Hashimotos - Stopped Levothyroxine + Prescribed... - Thyroid UK

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Hashimotos - Stopped Levothyroxine + Prescribed Chinese Herbs + Sleeping Earlier

Jouleskeys profile image
15 Replies

Hiya,

Was told a couple of years ago that I have hashimotos and have NEVER had symptoms known for it.

I stopped taking Levothyroxin a month ago as it was making me feel horrible - stressed along with crazy weird vivid dreams. Since stopping am feeling great and still not experiencing these effects.

Just got some results back of various tests and despite feeling good the results aren't looking great according to the "Doctors Text Books". Am just wondering if these numbers aren't misread by Dr's and if they are, does anyone have an idea of what could really be going on with TSH that effects T4 levels (i have no idea about my T3 levels)?

A bit more about me, i am a type 1 diabetic and have been for 28 years. This is well controlled and my weight is perfect.

According to Chinese 3000 year old medicine, a traditional Dr mentioned it is a good idea to do this as the liver effects Thyroid function and could fix it. Will see how this works along with taking some Chinese herbal prescribed medicine which I got when I visited my Chinese wife's family in Feb '18. For the last 3 weeks have been going to bed and getting up before 10pm, along with giving my liver a rest by not touching alcohol for 3 months.

This is where I am currently and let's see how this commences over 3 months:

Thyroid function test (X77Wg):

Serum TSH level (XaELV) - Above range - 15.67 mu/L [0.3 - 4.2] - Above high reference limit

Serum free T4 level (XaERr)

11.0 pmol/L [9.0 - 23.0]

Serum urea level (XM0lt)

4.0 mmol/L [2.5 - 7.8]

Serum lipid levels (XE2q7)

Serum cholesterol level (XE2eD)

4.3 mmol/L [< 5.0]

(NOTE)

Non-HDL cholesterol (total chol minus HDL chol) is recommended for

CVD risk prediction; fasting samples are not required for this.

Non-HDL cholesterol targets for patients treated for CVD risk

reduction are

* 40 % reduction from baseline (NICE CG181, 2014) or

* <2.5 mmol/L (JBS3. Heart 2014;100:ii1)

Serum triglyceride levels (XE2q9)

0.61 mmol/L [< 1.7]

Serum HDL cholesterol level (44P5.)

1.48 mmol/L [> 1.0]

Serum LDL cholesterol level (44P6.)

2.54 mmol/L [< 3.0]

Serum cholesterol/HDL ratio (XaEUq)

2.91 [< 5.0]

Serum non high density lipoprotein cholesterol level (XabE1)

Above range

2.8 mmol/L [< 2.5]

Above high reference limit (Coconut oil???)

LFT and BONE Profile

Serum alanine aminotransferase level (XaLJx)

17 iu/L [0.0 - 40.0]

Serum alkaline phosphatase level (XE2px)

73 iu/L [30.0 - 130.0]

Serum bilirubin level (44E..)

12 umol/L [0.0 - 21.0]

Serum calcium level (XE2q3)

2.39 mmol/L [2.15 - 2.6]

Serum adjusted calcium concentration (Xabpk)

2.39 mmol/L [2.2 - 2.6]

Serum inorganic phosphate level (XE2q4)

0.90 mmol/L [0.8 - 1.5]

Serum albumin level (XE2eA)

40 g/L [35.0 - 50.0]

Serum total protein level (XE2e9)

71 g/L [60.0 - 80.0]

Serum globulin level (XE2eB)

31 g/L [19.0 - 35.0]

Full blood count (424..)

Total white blood count (XaIdY)

6.5 10*9/L [4.2 - 10.6]

Red blood cell count (426..)

5.07 10*12/L [4.23 - 5.46]

Haemoglobin concentration (Xa96v)

156 g/L [130.0 - 168.0]

Haematocrit (X76tb)

0.453 1/1 [0.39 - 0.5]

Mean cell volume (42A..)

89.3 fL [83.5 - 99.5]

Mean cell haemoglobin level (XE2pb)

30.8 pg [27.5 - 33.1]

Mean cell haemoglobin concentration (429..)

344 g/L [315.0 - 350.0]

Red blood cell distribution width (XE2mO)

12.7 % [10.0 - 16.0]

Platelet count - observation (42P..)

254 10*9/L [130.0 - 370.0]

Mean platelet volume (42Z5.)

11.2 fL [7.4 - 11.5]

Neutrophil count (42J..)

3.5 10*9/L [2.0 - 7.1]

Lymphocyte count (42M..)

2.5 10*9/L [1.1 - 3.6]

Monocyte count - observation (42N..)

0.3 10*9/L [0.3 - 0.9]

Eosinophil count - observation (42K..)

0.1 10*9/L [0.0 - 0.5]

Basophil count (42L..)

0.1 10*9/L [0.0 - 0.2]

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15 Replies
SlowDragon profile image
SlowDragonAdministrator

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies.

Plus essential to test vitamin D, folate, ferritin and B12.

Your high TSH shows you have thyroid problem and your low FT4

Would expect your vitamins to lower over coming weeks or months and possibly cholesterol to rise

Many people do not get on with Levothyroxine mono therapy. Many with Hashimoto's need some T3 in addition to Levothyroxine or less frequently T3 alone or prefer NDT

Especially if we have other issues going on.

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting.

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

tukadmin@thyroiduk.org

Professor Toft recent article saying, T3 may be necessary for many otherwise we need high FT4 and suppressed TSH in order to have high enough FT3

rcpe.ac.uk/sites/default/fi...

Ruby1 profile image
Ruby1

I’m afraid I can’t comment on your medication, but I’m just wondering why you would change anything if you are feeling well? Was there a problem? Sorry I’ve just re-read and Levo made you feel bad, I see.

I have antibodies, and I ‘think’ I don’t show symptoms. I’ve been on levothyroxine for many years.

I think we could all benefit from less alcohol and more sleep... and probably more exercise while we’re at it :)

Please keep us posted on how you get on. Things can happen slowly and your TSH doesn’t look good, but it would be wonderful if it works out for you.

posthinking01 profile image
posthinking01

I would not recommend Chinese Herbs - as a kidney patient herbs are very heavy on the kidneys and indeed liver.............I would try to sort out why you are not feeling well on thyroid meds and whether you have a deficiency in vitamins or minerals that are causing the thyroid to be unable to convert T4 to T3.

Bluedragon profile image
Bluedragon in reply to posthinking01

Hi, there are some great liver and kidney herbs out there. A Chinese or Western Herbalist will know what to prescribe to support those functions. A full consultation will have been held before prescription made up, of at least an hour. Herbs are balancing. For example, take diuretics- traditional NHS px removes potassium from the body and supplements need to be taken. Dandelion leaf (root for liver) is great diuretic but at same time gives potassium (and other minerals).

Hope that is useful and informative.

With a TSH this high, some sort of replacement should be put into place as well and I agree with others that a full panel of tests needs to be done, probably privately. Medichecks or Blue Horizon I would suggest.

There are herbs that support the conversion of T4-T3 - Myrhh being an example.

posthinking01 profile image
posthinking01 in reply to Bluedragon

I have nothing to say on your reply ..................other than I totally disagree. As someone who cherishes their kidney and liver function which is already under pressure from being a thyroid patient - gently does it.................if we were meant to eat dandelions it would be on our dinner plate..............I remember seeing a World in Action programme way back in the 1980's about a woman who took dandelion etc. and her skin peeled off the whole of her body - I have never forgotten it.......................hence my caution.

Bluedragon profile image
Bluedragon in reply to posthinking01

Interesting, I haven’t heard of that program. I of course respect your opinion.

Dandelion leaves make a good addition to a salad and the flowers can be eaten too. It is interesting what foraging throws up as edible- and free.

Have a good day.

Angel_of_the_North profile image
Angel_of_the_North in reply to posthinking01

But dandelions always used to be on our dinner plates. My dad used to grow them and blanch them like chicory, It's just recently that we've decided that real food means fish fingers and McDonalds. I suspect the Word in Action programme was about as accurate as the ones that show people going orange from eating carrots or blue from taking colloidal silver (all in quantities that no normal person would entertain) and what about the woman who drank all that water at a WII promotion and (nearly) died. Dandelions, carrots and water are obviously too dangerous to be allowed. I know a girl whose skin peeled off because she used tampons (toxic shock). No one knows anything about nutrition, see meaningness.com/nutrition-r...

Jouleskeys profile image
Jouleskeys in reply to Bluedragon

Ahh, Myrhh.. I have just started with Frankensence which is great :)

Thank you, will see what I can do re more tests and await this next 3 months. I am actually a little suspicious that I am over sensitive to green tea from Shanxi. I have read that the catechins in green tea may cause n imbalance in their immune system's T cell and B cell antibody responses, possibly resulting in more severe thyroid disorder symptoms.

Just a little info

Jouleskeys profile image
Jouleskeys in reply to Jouleskeys

I am just wondering how many people work for pharmaceutical companies here that push fear mongering?? I believe that going back to nature is the way forwards for everyone, whilst drugs will just hide true underlying issues. The issue here in thyroid problems is in the stomach... look up leaky gut and I hope we all can work together to find an easy way to be well rather than taking toxic drugs for life.

posthinking01 profile image
posthinking01 in reply to Jouleskeys

Hi there well I certainly do not push big pharma as I am allergic to most if not all drugs and I have had serious health issues so i have had to virtually look after myself by getting myself tested for deficiencies every 3 months and replacing those deficiencies - and I have managed to stay alive and defy the medical profession who are astounded at what I do......but I still don't agree with herbs..............but that doesn't make me a big pharma adovcate far from it but I do believe as the body gets unwell it drags out vits mins and hormones that it needs to keep the body as healthy as it can - for example I am a diagnosed adrenal insufficiency person amongst other things - almost Addisons the way they behave and being knowledgeable about nutrition I noticed a scar on my stomach was getting wider and wider - gums bleeding - etc. etc. - thank goodness I had (as sad as I am) been reading a book on Scurvy and how long it took the Dr who discovered it was a lack of Vitamin C to convince the authorities - over 200 years or something can't remember exact 'yearage' - I then did some research and found out that Vitamin C is grabbed by the adrenal glands to keep you alive if they are dysfunctioning which mine were...............took it and the scar returned to normal. Needless to say I ensure I take Vitamin C to support the adrenals...............although not too much as it depletes Vitamin B............hope this clarifies.

Jouleskeys profile image
Jouleskeys in reply to Jouleskeys

Oh, and am popping out to get some Myrhh. Thanks for the tip :) @Bluedragon

marsaday profile image
marsaday

You feel well off thyroid meds because your body is working as it should.

You need to get ft3 tested but it is ilkley your t3 levels are good and so you feel fine.

Longer term you will eventually feel not so good as the body struggles to keep t3 levels high. How long this is I don’t know but could be years.

When you take t4 the tsh drops and your conversion to t3 drops and so you feel worse. Lots of patients experience this and have to go through an adjustment period. Some never feel as good

eeng profile image
eeng

Can I ask what dose of Levothyroxine you were taking before you stopped it?

Generally people are prescribed Levothyroxine because their thyroid is not producing the hormones their body needs. It takes 6-8 weeks for thyroid hormone levels to stabilise in the body when we change dose, so for 6-8 weeks after you stopped taking Levothyroxine you still had some benefit from the hormone you had been taking. Lots of people report that Levothyroxine makes them feel unwell, and it is common for these people to feel better when they stop taking it, however sooner or later, and for you it probably won't be long now, you will start to get hypothyroid symptoms.

What brand of Levothyroxine were you taking? Some people respond badly to the fillers in the pills, and recent reports on the site show that Teva brand of Levothyroxine seems to make people feel unwell. You can tell if it is the fillers that made you feel unwell - if you felt better almost immediately (within 24-48 hours) after stopping the Levothyroxine. As I said above, the hormones stay in your system for 6-8 weeks, so if the hormones were making you feel bad you would feel better gradually as the extra hormone left your system. People often feel unwell on Levothyroxine until their dose is correct - it's a very delicate balance and can take months, even years, to get right. Too much or too little can give you symptoms like sleep disturbance such as you describe.

Unfortunately your body needs thyroid hormones to function. If your body is not making enough hormone to sustain its functions no amount of herbs will replace the hormones your body needs. Your pituitary has already noticed that your thyroid hormones are low, which is why your TSH is over 15. Your cholesterol levels are also rising, which is a consequence of not having enough thyroid hormones, and will not be helped by adjusting your diet. Eventually you will have hypothyroid symptoms, and in the very worst case you risk falling into a 'myxodema coma' and dying.

Jouleskeys profile image
Jouleskeys in reply to eeng

Was taking 3/4 of a 25mg tablet which got my TSH down to 6, any more of this tablet would give me nightmares and create anxiety without any personal issues at all, which is very strange - I generally am a happy chap and that inner dark weird feeling is not something I would ever want to hold.

The drug company is Wockhardt btw.

I believe there is an alternative way through finding foods that adds the hormones back into the system (ie shell fish) or by taking away something I am over sensitive to from my diet (ie sweets, too much tea/coffee, lack of sleep, worry, lack of exercise). I do not believe at all that the only way to survive is with pharmaceutical drugs, by no means!

Indeed without research and doing anything at all is likely to have disastrous effects, though drug companies have put in our heads that all we ever need is a pill, every day for the rest of our lives. No thank you very much.. Ideally need to look further into natural ways and repair the cause.

Am grateful for this site and hope we can work together to all be well ;)

eeng profile image
eeng

The traditional way to treat hypothyroidism was to take NDT (Natural Dessicated Thyroid) from pigs or cows. Since you only take a small amount of Levothyroxine you could try Thyro Gold, which is sold as a food supplement and has quite low levels of hormone in. I believe it comes from grass fed beef cattle. Bear it in mind if your hypo symptoms return. You won't get it on prescription, but if you are determined not to take Levothyroxine then you will need to consider all other possible options, since the only way of getting hormone naturally is from other mammals. I don't think shellfish have a thyroid.

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