Newbie - Hashimotos/Treatment stopped?

[HKAnne]

Thanks so much for the responses, as requested please see breakdown below:

TSH - 4.94 (MlU/L) 0.27-4.20

T4 - 15 (pmol/L) 12.00-22.00

Anti TPO Antibodies - 111 (ku/L) <34.00

Vitimin B12 - 80 (ng/L) 197.00 -771.00 (now over 2,000 due to B12 injections)

Hello everyone, I saw an endocrinologist last week who said I should stop taking Levothyroxine (taking 50mg per day). I have been borderline hypo for around 20 years but GP only decided to trail me on Levothyroxine in Autumn 2016. I have positive TPO antibodies which I believe means that I have Hashimotos, please see results beow.

TSH = 4.94 & T4 = 15 & TPO Antibodies = 111. B12 levels were 80 December 2016 and now taking B12 injections. My Ferritin levels were 9 but after taking Ferrous Sulphate they are up to over 50 now.

I am a bit confused as to why Endo. wants me to stop taking any medication, he also tried to convince me that I should stop having B12 injections too and has asked me to stop taking Ferrous Sulphate. No blood tests have been taken for months and the Endo does not want bloods reviewed for another 8 weeks.

I feel I should be taking something as I am wrecked with exhaustion.

Any help would be greatly appreciated.

Many thanks.

Anne

[shaws Administrator]

Quite frankly. I'd change this Endocrinologist and put up a new post asking for a recommendation if there's one in your area. Ask for the information to be sent to you by Private Message.

His Advice !!! your B12 level was 80 in December so asked you to stop the injections. Be very wary and I wonder if he is qualified as he appears to know nothing about deficience.

p.s. When posting results the ranges should also be posted as labs differ in their machines so ranges can be different. Just to complicate matters.

I am not surprised you are exhausted - I am and only because I've read your post

Dr Toft retired - was President of the BTA and if you email [e-mail] and ask for a copy of his Pulse online article wherein he says if we have antibodies we should be prescribed. He also states the whereabouts the TSH should come down to.

[HKAnne in reply to shaws]

Hi Shaws, many thanks for your advice. I will get in touch with Louise regarding Pulse online.

[Clutter]

HKAnne,

I don't understand why endocrinologists sometimes ask patients to stop taking Levothyroxine and retest. Surely they can obtain access to the patient's thyroid results at the point Levothyroxine was initiated to see what the patient's unmedicated TSH, FT4 and FT3 were?

Did endo ask whether your B12 deficiency is due to pernicious anaemia? I'm not sure it is within your endo's remit to ask you to stop having B12 injections or to stop taking iron.

If TSH was 4.94 a couple of months after taking 50mcg Levothyroxine you were undermedicated.

If TPOab 111 is over range it means antibodies are positive for autoimmune thyroid disease (Hashimoto's). There is no cure for Hashimoto's which causes 90% of hypothyroidism. Treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

chriskresser.com/the-gluten...

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

[HKAnne in reply to Clutter]

Hi Clutter, Many thanks, Endo knows that I have PA and talked at lenghth why I should not have injections, I had to interrupt politely and firmly ask if we could we stick to the Thyroid subject as I was already seeing a helpful Neuro for my B12 symptoms, he accepted that and thankfully did not mention B12 in his letter to my GP, who is also trying to put a stop to my B12 injections.

Thanks for the helpful websites.

[Marz in reply to HKAnne]

As you know your injections are for LIFE. These so called professionals do give great cause for concern ....

[HKAnne in reply to Marz]

I am very concerned, especially as my GP said I could take B12 tablets even though my stomach does not absorb B12. I now self inject as Nurses kept asking "how long is this going to go on for" when I attended for injections, I kept quoting the BNF and NICE guidelines at them "until symptoms stop improving" - but it fell on deaf ears.

[Marz in reply to HKAnne]

Its good that you are self injecting - me too. Taking control feels good. I have absolutely no idea why they want to switch patients over to tablets - apart from saving the cost of nurses time. There are lozenges that can be kept under the tongue - thus bypassing the stomach. Are you also taking Folate /B9 - as it works with B12 in the body ?

Are you on the PAS forum here on HU ?

[HKAnne in reply to Marz]

Hi Marz, I have tried a spray and patches but unfortunately, they did nothing for me. I am not taking Folate as my Folate levels seemed to be ok but many thanks for the advice - much appreciated.

I have not put anything on the PAS forum yet as B12 situation seems to be under control for now but I do review it regularly. I have learnt so much from both forum's and can't say how grateful I am for that.

[Clutter in reply to HKAnne]

HKAnne,

If you have been diagnosed with PA you will need lifelong B12 injections at 2-3 monthly intervals. Your endo is interfering in things beyond his competence when he advises you to stop taking B12 injections. If he raises the subject again I would make a formal complaint.

[HKAnne in reply to Clutter]

Thanks Clutter, I am self injecting B12 every other day until symptoms stop improving due to my neurological symptoms. The Neurologist has been very helpful and understanding. I will take your advice and report the Endo if he mentions it again when I see him in two months time.

[cwill]

Hello Anne wow! Yes you have hashis so I believe the advice is to treat once antibodies recorded and if you have symptoms. So what on earth are they doing now? 50 and a high TSH doesn't sound ideal, no wonder you don't feel well.

Can you edit your post, the little downward arrow at bottom right of your post, to add the ranges for the results. Many knowledgeable people will give you the advice you need.

[HKAnne in reply to cwill]

Hi cwill, many thanks for advice, will edit post to add ranges.

[Marz]

So what does this sadist of a doc propose to do to help you be well ?

He should be reported and sacked for utter incompetence .... I am so angry on your behalf 😊

[HKAnne in reply to Marz]

Hi Marz, Many thanks for confirming that I have not got it all wrong!

[cwill]

We are the sane but ill ones. They largely need to do their CPD properly and stop assuming that they have all the answers already.

[JS33]

With t4 that low, I doubt the T3 , which is the real mover , is very good at all. If it were me , i would probably change endo , or go my own way. I would certainly want to know my T3 , so private blood test maybe needed .

[HKAnne in reply to JS33]

Hi JS33, thanks so much for that advice, I will get a T3 blood test. When I originally saw my GP (before seeing Endo) re: thyroid I asked for all the tests and my GP said they had not heard of half of them and that I must have found them on an American website! I have learnt so much on this Forum in the last couple of days - thankyou!

Anne

[HKAnne in reply to JS33]

Hi JS33

Many thanks - think I will have to go my own way