Where do I go from here?: Hi everyone. This is my... - Thyroid UK

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Where do I go from here?

mel500 profile image
7 Replies

Hi everyone. This is my first post and I'll try to keep it as brief as possible. After many years of poor health, I was diagnosed as hypothyroid in 1996, mainly due to the excellent work of Diana Holmes and I've been on 150mcg of thyroxine more or less ever since. In 1997 I saw Dr Skinner and he diagnosed "Cushing's Disease". I started on steroids but they affected me very badly mentally (I thought I was going to be abducted by aliens!) and I had to come off them. My GP said that this can be a side-effect of steroids but it was unusual in such a low dose.

For the next few years I tried various things to improve my health including natural progesterone cream (which I still use), dietary changes to cope with my increasing hypoglycaemia and reflexology which made me feel so ill, I could barely stand-up. The reflexologist said that in fifteen years of practice, he'd never been able to distinguish between the kidneys and the adrenal glands but in me he could.

By now, I was beginning to conclude that my problems were not just with my thyroid but also with my adrenal glands. This was confirmed by Dr Peatfield in 2011. At his suggestion, I took an adrenal stress (saliva) test and the results clearly showed adrenal stress. Dr Peatfield's opinion was that I had a "conversion" problem with the thyroxine and that my high levels of T4 and low levels of TSH, together with a high pulse rate, only confirmed this.

Dr Peatfield advised taking Nutri Adrenal glandular tablets. Unfortunately, there was a bit of a communication problem between us and I didn't realise that I needed to come off thyroxine before taking the glandular tablets. As a result, even after taking just one and a half tablets over two days, I became very "hyperthyroid" (and possibly had an adrenal surge), resulting in me collapsing on the hall floor and having to call the paramedics. I had extreme hyperventilation and severe palpitations which were very frightening indeed.

After I had recovered (some six weeks later) and on Dr Peatfield's suggestion, I tried Co-Enzyme Q10 which also made me feel very ill, then high doses of Vitamin C over several months which had no effect at all.

In 2013, I had a bit of a breakdown after losing my closest friend to cancer (my third major bereavement in six years) , experiencing severe financial difficulties and having an infected cyst on my head, all at the same time! I had to consult my GP (even though I'd pretty much given up on the NHS) and eventually agreed to take anti-depressants which I'm still on. In March 2014, when I was recovering, I spoke to my GP about my long-term health problems. She said she was "sceptical" (surprise, surprise!) about Dr Peatfield's diagnosis but at her request I agreed to have some blood tests done, including my annual thyroid test. The results from June 2014 are as follows:

Thyroid: T4 28 and TSH less than 0.05 (about the same as last year but T4 is higher)

Cortisol: 433 (range is 138-620)

Sugars: "normal" (no stats)

As well as 150mcg of thyroxine, (and currently 20mg of Citalopram), I am also taking immunovite, tyrosine, chromium, Vitamin C (1050mg) a multi-vitamin and Mega-B50 every day. My most severe symptom is still the hypoglycaemia which is extremely debilitating despite my attempts to manage it as best I can.

At the moment, I am wondering "Where do I go from here?" I'm quite convinced that the main culprit is the adrenal glands but it seems that they are either so sensitive or so stressed that whenever I try to do anything that affects them directly, the side-effects are too much to cope with. I feel that the only thing I haven't really tried properly is homeopathy and I'd be interested to hear what experiences other people have had with it. Any other suggestions would also be very gratefully received. Many thanks.

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mel500
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Sparklefizz profile image
Sparklefizz

Hi Mel 500, Your health history sounds similar to mine and I want to give some thought to my reply first, so will write properly later. Hypoglycaemia has been a huge problem of mine but I have pretty much solved it myself (the NHS being useless) and will need to put it together clearly in order to tell you.Your Free T4 of 28 surely means your thyroid has become OVER active, doesn't it? I'm sure someone will come along shortly and pick up on that, but I am surprised you're still taking 150 mcg. Thyroxine with such a high T4.

My thyroid became hyper when I was being prescribed 200 mcg Thyroxine and my Free T4 reached 32. It was only when I collapsed with Atrial Fibrillation and it was thought I was having a heart attack that my high T4 was noticed. It's a long story, but it sounds as if what you call your "adrenal surge" was very similar. My Thyroxine dosage was reduced to 150mcg and then 100 mcg over a week or so, and I felt absolutely terrible. Years later I am now on 75 mcg. It took me 2 years to recover from the "Thyroid Surge" but I also have M.E. which didn't help.

Hypoglycaemia is extremely debilitating and was wiping me out every day. Have you tried handling it with diet?

Take heart, Mel, I can help you sort that, but I am not sure what's happening with your thyroid.

Sparklefizz

love2 profile image
love2

Hi there! I'm up early- it's 7:38 am in Ireland and I've been awake since just after 5. This isn't normal for me. I am thinking I may be swinging to hyper from hypo due to hashimotos and I am not on any thyroid hormone currently. I had a lot of identification with your story. I too had a mis-communication with Dr Peatfield back in 2007 . I'm not on form right now to get into details- just wanted to say thank you for sharing, you really have been though the ringer!! I find these forums wonderful to come to when I don't know what else to do. I feel so much less alone reading your post. I tried homeopathy and it did not work for me at all. I had severe reaction to it- it is not for everyone but it may be good for you. So far in my journey one of the best things I have discovered for helping my adrenals and stress level is The Healing Code by Alex Loyd. Just get the book and take it from there. You can also view a you tube video to see how it's done- very very easy and I have had remarkable healing of memories that used to really upset me when I thought of them- I believe all of this baggage was stressing me for years. I love it cos its free and when I started doing it I was at my wits end with my physical and mental health. I'm not cured but I can manage for today and even have amazing peace at times despite things not being perfect. My tip: if you start doing it do it for more than the suggested 6 minutes- do it for 20 or 30 if you can. In my case this became very easy after my first few times because I began to get into such a peaceful state I didn't want to stop!

Wishing you the best x

rosetrees profile image
rosetrees

Hello Mel, I took would say you are over medicated on thyroxine. I'd try reducing a little and see what happens, then if you don't get worse reduce again. Try reducing until you start to feel hypo and then adding in a some nutri thyroid.

Adrenals. NAX can be hard for some people tolerate. Regular Nutri Adrenal is easier. I had a contact who started on 1/4 of a nutri adrenal tablet and built up slowly.

For me hypoglycaemia was a big problem, but it has reduced hugely now I'm getting my adrenals under control. It takes time and experimenting. Knowing what I do now, and in your position I would work on reducing my thyroxine, adding in nutri thyroid and adding in nutri adrenal as slowly as necessary to allow you to build up the dose. It isn't a competition or a race. If you can only build up 1/4 of a tablet every few weeks, then do it that way.

You could try adding in some ginseng. For me, historically, that was the only thing that worked. That was before I knew anything about thyroid and adrenals. It still works and I'm currently taking that, along with rhodiola and reducing the amount of hydorcortisone I take.

Be nice to your adrenals and build up their support slowly.

Sparklefizz profile image
Sparklefizz

Hi Mel

Regarding hypoglycaemia – I thought I was eating a healthy diet, but it certainly wasn’t right for me. I suggest you research GAPS – check out the GAPS website below and Dr Natasha Campbell McBride.

gapsdiet.com/GAPS_Outline.html

I bought her book and worked with it. Cut out processed food, and also gluten and dairy. There are other posts on here by people who have cut out wheat and gluten and felt much better for it.

Not only did I have hypoglycaemia but I became more and more intolerant to foods until in the end I could only tolerate 5 foods, water and weak green tea, and I had to live on those for over a year. My GP seemed unable to help. He referred me to a gastroenterologist but I had to wait 4 months for the appointment which was then postponed twice, and when I eventually saw him, he laughed when I said that I’d eaten an inch of cucumber and it made me so ill, it put me in bed for the rest of the day. I have seen him twice and he offers more tests but no practical advice or help at all. I was also referred to a dietician and had to wait 3 months for the appointment, only for her to tell me she didn’t know what to do with me because my case was too complicated.

I came out in despair, but then went online (what would we do without it???) and found Allergy UK, and from their forum I found someone had mentioned GAPS and the rest is history. I have sorted myself, I understand why I have got into this mess. I am still a work in progress but I am getting there, and it is all down to GUT FLORA – ie. The good bacteria in our guts.

I now understand that we can even be born without the necessary bacteria, as explained by Dr Campbell McBride in GAPS. It was also mentioned on the Horizon programme last week about allergies. All these illnesses and ailments are connected to not having the correct bacteria in our gut. We can be born without the necessary gut flora if we have a caesarean birth or we are not breastfed, we can kill them off with antibiotics, steroids, the Pill, stress, etc., we can feed the bad bacteria with processed and junk food and too much sugar and yeast, so that our insides become like a brewery and the bad bacteria take over and give us horrendous side effects - hypoglycaemia being one of them.

A number of symptoms I thought were due to being hypothyroid were due to not having enough good bacteria in my gut. Many doctors and scientists are now saying that the gut is our second brain (we talk about “gut feelings”), and that the gut controls everything. If we can get our gut healthy and keep it that way, our general health will improve in leaps and bounds. I reckon my gut is now the healthiest it’s ever been since my life was saved with antibiotics aged 6, but my health has suffered overall ever since.

Good luck, Mel. Hope this helps…. And hope it helps anyone else who’s reading it, just like coming across GAPS on a forum has helped me!

I hope this is enough to help ..... sorry, I have to dash as got a busy morning.

Sparklefizz

faith63 profile image
faith63

I had heard Tyrosine is not good to take..according to many naturpaths and i can't remember why. This could all be thyroid..it appears, that you could have a t4 Toxicity. On too much. It would help if you post ranges. Was that a free t4? Your t3 levels could be low causing many issues as well.

faith63 profile image
faith63

Adrenal glands, like everything else, need proper thyroid hormone..t3..to function properly.

mel500 profile image
mel500

Thank you faith63, Sparklefizz, rosetrees and love2 for taking the time and trouble to reply to my post . It was really appreciated and has given me lots to think about and follow up. I wish you all the very best with your own health journeys.

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