Help I am unsure what to do next

As advised here I got private bloods done with blue horizon.

I am now more sure than ever that my Mum's symptoms over the past months are due to low t3..My Mum had RAI in 2010 and has suffered on and off ever since.. she has muscle weakness, more recently cognition issues, constipation, anxiety with what seems to be almost post traumatic stress disorder as she goes over and over when she lost her ability to live a normal life, blames herself for making wrong decisions. Her hands are shaky and usually cold, she has no energy , stiff joints, sometimes sees shapes of things in front of her and is not half the woman she once was! Not to mention a constant nerve type pain despite having MRI and CT SPECT scans which showed degenerative changes and osteoporatic type fractures we have no firm diagnosis. The issue I have is the endocrinologist has been downright unhelpful - despite a fluctuating serum TSH (a snapshot taken from last year as it been going on for a long while)

Serum TSH readings

7/3/13 5.2

17/4/13 18.84

20/6/13 19.04

26/7/13 0.29

The majority of the time she has been on 5 days 100 alternating 2 days 125 but is at present on 150.

The endo actually said she has very strange readings and a hard to control thyroid status. At our first mtg this year 2/6/14 (TSH 8.07 (0.35-4.94) T4 21.8) he said to take her stomach protector at a different time and he would monitor it and if no change would do further tests (using a different lab). At the next visit I was amazed he didn't do anything despite an even higher TSH and High T4. 15/7/14 TSH 14.73 (0.35-4.94) T4 19.0 - he just put her up to 150! And this is where we are at now....the latest results are below.

I just feel despair. The GP is coming out today to do a memory test as she thinks my Mum has dementia! I have tried to explain the lack of T3 but of course they don't want to know and just refer back to endos! They just think I am a neurotic daughter who wont face up to the fact her Mum has a mental illness! I want to make an informed choice of drs to see next, we have wasted far too much time and money on Drs who won't help. What are your thoughts about all this? Do you think these results and symptoms are connected and I have a valid point that I want further tests done. Any advice would be very much appreciated.

Blue Horizon (test date 24/9/14)

ENDOCRINOLOGY

THYROID PROFILE 2

TOTAL THYROXINE(T4) *174 nmol/L 59 - 154

THYROID STIMULATING HORMONE 1.54 mIU/L 0.27 - 4.2

FREE THYROXINE *28.3 pmol/l 12.0 - 22.0

FREE T3 *2.9 pmol/L 3.1 - 6.8

IMMUNOLOGY

THYROID ANTIBODIES

Thyroglobulin Antibody 25.6 IU/mL 0-115(Negative)

Method used for Anti-Tg: Roche Modular

Thyroid Peroxidase Antibodies 9.5 IU/mL 0 - 34

Method used for Anti-TPO: Roche Modular

[sandi]

Hi. Has your mum had Vit D tested? I had high TSH and high T4 and in retrospect I think it might have been because my vit d was very low. I so wish that I had got that sorted before even thinking about thyroid meds. At the time my vit d was about 10 yet my GP only put me on 400iu of vit d a day. With the increased knowledge I now have from here and the greater publicity about effects of low vit d that my GP has seen that issue is resolved - although I think I must keep a watch on it - BUT i so wish I had got that sorted first.

[Hidden in reply to sandi]

Thanks for the advice. I took a snapshot on my phone....of some recent bloods whilst in hosp with my Mum last week and all I can see is vit d 61 - b12 254 - does this mean anything?

[shaws in reply to Hidden]

I've just seen this. Again far too low. B12 is horrendous and deficiency alone on this Vitamin B12 (which is really a hormone) is so low and can give your mother symptoms of dementia alone. It can also cause Alzheimers plus lots of other problems, pain etc. etc. I could go on. It would be in the 'normal' range but if we are over 60 we should be at least 600 if not between 1,000 and 2,000. We cannot overdose as excess is excreted. GP may not give injections but your can buy Sublingual Methylcobalamin Tablets from Amazon and take one a day. Your GP should also prescribe Vitamin D for your mother as it should be between 70 and 90.

[Hidden in reply to shaws]

Wow this is very useful - thank you! Have just check amazon and they are all in dollars - is it not available from the UK and is there only one strength?

[shaws in reply to Hidden]

This is an affiliate link to Amazon for which Thyroiduk get a very small commission on anything you buy:

healthunlocked.com/thyroidu...

This is the link for B12. I think I would get 5000 to start:-

amazon.co.uk/s/ref=nb_sb_ss...

Any B12 must be methylcobalamin:-

naturalnews.com/032766_cyan...

[Hidden in reply to shaws]

Just wanted to add I also have a snapshot of feratin levels from the bloods last week 92 and folate is 5.5

[shaws in reply to Hidden]

If you have the ranges for these two tests it will be helpful as labs differ. Someone who is good with blood ranges will respond.

[Hidden in reply to shaws]

I haven't got the ranges unfortunately, i only took a photo quickly - i thought they might come in useful! Just called the endo and spoke to his secretary - i explained i had private test results and wanted his opinion - reinforcing how concerned I am about the demise in my mothers mental and physical health. I also rightly or wrongly stated that if he didn't feel it necessary to treat her, we would find another doctor! He isn't going to like us for that as I think my previous emails to his private secretary when my mum first started on this journey got his back up and he came back with abrupt replies that he 'really did not think that the endocrine issues are paramount and we are in a situation of fine tuning only' I doubt he will entertain her needing T3 especially as I have got the blood tests done independently. Interestingly the results for T4 from Blue Horizon were 28.3 yet the ones we had in a&e were 21.9 (taken the same week) are Blue Horizon usually accurate? Just preempting the next thing to come back from the endo.... Thanks for the very interesting link about the scottish parliament - that lady's story sounds all too familiar. This is such a great website and the people advising are making a huge difference to sufferers and their families. Thank you.

[shaws in reply to Hidden]

The problem we face is that the Royal College of Physicians and the British Thyroid Association all sing from the same hymn sheet i.e. one size fits all but it doesn't unfortunately. I hope your mother gets well soon. Lots of our members use Blue Horizon. I do know the TSH fluctuates over the 24 hours but am not sure about the T4 etc.

[shaws]

You are correct - doctor is wrong. Her T3 is far too low and he needs to prescribe some as she obviously isn't converting T4 to sufficient T3. Did your mother take levothyroxine before the blood test was done, or afterwards. Her T4 is on the high side and her TSH could be lower (although doctors think as long as we are 'in range' we are on enough medication.

Others who are better than me at bloods will respond. If your mother has stomach problems it may be that she has low acid as the symptoms are the same as high and whatever your doctor has prescribed could be having an effect which may have an adverse effect.

stopthethyroidmadness.com/s...

I doubt many people are told the after-effects that RAI can have and I think your mother is one of them. If we don't have sufficient T3 (our brain contains the most receptor cells) we cannot function as every Receptor Cell in our body (trillions) needs to have T3. Your GP has to at least prescribe some T3 to a reduced T4. In fact, I think if someones thyroid gland has been removed for whatever reason they should be provided with the full spectrum of thyrod hormones that our body would normally produce, i.e. T4, T3, T2, T1 and calcitonin but doctors are told not to prescribe Natural Dessicated Thyroid. False statements have been made by the British Thyroid Association about these medications which have been in use for more than 100 years. Doctors can prescribe on a 'named patient' basis but wont as they are afraid of losing their jobs. Never mind your mother being so unwell he is doing a memory test! Memory Test - so many members on this forum will tell you how much they forget 'brain fog' is another word as it is the lack of thyroid hormones. We have to find this out for ourselves. Some Endocrinologists are what one of our Administrators renamed some of them as 'Endonobs' as they don't know how to treat us.

They are far too happy to diagnose the clinical symptoms as not connected to the thyroid gland and prescribe some other medication for the symptom rather than an optimum dose of thyroid hormones. I think I would insist that the doctor gives a trial of T3 alone to your mother as (like me) she may not feel well at all of levo. He should start her on 10mcg as levo takes around 6 weeks to leave your body and then increase till she feels well. Again, the GP may be nervous but this is a link which you may find helpful anyway. So many people have been sectioned but in reality they had an undiagnosed thyroid hormone dysfunction and once this a 'name' is put on your medical record it is difficult to remove it.

web.archive.org/web/2010103...

[Clutter]

Jcoops, I agree with Shaws that your mother needs the addition of Liothyronine (T3) to a reduced dose of Levothyroxine. Thyroidless people often have difficulty converting T4 to sufficient T3 as they're unable to produce T3 in the thyroid gland.

In adddition to B12 her folate is low and I would recommend folic acid for 3 months. Ferritin is optimal at 70-90 and vitD 75-200. I'd supplement 5,000iu vitD3 for 6 weeks to build levels and then cut back to 5,000iu on alernate days.

[Hidden in reply to Clutter]

Thanks Clutter I have ordered the b12 and will look into getting what you suggest. The endo is on holiday (seems to have lots of these) so I have asked for his colleague to advise. As I have become used to having my hopes dashed lately I do not hold out much hope I will hear anything. Can you suggest what I should do if either I do not hear or they do not support any further testing. I have a list of helpful drs from louise but the only one near is actually the man we are due to be seeing and it is a little controversial why he got put on the good list - the patient had to take matters into his own hands and detox himself from t4 to prove he was right before the endo would listen. I presume its better to have a dr at least prescribing rather than take matters into our own hands.....

[Clutter in reply to Hidden]

Jcoops, re vits and minerals doctors seem happy with results anywhere in range whereas most of us are looking for optimal doses.

I hesitate to suggest self medicating in elderly people who may have complicated health issues but if you do decide to do this start with a very low dose of T3 (5mcg or 6.25mcg - a quarter tablet) initially and see how it is tolerated before increasing dose.

[Hidden in reply to Clutter]

Clutter sorry been a bit busy on here today with my questions!! Just one other thing. My Mum only realised she has osteopenia when a chiro caused compression fractures in her back. She was seeing him several times a week for the unexplained nerve pain she is still in now - possibly caused by the low B12 and T3 (I pray it is and we will see and improvement) It was only then that they did a dexa and put her on alendronic tabs and adcol. I am guessing the adcol isn't enough vit d to make a difference to her low reading of 61 despite them acknowledging it was a bit low they have not advised to up the dose. So should she carry on with the adcol and take extra vit d?

[Clutter in reply to Hidden]

Jcoops, adcal has vitD and calcium so I wouldn't take more of that in case her calcium levels go to high. VitD3 softgel capsules will be fine.

[Hidden]

do you think her t3 2.9 is low enough to be considered worth treating or will they make up an excuse as usual. Also if self medicating what should the level of levo be?

[Clutter in reply to Hidden]

Jcoops, I think raising her T3 would be beneficial. Your mother's FT4 is high so she is obviously not converting well. Reduce her Levothyroxine by 25mcg for every 10mcg T3 added. Initially try her on 5mcg T3 and if she tolerates it well raise to 10mcg after a week or two. Palpitations, tremors, fast pulse, diarrhoea are signs of overmedication.

[Hidden in reply to Clutter]

thank you Clutter. Where do I get T3 from any advice?

[Hidden in reply to Hidden]

Hi I have just collected the most recent blood tests done on my mother...

Serum folate 5.5 ( 3.1-20.5)

Serum ferritin 92 (16-204)

Serum vit b 254 (187-883)

Thyroid peroxidase 5(<75)

Serum sodium 133 (136-145) low

Serum gamma gt level 37. (9-36) high

Have rec'd b12 and started it today. My mother is worse than ever today with slight temp of 37.2... In pain with strange theories of how she got this and what is causing it! I am crying out for help and have put calls into gp and two endos ( usual one on holiday and other not got back to me.) Feel despair.