Help for my mother

[BelfastGirl737]

My mum (aged82) was diagnosed with hyperthyroidism over a year ago. She has been treated with Carbimizole and propananol. She stabilised and they stopped all medication at the end of 2019. However she deteriorated again and she was put back on her medication. Her recent blood tests have shown as stable and the GP has told her to keep on with her dosage. The problem is she is suffering from extreme fatigue, has no energy and even struggles to eat. Along with other symptoms it is all getting her down. I have lost faith in her consultants as at the last telephone appointment he suggested it was because of the lockdown. Do we go back to the GP who aren't specialised. I wonder if it is worth going to see a private consultant. I feel like we just keep coming up against a brick wall especially due to her age. Does anyone have any suggestions? We live in Belfast. Thankss J

[fuchsia-pink]

Welcome to the forum.

Do you have your mother's latest actual blood results (and reference ranges)? - we need the reference ranges as these vary from lab to lab.

Most GPs know very little about thyroid - and most endos in England, certainly, aren't much better - they tend to be diabetes specialists. So there is always a danger that they look at your results, see that these are somewhere in the range, and say you're fine. But you're not - because just being "stable" or "in range" or "normal" isn't necessarily the same as "optimal". For example, the free T4 range might be 12 - 22. If your result is 20 you may feel great. If it's 12.2, you will probably feel rubbish - but both are "in range".

What is best varies from person to person. Also, you really need full testing - that's TSH, free T4, free T3 and key nutrients - ferritin, folate, vit D and B12, but all too often they just test TSH and - f you're lucky - free T4.

There are lots of lovely people on this forum who can help, but it seems quite likely her results aren't good enough for her.

[Thomasena in reply to fuchsia-pink]

Iodine cleans the thyroid. Seaweed or dulse granules in a smoothie. Great book called the Iodine Crisis written by a nurse

[fuchsia-pink in reply to Thomasena]

Not sure if your post is meant for me - but please note that you need to be REALLY careful if you're on thyroid meds - excess iodine can make you very ill indeed. Most of us get enough iodine in our diets and our levo - kelp and seaweed should be strenuously avoided

[helvella Administrator Thyroid UK in reply to Thomasena]

Iodine cleans the thyroid.

I don't think I even understand what that means?

Iodine is not something to just take. Most especially in the form of seaweeds which have variable iodine content.

[BelfastGirl737 in reply to fuchsia-pink]

Thanks I assume the doctor will give these to us.

[fuchsia-pink in reply to BelfastGirl737]

You are legally entitled to blood test results, without giving a reason - but it's usually easiest to say you want them "for my records".

Suggest you start a new post when you get them x

[BelfastGirl737 in reply to fuchsia-pink]

Thank you

[SlowDragon Administrator]

Before considering seeing any Thyroid specialist endocrinologist you need to organise FULL Thyroid and vitamin testing

For full Thyroid evaluation your Mum needs TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, with Graves or Hashimoto’s

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Thyroid plus vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes antibodies and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/thyr...

Medichecks - JUST vitamin testing including folate - DIY finger prick test

medichecks.com/products/nut...

Medichecks often have special offers, if order on Thursdays

Also email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists...there may be one or two in N Ireland ....NHS and Private

[e-mail]

[BelfastGirl737 in reply to SlowDragon]

Thanks for all the info... We really aren't aware of any of this. Let's hope the Go will listen

[pennyannie]

Hello Belfast Girl and welcome to the forum :

There's a very good chance your Mum's vitamins and minerals are low and her core strength weak - and in the first instance suggest a full thyroid panel to include ferritin, folate B12 and vitamin D be arranged so we can take a look for any obvious solutions that you can solve for yourselves.

The AT drug blocks thyroid hormone production and if not finely balanced and on the correct dose you run the risk of reducing the patient's metabolism too low thereby creating hypothyroid and all that goes with this insidious health condition.

When hyper your Mum ran the risk of low vitamins and minerals as her body clock was running too fast, and now it could have been compounded by too much AT medication, and running too slow - we'll only know for sure when we can see blood test results and ranges.

There are people on here very able at reading and understanding the blood test results so you'll get a considered opinion before having to go out into the unknown waters of so called specialists.

[greygoose]

The thing you really want to know is how her hyperthyroidism was diagnosed. You need to see ALL her blood test results right from the start. Odds are she wasn't really hyperthyroid to begin with, but doctors rarely do all the right tests. It's very, very important to know what was tested, and what the results were (with ranges) before you can decide how to go forward.

[ling]

Does mom have any other medical conditions?

[BelfastGirl737 in reply to ling]

She's on an antibiotic for urinary tract problems and has scarred lungs from pneumonia 2 years ago but just had checkup and no deterioration on that front.

[ling in reply to BelfastGirl737]

Is her heart rate high?

What other symptoms does she have?

Has her TRAb or TSI antibodies been retested?

Given she's back on the carbimazole, that's the right course of action if her Graves is back. And if the Graves is back, something about it is causing her extreme fatigue and loss of energy.

But Graves does affect the elderly differently than in younger folk. There could be some onset of depression. My dad developed Graves in his 70s and on hindsight, it affected him very differently than it did me.

TBH, unless a doctor has good and wide experience, I don't believe many would really know that Graves can affect the elderly very differently.

[BelfastGirl737 in reply to ling]

No her heart rate is fine. She was very healthy until this all started with her being hospitalised and them diagnosing Thyroid issues. Her symptoms are extreme fatigue and difficulty sleeping, weak turns, shaking hands (propanol has helps this to some extent), extreme night sweats, weight loss due to loss of appetite, burning legs & feet, constipation which has lead to depression/anxiety. This has all broken her spirit. It is so difficult to know what is age related and what is thyroid related but her quality of life is so poor. I don't know what TRAb or TSI antibodies are but I'm going to organise private blood tests as the GP blood tests only show TSH levels. Our GP is good but as you say they have limited experience and age is definitely considered too much when dealing with the eldery.

[ling]

What does weak turns mean?

If she was diagnosed with thyroid issues while hospitalised, there should be a record of the blood tests done to diagnose the hyperthyroidism and the type of hyperthyroidism.

I mistakenly thought your mom had diagnosed Graves hyperthyroidism as she is being treated with carbimazole and Propranolol. But that may not be the case if she hasn't had Graves antibodies tested. Graves diagnosis is confirmed by either TRAb or TSI antibodies.

There are different types of hyperthyroidism and the treatments are different. My heart really goes out to your mom, to have to be suffering these awful symptoms suddenly at this age. I can imagine how distressing it must be for her, as I am looking after my own mother.

It is fairly common for the elderly to develop hyperthyroidism. The point is to identify the type of hyperthyroidism in order to be correctly treated. Once u know this, I believe u will be able to adequately deal with a lot of the symptoms, which will bring relief to your mom.

[BelfastGirl737 in reply to ling]

thank you