81 year old mum- secondary hypo?: I’m still... - Thyroid UK

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81 year old mum- secondary hypo?

Kipsy
Kipsy

I’m still trying to help my lovely old mum who has no diagnosis of thyroid disease but is still suffering from low mood and many of the symptoms I had before I introduced T3. She’s been told to return to doctor in a year unless symptoms increase.

Her in range TSH has always confounded me, due to my lack of awareness of secondary hypo, but I am now wondering if that is what she has. I’d be grateful if anyone would kindly advise.

She supplements B12, B complex, D3 and K2 and I should probably also get her to take magnesium. I’m tempted to source some Levo for her as we are off to Greece next week, if her GP continues to turn a blind eye but am also nervous- it’s one thing self medicating myself but quite daunting thinking about helping someone else do so. I have the DIO2 faulty gene (heterozygous) so perhaps she might have it too, in which case would Levo help anyway??

These results are from Medichecks in June 2018.

TSH 2.95 (0.27-4.2)

Free T4 15.5 (12-22) 36% through range

T3 3.82 (3.1-6.8)

Thyroglobulin antibodies 265 (0-115)

TPA 17.8 (0-34)

Active B12 198 (25.1-165)

Folate 19.01 (2.91-50)

25 OH Vit D 96.5 (50-200)

CRP 2.29 (0-5)

Ferritin 231 (13-150)

Any advice gratefully received. She’s been tested for intrinsic factor too, which was negative. The GP wrote to an endo for advice but her TPO Abs aren’t high enough for them to be bothered and the NHS didn’t test her thyroglobulin ones. They also only tested her TSH (2.64 as done a little later in the day than the Medichecks one, range 0.27-4.2) so it’s the usual problem of them not having a full enough picture. Mum is 80 miles away and although she’s been great about following my advice so far, she’s very reluctant to go back to the GP yet again.

Sorry for the long post. Thank you for reading.

26 Replies
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Kipsy
Kipsy
in reply to Hidden

Thanks for your reply. The reason that I said I should probably get her to take magnesium was because it’s a cofactor of D3 but it sounds like there’s more for me to research.

Her ferritin is too high. If supplementing then stop. If not then get a full iron panel from GP. Also needs investigation into why TgAb antibodies are raised. Good reason to visit GP and ask for further tests.

Kipsy
Kipsy
in reply to Nanaedake

Thank you but GP doesn’t want to know. Mum is not supplementing iron and mentioned that her ferritin levels are high. GP didn’t comment. When faced with the Medichecks antibodies result and a letter that I wrote on mum’s behalf, the GP said it was outside her knowledge and that she would write to an endo for advice. The advice that came back was to do nothing for a year unless symptoms increase. I would just like my darling mum to have the best quality of life possible at her age but feel that I’ve hit a brick wall.

Nanaedake
Nanaedake
in reply to Kipsy

Get a second opinion from another GP in the practice and ask for full iron panel. I don't know much about iron but you could ask for referral to a haematologist rather than an endocrinologist. Check NICE guidelines on iron first to find out what the referral recommendations are for haematology.

Kipsy
Kipsy
in reply to Nanaedake

Thank you very much. I think that mum is embarrassed to go back and rock the boat by asking for yet more tests and it would be hard to persuade her but I will bear your advice in mind for if she starts coming round to the idea. Thank you.

There would be lower TSH and FT4 with secondary/central hypothyroidism.

pituitary.org.uk/news/2017/...

That’s really helpful- thank you. Right, I will discount that particular possibility. Thanks again.

Having read that article I'm confused. How do doctors know if a person has a problem with their pituitary gland or their thyroid gland? I can understand if someone has a pituitary tumour but how do they know otherwise if symptoms relate to a pituitary or thyroid problem?

If both TSH and free T4 are low would be the simplest test. Patient history, as problems can arise years after a head injury. HPA axis dysfunction can also be a problem for those with Lyme disease.

shaws
shawsAdministrator
Kipsy
Kipsy
in reply to shaws

Thanks Shaws! I just wish the NHS adhered to TUK’s flowchart! I did write to mum’s GP requesting a trial of Levo and included some research gleaned from this wonderful site over the last 18 months. That prompted the GP to write to the endo but, as you’ve probably read above, his advice was to wait a year unless symptoms get worse. I think I may get her to tick off all her symptoms and encourage her to insist that they are getting worse!

shaws
shawsAdministrator
in reply to Kipsy

These are symptoms:-

thyroiduk.org.uk/tuk/about_...

For goodness sake - your Mum is 81 years old - why not give her a trial because it could improve her health.

Mum can get a private blood test - a Full Thyroid Function one - from one of the recommended labs. If decide to do so, make sure she's well-hydrated a couple of days before and that blood draw is at the earliest possible, fasting (she can drink water) and then post results, with ranges on a new post.

These links may be helpful - excerpt:

TSH is not a thyroid hormone and is not an appropriate

guide to thyroid replacement therapy. The hypothalamic-pituitary secretion of TSH did not evolve to tell physicians what dose of levothyroxine a person should swallow every day. A low or suppressed TSH on replacement therapy is not the same

thing as a low TSH in primary hyperthyroidism. If you have central hypothyroidism, the TSH will necessarily be low or completely suppressed on T4/T3 therapy; your physician must treat you according to symptoms and the free T4/free T3 levels.

hormonerestoration.com/Thyr...

hormonerestoration.com/

Kipsy
Kipsy
in reply to shaws

Thanks again Shaws. Mum did a full thyroid and vitamins blood panel, including vitamin D, via Medichecks back in June. The results are the ones I put at the top of my post. I sent them to her GP with a letter requesting a trial of Levo but didn’t get very much help from the GP or the endo so I’m not sure repeating all the bloods would sway anything??

Thanks for the symptoms list. Next time I see her, I will get her to check off what she’s experiencing and I will write to her GP one more time. If that produces nothing, she may want to self medicate.

shaws
shawsAdministrator
in reply to Kipsy

I've added a para to my previous response.

shaws
shawsAdministrator
in reply to Kipsy

I'd say her T3, being at the bottom of the range could be the cause. It doesn't say it is a Free T3 but anyway the T3 is too low at the bottom of the range when it should be nearer the top. T4 is an inactive hormone and it has to convert to T3. T3 being the only active thyroid hormone which makes our body function properly and normally. If we don't have a decent FT3 we will have symptoms I believe.

(I will state, too, that I'm not medically qualified).

Kipsy
Kipsy
in reply to shaws

My feeling exactly! Hence my considering getting her some Levo if the GP is still procrastinating. Thanks for confirming I’m on the right track.

Kipsy
Kipsy
in reply to shaws

It sounds like Henry Lindner talks a lot of sense. Thanks Shaws- I haven’t seen this before and am looking forward to reading it in detail.

Marz
Marz
in reply to Kipsy

You could politely reply to her GP saying that a whole year in the life of an 81 year-old is a long long time ... :-) x

Kipsy
Kipsy
in reply to Marz

Thank you Marz!👍🏻👍🏻😫😫x

SlowDragon
SlowDragonAdministrator

Her high ferritin perhaps needs investigation by haematologist for possible hemochromatosis

Has she had full iron panel? You could organise via Medichecks again if she's reluctant to ask GP

Then perhaps ask your endo to recommend a haematologist

Suggest you do DIO2 test on her as well

She's not taking aspirin or any other blood thinners? If she is she shouldn't be taking vitamin K2

Hello there 😀😀

Thanks for the reply- I’d read up a bit on hemochromatosis. I will revisit that and remind myself. Hubby has high ferritin too...doctors seem disinterested ...perhaps I can kill two birds with one stone!

I’ve been through all the test results that I have for mum and can’t find any referring to a full iron panel. Good idea re Medichecks - I always forget that it’s not just for thyroid and the 20% offer is still on.

And a good idea about asking my endo (if I’ve interpreted that correctly) for a recommendation.

Is there any point in her doing the DIO2 test if she’s not even on Levo? I thought that it’s main purpose was to help in obtaining T3?

And thanks for the heads up re K2. No, she’s not on anything at all (pretty good for an oldie!) but I will remember that in case she ever is.

Hope you’re ok?? Xx

How are things with your Mum ? Hope she is OK and you too ... x

Kipsy
Kipsy
in reply to Marz

Thanks so much! She’s doing ok thanks but won’t see the GP so I’m laying off for a while until she decides she wants some help. We’re all good thanks- how’s your hip?? Xx

Marz
Marz
in reply to Kipsy

Tons better thanks - all disappeared around the end of June - after three years of feeling/walking like an old lady . Still tender to touch ! Now have tendonitis in the left foot so having Acupuncture with my Physio. When asked how long it had been hurting - my reply was - oh around 40 years or so !! I was diagnosed with Fibro back in 2000 which I have always pretended I do not have - but all major joints hurt and the tendons/ligaments/muscles close by ALL hurt too. My Dad had Fibrositis and had Algipan rubbed in around his shoulders before going off to milk the cows :-( T3 and VitD optimal - still doing B12 jabs - so really stuck !

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