Should I give up?

[Sammy_H]

Hi, I am new to this and I have come here because I really feel like giving up with why I continue to feel so unwell.

I was diagnosed with hypothyroidism in 2012 and since being on Levothyroxine I have never felt well. I believe I am a poor converter of T4 to T3 since my Free T3 level is almost always in the bottom part of its range - but I don't discuss this with my current endo since he tells me my Free T3 level is irrelevant.

My current results show overreplacement of thyroid hormone but without a free T3 result I do not want to reduce. I probably sound like I am being uncompromising with my endo, but I am torn between giving up and fighting and one day something has got to give.

Taking 175mcg Levo. Thanks for reading.

TSH 0.02 (0.2 - 4.2 mIU/L)

Free T4 20.8 (12 - 22 pmol/L)

[Nanaedake]

I agree with your view that you need to know your FT3 blood test result before agreeing to a dose decrease because your FT4 is in range which indicates you are NOT over-replaced. Not sure why the Endo thinks you are on the basis of these results except that he/she is dosing by the TSH which is incorrect because if FT3 and FT4 are in range then it simply shows that your pituitary gland is not prompting the thyroid to produce more thyroxine because there is enough available. TSH is a pituitary hormone and not a thyroid hormone.

I would stick to your position and refuse to reduce your levothyroxine dose unless the Endo is prepared to test FT3 to prove that it is above the reference range and only then consider any changes.

FT3 is not irrelevant and if your Endo thinks you are over-replaced he/she should test it to find out whether his/her hypothesis is correct because your FT4 does not indicate over-replacement.

If you are still feeling unwell despite these blood test results then I would investigate your vitamin levels as all can be deficient with hypothyroidism. They need to be at least half way in range with B12 high in range in order for thyroid medication and even our own thyroid to function well. It seems that low nutritional levels makes us feel more unwell than it would in people without thyroid disease.

You can get your TSH, FT3 and FT4 levels tested through online labs such as Medichecks and Blue Horizone. They are listed on Thyroid UK website and people on this forum use them. Look out for special offer on Thursday, I think it is...

Your GP should be able to check:

B12

folate

ferritin

Vitamin D

Take a list of symptoms to your GP and explain that you have found out that people with thyroid conditions can be deficient in all of these.

Some useful links

The importance of vitamins and thyroid function

americannutritionassociatio...

vitamins advice

rt3-adrenals.org/index.html

Vitamin D deficiency

ncbi.nlm.nih.gov/pmc/articl...

When you get vitamin results then post them here for good suggestions.

[vivbr in reply to Nanaedake]

So there you go expert advise From à forum, better than my doctor in any case.

[Sammy_H in reply to Nanaedake]

Thanks I have results of TPO and TG antibodies, also vitamins and minerals. My previous endo tested my Free T3 all the time and so does my GP. The endo I am currently with is based in the same hospital as my previous endo so surely the same lab is being used?

[kere]

I never felt at all well on synthetic thyroxine, no matter how many times we tried to tweak my dosage. Have you tried natural desiccated thyroid hormone? Your body needs T1, T2, T3 and T4. I got my health back when I started taking WP Thyroid. No nasty fillers to interfere with the hormone getting into the cells. Don't give up.....I know it's a difficult journey, but your quality of life is worth fighting for. Maybe you could see a functional medicine Dr who will happily get all the tests done that you need and prescribe NDT?

[Sammy_H in reply to kere]

Thanks I was shown to have a clinical need for T3 but was taken off it by my current endo. Would make sense if he doesn't think much of Free T3 and doesn't readily test for it.

[shaws in reply to Sammy_H]

If you have a clinical need, it should not have been removed. Even the British Thyroid Association stated that it could cause more problems for the patient for but the 'perfect excuse' had presented itself by the cost of T3 alone, rather than prescribing an alternative T3 on a named-patient basis. they've left patients high and dry.

[Sammy_H in reply to shaws]

Left a message with the endo's secretary a day ago about the whole thing - and still no call back. Probably think I am a problem patient now.

[Nanaedake in reply to Sammy_H]

Don't worry about them thinking you are a problem patient. You're not getting the help you need from them in any case. You've got all this forum for support. I'm sure they are aware of the National debate about T3 and recent consultations. You are not the only 'problem' patient they will be encountering, probably besieged at the minute.

[CSmithLadd in reply to Sammy_H]

If it was shown you have a clinical need for T3 and then Dork, M.D. took you off the very thing you need for wellness, then he's a dangerous detriment to your health and to others.

Your current Endo shouldn't be practicing medicine. Tell another doctor what was told to you by him about your Free T3 levels even though you have been shown to clinically need T3. In fact, tell everyone. Write the NHS about it. What he said was either idiotic or psychotic. No matter which, he will still have to answer for it.

Some doctors have little brains that can't read between the lines of protocol when necessary. Others are just full of themselves. Your current doctor seems to be both.

Be proactive in your health. It's your life. You shouldn't have to beg for that which you need. Since very few conventional doctors understand the need for and use of T3, your case is indicative of one needing the care of a doctor of functional medicine. They do understand T3.

You'll be fine. You just need the right professional for the job.

Healing Hugs!

[Hidden]

When on T4 only, you usually need your free T4 levels to be in the upper part of range, or even at the upper normal limit, in order to ensure that enough T4 is converted to T3...however, if you are a poor converter, no amount of T4 will make you feel better.

Would you consider self-medicating? Many thyroid patients are forced to as their doctors refuse to listen to them. Most doctors are TSH obsessed and consider your free Ts (the actual thyroid hormones) irrelevant.

Both synthetic T3 and NDT are available online from several reputable sellers.

The reason I am suggesting this is that, even if you found another, more open-minded doctor, it feels like you've wasted enough time feeling poorly...

[Hidden in reply to Hidden]

I think this article explains things very well:

restartmed.com/tsh-levels/

I like this statement very much: "if your TSH is above 2 you are hypothyroid, period".

[Sammy_H in reply to Hidden]

Thanks I was shown to have a clinical need for T3 and my previous endo said I would benefit from it. It took a while to feel better on it but my quality of life has improved. I am nervous to take T3 consistently because I have had results showing over medication. I am worried about going over range and being told off by my GP/endo again.

[Hidden in reply to Sammy_H]

I don't think that taking T3 consistently will automatically lead to overmedication, but simply taking more T3 than you need...the fixed T3 to T4 ratio in synthetic T3 meds and NDT is not ideal for everyone. It would be a shame for you to go off T3 altogether simply because you are worried about taking too much, especially if it makes you feel better...however, in my experience, even low doses of T3 tends to suppress the TSH, but that should not be the criterion used to determine whether you are overmedicated, but rather your FT3 levels along with symptoms.

[Sammy_H in reply to Hidden]

No my current endo thought this from previous results. I have only taken T3 for one day since then. I am afraid to do so again in case it gets his back up. But is it worth pleasing my endo in getting my TSH above 0.2 for the sake of feeling unwell? I might have to do this without his approval. I would see my previous endo if I could but my GP refuses to let me travel to see her. Surely patients travel from all corners of the country to see a specialist? I don't understand what's different in my case?

[Hidden in reply to Sammy_H]

I agree...for instance, patients travel all across Europe to see so called Hertoghe doctors in Belgium (as not many other doctors prescribe NDT or recognise adrenal fatigue).

[Hidden in reply to Sammy_H]

Please yourself, not your endo it's your body after all!

[CSmithLadd in reply to Sammy_H]

The problem is that most doctors are unfamiliar with reading tests for a patient who is on T3 only (even those on T4, for that matter). They are obsessed with TSH figures which have no bearing at all after TSH has dropped to 1.5 After that it is useless information that only serves to get in the way of treating a patient properly.

They see TSH lower and lower (it always does when the body is receiving thyroid hormones). Their numbers are off. Healthy people have a TSH of 1.0 or less. So it's no wonder doctors panic when they see your TSH begin to blip out. They are ignorant. They know not that TSH fluctuates all the time and it is not a reliable tool for relaying thyroid function. TSH was never supposed to be used for that purpose at all.

T3 lasts just a short time in the body. It's very easy to correct as your body tells you when you are taking too much. The signs will be there. The thing is that the GP/Endo who told you these things hasn't a clue about what he's doing.

Most of them have no clue how to treat except by numbers. You are not a number. None of us are. Doctors of conventional medicine are not trained in the use of T3. It takes too much of their time to try to shorten their learning curve and then they still never understand it. They can't understand because they know very little about the endocrine system. They don't know how the body works and what it needs to function properly.

Instead, they are trained that every dysfunction is a disease in itself and must be hit with a pill or two that could cause worse issues. They do this with no regard for establishing just why a problem in the body is occurring. This is why they will never be able to successfully reverse the epidemic of hypothyroidism.

They unknowingly perpetuate it with their ineptness.

Unlike T4, if you were to take too much T3 you'd be the first to know. You don't need a test to recognize it. All you need to know are the signs and then reduce the next dosage. T3 is all about getting the dose correct for the particular time. If you overdo it, in a few hours that will be gone.

Easy peasy.

Your doctor does not have your best interests at heart. He doesn't care. There are lots of doctors like him. I've met many.

Functional medicine is what you need. It's what most need.

Healing Hugs to you!

[shaws in reply to Sammy_H]

T3 is a safe thyroid hormone replacement. T4 we can do without but it has to convert to T3 but doesn't always provide sufficient or we cannot convert optimally. We can survive without T4 but not without T3 as it is T3 which permits our body to work smoothly and efficiently. Any thyroid hormones if we take too much will give unpleasant symptoms, that we'd reduce ourselves next day, or miss a day's dose altogether.

I am on T3 only and my blood tests are always fine because I leave just over 24 hours between last dose and test. The best of all I no longer have crippling symptoms.

thyroidscience.com/hypothes...

[kathmax]

Sammy what symptoms do you have ?

[Sammy_H in reply to kathmax]

Symptoms list -

Tiredness, constipation, pins and needles, breathlessness, goitre, hair loss, feeling cold, insomnia, joint pain, dry skin, puffy eyes and ankles, heavy periods, depression, memory loss, confusion, tinnitus, numbness and tingling in legs and feet, flaky nails

[TSH110]

Sorry to hear you are feeling so unwell on Levothyroxine. This was also my experience no matter what doseage I took I still fell very poorly after two years on it. It was affecting my ability to do my job and every aspect of my daily life. I decided to take NDT (Natural dessicated thyroid) and found within a short time my health was very much restored. I also went gluten free. Oddly other hypothyroid members of my family have/had no problem with Levothyroxine. I have a gene combination on DI02 which reduces the body’s ability to convert T4 to T3 so perhaps this is why I felt so dire. NDT has T3 in it as well as T4 and others already mentioned. You can get tested for the DI02 mutation there is a link on throid uk main page. It is quite expensive. I looked at my raw data on 23&me to find out, so that is another way to determine this.

I decided the NHS was never going to do anything to help me get fully better. I had already suffered enough so I had nothing to loose and other options should be investigated. I am glad I did this.

In answer to your question:

No you should not give up! There are other things you can try to restore your health

🍀☘️🍀

[Sammy_H in reply to TSH110]

Thanks for reply, I left a message for my endo with his secretary and despite feeling inward anger and frustration for not having my Free T3 tested (for a third time under his management) I calmly and politely explained that without a Free T3 result I am not prepared to reduce my dose. Also I was informed of the dose change in a letter sent to me and I felt that because he had written the results at the bottom of the letter I was not allowed to have an informed decision on my dose. It was as if he was saying "here are your latest results, you are reducing whether you like it or not". He even put my TSH and Free T4 round the wrong way! I thought if I had a Free T4 of 0.02 and a TSH of 20.8 I would probably need to go to hospital!

The secretary hasn't gotten back to me yet!

[The_will_of_Jill in reply to Sammy_H]

Good for you, keep persisting until you get the help you need.

🦋

[Sammy_H in reply to The_will_of_Jill]

Thanks Jill, I have had moments where I feel confident enough to reinstate my T3 regardless of what the endo has said but when my TSH comes back below range and I get voicemail messages from the endo saying to reduce I think "I better not take the T3 again." But the T3 has helped keep me in work, most of my symptoms clear up. I feel that this guy is destroying my livelihood with his views and opinions. Maddening!

[The_will_of_Jill in reply to Sammy_H]

I know how you feel. Years of my life have been wasted. I’m not exaggerating. I wish I had tried harder to not only question, but have enough knowledge, to challenge my doctor right from the early stages after being diagnosed.

I did buy a book back then (about eight years ago) but it was hard to get through it, and I gave up.

All I really needed this whole time was support and understanding, from others who’ve been through it.

It has nudged me into believing what my gut was telling me all along.

I still have a lot to learn. But for me taking my whole days worth of THR three hours before the test was not working. I finally disobeyed her instructions this last set of bloodwork and got some different results I’ve gotten as many copies from over the years as I can, but they refused to show me the original blood work done to determine that I was hypothyroid.

Sorry for rambling. I’m firing her.

((Hugs)) and hang in there.

I’m doing so much better now than I was this time last year that’s for sure!!

🙂

[Sammy_H in reply to The_will_of_Jill]

So sorry to hear of your battle. I had not been feeling well 8 years prior to diagnosis - I was 18 years old at the time. I had inklings of feeling ill, for instance getting low blood sugar symptoms if I missed lunch, being moody for no reason. I was threatened with disciplinary hearings at work and suggested by managers I seek counselling. When I was diagnosed officially it was a shock but not a shock if that makes sense! Then my previous endo switched me to T3 and levothyroxine and it was like a light had been switched on!

[TSH110 in reply to Sammy_H]

Sammy_H sneaky so and so - good for you to challenge the endo and refuse to kowtow!

I was left floundering all on my own with a TSH of 110 (it was a fight to even get a thyroid function test but I stood my ground and would not take antidepressants for an answer) after it had shot up to zero in my final and truly horrendous hyper bout before entering eternal hypo with a measily 20mcg Levothyroxine. I thought I was a gonner I was so cold death would have been a merciful release from living hell (minus the warmth!). My two whippets got on top of me to keep me warm how on earth I looked after them in that condition I have no idea. I hoped they’d have the common sense to eat me if I pegged it but I was amazed to wake up feeling just a tiny bit less cold the next day after lying there praying to die. Took months to get a scan despite several relatives having lymphoma of the thyroid (not me thank goodness) it took 9 months to get my bloods in range and I still felt ill after two years on Levothyroxine. No idea what my Free T4 was it must have been extreme at both ends of the scale in a matter of days! I must be a living miracle when I think about it now.

[Chippysue]

It’s the whole picture, it’ took me 5 years, gradually working through different things, if I listened to doctors I would still be half bald in bed!

Levo is not for everyone.

Seeing a good. Itritional therapist would be great.

[Sammy_H in reply to Chippysue]

Thanks, I was under a nutritional therapist before who recommended I take 11 supplements without testing me. This experience has left me nervous about seeing a different one.

[Chippysue in reply to Sammy_H]

Whereabouts do you live?

Maybe someone could recommend someone.

There is so much more to do - testing for Lyme for example

[Sammy_H in reply to Chippysue]

South West UK. How do I recommend? Do I put up a new post? Thanks

[Chippysue in reply to Sammy_H]

Yes ask on a new post.

This is why conventional medicine is not ideal, we are all different, there are several things happening between cells all of the time.

I love acupuncture, homeopathy, chiropractic, kinesiology - it’s about finding what is best for you.

Lyme is rife at the moment (not saying you have it) and gut issues, you may have Candida?

Gut health is always the starting point, diet is key.

Sue

[Sammy_H in reply to Chippysue]

Possibly candida, I smell of bread sometimes and I get a lot of yeasty discharge "down there". Will put up new post now.

[Nanaedake in reply to Sammy_H]

You can safely take 1000mcg of vitamin C daily and some magnesium as they are not stored in the body.

You're right that you need to be careful with some vitamins. So make sure you get blood tests for vitamin D3 and iron levels before and during any supplementing. You also need to be careful with vitamin A as some forms can be toxic in high doses.

[The_will_of_Jill in reply to Chippysue]

Levo is not for me. That’s for sure!

[Angel_of_the_North]

Your free T4 is in range so you are not overmedicated