22

My PTH was elevated above range in August. But my vitamin D is pretty good at 89. Sometimes low calcium levels can cause the parathyroid to demand more calcium from the bones if it detects low blood calcium levels. I'm due a repeat blood test but am waiting till after Xmas now.

I have to say getting a pet is a new one, in the long and ever expanding list of ridiculous and insulting comments doctors make to patients. We're back to hysterical woman with too much time on her hands territory. They just dont have a clue.

Alfiecat22 profile image
Alfiecat22 in reply to Sparklingsunshine

yes couldn't believe it, listened to nothing I said, wished I hadn't bothered, thanks for your reply

HowNowWhatNow profile image
HowNowWhatNow in reply to Alfiecat22

I thought you meant a PET scan of some kind - and now I they mean a stick insect or a gerbil.

SlowDragon profile image
SlowDragonAdministrator

What are your most recent folate, B12 and iron and ferritin levels?

you could/should work on improving these ….even if you don’t supplement vitamin D….yet

What are most recent folate, B12, iron and ferritin results and ranges

Parathyroid

How low was vitamin D.

Have you had vitamin D, PTH and calcium tested together

Please add results and ranges if you have them

GP (or ideally the so called specialist) should have tested vitamin D, calcium, phosphate and parathyroid levels TOGETHER

This needs to be done at a large phlebotomy department…..because PTH must be processed within minutes of blood drawn

Jazzw profile image
Jazzw

I’m sorry Alfiecat22, been there a few times.

I have a feeling you didn’t see a registrar (they’d be more of an “expert”), you just saw what we used to call a senior health officer (called something different these days I think but the gist is that they’re not long out of training and do rotations around various specialities). Does that make it forgivable that they suggested you got a pet? Nope. But maybe more understandable. It’s on a par with being called “my lovely” or “darling” by a nurse you’ve only just met who seems to think that using endearments is an instant method of building rapport (I mention this one cos my 80 year old father absolutely hates it—he finds it utterly patronising).

Anyway, I digress…

As always, the real experts on having a condition tend to be those living with the condition. One day that fact might get a bit more widespread recognition—but not yet, I’m afraid. Sending a big hug (if that isn’t overly familiar of me ;-) ).

meme profile image
meme

you need vitamin D, PTH and calcium taken from the same blood draw. Then the relationship between the PTH and calcium will be seen. That is how parathyroid abnormalities are diagnosed, as ultrasound rarely sees any PTH abnormalities.

serenfach profile image
serenfach

I cannot comment on the PTH stuff, but I can empathise with you on the dismissive medical professional. Most of us have been there. We wait and wait and build up our hopes of a positive outcome, a way forward, a chance of a life, and within minutes, we know we are not getting the help we need. Pat the poor woman on the head and tell her to stroke a cat! Our hopes dashed!

This forum has helped me see a way forward, given me hope, and through NDT which works for me, a life. I do hope with the advice above, and a hug, things get better for you soon.

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