Under active thyroid newbie

[Wicks50]

Hi all, I am so pleased to of found this site. I am newly diagnosed and under going treatment ( levothyoxine ) increasing dosage now for 3 weeks.. I don't really understand what's happening or what to expect but have concerns over the weight I'm gaining and the bloating and constipation I'm seem to be suffering which I know now is associated with the disease.

I'm so down about the Weight, as I've already gone into next dress size. The doctor isn't really telling me any thing. I have no idea how long this is going to take before I reach my normal hormone levels, how it will affect me will deficiency in other areas such as vitamins etc.

Can any tell me what I should be asking the doctor as I'm there tomorrow for another blood test. Should I be asking for a print out of my result?

I had to pay for the first prescription, which I'm almost out of, should I be receiving a certificate of some kind ?

I am a vegetarian and have read that certain foods can affect the condition is this true?

Thanks in advance

Teresa

[shaws]

Welcome to our forum and members are very helpful.

If you are in the UK and have been diagnosed with hypothyroidism we are entitled to free prescriptons for life - no matter what other diseases or medical problems you develop. You have to get a Medical Exemption Certificate.

Unexplained weight gain is the commonest question on the forum and it is due to hypothyroidism causing our metabolism to go very low, therefore weight can be increased.

We're usually puzzled if our diet hasn't changed but it is a clinical symptom. As dose of levothyroxine is increased to an optimum level, weight and other distressing symptoms should resolve.

We've found out that most doctors and endocrinologists are not knowledgeable about how best to treat us and only seem to look at the TSH result (which is from the pituitary gland and called Thyroid Stimulating Hormone) and it is this which rises trying to flag the Thyroid Gland to issue more hormones which it cannot do so we get prescribed levothyroxine which is an inactive synthetic T4 replacement but should convert to the Active Thyroid Hormone T3 and it T3 which is the most beneficial as our millions of T3 receptor cells need it in their cells in order for our metabolism to function as normal. It is not a quick fix and may take some time.

Thyroid hormones have to be taken, usually first thing when we awake with one full glass of water and wait an hour before eating. This helps to absorb the hormones as food interferes with the uptake.

Blood tests should be at the very earliest, fasting (you can drink water) and allow a 24 hour gap between last dose and test and take afterwards.

Ask GP to test B12, Vit D, iron, ferritin and folate too as we are usually deficient.

Always get a print-out from the surgery of your blood test results and make sure ranges are stated. Ranges enable members to respond.

[Wicks50 in reply to shaws]

Thank you, I had no idea I had to fast before blood test! They haven't told me anything only that my T4 is very low and to start increasing dosage weekly.

So, I have to fast and not to medicate un till after my blood test is that correct ?

[shaws in reply to Wicks50]

Yes - if you refer to a 'fasting' test test in the surgery - don't be surprised if they tell you it's not necessary to fast. The reason being it is a members' tip so that we'll get the best blood test results possible.

For instance, if we have breakfast and then blood test or tested later in the day it could mean the difference between getting an increase in dose or not. Usually in the surgery a 'fasting' test is only to check cholesterol. The TSH drops throughout the day too.

It is a learning curve for us and if you also read others' posts you will soon have sufficient knowledge and most doctors and endocrinologists only look at the TSH and T4 results. That's not sufficient.

[Annoynomice]

Hi wick50

You get the exemption form from your doctor. They send it away and a card comes in the post. So you'll have to pay in the meantime.

I would also see if you can register for the NHS app as the bare minimum you'll be able to do is book an appointment with the doctor/ nurse. And order repeat prescriptions direct to your nominated pharmacist. Some doctors allow access to test results but mine doesn't.

At the moment, my doctor seems very encouraging, I'm currently awaiting results of a retest as my NHS one was normal and my private one showed me out of range. She didn't even blink to order a second one and seemed to understand that levels can fluctuate.

Some others will be able to post on vitamins but it might be worth checking your levels of Ferritin as well.

Hope all works out

[Wicks50 in reply to Annoynomice]

Great Thank you I will. ☺

[Kip4 in reply to Annoynomice]

I had to pay for my first prescription and once my exemption card came through, I was able to request a refund. All you need is to present the portion of your prescription you keep to the pharmacist.

[Wicks50 in reply to Kip4]

Good to know thank you.

I've read so much about foods that can affect the meds and thyroid levels..is this true? I don't eat meat but do eat meat substitutes do you know if this will be a problem?

Teresa

[helvella Administrator in reply to Kip4]

That is not what the official advice says - see my reply re FP57 on this thread.

[Arlenka]

Welcome to this group. I’ve really learned a lot myself. I was advised to not take my B supplement for up to 3 days as it has Biotin in it which can affect you levels.

Good luck x

[Mary-intussuception]

You need to get the form from your GP to apply for exemption from prescription fees. This applies to all your prescriptions (not just your Levothyroxine ) now that you have been diagnosed with Hypothyroidism. I think you should be able to get a refund for all the presriptions you have paid for since this new diagnosis. Did you keep your receipts for your Vertigo presription also? Would the pharmacist give you copies?

[helvella Administrator in reply to Mary-intussuception]

No - you can ONLY get refunds if you have the right receipt(s):

How can I claim a refund

Ask your pharmacist, hospital or doctor for the refund form (FP57) when you pay for your prescription. You can't get one later. You have to apply for a refund within 3 months of paying the prescription charge.

nhs.uk/using-the-nhs/help-w...