How long until symptoms return after stopping thyroxine

[lare73]

Since stopping my 50mcg of levothyroxine last Tuesday I have today woke feeling very rough. This evening I washed my hair and lots of it falling out again! My eyelids feel like led all day, I've napped for the first time in weeks! Can this be possible?

[ravenhex]

I have never stopped taking it but it was lowered to 25mgs and what you are describing happened to me.

Why have you stopped taking thyroxine?

[Hidden]

Can I ask why you stopped your thyroxine? Jane

[James30]

I have seen the names of 3 Doctors on this website that know about the Wilson Temperature Syndrome and apparently use it. If you are able to use the WTS method to get your thyroid synchronized with the thyroid feedback system you will not need to take thyroid medication. The first time I used the WTS method I did not need to take thyroid medication until years later when I was again under great stress. I have read that in the U.S. the groups that are most susceptible to hypothyroidism are the descendents of the Irish and the Cherokee.

[PinkNinja in reply to James30]

Do you have a link to the information on this protocol please and the theory behind it? It would be interesting to read.

I was under the impression that the Wilson protocol involved dosing with T3. Is this correct?

[marram in reply to PinkNinja]

Apparently that is the case, but only if the other methods fail, and only for a limited period to get the temperature up so the other treatment can get a chance to work. At least, that's my take on it, be interested in yours, Carolyn.

wilsonssyndrome.com/

[PinkNinja in reply to marram]

Thanks I shall have a read.

[James30 in reply to PinkNinja]

Yes, it is. The idea is to not shock the feedback system into ringing or oscillating with a large dose of T3 so they start out with a very small dose of SUSTAINED RELEASE T3 at exactly the same time twice a day, for example, 6:00AM and 6:00PM. You keep a record of your temperature and pulse rate at 10:00AM, 1:00PM, and 4PM as you gradually increase the T3 by 7.5MCG per day until your temperature stabilizes at 98.6 degrees Fahrenheit. After several days, to make sure your temperature has stabilized, you even more gradually start decreasing the T3 EVERY TWO DAYS.

The reason for taking your temperature three times a day is so that you can get a more accurate reading by getting an average of the three readings. The reason for watching your pulse rate is to make sure that you keep your pulse rate below 100. A pulse rate above 100 is tachycardia.

[James30 in reply to James30]

Incidentally, I have found that the mercury type of thermometer takes at least 12 minutes to give an accurate reading, but never-the-less it still worked well enough for me.

[PinkNinja in reply to James30]

Thanks

[PinkNinja in reply to James30]

Although this only applies to those with WTS, I do wonder if this protocol could also help those with damaged/removed thyroids (who will always need medication) to respond better to their thyroid medication. Theoretically it should...

Interesting about predisposition according to decent. I wonder what the reasons are

[James30 in reply to PinkNinja]

I have read of a case where there was still enough thyroid left that the WTS protocol was still successful. I have also read that small amounts of T3 are produced by other parts of the body.

The reason for the predisposition according to decent is said to be because of the starvation produced by the potato famine in Ireland and the starvation of the Cherokee on their forced march from their homeland to Oklahoma Territory. Women who became pregnant on the march were said to have been removed by soldiers and shot within hearing range. I think that would be as stressful as starvation. My ancestors include both the Irish and the Cherokee.

[PinkNinja in reply to James30]

That is a really sad part of history.

I do find this whole idea of WTS very interesting. I wish someone would do some long term studies into this.

[PinkNinja]

I'd like to ask a few questions.

From your previous posts, I see that your T4 tends to be low in range or below range. Did you see any benefit from taking levothyroxine? Do you have blood test results for when you were taking it?

Have you managed to get your ferritin and vitamin D back up? Low ferritin can affect how your body uses thyroid hormones.

From what you are describing, it sounds like you need the thyroxine and, although thyroid blood tests are of limited use, they do show that you are low on T4.

Are you stopping the thyroxine in order to start a different treatment protocol? If so, what is this?

Sorry if it seems like I am being nosey. I really do want to help and it sounds like stopping the T4 is really affecting you badly

Carolyn x

[editfmrt in reply to PinkNinja]

This is from one of Lare73's previous posts:

"i had my private endo appointment this morning. My GP referred me to him and sent my info to him. He was lovely, pleasant attentive. But he thinks my thyroid is fine as my TSH is within range. The 50mcg Of levothyroxine i fought for through my GP I now have to stop".

What a travesty that she had to pay privately for this appalling outcome?

[PinkNinja in reply to editfmrt]

That is awful! Clearly, by her returning symptoms, she needs that thyroxine. I feel so mad when I hear this sort of thing.

[editfmrt in reply to PinkNinja]

Yes - me too. Multiply that by all the people we don't know about on here and the ones that don't have a clue they have a thyroid problem or are receiving poor treatment and it makes me despair sometimes. You are helping so many with your great posts. Take care xx.

[PinkNinja in reply to editfmrt]

You too. One day perhaps we will be able to educate doctors so that no more people have to suffer from lack of treatment or inadequate treatment!

[lare73 in reply to PinkNinja]

Long story short.....basically TSH is 1.9(0.2-4), ft3 4.4(3.1-6.8) and ft4 11.5(12-22) these were private tests blue horizon, my GP agreed to a 8 week trial of thyroxine 50mcg.

Nhs results were similar but had my at the very bottom of the ft4 range and they did not test ft3.

Started ohh the medication, after first week noticed a difference, the longer I took it the better I became not back to normal but improving slowly.

Then sought a private endo, recommended, who said its unlikely I have a Thyroid problem, I have no antibodies and TSH is in range. So to stop the medicine. I am having further tests for pituitary and coeliac but have been told this will no doubt be normal. (He is currently waiting to be re-accredited to the nhs...make of that what you will!)

My ferritin is up to 42 from 13

Vitamin d was 27 had a 300,000iu oral dose, blood test in a few weeks.

Folate now 10 from 3.3

B12 now 742 from 544

I have supplemented all the above in the last 2-3 months.

I have spoken since to the endo to say I don't want to use his services again, he said let's wait and see what the rests say which he has now agreed I can ask m GP to do to save the expense.

I am in a right quandary...do I continue seeing him? He said he will recommended I discontinue the thyroxine to my GP so won't get prescribed anymore... I do have a referral to dr skinner that my GP did first but as its a long way I didn't ring to make an appointment.. Or third option I have been told about a female endo in Manchester who works privately and nhs who apparently treats normal TSH patients! Arrrgggghhhhh I just want this to bloody end!

Ps I have not had any bloods done yet since taking thyroxine...

[PinkNinja in reply to lare73]

Do you have the thyroid UK list of recommended doctors? Was this doctor one of them? If it was, could you please message me (or any admin) to let us know so we can update our list to say he isn't happy to prescribe to "normal" patients.

If it wasn't from the Thyroid UK list, you can request one here

thyroiduk.org.uk/tuk/forms/...

There may be someone on the list who is near enough to you.

I hope you get your treatment soon. You clearly need it!

[lare73 in reply to PinkNinja]

I have requested the list,

Need to make sure my bloods play ball and make this simple!

Thanks for the replies everyone x

[PinkNinja in reply to lare73]

If you get the right doctor, it won't matter too much what your bloods are like (Dr S, for example) but will treat you as if you are hypothyroid.

Don't forget the argument that blood tests only tell you what is in your blood, not what is in your cells! It's like putting a teaspoon of salt in a glass of water and measuring the concentration and not being surprised that it's exactly what you expected given that you put a teaspoon of water in a glass of water, lol. The salt can't go anywhere so it must be the same. If your cells are not using the thyroid hormones, you have the same situation. You're just measuring how much thyroid hormone you're putting into your body.

I hope that made sense. I fear it my only make sense to me, lol.

[lare73 in reply to PinkNinja]

I am ringing dr skinners secretary tomorrow do make sure they have my referral