Looking to understand if this is normal and how to cope.
I had a thyroidectomy a little over a year ago and along with the thyroidectomy Ive gained 30 pounds and inherited achilles tendonitis and extensor tendonitist (tops and back of both feet) and both of these issues will trade places, its seems every few weeks. I've had these issues so far for over 8 months which brings constant feet pains and depression from dealing with the pains.
For a few weeks I will have the extensor tendonitis on the tops of (both feet) and other times I will have achilles tendonitis on the back of (both feet) and with these 2 issues comes a numb big toe (only one foot) prior to thyroidectomy I never had (extensor or achilles problems) and my activities have not changed they actually been reduced a little due to the feet pains.
I purchased new sneakers and taken rest days and still I have these 2 painful issues that leave me unable to walk or stand for any length of time.
I explained these issues to my Endo and primary doctor but I get no help only met with go see a mental health doctor (pretty standard medical answer in the US) because per endo my numbers are good "sigh" being unable to walk or stand for any length of time is not good when youre trying to lose the weight Ive gained (weight gain is in my head) says the Endo.
Are these tendon pains normal and will they ever go away? I do the standard Vitamins (B12, B6, Magnesium, zinc and selnium) was doing Vitamin D (but I have IBS-C) so bad its not worth taking them I have enough issues with the bathroom.... I feel cursed.
P.s. seeing neurologist because of numb big toe and burning skin sensation (no rash) this person most likely won't help.
I keep saying I was fine until they broke me and sometimes I wish I never did this surgery, I thought by doing surgery my medical team would be with me during the process little did I know they would throw me away and call me crazy as soon as my number were considered perfect. 🙁
Anyone have solutions to get rid of these pains?
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Batty1
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It sounds to me as though you may have been undermedicated to gain so much weight. If you post your recent thyroid results and ranges I can advise if you are optimally dosed.
Is it likely that the tendonitis is linked to your weight gain rather than the thyroidectomy?
I agree with Clutter, you do sound very under-medicated. And, that, I'm afraid, happens all the time, due to their reliance on the TSH for dosing!
And, I'm now frantically trying to work out how weight-gain can all be in your head!
For the burning skin and numb big toe, have you tried Alpha Lipoic Acid? I've found that very helpful for neuropathy (burning skin and numbness, plus ataxia). I don't take it all the time, just when the symptoms become unbearable.
Here is my recent blood results and im currently on 125mcg (synthroid) 5mcg (cytomel) and because of cancer my tsh is to remain in the low range according to endo Im also curious if any medications Im taking could reduce my medication absorption (I take meds 3 hours after taking thyroid meds)
Current meds: premarin, prilosec, crestor (cholesterol shot up 35 points after surgery) HCTZ/ TRIAM (Maxide-25) waterpill and Stelara injection.
Well, I can't answer all your questions, but I certainly wouldn't take premarin under any circumstances, but if you do take it, it should be four hours away from thyroid hormone.
Taking statins is not recommended for hypos. Your high cholesterol is more than likely due to low T3, but as you haven't had your FT3 tested, we can't tell how low it is - the TT3 gives you no useful information. Statins are of no use to women, and high cholesterol is not a disease - and not harmful in any way - it is a symptom that something else is wrong in the body. Statins, on the other hand, can cause heart attacks, and a hell of a lot of other problems. They could be responsible for a lot of your problems.
TSH is totally irrelevant once you are on thyroid hormone replacement, unless it goes high. But your FT4 is slightly over-range. What you need absolutely, now, is an FT3 result. 5 mcg is a next to useless dose and won't be doing much for you if you can't convert very well.
Greygoose I find your info very interesting as I was recently advised to go on statins due to my highish cholesterol, which I wasn't to pleased about. I took them for about 3 months but when I studied the leaflet inside the box of tabs it read that hypos should not take statins. I asked another Dr if I should be taking them and told him about the leaflet and he said when statins were first thought about being given to hypos it was not a good idea, but that idea has changed. If thats the case why hasn't the leaflet info been changed. I've stopped taking them. I take 120mg thyroxine daily and have done for 30 years. I am now worried that my goitre is actually pressing on my trachea and may need to have my thyroid removed.
Sounds as if you are under-medicated, if your goitre is growing and you still have high cholesterol.
Your doctors are, of course, completely wrong about statins. And wrong about cholesterol. But, then, they get incentives to prescribe them, so they're not going to admit you shouldn't take them, are they!
Maybe you should start a new question, giving your latest labs, and let's have a look, see what's going on.
I found that it disappeared without treatment after improving my basic nutrients (vitamin B12, folate, iron/ferritin and vitamin D) and also improving my levels of Free T3.
I think the Free T3 was the most important for helping my feet.
Just being "in range" for nutrient levels and thyroid hormone levels is not enough to feel well. It is essential to optimise levels.
The first thing you need to do is get hold of copies of your blood test results from the last 2 or 3 years - the actual numbers and the reference ranges. Once you have them, post them in a new post and ask for feedback.
I only had TSH done over the years and it wasn't until I was diagnoised with thyroid Cancer last year would they even entertain full thyroid test and even still ive only had this t3 test and one prior.
Very few people living in the US seem to be aware of it, but you can order blood tests for yourself without involving a doctor or requiring insurance. In some cases the only requirement is pricking your fingers to get a blood sample, although it can be difficult to get enough if you order lots of tests. I don't know how you would arrange phlebotomy (taking a blood sample through a vein) in the US.
Links to companies doing blood tests for private individuals are about half way down the page. What things can be done depends on the state you live in.
Note that US doctors often do tests like Total T3, Total T4, T3 Uptake, Free Thyroxine Index, and none of these tests are of much use. As far as I know they were all devised before there were tests available for testing Free T4 and Free T3 directly.
On this forum the things we suggest people get done are :
TSH
Free T4
Free T3
Possibly Reverse T3 but it is an expensive test and is really only needed after other issues have been fixed.
Thyroid Antibodies - TPO and Tg
Ferritin/iron at a minimum but getting a full iron panel is best
Complete Blood Count (CBC)
Vitamin D3
Vitamin B12
Folate
There may be other things on that link I gave which might interest you.
A very good site for helping with interpreting and determining the significance of blood test results is this one :
Im really fed up and been thinking to do independant blood test on my dime only problem I see is getting medication if test shows things are not right.
Getting supplements for low nutrients isn't difficult. They are sold by lots of shopping sites online. You should ask us about what dose you should be taking and what results you are aiming for.
As for thyroid meds, people have more choice in the US with regard to getting thyroid meds than we do here in the UK. People do get prescriptions for NDT or T3, but I'm afraid I don't know where you find the information you need. Perhaps locally you could go into various pharmacies and ask which local doctors prescribe NDT (like Erfa, Armour and others - I don't know all the names) and/or T3. Please note that Armour is the most expensive NDT in the world and isn't any better quality than cheaper brands, so avoid it.
It is possible to buy NDT and T3 online without a prescription, but it can be difficult. I don't know what the regulations are about importing meds from abroad when you live in the US.
Can you become a member of a US-based thyroid forum on Facebook? There are loads of them and you may have to hunt for one that discusses buying without prescription.
Slow dragon I read your profile. Can you give a little run down of your gluton free diet or link to site I might give it a try. Im just worried about gaining more weight as it is now I seem to gain over night even though I can hardly eat im never hungry...weird
Im not a fan of bread or pasta that part should be easy and I only eat out once every couple of months so this should be fine. Im excited im going to give it a try....
Batty1, as you're a thyroidectomy patient gluten free isn't as obvious an issue as it is for those with Hashimoto's. For Hashi's patients the gluten stimulates antibodies and causes symptoms. For those of us with no thyroid, we're in pretty much the same position as the population at large. Unless you've got some reason to think you have thyroid antibodies as well.
I have no idea what type of thyroid issue I had prior to thyroidectomy only thing I know for sure Is that for 3 yrs prior to surgery I was very bad off with swallowing issues (choking sensation) and panic attacks that were so bad that I could not drive on any highway for fear I couldn't find a safe place to stop. Panic attacks have been replaced with pains that are crippling at times and muscle spasams in my neck and migraines. Yup thats pretty much my life get rid of one thing and get 3 more to replace it....suxs being me.
I heard back from my endo tonight and he will not change my synthroid and I can't have another blood test until this time next year. He says my weight gain is from poor eating habits and lack of exercise and offered weight loss pills but I would have to pay for them since they aren't covered oh and I need a sleep study because that will cause weight gain if im not sleeping well and all my current feet pains, excessive water weight, migraines and neck spasams that practically choke me to death are NOT THYROID RELATED and have nothing to do with my Thyroidectomy and went as far to say I shouldn't listen to other thyroid people they dont know about thyroid issues !
Yup my endo is a real honest to goodness idiot and all my problems above started after I had my thyroid yanked👎
This is really terrible aftercare. One year after your thyroidectomy is really no time at all. You should be having your dose adjusted every 6 weeks until it looks good
You really need to get the complete set of finger prick tests and take care of yourself! I am 4 years after my thyroidectomy, and now completely self medicate. Doctors are often just very clueless. Hopefully your case will be simple and all you will need is some dose tuning. You look a bit undermedicated, in fact your TSH is a bit high - not enough to make a decision on, but just a clue that when you get your freeT3 result back it will be low.
The endos want my tsh low so the cancer doesnt come back so they say...personally if I could go back in time without forgetting anything I would never of had my thyroid removed... the after care is a joke. Im definatley going to do my own blood test my only issue is the endo won't honor them. Im also going to start looking for functional medicine doctor and kick the endo to the curb.
I did warn my endo that if in fact my meds are found to be incorrect Im filing a complaint that no human should have to suffer in as much pain as ive endured for over 8 moths and told again its in your head...
Doctors would consider your current TSH low. And this is one benefit we get after cancer - doctors are okay with the TSH being suppressed, which means under the range. But usually to get your freeT3 high you will have a super low TSH, usually 0.01 kind of order.
In the US you will have an easier time finding someone to prescribe the better treatments. It would have to be a functional doctor. Stopthethyroidmadness is US based, so there will be advice there in how to find a good doctor.
Personally I buy my tablets from overseas without prescription. This is often what it comes down to. Although once you're armed with all your results, you may find that all you need is a dosage change and to top up your vitamins with over the counter product's.
Please look into the private testing I described in my earlier post. It might not be as expensive as you might think, since you don't have to see a doctor.
Once you have results we could help you with interpreting them.
I can sympathise as I have the same thing going on and I’m under medicated I go back to the endo to get that fixed next week. Had my thyroidrectmy in February after they told me it was thyroid cancer and then after that I was told oh just another autoimmune disorder like really these doctors just don’t care
Tiredmum75, If I knew my medical team would dump me once they determined my numbers are "perfect" I would have opted not to have surgery.
I feel abandoned by my healthcare left to fend for myself in failing health, getting a new doctor is a must for me now since my thyroid surgery has excellerated my other immune diseases .... I have Rheumy appointment today for my feet pain. Im sure this doctor won't do much for me either.
I experienced similar problems as you, especially the tendonitis in the same places as yourself, I find that not wearing tight shoes helps, I also experimented with various vitamins, I discovered that taking flaxseed oil has helped my condition a lot, magnesium is great for my arthritis in the spine too, taking milk thistle helps with the digestion. All the best.
Thanks Glen202 I'm going out tomorrow for more magnesium and I will pickup flaxseed oil and I think that I'm now having a shingles outbreak...does it ever end.
I have a friend who had bad shingles, he was so stressed and in a bad relationship, he eventually split with his partner and lo and behold the shingles disappeared, he went off the meds, went to the gym and lost weight as well, he is 78 years of age and as fit as a buck rabbit.
Hi Glen202, Your post couldn't come at a better time. I've been fighting burning skin sensation for months until a few weeks ago I had a shingles outbreak and my burning skin disappeared, I've been on valtrex now for almost 4 weeks. I would have never thought my burning skin was going to be a shingles outbreak.
When I was diagnosed with Hashi’s, my feet hurt so much I could barely walk. I’m now on Liothyronine only (T3) at 60mcgs a day and my feet haven’t hurt since I began taking it. I also take D3, folic acid and B vitamins.
Fortunata I had thyroidectomy for Cancer prior to being told I had the Cancer my Doctors always told me I was fine. I'm currently taking 100mcg synthyroid and 15mcg Cytomel and you could be right I think my meds need to be adjusted.
Thankfully, I still have my thyroid... even though it doesn’t work well but I definitely believe the foot pain was a sign of under-medication and less than optimal vitamin levels.
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