Should mum see an endo? Latest bloods

[Kipsy]

My 82 year old mum has been asking for a trial of thyroxine for over a year but her GP says she’s normal. She suffers from a variety of hypo symptoms including no reflexes in arms or legs, fatigue, low mood, apathy etc.

She is due to see for a private endo (one who helped me) next week so I organised bloods for her. I’m now really questioning whether she’d be wasting her money seeing him (something she can’t really afford) as the blood results came back today and her FT3 and FT4 levels have risen and look really good. She has had thyroglobulin antibodies for at least a year though so could it be the result of a Hashi flare? Or maybe not as her antibodies have fallen slightly?

These are her results firstly from a year ago and secondly from today:

CRP was 2.29 now 0.51 (<5)

Ferritin was 231 now 135 (13-150)

Folate was 19.01 now >19.8 (3.89-26.8)

Active B12 was 198 now 200 (37.5-188 but she supplements)

Vitamin D was 96.5 now 81.6 (50-175)

TSH was 2.95 now 2.3 (0.27-4.2)

FT3 was 3.82 now 4.8 (3.1-6.8)

Free thyroxine was 15.6 now 18.1 (12-22)

Thyroglobulin antibodies were 265 now 173 (<115)

Thyroid peroxidase antibodies were 17.8 now 19.5 (<34)

She’s recently seen an NHS rheumatologist who examined her thoroughly and declared her to be in excellent health for a lady of her age. He ordered bloods and a urine sample but we haven’t had those results yet. He suggested (kindly) considering seeing a psychologist for the low mood and anxiety.

Any thoughts much appreciated:

1. Could the surprising rise in FT3 be due to a Hashi flare?

2. Do you think it’s still worth seeing the endo? I feel it is, even if it’s just to completely rule out a thyroid problem despite the fact it’s a lot of money.

Huge thanks in advance for support, advice etc

[Marz]

Hi Kipsy .. I think I would give your Mum a quarter of a T3 tab and see how she feels.

Am sure you have read about Impaired Sensitivity to Thyroid Hormone - a book on Amazon by Hugh Hamilton. I read it on my phone ! - it goes some way to explaining the links within families ..

Hope your Mum is soon feeling less anxious. She is blessed to have you at her side. X

[Kipsy in reply to Marz]

Hi Marz,

Thank you so much for your reply.

Mum’s not taking any thyroid medication at present- do you mean for me to give her 5mcg of T3 and see what effect it has? Just the one dose? As a quick test to see if it has an immediate effect? Rather than start on T4? Sorry for all the questions- not something I’d thought of.

I’ve only vaguely heard of the Hugh Hamilton book. It sounds like you would recommend it. I should probably get it, especially with, as you know, a Hashi husband and two children who already have to supplement the usual vitamins to feel normal.

Xx

[Marz in reply to Kipsy]

Exactly why I mentioned the book. Hugh is a member here. My Mum slipped away at 80 and I so wish I knew 20 years ago the things I now know. It breaks my heart ... Yes I did mean T3 only ... the T3 showing on her test may not be reaching her cells. Check out Low T3 syndrome ... I personally think it's a bigger problem than detailed in the world of medicine. X

[Kipsy in reply to Marz]

I’m so sorry about your mum. It’s so cruel.

Thank you for clarifying- I think she should definitely still see the endo & I’m just compiling a checklist of things to mention to him (I’m taking her). I have done some research since I got your reply & have added thyroid resistance to my bullet points. I shall try to read Hugh’s book in the next couple of days. Thanks again Marz! Xx

[Marz in reply to Kipsy]

... and as your Endo is aware of links within your family he may well be receptive to the resistance bit ... I know other members here will not agree with my thoughts based on Mums results ... but I have always been one to put my head above the parapet. 😎😎

[Coconutty]

Absent reflexes, fatigue and mood changes are also symptoms of B12 deficiency. It may well be that she would respond better to B12 injections rather than oral supplements, if she can find a doctor willing to trial them. Did she have a B12 test done prior to supplementing? Has she ever had IFABs or PCABs tested?

[Kipsy in reply to Coconutty]

Thank you for your reply. We’ve drawn a real blank with the GP re B12 even though mum’s mum had PA diagnosed late in life. Stupidly I never realised she should have had B12 tested before she started supplements. We persuaded the GP to test her parietal antibodies, which came out negative. GP doesn’t seem interested. Mum’s neurological symptoms such as a creepy head sensation (like spiders in her scalp) stopped once she started supplementing B12 so I know she needs it. It’s exhausting!

[Coconutty in reply to Kipsy]

It is possible to start B12 injections off somewhere like a Revive clinic or similar, and then self inject thereon in. Really the only true test of deficiency is response to appropriate treatment. PA often has a hereditary component and the antibody tests are notoriously unreliable. Although a positive IFAB is diagnostic, a negative result cannot rule it out.

[Kipsy in reply to Coconutty]

Oh that’s wonderful news- thank you. I will do some research. Much appreciated.

[Marz in reply to Kipsy]

You can easily buy B12 injections and syringes on-line. PAS Forum willingly give out the info. We can buy OTC here for under 5 euro for 3 phials including syringes. Maybe test the anti-bodies again. Martyn Hooper tested negative around 10 times I believe before a positive result. Might be worth chatting to him - contact details on PAS website. I found him very helpful when concerned about my grandson ...

[Kipsy in reply to Marz]

Thank you Marz- really appreciate all the help everyone’s offering. Thank you!

[SlowDragon Administrator]

She may have Dio2 gene as well......

I wouldn't give her anything at this stage.....discuss options at consultation.

Presumably you will be with her for support at consultation

[Kipsy in reply to SlowDragon]

Thanks SD- yes, I am taking her and will aim to do the talking at the start of the consult. X

[Hidden]

Hi Kipsy - so sorry your mum is under the weather - did the rheumatology know about the history of P.A. when she had her checks? As she has absent reflexes this could be due to a spine lesion or to neuropathy which would have to be diagnosed by a neurologist. Vitamin B12 it has been recommended by some that supplements should be taken with folic acid B9? and iron. As ferritin levels were high but have gone down, is there any reason why they are lower now?

Is your mum on a gluten free diet and is she off her food at the moment, losing interest? I would definitely see the endo about the Hasho flares as you know already gluten is implicated and can damage thyroid function which leads to weak muscular function. Selenium ,zinc and vitamin C can encourage thyroid function and the conversion of T3. Depression may be caused by lack of vitamin D3 which is the activated form of vitamin D. I hope you can find more information after the results of the blood tests. There are a lot of other levels which might be relevant such as magnesium and potassium levels which can make you feel week. Know somebody who felt awful and was turned away by the Gp as ok with hashimotos - She eventually asked for a test for type 2 diabetes which she had for free at a branch of Lloyds chemist. It was a shock to find she had suffered for 18 months and the GP had not picked up the diabetes type 1. Can see you are on the trail - best of luck of working out the puzzle.

[Kipsy in reply to Hidden]

Thank you so much- lots of interesting thoughts there. Mum won’t consider going GF even though she’s seen me improve so much since I did. 😩 It’s tricky getting her to take any more supplements too- she does B12, B complex, D3 and K2 already and I tried really hard to encourage magnesium but I don’t think she takes it even though I buy them all. I don’t know why the ferritin has dropped back into range but I’m glad it has. Thank you very much!

[Hidden in reply to Kipsy]

Does mum like Marks & Spencer Food? They have arrange of gluten free foods and reckon if you feel so much better gluten free, she might do too.

Old age makes you resistant to change - but a change which is easy to do with ready made good quality gluten free food could make all the difference to her health. Hope she gets better during he warmer weather.

[Kipsy in reply to Hidden]

You’re so very kind. Thank you for that suggestion. I shall pass it on! She’s remarkable in that, at 82 and widowed for nearly 25 years, she still cooks from scratch every evening just for herself. I’m sure it’s why she’s not on any medication and is active. Thank you!

[crimple in reply to Kipsy]

A lot of M&S gluten free food isn't in GF section. You need to check their ingredients list. I used to buy their ready meals for my Dad who was GF, with PA, Crohn's. No Thyroid issues, he just bequeathed them to me!