First post, help needed please...

[RobynSM]

Good Morning

My Thyroid & it's healing have been a part of my life for the last three years; I managed to get my TPO down with diet (followed AIP for 6 months and massive change to lifestyles) & TSh down with Levo (120mcg) which worked fine and no hypo symptoms.

However, I had an operation earlier this year and have felt hideous since; exhaustion, irritability, low mood, muscle fatigue, hair loss, weight gain, dry skin and joint pains. Had TSH tested soon after and it was 4.48, my GP says this is within normal range and he won't increase dosage or do any other more tests. He is insistent that my symptoms would not be related to what he terms as 'still within normal range'.

I am feeling incredibly frustrated and let down - I know my symptoms are due to being hypo and because of the exhaustion and fatigue I am needing to resort to stimulants (coffee and sugar) which I know is so detrimental to adrenal health and antibody attack on my thyroid; have noticed nodules too which is a new thing. It's like a downward spiral!!!

I am moving to a different part of the country soon (SW) and looking forward to prospect of possibly finding a gp who will prescribe NDT - but until then (& I am aware this may be wishful thinking), paying for NDT is not an option for me right now so that rules that out.

Anyone have any advice for me please?

[Clutter]

Welcome to the forum, RobynSM.

Your GP is wrong. TSH 0.35-1.0 is also within normal range and most patients will feel well there and very unwell with TSH 4.48.

The goal of Levothyroxine is to restore the patient to euthyroid status and for most people this will be when TSH is 1.0 or lower with FT4 in the upper range. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email [e-mail] if you would like a copy of the Pulse article to show your GP. If he persists in refusing to increase your dose see other GPs at the practice.

NDT isn't licensed for UK use so it is rarely prescribed on the NHS. Most members using NDT have private prescriptions or buy online and self medicate.

[RobynSM in reply to Clutter]

Thank you Clutter, it is reassuring to know - for the last three months I have been feeling awful I am so exhausted; that deep muscle fatigue exhaustion and with it the irritability - big moon face that just makes me feel worse, skin is dry and chicken skin on legs again, hair falling out (I have been collecting it in a bag this week to show my GP). My family is suffering as a result too, I have a friend who buys her NDT online and manages it well, but pays £168 a month which I am not sure I could afford long term. I'm going to email Louise now too - and read the pulse article as well, appreciate the link, thank you.

[Clutter in reply to RobynSM]

RobynSM,

Louise is away this week and some of next week so there may be a delay in responding to your email.

[RobynSM in reply to Clutter]

Thanks Clutter, I'll keep an eye out in the next week or so, I am away myself next week so it'll be when I get back.

[vixvixvix]

I doubt you'd get NDT from the nhs, (my gp laughed at me derisively and it was the best decision to ignore them and self treat) as it's not normally prescribed and pretty much against the NICE guidelines (from my understanding) but there's a misconception that ndt is crazy expensive. Mine cost less than £40 for what works out to be around 2 years worth of medication. Sadly what works out to be really expensive is all the supplements for optimal vit and adrenals 😞😞😞.

In the mean time perhaps you can get them to test your b12, ferritin, vit d and folate? They are essential for thyroid health and f you have any severe deficiencies at least the nhs can shoulder some of that cost and it will help the meds to work better.

[RobynSM in reply to vixvixvix]

THanks Vixvixvix, I plan to go back to my GP after re-test next month (I cannot see him for a month as this is deemed non-emergency, which is craziness), when I do see him I'll ask for him to test for deficiencies.

May I ask where you get your NDT from so cheaply? I was expecting to pay around £200 a month!!!

[Marz]

If your anaesthetic contained Nitrous Oxide it could well have depleted your B12 stores. This can present similarly to being Hypo. It could also affect the conversion of the T4 into T3. Any chance you could have some private testing done through Thyroid UK with Blue Horizon ? If so I will send you the link

[RobynSM in reply to Marz]

Hi Marz,

I hadn't even thought about the anaesthetic effecting levels (naively?!?!). I have another two smaller operations booked in later this year worth being mindful of... Yes please Marz, I'd' appreciate you sending the link. Thank you

[Marz in reply to RobynSM]

thyroiduk.org.uk/tuk/testin...

I have also read that NO is not always used - so do check with the Docs.

People go for the Thyroid 11 testing as it contains most everything that will determine a diagnosis.