Hi, I’ve recently been diagnosed with an under active thyroid. I’ve been feeling extremely unwell for the last couple of years on and off, severe headaches, chest pains and massively heavy periods that last months at a time. The doctor just told me I was peri menopausal (I’m 45) and gave me iron supplements. 4 weeks ago the doctor ran yet another set of blood tests and diagnosed me with an under active thyroid. He has prescribed me thyroxine but I’m feeling totally awful on it. Since I’ve been taking it my headaches aren’t as bad, and my periods have finally stopped for the first time in 5 years which are huge pluses for me but I have muscle fatigue, aches in my thighs and wrists, I feel as though I’m on a boat all the time, the world feels like it’s moving. I’m ok sat down but as soon as I stand up everything seems unbalanced. I feel shaky and sick all the time and my appetite is non existent. I barely have the energy to climb the stairs some days and I’m feeling so low. Please somebody tell me that I’m going to feel better soon because I need some light at the end of the tunnel at the mo.
Hypothyroid: Hi, I’ve recently been diagnosed... - Thyroid UK
Hypothyroid
How much did he prescribe? The problem often is that they don't give you enough.
It's no unusual to develop extra hypo symptoms, that you didn't have before, when you start levo. They will go away, slowly but surely, as your dose rises. When did he tell you to go back for a retest?
It could also be that you have low nutrient levels, and taking levo is putting a strain on your reserves. You need to ask your doctor to test vit D, vit B12, folate and ferritin.
When you go back for a retest, make sure that you have the blood draw as early in the morning as possible - at least before nine. Fast over-night and leave a 24 hour gap between your last dose of levo and the blood draw.
Always, always get a print-out of your results every time you have a blood test. If you live in the UK, it is your legal right to have one. 
He put me on 100mg and I felt really well for the first 3 days and but on the 4th day I woke up with diarrhoea, sickness and uncontrollable body shakes. The doctor thinks it was down to too high a dose and put me down to 50mg. I’ve been told to go back in 3 weeks as my tsh levels are still high and my t4 levels haven’t risen.
I’m on 50mg thyroxine and my blood results were tsh 29.5 and t4 7.2.
I'm not surprised you feel awful! That's quite a high TSH. You didn't get sick overnight, so it will take a while to get better but do go back for a retest as above, get copies of all results and post here.
When you post in future always show the range which is in brackets ,as labs differ.
I have been feeling really ill on and off since I had my little boy 5 years ago. I’ve been backwards and forwards to the doctor since then but I was told that all my symptoms were due to the massive blood loss I was having due to Peri menopause. My red blood cells dropped down to leukaemic levels several times. I had umpteen blood tests done and they told me my thyroid levels were fine. I was supposed to have them checked 3 yearly due to having an overactive thyroid 28 years ago which was treated with tablets and “cured” within 3 months. But the latest gp that I seen informed me my thyroids not been tested since 2009 and he suspects that all my symptoms have been down to an under active thyroid.
I’m totally baffled by everything, not really helped by the total brain fog I seem to be in.
My gp just told me that my pituarty gland produces tsh to make my thyroid produce T4. As mine wasn’t making T4 my pituarty gland was just over producing and taking thyroxin would replace it and solve my problems. I seen my gp on the day before yesterday and as I’m still feeling so poorly he took another blood test to check for diabetes which came back negative but I can’t have another thyroid blood test for another 3 weeks. They’ve just told me to persevere with the tyroxine until then and then maybe they will change the dose. But to be honest I’m barely functionable 😕
Standard starter dose is 50mcg. As you found out, it can be too much of a shock to start on higher dose
It takes full 6 weeks for each dose increase to have full effect
Bloods should be retested 6-8 weeks after each dose increase
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
Link about thyroid blood tests
thyroiduk.org/tuk/testing/t...
Link about antibodies and Hashimoto's
thyroiduk.org.uk/tuk/about_...
thyroiduk.org.uk/tuk/about_...
List of hypothyroid symptoms
thyroiduk.org.uk/tuk/about_...
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards from initial 50mcg dose.... until TSH is under 2 (many need TSH under one) and FT4 in top third of range and FT3 at least half way in range
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine. Also what foods to avoid (note recommended to avoid calcium rich foods at least four hours away from Levo)
nhs.uk/medicines/levothyrox...
Always take Levo on empty stomach and then nothing apart from water for at least an hour after.
Many take Levothyroxine early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.
verywell.com/should-i-take-...
Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients
See GP next week to get vitamins tested
Likely to have very low iron and/or ferritin with heavy periods
Come back with new post once you get results and ranges on vitamin tests
Thankyou both of you. I was under the impression that thyroxine would solve all my problems and everyone that’s asked why I’m looking and feeling so poorly always seems to know someone that’s taking thyroxine and they are absolutely fine and My husband thinks I’m putting it on as his mum has an under active thyroid and she’s fine.
I was beginning to think I was just going mad and my symptoms were in my head 😫
Re your husband, unfortunately there are degrees of hypo and his mother probably has a mild form. Please don't let him make you compete with her.
mistydog I don't think that necessarily follows. When I was diagnosed, my Endo said I was so ill that I had one foot in the grave, yet I then had 30 yrs of great health on levothyroxine. It only then went pear-shaped 11 years ago during the menopause.
Well nobody actually knows what she has and if she actually is well or not, or just carries on because she thinks it's normal, so let's just stop guessing, shall we?
"We" aren't guessing. It was you who wrote "his mother probably had a mild form", when you know virtually nothing about his mother. I wrote factually that that argument doesn't necessarily follow, and provided first hand evidence to back that up.
I don't know why you persist in arguing with me, but please stop. Anecdotal evidence, even if personal experience, is not fact. I could have written possibly, instead of probably, my bad. You are not being helpful to anyone whereas I tried to be supportive. I have tried to block you here but it appears that isn't possible.
One of our problems is that Levo does solve all the problems for millions of patients. We on this forum are a minority for whom this is not the case. I am not sure what percentage that minority is, I would love to know. It's like many things in life, if all goes according to plan life is easy and uncomplicated, once a spanner is thrown in the works it takes the intelligent or tenacious mind to work it all out and get us back on track. Our doctors are supposed to be the ones who work it all out, but usually they cannot, so we have to DIY.
I would say it's criminal to put someone on 100mcg as a starting dose as well. Against all the guidelines, I'd be looking at malpractice.
For someone who isn't elderly or diagnosed with a cardiac issue, it's not against all guidelines, and not malpractice. The CKS/NICE guidelines state that the initial recommended dose is:
For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs. This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.
If you look at the guidelines for taking Levo, provided by the manufacturer within the accompanying PIL, it will state something like The usual starting dose is 50-100 micrograms every day. Your doctor may increase the dose you take every 3-4 weeks by 50 micrograms until your thyroxine levels are correct. Your final daily dose may be up to 100-200 micrograms daily. Patients over 50 years of age: The usual starting dose will be no more
than 50 micrograms every day. The dose
may then be increased by 50 micrograms every 3-4 weeks until your thyroxine levels are correct. Your final daily dose will be between 50-200 micrograms daily.
But as we've seen here, when your body is completely out of whack, it can cause more problems than it solves to do this, better to start at 50 and increase after 4 weeks, surely?
It's very early days at the moment. Nothing works quickly in the Thyroid world so you also need a lot of patience and we need to start low and work up gradually so may sure you remember to retest every 6-8 weeks. You can keep posting results if you wish for guidance. Always remember to post your labs ranges as they differ from lab to lab so we need your labs ranges attached each time. Obvious at the moment that results aren't right but more critical as you get into the right area to fine tune them properly. Otherwise we would just be guessing. As your TSH reduces you will start yobferl a little better but in the mean time get plenty of rest.
Hello Mummytosix
Having just read through all these posts, you gloss over the fact that you were diagnosed with an overactive thyroid 28 years ago, took some tablets and were " cured ".
I think we need to know what this was all about.
I'm with Graves Disease, the symptoms of which can be an overactive thyroid. It can't be cured, but is treated in various ways, but ultimately it's an autoimmune disease, and something you have to learn to adjust and live with.
Please try and think back to what happened 28 years ago.as It might well offer a clue to your more recent health issues.
After I had my eldest son 28 years ago I had routine bloods done and I was told I had an overactive thyroid. They put me on tablets, I’ve got no idea what they were called and sent me for a scan. The doctor told me a may have to have some sort of radiation injection but I’m not sure how long after, days/weeks/months but the gp said that my levels were ok and I could stop the tablets.
Well, that sounds like postpartum thyroiditis, but I'm not with the knowledge to understand the implications of all this.
My sister had postpartum thyroiditis after the birth of her fourth child and was put on Levothyroxine 20 odd years ago. She is still on Levothyroxine and totally fine and yes, when I was put on it after my treatment for my Graves, I thought I'd be ok as was my sister.
I was ok'ish on Levo for a few years but never with the energy and wellness I saw in my sister. I went into an ever decreasing circle of wellness about five years ago, and my mental and cognitive functions became severely impaired.
Long story short I am now self medicating with NDT and feeling so much better.
I do still think your thyroid hiccup 28 years ago maybe relevant but I don't know enough.
I think it would be sensible to follow the suggestions, arrange a full thyroid evaluation including vitamins and minerals and antibodies because of previous history - and then repost on here where people a lot more able than me will be able to give you considered opinion, help, and assistance.
Your doctor may help you with these tests, but if not, there are private companies as detailed on this amazing site.
Aching bones is likely low vitamin D
Feeling like you are on a boat or drunk is frequently low B12.
Heavy and frequent periods likely lead to very low ferritin and/or iron. Are you still taking iron supplements?
Add results and ranges on vitamins if you have any
Insist that vitamin D, folate, ferritin and B12 levels are tested NEXT WEEK
Thyroid hormones need good vitamin levels
Meanwhile you can start improving vitamin C with diet
Adrenal cocktail can help support adrenal recovery
stopthethyroidmadness.com/a...
Ferritin, Eating liver or liver pate once a week, plus other iron rich foods like black pudding, prawns, spinach, pumpkin seeds and dark chocolate, plus daily vitamin C can help improve iron absorption
The heavy bleeding has stopped now and the gp told me that my red cell count had risen slightly, I’m taking 200mg ferrous sulphate a day.
My ths level was 29.5 min/L (range u 0.35-4.94)
My Free T4 was 7.2 pmol/L (range U 9.0-19.0)
If those readings makes sense to anyone.
These were done on the 1st May, I had a phonecall from the doctors on the 3rd of May saying that the doctor urgently needed to see me due to my test results but they couldn’t get an appointment for me as they were fully booked I had to wait until the 7th of May to ring for an emergency appointment. I was worried sick all weekend.
I'm in the US. I was on levrorhyoxine as well. It is not for everyone. It does cause muscle aches and other symptoms. I woke up one morning feeling as if I were on fire. I asked my doctor to switch my medication to armour thyroid and felt much better. Not everyone can tolerate all drugs. You need to talk to your doctor about a change. If you are like me the muscle aches will get worse.
In the UK our NHS thyroid hormone replacement is Levothyroxine.
The patient doesn't actually get a choice.
There are very few doctors prescribing NDT - even privately -
You would have more chance finding a doctor prescribing T3 - Cytomel - but would still have to pay for it, and currently this can be an extortionate amount of money compared to that charged in mainland Europe, for the identical product.
Consequently, many thyroid patients are self medicating in the U.K. because of the financial and or product choice restrictions placed upon them.
I’ve had similar symptoms and found I’ve Vitamin B12 deficiency which can go along with hypothyroidism so I’ve been taking a B12 supplement which is starting to help. If you have a blood test make sure it’s for Active B12
Hope this is useful info
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