Thyroid UK
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Feeling awful

I am new and currently taking 25mcg thyroxine for hypothyroid diagnosed in 2011. Symptoms are making me feel awful such as hard stool difficult swallowing periods coming late joint pain hair loss anxiety pins and needles feeling cold sweating low heart rate pale skin puffy eyes weight gain joint stiffness am I likely under medicated? I reduced the dose myself. Thank you

TSH 0.02 (0.2 - 4.2 mIU/L)

Free T4 50.4 (12 - 22 pmol/L)

Free T3 14.7 (3.1 - 6.8 pmol/L)

39 Replies
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Have you got your latest thyroid blood test results. If so, if you post them here then people will be able to explain a little more.

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Done

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I really need some help with my dose please. I knocked my dose down to 25mcg to please my GP because he said I was over treated.

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Hi from the symptoms you described yes more than likely but we need to see your recent bloodtest results to be sure.so if you have them could you post results with ranges that's the figures in brackets after result then me.bers can advise. The dose you are on is a starting dose that's usually given to old people or someone who has heart problems. Have you been on that dose since being diagnosed?.

Just seen your reply so disregard the bit about putting results on

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Did you knock your dose down before or after these results? Have you been tested for Hasimotos thyroid condition? The results you have posted suggest you are taking too much Levothyroxine and liothyronine but I don't take T3 so I can't comment on that aspect at all. If these were my results, I would be checking for antibodies and in the meantime I would reduce my medication and test again in 8 weeks.

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Thanks I knocked the dose down after results, I just didn't know what to do and I am at a loss. I have elevated antibodies so Hashimotos.

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What dose were you on before you knocked it down?

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200mcg levothyroxine and 20mcg T3.

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I think we really need some more info before we can advise you, what dose were you on when you had this results done, and for how long? How long have you been on new dose of 25mcg and do you have hasimotos?.

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I was on 200mcg levothyroxine and 20mcg T3 on the results above, and I was on that dose since Feb. I have only just been taking the 25mcg for 2 days and I have Hashimotos.

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TPO antibodies 376 (<34)

TG antibodies 255.3 (<115)

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Hi lauren6 sorry for all the questions but to help we need as much info as possible. Is this your first bloodtest result since you started the dose you were taking in Feb, trying to establish if you are having a hashi flare, as I've not got hashi and not taking t3 I think we need some members who are to give advice about what to do if it is a hashi flare so hopefully someone more knowledgeable will join in and help you.

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Yes first blood test since I started the dose in Feb.

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I was fed up of having low results on the 175mcg levothyroxine and 20mcg T3 so I upped it myself to 200mcg levothyroxine and 20mcg T3. I was desperate to feel well enough to work and now I am thinking what did I do wrong?

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No, don't worry. I doubt that an increase of 25 mcg would have had that much of an effect!

Looks to me like a Hashi's flare/hyper swing. We've had so many of these lately, it's incredible that doctors don't understand them. But, after a Hashi's attack, the dying cells dump all their hormone into the blood. So, temporarily, the levels go really high. But, they will go down again. And, when they do, you're going to need to be back on your normal dose again! Doctors are so dumb!

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Thanks I have only taken the 25mcg for a couple of days so do I go back to the full dose in another few days?

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It's impossible to know how long the levels are going to be high. You just have to go by how you feel, I'm afraid.

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Ok I feel pretty rubbish now to be honest.

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How long ago were these blood done?

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Beginning of June

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Oh, well. If you're feeling bad, try going back on to a dose just under your normal dose, and then increase back to normal in a couple of weeks. Just see how it goes. :)

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Have you thought about going gluten free to help reduce you antibodies? It helped reduce mine. have you ever had Vit B12, Vit D, ferritin, folate and iron tested?some of your symptoms suggest low B12. If the levels are not optimal due to poor absorption because of sensitivity to wheat/gluten then your body cannot utilise T4 or convert to T3 properly.

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Thanks for reply. I have had vitamins and minerals tested. I had a B12 injection but haven't felt any benefit on this at all. I fell out with my GP over going gluten free, she queried why I was so thin and underweight and I told her because of the goitre I had I couldn't swallow a lot of food and I was cutting out gluten. She asked why I was cutting out gluten and I said because I have Hashimotos and she said there was no need for me to go gluten free because I was not gluten sensitive. She told me I needed psychological help and gave me a leaflet on Positive Steps. I left that appointment in tears and feeling like a hypochondriac.

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You aren't a hypochondriac, and you aren't the only person in your situation who has left a doctor's appointment in tears - you're in the company of many thousands of women getting similar useless treatment from the NHS. Sadly, for many of us the only choice we have is to help ourselves as much as possible.

You have autoimmune hypothyroidism (also known as Hashimoto's Thyroiditis), shown by the positive antibodies you've got. The antibodies fluctuate in numbers and fluctuate in activity levels. When they get busy these thyroid antibodies attack the cells of the thyroid and kill them off.

When thyroid cells die, any thyroid hormones those cells contain will be released into the body and bloodstream. The rise in thyroid hormone levels increases your Free T3 and Free T4 and this then lowers your TSH.

When this happens the best thing to do is to stop taking thyroid hormones altogether. The problem is that you only find out when the antibody attack is over when you start feeling hypothyroid again. An autoimmune flare up (known as a Hashi's flare) might last a few hours, a few days, or even a few weeks.

Over time (it could be many years or even decades) your thyroid gets smaller and smaller as more of it is killed off. Eventually you will be permanently hypothyroid. But until that happens you will have episodes of hypothyroidism, and when an antibody attack comes along you'll get symptoms from having too much thyroid hormone.

I don't have coeliac disease, so your doctor would say I could eat gluten if I wanted to.

I gave up gluten as an experiment and got lots of benefits from it. My balance has improved, so has my mood and my temper. And my absorption of nutrients has improved too.

People can be intolerant to gluten in various ways. Just testing for coeliac disease doesn't tell the whole story, so your doctor is wrong. I'm far from being alone on this forum in getting benefits from giving up gluten despite not being positive for coeliac disease.

In addition to the help you get from this forum, you would benefit from reading stuff by Izabella Wentz - she is a Hashi's sufferer herself. She has written a couple of books on the subject, has a website, and Facebook page. Do a Google search for her.

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How nasty when you're feeling so low, my dr is the same, very insensitive and no idea how to treat you, you don't need psychological help I had to force feed myself, no hunger at all but just knew I had to eat or would end up being ill, this was before I knew I was hypo,( waiting for test to see if I've got hashimotos) I think some of these drs need an update on their training in some matters 😕

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Your doc is an idiot.. DId she test you for gluten sensitivity? it's not an accurate test. I have never been tested but felt a lot better for being GF and also reduced my antibodies.If you have absorption problems then it is quite possible that is why you are thin. ALso what has she said about your goiter and difficulty swallowing? I would be reporting her for neglect. find a doc who will listen and act. email Louise at thyroid uk for a list of docs who might know what they are talking about. What are the results of you vitamin and mineral tests?

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No test for gluten sensitivity. I had an ultrasound done 2 years before the appointment which said I have an enlarged thyroid but she still gave me the leaflet on Positive Steps.

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I think your doc needs psychological help as clearly she enjoys keeping you unwell! SEnding her back to med school would be a complete waste of time and money.

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Then you need a new GP - one who is not dogmatic in her ill informed opinions

Gluten intolerance is extremely common in Hashimoto's- just that many Uk medics seem to have no idea

Have you been tested for coeliac?

There is higher % with Hashimoto's that have coeliac (approx 10%) but far more are gluten intolerant (80-90% according to Isabella Wentz the Thyroid Pharmacist)

Hashimoto's causes leaky gut or leaky gut causes Hashimoto's.

Extremely common to have low vitamin levels with Hashimoto's. You need to have vitamin D, folate, B12 and ferritin checked & get results including ranges. They need to be at very good levels to help thyroid hormones be used in cells

Gluten free diet may help heal gut, as may daily probiotic, fermented foods like kefir and old fashioned bone broth used in soups & stews can help too

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Thanks they are on another post. I have not been tested for coeliac, how do I do this?

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Only reliable test for coeliac is endoscopy, but even that can be ambivalent.

If going to have endoscopy then have to eat high gluten 6 weeks before. Known as gluten challenge

Blood test for coeliac is notoriously unreliable.

Why not just try gluten free for 6 months. It has to be strictly adhered to, as if you were coeliac

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And if you do get the blood test for Coeliac you need to be still eating gluten for it to have a chance to show positive. I had a test done years ago - before it became so well known about. I told GP I had been off Gluten for over 6 weeks, still did test, and it was some time later I found out I should have still been using gluten prior to testing, to it is a waste of time.

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I'm very sorry your doctor is treating you this way. So many of us get shoved psychological treatments when what we need is our thyroid conditions properly treated and investigated and then some support to get back on track. Take the Positive Steps flyer back to her at your next apt and tell her you don't want to waste paper and keep it for someone who needs it. I would listen to the good advice of the other people with Hashimoto's on here as they will have good experience. I would also check out vitamin deficiencies as we can all be low with any kind of thyroid condition. The NHS B12 test only tests total B12 so you may need to get the Active B12 test done privately. One B12 injection might not make much difference. You would need to have loading doses if you are deficient. I would check this out on the Pernicious Anaemia UK website or contact them to find out more. I read that it's important when going gluten free to cook and prepare your own food rather than buying gluten free in the shops. That way you can be sure you get enough nutrition.

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Thanks vitamin and mineral levels are on another thread.

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Hi im sorry I do sympathise

Only to tag in that agree taking gluten away has helped me so much, no cravings, tastes better, nothing to loose, lost so,e weight which I'm struggling with

But also I've used keniesiology to be tested and it diagnosed wheat sensitivity luckily not intolerant but a good keniesiologist can diagnose if intolerant, So also take out the nightshade family this is potatoes coldtomatoes aubergine, Peppers, and mainly the gut can often be porous so you can't absorb as well nutrients also, gut can heal , I was prescribed Sustsin powder, it's from Nutri, Know it's working, I at first needed two scoops twice a day and now just one scoop daily, he tested it, good stuff.

All best wishes xx

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It is really important to look at your diet. Consider how much gluten is in your diet. I gained a huge amount of energy by cutting it out, as a hashimotos thyroid suffer.

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Hi

Your symptoms are very similar to mine and I've only just been diagnosed, I'm currently on 75 mg and still feel pretty much the same, I can't comment on your dosage as pretty new and don't really understand it yet, why did you drop your dosage so low..

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Lauren6 my sympathy and blessing to you .My question is why did you feel you had to lower your dose ? After reading that you where on 200mcg thyroxine and you lowered it to 25mcg thyroxine in how much time did you do it ? It's a tremendous reduction and I don't know was it in one shot ? However you are very smart for recognizing your symptoms and journaling it . Your symptoms say you are hypo . Reducing doses or raising need to be small and slow doses . And respecting your body to acclimate to new changes is very important . It takes about six weeks for that to happen . Try to see if you can add some nutrients mean time too . Selenium , B-12 with folate Vit"D" Iron if needed magnesium omega 3 . Iron and calcium are stopped 5-7 prior to running labs .

Best wishes for best outcome .

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Loren6, I have been on thyroid med. for about 15 years, and I would highly advise you NOT to adjust your med. , it could get you very sick. Your thyroid has an effect on almost EVERY part of your bodies function. You need another thyroid test to see where you are at now. Your Dr. can then make a decision whether or not you need an adjustment of your medicine based on you tsh levels. Take care, Littlebowpeep

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