I've seen Dr P! But now a little apprehensive.......

[nicolajane]

Well, I finally bit the bullet and made an appointment with Dr Peatfield - my appointment was on Monday.

What a lovely man! So kind and sympathetic, I wish I had done this a year ago. Anyway, he agreed with my theory that I wasn't converting properly and suspected this is partly due to my adrenals and he reassured me that I would be able to get better.

So, I've ordered Nutri Adrenal Extra and Nutri Thyroid and after a short break form thyroxine, I'm going to start the protocol.

Trouble is, I'm now worrying about a couple of things and I'd love to hear from anyone who has been through the same treatment protocol:

1. I'm worried about stopping/cutting down my thyroxine in case I feel really unwell

2. What do I do as regards my GP? do I tell them or not?

3. A friend has expressed concerns about unorthodox treatment and has now frightened me by sending me info that thyroid extract may contain CJD/mad cow disease and has a long list of potential side-effects!!!

Am I just being paranoid? Any reassurance welcome!!

Nicola

[helvella Administrator Thyroid UK]

On item 3) a) the CJD/mad cow issues:

If regular, food-grade pigs (the sort from which Thyroid USP is made) are transmitting these diseases to us, it strikes me that desiccated thyroid is likely to be somewhat less significant than bacon, sausages, ham, gammon, and the thousands and thousands of products that contain pork in one form or another.

I am reminded of a story of what happens to pigs:

dailymail.co.uk/sciencetech...

Similarly, with the non-prescription desiccated thyroid which is often made from bovines - and very often from New Zealand. (It is often claimed that NZ has had no cases of MCD.)

I think that I would actually be more concerned if I were injecting the products - as do some diabetics with porcine and/or bovine insulin.

That, of course, does not in any way establish that there is, or is not, a real problem. But hopefully puts things into proportion.

It would be somewhat ironic to avoid desiccated thyroid on these grounds and get something from a bacon sandwich or a steak.

On item 3) b) long list of potential side-effects.

Certainly medicines can have long lists of side-effects. (Or, perhaps we should concentrate on those we really do not want - the Adverse Drug Reactions?) But for every ADR you put in a list for desiccated thyroid, we can probably put up several continuing effects of not treating hypothyroidism as well as we can.

The Thyroid UK list is here (and lower down):

thyroiduk.org.uk/tuk/about_...

Good though this list is, I am quite confident that many of us could add things to it within minutes of thinking about how thyroid issues have affected us. So list-length doesn't really mean much and the truth is that many issues reported about thyroid hormones are actually related to the impact that being hypothyroid has already had on us.

Physical

General

Excessive tiredness

Weight gain

High Cholesterol

Cold extremities

Slow movements

Slowed Achilles reflex

Slow speech

Pins & needles

Breathlessness

Palpitations

Liver tenderness and enlargement

Anaemia

Lack of co-ordination - especially of hands and feet

Insomnia

Loss of libido

Repeated urinary tract infections

Albuminuria (protein in urine)

Upper respiratory tract infections

Pelvic Inflammatory Disease (PID)

Poor response to treatments

Candida

Heavy eyelids

Hoarse voice

Goitre (enlargement of the thyroid gland)

Muscle cramps and weakness

Joint stiffness

Heat/Cold intolerance

Diminished sweating

Low basal temperature

Hypoglycaemia

ADHD

Vertigo

Balance problems

Dizziness

Puffiness of:

Eyes

Face

Hands

Feet

Ankles

Mouth & Throat

Difficulty swallowing

Sore throats

Swollen tongue

Scalloped tongue

Choking fits

Dry mouth

Halitosis

Numbness in:

Legs

Toes

Arms

Fingers

Back

Hair

Body hair loss

Head hair loss

Brittle hair

Eyebrow loss (outer third)

Eyelash loss

Nails

Brittleness

Flaking

Skin

Dry

Flaky

Coarse patches

Pallor (yellow tinge to skin)

Boils and spots

Eczema and psoriasis

Bruising

Pain

Migraines

Pressure headaches

Back and loin pain

Wrist pain

Carpal Tunnel Syndrome

Digestive Problems

Alcohol intolerance

Constipation

Haemorrhoids

Irritable Bowel Syndrome (IBS)

Abdominal distension/flatulence

Menstrual Disorders

Cessation of periods (amenorrhoea)

Scanty periods (oligomenorrhoea)

Heavy periods (menorrhagia)

Low fertility

PMT (premenstrual tension)

Visual Disturbances

Poor focusing

Double vision

Dry eyes

Gritty eyes

Blurred vision

Hearing Problems

Noises in ears (hissing)

Deafness

Tinnitus

Mental and Emotional

Panic attacks

Memory loss & confusion

Mental sluggishness

Poor concentration

Noises and voices in head

Phobias

Loss of drive

Post Natal Depression

Nightmares

Easily upset

Wanting to be solitary

Mood swings

Depression

Nervousness/anxiety

Personality changes

Feelings of resentment

Lack of confidence

If I felt that it was appropriate for me to do so, I would be as comfortable taking desiccated thyroid as any other thyroid medicine.

Rod

[nicolajane in reply to helvella]

Thanks for your reply Rod.

Yes you're right, all medicines come with a long list of potential side-effects. I think it was the CJD thing that was bothering me - you've reassured me a bit on that front!

And yes, I can tick pretty much 90% of that list of current or previous symptoms. Because I dont eat red meat (and am shall we say, sensitive about animal welfare issues) I'm just being a bit squeamish about it. But, I'm prepared to give it a go in the hope of feeling well again.

[PinkNinja in reply to nicolajane]

I have to agree with Rod. I have taken Nutri Adrenal and Nutri Thyroid (and considering returning to Nutri Adrenal as I think my adrenals are suffering again) and I now take NDT.

If you don't eat red meat you may want to get your iron, ferritin, B12 and folate tested and get the results and post here. You likely will need some iron and B12, if you don't eat a lot of meat, to bring you into the optimal ranges of each. Both are important, it is believed, for your body to properly use the thyroid hormones. Many people recommend taking a maintenance dose of B12, in the form of methylcobalamin, at a dose of 1000mcg daily.

[nicolajane in reply to PinkNinja]

Thanks Carolyn, I'm already taking ferrous sulphate and my B12 has come back in the normal range though though most recent test it had dropped from just over 300 to about 270. I do take B Complex but just basic Holland and Barrett - Can you recommend where to get the methylcobalamin??

[grammijee in reply to nicolajane]

Hello, You can get methylcobalamin at Big Vits.

[tavy in reply to helvella]

I love you!!!!! sorry to sound flippant but the list is fabulous to read, I have most of them, or have had at some time or another. My gp initially told me I was a neurotic 40 yr old. I stupidly believed him. nearly 3yrs later and tsh of 33.9 I made him listen to me. The new gp wont listen either! he wants me on HRT. wont tell me why. I see him tomorrow. Having had my thyroxine dose cut again by 25mg I feel like a mad woman. nasty dreams when Im awake. horrid things that are going to happen to my children/grandchildren. Where my mind is I dont know. Im terrified to even drive an hour into Lincoln. Yet when Im driving Im not fully aware. I have to concentrate hard! Im on 150mg thyroxine, they dont treat T3 even the 3 times in 8 yrs they have agreed to test for it. any advice very very gratefully recieved. thank you for being there.

[PinkNinja in reply to tavy]

You might want to get your iron, ferritin, vitamin B12, folate and vitamin D checked. If you don't have optimal levels of these (low-normal isn't good enough) you may find you don't use the thyroxine very well.

There was a paper published recently, which Rod posted yesterday, that states that TSH isn't a reliable test of thyroid status if you are hypothyroid. See this thread for details. You may at least be able to use it to persuade your GP to go by T4 rather then TSH.

He may argue with you that they can't do T4 test, but the reality is they will only do it if TSH is outside the normal range. If your TSH was within the normal range, he has no business decreasing your dose if you have no symptoms of being over-replaced and if your TSH was outside the normal range he should have no trouble requesting a T4 test to see what is going on.

You are not a neurotic 40 year-old. My doctor did at least agree that I shouldn't be feeling the way I was at 40 years old.

[Middleagemadness in reply to helvella]

HI Rod. Fantastic list - I have or have had most of these. Maybe you can explain something. Since starting on Erfa and, more recently Nutri Adrenal, I have developed new symptoms. Very dry scratchy eyes and nose. I am sure I am losing body fluid hence the dryness. Any thoughts please?

[boo16]

I can't comment on most of what you ask other than I am in a similar situation, seen Dr P and similar protocol to yours.

My understanding of Nutri Thyroid is that it is sourced from? can't remember exactly - someone will clarify -Australia?, but a 'Mad Cow Disease free country anyway, so don't worry.

With regard to telling your GP. Dr P said NOT.

Sorry can't be of any more help. Hope you feel better soon x

[nicolajane in reply to boo16]

Thanks boo, yes i dont think it's a good idea to tell the doc - I can just imagine the telling-off (to put it nicely!) I would get....

[PinkNinja in reply to boo16]

Bovine products are usually from New Zealand where it is believed there have been no cases of BSE

[babycatcher7572]

Hello

Ive been through that protocol under Dr P...he sure is a lovely man! I did 2 weeks of coming off the thyroxine as my serum t4 levels were high and was in danger of becoming toxic. My ft3 levels were at the very bottom of the range and have conversion issues too. By mid week of the second week i was feeling the pinch...quite hypo and my mental health deteriated too but i persevered as i have trust in Dr P. The nutri adrenal x didnt cause any problems....the nutri thyroid made me quite jittery on a lowish dose...it just didnt suit me...but it does for others. I am now on t3 and t4 combo....but this hasnt been an easy journey either for all sorts of reasons, however my trust in Dr P is still strong and i am awiting my third prescription and set of diaries.

Keep your diaries well....i have often filled in more days than is required by him especially if symptoms or affects are significant. Are you taking other supplements too for your adrenals and conversion issues?

I didnt tell my gp initially but as i have come to the end of what the nhs will do for me , i fessed up to what i was up to. She understood that i couldnt and wouldnt accept that 'this was it for me' and have to explore all avenues to get well again. She has agreed to do bloods when required, though she was a bit nervous about doing an ft3 as she was worried about not acting upon an 'unusually high' result. Dr P said all we needed to do was tell him the result!!

But she didnt kick me out of the practice...yet lol

Good luck

K xxx

[Marz]

As T4 is stored in the body until required - you just may be fine as you wind down. Guess I mean you won't run out of T4 immediately. Hope all goes well with your new protocol - just take baby steps and follow your own instincts. If concerned speak to the girls at Dr P's clinic - they have a wealth of knowledge and have given me huge support when Dr P is busy elsewhere.

Of course we listen to our friends as they mean a great deal to us - but do listen to your body first !............

[Plumfairy]

I have been through exactly the same treatment and 6 months down the road I feel wonderful. I was also apprehensive about the treatment but if you are not converting the Thyroxine then you will not miss it and it is only 14 days until you start the T3. I did find that initially I felt really good but had to adjust the dosage as we went on as I began to have a really high pulse rate which was uncomfortable, but I reduced the dosage until I got to a comfortable level and I felt great.

My doctor asked me why my bloods showed a lower TSH and T4 so I told him that I had tried to resolve my issues by coming to see them but all I got was was that I was borderline and no one had any interest in helping me so I helped myself. Needless to say, I got an apologetic mumble but thats all.

If you feel concerned about the Nutri range why don't you read their factfile found here.

nutri-online1.co.uk/Patient...

I hope this helps.

Regards

Wendy

[Teddysmum43]

I've also seen Dr P and was all so put on the same protocol. Nutri thyroid and nutri adrenals sent my anxiety sky high. I felt very unwell but maybe I should have persevered but as I have two kids to look after on my own I needed to be able to function as I wasn't. My own doctor did a blood test and my thyroid had gone under active again even though my symptoms showed I was hyper. I got so utterly confused I gave up. Good luck with it,keep us posted.

[nicolajane]

Thank you everyone - lots of information and support - much appreciated!!

Nicola x