Hi. I was diagnosed with hypothyroidism in March 2018 after several years of suffering from fatigue/cold intolerance/joint pain/dry skin/heavy, draining periods/hair loss/fluctuating weight/depression.
I was prescribed Levothyroxine and my current dosage is 100mcg but my symptoms of fatigue/cold intolerance/dry skin and debilitating periods have gradually returned. Also getting pins and needles (like my circulation is being cut off) in my hands and arms and muscle twitches in random places (?).
The worst symptom of all I would have to say is the fatigue - I sleep an extra 2 or 3 hours during the day despite getting 7-8 hours sleep and I feel worse upon waking. The fatigue is worsened when I have my monthly periods and this has been the case since I started them. The areas under my eyes look so dark, I am guessing from the lack of iron, as within a day or 2 of my period ending the darkness fades slightly. I wish I could make my periods stop altogether due to the crippling pain, heaviness, and the personal/financial inconvenience (my periods always seem to start at the worst of times so I have to plan around them, plus I go through a fair number of sanitary towels over the months) but in the past stopping my periods caused more problems than fixed them (when I was prescribed contraceptives).
I had my thyroid tested in April this year and I am still on the same dose. I really feel an increase is needed because of the above but I feel like an inconvenience and a hypochondriac in asking. 😭Can anyone please advise?
Thank you.
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Apricot_38
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Hi and thanks for your reply. Well, the thing is, my TSH is over range. Surely that would mean an increase? My endocrinologist has refused to increase my Levothyroxine because of how high my Free T4 is but my Free T4 is still in range.
The first thing I have to say is that you mustn't feel that you are an inconvenience and a hypochondriac! You're not an inconvenience to your doctor because that is his job. That's what he's there for: to make his patients better. But, if you don't say anything, he's not going to ask. he's just going to assume that you're ok: silence is consent. And, you're not a hypochondriace because you are hypo, and that can be quite a serious condition and make people feel very ill. You are ill, you're not imagining it.
100 mcg levo is not a high dose. It's more than likely that you need an increase, and your doctor should know that. It's a common thing to feel well on a dose to begin with and then find the symptoms start creeping back in again. It just means that your body is ready for the next increase. If you don't get it, then things could go from bad to worse.
When you had your blood test in April, did you get your results? You are legally entitled to have a print out of your results, so you should always ask for it. Ask at reception. You need to know exactly what was tested and exactly what the results were. We can help you understand them and advise you about the next steps you should take towards feeling well. You obviously have a lot of symptoms, and there's absolutely no reason why you should put up with them. So, ask.
Hi and thanks for your reply. My TSH is over range but my endocrinologist refused to raise my Levothyroxine based on my Free T4 level which they said was high in range. I was asked at the time of the appointment if I had any hypo symptoms and I didn't have any specific symptoms apart from feeling cold on and off so I didn't give a straight answer but I thought, if my TSH was over range, surely that would mean an increase in Levothyroxine which would stop any further hypo symptoms from occurring.
If your FT4 is high in range, and your TSH is over-range, that probably means that your FT3 is low and that you are a poor converter, and that's why you have hypo symptoms. Because T3 is the active hormone. But, doctors in general do not understand T3, what it is and what it does.
So, your next step should be to do private testing, if you can. You need to have FT4 and FT3 tested at the same time to see how well you convert.
Doctors are very, very ignorant where thyroid is concerned, so it's up to us to learn all we can and advocate for our own treatment. Your endo sounds particularly ignorant!
Many of the symptoms of hypothyroidism are caused by low levels of nutrients.
Hypothyroidism reduces levels of stomach acid making it harder for the body to extract nutrients from your food.
As a result many of us who don't do well on thyroid hormones even if they get optimised have to optimise our nutrient levels. The ones that get mentioned a lot on this forum are Vitamin B12, folate, Vitamin D and Ferritin (iron stores).
There are other nutrients that can cause us problems (this is not a complete list) when they are too low - selenium, zinc, magnesium, various other B vitamins, for example,
The symptoms of low nutrients can often get confused with symptoms of low thyroid hormones, so it is worth getting the first four nutrients I mentioned optimised, then eventually you may need to test and optimise the others.
You'll be amazed what a difference it makes to how you feel when your nutrient levels are good. But do remember that optimising your levels is only step one. You have to maintain your levels as well or else your levels will just drop again.
Thanks. I only take vitamin D due to horrifically low vitamin D which was not sorted by prescription tablets. I've been taking it for 6 months and haven't noticed any difference in how I feel...so maybe the low vitamin D isn't what was contributing to my symptoms.
I saw your nutrient results in another reply and greygoose's response.
I agree with everything greygoose said.
I had useless doctors who wouldn't test when they should have done and was left to fix my own nutrient levels.
When I first found out my vitamin D was below optimal (but nothing like as bad as yours!) I started taking 1000 iU vitamin D per day. My level actually dropped!
Nowadays I take 4000 iU per day to maintain my level, although I do take breaks from supplementing it every so often. I've found with trial and error that that intake works for me. I know there are people on the forum who take much more than me.
One of the things I've discovered is that for iron, if ferritin (iron stores) is low doctors will only prescribe supplements for me for 2 or 3 months and they think that is enough. They usually don't even bother to test again to see if my ferritin has risen.
The good news is that iron supplements of the sort that doctors prescribe is available without prescription in pharmacies in the UK.
I fixed my own iron and ferritin. I absorb it very poorly and was on it for nearly 2 years just to get it up to mid-range.
I'm post menopause now thankfully,no more monthly period nonsense anymore. There arent always a lot of upsides in getting older but not having to deal with heavy, painful periods is definitely one. Have you spoken to your GP about your periods as there is a lot they can do to help.
The Mirena hormone coil is often very successful in making periods far less heavy and painful. Many women find they hardly bleed at all. There are also meds you can take. I took Mefenamic acid for years, it helped with the pain and reduced the bleeding. It might be worth getting checked out for fibroids as they can cause the issues you describe and might need to be removed. They are very common.
During my fertile years I was constantly having to take iron tablets as my ferritin was so low but since I'm now past all that my ferritin levels are at the top of the range and I'm a strict vegetarian. Being low in iron can make you feel really poorly so please ask your GP for help.
I too was going to suggest looking at a Mirena coil fitted - the bliss of not flooding through various pads and tampons, having to wear dark trousers in case...
I had one fitted and everything stopped. It was bliss and I felt so much better. My GP did not believe in heavy periods, so the Well Woman clinic fitted it.
I am now well passed all that, but have a look and see if it would help as it would help your iron levels too.
*Vitamin D 21.8 (Less than 25 nmol/L = Severe deficiency, treat with high strength Vitamin D loading dose; 25 - 50 nmol/L = Insufficiency, supplements recommended; above 50 nmol/L = Adequate but provide lifestyle advice and consider supplements particularly in high risk groups) - after taking 800iu vitamin D tablets for 10 years and being on and off pharmaceutical doses of vitamin D)
Vitamin B12 327 (100ng/L: likely deficiency, commence treatment; 100-180ng/L: possible deficiency. If clinical findings suggest deficiency consider a trial of therapy and assessment of response. Suggest consult guidelines in Remedy; 180-250ng/L: may still indicate deficiency. If strong clinical suspicion suggest discussion with a haematologist; B12 >250ng/L: vitamin B12 deficiency not likely to be present.)
Ah! Just found these results. I thought you were going to post them in reply to my comments. lol
*TSH 5.15 (0.27 - 4.20 mIU/L)
Free T4 17 (12.0 - 22.0 pmol/L)
Free T3 4.2 (3.1 - 6.8 pmol/L)
Well, your endo really is an idiot, isn't he!
FT4 is 50% through the range - bang slap in the middle! Not high end at all. I think he needs new glasses!
FT3 is only 35.48% through the range, so you are a poorish converter, and your FT3 is too low, and that's why you have symptoms.
However, there's masses of room for an increase in levo to see if that helps increase T3 and get rid of symptoms. He hasn't a clue what he's talking about, I'm afraid. In fact, he sounds like a rather dangours doctors!
Did you know you have Hashi's - autoimmune thyroiditis? These antibodies say so.
after taking 800iu vitamin D tablets for 10 years and being on and off pharmaceutical doses of vitamin D)
800 iu is not enough to raise levels in a sunburnt gnat! It's not even a maintenance dose, so that's one of the reasons you don't feel any benefit.
Another reason is that when taking vit D you also need to take magnesium because the two work together. Taking vit D, even at the right dose, won't do much without magnesium. You also need to take vit K2-MK7 because taking vit D increases absorption of calcium from food. So the K2 makes sure it gets into the teeth and bones, and doesn't build up in the soft tissues.
Vitamin B12 327
This is dangerously low and could lead to irreversable neurological damage. I would suggest that you take sublingual methylcobalamin (B12), 1000 mcg, daily. And, at the same time, take a B complex containing methylcobalamin and methylfolate - because your folate is also much too low. When the sublingual methylcobalamin is finished, continue taking the B complex - probably forever - as a maintenance dose.
Ferritin 18 (11 - 307 ug/L)
What are you doing about this dreadful ferritin? Have you had a complete iron panel? If not, you should.
What doctors do not understand - and frankly don't even care about - is that being hypo - especially under-treated hypo - causes low stomach acid. Low stomach acid means that you cannot digest your food properly, and therefore cannot absorb the nutrients. So, not only do you need an increase in levo, and an increase in vit D, you also need to sort out the rest of your nutrients. And, frankly, you're pretty much on your own with that (although, of course, we're here to help!) because if doctors know nothing about thyroid, they know less than nothing about nutrition!
I wouldn’t use the coil until thyroid issues are sorted because these periods problems might rectify with adequate thyroid hormone levels.
It can feel overwhelming in receiving all this advice but there are steps to be worked through in a certain order. Great advice from humanbean regarding the very basic essentials in getting thyroid hormone working and as the lovelygreygoose has correctly said your results point to under medication and a possible conversion problem. T3 is the active hormone that brings wellbeing, and many members need to medicate a little bit of T3 with their Levothyoxine to raise FT3 levels.
If periods didn’t improve after thyroid hormone levels are optimised, you could consider your elevated thyroid antibodies that can induce chronic inflammation and disallow hormones to do their job properly. Strategies like a g/f diet and supplementing selenium and Vit D can help reduce the unwanted autoimmune response. It is useful to also have TGAb tested (thyroglobulin antibodies), although the strategies for reducing are the same.
Another angle would be to get sex hormone levels tested. LH & FSH are pituitary hormones, as are prolactin & TSH. The later two correlate positively and the first two inversely with prolactin. Therefore, if TSH is raised, so prolactin often follows and LH & FSH will fall.
LH & FSH are a part of the regulation of periods together with oestrogen & progesterone. Therefore, in hypothyroidism (that results in high TSH) menstrual changes are common.
There is vast knowledge on the forum and we all try to support one another as have been through similar experiences to yourself 🤗
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