Tests available from Genova Diagnostics, Adrenal Stress Index (4 Saliva samples throughout the day); Thyroid Plus (shows peripheral thyroid function, ask for RT3 to be included); Thyroid Hormones 24 hour Urine; There is also a Metabolic Analysis Profile (amazing). You will though, need a practitioner for them to proceed.
Initially it was 'live blood analysis' that showed up that I was not synthesising my carbs, protein and fats, and my enzymes and oxygen were low. I then had to go away and work out what that meant. - Not converting!!!!!! - My suspicions were confirmed when I went to Dr Peatfield, he explained everything. I was toxic with T4 Levothyroxine and adrenals exhausted.
Live blood practitioners cannot diagnose, they can only tell you what you are deficient in.
I was also B12 deficient:- After being on Hydroxocobalamin injections for years. I now source for myself Readisorb methylcobalamin active B12 spray. What an incredible difference.
Axis Shield (Dundee) are in negotiations at present to try and get their more efficient Active B12 test into the NHS.
Vitamin D helps with the T4 to T3 conversion, and we Scots tend to be deficient in this.
So sorry we forgot to say quite a lot at parliament, we couldn't tell them everything that went wrong with us because we would have been there all day, also the conditions this problem goes on to cause, are too many to mention. Can't wait for the evidence to come back from Dr Lindner (hormonerestoration.com). Have a look for yourselves in the evidence section of his site.
Please let the Scottish Parliament know your personal experiences by writing to them. petitions@scottish.parliament.uk Petition number PE01463
They are honestly listening, and taking it very serious. This is a chance for us all to join together world wide. Much love to you all Sandra x
I'll second that Sandra, they are listening and people should write to share their experiences. I look at Sheila's reply from Dept of Health and it makes me so mad. They SAY that doctors should not rely totally on blood tests but that is exactly what is happening.
Everyone who participated in bringing this issue before the Scottish Parliament have to be congratulated.
We will hold a bated breath and hopefully something will come out of it, despite the BTA's and the RCoP's standpoint. They have to listen to the patients.
Lorraine and Sandra did a wonderful job in expanding the Committee's knowledge and were great.
As Dr Lowe said - those patients who are undiagnosed/undertreated can develop other serious illnesses such as diabetes, cancer and heart.
I'm one of the 3 petitioners. Sadly, I didn't make it to the Parliament as was not well enough through not getting proper diagnosis and treatment. But the girls done good And thank goodness our Parliament doesn't wait for millions of signatures before it addresses important issues.
I felt emotional watching the debate. I get so tired and frustrated with resourcing information on this terrible illness we all have in common. I am being sent to see a CF specialist on Tuesday, live in hope he will offer me some help. X
I watched Sandra and Lorraine and was so impressed, you have done so well, and it may really lead to change. One of the things the Petitions Committee have said they will do is write to SIGN (Scottish Intercollegiate Guidelines Network) so I have written to the Committee pointing out that SIGN's head injury rehab guideline due out 15 March does not say a word about pituitary damage after head injury, which happens to 30% of severe injuries and can happen after mild head injury too. A substantial proportion of these people have thyroid and adrenal deficiencies, so by not mentioning it SIGN are condemning them (plus all the other people with different hormone deficiencies) to a long, long search for diagnosis, similar to what Lorraine and Marian and Sandra went through. SIGN refused to include just two sentences about pituitary damage, even though 50 consultants and charities wrote to them requesting this. Lorraine was right to pinpoint the lack of information available for medics. This is a glaring example, and it's hard to see it as accidental.
I wanted to leave a copy of my letter on the Scottish Parliament website which I thought was something you could do, but the link seems to be broken. I am posting it here in case anyone wants to follow it up.
8 February 2013
Dear Mr Stewart
Today I watched the video of the presentation of Petition PE01463 by Sandy Whyte and Lorraine Cleaver, and I note that the Petitions Committee has undertaken to write to SIGN asking for their help to further the effective testing, diagnosis and treatment of adrenal and thyroid disorders.
Although I do not live in Scotland, I have been in extensive correspondence with SIGN about their forthcoming guideline on rehabilitation after brain injury, and I therefore hope you will be kind enough to read my letter. I believe SIGN should include in their guideline information about the substantial risk of pituitary damage after head injury, but despite my correspondence, and despite a letter signed by 50 consultants and charities asking them to make the modest change of including just two sentences alerting medical professionals to the condition, they have stoutly refused. See bmj.com/content/335/7622/71... for a letter to the BMJ protesting at their refusal.
You will see that this action of SIGN’s is highly relevant to PE01463. The incidence of post-traumatic hypopituitarism (PTHP) is 50 per 100,000 [1] which equates to 2,600 Scottish patients a year. The breakdown into the various hormonal deficiencies (growth hormone, ACTH, TSH, LH, FSH, etc) is unclear, but in a recent large study of 246 head injured patients[2], 12% were deficient in TSH, 4% had hypocortisolism and 1% had confirmed ACTH deficiency, which may give a rough guide. If we apply these percentages to the 2,600 Scottish head injury patients, the numbers come roughly to 300, 100 and 25 respectively, which need to be multiplied by at least 30 to give the prevalence of conditions which have remained undiagnosed for decades. This sum indicates that there may be around 10,000 undiagnosed patients with thyroid and adrenal disorders caused by head injury, in Scotland alone. If SIGN persists in its decision to suppress the information which would enable doctors to test, diagnose and treat them, these 10,000 people may well undergo, or continue undergoing, the same long, traumatic search for effective treatment experienced by Marian Dyer, Sandy Whyte and Lorraine Cleaver – or maybe never get diagnosed at all.
I would like to add at this point that PTHP is covered in German, Canadian and US head injury guidelines, and that the UK Army routinely screens head injured soldiers for pituitary dysfunction. There is no possible excuse for SIGN to omit it from their guideline.
My interest in this matter stems from our son’s suicide four years ago, which we believe was related to undiagnosed post-traumatic PTHP. It is for his sake that I would like the Petitions Committee to ask SIGN some hard questions about the brain injury rehabilitation guideline in its letter to them. I imagine that the Committee’s letter, and SIGN’s reply, will be available for public scrutiny in due course.
With many thanks for your attention.
Yours sincerely
Joanna Lane BA Hons (Oxon)
References
[1] Fernandez-Rodriguez et al, Hypopituitarism Following Traumatic Brain Injury: Determining Factors for Diagnosis, Front Endocrinol (Lausanne), 2011; 2:25. This paper whose co-authors include internationally recognized endocrinologists Prof Kelestimur and Prof Casanueva puts the incidence of post-traumatic hypopituitarism at "around 50 patients per 100,000 individuals per year, which results in a high number of patients affected." ncbi.nlm.nih.gov/pmc/articl...
[2] Berg, C et al, Prevalence of anterior pituitary dysfunction in patients following traumatic brain injury in a German multi-centre screening program, 2010 Exp Clin Endocrinol Diabetes, ncbi.nlm.nih.gov/pubmed/196...
Sorry to get Lyn's spelling and title wrong! Won't happen again.
Goodness Joanna! That's just shocking. And not only that, it has just made me realise that most of my problems likely stem from a severe head injury I had, just before my Graves set in. Please try the link again to send this very important letter. The site had problems today but I think it is fine now.
in reply to
Just a pointer, if you want to reply to someone in particular, you have to make sure to click on 'reply to this' otherwise they will not get an email letting them know that you have responded.
I'll do it straight away. I'm so glad if the head injury connection has helped. Have you had your other pituitary hormones checked, I think a proper across-the-board check of all the pit hormones would be a sensible step i.e. growth hormone and luteinizing hormone and follicle stimulating hormone too. And sometimes pituitary damage causes diabetes insipidus if the posterior part of the gland is affected.
And I have just done it again! See my reply below x
Hi it was my fault I forgot to reply in the right place Joanna, it was late.
I have just this morning been forwarded an email you marked urgent on 5th Feb at 8am to me, Sandra and MArian at TPA. As we suspected, many people think we wrote the petition with TPA but we didn't. I am sorry we were not forwarded it in time as we would definately have made a point of mentioning it. I will pm you.
Reference to Joanna Lane: Thankfully you sent your email direct to Elaine Smith MSP on the 5th Feb regarding this subject, so it is in the right hands. Hopefully your concerns will be taken seriously by parliament.
We are aware of the consequences of brain injury on the endocrine system, in fact any trauma will have an impact.
As you know this is a huge subject and I could only refer briefly to PTSD through the child sexual abuse connection during the committee meeting. I really do believe that when this is all looked at by the appropriate people, parliament will be shocked. Hopefully they will be spurred into action. Wishing you all the best in your endeavours.
Thank you for your good wishes and yes I too hope Parliament will be galvanized into action. Yes, PTSD is another can of worms. Hypopituitarism among soldiers is often misdiagnosed as PTSD. Fingers crossed there will be a change.
I really don't come on here enough. I'm only 20 miles from the Scottish Parliament and would definitely have turned up. Well done for getting them to write to SIGN. I used to be a peer reviewer for sign around another issue - lived in England then so I've lost touch. I think I will let them know where I am now and get involved again - maybe I can help in some way.
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And thank goodness our Parliament doesn't wait for millions of signatures before it addresses important issues.
Pre test help needed re: adrenal and hypothyroid
Scottish Parliament: Public Petitions Committee 05/02/13 VIDEO NOW AVAILABLE!!
