Hi

I am new to this site and I am stopping my medication because my doctor keeps having a go at me every time my thyroid levels go high. I was diagnosed with hashimotos in 2014 and my dose was 150mcg levothyroxine and 10mcg t3 dropped from 175mcg levothyroxine and 20mcg t3 and then 200mcg levothyroxine and 20mcg t3. I continue to feel awful with tiredness, sore eyes, constipation, joint pain, joints locking, dry skin, cramps in legs, breathlessness, muscle weakness and the front of my neck is now swollen. What I would like to know is why does the doctor tell me off when I haven't taken my medication any differently to how he asks me to take it? I just want a chance to feel well again.

Thanks for reading.

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30 Replies

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  • Are you in UK?

    Is there another GP you could see in the practice?

    Please try not to get down about what the doctor's been saying. It's very upsetting and just adds to the stress when you are so unwell. It's just not fair on you. So sorry to hear what you've been put through. It's bad enough being ill without having that kind of behaviour to deal with also.

    I don't think you mean it when you say you are stopping your medication.

    Are you on any other medications or any supplements?

    Your doctor should try to find out why your medication isn't working for you, why you are still having these symptoms not blame or criticise you.

    Did you have an Ultrasound scan of your Thyroid? Would you consider asking your GP to send you for one?

    Have you ever had blood tests for Vitamin D, B12 also Ferritin and Folate? If not, please ask GP for them.

    Are you treating the constipation?

    X

  • Thanks for replying. Other doctors in the practice agree with the other doctor in that I am overdosing on my medication. I take no other medication apart from supplements. I had 2 ultrasounds on my thyroid. The first one said the thyroid is mildly enlarged and vascular and the second one said it was enlarged and hypoechoic. I am treating the constipation with laxatives. Yes I have had tests for vitamin d, b12, folate and ferritin.

  • What laxatives. Some can be harmful if taken long term.

  • Laxido

  • Years ago, my GP changed my Fybogel for Laxido.

    Laxido caused problems. I would never take them again. Might I suggest you try Fybogels sachets , adding a little fresh orange juice to stop them going thick before you can drink them. Increasing the amount of water you drink will help constipation and avoiding caffeine. You could also try Lactulose medicine initially.

    The GP at the time said Laxido acts quicker. It sure did. It moved stomach contents to quickly and past retained stool in the Caecum. So I was hungry and still constipated.

    I don't use any laxatives now. Got my bowels working again by doing pelvic floor exercises and drinking plenty water, decaf tea. Also healthy balanced diet with lots fresh fruit. Could you try gradually increasing fibre in your diet? If not then a Fybogel every evening will help. Better than laxatives in my opinion.

    X🐥

  • Thanks the more fibre I have in my diet the worse my stomach problems are. Probably not doing it gradually enough

  • It might be a good idea to use Lactulose till you get bowels moving regularly and well. If there is any constipation later on in the 'system' then it starts to dry out and gets more stubborn to move so eating lots of fibre to follow that would make the problems worse initially. It's a case of retraining the bowel and any change in diet would need to be done gradually. Drinking plenty of water shouldn't cause a problem though and is good for bowels.

    X🐥

  • The first thing I eat in the morning with my decaf tea and water is a banana. I aim to eat an apple and a pear just before or after lunch. I eat potatoes rather than bread.

  • Relaxation is also important for bowels and all of digestive tract to function well. So a stressful job or any stress makes things worse. Stress can cause the bowel to go into spasm. Another term for IBS used to be 'spastic colon'. Don't know if that term is used now though.

  • Levothyroxine somehow uses some potassium, so we'll need a little more than other people. A little too little potassium causes very often muscle cramps and muscle weakness (and thereby pain in muscles and joints) as well as bloating - and constipation, as it stalls the peristaltic. You can ask your GP for a blood test, or just drink one liter of coconut water and eat avocados, bananas, mushrooms, apricots etc with high potassium content for a couple of days and see if helps. You have to have magnedium too, though, as it directs the potassium to the muscles.

    Hope you'll soon feel better ❤

  • Are you taking any supplements eg Vitamin D, Folic Acid?

  • Yes vitamin D 3000iu and 5mg folic acid.

  • Do you take these at a different time from your Levothyroxine tablets?

  • I take the supplements at night and thyroid meds in the morning

  • Hi again.

    As far as I am aware supplements are best taken with food early in the day to be of good effect.

    So if you take your Levothyroxine in the morning would it be worth considering taking your supplements with lunch?

    X

  • Do you take magnesium as well? It's necessary to make the vit d work. (You need k2 as well, to help the vit d direct calcium to your bones - or it'll end up in your blood vessels!)

  • Doctors get frustrated by the inadequacy of their own system.

  • So sorry to hear you are being treated so badly by your gp. That is not fair and it's not your fault!

    Firstly, don't stop your meds you need them. It's about getting the dose right. And I've also heard you can fluctuate with hashi's although I've not experienced this - but it depends I think at what stage you're diagnosed

    What is being tested and what are your results and ranges for each?

    Have you seen an endocrinologist? If not you should demand you be referred as clearly your gp is not capable of understanding your disease.

    Next, how often are your blood levels being tested?

    Are they fluctuating every time?

    Are you having the blood drawn at consistent time of the day? Recommended to me was early morning, before eating or drinking anything but water (fasting state). Also, do not take your meds until after blood drawn as the t3 especially can cause spikes in levels.

    All the above should have been explained to you by an understanding doctor. It is their job to care for you and help you through this.

    Also - you are lucky to be on a t3 combo routine. If you're in the U.K. you are very lucky. Don't lose that prescription as you are likely to not get it back once you stop it as there are difficulties with getting this prescribed now.

    Good lick and hang in there!

  • Thanks for reply. I was first found to have high antibodies in 2013 but had a goitre a year before that. Yes my levels are fluctuating every time and I am having the blood drawn early each morning, before eating and drinking anything and I don't take my meds before the blood draw either. tsh, free t4 and free t3 is being tested each time. I am seeing an endocrinologist but awaiting an appointment to see them. I am having blood drawn every 6 weeks because of symptoms and test results.

  • Current results when on 200mcg levothyroxine and 20mcg t3

    TSH <0.02 (0.2 - 4.2)

    Free T4 36.6 (12 - 22)

    Free T3 8.3 (3.1 - 6.8)

    TPO antibody >1000 (<34)

    TG antibody 285.3 (<115)

    Feb 2017 when on 175mcg levothyroxine and 20mcg t3

    TSH 2.01 (0.2 - 4.2)

    Free T4 15.4 (12 - 22)

    Free T3 4.5 (3.1 - 6.8)

    Dec 2016 when on 150mcg levothyroxine and 20mcg t3

    TSH 3.67 (0.2 - 4.2)

    Free T4 17.1 (12 - 22)

    Free T3 5.0 (3.1 - 6.8)

    Oct 2016 when on 125mcg levothyroxine and 20mcg t3

    TSH 2.70 (0.2 - 4.2)

    Free T4 18.5 (12 - 22)

    Free T3 4.8 (3.1 - 6.8)

    Aug 2016 when on 100mcg levothyroxine and 20mcg t3

    TSH 3.3 (0.2 - 4.2)

    Free T4 13.1 (12 - 22)

    Free T3 4.3 (3.1 - 6.8)

    May 2016 when on 100mcg levothyroxine and 20mcg t3

    TSH 6.80 (0.2 - 4.2)

    Free T4 12.9 (12 - 22)

    Free T3 4.2 (3.1 - 6.8)

  • Quite apart from the fact that you have Hashi's, which is going to cause fluctuations like that, if stupid doctors dose by TSH, then they are never going to get stable results.

    How in god's name could you over-dose yourself, when you are given a limited prescription? You would run out of tablets pretty quickly. Why don't doctors have anything that resembles a form of logic? They are so busy looking for a reason to blame the patient, rather than themselves, that common sense goes completely out the window! I despair, I really do!

  • Looking through you TFTs it does seem like your Feb 17 results are closest to the best. It seems that your medication was increased because some improvement was desirable but the result was more than necessary.

    Are you taking 175mcg now or staying with the 200mg? Didn't GP suggest alternating the two doses and retesting?

    My GP refused to test T3 and T4 recently. Says lab will only test TSH for patients on Levothyroxine. Apart from the GP's appalling 'bedside manner' and offensive comments which are totally unacceptable - I would say the clinical care is quite good. Hopefully you will get to see Endocrinologist soon. Would you consider phoning Endo's secretary and asking how long you will wait as your symptoms are bad and you need to be seen asap?

  • Sorry,

    That should read 200mcg.

    I tried to click on it to amend but it didn't work!

    X🐥

  • I was taking 150mcg levothyroxine and 10mcg t3. Doctor did suggest alternating the two doses between 150mcg levothyroxine and 175mcg without retesting. I have just requested a referral and was told by gp secretary that the hospital would get in touch with me.

  • On the face of it your latest blood results suggest over medication but it may be sensible to await the next test and the endo appointment before changing the dose.Perhaps you should separately post the vitamin test results for comment.

  • What are you actual results for vitamin D, folate, B12 & ferritin - including ranges

    They need to be at top of ranges for us to be able to use Thyroid hormones in cells

    As you have Hashimotos are you on gluten free diet? If not would really recommend you try it. Approx 80-90% with Hashimotos find it helps significantly

    See The Thyroid Pharmacist website for masses of info on Hashimotos

    Also by same girl on you tube The Thyroid Secret

    Hashimoto's trashes our digestive system causing low nutrients, leaky gut and food intolerances- most usually gluten

    Most GP's have no idea about gut connection

  • I had vitamins and minerals tested. I will need to post the levels of these. I am only just starting to go gluten free.

  • Change your GP!

    Your current one is paid to help you with your health conditions, not bully you!

  • Because your doctor is also known as Doctor Richard Head (being polite here) and doesn't understand how Hashis affects the thyroid and is arrogant enough to feel that his shortcomings are your fault. You need another doctor with a clue. If you are in the UK, get the list of decent doctors and endos from louise.roberts@thyroiduk.org.uk

  • Thank you yes I am in UK.

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