New to hypothyroidism

Hello everyone, I was diagnosed about a year ago and put on 50mg of levothyroixne.

Everything went really well up to about a few months ago, I felt euphoric and hadn't felt that good for 10 years.

Iv been back for blood tests and get the results in a few days.

I guess the reason I'm here is because the docs seem really unhelpful and quite reluctant to give me a answers or explain anything in detail.

I have a lot of severe symptoms and wanted to know if any of you think it could be caused by my thyroxine level.

I was having seizures or blackouts after I come around I'm soaked with sweat and vomit, during the seizure I'm in pain everything's black and I feel like I'm dieing it's the single most terrifying thing to ever happen to me. Since being on the meds it's stopped completely.

My depression has come back, I'm delusional, argumentative, irritable, i have emotional break downs, I experience intense rage and sadness, I'm forgetful in the last month iv actually left £100 in the cash machine twice, tired all the time but can't sleep well, poor appetite, generally feeling weak and lousy.

I could list so many more but that's the worst of it.

After looking online I started to read about myxoedema I'm convinced I was suffering from this it's just my thyroxine level doesn't really seem that low.

I felt really ill and started having seizures at about 16 my hypothyroidism wasn't diagnosed until I was 26, I did have an operation to remove an adonema on my parathyroid glad when I was 22, my endocrinologist did say my thyroxine level was low but hopefully it would go back to normal after my operation.

Unfortunately i didn't follow that up.

I would be really gratefull for any feedback.

Sorry if it's nt very well written or structured my brain just work howit used to

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10 Replies

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  • 50 Levothyroxine is a very low dose and I feel sure this is the problem. Cannot be sure until you post your new thyroid blood results with all the reference ranges. I expect they will show you are being kept just in the reference ranges, instead of a TSH being around 1 or less. Ask your GP also to test vital vitamins and minerals which are often low in hypo people: Vit D, Iron, Ferritin, B12 and Folate. When you have results, post again for advice. Do not start any supplements until you have had the blood tests as it will skew results. Please do not worry. I am sure when your dose is increased you will start to improve. Your GP is basically keeping you ill but you will need to fight your corner to get an increase as GPs know very little about thyroid and just go by what the lab tells them. It is mostly due to the ineptitude of GPs and other consultants with regard to thyroid that this forum exists.

  • Hi and welcome to the forum. I am so glad you are here and felt able to open up to us and I appreciate that can't have been easy but I can understand why you now feel you must. You are finding that doctors are not helpful or supportive and a lot of us have found that to different degrees. You have taken the biggest step though and started to get to the bottom of it and yes many here will be able to offer help and support. The first positive thing though is that you are awaiting test results. Please ask for a copy, they are your results so you are entitled to that. There shouldn't charge you other than may be a few pence to cover the cost of paper and ink. Then post again all the results you have and the ranges. The ranges are important as these differ from lab to lab. That will make it easier to comment where to go next. It would also be helpful if you have any other changes, weight changes, hair loss, anything about you that has changed. From you thyroid bloods we should be able to have a good idea of what is happening but often having a thyroid problem means vitamins and minerals can be low as well. Have you had any other tests or on any other type of medication? This will also be helpful. Try not to get stressed as you have taken your first important step to getting this sorted out and we are a friendly group and I'm sure you will get loads of advice etc. once you post your results.

  • I am sorry you are feeling so unwell but believe Hennerton is correct in that you are undermedicated. 50mcg is a starting dose and it would appear your doctor is another one who knows little about the function of the thyroid gland and the hormones we need to function normally.

    It is amazing how many doctors don't know how to treat patients. Have nil knowledge of the clinical symptoms. So we have to read and learn for ourselves in order to recover some semblance of good health.

    Make an appointment and have the earliest one available. Ask for a full thyroid function test, TSH, T4, T3, Free T4 and Free T3 and also the ones suggested by Hennerton. (Tell your doctor you want to recover your health and want to start from scratch. (Although he may be reluctant to do all of these, ask anyway). They have been told to diagnose on the TSH alone but that's nonsense.

    On the morning of your blood test do NOT take levothyroxine until after the blood test. It can skew the results.

    Ask for a print-out of your results which you should keep for your own records and so that you can post on a new question for comments.

    50mcg is a starting dose, as I've said, and should have been increased about 6 weeks later by 25mcg increments and so on until you felt well, not by the doctor looking at a computer print out and because your TSH is within range not medicating you further. We should have a TSH of at least 1 or below or suppressed to feel reasonably well.

    Regards

  • I'm so sorry ! This is just horrible and frightening. Either Myxedema Maddness or HE, it seems. Get the tests like they are saying, but from what i have read, if it's Myxedema related, t3 only meds work best for that. Are you swollen? Are you able to pinch your skin or is your skin thickened and tight? Have you gained a lot of weight? What is your bp and heart rate like? Also, Hashimotos can cause issues with the brain and seizures. Hashimotos Encephaly, i think. HE for short. Please google it.

  • Wow thankyou you everyone for your responses I already feel like I know I what to do and say when I go to the docs.

    The only other meds I'm on are 30mg mirtazapine for depression and sleep.

    Im incredibly skinny and always have been I was putting on weight when I was feeling well but not anymore.

    It is actually my fault for not going to my follow up blood tests I find getting to the docs pretty difficult.

    My skin is thin and easy to pinch, my heart rate has been faster than normal and I'm getting palpitations, tho my heart rate hasn been so much of an issue the last few months. I have very pale dry skin and coarse hair, my joints have been giving me problems recently lots of clicking and aching.

    I will post my test results as soon as I get them.

    You all seem to know so much it's so relieving, I feel I'm in the right place :)

  • You say it's your fault.

    I'd argue that when someone has a serious condition they should have been chased up and not simply ignored as they didn't come in.

    There have been many dramas (e.g. TV such as Casualty or Holby) where a test result has come in but the patient has disappeared. They move heaven and earth to find the person - who will be driving and about to collapse, or about to go abroad, or maybe getting into bed though they need immediate attention. The story line wouldn't work if the medics simply ignored the issue. So at least the writers of drama see it as something the medics can and probably should do!

    Don't take the burden on your shoulders. A tiny bit of it might have been your fault - the rest is not.

  • Helvella has given great advice.

    Depression is also a clinical symptom of hypothyroidism and that's probably because your T3 is too low. T4 (levothyroxine) should convert to sufficient T3 but not if you're not on a decent dose of thyroid hormones. Our brain contains the most T3 receptor cells and our body contains billions of T3 cells and you have to have sufficient medication.

  • If the pituitary is involved, you and they simply cannot rely on the TSH test at all. Your history of pituitary adenoma removal should immediately raise questions about how much of each and every hormone your pituitary is producing. It is possible that your pituitary simply cannot produce enough TSH so, instead of rising and indicating that your thyroid hormone levels are too low, the TSH remains in range. So your doctor(s) assume all is well.

    I suspect that your thyroid hormone levels are too low - 50 micrograms is not often sufficient. But with the possibility of other issues, don't concentrate too much on that. (If you do, you might get some more levothyroxine but with everything else being ignored.)

    Have a quick read of what the pituitary does - the Wiki article is an OK introduction:

    en.wikipedia.org/wiki/Pitui...

    Maybe have a look here:

    pituitary.org.uk/

    You need to make sure that you get both Free T4 and Free T3 tested. Your GP might have to write a reason on the blood test form, or ring up the lab, to make sure they get done. Often the labs simply won't do those tests even when requested.

    Rod

  • I am no expert but like others I feel your 50mg of Levothyroxine is too low.

    From my experience, I would advise you to go and see another GP and if that one will not help then go and see yet another! I saw a consultant and in total 3 different GPs until the last GP is now the most helpful -even that one is mad daft about blood levels.

    Plus keep track of your blood and as others say get a vitamin blood test.

    Sorry but out there it's DIY medical care with Thyroid. Hope you keep better and let us all know how you are keeping.

  • Hi Jake, please get a print of the test results along with the ranges for each and hopefully you have at least the TSH, free (FT4 and FT3) tested. The TSH is supposed to get your own thyroid to produce (mostly T4) ot a constant level but along the way during the action of intestines and liver it is supposed to convert to free T3 which is what relieves symptoms.

    Usually T4 or levothyroxine is what is prescribed which is synthetic and not really exactly what your own thyroid would, so it is less superior. In the UK under the NHS, they are reluctant to prescribed what has been used for at least 100 years which is natural hormone. This is closer to human extract and comes from pigs.

    We have to come to terms that the system being used is not putting the patient first and that puts you in a perilous position as you have found out but when you do that you will become your own best advocate (or take someone with you to your appointments to help you). We can take that even further if you cannot get enough satisfaction. There is absolutely NO reason to be so ill with this condition if it is Hashimoto. Very best wishes.

    If you have time for more reading:

    stopthethyroidmadness.com/m...

    stopthethyroidmadness.com/l...

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