Test results and advice

I am wondering if you can help. Recently had to change GP due to house move and the one I see has been very good t an extent. Today heard from a different one who was no use. I had requested certain blood tests but it seems these are the only ones they did.....managed to get a copy.

Serum free T4 level 12.1 pmol/L (12.00-22.00pmol/L

Serum TSH level 10.2 mu/L (0.27-4.20mu/L)

Serum vitamin B12 442ng/L (197.00-771.00ng/L)

Serum folate 6.1 ug/L (1.90-25.00ug/L)

My TSH was up in the 60’s 7 months ago, then 3 months ago 21.1.

Five days ago we upped Levo Fromm 100 mcg to 125mcg but if I want any of my family to carry on talking to me have had to drop it again, as it completely changes my personality, and causes an internal tremor. I have tried many brands and they all do the same. I am currently on TEVA which I know many don’t like but I am gluten and lactose intolerant and they seem to be the best of a bad lot. I have tried NDT , once again it completely changed my personality. (What’s that all about?)

If I have gluten I lose the feeling in my arms and they literally go completely numb, I constantly have an internal tremor. Lactose rips my stomach to bits. The endo keeps saying I’m going through the menopause, yet only last month my periods seem to have restarted????

17 years ago I had RAI. Three years ago I had a couple of OD operations for TED. Does anyone have any ideas of what I can try next. If I exercise it completely and utterly floors me, and yet as we all know, the medical world just seem to Pat you on the head and send you on your Merry way?

I would be so grateful for any advice that you can give. Today is a lay on the floor, hide in the cupboard day.

[Hidden]

I also meant to ask in the original post but had absolutely no brain power yesterday, what are the tests I should be asking the GP for. I feel that next week I might be able to tackle them a little bit after another couple of days of straightening myself out? I know vitamin D is one?

[pennyannie]

Hello Tahero :

I too have Graves Disease and had RAI treatment back in 2005 and became very unwell some 8 years later and found myself on here looking for answers as nothing was forthcoming from the conventional NHS route.

I too have TED, caused by the RAI treatment but not considered " bad enough " for treatment and I'm sending a big hug as the mental, emotional, and psychological impact of this disease is rarely discussed or understood.

RAI is a slow burn but ultimately the assumption is the dose was right and your thyroid part destroyed and burnt out : I think it's more likely that the RAI has totally burnt out your thyroid in situ and that it is likely that you now need full spectrum thyroid hormone replacement.

RAI can also be picked up by other glands and organs - to a lesser extent - and I leant all this through reading Elaine Moore's first book Graves Disease - A Practical Guide : Elaine has Graves, went through RAI around 20 years ago, and finding no relief with her continued ill health, and being a medical researcher, started her own own research into this poorly understood and badly treated auto immune disease.

She has written several books, one on Graves Ophthalmology - and has a very comprehensive well respected website offering an open forum, much like this platform, where Graves patients and their families ask questions and receive help and support.

Primary hypothyroidism caused by RAI is said to be more difficult to treat :

RAI is also known to trash vitamins and minerals.

We need optimal vitamins and minerals to assist our bodies convert the T4 into T3 :

So, the blood test you need as your first step to sorting out all of this is a TSH, T3. T4 and antibodies, inflammation, plus ferritin, folate, B12 and vitamin D : There are private companies on the Thyroid uk website who can do this for you should your doctor decline and some offer a nurse home visit so you don't need to go anywhere to get this crucial information actioned.

This is where I started around 5 years ago, having spent over 2 years going around various NHS outpatient departments looking for answers, but finding no help of any consequence, but for a low ferritin level.

Once with the results and ranges start a new post with all the information as it's also about where you are in the ranges that gives you your wellness.

I have been self medicating with NDT for the past 3 years. and so much improved it simply defies understanding of the NHS treatment option being T4 only :

I also take adrenal glandular and the vitamins and minerals detailed above to maintain my core strength at optimal levels so to support my whole body.

[Hidden in reply to pennyannie]

Thank you so much for your reply.......I tried the NDT. It was very strange, it just made me aggressive, verbally as opposed to physically even on a quarter of a grain. Tirosint Levo did the same and so do Actavis, and many other brands if raised above 100mcg. They then said I was going through the early menopause yet now that the levels seem to be slowly coming back into line my periods have restarted. I’m 44 by the way. All this started when I was 26 with the birth of my daughter though all of my maternal line has thyroid problems. Mine (and I) completely went bang at that point! I was really hopeful with the NDT but just could not tolerate any of it, as in the past week the rise from 100 to 125 and what it does psychologically is incredible. I’m like a different person. In fact being truthful, completely and utterly hateful to those I love (which I would like to think isn’t my true nature). I am going to try and speak to other GP as though she said she was far from being an expert, she said she was willing to learn and find out. Where as the endo told me to stop taking the medication (which I did and ended up with a TSH of 68.8) and the other GP just said ‘I’m sorry, I can’t do anythIng to help, I’m not a magician. I’m simply a doctor. ‘ ........I left utterly crushed again. Sorry to go on, and thank you for your reply. I will note down the things you have said and speak to other GP. Thank you for your time. Xx

[pennyannie in reply to Hidden]

It is imperative that you are dosed and monitored on your T3 and T4 numbers and not your TSH - your feedback loop is broken and TSH gives a false picture of thyroid function.

You will need to start at square 1 which is getting the blood test as detailed - generally described as an " extra full thyroid + vitamin " package.

This is where I started and where we all have to start if we are wanting to get better :

It is not that NDT doesn't suit you, nor that you can't take T3 :

It is a question of a fine balance and fine tuning as there is probably imbalance of thyroid, vitamins and minerals.

No thyroid hormone replacement works well if your core strength isn't strong and solid :

I spent 2 years building back up my body core strength :

I now take 1 + 1/2 grains of NDT which equates to about 13.50 mcg T3 + 57 mcg T4 :

On the NHS I was dosed o 100/125 T4 and had no untoward symptoms for around 8 years and then everything went pear shaped - and I became very unwell, with mental confusion, reduced cognitive function and there are more details on my profile I'm not prepared to write out again here.