Problems with doctor: Hi, I've had some problems... - Thyroid UK

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Problems with doctor

Skyla8 profile image
31 Replies

Hi, I've had some problems with my GP today. She has for some reason redone a test for antibodies, they are Thyroid Autoantibodies and are 141 kIU/L with the range below 34. The only range that is that low is Thyroid Peroxidase. The Thyroid Peroxidase when last done in July was 110 and the range was the same so I am prepared to assume that it has risen from 110 to 141. Why, I don't know as I have been taking my Levothyroxine at half the dose given my thyroid hormone results. So at the moment I take 112mcg instead of 125mcg.

The GP is now worried my TSH is possibly suppressed since my thyroid hormones are so high with Free T3 at 6.9 with the range at 3.1 to 6.7 and the Free T4 at 25.1 with the range at 12 to 22. The TSH was 0.36 with the range between 0.2 to 4.2, and she wants to start me on medication for hyperthyroidism, provided that the TSH is under 0.2 when tested.

So the GP has now ordered a retest for my TSH to check if it is indeed suppressed. She has also said she does not treat on how a patient feels despite the fact my heart rate has doubled and I get so hot outside when it's raining. That is not proof enough for her.

Maybe the best thing to do is change doctors within the practice? Or get a second opinion?

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Skyla8
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31 Replies
Heloise profile image
Heloise

Skyla, I'm no expert but this sounds bizarre. Your FT3 being over range appears you are hyperthyroid at the moment but probably because you are taking over 100 mcg. T4. Personally since you have a lot of T4 in storage and are over converting some to FT3 and going over range, I would stop all T4 immediately. Why would she want to prescribe carbimazole while taking Levo. or is she stopping Levo rather than reducing your T4 hormone?

I don't think you would be in any danger omitting your levo dose tomorrow. If you start feeling better I would stop for a few more days and then resume later at a lower dose. I would be interested in what others may suggest. Was she not concerned about your racing heart????

(I've known some patients who had to stop ALL levo for a month in order ot have cancer treatments).

silverfox7 profile image
silverfox7 in reply toHeloise

That makes sense to me Heloise

Skyla8 profile image
Skyla8 in reply toHeloise

Stop T4 immediately? I'm surprised, I thought I would need to tell the GP about that.

She wasn't very clear about whether she is stopping the Levo altogether or reducing it. She didn't say. She was not concerned about the racing heart, no.

Heloise profile image
Heloise in reply toSkyla8

Sky, this isn't really radical and certainly not dangerous. Remember each day you take your T4 or levo, you are adding to what has been building up for about two weeks so you are only reducing by 1/14th if you skip one day.....if my calculation is correct:) In any event, you are not really taking away that much levo immediately.

Secondly, T4 goes through a process before it is even used by the body so you won't notice a real effect immediately....it would be very minor. What worries me is that if you continue on a dose that is too high each day, it is going to build into a blood level that contains too much T4 for your body to sustain without hyper symptoms.

It's up to you but I think your heart rate is somewhat worrisome.

Skyla8 profile image
Skyla8 in reply toHeloise

Ok, thanks for telling me. So since I have been splitting my dose in half, does that mean I have been reducing by 1 14th if I skip one day? I am willing to stop the Levo immediately if that is the suggestion but for how long? And would I need to cancel the blood test?

Heloise profile image
Heloise in reply toSkyla8

I think Clutter asked about the tablet and how you are splitting them. Can you explain what you do exactly? Is it a 250 mcg. pill? There are all sorts of sizes that can be ordered.

If someone wanted to stop taking T4, it would take two weeks to notice a change I think and probably six weeks to have it out of your system. I don't know how long it would take to change your blood test result. It's done in parts per million or something. Sorry, I'm not a chemist.

Most people take their temperature and pulse and use that as to how they adjust their dose.

You can do that and I think you will recognize the improvement in your symptoms as well. Perhaps your reduced dose WILL finally show up but after 18 days I think you should be already and that's why I recommended skipping at least one dose.

helvella profile image
helvellaAdministrator in reply toHeloise

In the UK we only have three dosages: 25, 50 and 100 micrograms.

That is one reason alternate day dosing is sometimes suggested.

Rod

Skyla8 profile image
Skyla8 in reply toHeloise

Yes, I can explain. I have been taking 1 100mcg tablet and cutting 1 25mcg tablet in half with a knife. My maths is wrong again.

My temperature has always been low despite the overmedication symptoms. I can skip at least one dose, not a problem.

Heloise profile image
Heloise in reply toSkyla8

Well, to have a high FT3 but low thyroid symptoms is sometimes due to these two problems youtube.com/watch?v=qYeFh06...

youtube.com/watch?v=UMa_8oh...

Skyla8 profile image
Skyla8 in reply toHeloise

Thanks, I will look at these tomorrow as I'm off to bed but just to say I've acknowledged your reply with the video clips.

Skyla8 profile image
Skyla8 in reply toHeloise

Ok. I've looked at both video clips and I've got some good information from these.

High cortisol - I've not been tested for cortisol but if it can be done through a private lab if the GP is less than keen to do it, it's worth looking at.

T3 receptors - same as above.

High testosterone - my testosterone when last tested was actually pretty good. It was 0.8 unless I'm missing something.

Blood sugar - whenever it is tested it's straight down the middle but I'm not usually told before a blood test that I'm being tested for it and so haven't fasted. (if I'm meant to) I get sleepy after eating certain foods like pasta/bread which makes me think it's to do with gluten but it's different if I eat something like chocolate. But maybe the gluten isn't as significant in that as it is in bread/pasta. Maybe the inflammation this doctor mentions might be something to do with it and that I have a food sensitivity somewhere.

Heloise profile image
Heloise in reply toSkyla8

Cortisol is a big problem since most of us do not eat an ideal diet and have other stressors.

stopthethyroidmadness.com/a...

I guess the saliva test is the best way to test since it shows the daily ups and downs. Some doctors say that that should be treated before the thyroid. But you have to find out whether you need cortisol or adrenal extract.

If you can get natural desiccated thyroid extract like Armour, I would definitely try that before going to T3. If you are not having a problem converting FT4 to FT3, it would be easier for you to handle. Your body can determine the amount of FT3 and will have FT4 in reserve since it will be stored. If you only take T3 you will have to monitor it carefully.

Sky, I'm glad you are trying to educate yourself. You really need to. Mary Shomon has had a website for twenty years BECAUSE the treatment for (especially women) hypothyroidism is not sufficient.

stopthethyroidmadness.com/t...

Skyla8 profile image
Skyla8 in reply toHeloise

If I do the saliva test (I still have it) I have been advised to conduct it as I would on a normal day. As I'm a big tea drinker I was worried caffeine would affect the result but when I contacted Genova the advisor said if I drink tea on a normal day, I don't need to change my habit for one day. I think just one change like that won't be good.

If it's possible to get Armour online I'll buy it, but the GPs are adamant I'm on the right medication. If, for example, I decide to have my Free T3 tested (whilst still taking the Levothyroxine) and it drops, is that an indicator that I'm not converting?

I'll look at the links too. :)

Heloise profile image
Heloise in reply toSkyla8

I'll have to get back to you as I'm leaving the house without my ipad.

It could be an indication you are not converting if FT3 drops. High cortisol and low iron are other factors that hinder T4.

Skyla8 profile image
Skyla8 in reply toHeloise

That's fine. Seeing as I'm iron deficient that could be a factor. The saliva test I'm happy to do as long as it has a high accuracy rate.

Heloise profile image
Heloise in reply toSkyla8

High testosterone is a symptom. Do you know the range?

Some people find relief going gluten free. Some alternative doctors think we should go entirely grain free . I was surprised your doctor told you to eat more carbs. Who is this person?

There are actually 22 videos in this series. I've watched all of them and taken notes. Just go to youtube because they are all excellent.

youtube.com/watch?v=nZ_CP7l...

Skyla8 profile image
Skyla8 in reply toHeloise

Testosterone , the value was 0.8 and the range was 0.2-1.7. The doctor who told me to eat more carbs is a general practitioner. Yes, she suggested I eat potatoes, pasta, bread etc. Didn't suggest to go gluten free however. I'll look at these videos then if there are plenty more of them.

sulamaye profile image
sulamaye

Has she prescribed you the levo or are you self medicating? Or are you topping up with t3? Because why would a dr not just reduce your levo in response to those bloods? If she's prescribed it and isn't responding by reducing it then she seems to know dangerously less than most GPs. How weird. How can she be worried that your tsh is suppressed when it isn't, you just need less meds.

Skyla8 profile image
Skyla8 in reply tosulamaye

She prescribed me the Levo. I am not topping up with T3.

So she's looking for Graves antibodies?? I agree with Heloise - that's a bizarre move. There's absolutely no point in rechecking for Hashimoto's and it sounds as though you're simply a little overmedicated. You're probably experiencing a Hashi's flare (your thyroid is producing more thyroid hormone at the mo). So the right reaction would be to reduce your Levo dose a little further - at least for the time being.

Do you feel very overmedicated apart from the racing heart? Your results are only just over the top of the range.

Skyla8 profile image
Skyla8 in reply to

Yes, I feel very overmedicated, I have been sweating more and just feeling very wired and have lost weight. The GP just told me to "eat more carbs/starches/protein" which is hard when I can't swallow very well and have had choking fits.

One other thing. You say

I have been taking my Levothyroxine at half the dose given my thyroid hormone results. So at the moment I take 112mcg instead of 125mcg

Just a bit puzzled - 112mcg isn't half of 125mcg... Or have I misunderstood something? Just thinking that you might not have reduced your dose as much as you think...

Skyla8 profile image
Skyla8 in reply to

Sorry, no, I only take 112mcg because I can't split it any more than that.

Clutter profile image
Clutter

Skyla, Were your results above from 18 days ago when you were on 125mcg and I advised you to skip meds for a few days and cut to 112.5mcg?

I'd certainly see another GP as yours doesn't know what she's doing and "she does not treat on how a patient feels" would be enough to persuade me to see another doctor . Your TSH is still within range and nowhere near being suppressed ie <0.04. Your FT4 and FT3 are both a bit above range, indicating you are slightly overmedicated, not hyperthyroid. Racing heart and feeling over heated are signs of overmedication.

Skyla8 profile image
Skyla8 in reply toClutter

Yes, those results were from 18 days ago when I was on the 125mcg. I didn't realise I needed to skip them. I thought I needed to take them every day. So the best thing is to skip the meds for a few days as in not take them?

Skyla8 profile image
Skyla8 in reply toSkyla8

To clarify the thyroid hormone results were from 18 days ago, and I was on the 125mcg consistently at that point. I then lowered the dose as advised but I should have skipped them instead? I obviously didn't read that. Now I wish I had because I probably wouldn't have this problem.

Clutter profile image
Clutter in reply toSkyla8

Skyla, I advised skipping the dose for a few days to reduce your FT4 and FT3 levels because you felt anxious and appeared overmedicated. Your FT4 and FT3 are likely to have dropped on the reduced dose for 18 days so I wouldn't skip doses now. If your symptoms of overmedication haven't improved you could see if they improve on 100mcg or 100mcg/112.5mcg on alternate days.

Skyla8 profile image
Skyla8 in reply toClutter

Ok, thanks. I'll alternate the dose by taking 100mcg one day and then 112.5mcg the day after that. I'm going to take them in the evening before bed so that I can take the iron at lunchtime. I have Vitamin D and Vitamin B12 supplements now, but I don't want to do too much at once.

Clutter profile image
Clutter in reply toSkyla8

Skyla, if you vitD and B12 are low there's no point in delaying taking them although you are right to introduce them one at a time as in the unlikely event you have an adverse reaction you'll know which was the culprit.

Skyla8 profile image
Skyla8 in reply toClutter

I was told my Vit D and B12 are low and was advised to supplement with them. They're not out of range. I don't know what I should be doing. I know I need to re-introduce the Levothyroxine as that to me is more important and I want to start alternating that. The iron I cannot really delay taking although my GP says I am not anaemic and I want to take that at lunchtime tomorrow. People seem to have differing views on the saliva test and if I made a start on that say tomorrow and then take the supplements it might skew the saliva test results. I don't want to make too many changes and do too much too soon.

Yes, seek a second opinion. And don't be shy about telling the practice why. A racing heart should always be diagnosed, not encouraged.

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