Huge improvement with self treatment with T3...but

[RexandBoone]

So what seems to the usual path of feeling awful (fatigue, brain fog, no oomph) and trying to get a GP to do extra tests because TSH is "normal" led me in 2015 to get my blood work done privately. I should add that I had been diagnosed as hypothyroid as far back as 1996.

My private results:

Total Thyroxine (T4) 72 (range 59 -154)

TSH. 1.83 (range 0.4 - 4.5)

Free Thyroxine 16.3 (range 10 - 24)

Free T3. 3.8 (range 4 - 8.3)

Thyroglobulin antibody. 28.7 (range 0-115 (negative))

Thyroid Peroxidase Antibodies 65.5 (range 0-34)

The GP's NHS results:

Free T4 16.5 (range 9 - 24)

TSH 1.43 (range 0.34 - 5.4)

It was interesting to note that at least the meagre NHS results were similar values!

I gave my private results to my GP with what I thought was blindingly obvious Hashimoto's because of the TPO result and she said that because the NHS TSH value was "within range" there was no need to change treatment. I was on 125mg of Levothyroxine.

I decided I had to do something (anything!) and found a source of T3 (Tiromel) over the internet. I gradually increased to 3 x 25mg which definitely made a noticeable difference. My family said I seemed more "with it". I ended up taking 2.5 x 25mg + my 125mg of Levothyroxine and felt more energetic and sharper than I had in a long time. It took a year and nicely I also lost weight. I did of course change my GP.

I have since moved and my new GP wants to tinker with the settings. He knows I self medicate with T3 and after the first tests with him I agreed about lowering my Levothyroxine to 100mg (can't lay my hands on those results). I thought he made a good point about the risks of over medicating etc. Now I believe I have been patronised with "me doctor, you listen, you no ask questions" attitude. He insists my bloods are done again after 6-8 weeks.

The results from late October are:

TSH <0.010 (range 0.20 - 4.50)

Free T4. 11 ( range 9-21)

He's freaking and lowers my NHS Levothyroxine prescription to 75mg. I'm still taking my 2.5 x 25mg Tiromel. This is now worrying me as I don't feel as sparky as I used to and my family say I appear rather scatter brained. I go back and see the GP and tell him that I want to go back to taking 100mg of Levothyroxine as I don't feel as good as I did and he said no. To his slight credit he ordered up more blood tests to investigate and these were done in December. I haven't been able to get my copy yet but I was told over the phone:

TSH <0.01

T4 10.00

T3 3.1 (no idea of range, just told it's high).

First time I'd EVER had the NHS do a T3 test.

vitamin D was low (prescription provided) and iron was high. The iron was re-tested and now is ok (such technical terms) and another set of TSH was done too.

Btw, I am trying to get copies of these but I have to fill out a GDPR form for action by the practice manager and they won't send via email!

So, and sorry this is long winded, I was told that the GP wants to discuss the results as my levels suggest the dosages need to be lowered. I'm assuming he will now say to put me on 50mg.

Now I come to what's (mainly) bothering me about all this. I have been feeling great on a combination of T4 and T3 (125mg and 62.5mg respectively) and want to know how or what treatment and monitoring should be done for Hashimoto's? I am alarmed that my dosage is being altered on just TSH and no TPO and until I read this forum I had been told that GPs couldn't do TPO. I have no confidence that my treatment is heading in the right direction.

I'd welcome advice and feedback. Thank you

[My advice to myself is find a good private endocrinologist, but in the meantime...]

[shaws]

Doctors know little. The blood tests are for levothyroxine (T4 alone).

If we take NDT or add T3, the results don't correlate and they get confused if TSH doesn't "fit" within the ranges.

I also treat myself and we have the 'freedom' to be well again.

This is from an expert in all Hormones:-

"TSH is not a thyroid hormone and is not an appropriate guide to thyroid replacement therapy.

The hypothalamic-pituitary secretion of TSH did not evolve to tell physicians what dose of inactive levothyroxine a person should swallow every day. A low or suppressed TSH on replacement therapy is not the same thing as a low TSH in primary hyperthyroidism. IF you continue to suffer from the symptoms of hypothyroidism, you have the right to demand that your physician give you more effective T4/T3 (inactive/active) thyroid replacement therapy. Your physician can either add sufficient T3 (10 to 20mcgs) to your T4 dose, or lower your T4 dose while adding the T3. The most convenient form of T4/T3 therapy, with a 4:1 ratio, is natural desiccated thyroid (NDT-- Armour, NP Thyroid, Nature-Throid). If you have persistent symptoms, ask your physician change you to NDT and adjust the dose to keep the TSH at the bottom of its range-- when you have the blood drawn in the morning prior to your daily dose. This may be sufficient treatment, but IF you continue to have persisting hypothyroid symptoms, and no hyperthyroid symptoms, ask your physician to increase the dose to see if your symptoms will improve, even if the TSH becomes low or suppressed.

hormonerestoration.com/

Don't let incompetent doctors ruin our health completely due to them following 'guide lines' when the guide is leading you into losing your health.

[RexandBoone in reply to shaws]

Thank you! I wish I'd read the tips on the forum about not taking meds before blood tests. I take my Levothyroxine at bedtime and my T3 in doses throughout the day. I always get try to get them done around the same time, but didn't stop taking the nightime one, I just held off on the daytime T3. Irritatingly too, my new pharmacy gives me different brands every time! I thought it was a one off but having had 3 prescriptions filled (I'm only given 1 month at a time!) the brands are always a jumble. I should be able to speak to them at least.

[shaws in reply to RexandBoone]

If you take a night dose and having a blood test next day miss this dose and take after blood test and take night dose as usual the same day.

Taking T3/T4 can be take once daily as recommended by an Adviser who was an expert in the use of T3. He himself took 150mcg of T3 daily (in the middle of the night).

He stated that it beneficial in that your T3 receptor cells (of which we have millions) are then saturated and the work of that one dose lasts between one to three days. Splitting doses means that it might be difficult to find a 'window' in which your stomach is empty before and after taking it. It also restricts our daily life as we are on thyroid hormones for ever. I take one daily dose, am well and symptom-free and have a normal life without worrying if/when next dose is due.

This is an excerpt:

"Shouldn’t patients divide their daily dose up and take part of it at least twice each day, or instead use sustained-release T3? It seems that this would allow the effects of T3 to continue through the day rather than stop midway or in the evening?"

My pharmacist supplies a particular brand of a prescription (not to do with hypo) when I found a previous one didn't make me feel very well. Tell the pharmacist what you want him to source for you. Sometimes it is the fillers/binders in the medication which doesn't suit us.

web.archive.org/web/2010103...

Go to the date November 9, 2005.

Shouldn’t patients divide their daily dose up and take part of it at least twice each day, or instead use sustained-release T3? It seems that this would allow the effects of T3 to continue through the day rather than stop midway or in the evening?

Dr. Lowe: The short time that T3 is in the circulating blood isn’t the limit of its beneficial effects on the body. When T3 binds to T3-receptors on genes, the binding regulates the transcription of mRNAs, and the mRNAs are later translated into proteins. The transcription and translation initiated by the binding of T3 to T3-receptors occur in waves, and these waves far outlast the T3 that started them at the chromosomes. Moreover, the newly synthesized proteins themselves far outlast the transcription and translation. As a result, a single dose of T3 will be long gone from the patient's system before he or she experiences most of the benefits of that dose—a molecular and metabolic yield that may smoothly spread out over one to three days. The "rocky road" ( August 7, 2001

[SlowDragon Administrator in reply to RexandBoone]

You should ALWAYS insist on the same brand of Levothyroxine and same brand of T3

Many people find they are not interchangeable

And many, many patients really react badly to Teva brand in T3 or T4

[SlowDragon Administrator]

Your GP practice is being obtuse about giving you your results

You are legally entitled to printed copies of your blood test results and ranges, you don't need to fill in a form (other than to register for online access)

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Email Dionne at Thyroid Uk for list of recommended thyroid specialists after Jan 3rd

Your vitamin levels are dropping BECAUSE you are under medicated.

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially with Hashimoto's

All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

If also on T3, make sure to take last dose exactly 12 hours prior to test

NHS GP will be clueless about reading a test when someone is on T3. TSH is almost always suppressed.

Your FT4 and FT3 look very low. Obviously you need the ranges on these results to confirm that

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

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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

[RexandBoone in reply to SlowDragon]

Thank you! I've replied above about not being clued up with blood tests and not to take my meds beforehand. Duh. I could kick myself.

You hit a chord about them being clueless how to treat Hashimoto. I took my private blood results for him to see the TPO etc and rather than photocopying it, he just wrote the figure 65 on a scrap of paper and that was the end of that !

When you say "pay extra for blood draw" do you mean the testing company does that or my local practice? I managed to blag them from my last practice when they took my blood for the NHS tests.

[SlowDragon Administrator in reply to RexandBoone]

I can't get my GP practice to draw my private tests, as I don't get NHS testing any longer. My GP agreed it waste of time as they won't test FT3 (even though I am on T3!)

So I now choose to pay the £25 for private blood draw at private hospital, where I can get it done at 9am

When taking Levo at bedtime, ideally 2 days before any blood test you temporarily adjust time of medication

Eg if testing Monday morning:

Saturday evening dose Levothyroxine delay until Sunday morning. Sunday evening dose of Levothyroxine delay until immediately after blood draw on Monday morning. You can still take Monday evening dose as per normal

T3 - day before adjust timing of doses so that last dose is 9pm Sunday evening, assuming blood draw is 9am Monday. Obviously don't take early morning dose until after blood draw

I normally take T3 at 7am (10mcg) and 3pm (5mcg) and 11pm (5mcg)

So day before test I adjust time slightly. 6am, 2pm and 9pm

Absolutely essential to test vitamin D, folate, B12 and ferritin at least annually

Are you on strictly gluten free diet?

[RexandBoone in reply to SlowDragon]

Thanks, very helpful info.

I'm not a gluten free diet and I'm waiting for a self test to arrive. One of my daughter's is gluten intolerant and I've not wanted to test because I don't think I have a problem. However, if I can test for it and eliminate, all the better.

[SlowDragon Administrator in reply to RexandBoone]

Getting coeliac blood test, but this is just to rule only coeliac out

There's no easy test for gluten intolerance. The only way to know is to try it for 3-6 months.

Many of us with Hashimoto's test negative for coeliac, but turn out to be very gluten intolerant , even with absolutely no gut symptoms.

[Hidden in reply to SlowDragon]

How can it be determined that you're intolerant though if you have no symptoms?

[SlowDragon Administrator in reply to Hidden]

When you go gluten free you start to feel better, sometimes significantly

And /or antibodies slowly drop

[Hidden in reply to SlowDragon]

Thanks for the reply. I've gone gluten free before and felt better, but I think it's actually due to cutting out many junk foods and subsequent weight loss that made me feel better. It's hard to untangle what causes what in my opinion.

[SlowDragon Administrator in reply to Hidden]

Helpful video

m.youtube.com/watch?v=bbfYc...(Not working as expected?)

[MissGrace]

I’ve posted the below before a few times so apologies if you’ve read it already, but just in case it helps - I’m only on T4, but you might find the comments about hashimotos and over-medication useful in your battle to be well.

I see an endo privately which I know isn’t an option for everyone, but he’s very understanding and is a thyroid specialist.

Last time I went to see him my blood results showed my TSH is now plunging into the nether regions, my T4 and T3 are about 50-55% of the way through the range and I still feel like cr*p, though not as cr*p as the cr*ppest I’ve felt. He is happy for me to continue to increase Levo. What he said was interesting - he said most Doctors understand underactive thyroid as that is relatively straightforward, but they don’t understand hashimotos, so they just treat it in the same way as underactive thyroid but it isn’t the same. He said that the TSH does strange things with hashimotos as the pituitary doesn’t know WTF is happening as the thyroxine from the thyroid waxes and wanes. So basically the pituitary loses the plot and TSH tends to go low. This will be exacerbated in your case as you are adding T3.

My endo also acknowledged what I have always thought that despite doctors saying synthetic thyroxine is just the same as our own, it isn’t and many struggle to convert it. This means the TSH responds to the level of T4 and goes low, but we actually struggle to manufacture T3, so need to take more of the synthetic T4 stuff than we would have to produce of our own - even more than the normal range for some people to make/convert into adequate active energy and therefore to feel well.

The combination of hashimotos and synthetic T4 creates a perfect storm. Therefore other than T3, patients should not be assumed to be well just because they fall within the ranges and a low TSH is fine if there are no signs of being over medicated e.g. high FT3, heart racing, tremor etc.

There are physical tests your doctor can do to check if you are over-medicated - pulse rate, check the heart rhythm, extend your arms and see if there is tremor in the hands etc. You can take your temperature and heart rate on waking every morning and record these to show your doctor as proof. Despite my TSH being low, on waking my temp is usually 35.2 and my heart rate 56!

Do battle - and good luck. Tell your doctor to dose the patient not the blood test. If you were over-medicated, believe me, you would know. When I was over-medicated it was scary, heart racing and pounding if I just stood up, feeling nauseous etc- you would want to reduce if that was the case!

Good luck. 🤸🏿‍♀️

[RexandBoone]

Thank you! I have had to read this several times to follow the train of thought - it hits the nail on the head for me. You are explaining EXACTLY the situation. He is NOT taking the Hashimoto's into the equation (because he doesn't know any better and never will with his dogmatic attitude). Thank you for the practical tests I can do and record results. I shall start doing that. I did over medicate with the T3 and had heart flutters so I can spot that. I've also noticed that if I forget to take my vit D and take it at nightime with the T4, I get horrid heart racing. I've since read on here about that!

I will persevere to get him to treat ME and not my TSH but will go the private endo route once I can prise all the results out of my practise or at the least get the meds to be consistent.

[RexandBoone]

Further question: what blood results are important or of use for treating known Hashimoto's (not diagnosing)?

And this then begs the question that if I feel well and I have no obvious over-medicating symptoms, why alter any of the meds or dosages?

[MissGrace in reply to RexandBoone]

My endo likes TSH, FT4 and FT3, with regular tests for vitamins and iron too. He looks at the range of the FT3 closely with me - it shows I am not a good converter as my T4 increases as I raise the dose with little change to T3. My antibodies were off the scale when first tested and although he never asks for retesting (I don’t think there is a lot of point, I’m clearly Hashimoto’s), he always refers to them and how they make my thyroid issues more difficult to treat and stabilise.

[Ksnin]

I'm on NatureThroid 90mg, with Hashimoto's. Thankfully I have a Dr that doesn't follow TSH, as mine was always normal. But my antibodies came back positive, and my T3 in the low end range. Since being medicated, my TSH always comes back.01... But my doctors say it's an artificially suppressed number with the medication, so not to go by it. Sounds like you might need a new dr. I also have lyme disease, and know no sugar, alcohol, dairy or gluten has made a huge difference. The Hashimoto's Protocol by Izabella Wentz is a great book on how to manage it.

[Rosebud1955 in reply to Ksnin]

Rosebud1955.

Hi, i’m new to this forum, not sure if my format is correct. I too have Chronic Lyme and is struggling to stay alive. I had total thyroidectomy 18 months ago and have not felt well since. My endocrinologist has no clue how to treat thyroid patients. He only focuses on tsh, I constantly have to educate him about my low results. I’m struggling with headaches, fatigue, cold sensations, weight gain, muscle cramps and pain, and lots more. I have become a recluse as I have no energy to even go for a walk. I’m a mess. He has me on 112mcg levothyroxine and 10mcg t3. I actually started feeling a little bette since starting t3 four weeks ago. I feel that I could benefit from twice the dose of t3, he keeps reeling me my tsh is too low (0.05). Now he wants me to decrease my t4 to 100mcg. My labs are way at the bottom of the chart. I will post them some time for other members to comment. I’m so exhausted, it takes effort to even write these lines. I’m having a difficult time concentrating. I’m so depressed about it all, I cry a lot, I just need to feel well again.

Please hang in there and stay positive. I have received so much support, just reading the posts. I would like to be more active and participate more, but i’m just too sad at this time in my life. I will keep reading, so much to learn. This forum is a blessing.

Happy New Year to everyone, I wish everyone better health in 2019. I live in Canada.

[RexandBoone]

Thank you, very interesting. I wish my GP would realise he's playing with a cocktail! (Emphasis on GENERAL practitioner). Ishall look up that book.