GP now says I do not have Hashimoto's!

Hi all, me again! Since my last post a few months ago, and shortly just after returning to UK to live permantly with several previously diagnosed conditions, things have not progressed as favourably as I'd hoped given the quick referrals to Consultants, just got worse! Surprisingly, last week the GP turned up on my doorstep here, saying my Social Worker (whom I haven't talked to in a while) had phoned surgery to say I was confused! GP went on to say, after we had talked about my worsening health, he didn't find me to be confused :-) I was quite lucid actually.

Having requested via a phone call from his Surgery just B4 Easter, to see my dossier of 8 yrs of French medical records, comprising mostly of blood plus other test results, he did say that I DO NOT have either Hashimoto's or Thrombocytopenia! (Med records said differently though).

Since my return however, I have been referred to and seen NHS Consultants in quite quick succession, as in - Orthopaedic, who said he won't operate on my left foot for slowly progressive bone deformity in the foot & toes, where most of the nerve pain is, so he referred me to a Podiatrist - after 1st fitting check, couldn't get them on, so now waiting for 2nd fit appt.

Also had and seen via the GP Referrals, Rheumatologist & Endocrinologist both of whom I already have 2nd consultation dates with quite soon. No Haematologist referral for Blood Disorder yet. Though have also had a Neuro-Rehab Consultation

Headway, who had been my only Brain Injury support (by phone and their Forum) but now here, also want to do an Assessment. by a referral

once and will see again next week.

What does above have to do with Thyroidism- I'm the only one who knows how MY body feels and reacts to specific foods or meds previously prescribed! Well I'd got to the point, where as days/weeks/months progressed, 100mcg Levothyroxin the one Med I'd never stopped taking was affecting my myelin sheath breakdown more rapidly. My last prescription pack was manufactured by Teva and the pack says New Formulation. The joint and/or nerve pain, especially in my left foot, got worse and more painful - I also couldn't move for about 5 mins one morning but when I did wow the pain was so intense in my hands and foot!

Those who know me, may remember I started researching my own whole health history from birth in 2014, as well as looking into the combination of meds I'd been variously prescribed while living abroad. At the time I was using drugs.com to check out different meds compatibility.

So now in May, despite being here almost 7 months, I was reduced to only being able to walk with help of a walking stick, continuing muscle weakness till it got to the point where on 20th April I stopped taking my Levo and have had only taken 3 tabs since of needing an electric mobility scooter, which I had to buy 2 weeks ago!

The last decisive action I took was on 20th April - to stop taking the Levo and much to my amazement the left foot nerve pain reduced drastically on same day - the number of lesions breaking out and pitting my skin has lessened - I only since then which is currently v painful but I can now bend my fingers, also there in almost no stiffness in my neck and I can turn my head quite freely from side to side. Much less confusion and what there is I can still put down to my brain haemorrhage/I jury, as is the dragging of my left foot perhaps - who knows?

On this mornings news now some dogs apparently have a condition called Alabama Rock and one owner interviewed described the similiar symptoms, initial sickness, followed by a limp and then breakout of lesions on foot pad and leg if I remember correctly. She had 4/5 dogs, only the one had to be put down, but she was cuddling another one, brindle coloured, looked a bit like a greyhound - do they get Thyroid problems? They probably consume a lot of red meat in their diets though!

My diet consists of fresh fruit and honey on my cereal (blueberries, grapes or banana only with Cornflakes or krispies these days - no weetabix, Vit C from Tropical juice, I don't drink orange because it is too acidic. I eat quite a bit of chicken, peas,carrots, sprouts occasionally. I have been using Lactose free milk which had also helped, but bought my 1st normal S/skimmed at weekend - not a good idea. Ordinary Cows milk contains protein A1 and 2, possibly more than is in Lactose free milk. I can also still eat a 50/50 K-mill sandwhich. I don't eat Pork at all, as advised not to by the French Pharmacist, but then I never was keen on Pork! I can eat lamb, duck and poultry all in small quantities with no apparent bad side effects.

"which protein is involved in the myelin sheath problem with the thyroid and nerve sclerosing. Does anyone know? My guess is it's still something to do with A1 A2 protein in cows milk! Neither of which have I been tested for, if that's even possible! I have been tested via urine sample for a different Protein ? Bence...but sample not taken under recommended guidelines I.e 24hr collection. I'd also eaten breakfast on day of giving single urine sample at the hospital!

So small progress and both Endo / Rheumatologist seem to understand the complexities of the Thyroid. 1 of 7 Glands the body needs all of which to be functioning Healthily! End of my experiences thus far with NHS Consultants!

I'm not Medically qualified but know better how my own body feels and reacts under certain circumstances

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7 Replies

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  • SAMBS,

    Optimal Thyroid hormone (especially T3) plays an important role in brain function and controls the expression of genes involved in myelination.

    Before optimising my T3 levels, I suffered massive cognitive problems and terribly aches and pains.

    A1 milk is from our black & white cows and is more likely to cause troubles in some than A2 milk from goats, sheep, etc.

    .

    sciencedirect.com/science/a...

  • Dogs do get thyroid problems - usually hypo, but they can get Hashi's. Cats only go hyper. But, eating red meant doesn't help or save them! There's no connection that I know of.

    Doctors in the UK do not like talking about Hashi's. They like to call it 'autoimmune thyroiditis'. God knows why!

  • Probably because Mr Hashimoto came up with a very successful cure using the dried up thyroid gland of a pig... Can't have patients asking for that now, can we?

  • No, that's not a cure. And I don't think it was Mr Hashimoto that developed it. It helps some people, not everyone. In fact, you're less likely to get on with it if you have Hashi's.

  • Desiccated thyroid was developed through about 1892 to the turn of the century.

    Dr Hashimoto didn't do his work until after that (think publishing in 1912) - and it lay largely ignored and forgotten for many years afterwards.

  • Hi zephyr bear - i keep well away from Pork whether dried or not, dead or alive :-)

  • Interestingly but not surprising is that members who have told us their pets also have the same problem as us often say the vet seems more knowledgeable!

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