Update on 30 year old neice who has high tsh re... - Thyroid UK

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Update on 30 year old neice who has high tsh results twice now , 2nd results worse . But 25 mg thyroxine starting dose ! Low iron too

poppppy profile image
17 Replies

Update if you don't mind . Don't worry if you are too busy . I am going to go for an appointment with my neice . She is being all independent so has not allowed me. But now she will as she is having worse symptoms. She couldn't feel her legs properly the other day . Pains in chest . But is not central chest pain etc . So does not sound cardiac . More like anxiety but who knows for sure . She will not attend "a and e " despite my advice . Doctor told her they won't up the dose when she went again . Prescribed her migraine tablets for anxiety!

he did give her her tsh result on my request that she asks

free t4 Tsh 10. 49

Free t4 11.6

Bear in mind this was tested about 6 months ago and tsh was high then (but she did not tell me because they said she does not need treatment.) .so they know is getting worse .

These are worse than my first results and I was put on 25 but after the lovely pharmacist advised me it was too low a starting dose for me . . I went back and argued for a higher starting dose. And was upped to 50 or 75. I cant remember now. This was after they accused me of being depressed . And two doctors stood over me whilst i filled in a questionnaire. Even though I told them i am happy. And i always declare my own depressive episodes in my life time. Evident in my notes . By the way I requested an apology for this later on another day . And I got it face to face from the doctor. This was not for me but for her to think on when she treats another newly diagnosed hypothyroid patient .

I have looked at nhs site and took screen shot of starting dose for niece as you all know is 50 to 100 with blood checks every few weeks till on right dose . I will be taking this with me. Neice was told wait 6 weeks for a check blood test .

She has a baby too. And is scared now of dropping her or not waking up when her baby cries etc.

It may be anxiety . But brought on now by her health worries naturally . She was not given a print out of her iron levels . Which is low . So How low I dont know. But she has low iron symptoms . She is crying a lot now over this. I am fuming . But ofcourse when I go I will give them time to explain any mitigating circumstances why she is getting this treatment plan . Something I don't know about . Thank you so much for your advice as always

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17 Replies
shaws profile image
shawsAdministrator

Some new mothers can develop hypothyroidism after having a baby.

hopkinsmedicine.org/health/...

poppppy profile image
poppppy in reply toshaws

Oh sorry the other hypothyroid results were pre baby I think . I did used to say I think you are . She has similar physical traits to me. Anxiety Depression , infertility issues ( luckily she conceived in the end .I didn't but am luckily fine with it now) , constipation, sleeps till noon if no one makes her get up . And some symptoms I didn't have . She doesn't have my presenting symptoms of brain fogs bordering on cognitive impairment . Like my dad presented with

shaws profile image
shawsAdministrator

This is ridiculous she should have been given an increase in dose with a TSH of 10+. Unless she is very frail with a heart disease her TSH dose is too low. The starting dose is usually 50mcg. Her B12, Vit D, iron, ferritin and folate should be checked too.

The aim is a TSH of 1 or lower with both Free T4 and Free T3 towards the upper part of the ranges.

poppppy profile image
poppppy in reply toshaws

Thank you and her iron is low . They have put her on ferrous fumarate. I dont know her other results as when she asked for a print out on my pushing her . They gave her just the tsh and t4 results only .

SlowDragon profile image
SlowDragonAdministrator

Standard starter dose of levothyroxine is 50mcg

Has she had thyroid antibodies tested, or vitamin D, folate and B12

Suggest she see different GP and request 25mcg dose increase in levothyroxine to 50mcg

Which brand of levothyroxine has she been started on

She should have had bloods retested 6-8 weeks after 1st TSH test over 5

See flow charts on top of page 2 here

gp-update.co.uk/Latest-Upda...

poppppy profile image
poppppy in reply toSlowDragon

Thank you . I dont know how high the first abnormal resuot was. Which was more than a year ago at least . She didn't get the results . Despite my pushing. No one takes much notice of their elders as you may know . I hope you don't know . Also I have worn the tee shirt as you know too . And I am ex nurse . But what do I know . Hey

SeasideSusie profile image
SeasideSusieRemembering

Poppppy

I have relied on your original thread as I had notification that you replied to me there with an update.

poppppy profile image
poppppy in reply toSeasideSusie

Thank you so much

SlowDragon profile image
SlowDragonAdministrator

She must have vitamin D, B12 and folate tested

Numb legs suggests low B12

Or get FULL thyroid and vitamin testing kit ordered here today as on offer

healthunlocked.com/thyroidu...

poppppy profile image
poppppy in reply toSlowDragon

Thank you . I will push nhs first as we are both financially rock bottom . But health ofcourse is my priority for her .so thank you. I tell u what it wont come to that because it will pals next . If no joy and or casualty etc .

Annoynomice profile image
Annoynomice

Just to note, as you leave the surgery ask for a printout of all tests. As you know its her legal entitlement and the reception should be used to this.

poppppy profile image
poppppy in reply toAnnoynomice

Thank you . I didn't know tjis so thank you .

Annoynomice profile image
Annoynomice

She can also get direct online access which also let's her order her repeat prescriptions nhs.uk/nhs-services/gps/usi...

This actually tells you how to access it by requesting a code from reception. nhs.uk/nhs-services/gps/onl...

Charlie-Farley profile image
Charlie-Farley in reply toAnnoynomice

Hi Annoyomice and @poppppy

Patient access not reliable and they will ‘hide’ things from you if you point out they have made a mistake. I took screenshots of my patient access then told them they had stuffed up and low, records ‘disappeared’. I took screenshots again - before and after. 😊👍

I have all my printouts from the labs - by far the best and most complete record.

SlowDragon profile image
SlowDragonAdministrator

Prescribed her migraine tablets for anxiety!

What tablets?

Is it propranolol (beta blocker) if yes how much

Propranolol Slows uptake and conversion of levothyroxine

pubmed.ncbi.nlm.nih.gov/168...

labtestsonline.org.uk/tests...

Drugs that may decrease PTH include cimetidine and propranolol.

rejuvagencenter.com/hypothy...

Propranolol Can be helpful temporarily if on ludicrously inadequate dose levothyroxine, as it spreads levothyroxine out …..but may affect thyroid blood tests

Make sure she gets next test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

And to get all four vitamins and thyroid antibodies tested

poppppy profile image
poppppy in reply toSlowDragon

Thank you so much for this . Some good news pushed for gp appointment today. Was a different gp who rang regardless of my wanting to be on the call . Anyway she upped the dose to normal starting dose of 50 levothyroxine but still said now have bloods in 4 to 6 weeks. Anyway my neice will aks for repair bloods in a week instead . I will tell he to avoid the propranolol. She was calmer when I saw her from the " upping the dose " . Which is pretty obvious to any lay person.

Thank you so much . I will try and get her to conform with all above but its hard back seat driving as you know.

I appreciate all your help so much

SlowDragon profile image
SlowDragonAdministrator in reply topoppppy

Have they definitely prescribed propranolol.

Number of medics who don’t know it interacts with thyroid is astonishing.

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