Confused after TSH of 0.25 in Dec, but 11.9 three months later

[Ahhan]

Dear All,

I would be grateful if anyone can throw some light on this:

My TSH was around 3.29 - 3.45 consistently for 3 years. My T4 was slowly dropping from 14 to 12 to 10.

My G.P. refused to treat me for a thyroid problem although I was feeling half dead and my antibody test came back positive and an ultrasound scan showed I had damage to my thyroid. I got a diagnosis of Hashimotos but they didn't want to do anything about it.

I went to Dr.Peatfield last March and started taking Nutri Thyroid and Nutri Adrenal Extra. Within 4 months I was starting to feel human again.

In Dec 2015 I had a test which gave me a TSH of 0.25 and T4 of 8. The GP was then worried my thyroid was over active and asked me to repeat the test in March 2016.

This test in March came back at TSH 11.9.   This seemed so unexpected I thought there must be a mistake and asked for a re-test. But this test only confirmed it.

My G.P. is now suggesting I go on levothyroxine.

I've been trying to get hold of Dr Peatfield to ask what this might mean and what to do about it but haven't been able to reach him.

Has anyone experienced anything similar?

Perhaps I should add that I hadn't altered anything that I was doing during this period and I'm still taking Nutri Thyroid and Nutri Adrenal. The only thing I changed was to stop taking multi vitamins after the G.P. asked me to cut them out.

[Steni]

I had heard that Dr Peatfield is one of the only doctors who believes in Natural thyroid are there others or is all this understanding only shared between sufferers? 

[crimple]

Unfortunately, NHS doesn't recognise antibodies (Hashi's) as being a problem. I started off as hypo and did get levo fairly early. After 5 years I developed TPO antibodies and asked GP to test me, the positive result was well above the top of the range. I was feeling and looking awful but no treatment was offered other than to continue with levo.

 I did my own research and went Gluten and lactofree, felt a lot better and a subsequent test showed my TPO's were well down under 10 . I have learned over the 9 years since I was diagnosed that the only way to feeling well is to treat yourself and know your condition, so lots of reading. There is so much help available from everyone on here. Hope things improve for you.

[shaws Administrator]

You are hypothyroid and the only prescription your doctor will give you is levothyroxine.

Unfortunately Dr P has been very unwell this past year and has had an operation I believe.

If you were able to contact him I believe he would suggest you begin taking a Natural Dessicated Thyroid Hormone as you are clearly hypo.

Can you leave a message and I think he has a secretary who may be able to help/pass on a message.

You now need thyroid replacement hormones.

Regards

p.s. get a print-out of your blood test results with the ranges and post on a new question for more comments.

[Ahhan in reply to shaws]

Thank you very much for your reply.

I didn't know that Dr P had been unwell. I have left a message but I haven't heard back from them. I will keep phoning.

What has confused me about the results is the sudden change - on Dr P's regime I had gone right down to 0.25 TSH  (ref 0.3 - 4.4), which I thought was really good. But then out of the blue it shot up to 11.9 in less than three months. Which is a far worse result than I'd ever had all the years without treatment (maximum of 3.45).

Is it possible that taking the nutri supplements has actually made things worse?

[greygoose in reply to Ahhan]

Doubt it. You have Hashi's, and that's what Hashi's does. You get slowly more and more hypo, with a few hyper swings from time to time.

What you've needed all along are thyroid hormones. The Nutri range has no hormones in it, so whilst it hasn't done any harm, I truly doubt it's done any good, either. It might help people with a thyroid problem, but you Don't have a thyroid problem, your thyroid is actually quite healthy. What you have is an immune problem. And it's just going to get worse and worse until the gland is destroyed.

Taking thyroid hormone replacement now, can delay the destruction IF you're on a dose high enough to suppress your TSH. But doctors Don't like that. Apart from that - and going Gluten-Free - there really is no treatment for autoimmune thyroiditis, I'm afraid. So, best get taking the Levo now.   

[Ahhan in reply to greygoose]

Thank you very much for your response.

I know the nutri range aren't supposed to have any hormones in them, but I thought in reality they did. Do you think it would be ok to stop taking them straight away and make the switch to Levo?

[greygoose in reply to Ahhan]

As far as I know, yes. But I Don't have any first-hand knowledge of them.

[Ahhan in reply to greygoose]

Thank you.

[shaws Administrator in reply to Ahhan]

I think you should get a new blood test from GP for your thyroid hormones and that would consist of TSH, T4, T3,Free T4, Free T3 and antibodies. Get the very earliest appointment and don't eat before it. You can drink water. Get a print-out the tests with the ranges and post for comments. If your GP wont do the tests you can get private ones from recommended labs and you get a small discount if you quote the TUK code.

If you were on thyroid hormone replacements you'd take it after the blood test never before as it skews results.

[Ahhan in reply to shaws]

Thank you for your advice. I will ask.

[shaws Administrator in reply to Ahhan]

Just for info:-

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

[Ahhan in reply to shaws]

Thank you.

[Hellsy]

I think a good route would be to begin Levo and ask for a referral to an Endocrinologist. You can then see how you are on Levo and get treated straightaway.  Then with the Endo if you don't fully recover on Levo you can request a trial of NDT. My Endo was very reluctant and preferred me to add T3 rather than use NDT but I was adamant I wanted to at least try NDT and he agreed. My husband takes Levo and does great on it but is on 150mg so that his TSH is 0.33. 

I have heard of people who fully recover by following certain diets and health regimes with the supervision of a qualified Practitioner, never taking thyroid meds at all. That's probably when it's caught early enough but you could definitely look into it. 

[Ahhan in reply to Hellsy]

Thank you for your reply, that's very helpful.

[Hellsy]

You're welcome. Should have said, I'd wait to ask for a referral to Endo if you feel you need it. Many of us need NDT and as your antibodies were activated NDT would arguably be the best route. 

You could even ask to see an Endo first but I'd be very suprised if your GP would be happy with that if you hadn't trialed Levo first. You could see an Endo privately, especially if you have health insurance. I saw mine privately and the insurer was ok with it because I was having ongoing symptoms. Good luck!

[Ahhan in reply to Hellsy]

Thank you. I did see multiple endos during the period when I was feeling dreadful but had a TSH of <3.45 and didn't have a great time with them. I was told I was depressed, was just a middle aged woman, had a sleeping problem, etc (they completely disregarded the results of the ultrasound even though they had ordered it).

So I must admit I wasn't in a terrible hurry to be referred back to them. But I guess things will be different now that the TSH has shot up so much. I will bite the bullet and go back!

[Hellsy]

I read a book called Recovering with T3 by Paul Robinson and this was incredibly helpful in educating myself on the physiology of thyroid issues. I'd highly recommend reading that because it can make you feel.much more confident within yourself about what you need. If you then approach appointments assertively I think they are more likely to listen. It's a hard line to tread because its important to  (at least appear to) respect them but also to respect your own understanding and stand up for yourself (imo). My Endo was dismissive of online forums etc but within me I knew what I knew and gently pushed for the outcome I wanted. I think it's good to use the term "trial' as it's harder to reject a request for a trial. Also, I.like the term STTM use which is 'patients have found' if you use that again it's hard to argue with it

[Ahhan in reply to Hellsy]

Thank you again for your help. I've just placed an order for the book you recommend.  And yes, I can see that's good advice - I will commit 'trial' and 'patients have found' to memory!

[Hellsy]

That's great, I'm sure you'll benefit from the book. If you ever use NDT or T3 only as described by Paul, you can join his FB group and receive lots of support

[Ahhan in reply to Hellsy]

[Juliatom]

My tsh  dropped from 5.5 to 0.01 after supplementing with  1-nutri thyroid & 1-NAX with levo 50mcg.

But hypo symptoms without levo 50mcg,only nutri supplements can't support.Why GP wants multivitamin to cut off ?.

[Ahhan in reply to Juliatom]

Thank you for responding. My B12 was coming up as very high so my gp asked me to stop taking multi vitamins to see if it brought it down (which it did). I'm now taking them again.