Underactive Thyroid?

[Dafttart100]

Hi, I've been tested numerous times, but my results are hovering around 90 ish, and until they reach the 100 mark my GP won't prescribe any thyroid treatments. But... I have all the symptoms of an under active thyroid and feel really bad most of the time now. Can anybody recommend anything that I can take that I can buy over the counter to help - until such time as the GP decides to help me? Thanks in advance.

[ttcwithhypo]

Please research taking Natural dessicated thyroid. There is info online and a book called Stop the Thyroid Madness that I too read when my GP did NOTHING to help me and dismissed many many symptoms. I am still new to it but I feel the difference straight away, it's amazing. It is difficult to get hold of NDT but online in UK you can get one called Natural Sources Raw Thyroid. I really recommend the book and related info that goes along with it online.

[shaws Administrator in reply to ttcwithhypo]

We have to have some history of people's medical conditions and advise them on blood tests etc to have . We just cannot suggest that members take replacement hormones before being sure that is what is causing the symptoms.

[ttcwithhypo in reply to shaws]

I'm just trying to help a person who may feel as desperate as I did. I advised they research it. The rest is up to them.

[shaws Administrator in reply to ttcwithhypo]

First, is that they have to have had a test which confirms they are hypo. In the UK doctors are told to diagnose only when the TSH is 10. We ask for a copy of test and if TSH is just above range, around 5, with symptoms we agree they are hypo.

We cannot assume they are hypo as symptoms could be due to something else.

I understand desperate as my TSH was 100 when, finally, diagnosed so we have to try as much as possible to direct them to get proper tests, ones that GP will probably not do.

[Kell-E in reply to shaws]

While it is true that symptoms can be from something else, TSH is not the best indicator for thyroid status. In secondary hypothyroidism, TSH can be normal or low. I can assure you that mine never got above 2 and I was very hypothyroid.

I'm not saying that there is no value in blood results, but caution is in order... otherwise we start to sound like the endo's and GP's who dose and diagnose by TSH.

And we also have to be careful not to make the diagnostic mistake of presuming that we only have one problem that is causing symptoms.

[shaws Administrator in reply to Kell-E]

We do know that TSH isn't the best indicator but as that's all they use in the UK, the patients tend to suffer.

Dr Skinner (now deceased) and other doctors trained in in the 50's/60s knew all the clinical symptoms and we were given a prescription for NDT and gradually increased until we were symptom-free. None of us on this forum are medically qualified as far as I know but even the medically qualified cannot diagnose because they haven't been trained in clinical symptoms but only, it would appear, the TSH whereas we know that both FT4 and FT3 reveal quite a lot.

One of our Advisers have also written about the TSH as well.

healthunlocked.com/thyroidu...

[Kell-E in reply to shaws]

First, medically qualified, LOL.

Second, just because a TSH test is all you can get does not make if of greater value.

Third...good article...

[Dafttart100 in reply to ttcwithhypo]

Thank you - that's very helpful. x

[Marie0606 in reply to ttcwithhypo]

Hi! Can I ask what would you say it is a good dose to start on NDT ( based on your experience of course). I suffer from hypothiroidism and dr. Only prescribes levothyroxine, I have been on 25, 50, 75 and 100 mg of syntroid in about 8 years and no one day I have felt good. I am almost bald, gaining weight, my forgetfullnes is alarming... so I bought NDT from Thailand and I am willing to give it a try, after all I can not feel worse. I am currently on 50mg of levo. Thanks!

[ttcwithhypo in reply to Marie0606]

Have replied in your inbox as I needed to give you a website for research

[shaws Administrator]

Are you in the UK?

I don't understand what you are referring to when you state:-

but my results are hovering around 90 ish, and until they reach the 100

In the UK, when our TSH (thyroid stimulating hormone) reaches 10 we will be prescribed levothyroxine even though we may have clinical symptoms long before we reach 10. In other countries we are diagnosed when the TSH reaches 10+.

Can you get a print-out from the surgery of your most recent test and post on a new question. You should also quote the ranges.

When you have a blood test for thyroid hormones, it has to be at the very earliest possible, fasting (you can drink water) and if you were taking thyroid hormones you'd allow a gap of 24 hours before the test and take it afterwards,

[Dafttart100]

OK thank you. I'm not sure what I mean, either! lol. Just what the doctor has told me - but from looking around this site, it appears the range is 0-10, not 0-100, so I'll check it out with the GP and ask for the printout as you suggest. I'm guessing it's hovering around 9, then, not 90, but I'll ask her for more specific info. I had around a dozen blood tests - all proving 'negative' so they were repeated - also proving 'negative' but she told me I've been hovering just under the 'magic number' for a couple of years now, so again, I'm back to guessing it was 9 (ish). Also, I wasn't asked to go for a fasting test, but a non-fasting one - so next time I'll know what to do. Thanks for your help. x

[Dafttart100 in reply to Dafttart100]

and yes, I'm in UK.x

[shaws Administrator in reply to Dafttart100]

What we have to do is get a print-out each time we have a test. We are entitled and make sure the ranges are stated.

Doctors seem to be unaware that if we eat before the test the TSH drops, It is highest early a.m. and drops throughout the day. I doubt they know that either. If we had a test late p.m. they would probably adjust the dose of levothyroxine a well that's why we recommend the earliest test.

[SlowDragon Administrator]

You are entitled to your own blood test results

Need TSH, FT4, FT3 and thyroid antibodies testing

Plus vitamin D, folate, ferritin and B12

Private tests available via Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven

DIY finger prick test or option to pay extra for private blood draw

All thyroid tests should be done as early as possible in morning and fasting for highest TSH

[Dafttart100]

Marvellous - thank you. I've written it all down, and can now visit the GP armed with some real information, rather than a vague list of symptoms. x

[shaws Administrator in reply to Dafttart100]

The NHS only do TSH and T4 usually. It is rare they will do the Frees. However, whatever the doctor wont or cannot do we have private labs which will do so.

It is a big learning curve.

[Dafttart100 in reply to shaws]

This is my first visit to this site, and yes, I agree, it's a HUGE learning curve! x

[Dafttart100 in reply to shaws]

When you say 'we' have private labs, how do I access this please? And if the results are 'high' (indicating a problem) but the GP still isn't interested, how do I go about getting the correct treatment (without resorting to self medicating...)? x

[SlowDragon Administrator in reply to Dafttart100]

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

Vitamin levels often we can and must supplement ourselves as NHS won't

Gluten obviously we can and must sort ourselves

If dose needs increase then with help from here as to what documents to take in can often get GP to increase

Other things to consider afte getting dose and vitamins correct

Testing for DIO2 gene - not available on NHS

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

[shaws Administrator in reply to Dafttart100]

This is a link and we have two labs, Blue Horizon and Medichecks. They do postal pin-prick tests. You have to be well-hydrated a couple of days to make blood easier to draw.

Medichecks have a Thursday special price

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

You need TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

GP should test B12, Vit D, iron, ferritin and folate.

The thyroid tests have to be at the very earliest possible, fasting etc as stated above.

Once diagnosed we can discuss medication. These are accredited labs so your GP should take note of their results.

[Dafttart100 in reply to shaws]

Thank you. Very helpful. x

[Heather561]

Hi Dafttart 100

Cut out flour (bread, cakes, pies, etc) from your diet. Only cook with coconut oil & butter. NO processed foods. Eat meat, eggs, fruit, veg & whole milk.

This diet is being recognised more & more.

I'm proof that it works.

Good luck.

[Dafttart100 in reply to Heather561]

Thanks Heather - that's going to be hard, but I'm determined to give it a try. x

[Heather561 in reply to Dafttart100]

I saw a result after about 4 days. I went gung-ho at the diet & got headaches for a day or two. I should have changed the diet slowly. I started it last november so been on it almost a year. I found a book online & I have my old self back. If you can source bones from a good butcher, not supermarkets, make bone broth, freeze it in portions & have it with evening meals containing meat.

Please check diets for under active thyroid online. Some sites say there is no such thing but there is.

I was unwell for 5/6 years.

[Achilles_Pain]

As you're in the UK you should also be able to register to see your medical details online ("Patient Access"). It takes a few minutes to complete the form and get the access, though I believe some surgeries aren't set up for it yet. You won't be able to see everything, but test results you can see. This way you can see your results without the need to make an appointment to see your GP or ask the receptionist - mine usually appear the following day, though it takes a little longer over a weekend if my blood is drawn on a Friday.

Next time you're passing the surgery go to reception and ask about it, and some allow you to apply online from their website.

[Dafttart100 in reply to Achilles_Pain]

Great idea, thank you. x

[thyr01d]

If your TSH result really is 100 in your lab's range of -0.5 - 10 which seems to be a common range, you need help fast. At >95 the endocrinologist I saw told me I was at coma level - it can be very serious.

[silverfox7]

Welcome to the forum sorry you aren't feeling well but I'm sure with your resultshelp will be given. It isa steep learning curve and recovery can take time-we ant alter that and it's very unwise to try and cut corners-one thing that is likely to do is set you back a bit. So patience is needed and a greater understanding on how it works but you can literally learn as you go along! For the moment ignore try this or you must take that as it's far too soon to. E looking at alternatives. Many are fitcand well but you don't tend to hear about those as they don't post on hear with problems.

So I very good habit to get into is to always ask from a copy of your results and ranges. The ranges differ from lab to lab so without them we would just be guessing. Medication, when first started is a low dose to get our bodies used to it and then it's slowly raised until you are on the correct dose for you. Testing is repeated every 6-8 weeks till you reach your goal and increments are done in 25 mcg. So also useful to do a disry of events with dose readings and how you are feeling.

It takes a while to notice a difference with your first meds and later increases as the dose slowly builds up so you may notice a difference between 1-2 weeks but it takes 6 weeks to fully get to its potential hence the retest in 6-8 weeks. There are also other 'rules' to follow so you get maximum benefit so roses can be found on the Thyroid Uk site. They run this forum and are also recommended by NHS Choices. Shout out if a thing you don't understand, we are here to help.

[Dafttart100 in reply to silverfox7]

Thank you so much. Was feeling very well looked after, but a bit 'bombarded'. I'm off for a few days holiday, then when I get back, I'm going back to the GP and will start again - keeping records and notes this time. Thanks for putting it into perspective for me. x