Taking 50mcg Levothyroxine daily before food, meds & caffeine for 1year
Gradually developed sharp hip pain, still have low mood lack of motivation & energy
Weird furry tongue, poor taste and no smell and no appetite.
Can't sleep, well 2 hrs at a time, prescribed various strengths of amytriptaline, foggy forgetful and clumsy. Oh and have just had thyroid scan as lump growing, turns out a cyst which I can feel when I swallow. No removal on NHS?
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J1972
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Do you have a TSH reading ? You are still on a starter dose and should have had regular testing and dose adjustments. You also need thyroid anti-bodies tested TPO & Tg to rule out Hashimotos.
B12 - Folate - Ferritin - VitD also need testing and need to be in a good place
Improving your thyroid and vitamin levels may help with some of your symptoms ....
The hospital did all the bloods a long while ago but never told me, even if they did then I wouldn't have known what to do with them. I asked last week for TSH and the nurse said we don't do that?
I do recall the doc saying we do know your a phosphorus waster, but again I have no idea what that is.
OMG - Hypophosphatemia no wonder why every doc looks at me gone out when I say I don't drink. (I don't) but I have craved carbs since a child and never put weight on until started Levo.
Low cardiac output - I started statins 2010 due to heart not pumping enough so was really short of breath, just had another scan and doc doubled my dose.
I also have the depression.
Thanks so much for your response I will log on now and make an appt with GP
Statins block cholesterol and VitK2 and CoQ10 - they do not help your heart to beat faster or stronger. Low thyroid could be the cause of both .... you need a dose increase !
Marz and Greygoose, thank you for your advice you were correct, today I had my GP appt and said I'd been talking to thyroid uk and it appears nobody had told me that TSH was 4.0 in December and they increased to 75mcg - every other day and 50mcg other days until I get my bloods done again, renal? I had so many symptoms to discuss I forgot to ask about vitamins and minerals, however she told me that my hip X Ray's were normal, leading me to muscle pains from antiretrovirals. I hope I start sleeping soon and my tongue returns to normal. I also did some research on anosmia, no human tests done only rats, increased Levo returned the sense of smell after the opposite was done to remove it. I haven't been able to smell for 6 years now.
I have been told by another hospital doc that controls my antiretrovirals that I can't take any metal vitamins as they affect the absorbtion of the pills that keep me from being ill.
Is 15mg a small dose as I could try for a while as my other bloods for antiretrovirals are perfect so I am fit enough to dabble.
Do you mean minerals? Zinc is a mineral, not a vitamin.
15 mg is a standard dose. Surely if you take it well away from your antiretroviral pills it would be alright. You wouldn't take them at the same time, obviously, any more than you would take your levo with any other medication.
The hip and knee joint pain I experienced was due to severe vitamin D deficiency. Ask your GP to do a vitamin D blood test. If you can persuade GP to test ferritin, B12 and folate too that would be a good idea.
Furry tongue could be thrush or candida. What has your GP said?
Cysts may self resolve or may need draining if they are making swallowing and breathing difficult. I don't think cysts usually need surgical removal.
Vitamin deficiency would make sense as I used to take a good quality A-Z almost a year ago and due to changing another drug I was told to lay off the vitamins as the metal ones affect the absorbtion of my antiretrovirals.
I too think thrush also as this came after being admitted and pumped for a week with different antibiotics, took two bottles of mega strength acidophilus over 2 months but no joy. I will go GP and get something stronger and get more bloods done to include vitamins.
I also read online a study with rats and loss of smell after they made the rats hypo then gave them Levo and their smell returned. My docs just look at me gone out.
Does you doc let you have more than a months pills at a time? mine has only let me have more as its Christmas this year, I was thinking of trying a higher dose myself?
You need daily probiotic for GI issues when Hypothyroid.. betaine hcl is another good digestive aid... but anytime you're on antibiotics..make sure you're taking at least a 50billion /cf probiotic.
I was taking 20billion I will get the higher dose now I know it's available. The thing is I'm on so many pills I dropped these to try and get to the bottom of what was causing my GI issues as my new antiretrovirals also upset the balance, so bad with bloating and constipation.
I agree with Hidden you are very likely extremely under medicated
50mcg is standard starter dose and bloods should be retested after 6-8 weeks and dose increased in 25mcg steps until TSH around one and FT4 towards top of range and FT3 at least half way in range
For full evaluation you ideally need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested
Low vitamin levels are extremely likely and low vitamins stop thyroid hormones working. Then bloods appear normal, but actually you can be extremely hypothyroid
See if you can get full thyroid and vitamin testing from GP. Unlikely to get FT3
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results
Marz and Greygoose, thank you for your advice you were correct, today I had my GP appt and said I'd been talking to thyroid uk and it appears nobody had told me that TSH was 4.0 in December and they increased to 75mcg - every other day and 50mcg other days until I get my bloods done again, renal? I had so many symptoms to discuss I forgot to ask about vitamins and minerals, however she told me that my hip X Ray's were normal, leading me to muscle pains from antiretrovirals. I hope I start sleeping soon and my tongue returns to normal. I also did some research on anosmia, no human tests done only rats, increased Levo returned the sense of smell after the opposite was done to remove it. I haven't been able to smell for 6 years now.
You are likely to need a larger increase than 12.5mcg. Normal increases are 25mcg at a time - so that would be 75mcgs every day
Retesting in 6 weeks
All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results
Make another appointment next week and request that thyroid antibodies are tested, plus vitamin D, B12, folate and ferritin.
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take on waking, but it may be more convenient and possibly more effective taken at bedtime
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
Marz and Greygoose, thank you for your advice you were correct, today I had my GP appt and said I'd been talking to thyroid uk and it appears nobody had told me that TSH was 4.0 in December and they increased to 75mcg - every other day and 50mcg other days until I get my bloods done again, renal? I had so many symptoms to discuss I forgot to ask about vitamins and minerals, however she told me that my hip X Ray's were normal, leading me to muscle pains from antiretrovirals. I hope I start sleeping soon and my tongue returns to normal. I also did some research on anosmia, no human tests done only rats, increased Levo returned the sense of smell after the opposite was done to remove it. I haven't been able to smell for 6 years now.
Marz and Greygoose, thank you for your advice you were correct, today I had my GP appt and said I'd been talking to thyroid uk and it appears nobody had told me that TSH was 4.0 in December and they increased to 75mcg - every other day and 50mcg other days until I get my bloods done again, renal? I had so many symptoms to discuss I forgot to ask about vitamins and minerals, however she told me that my hip X Ray's were normal, leading me to muscle pains from antiretrovirals. I hope I start sleeping soon and my tongue returns to normal. I also did some research on anosmia, no human tests done only rats, increased Levo returned the sense of smell after the opposite was done to remove it. I haven't been able to smell for 6 years now.
As others have said it is key to have results for B12 - Folate - Ferritin - VitD. If these are LOW in range you will not benefit from your dose increase. You also need anti -bodies TPO & Tg testing ....
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