Over the last two years I’ve learnt so much from this site and I’m very grateful. I’m looking for some advice relating to my hypothyroid symptoms.
I was diagnosed nearly three years ago and am taking 50mg of Teva. My symptoms arrived suddenly, and I still have bouts of anxiety and depression which are getting worse. The symptom which is causing me most problems is temperature swings (I overheat), which leads to burning in the soles of my feet, palm of my hands, lips and at times, my scalp. It is worse at night. In the winter I get very little sleep. I’ve been sleeping under a folded duvet cover with a light blanket to hand if I get a little chilly (1tog duvet has been to hot for me) but last night I woke freezing and shivering and had to pull the duvet over the top of me.
I still have bouts of anxiety/depression (mostly at about 4pm lasting a few hours, which worsens in the winter)
I’ve had variety of tests, most of which I’ve instigated since my GP (I’ve seen about seven in my surgery) has no ideas but is adamant that these symptoms are not down to my hypothyroidism. My T3 has been low but it’s in range so they’ve refused to consider it. I’ve seen a Neurologist who also had no idea, with her only option being painkillers for the burning symptom.
I suggested to my GP that I go to a private consultant which he agreed with. I keep thinking this may be a general hormone issue. I really need some advice since I’m not sure what type of consultant I should go to. To complicate the issue, I had a female hormone blood test done and the results mean very little to me and seem strange. (All protocols suggested on this site followed)
I used the Thyroid calculator to work out the % for TSH, T3 and T4 but they seem bizarre and so very different from my previous results, and I can’t believe they are true.
6th Nov 2023 Private onedaytests
Free T4 1.25 ng/dL (0.93 - 1.71) 41.0%
Free T3 3.00 pg/ml (2.02 - 4.43) 40.7%
TSH 2.49 uIU/mL (0.27 - 4.2) 56.5%
25 Feb 2023 NHS
Free T4 (fT4) 19 pmol/L (12 - 22) 70.0%
Free T3 (fT3) 3.7 pmol/L (3.1 - 6.8) 16.2%
TSH 2.38 mIU/L (0.3 - 4.20) 53.3%
T4:T3 Ratio 5.135
I also take Losartan Potassium which I have found out can have siders effects of burning feet, hands and lips but I’ve been taking this for 15yrs so don’t think this is the cause but could request a different medication.
Do you think an Endocrinologist will cover this area and if so, can someone recommend a good one please? I live in London but am prepared to travel.
Thankyou
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FW23
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Well 50mcg levothyroxine is only the standard STARTER dose
Your results show you are under medicated and in need of next 25mcg dose increase in levothyroxine
Are you lactose intolerant on lactose free diet that you are taking Teva levothyroxine?
You don’t need endo at this stage
Just ….Request/insist GP increase dose levothyroxine to 75mcg
Also request they test vitamin D, folate, ferritin and B12 now
Burning feet is frequently low B vitamins
What vitamin supplements are you taking
Retest thyroid in 8-10 weeks after increasing levothyroxine to 75mcg
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Testing options and includes money off codes for private testing
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Hi Slow Dragon thanks for getting back to me so quickly. I've disscussed my medication several times with my GP and they always claim everything is in range so won't discuss changing it. But I'll have another go, maybe take my husband. I've been trying to cut out gluten and lactose and will be more strict with myself to see if helps.
I was given Mercury Pharma by mistake last year and was really pleased but after a week I began to have an upset stomach and felt rather unsteady when walking. I also had a change of varifocal lens which I thought might a problem, but I returned to Teva and that seems to sort the issues out.
I've taken a Bcomplex but not regularly since I always felt it upsets my stomach but I'll have another go.
For someone on Levothyroxine, your TSH should be 2 or under at least. It is often mentioned on the site that most people feel well at about 1 or under. Plus, you are on a very low dose of Levothyroxine which will probably be making you feel much worse, irregardless of brands.
Thank you for your replies. Yes I was aware that my TSH should be under 2 but I've had several blood tests and all of the GP's at my surgery are only interested in my T4, which has always been 19pmol/L (12-22) or above, which indicates to them I'm adequatly medicated and so there must be a different cause of my symtoms. They've even sent my results to an endocrinlogist at the hospital with the same reply, all is fine. They constantly want me to take statins which I have refused. I'll ring my GP tomorrow and try to get an appointment with them. Thank you I feel I just have to go in there and really push for an increase.
So your cholesterol is high? That suggests that your FT3 is low, and that you are a poor converter. You don't need statins, you need T3. And that would probably help your hair, too.
all of the GP's at my surgery are only interested in my T4, which has always been 19pmol/L (12-22) or above, which indicates to them I'm adequatly medicated
Do you test early morning, only water to drink between waking and test and last dose levothyroxine 24 hours before test
Free T4 1.25 ng/dL (0.93 - 1.71) 41.0%
Free T3 3.00 pg/ml (2.02 - 4.43) 40.7%
TSH 2.49 uIU/mL (0.27 - 4.2) 56.5%
Obviously these recent tests show you need dose increase in levothyroxine
Highly likely low vitamin levels
Get vitamin D, folate, B12 and ferritin levels tested
So it possible you might eventually need around 97mcg Levo per day
61kg x 1.6mcg = 97.6mcg
Eg
100mcg x 6 days week and 87.5mcg once per week
Or
100mcg x 5 days week and 87.5mcg twice per week
Some people need slightly less…….some need higher dose
So when you test after 2-4 months after increasing to 75mcg ….then, assuming results show still needing dose increase…..consider increasing to 87.5mcg daily
Very interesting paper helvella 👍 my ears pricked up when I saw the post about the burning feet, I never suffered from burning feet even when I was extremely hyper (graves thyrotoxicosis) thyroid storm, then eventual full thyroidectomy.I started to notice my feet were burning around one month after thyroidectomy, I was put on levothyroxin 125mg, but this contained lactose and after arguments with my gp about my gut issues due to the levothyroxin being the cause, because I was fine gut wise before ingesting the levo he eventually got me on teva t4.
This was far worse... And bloods confirmed I was not converting well so put on T3... This as not stopped my feet from burning, they are constantly hanging over the bed.. ( and thank god it's now winter as it's heaven to pop them out to feel cold air).
I've told my gp who tested me for diabetes, (negative) although my B12 was 312 my gp said that's fine, and to just soak them in cold water before bed🤦♀️ that never worked.
I've had high calcium for years ignored by my gp, I now have the diagnosis of primary hyperparathyroidism.
My feet have swelling in the ankles, and I have calcification in most joints, my gp as stopped trying to help me, not even listening to my pleas to be sent to a rheumatologist.
Honestly they are so painful, I even have a spray bottle of chilled water I take to bed ESPECIALLY in summer and I spray them constantly over the bed🤦♀️.
Where to turn now, as gp will not entertain me, I've tried gels, foot rubs, to no avail, I've got all this going round my head, and recently got diagnosed with an eye stroke.. (attending hospital today for cadiotic artery scan)
On a recent F18 pet scan I had a lot of inflammation in glands, saliva, tonsils, lymph nodes, pituitary, liver, (inflammatory in nature) and at the eye clinic it said (clots) with inflammation in the optic disc🤷♀️ no idea what all that means, but could I have an inflammatory condition causing my feet to burn🤷♀️
Honestly tried quite a lot helvella 🤦♀️ done the Aloe Vera, purchase the Harrogate magnesium spray which wasn't cheap, as on the parathyroid site some said magnesium can help with burning feet, I even did the ice cube thing,.. Rub the sole with an ice cube before bed.I honestly think it's an inflammatory reaction and I would think a rheumatologist could advise me better than a gp, but it's not happening, they just don't want to know, eventho they agree my ankles are swollen, but just put the gel on you were prescribed (ibuprofen) which I do.. But doesn't do anything.
My gp only wants to prescribe opioids for pain and I've refused them, I have ostio arthritis and ostiopeania, but my mother had rumertoid arthritis and suffered with hypothyroidism, we both seem to have the same problems (thyroid) and arthritis, again I think I need to see a specialist... No doubt I'll have to go private again as gps don't want to know 😔
Well I was diagnosed with fibromyalgia in 2005...but no burning of my feet until I started on thyroid hormone in 2019, I read the article you posted, and yes it could possibly be that condition 👍 but gp won't entertain me, just keep using the ibuprofen gel🤦♀️.I notice when I'm up on my feet my ankles are swollen, spilling over my trainer tops, when I take them off my feet resemble the trainers shape .. (I don't have them tight they are loose due to the fact my feet swell.
And my knees look like 2 puddings, no cap definition and are also painful, but don't get hot🤷♀️
Burning pain in feet without redness can be a symptom of undermedication for hypothyroidism. If my feet burn during the night, but are not red or hot to the touch, then it usually resolves by adjusting thyroid meds.
But I also have Erythromelalgia (abbreviated to EM for ease), which also manifested after starting on thyroid hormone. I firmly believe there's a connection, but medics aren't in the least bit interested. I did fight for the diagnosis, on principle. But there is no cure, nor any specific medication. As you've said, pain killers are all that get offered. I don't routinely take pain killers or any other medication for EM.
I have found that for me, there's a very strong link between diet, histamine intolerance and EM symptoms. Taking an antihistamine when the pain wakens me at night (usually cetirizine), in combination with paracetomol, can sometimes help to minimise the EM pain.
The redness and feeling hot to the touch means that the skin is also drying out, so I also use the aloe vera gels mentioned above by helvella , which help to soothe and rehydrate the skin.
I rarely wear anything on my feet other than open sandals (no socks), because the 'friction' created by anything touching the skin sets the EM off. I also sit with feet elevated slightly above hip level whenever I can, as this helps to keep swelling down.
Yeah my son is horrified I don't wear socks😂, I just can't stand them, I sigh when I get those very fluffy bed socks for Christmas 🤦♀️ I have a draw full of them.As for under medication, well thats where the problem may lie, as I'm struggling with the t3 and t4, giving me bad gut issues absorbtion problems, some bloods show TSH /T3 as over medicated, then some show under medicated, this as been going on since I started on the thyroid hormones.
And a mass found in my right thyroid bed may be a peice of thyroid tissue left over from my thyroidectomy, or an overactive parathyroid gland🤦♀️ it's all a mess and no gp at my surgery wants to know.
But good news, I am being sent to an endo about my thyroid medication, it's supposed to be an urgent referral as the gp won't re do my T3 prescription until I see the endo🤷♀️.. Will I come out of that appointment wiser to what's happening? ..... I doubt it.. 😠
Thank you for all the suggestions. Burning in my shins and the soles of feet were some of the symptoms that began in the middle of the night, along with sudden drop core temperature, uncontrolable shivering from head to toe and a massive rise in my blood pressure. This was 36 hrs after the AstraZeneca vaccine and lead to my diagnosise of hypothyroidism. This may of course be a coincidence.
The burning in my feet, hands etc seem to be driven by a rise in my core temperature, if I can remain cool theres very little burning. The burning is less in the summer because the air temperature is within a small window and I can adjust clothing, wear sandles etc, only the nights are difficult but not as bad as the winter. Going on the underground at anytime of the year is difficult and I try to avoid lines that are always over heated. On holiday in an air conditioned room set at around 18 degrees there's no burning, it's bliss. So maybe more holidays are needed. I did have an EMG and that stopped the burning for about two weeks and then it slowly returned. I had considered a tens machine or maybe acupuncture.
I'm so grateful for all of your replys and I'll try them and see. First I'll go back to the GP but I'm not holding out much hope. They tend to agree to blood tests then send me a text saying all is fine and in range. I think to avoid seeing me, I might have been a bit challenging on a few occasions. Thanks again for your time.
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and a week later add a separate vitamin B Complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
Igennus B complex popular option too. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 until over 500
Post discussing how biotin can affect test results
Hi slowdragon ❤️Honestly there's a lot going on health wise with me at the moment (diagnosis, primary hyperparathyroidism, eye stroke 🤦♀️) FNA at Liverpool last Wed, took cells)
But as always again last nite my feet were burning so bad, I did try the better you B12 spray but it made my gut issues worse as did the vit D spray,... I did speak to a gp some months ago in response to blood tests for thyroid, but he did say "I wonder if you would feel better taking B12 injections" as I mentioned not stomacing the B12 spray... But nothing as come of this... And in the meantime I've been back and forth to Liverpool (parathyroid specialist) and carslile (eye specialist 🤦♀️) so the B12 as taken a backseat.. But could you recommend a good B12 that won't upset my colitis /lactose intolorence?
Oviously I'd love to have the injections, bypass the stomach all together 👍
Thanks slowdragon, I'll give it a go... But I still want to see if my surgery will offer me the B12 injections, I really need to get my B12 up as it was 312...but of course gp said its actually fine🤷♀️
No, and they often feel cold to touch. The worst affected are my toes and ball of my feet. But it can also be the palms of my hands, lips and scalp. My scalp only burns in very cold weather at night. I somtimes put some fabric over it and it seems to help. I do all sorts of little experiments. Putting my feet out of the bed seems to make it worse as if my body is trying to warm them up and making it worse. Once I'm out of bed and walikng it goes. Now that I'm sitting they're burning.
This does suggest that it may be insufficient thyroid hormone causing your burning symptoms. Cold extremeties are a classic sign of hypothyroidism. If you're still on 50mcg of levothyroxine then an increase to 75mcg definitely seems worth trialling.
Sounds like neuropathy which can be caused by both a Thiamine (B1) and a B 12 deficiency. Hyperthyroidism can cause a deficiency of B1. I suffer from this and take 100 grams B1 per day in addition to a complete B multi which has really reduced my nerve pain. Also can help with gut issues. There’s a guy on YouTube who has done a lot of research on fibromyalgia and small fibre neuropathy. Link below if you’re interested
Thank you so much. I'lI certainly look into this. I just went to the Gp and she said if I was happy to go private she knew of a brilliant endocrinologist. So she's sent me a referral for him , I'll see how much it will cost. Feel as if I've been kindly hoodwinked. 🫣
I know it's no answer to the cause, but my bedtime hot feet are completely addressed by taking to bed with me a covered hot water bottle that has been frozen, In the daytime it lives in the freezer.
A person can be taking these blood pressure meds without problem and suddenly developed really dangerous side effects.
One of my friend's sister had been on ACE inhibitors for several years and then woke up one morning with swollen lips etc. Very dangerous. She was developing an anaphylactic type reaction. Lucky for her the doctor at the emergency recognized the cause and she was immediately taken off the drug.
Get your doctor to switch blood pressure meds and find out if losartan was the cause of the problem. That can't be so difficult to do.
Just because you have been taking Losartan for 15 years doesn’t mean it’s not causing you issue's now …. I also have burning skin syndrome saw neurologist who diagnosed me with (small fiber neuropathy without a cause) it hasn’t bothered me for a long time but when it was my skin felt like I had a horrible sun burn but looked totally normal… I developed this after my after thyroidectomy prior to never experienced this before.
Sorry no real answer other then in my opinion it’s related to the thyroid issues and acts up when Im feeling a little off.
No she did absolutely nothing other then check my reflexes… stupid actually to pin Small Fiber neuropathy on me without ruling other things out … Lazy ! I question the diagnosis because I was just recently diagnosed with possible Drug induced Lupus and of course the Derm who did biopsy on weird rash doesn’t believe the labs diagnosis…. I think everything is connected from migraines, vertigo and night blindness to small fiber neuropathy (no cause) burning skin because my issues just keep piling on.
I'm afraid I cannot comment on the thyroid part but wondered when your burning feet started and if it is related to the covid vaccine. I have been diagnosed with small and large fibre neuropathy (peripheral neuropathy) so my feet are constantly on fire and has spread up my legs and affecting parts of my torso. I saw a consultant who arranged an EMG test plus an MRI. He suggested last year it was due to the vaccine which I knew already of course. The hospital has since put it in writing that the cause was the Pfizer. I have also been plagued with nasty skin complaints also a recognised side effect. I know this won't help you except maybe answer some questions and sadly there is no cure or proper treatment. I have been offered high doses of amytriptolene but this is a known cause of atrial fibrillation. I pointed out I already have a prolapsed heart valve which they had overlooked!!!!
Since this was a symptom of my Hypothyroid diagnosis which arrived 36hrs after the AstraZeneca vaccine, I've always been dubious. It's a reconised as a side effect which lasts a few days only but no longer.
My daughter and I had Covid in early March 2020, we had terrible fatige, bouts of being very very cold and recurring eczama on out face, chest and an upset stomach. We're pretty sure it was Covid because my husband was very ill with flu at the time and 6 weeks later diagnosed with a pulmonary embolism and long Covid. But as I've been told this may all be just a coincidence. Hope things improve for you.
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