greygoose3 years ago

If you are hypo, you cannot suddenly become hyper. That is to say, the thyroid cannot go from under-active to over-active. It can't regenerate and certainly not to that extend.

But, what can happen is that you become over-medicated, meaning that your FT3 goes over-range. Judging by the one FT3 result you have, that was not your case.

However, your antibody results are saying that you have Hashi's. I presume you know that Hashi's is an autoimmune disease, meaning that your immune system is periodically attacking your thyroid. When that happens, the dying cells release their store of thyroid hormone into the blood stream, causing the levels of FT4 and FT3 to suddenly shoot up, and therefore the TSH drops. That is not true hyperthyroidism, in that your thyroid is over-producing hormone. It is a temporary false 'hyper' state, maybe causing hyper symptoms, maybe not, but eventually, the levels will go down by themselves. So, no, you do not what to take anti-thyroid drugs, such as those that are given to people with Grave's. That would be entirely the wrong treatment.

To know if this is your case you would need to test the FT4 and the FT3. However, by the time you get the test, and have extracted the blood, sent it back and had it analysed, the 'hyper' phase might be over, so you'd be none the wiser, I'm afraid. And, yes, lots of people have finger-prick tests and find them entirely satisfying. Although I've never had one myself.

But, apart from the muscle aches, what make you think your thyroid hormone levels are too high? They haven't been in the tests you've had done. Muscle aches can be down to low nutrients. I had them for years. I was a 6+ Ibuprofen a day girl for ages. Until I start taking zinc. And, the aches and pains disappeared almost over-night. It was quite amazing!

Or, perhaps the fillers in most thyroid hormone tablets disagree with you. Or it could be something else entirely.

Since 16/3/20 I have “ trialled” a week here and a week there on Levo 50 and Lio 12.5 - separately.

Well, that is hardly going to work, is it. You need to be on the same daily dose for at least six weeks to feel the full effects of any thyroid hormone. Unless, of course, it's the fillers that disagree with you. Have you tried taking different brands?

So, can thyroid meds be contraindicated in my case?

You could ask that question two different ways, and get two different replies:

1. Can thyroid hormones be contra-indicated in your case?

Why would they be? If you have low levels, and you are hypo, you need to take exogenous hormone of some kind. You cannot live without thyroid hormone.

2. Could the filler/excipients in the thyroid hormone pills be affecting me?

Yes, they certainly could. And, if that is the case, you need to try different brands that have different fillers/excipients, to see if you can find one to suit you. Or, perhaps you could get hold of liquid T4, and see if that's better for you. There's even liquid T3 in Italy, but I don't know if you'd be able to get hold of that.

Hidden in reply to greygoose3 years ago

Thank you greygoose for a comprehensive, studied and helpful reply, as usual!

Yes, of course I understand I have Hashis now, and have to take some thyroid meds for life. But which?

Have given Levo 50 6 months till November and NDT 1.5 from then on

And yes, the numbers have become more optimal, but my main symptom of aches has progressed.

I was pleased that you found a cure in zinc for aches.

What dose did you take and for how long and are you still taking it please?

I shall definitely give it a go and have already had 15mg with my brek this morning.

Thanks again!

Alps

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greygoose in reply to Hidden3 years ago

6 months is just not long enough. It's not long enough to get on a decent dose, for a start. And, when you do get on a decent dose, you have to stay on it for longer than six months because the effects are accumulative.

I took 15 mcg daily. Been on it for years, now, with the occasional break. Still taking it.

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Justiina3 years ago

If that 10 mcg B12 was not typo that could actually be one major cause of aching. It is way too little of B12 and I would try at least 1000 mcg to see if it helps.

Hidden in reply to Justiina3 years ago

Thanks Justina

Well spotted, meant to say 10ug!

My last Medichecks B12 was 150 (37.5 - 187.5)

Thanks

Alps

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Angel_of_the_North in reply to Hidden3 years ago

ug is mcg - they are the same thing: micrograms. Did you mean 1.0mg ie 1,000 mcg/ug?

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Hidden in reply to Angel_of_the_North3 years ago

Thank you angelof the north

I did mean 10ug and yes it is the same as 10mcg

Daily B12 recommendation is 2.5ug, so I'm taking 4 times as much

And that's fine

As my last Medichecks was 150 (37.5 - 187.5)

Thanks

Alps

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Hidden in reply to Hidden3 years ago

Hi justina

Can you please say why you feel that I should be taking 1000mcg (ug) B12

When that is 400 times the recommended daily dose?

And I already have a high in the range B12 reading of 150 (37.5 - 187.5) whilst taking just 10 mcg (ug)

Have you heard of anyone whose mucle aches improved after they did this?

Thanks

Alps

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Justiina in reply to Hidden3 years ago

RDA is sufficient when one is healthy and absorb B12

Us ,who were low ,take up to 5000 mcg daily basis to fill up storage because only fraction of it is absorbed.

However serum level is just serum level and doesn't tell if the B12 is entering the cells or just pooling on your blood.

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Hidden in reply to Justiina3 years ago

Hi Justina

Thanks for your views, much appreciated.

I have edited my Active B12 readings as the one I posted wasn't Medichecks

My last 4 Active B12 Medichecks readings (roughly every 3 months starting from Feb19) are

Feb 19 - 200

May 19 - 195

Aug 19 - 235

Jan 20 - 150

Ranges are the same for all the above - (37.5 - 187.5)

I have just read that it is only the active B12 that can enter the cells?

So, from my readings, I am considered high in the range?

However, is it possible that, in some people with a high in range Actiive B12, there is a chance that it is not going to where it is needed?

So, is there a better B12 test than the Active B12 one?

What are your B12 related symptoms?

And what are your readings and what type of B12 do you take please?

Is there a best type of B12 to take?

Thanks

Alps

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Justiina in reply to Hidden3 years ago

Functional deficiency is always possible especially when you are quite high on range with active B12 with that little B12 taken.

With B12 it's safe to experiment though , if it does anything good then you needed it, if nothing happens it wasn't the problem.

I get B12 injections in cyanocobalamin form and top up with sublingual adenosylcobalamin/methylocobalamin.

My original symptoms were fatigue , brain fog and achy muscles.

For best result I needed B12, essential aminoacids, vit D and folate rich diet.

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Hidden in reply to Justiina3 years ago

Thanks for that Justina!

Great that adding B12 has helped you get rid of brain fog, achy muscles and fatigue

How long did it take for your symptoms to go please?

My main symptom, and I will search forever for a cure for it, is achy muscles.

(So, if you say it has helped your achy muscles, I will def give it a go!)

And a bit of brain fog - going into a room for something then forgetting what for!

Not fatigue though, thank goodness!

What dose are you taking please?

Do you do your own injections?

Yes I do understand that since it's water soluble, it's safe to take lots of it?

I became vegan at age 40, 70 now, so started on 10 ug B12 then

However, I am now not vegan, as my wife suggested I eat fish, which I have done for a couple of years now

I can honestly say that if/when! I find the answer for my achy muscles, I shall definitely return to being vegan again

As the main reason I became vegan was to help the animals that share earth with us

So, you are suggesting that since I take just 10ug (Four times the RDA) and I am high/or just over in range, that I may well have Functional Deficiency?

I had never heard of this before, but have read a bit since you brought it to my attention - thanks!

What are your numbers now that you're taking large doses please?

Will definitely next consider trying topping up the B12 - to 100ug? To see if it helps

The reason I am not doing it immediately is because for the last 3 days now I have been trialling a mix of Levo and NDT (I am Hypo with high antibodies) and it does seem to be helping! so will give it a week and see

I started this Mix on the advice of somebody on the Thyroid forum

It's great that there are forums like these, where people who KNOW a lot about their condition, can help others

I learnt long ago (it's been 3 and a 1/2 long years now of trying this and that) to just try ONE thing at a time

So then if there's any difference, either way, it must be related to what you are trialling at the moment?

Thanks once again for your tip Justina and I wish you good health forever!

Will keep you posted in a week re my Levo/NDT trial.

Thanks

Alps

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Justiina in reply to Hidden3 years ago

My injection is combination of B12,B6 and B1 which is why I don't do selfinjecting. Its 3 milliliters and I have tiny muscles so had to injected to buttock.

Injection is 1000 mcg and sublingual is 1000 mcg , I take 2 if I feel I need it. Bad times I take every day so can be 2000 mcg daily for a week.

When I started injections I felt improvement with muscles quite fast and could go uphill hiking and climbing stairs without any problem. Was fine until my thyroid started to act out and it brought some of the muscular issues back, I feel lactic acid build after doing anything physically heavy.

I hope your muscle aches will lessen , it might not be B12 but the fact that you had high active B12 while supplementing that little raise questions. In the end it might not be lack of B12 , as for example liver or kidney issues could cause numbers like that which I hope it is not the cause for you. However thyroid problem might affect liver which would then affect B12.

But trialing B12 is safe so if it doesn't work you can tick that box , at least you tried it. Lets hope finding ideal thyroid medication will do the trick and you can carry on without worrying other things to correct

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Hidden in reply to Justiina3 years ago

Thank you Justiina for all your tips

that's a lot of B12 you're taking!

Any idea why you need such high doses?

What are your active B12 readings with ranges please?

My Medichecks liver and kidney results have always been in range

Thanks for bringing to my attention that my B12 numbers may be too high, considering I am taking only 10ug.

I never ever would have queried that, if it was not for you pointing it out

As a result, I aim to find out more, by posting on the B12 forum to see what others make of it

Thanks

Alps

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Justiina in reply to Hidden3 years ago

Usually you only absorb a fraction of B12, therefore you need high dose, it's pretty much 5-10 mcg you absorb from 1000 mcg. The system responsible of B12 is complicated , in ideal health the reuse of B12 is endless but have just one flaw and the whole system goes wonky.

My serum B12 and active B12 were low despite supplementing.

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Hidden in reply to Justiina3 years ago

Thank you Justiina

Some more useful info there

So you were taking 1000's of mcg B12 and your blood levels of serum and active B12 were still low!

I do hope you get back to health

I have posted on the B12 forum and will see what people think

Thanks again

Alps

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SlowDragonAdministrator3 years ago

You can’t keep changing doses

It takes months for each dose of levothyroxine to settle

It may have been coincidence, but thyroid antibodies rose rapidly when on NDT. So NDT may not be suitable

Suggest Starting back on levothyroxine and SLOWLY increasing dose upwards

Bloods should be retested 6-8 weeks after any dose change (or brand change)

Likely to need some where around 1.6mcg levothyroxine per kilo of your weight....but starting at 50mcg and increase up in 25mcg steps

You may eventually need to add small dose of T3 alongside levothyroxine...but first step is to get settled on levothyroxine

Hidden in reply to SlowDragon3 years ago

Thanks slowdragon

Yes agree that Levo gave me better numbers than NDT

FT4 and FT3 were higher and antibodies lower on Levo

So may well restart Levo - slowly and see

Thanks

Alps

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SlowDragonAdministrator in reply to Hidden3 years ago

So starting on 50mcg ...or possibly 75mcg

Wait 6-8 weeks before testing

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tattybogle3 years ago

Hi there, Some observations/comments from my experience.

You were 'lucky' ! to get diagnosed early when all you results were still in range.

Even though the pattern of raised tsh , low FT4 , high ft3 (the struggling thyroid compensating by upping T3 production- i think) and raised TPOab, is obvious if you know what to look for , not many GP's understand thyroid properly.

The rapid rise in TPOab (antibodies) was happening to me at diagnosis (autoimmune hypo)

2499 [0-50] , started 50 mcg Levo 3weeks later , then >3000[0-50] seven weeks later. I don't know what happened to them after that , but a decade later they were 194. I have always assumed that the rise was the natural autoimmune disease process.

My gut feeling looking at your 'numbers' without knowing how you were feeling , is that you were diagnosed earlier in the process than i was ( my tsh was 5.7[0.36-4.1] rising to 6.8 before started on Levo ). But we are all very different in where our 'normal' numbers were even when healthy.

I think you would have got a clearer idea of progress if you had continued the process of raising Levo doses and tesing at 6+ week intervals until your FT3/FT4/TSH results were looking better.(in that order of importance rather than the GP's usual TSH/ FT4/ 'What's an FT3 ? we dont do that' approach) . Levo alone does allegedly! work for a lot of patients, and while i'm not convinced its optimal , you can't know if you haven't tried it up to a full dose, which would usually be between 100/200mcg depending on... lots of things .

Whatever you are 'dosing' it does take at least 6 weeks on same dose to see what's happening , first, because the tsh can 'lag ' behind the actual events by weeks sometimes (not always though in my experience).

And second because from my experience on Levo dose changes, how you feel can keep changing every few days, for weeks after a change. I nowadays wait for at least 8 weeks to feel sure of what's what . In the early days i was not so patient, but with 17 yrs hindsight, it's difficult to be sure whether some of my earlier 'this dose is Wrong ' assertions were true.

SlowDragonAdministrator in reply to tattybogle3 years ago

Couldn’t agree more ....I have learnt over the decades of having Hashimoto’s I personally find it best to wait at least 10 weeks after any dose change....however difficult that is

Everyone always definitely needs to wait absolute minimum of 6 weeks before testing...8 weeks likely better

Hormones Definitely can’t be rushed

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Hidden in reply to tattybogle3 years ago

Thanks tattybogle

For your thoughtful and illuminating reply

I was 'diagnosed' by a helpful private endo and started on Levo 50 in May 19

GP now supplies it

NDT I get from wherever

You've had a very long 'journey' with Hypo and Antibodies and what were your symptoms and how are you feeling now?

Are you still on Levo and what dose please?

I shall now recommence Levo, starting small and see. - fingers crossed!

Thanks

Alps

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tattybogle in reply to Hidden3 years ago

Long story....... see my profile .. but don't let it depress you! nowaday's, as you have found already(well done) you can talk to others with experience and not just the doc I've spent years being dubious of internet chat advice , because when i first looked , it was full of 'snake oil' salesmen! it still is , but not very often on here! Thanks Lovely Folk and Admin's

Wishing you good health (pay attention to the nutrition/ vitamin advice - i didn't)

Tat

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SlowDragonAdministrator3 years ago

thyroidpharmacist.com/artic...

I always advise testing thyroid antibodies before and after starting new thyroid medications. For example, if someone starts feeling worse after initially feeling better on NDT or has an increase in thyroid peroxidase antibodies after starting NDT, switching to a compounded T4/T3 medication may be helpful.

SlowDragonAdministrator3 years ago

Why are you taking calcium?

No vitamin D supplement?

Hidden in reply to SlowDragon3 years ago

Thanks slowdragon

Have taken calcium from when I bacame vegan 30 years ago

Not vegan now as I eat fish

I take 10ug D

Thanks

Alps

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SlowDragonAdministrator in reply to Hidden3 years ago

When was vitamin D last tested?

Obviously iron and ferritin are Extremely difficult to maintain at good levels on vegetarian diet

You probably need full iron panel test for anaemia

Certainly need iron and ferritin tested

Eating iron rich foods like pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

dailyiron.net

Links about iron and ferritin

irondisorders.org/Websites/...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

academic.oup.com/nutritionr...

The present review of the literature regarding B12 status among vegetarians shows that the rates of B12 depletion and deficiency are high. It is, therefore, recommended that health professionals alert vegetarians about the risk of developing subnormal B12 status. Vegetarians should also take preventive measures to ensure adequate intake of this vitamin, including the regular intake of B12 supplements to prevent deficiency. Considering the low absorption rate of B12 from supplements, a dose of at least 250 μg should be ingested for the best results.3

Vitamin D test £29

vitamindtest.org.uk

Optimal vitamin D at least around 80nmol

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Hidden in reply to SlowDragon3 years ago

Thanks slow dragon

My D in January was 79 (50-150)

Why are you suggesting I take 250 ug B12 please?

Which is 100 times the recommended dose

When my Medichecks was 850 (150-900) in January

So, that's at the almost top level

Have you heard of anyone who has continuing muscle aches despite their B12 level being high like mine please?

Thanks again

Alps

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SlowDragonAdministrator in reply to Hidden3 years ago

I only added that link that says as vegetarian you need daily B12 ....you’d be amazed how many vegetarians or vegans take no supplements

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SlowDragonAdministrator in reply to Hidden3 years ago

Iron rich fish

webmd.com/diet/iron-rich-fo...

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Wetsuiter in reply to Hidden3 years ago

I think calcium supplements not recommended unless you re deficient

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SlowDragonAdministrator3 years ago

High B vitamin fish

healthline.com/nutrition/vi...

Wolfiesmom083 years ago

I really like the blog The Tired Thyroid. In it Barbara talks about how many people can only tolerate 1 1/2 grains of NDT (that was the case for me) but still feel hypo. It’s because they don’t get enough T4 in the mix.

tiredthyroid.com/medication...

“Many on desiccated thyroid have lab results that show a low in range Total and Free T4 when their Free T3 gets into the optimal range (upper half). This is because desiccated thyroid (pig thyroid) is approximately 80% T4, and 20% T3, while a normal human’s thyroid output is closer to 94% T4 and 6% T3. [4] The simple remedy for people who test low on T4 is to just add some synthetic T4 to their desiccated thyroid. Studies show that both T4 and T3 need to be optimal for mental and physical well-being. The brain and body are in two different compartments, and some organs prefer T4, others T3. [4]”

Hidden in reply to Wolfiesmom083 years ago

Thanks wolfiesmom08

That is interesting, the different percentages of T4 and T3 in pigs and humans

I wasn't aware of that

That would explain why my FT4 was low on NDT and much higher on Levo?

I have taken 25 Levo before Tea today as per your and slowdragon's suggestion and will see how it goes

Thanks

Alps

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