Advice

[PrincessAnnie]

I’m just wondering if anyone has joined the British Thyroid Foundation and found it to be beneficial?

[RedApple Administrator]

PrincessAnnie, As this forum is linked to the charity Thyroid UK, we would (understandably!) point everyone who'd like to support the cause in their direction rather than the BTF 😀 thyroiduk.org/help-us-to-he...

[SlowDragon Administrator]

This forum is run by Thyroid U.K.

thyroiduk.org

This is a patient lead support group

nhs.uk/services/service-dir...

[jimh111]

Yes, I have found their meetings with talks from doctors useful. I would strongly recommend joining ThyroidUK if you haven't already done so. The BTF have improved over recent years, ThyroidUK has been true to patients right from the beginning. No reason not to support both charities in a constuctive way but please join ThyroidUK if you haven't.

[PrincessAnnie]

My apologies I’m not very internet savvy😳I had no idea that thyroid uk was even a charity🤦‍♀️It’s my brain fog,well that and the fact I have a 1000 thoughts going around in my head on how to help myself.

[bobbyb]

I haven't joined and would never join. I don't think they have the interests of thyroid patients at heart at all, I asked them for advice once and am so glad I didn't follow it otherwise I would have remained desperately ill. This is a very informative forum and the people on it are very helpful and kind. i would highly recommend this one.

[PrincessAnnie in reply to bobbyb]

Thank you,I’ll join thyroid uk tomorrow x

[shaws Administrator in reply to PrincessAnnie]

All members on this forum have a dysfunctional thyroid gland and many of us couldn't recover on the 'rules/regulations' laid down by the NHS.

The help/insistence is by hypothyroid members who have become knowledgeable and helpful.

Members are very helpful to one another and many have improved their health regarding a dysfunctional thyroid gland.

The BTA regulations may not improve our symptomatic hypothyroidism and also they don't seem to approve of 'other' options if levothyroxine isn't suiting our body.

A short time ago they removed one replacement that has been prescribed for years i.e. since 1892 - it is called NDT - meaning Natural Dessicated Thyroid Hormones - made from animals' thyroid glands and from 1892 people recovered their health beginning with small dose and small increments until they felt well. No blood tests but the skill of the doctors knowing how to diagnose Hypo or Hyper thyroidism just through the patients' symptoms.

Their decision then caused immense worry for patients who had been symptom-free and felt well again. I think that their decisions show that they know very little about disabling symptoms some people can develop.

Their insistance is that levothyroxine does the job and relieves symptoms. It might do for some but not for all hypo patients.

There are two main thyroid hormones i.e. T4 (levothyroxine) and T3 (liothyronine). T4 is inactive and has to convert to T3 and T3 is active and it is T3 that runs our whole body and the brain and heart contain the most T3 receptor cells.

Thousands of people find T4 helpful and have no trouble with it at all. Others may have problems.

The following is advice regarding your next blood test.

1. Always make the very earliest appointment if having a blood test. The reason is that they check the TSH (thyroid stimulating hormone) and it varies throughout the day, highest early a.m. and that's why we recommend the earliest blood test (which is a fasting test) and we don't take thyroid hormones before test but afterwards.

2. Pills should be taken with one full glass of water and wait an hour before you eat. Food can interfere with the uptake of thyroid hormones.

3. Ask GP to check your B12, Vit D, iron, ferritin and folate if not already tested.

4. Always get a print-out from the surgery of your results and the ranges should also be on sted.

5. If you have a query, post your results with the ranges for comments from members.

[PrincessAnnie in reply to shaws]

Thank you🙏I’m waiting on a copy of my blood results as I’ve asked for them,I’m going to call again tomorrow to see if the doctor has issued them yet.I wasn’t aware about the not taking meds before a test until someone told me this yesterday.

I was looking at the NDT,from what I can gather it was too expensive but I might have got it completely wrong.

[shaws Administrator in reply to PrincessAnnie]

I don't know the cost but it is probably the reason 'those at the top of the tree' withdrew it from being prescribed. They may also have been looking for an opportunity to do so.

It used to be prescribed on the NHS and when withdrawn it threw lots of people who had recovered their health with it into disarray and I assume afraid of the future and some people may not have had the werewithal to pay.

[Hoxo in reply to bobbyb]

I concur with this. Not a fan of BTF.

[Me1157 in reply to bobbyb]

You don't have at look the information if you join, or you could make a donation. This charity is our voice for thyroid treatments that don't fit the NHS boxes. I look at as I'm helping those who are helping me

[Delgor]

Would definitely not join as some of the docs are well known for advocating the use of Levothyroxine only - all well and good if it suits you but sadly this isn't the case for many on this forum.

[pennyannie]

Hello PAnne and welcome to the forum :

i think you owe it to yourself to read all around the subject.

Eventually, even with the brain fog, you will see where you are best placed to read, and no doubt reread, and understand how to find the best way forward for you and your health issues.

[Lulu2607]

Hi. I haven't joined BTF but I browsed their website for info on thyroid relating to my own problem. I found it quite useful and there are a number of patient stories etc which were also useful. I haven't felt the need to join them as such but I personally have found the website a good source of info compared to a lot of other stuff you might turn up when you start googling!

[TaraJR]

BTF are affiliated to BTA. BTA are divided on their views on T3, and don't advocate NDT. BTF follow what BTA say. So not my favourite thyroid charity.

Some of the BTF webinars have been informative, but their current president is vehemently against T3, and that is being shared amongst patients and clinicians, going against national guidance. As T3 gave me my life back, you can imagine my thoughts! I much prefer TUK and HU!

The Thyroid Trust is an excellent charity. Still small, and only about 5 years old. They certainly need support as they are brilliant, and 100% about patient need, including T3! They help spearhead the T3 campaign which has reached NHS England and Parliament.

[miravgraves]

BTF is a biased institute just like the BBC that only follows government guidelines, ie computer says no. Thyroid UK is an independent charity and will give all news on our conditions and not want they want you to know.

[Valarian]

Whether you choose to join up is up to you - I suspect many people using this form aren’t members if Thyroid UK and currently both sites provide information for free.

As for whether it”s beneficial, although ThyroidUK has improved the information it provides for people who have hyperthyroid conditions, there is a lot of useful stuff on the BTF site. You may not agree with all the conclusions they draw, but the information is factual and will explain the likely treatment in the UK. It does seem to be more accepting of long term carbimazole for people whose Graves’ doesn’t go into remission than used to be the case.