Re: Dr Peatfield Thyroid hormone resistance and getting treated right

[Guest guest]

HI kombucha64

Welcome to our forum and I hope you get the help and support you need.

However, I would first point out that we do not allow members to hide their email address on this forum, though I appreciate that give people this option. Can you please re-register using an email address. Hiding your email address means you cannot receive messages and you cannot receive special notices or newsletters from us. I would appreciate it if you could do this as soon as possible.

I did a random google search on thyroid etc and posted my thoughts andfeelings on a forum that had the group and site owner contributingthat I decided to seek some answers here since it looks a very activegroup

This group is extrmeely active, and this month alone we ahve received almost 2200 messages. Unless you don't mind your inbox getting full every day, if you opted to receive Individual Emails, you may be happier receiving a Daily Digest where you get up to 25 messages in 1 email or opt to receive no emails and read and write direct from the website. You can change your option on the Home Page of this forum website by clicking 'Edit Membership' just above the broad bar at the top of the page.My thyroid results are unusual to say the least and any advice wouldbe appreciated. I think this is a better place to post it!This is my situation...I had a tsh of 8.23 hormones in range and diagnoses compensatedhypothyroidism last year from an endocrinologist, I am in the uk

TSH is insufficient to reach a diagnosis, we also need to know the numbers and the reference ranges for your Free T3, Free T4 too and did you have your blood checked to see whether you had antibodies to your thyroid? Compensated Hypothyroidism is quite common. The hallmark is that of an elevated TSH concentration, with normal or only slightly reduced thyroid hormone levels. Were you actually suffering any symptoms or showing any signs, or did you ONLY have a raised TSH. The problem is I was aware of the acceptable levels of thyroid hormonein the rest of europe and america due to all the raging debate outthere over what is "normal" and with the problems I have personally,it gave me a nervous breakdown on top of things

Unfortunately, what is considered 'normal' TFT's elsewhere in the world does not help us here in the UK. Many GP's and endocrinologists used to believe the reference range for their particular area was 'normal' until the BTA et all re-jigged the reference interval to 0.5 to 10.00 and now it appears very few doctors know what is normal and what is not.I seen Dr Barry Peatfield who I had communicated with several timesand he recommended Isocort from the USA and two bovine glandulars fromNutri, one adrenal and the other thyroid that don't require prescription

Had you had a consultation with Dr P at this stage and did you have the results of either a NHS short synacthen blood test or a 24 hour salivary adrenal profile. The adrenal and thyroid supplements do not require prescription because they do not contain thyroid or adrenal hormones. Anybody can buy these over the counter, but there are good one's and not so good ones, and Nutri have an excellent reputation and we highly recommend it.I stopped the glandulars when they ran out and had my thyroid bloodtest repeated privately and had a TSH over 9 and raised ft4 and ft3

As you say your endocrinologist diagnosed you with "compensated hypothyroidiosm" - do I take it that he did not give you a prescription fot L-thyroxine?I carried on with the Isocort but stopped at the turn of this year.Dr Peatfield had discussed with me and at this point recommended Itake Cortef and follow it up with armour. The problem is there is noblood cortisol evidence of an adrenal problem with acth, cortisol andstim test although my response was a bit blunted a lot of things cancause this and I started high. It is a stressful condition!

It is highly unlikely that you would ever get a blood cortisol result showing you had low adrenal reserve with ACTH - this is because it is used to test if you have 's disease, and 's disease only. It does not recognise the shades of grey between normal adrenals and severely compromised adrenals - and as the old saying goes, the Stim test would even make a dead donkey kick. The best test is the 24 hour salivary adrenal profile which will show where your cortisol and dHEA levels lie at four specific times during the day.I couldn't get Dr Peatfield to communicate with my GP although I waskeeping him informed aswell. Everything was "in due course" that wasas good as the Endocrinologist wanting to just repeat tsh every 3months obsessing over the number 10 on a .4-4.5 range

If you want Dr Peatfield to send a letter regarding his findings and recommendations, he will do so. The problem with Dr Peatfield is you feel you are talking abouthydrocortisone steroids like smarties and although I was tempted Icouldn't self medicate this or Armour in the end without somebloodwork and monitoring. Personally I can understand why thyroxine isconsidered the first choice treatment and if it doesn't do its jobthen look into other thyroid treatments

Dr Peatfield knows more about adrenals and how they should be treated than the majority of doctors. He has studied this in depth. I would suggest you read his book "Your Thyroid and How to Keep it Healthy" where he has a large chapter on adrenals and how they should be boosted, starting off with adrenal supplements, and if they are not strong enough, Isocort, and if that is not strong enough, then Cortisone itself. If only other doctors would treat their patients adrenals before starting them on thyroid hormone medication, there would be little to complain about. Quite simply, if you are not making the adrenal hormones, they have to be replaced, in the same way as your thyroid hormones have to be replaced if you are not making enough. There is no problem in taking hydrocortisone, if that is what you need - you are merely compensating for what is not there.

If your endocrinologists and GP will not give you the medications that will make you well, then it is your choice whether to leave it at that, or take the recommendations of such doctors as Dr P or any other private doctor, who will tell you if you have a thyroid or adrenal problem and recommend the medications that will give you back your health. Quite simply, it is your choice, and if you wait until your bloodwork bets outside of the range, you will become quite poorly.There is lots of information on our website www.tpa-uk.org.uk and lots of further information in the FILES and LINKS on this forum that will help you. Also, we have a pretty nifty team of people who will give you all the help and support you need, but...at the end of the day, the choice to self medicate is yours, and yours only. Nobody will force you into this.I seen a different Endocrinologist and had a clear mri scan to ruleout pituitary tumour producing tsh and had the TRH stimulation testwith an exuberrant response, my mum had an exaggerated response andalso a raised baseline tsh. Sub alpha units and heterophilicantibodies interfering with the assay were also checked by the hospital

Do I take it that the antibodies came back as normal. These being normal does not mean you don't have a thyroid or adrenal problem unfortunately.I feel now my problem has become a lot more difficult and don't knowif those glandular supplements contributed because I have never takenthyroxine. I feel the same in my condition except the numbers of thethyroid hormones are more difficult to understand with a high tsh andhow to treat it. I am waiting for a referral to a professor whospecialises in thyroid hormone resistance but it is a rare biomedicalfinding mostly spotted at birth and then the thyroid hormone receptorgenes are looked at for mutations

The glandular supplements you were taking would do you no harm but would only help to boost your adrenals and thyroid. They are full of vitamins and minerals, which these glands need. We always have the problem when taking vitamins and minerals wondering whether it is them making us well, or whether we would be well not taking them, and if you feel bad, whether it is these making us feel bad, or whether we would feel bad anyway without them.

It is likely that your problem has become a lot more difficult because you are not replacing the thyroid hormones your body requires, no supplements are glandulars are going to help there. No hormones, replace the hormones. Get your Free T4 and Free T3 results and post them here and hopefully, we can get a better picture of what is happening. Good luck with your professor - I know a lot who sadly, are not much help to their patients, but there are some who are good - I sincerely yours is, and that he has a mind of his own and is prepared to go outside of the NHS diagnosing protocol if necessary. Let us know the outcome of your consultation and the tests he is going to do for you.I currently go to hypnotherapy, long changed diet and you can tellfrom the username I am doing what I can to stay sane

Why are you going to hypnotherapy?

Sheila it is interesting with Ferritin I had a result of 70 somethingand had it double that number last time checked probably due tochanges I have made. It is a crazy ten fold range they use for what isoptimal or even normal for this, Nevermind!

A ferritin level of 70 is considered normal, you have no need to try any supplements to boost this even higher. You are correct, it is a very wide range, but somebody else might be able to tell you why.Your article at the BBC is right in the sense that in my case andprobably several others getting the tests done properly for thyroidhormones in the first place. The nhs tsh tests carried out by my GPweren't very sensitive and they don't measure free thyroxine.Basically getting a tsh test from them is now considered meaninglessfor me that is from a GP themselves comparing tsh history. My mum wasanother example when checked in the hormone clinic

My article at the BBC has long gone, months ago. The BBC stopped that particular 'perk' where people could write their stories sadly. The one thing that should be considered above thyroid function tests is a thorough clinical examination, symptoms should be looked into and the signs should be looked at. patients should be asked their family history to see if other members have a thyroid problem or an autoimmune disease. Thyroid funciton tests should be only PART of a decision as to whether a patient is hypothyroid or not. I read some of the British thyroid associations guidelines and itsinteresting the question of the upper range lowering to 3 and even 2.5in some places was not considered because while acknowledging it theycan not justify the amount of people that would require furtherinvestigation in the uk. So it is a bit political and has something todo with money you would think

It matters not whether it is political or whether it has anything to do with money, it matters that whatever the reason, it will be kept secret from all of us, and all we need to worry about is changing the system within the NHS and putting up arguements they cannot dispute. Keep at it long enough, and we WILL change this.

I can't believe it takes so long to address a problem from a smallgland in your neck that is so important to quality of life!

This is why TPA-UK is here. We are doing what we can to address those problems that we can address and meanwhile, trying to help and support those brave individuals to look after themselves after their desperate attempt to get the treatment that suits them within the NHS. TPA has a huge responsibility,, and as long as the BTA continue to refuse to look into the problems they are causing, and the tens of thousands of patients who remain ill because of their guidelines and the use of L-thyroxine as the 'gold standard' treatment, this responsibility will continue.

Don't forget to re-register using an email address. You can use Hotmail, or Googlemail, but you must have one to be a member here.

Good luck.

Sheila

No virus found in this incoming message.

Checked by AVG - http://www.avg.com Version: 8.0.138 / Virus Database: 270.5.6/1575 - Release Date: 26/07/2008 16:18