I was diagnosed with hypothyroidism in June when my second child was 5 months old. It had gotten to the stage where I wasn't even able to get out of bed. I had also put on a stone and half in one month alone even though I was barely fit to eat. On having my bloods taken it was discovered my tsh was 113.
I have been put on eltroxin and am now on 125 Mg daily, however my readings are still very erratic and not settling at all. They may seem fine, I'll be feeling fine, and suddenly I'll crash and they will too. There seems to be no let up. I recently started paying privately for an endocrinologist who says my readings are now tsh 8.7 and my t4 22.6. She has also placed me on metformin to help with the weight loss as it isn't budging
In the last week I've crashed again, but unlike any other time my temper is increasingly short, I'm irritable and I feel like crying constantly. I'm so short tempered that even when something isn't loading on my phone I start to feel really annoyed which is completely unlike me
My son is 4 and I find myself shouting at him over silly things and then crying because I know I shouldn't have.
I'm feeling more helpless now than I did with the initial diagnosis. I want to be a good mum to my kids, and I'm starting to hate myself that I don't seem to be able to.
My question is, has anyone else experienced this short temper and general feeling of helplessness before? As I haven't had it previously.
Thanks in advance. ☺
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ChockyBicky
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You do not need Metformin for weight loss! You need a decent dose of thyroid hormone replacement. Your TSH is much too high but your FT4, even without a range - please, always put the ranges - looks ok. So, that probably means that you are a poor converter and your FT3 is low. You are not going to lose weight with a low FT3, with or without Metformin. Quite frankly, I don't think your private doctor is worth the money you're paying for her!
You need proper testing :
TSH
FT4
FT3
TPO antibodies
Tg antibodies
vit D
vit B12
folate
ferritin
If you get all that done - and I would have that that was the minimum a private doctor would do! - and you'll have a better idea of where you are. It sounds as if your doctor is dosing by the TSH, which is the best possible way to keep the patient sick! I would fire this doctor and find someone who knows at least the basics of thyroid treatment.
I decided to go private as my gp was quite happy for me to run on 75mg of eltroxin even though I kept arguing I was feeling absolutely horrendous. At the time my t4 was 22.6 and tsh 7.4, they're the only ones I've ever even been told about.
I was then upped by the endocrinologist gradually to 125 Mg but told a week ago to wait another 6 weeks before being tested again. In total, that will leave me at 16 weeks untested which I myself feel is too long. It always feels like fighting a losing battle
Metformin can interfere with vitamin B12 absorption. Vitamin deficiencies are very common in people with thyroid disease and need correcting. Your TSH is still too high, it needs to be 1.0 or a little lower to start feeling well. It can take several months once you have the biochemistry right to start feeling well.
YOu should ask for vitamin B12, folate, ferritin and vitamin D to be tested then post on this forum for advice about results.
Do you have thyroid antibodies? Do you have autoimmune thyroid disease? If so, this can affect your blood test results and cause results to fluctuate. It can also cause you to swing between feeling overmedicated and hypothyroid.
Post your blood test results here and people will help you to understand what is going on.
Thyroid imbalance can cause many symptoms and can effect your emotional responses but the aim of taking levothyroxine is to become symptom free.
You will get better advice here than from the private doctor and it will cost a lot less!! I agree with Greygoose that your private doc is doing you no favours.
With both doctors all I have been told about is tsh and t4, they haven't even mentioned the others. My gp only focused of t4, the private doctor only focused on tsh. I will get my blood results printed out and post them on here to gain an understanding.
I had asked for all bloods necessary to be done but I was told by my gp it wasn't necessary. Not even to do something like cholesterol. Which I myself disagree with.
Cholesterol is unnecessary. Totally irrelevant. Your cholesterol will doubtless be high, at the moment, because your FT3 is doubtless low. The former will decrease as the latter increases.
But, high cholesterol is not a problem. It doesn't cause heart attacks or strokes or do anything nasty to you. If you try lowering it with statins, not only will you get bad symptoms from the statins, but you will further deregulate your hormones. Your adrenals cannot make sex hormones without cholesterol. Nor can you metabolise vit D3 - which in any case is probably low, as you are so hypo. You don't want to make it worse, do you? So, forget the cholesterol. It's a total red herring!
Thank you for telling me that! I had been told by someone to get it checked
Being totally honest, I'm completely new to this whole hypothyroid world and so far haven't been given any direction or explanation from my professionals. I probably sound like a clueless idiot, but I really want to learn how to sort and manage this so I can be the best mum to my kids. Because right now I feel like I'm just about treading water
Of course you don't sound like a clueless idiot. You aren't supposed to have to know all this. It's doctors who are clueless idiots, because they've been to med school, and they still don't know! Which is why we, the patients, are forced to pick up the slack!
The majority of people have been taken for a long, expensive, terrifying ride by Big Pharma, when it comes to cholesterol. They have had the living day lights scared out of them into swallowing a totally unnecessary drug, to cure a problem which doesn't exist, at the expense of their health.
It's true, that some time ago, due to bad science, cholesterol was thought to be a problem. But, that was disproved ages ago. But doctors are still pushing statins on people that don't need them, because they get incentives from drug companies to do so. I confess, I'm rather impressed by your doctor, on that account! Well done him!
But the general public is still scared. I was told by one woman that statins saved her daughters life, and she would never have butter in the house! Well, for a start, there is no connection between butter and cholesterol. And, secondly, there is no way that statins saved her daughter's life, because her life was never threatened by cholesterol. It's probably threatened now, after years of statin-taking, because low cholesterol is a heart attack risk! We need it. So, glad to have put your mind at rest on that account. But, you really, really do need an increase in levo.
Don't worry as you have already experienced the inability of the Professionals to explain anything about hypothyroid and they also do not know any clinical symptoms. On this forum, most of us have had to 'Learn it Ourselves'. We have recovered or nearly so.
Yes I was in the exact situation with the irritability so I can sympathise- I never shouted ever before this time and was always calm, never made sense to lose my temper but became hugely irritable and awful rage and then would need to pass out after and crash badly - turned out to be adrenals/cortisol which was horrifically low but high cortisol can also cause issues and make you feel this kind of stress also - this is associated with thyroid and will be made worse if undermedicated - which you are! You can get a cortisol saliva test to check this out if docs won't look into anything.
Your TSH is still really high and needs to come down to nearer one so you need to get an increase in your meds. This then should be tested 6-8 weeks later and see if you need a further increase. You can't expect to feel okay until your thyroid is managed effectively - is the endo happy to keep you with a tsh over 8 or did they increase your meds? If they did nothing about it, then you are paying out for nothing. You should get a full thyroid panel including tsh, FT4, FT3 and thyroid antibodies for a clearer picture of what is going on and what can be done about it. If you have thyroid antibodies and have hashimotos, you are likely to be a bit up and down for a while but can be managed better and is temporary.
You are likely to be very nutritionally deficient also as had very high tsh and not eating properly so you need to get your Vit D, Vit B12, Folate and iron/ferritin tested - post your results on here when you do as docs normally pants in this area and tell you that you're normal when you're far from it. Additionally - did you have Gas and Air during labour - the nitrous oxide in this makes all the B12 in your body permanently inactive and this can make you feel really ill and even cause permanent damage.
All these issues have an impact on each other and once one goes down, it's hard to stop them all going down and turning into a never ending circle and you have to resolve everything alongside each other.
Why have you been put on metformin? I hope not just for weight loss - metformin has it's own horrible list of side effects? Are your blood sugar levels high or are you becoming diabetic? If not, this could make things even worse as will further lower your B12 if low already and can also make your blood sugar levels even lower which can also affect your adrenals further and make them worse if this is problem. Plus a few other things. It's not really dealing with the cause which is likely to be due to your other issues not being dealt with so this should resolve itself once dealt with. If you're not eating properly, you might already have low blood sugar so metformin might make it worse? If you've felt worse since taking them, then think about stopping them unless you have a clinical reason for taking them.
Many Gps and even endos are unfortunately quite honestly - Pants - and often do nothing to help. You would be better off paying for the blood tests only and posting the results here for free advice in my honest opinion.
If you can't get docs to do these tests, then just come back and we can tell you where to get all these basic tests cheap enough.
Try not to let it get to you, I'm not surprised you've been feeling so low, just take a breath and deal with the most likeliest causes one step at a time and know that it will get better with the right advice - unfortunately, this rarely comes from the docs lol
The best of us have been there so be a little less hard on yourself - maybe explain it to your four yr old and apologise, it's surprising what they can understand and he'll be fine if he knows you're not normally like this. If it makes you feel more comfortable about the situation, just look through all the posts on here and see the large amount where people have literally got to the end of tethers and want to give up and desperate because haven't been helped correctly and feel so ill so you're not alone
Haha I left to go do something half way through writing post and then realised most people above already said everything before me - sorry for repeats but tells you we're all mostly in agreement lol!
I'm going to get all those done as soon as I can. Hopefully tomorrow
I usually go in to get results, my gp scrolls, nods and then goes it's all looking well. Only to tell me when I go back a few weeks later that all was a bit up and down at the time.
The endo put me on metformin for helping with the weight loss. I was on it before as when I was trying for my daughter my periods were irregular and I couldn't get pregnant. It was put down to poly cystic ovaries and I was medicated with metformin which has never made me sicker in my life.
However, since being diagnosed hypo the gp noticed my thyroid was slowly dipping since September 2013 (my son was born in may 2013) and they hadn't noticed because they were focusing on the hormones and diagnosing poly cystic.
But now they realise it was thyroid issues the whole time, which also would have led to irregular periods and difficulty conceiving. I can't help but feel absolutely furious that if they'd noticed it back then I wouldn't be feeling so shit now. It literally took my body giving up for them to realise something written in front of them the whole time.
PCOS is connected to hypothyroidism too. But because they are so poorly trained and know no clinical symptoms we are given prescriptions for the symptoms instead of decent thyroid hormones.
Blood tests for thyroid hormones have to be at the very earliest possible, fasting (you can drink water) and allow a gap of 24 hours approx between last dose and test and take it afterwards. This helps keep the TSH at its highest as that's all they look at and it drops throughout the day. So TSH early a.m. is highest and by late p.m. it will be completely different. Taking hormones before test also skews the results.
I don't think doctors are aware that by taking tablets before test can mess up the results. Also some people take their tablets at bedtime, therefore have to miss this and take next morning after test and night dose as usual.
Yes , I imagine it was thyroid all this time - some people have been left for donkeys years, I had ataxia and near coma before they diagnosed me - all I needed was a simple blood test. Try not to get too angry, just get in control of it your self and make yourself better - glad they did the tests. You should be able to pick up the results a few days later so ask the receptionist for a print out and post here in a new thread.
Maybe get the Vit D done yourself as is important for your thyroid and it is very unlikely you'll get a T3 test back even if requested unfortunately. It would be good to get T3 checked as not converting T4 into T3 might be why your tsh is high even though T4 level seems okay. You may want to still get a cortisol saliva test (which can be done at home) - did you convince them to do a cortisol blood test?
You LH is more than double the FSH and this can indicate PCOS but all your hormones would have been wonky for quite some time to be honest. You didn't put the measurement units or ranges of these so wouldn't like to say for sure but seem okay. What is important is that you took the sex hormone tests on the 3rd day of your cycle and certainly not further away than the 2nd or 4th day as makes them a little irrelevant depending on what time of the month you took them. I hope they informed you of this?
hmmm that would be tricky then lol! I'm assuming you're not breast feeding or recently stopped etc and it can take a while for women to go back to normal after babies. I've heard there are other ways to tell when you're ovulating etc - like temp or other physical ways of telling - maybe have a google?? Or get your other health stuff sorted as likely not helping this situation and see if your periods start up again and maybe have another look at it then? I know you mentioned you barely ate recently so this could stop your periods too. I would imagine it will all change soon with the other stuff sorted
WHAT??? Gas and air mess up your b12?? I’ve never heard this. I had a lot of gas and air with my first child ( almost 9 yrs ago), and felt horrible for a very long time afterward. Actually I’m pretty sure I had post partum thyroiditis, but it went undiagnosed (naturally) until years later. Can post-partum thyroiditis be caused by the gas and air? Why don’t they tell women about gas-n-air messing with your b12 before/when they offer it to you? Do the doctors not know? (What am I saying— of COURSE they don’t know! ... What WERE they taught in medical school???)
Oh and also, one of the listed symptoms for low blood sugar (metformin lowers blood sugar) is listed on the NHS as: becoming easily irritated, tearful, stroppy or moody!
So tbh - quit these and it might help to try and eat a little more - often and regularly, not eating enough makes many people put on weight also
To save money as you are likely to have to do the tests privately it would be worth you sourcing your blood tests yourself.
I don't know where you are in the country but both Blue Horizon and Medichecks do the blood tests @greygoose has listed. They use NHS labs who do private work which is why they are a cheaper price than what private medical and health providers can offer them at.
You can do pin prick tests or you can go into a private/NHS hospital, depending on what provider you use, and have a traditional blood test. It costs more to have the traditional blood test.
The tests you want are are called something like Blue Horizon thyroid plus 11 and Medichecks thyroid ultravit. At this time you don't need reverse T3 the aim is to get your TSH down, free T4 up and free T3 up, to see if you have an autoimmune thyroiditis and what your nutrient levels are.
I've never had an NHS doctor have an issue accepting my blood tests done by these providers though I have only done a pin prick test once with these, but other posters have particularly with the pin prick tests. For some reason some GPs think that these providers aren't regulated due to them showing results they don't want to see or they don't understand, and the patient having full access to the test results.
If you use Medichecks they send you a kit so you can go and have it done at a private/NHS hospital phlebotomy department. In the kit there is an envelope with the name and address of the lab it is sent to, and you should make a photograph on your phone of the envelope in case a doctor later challenges you about the lab used.
In regards to Blue Horizon I know for my blood tests due to issues they have used the Doctors Lab and a Surrey hospital lab. (I live in London) However they don't routinely tell you what lab did your tests. However if you go to a Spire, Nuffield, BMI or NHS hospital phlebotomy department you simply tell any doctor if you are asked which hospital you went to.
I actually live in the west of Ireland. But even though this site is UK based, it seemed the best site I have looked through for thyroid related help.
I am going into my gp at 11 for my bloods today and will give them the list to do. I would hope they won't have any issue, but with them you never know
Hypothyroidism affects everything in our body and lack of thyroid hormones interferes with every single thing. Many women become hypo after a birth but it might be a while before they are diagnosed.
There are billions of T3 receptor cells in our body and we have to have sufficient T3 (converted from T4) to feel well.
Levothyroxine is T4 only. It has to convert to sufficient T3 so we have to be an optimum which means a TSH of 1 or lower with Free T4 and Free T3 towards the upper part of the range but these are rarely tested but are given 'other' prescriptions for clinical symptoms instead of a decent dose of thyroid hormone replacement.
OK so, I don't exactly understand my bloods but the printout I've just gotten from the last time they were taken (August 14th) is:
Free t4: 22.6
Tsh:7.5
Prolactin: 248
F s h: 5.5
L H: 14.2
Oestradiol: 201
I've had my bloods taken this morning and gave them the list you all recommended on here.
The nurse had "never heard of" ft4 or ft3 which I then explained stood for free t4 and t3 which she looked surprised at and said she'd never heard of them. She also said she doesn't test for vitamin d because it's too much hassle unless she feels it's really needed which she didn't. But she's tested for all of them bar vitamin d and they should be back this week
Well, I think your nurse needs replacing. There is a lot of scientific evidence now that thyroid patients have a higher than average population incidence of vitamin D deficiency. Do a print out for her next time. Lots of stuff on the internet so she doesn't have to search far.
Most people with a thyroid condition who are taking levothyroxine need their TSH to be in the range of 1.0 or a little lower to feel well. This is the experience of people on this forum. Doctors will not tell you as they do not know and are not taught.
Doctors are going by the thyroid levels of a normal healthy person who has never had thyroid disease. They think if they return you to anywhere within the range that is normal for healthy people you will be fine. The range is based on healthy people not on people with thyroid disease who are taking medication to maintain thyroid hormone levels.
When we have thyroid disease we need to have a good amount of thyroid hormone and our FT4 and FT3 needs to be in the top third of the laboratory range to start feeling well. Since doctors rarely test FT3 how would they know anything about it?
Is it everyone’s experience that once their thyroid hormones were sorted out, the irritability sorted itself out? Or, for those who’ve experienced it, did it take more of a holistic balancing — ie B12, iron, etc, in addition to T3/T4 — to get the irritability ironed out? Could the irritability be related to adrenals? (Sorry if someone has already addressed that directly; there were a lot of really detailed replies, and I might not have read all of them in full). Even though I feel loads better than I did a few years ago, I do still contend with spikes of irritability from time to time. It seems to be when I am stressed or particularly tired, more (for me) than times of potentially low blood sugar. If it is adrenals, are there specific treatments/ protocols that can treat or, dare I say, cure adrenal issues?
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