Hi, I've recently started treatment for hypothyroidism. I'm a 50 year-old male. For several decades my TSH was just over 10 but thyroid treatment was never mentioned to me despite many unexplained health problems including extreme fatigue.
I went to the doctor at the start of the year because of memory problems and he ran a batch of tests. My TSH was 11 and he told me that my body was attacking my thyroid (so presumably that means Hashimoto's). I don't have any details for other tests or reference ranges. In early February I was placed on 100mcg of Levothyroxine. A few days later the bloating in my stomach eased considerably – this was unexpected as I've experienced constant bloating for decades and it has never eased off. But is this too soon for thyroid medication to be responsible for the change?
A month after starting treatment I developed pins and needles in the little finger and half of the ring finger in my left hand. It was intermittent at first but became constant after a few days and hasn't changed. Out of nowhere I also developed classic symptoms of hypothyroidism unlike those I'd ever experienced before, such as 24-hour sleepiness, lack of energy, breathlessness and cold extremities. The fatigue that I'd known in the past was limited to distinct periods of sleepiness, always in the afternoon, so this 24-hour blanket of fatigue is new.
If anything I would have expected Levothyroxine to produce side-effects of hyperthyroidism. Can anyone explain why Thyroxine would give me symptoms of hypothyroidism that I've never experienced before?
My GP has upped my dosage to 125mcg but do these symptoms suggest any other problem?
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dmcleman
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I think it is likely that hypothyroid symptoms have finally caught up with you rather than Levothyroxine causing them. It's not an uncommon thing to experience when starting replacement, similar to not realising how hungry you were until you finish a meal. Your TSH must still have been high for your doctor to increase your dose to 125mcg.
The aim of Levothyoxine is to replace your lacking hormone and restore you to euthyroid (normal) state. You should not feel hyper when the dose is correct but there will inevitably be a little over and undermedication until you are stable which is why bloods are monitored after dose adjustments. It can take a few months to arrive at an optimal dose which should relieve most symptoms but it will take a lot longer to rid yourself of symptoms you've had for 10 years.
Carpal tunnel syndrome is a very common hypothyroid symptom which may be causing the pins and needles in your hand. CTS often resolves when optimally medicated on Levothyroxine which will be when your TSH is just above or below 1.0. Low B12 can cause pins and needles in the hands and feet too.
Ask your GP to test ferritin, vitamin D, B12 and folate as hypothyroid patients are often deficient/low and these deficiencies can cause breathlessness, musculoskeletal pain, fatigue and low mood similar to hypothyroid symptoms. Post your results with the lab ref ranges (the figures in brackets after your results) in a new question and members will advise whether supplementation is required.
To maximise absorption and uptake,take your Levothyroxine with a full glass of water on an empty stomach, one hour before or two hours after food and drink, two hours away from other medication and supplements and four hours away from vitamin D3, calcium, and iron. You can take Levothyroxine morning or nighttime.
Leave 24 hours between last dose and blood draw to avoid skewing results and arrange your blood draw early in the morning when TSH is highest. Both points are important for patients whose doctors are reluctant to increase dose when TSH is 'normal'. Ask for printouts of your results with the lab ref ranges (figures in brackets after your results) as 'normal' is a broad range and its helpful to know where in range your results are.
Autoimmune diseases are thought to start in the gut and many members, but not all, find a gluten-free diet can improve digestive and gut issues and reduce Hashimoto's attacks and antibodies.
Dmcleman, you are now. I think it was very remiss of the doctor/s who left you with TSH 10 all those years. Please read the links I posted as there is good info in them.
Hello dmcleman,
Four years ago I was diagnosed with Hashimotos and prescribed 100mg Levothyroxine like yourself. I also suffered good effects (stomach bloating disappeared along with IBS) and bad ( vertigo, heart bumps and palpatations, whooshing in ears, etc). Going from my own experience I would guess all your symptoms are without doubt due to your thyroid meds.
I have since learnt it is thought dangerous to start a patient on an immediate high dose of Levothyroxine due to risk of arterial fibulation.
If you have Hashimotos you may flutuate between feeling hypo & hyper until you can reduce the level of your antibodies. The doctor will tell you there is no treatment for this but it is generally thought that a gluten free diet and changes in life style encourage antibodies to reduce and stabilise.
After being diagnosed I starting educating myself and found Your Thyroid And How To Keep It Healthy and Stop The Thyroid Madness to be particularly informative books.
This forum will recommend you access your test results complete with ranges , numbers in brackets, and post them on here for analysis. Members can then guide you on what is felt to be going wrong.
It is horrid that you have felt ill for so long. I hope you found some answers soon.
Thanks for the advice, Gill. Especially about the fluctuating between hypo and hyper which certainly fits me - in the past I used to be extremely heat intolerant, now I'm wearing four pairs of socks in bed
If your hypo symptoms continue to get worse (mine did after starting Levo) I would suggest you start looking into reverse T3 and find out if you are converting the T4 in your body. When you next get a load of tests get your FT3 tested and at the same time get a RT3 test done (ordered from Genova) the TPUK website has all the info.
I would also suggest you get a 24hr saliva stress test (from Genova or blue horizon) if you've had untreated hypothyroidism for years your adrenals may be damaged.
These tests should give you more of an idea if Levo is right for you. I took it for 4 months and it left me bedridden and I'm still trying to recover.
Thanks, Spanglysplash, t hat makes a lot of sense. I wonder whether I should ask for the tests from my GP or ask to see an endocrinologist? I think my GP is unsure of what my symptoms mean so maybe it's a good time to get a referral.
I've been reading about adrenals and it certainly fits. I can't believe that doctors don't recognise insufficiency.
You sound like you've had a bad experience too, hope you get better soon!
The nhs don't offer the 24hr saliva test or the reverse T3 test hence having to pay privately. I had the morning cortisol test on the NHS but as my morning cortisol is just in the normal range then drops to below range for the rest of the day it all looked normal. I think they offer the 24 urine adrenal test on the NHS but I can't be sure. I did a search on the Internet and found the phlebotomy service document for my local area, a useful tool to have. See if you can find yours.
Hi, Spanglysplash, thanks for the info. How do you get someone to interpret the tests? Did you agree in advance with your GP before getting the tests done?
Hi, the Genova 24hr saliva test comes with a basic interpretation, but I've been reading, your thyroid and help to keep it healthy, stop the thyroid madness books 1&2, hasimotos - the root cause, recovering with T3 so I've picked up a bit of info from those books.
Stop the thyroid madness website has a page on how to calculate your reverse t3 and ft3 ratio and what it means (I'll post the page for you)
I didn't agree in advance with my doctors, my endo completely disregarded my concerns over t4 conversion and laughed when I said I suspected an adrenal problem. My GP is better but doesn't fully understand all possible issues around the thyroid. But he lets me have any blood tests I think I need, even says I can add anymore tests on the forms I can think of later! Nice chap
Wow, you've got a gem of a GP. You're probably the only person I've seen say such a thing
I'm surprised at the Endo laughing, at least your GP is more open-minded. It looks like I'm going to have to learn a lot more about the test. Thanks for pointing out where to look.
It may be that at your age you should have started on 50mcg ,starting on too high a dose can cause worse symptoms until your body adjusts. I started on 50 mcg for 2 weeks before moving to 100mcg. Even then I had angina type pains and have to take beta blockers.
I have read just what you're saying, the dose should be tapered after age 50. When I started treatment it was one week away from my 50th birthday, so that's another borderline. I don't think my GP considered my age, he certainly never mentioned it.
My GP was keen to start me on a higher dose because that apparently is the new recommendation for most people - rather than start on a low dose and build up gradually while the hypothyroidism is getting worse all the time. I haven't seen that recommendation online, it was new information he got on a refresher course.
I agree it might have helped me starting on a smaller dose, hopefully it's all going to even out in time?
Hi dmcleman, I think you need to give your body time to adjust before thinking too much about alternatives and supplements.
You've only been taking levo for about 6 weeks, am I right? When I was diagnosed (aged 52 ) last April my TSH was 240 and they started very slowly with 25mcg as my hormone levels were so awful. The day after my blood test (but before I got the results!) I rode 22km on my new bike, admittedly having to stop on the way home for a rest (I'm not very fit, I said to my husband!). A couple of days later I started on medication and for the next week I could barely get out of bed. Walking 100m left me utterly exhausted. I was terrified - before medication, although I had known deep down there was something really wrong with me, I was still functioning, and now I couldn't do anything at all. Reading up made it worse - so many scary complications! So I decided I was going to take levo and nothing else until my hormone levels were sorted and stable, which took nearly 9 months, gradually increasing the amount by 25mcg intervals until my current dose of 125mcg. After about 7 months I looked into supplements (I'm taking vit D, B and C, and zinc and magnesium), and went on a gluten and mostly dairy-free diet. I now feel really well, so it is possible to get better even from the very depths.
There are many many recommendations out there and some of them are confusing and even contradictory. Your body needs thyroxine before anything else and it needs time, quite a lot of it, to adjust to getting it. You and I were both ill for years before we were medicated so our bodies had got used to doing without. Take it easy and try to get your blood results with ranges so you can keep track of them yourself. Then you will begin to see what is good and bad for you.
You are on the right path but it's a longish road to health - take it easy, give it time and allow one thing time to work or not before trying another.
Thank you, RustyMary for some good advice. It really is early days for me so I should wait and see how it goes. 9 months sounds ages, it puts my six weeks or so in perspective.
There are a lot of different options to read about but I think you're right, the most important thing is to give levothyroxine the time to work. Thanks for your advice and I hope you're doing much better now.
I too developed hypo. symptoms (on 50 mcg levo) My t3 rose alarmingly but once levo reduced to25mcg. I was o. k. I know 25 mcg considered a low dose but seems to work for me - we're all different after all!
Hi, foxglove, I'm relieved to know I'm not alone in developing hypo symptoms.
I'm not due to have my blood tested again until May so I'll know then what's happened to my T3. In the meantime I'm going to put up with the symptoms and see what happens.
Thanks for letting me know that I'm not the only one.
I was the same when I took Levothyroxine. I became so ill that I just wanted to die. I tried going without for a few weeks and I went back to the way I felt before I was diagnosed. I felt very tired all the time and I had extremes of temperature. I had brain fog and was far from well. I told my Endo what I had done and he said I must take the medication but he would let me try T3 alone. I have been on this ever since but I am still not well but I need to get the dose right. I am going to ask if I can try Armour when I go for my next Endo visit. I go on 20th April, I must keep trying to get as well as possible I have felt so poorly for so long.
Hi, kathro, glad to hear from you. It sounds like you've had a really bad time on it. It's good that you've got an Endo, I'm going to give it some time first before asking for a referral.
It's good to hear that they're willing to offer you other options, I felt that it was Levothyroxine or go it alone. Hope it goes well on the 20th, I'll be checking back for updates.
Thank you for your reply. I have been seeing this Endo for years now did not know he gave Armour to his patients until his trainee told me. I am so fed up being so poorly I am willing to try Armour although I have heard on here that it is hard to get the dose right. I am willing to give it a try. I'll keep you posted.
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) last April my TSH was 240 and they started very slowly with 25mcg as my hormone levels were so awful. The day after my blood test (but before I got the results!) I rode 22km on my new bike, admittedly having to stop on the way home for a rest (I'm not very fit, I said to my husband!). A couple of days later I started on medication and for the next week I could barely get out of bed. Walking 100m left me utterly exhausted. I was terrified - before medication, although I had known deep down there was something really wrong with me, I was still functioning, and now I couldn't do anything at all. Reading up made it worse - so many scary complications! So I decided I was going to take levo and nothing else until my hormone levels were sorted and stable, which took nearly 9 months, gradually increasing the amount by 25mcg intervals until my current dose of 125mcg. After about 7 months I looked into supplements (I'm taking vit D, B and C, and zinc and magnesium), and went on a gluten and mostly dairy-free diet. I now feel really well, so it is possible to get better even from the very depths.
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