20 years on and getting worse. How do I get my doctor to take me seriously?

[Tiredofthis77]

Hi all,

I've been struggling with thyroxine for the past 20 years. I used to be able to tolerate 150mcg, then I started piling on weight, getting bloated tummy, lost my appetite and a whole heap of other symptoms. I felt like I regularly needed to have a break from meds and after coming off them, I felt better after a few days until I began to get hypo again.

For a sweet spell I had the pleasure of taking liquid thyroxine - Evotrox - until it was discontinued. I had a great year on it and things have gone downhill ever since. The year before last I was told I didn't have a thyroid problem (just a poor metabolism) and they took me off meds for a year and a half. It was an awful year.

I went back to the doc in February and have been on medication (25mcg thyroxine in tablet form since then). I'm not good again. In fact, it seems to be making me gain weight - especially in my stomach area. I feel toxic, bloated, tired etc and I don't know what to do. My brain is becoming very sluggish and I can't get motivated to do anything - everything's a complete hassle because I'm so exhausted.

I have the doctor tomorrow. I had blood tests a few weeks ago and just got a message from the receptionist telling me to get more bloods done in September. I can't wait that long - I'm tired of just existing, not living.

This is all I've got to go on:

TSH 4.41 (0.55-4.78)

Ft4 14 (10-25)

Could it be possible I can't convert T4 to T3?

I'm getting so stressed thinking I'm going to be dismissed by doc again (I get the impression she thinks I'm just a moaning hypochondriac) and I really don't know what to do.

Thanks for listening,

Tired x

[shaws]

It is absolutely scandalous that the professionals do not know how to treat a patient who is hypothyroid.

50mcg of levo is a starting dose, with increases of 25mcg every six weeks until TSH is 1 or below and Free T4 and Free T3 in the upper part of the ranges.

We have to educate ourselves and many on this forum have recovered their health 'despite the awful guidelines' which keep many patients very unwell and no relief from clinical symptoms.

Your doctor seems to be another who believes that once the TSH is within the 'normal range' their job is done. Unfortunately it means we suffer when we need a TSH of 1 or lower.

Become a member of Thyroiduk and tell GP that you have been given advice that you need an increase and aim for a TSH of 1 or lower. Maybe give him a print-out of the following.

thyroiduk.org.uk/tuk/thyroi...

thyroiduk.org.uk/tuk/member...

Tick off your clinical symptoms and also show him - he probably is unaware of any. The aim is relief of symptoms, not to get your TSH into a range and then stop increasing dose.

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

You can also get a private home blood test and make sure (if you decide to do it) you are well-hydrated a couple of days before. They are home pin-prick tests and blood draw should be at the earliest, fasting (you can drink water). Make sure hands/arms are warm too.

thyroiduk.org.uk/tuk/about_...

/hypothyroidism_signs_symptoms.html

[Tiredofthis77 in reply to shaws]

Hi Shaws,

Thank you for taking the time to respond to me. I'll print out the info and take it with me today. I really appreciate your help.

Tired

[shaws in reply to Tiredofthis77]

He wont read it at the consultation, maybe not even after that. However, the more we read and ask questions the more we learn.

At least ask him if you can have your FT4 and FT3 tested as you are aware that both need to be in the upper part of the ranges, and the ideal TSH of around 1 or lower. Let's hope he is amenable.

The following is a statement by one of TUK's Advisers re a doctor who is also physician to the Queen when she's in Scotland. - Dr Antony Toft - and it may be helpful for you and hopefully GP - although most will have to stick by what they've been instructed to do.

From diogenes:

"Not quite but nearly. I think Toft is still uncomfortable with suppressed TSH on therapy as being acceptable. It is obvious that if the healthy TSH range is say 0.5-4, and the most frequent value found is around 1, then on therapy with a lower TSH range, some people who were at the bottom of the healthy range will be below it on therapy. And this could stretch to undetectable if at the same time a patient is a poor converter and needs much more T4 to achieve adequate T3. The basic problem that has to be overcome is to educate doctors that just "being in the range" is not the same as "having the values that are optimum for the individual". That is quite different. Our review makes that clear, and also throws doubt on the validity of all the trials that try to show links of thyroid function with outcomes like longevity, osteoporosis and AF as well as those comparing T4 only therapy and T4/T3 combination. I think Skinner was well ahead of his time, and I would hope, had he been alive, that he would have supported modern new thinking as a ripose to the old paradigm at present the bible for practice, diagnosis and treatment.

healthunlocked.com/thyroidu...

drmyhill.co.uk/wiki/Thyroid...

On the top righ-hand side of this HU page - you will see some related

[Tiredofthis77 in reply to shaws]

Thank you. Ironically Dr Toft thinks I'm fine and only have a slow metabolism. I saw him last year when I hit rock bottom.

[shaws in reply to Tiredofthis77]

That's a shame. Therefore, if we feel that doctors dont/wont help, then advice from those on this forum, who've gone through the same regime may possibly find a solution. which can be helpful to us as individuals.

[greygoose]

It could be that you don't convert. But, at the moment, you don't have much T4 to convert. You are under-medicated. Your FT4 is only 26.67% through the range, when it should be at least over 50%, if not more. And your TSH is much too high. You need an increase of 25 mcg and a retest in six weeks.

Your doctor sounds very ignorant. Is there someone else in the practice you can see?

[Tiredofthis77 in reply to greygoose]

Thanks Greygoose,

I tried going up to 50mcg on my own last week and it completely floored me, but maybe it was something else. That's why I was thinking it might be a conversion problem. Difficult to say when I didn't get FT3 tested. Your interpretation of my results is very interesting, thank you.

Might have to change surgeries as all the docs are of the same opinion

Tired

[greygoose in reply to Tiredofthis77]

Floored you in what way?

[Tiredofthis77 in reply to greygoose]

Super tired, sore stomach, crazy brain fog, heavy eyes, raised heartbeat, super emotional, bloated so much that I couldn't fasten my trousers. When I stopped taking 50mcg after a week, I started feeling better on day four. I actually had an appetite that day, which is unheard of. I felt toxic as though it was building up in my system for the week I was taking 50mcg, and I slowly felt better when I stopped. Eventually I felt the need to take 25mcg again. It's a vicious circle I've been going round and round for years.

[greygoose in reply to Tiredofthis77]

Did you change brands when you had the increase?

[Tiredofthis77 in reply to greygoose]

Nope, exact same brand

[Tiredofthis77 in reply to greygoose]

Another problem is weight gain. It's so bizarre but I piled the pounds on last week despite having approx 700 calories a day

[greygoose in reply to Tiredofthis77]

You piled the pounds on BECAUSE you were only eating 700 calories a day. You put your body into starvation mode, so it hangs onto every calorie it can.

Plus, you probably reduced your conversion of T4 to T3 and increased conversion of T4 to rT3. It's well-known that low-calorie diets are not recommended for hypo. In fact, increasing your calorie in-take is more likely to make you lose weight than reducing it to that extent.

[Tiredofthis77 in reply to greygoose]

But that's pretty normal for me. I never have an appetite. I just was more off my food than normal when I doubled up

[greygoose in reply to Tiredofthis77]

If that is normal for you, then you probably have very low nutrients. And that's why you can't raise your dose. Have you had your vit D, vit B12, folate and ferritin tested?

[Tiredofthis77 in reply to greygoose]

I'm on Vit D and get B12 injections every 3 months. The last time ferritin was tested it was fine

[greygoose in reply to Tiredofthis77]

Who said it was fine? Your doctor?

Do you take the co-factors for vit D? Vit K2-MK7 and magnesium? And, do you take a B complex to back up your B12 injections and keep the Bs balanced?

[Tiredofthis77 in reply to greygoose]

Doc said it was fine. I pretty much got everything tested a few months back. I've been on vit D for about 3 years and B12 injections for 10 years. Nothing was said about taking anything else

[greygoose in reply to Tiredofthis77]

Your doctor wouldn't know an optimal ferritin if it got up and bit his nose! Never, ever take nutritional advice from a doctor, they can really screw you up because they don't learn about nutrients in med school. Which is why they never said anything about the co-factors.

If you've been taking vit D for three years without any vit K2, I would get my calcium tested, if I were you. It could be high. Taking vit D increases absorption of calcium from food, and K2 makes sure it gets into the bones and the teeth, and doesn't build up in the arteries and soft tissues. Which can cause a lot of problems.

And, the vit D will have been depleting your magnesium, too. Given that most people are deficient in magnesium due to soils being depleted, and you are hypos so probably not able to absorb nutrients anyway, plus you don't eat enough, you are more than likely very deficient in magnesium, which will make you feel horrendous! But no point in testing because the tests don't tell you much due to the way the body handles magnesium.

And, without those other B vits, the B12 shots probably haven't been doing you much good, either.

So, what was your ferritin level?

[Tiredofthis77 in reply to greygoose]

Thanks for all the info. I wasn't told and I didn't ask. Receptionist said everything was fine but I demanded the thyroid results

[greygoose in reply to Tiredofthis77]

Well, it is always best to get a print-out of all the tests. For one thing, you need to know exactly what has been tested.

[Tiredofthis77 in reply to greygoose]

Thank you - I'll bear that in mind

[greygoose in reply to Tiredofthis77]

You're welcome.

[Tiredofthis77 in reply to greygoose]

Dose has been doubled so I’ll see how this goes. I just fear it will have the usual negative impact but I’ll soldier on. Thanks to everyone for being so kind and sharing advice. I really appreciate it

[greygoose in reply to Tiredofthis77]

So, you're now taking 50 mcg? If that appears to be too much, you could try alternating 25/50 for a while, which will make the increase more gradual.

[Tiredofthis77 in reply to greygoose]

Yeah, will start tomorrow! Thank you again - I’ll take it in stages if it goes pear shaped again.

[Hidden in reply to Tiredofthis77]

Have you been on many low calorie diets in your life (as many hypos have)? That is not necessarily the answer. People who frequently go on VLCD (very low calorie diets) can actually end up with lower metabolism than they had to begin with, which is especially problematic if you have hypothyroidism on top of it.

700 calories a day will most likely put you in starvation mode, lowering your impaired metabolism even further, causing a vicious circle where you can gain more weight the less you eat.

[Hidden in reply to Tiredofthis77]

PS. What's your original diagnosis (the reason you were put on T4 meds in the first place)?

[Tiredofthis77 in reply to Hidden]

My TSH was 12 when I was first diagnosed. I went to the doc with the usual hypo symptoms

[Hidden in reply to Tiredofthis77]

Did your doctor ever try to find the reason (such as Hashimoto's disease aka autoimmune thyroiditis)? I'm asking because if you have Hashimoto's, you most likely need to be on thyroid hormone replacement for the rest of your life.

[Tiredofthis77 in reply to Hidden]

I was told I needed to be on it for the rest of my life 20 years ago, but they backtracked a two years ago and told me I was fine. However, started again earlier this year but constantly being told results are fine.

[Hidden in reply to Tiredofthis77]

Personally, I think it sounds strange that they changed their minds two years ago, after you had been on levo for 18 years...have you ever been tested for autoimmune disease (anti-TPO and anti-thyroglobuline)? They are used to diagnose Hashimoto's disease.

Did they tell you why they suddenly decided you would be fine without thyroid meds?

[Tiredofthis77 in reply to Hidden]

I seemed to get toxic with it so it was easier for them to stop it rather than find a solution. I have tested positive before but it’s been a very long time since I had a test

[Lalatoot in reply to Tiredofthis77]

Have you tried splitting your dose of thyroxine. I couldnt tolerate mine in one go as the does increased so I take half in morning and half at 5pm. You could take the other half at bedtime. Whatever suits.

[Tiredofthis77 in reply to Lalatoot]

My doc has just doubled my dose to 50mcg so thanks for the tip - i’ll try that

[SilverAvocado]

Tiredofthis77, These results look very undermedicated. A healthy person would have a TSH between about 0.8 and 2, by the time it gets as high as about 2.5 we know something is wrong with the thyroid. Once on thyroid hormone replacement most people will feel well with it well under 1, probably at the bottom of the range or below. Yours is 4.41, so it's pretty high on both these counts. It should be much much lower when taking hormone.

As GG has mentioned your freeT4 is low in range. Thyroxine contains only T4, so this test gives us a good idea of if it's getting your levels in good shape. Most people taking T4 will feel well with this right at the top of the range, so yours is far too low.

At one time you felt well on 150mcg, then you started to get symptoms of undermedication and that led to having your hormone completely cut, and now are talking a starter dose of 25mcg? You have really been through the mill and that sounds awful

It sounds like you've been struggling with some of the weird little details of dosing T4. Its quite common to feel better for as long as a week or two after stopping all hormone, its just one of those strange things. It doesn't mean we've been overmedicated, and in my own experience its more likely to mean undermedication. It's also one of those things to do well on T4 for years and then fairly suddenly find it doesn't work as well, and needing an increase, decrease, or to introduce T3.

It's also fairly common to find it hard to introduce or raise a dose of thyroid hormone when we've been ill or messed around with for years. You are very clearly undermedicated, but an increase makes you feel overmedicated. I wrote a post with advice for dealing with this earlier today, I'll go and cut and paste it..

[SilverAvocado in reply to SilverAvocado]

You can take steps to resolve this issue, and there are a few different strands that all need work at the same time. As you make progress in each area it will make the next area easier.

1. Address vitamin deficiencies and get your results optimal. Start with ferritin, folate, vit D and vit B12. You may be able to get your doctor to test these. If not get finger prick mailorder tests, see the ThyroidUK website for how.

2. Address and treat your adrenals. There is a lot that can be done. Start with lifestyle factors, reduce stress, rest more, learn to meditate, sleep well, eat healthily and don't skip meals or restrict calories, etc.

Think about ordering a 24hr adrenal saliva test. After you know how you do on the test you can think about introducing adaptogen herbs or adrenal extracts.

Unfortunately your doctor probably won't help, unless you turn out to have Cushings or Addison's disease.

3. You can start increasing your T4 but do it super slow. Grind the tablet or cut into tiny pieces with a razor blade. Try taking a half or a quarter of the suggested increase and take that with your usual dose for a few weeks. If symptoms don't return increase the daily dose by another small piece. If you still get symptoms, cut an even smaller piece (you can go down as far as the tiniest crumb of tablet you can reliably make if necessary). Or if you symptoms return later in the process drop back to the previous dose and stay with that a few more weeks. As you start to get that thyroid hormone into your body and increase your levels it should make all the other parts a bit easier.

[Tiredofthis77 in reply to SilverAvocado]

Thanks for this. Success with GP to a certain point as the dose has been doubled to 50mcg. She will call me in a few weeks to see how I am

[SilverAvocado in reply to Tiredofthis77]

That sounds good I think at this point you probably need to start from square one, and build up slowly.

Best practice is to hold on a given dose for 6 weeks and then have a blood test and adjust by 25mcg. Carry on like that until you're freeT4 is high in range or symptoms feel better.

[Tiredofthis77 in reply to SilverAvocado]

Fingers crossed I can tolerate it! Thanks for your help